Our Gift from God

Arrangements for our Angel Princess

2011-06-23T08:36:00.000-04:00

Lindsay Dean

DEAN, Lindsay Raye
Of Parchment

Lindsay was born June 11, 2008 at CS Mott Children's Hospital at the University
of Michigan with a congenital heart defect known as Hypoplastic Left Heart Syndrome. Because her heart was too weak for complete surgical repair, Lindsay was placed on the heart transplant list in November 2008. After a long fighting wait,
her angel heart finally arrived just in time to her in June 2009. Lindsay was finally able to make her way home in
July of 2009 to begin her
new life with her family. 3 year old Lindsay Raye Dean, daughter of Everett (JR) and Suzanne (Lumbard) Dean of Parchment, received her angel wings Friday evening,
June 17, 2011 at Bronson Methodist Hospital after having a seizure which led to cardiac failure.

Lindsay is survived by her
two brothers, Cole and Cruz Dean; grandparents, Mary Dean (Parchment), William and Linda Smith, Donald
and Susan Lumbard (all of Kalamazoo); great grandparents, Clarence and Delores Lumbard (Plainwell); aunts and uncles, Daniel Lumbard (Pensacola, FL), Ken and Suzan Dean (Parchment), Doug and Deb Farrer (Kalamazoo), Robb and Carole Simpson (Wayland), Marva Simpson (Kalamazoo), Daniel Simpson (Clarendon Hills, IL), Jeff
and Carol Simpson (Lebanon, NJ), Jeannie Schoonbeck (Portage), John and Pam Lindsay (Muscatine, IA), Rick and Debra Lindsay (San Diego, CA), Wade and Retta Town (Kalamazoo), and Ed and Cindy Dean (Scotts); cousins, Braeden and Camden Lumbard (Pensacola, FL), Zachary Dean (Parchment) and Samantha Dean (Kalamazoo).

Preceded in death by her grandfather, Everett Dean, Sr.; great grandparents, Carrol and Margaret Lindsay, George and Ruth Dean, and Albert and Beatrice Schoonbeck; and uncle, Charles Simpson.

In lieu of flowers, memorials can be made to the Lindsay Dean Heart Fund at any First Community Federal Credit Union or by paypal on Lindsay's blog at www.lindsays
heart.blogspot.com to help with funeral expenses and
her pay it forward ministry
to other heart babies at CS Mott Children's Hospital, Love From Lindsay Baskets (www.
lovefromlindsaybaskets.blogspot.com). A Celebration of Life Service, given by Pastor Pam Vanderberg, will be held on Friday, June 24, 2011 at 11:00 AM in the Valley Family Community Center, 995 Romence Rd. in Portage. The family will receive friends at the Langeland Family Funeral Home, Westside Chapel, 3926 S. 9th St. on Thursday, June 23rd from 5-8 PM. Please visit www.langelands.com for online obituary, directions, register book and condolences. (269) 343-1508

Heaven just got sweeter............

2011-06-19T23:26:00.002-04:00

With the heaviest of hearts, we are saddened to say that Our Gift from God has passed suddenly and now in the safe arms of Jesus. Friday June, 17th will now be Lindsay's Jesus Day. Funeral arrangements will be announced very soon.
Please pray for strength for our family during this time.
Heart blessings always~
Suzie

Summary of our week at hotel Mott.........

2011-05-18T00:11:00.002-04:00

Starting where I left off..........so......after her ordeal on Monday from getting her line placed, Tuesday was spent just recovering. It was a mellow day of checking her levels, keeping her comfortable, and lots of rest. Thank goodness for an uneventful day! On Wednesday morning I was awaken by a phone call from one of the fellows working in the unit that week. She said the Dr. G wanted to take her down to the cath lab asap. What!? (good thing I had been sleeping in the ICU waiting room!) Apparently he had heard a gallop ( third heart beat) on Tuesday but just attributed it to the craziness from Monday. However, it was worse on Wednesday when he listened to her. His thoughts were that the extra beat was due to rejection. Checking pressures and getting biopsies was the only way to confirm it. So, off to the cath lab she went. Was a little nervous since we knew what had happened on Monday but then again, she was hydrated and starting to feel better. In fear of rejection, Dr. G started her on a whopper of a dose of steroids just in case the biopsies told us bad news. Biopsies came back later in the day, not rejection! great! But now what!? Not to mention that the pressures on the left side of her heart were now 20. They should be 10! Great! I am thinking at this point, " we came in here for diarrhea problems and now we have heart problems!" ugh! In the meantime, we are still meeting with GI and everything sample that has been sent in still keeps coming back negative. Because of all the stuff going on with sedation, etc., she hasn't been eating hense the diarrhea has gone away and tummy looks better. This is also what the GI people kept saying as they would examine here in the ICU. Well, duh! It's going to look better and decrease when your not eating........I was really about to smack the next person who came to me with that as sounding like it was great news! Grrrrr.........at this point, it was going to be extremely difficult to figure out what was going on. We are pretty confident that the flagyl is working! Keep your fingers crossed! Moving on.........Wednesday I headed home to be with the boys and for a photo shoot that I had scheduled a while ago. I also had to be home for my best friends wedding on Saturday. On Thursday after work, JR headed over to A2 to be with the princess for the weekend. While I was away, She developed elevated sugar levels. This was because of that whopper dose of steroids. If it's not one thing, it's another! :) while still monitoring that, she was still on tpn and lipids to control her nutrition. It was decided to give her a low sugar/low lactose diet to take it easy on her colon when she starts to eat. So far so good and it was an uneventful weekend for daddy! I headed back over on Sunday afternoon so that JR could go back home to work. Sunday was our 12th wedding anniversary. Saw my groom for about 1 hour. Romantic huh? Lol oh well. There will be more!
Now we are to Monday.(yesterday) Tpn and lipids were taken off because she was eating fairly well and almost back to her baseline in here weight!!! Yay!! Getting used to this whole low sugar/low lactose thing, but we are getting it. Uneventful.....so I thought. Lindsay now has an elevated heart rate and we can't figure out why. We upped her atenolol but it hasn't seemed to be making any difference as of yet. Not sure if they will really do anything about it but we I'll figure that out in rounds tomorrow (Wednesday). Today, she still has the higher heart rate and now we are battling with nutritionists on how many calories she should be getting. They say a minimum of 1480 per day. What?!! I don't even think that I eat that much! I know it's possible but......I'm an adult!! Not only that, but our problem is no longer her weight! She is back at her baseline and keeps gaining .1 kilos everyday! She can't keep doing that. I don't want to end up with an obese child! Ugh! Ever get the feeling that you think you are being listened to but you're not? Lol well, long story short, I think I'm winning that battle. Cardiologists are really not worried about it, so I won't be. :) the question now is the heart rate. Lindsay had some funky electrical things happen on her monitor the other day that Dr. G wants Dr. Bradley to look at since he is the expert in that field to see if he thinks we have an issue. Didn't hear anything today so I am assuming that they will have an answer tomorrow by the time they round on her. If it is a problem, there is a med that will correct the electrical problem and lower her heart rate. Ok, great. Let's get on with it then! :) antsy you ask? Pretty much! You see, Cruz graduated preschool on Thursday and this mom will not be missing it!! Thanks to the fabulous Devon, mommy doesn't have to worry! She will be staying with Lindsay tomorrow night and Thursday morning so that I can go. Love you girl! Who better to stay with her than a physician from U of M!! :) She knows people......lol
Tonight I had a visit from GI. Once every couple of weeks, they meet with the pathologist (which is one of the very best in the country......so they tell me) and discuss as a group all of the latest scopes and biopsies over that time period. Of course our princess was one of the topics of discussion. He discussed in detail the areas of concern. She did have some areas in her small bowel that indicated that she does in fact have celiac disease. However, her blood tests indicate otherwise. Hmmmmm well, because those two findings are different, we can try a few things to see if they work. Once Lindsay has completed her cycle of flagyl, and the diarrhea stays away, then she should be fine eating whatever she wants. If the diarrhea returns after the flagyl is completed, then we take in a sample to make sure that she doesn't have anything else first. If that comes back negative, then we are to start a gluten free diet for at least two months to see if that works. We should really know if it does within two weeks. I asked that question about how soon will it work because if she is till having diarrhea , I don't want to end up in the same boat that we are in now. so, only time will tell on that one. She will take her final dose of flgyl on Friday.
Hopefully this got you caught up. Crappy to not really have a definite diagnosis but at least she is better and the end is near! I can feel it! :) the only obstacle after we get the ok to go home is getting her line out. She will have to have it out in the cath lab and sometimes they have to coil it to prevent bleeding. Mainly because of where it is placed.....in her liver.
Please pray for a successful rounding tomorrow and that everyone has an answer to our problems! Lol I will update as soon as I know the plan! Lindsay prayer warriors rock!

Poop.......

2011-05-09T22:41:00.002-04:00

Hi everyone! It's been a little bit but have been crazy busy trying to keep up with our little princess lately. She is still having belly issues which started back in December before our family left for Florida to celebrate Christmas. Anyway, this passed week and a half has been eventful. Lindsay was admitted a week and a half ago to get some tests rolling on her belly. The first order of business was to get a PET scan to see if there were any areas that lit up that basically indicated that she had PTLD (post transplant lymphoproliferative disorder). PTLD is a type of cancer that is sometimes found in people fter transplant. Finally on Friday afternoon, they were able to get her in. So incredibly happy to say that that test was negative for PTLD! Yes! However, this means that we don't have an answer yet. Next step is to do an endoscopy and colonoscopy. Biopsies were taken and all looked normal to the naked eye. Now, we wait.............
Lindsay was discharged on Tuesday and was so happy to finally get to eat and drink after having to be on a strict diet to clean out her system and then npo the morning and part of the afternoon of the procedure. things were back to normal on Wednesday and then on Thursday, her diarrhea was worse than ever! I contacted Meg and decided to watch her overnight and decide in the morning on what to do. I called her first thing to let her know that I didn't feel good about how she was doing and then made an appointment with the pediatrician to get a second pair of eyes. Pediatrician sent her for the predictable blood work and sure enough, she was slightly dehydrated. Off to Ann Arbor we go! Ugh! And on a Friday! Double ugh!
So, I finished what errands we needed to run and headed east. Went through the ER and finally was in a room by 11pm. Of course the nurses knew we were on our way and had a private room hook up all set for us :) Lindsay received some fluids in the ER and more overnight to try and solve our problem. On Saturday, she was doing pretty well with her drinking and just ok with her eating. She slept a lot on Saturday but we were thinking that she had also caught some type of virus and was just trying to recover. Who doesn't sleep when they are sick? Well........then comes Sunday. Besides the joy of having my threes boys come visit me on Mother's Day, the day was pretty grim. Lindsay was even more lathqrgic and had absolutely no energy what so ever! She didn't even have enough strength to hold her head up let alone sit up on her own! We lasted until about 2pm or so and I had had enough. She was now throwing up along with the diarrhea and dwindling away before our eyes. I got the attention of a resident that was on the floor and told her that I was done! She was no longer floor status material and she needed more attention! All of the color was disappearing from her face and her belly just kept getting more distended. They called for the ICU fellow to come over and look and she certainly didn't waste any time what so ever moving her to the Pod! Now we're talking! As Kyle so eloquently put it, mama bear roared! Lol when we got her over to the unit, we quickly inserted a ng tube and suctioned out her stomach to try and release the air and whatever else that was causing the distention. So far so good and her stomach went from 61 centimeters down to 54 or so. Progress. In order to get her the fluids that she needed, they really needed to get more access so they started another IV in her foot. That was fun. Not! Her access is horrible and then add being dehydrwted on top of it doesn't help. Lindsay then received boluses of albumin. Took some blood gases to find out that her levels were all out of wack. Her electrolytes were horrible and she was definitely in trouble! Of course, her potassium was one of those items that was low along with others. Her white blood count was fine. Her crit was low so she received some blood and her bi carb of course was low as well. After all of that, she was I,proving but she was still 1.5 liters down in fluid. Not good. So, the decision was made today that she really needed a PICC line placed in order to get the volume that she really needed to get better. While waiting for the go ahead to head to the cath lab for the line, a bunch of stool samples were sent down to the lab along with continuous monitoring of her stats. Again she was npo and ticked to say the least that she couldn't eat or drink before the procedure. Ugh! GI also cam by to discuss our next steps......I think. Mainly came to tell me that everything that they tested so far and biopsies has come back negative. They are treating her for Small Intestinal Bacterial Overgrowth and put her on flagil for that. Not knowing that that is the problem, being on the antibiotic is not going to hurt her but will kill any of the bacteria that they think is growing in her small intestine. W shall see whwt the outcome of that one is! Grrrrrrrr. We she is ready to eat, we are going to start her on a sugar free diet to keep things easy on the colon and go from there. Hoping to have a brainstorming meeting soon to discuss the plan of attack because we still didn't get one. Contemplating a second opinion!!!
The day just got harder after Lindsay line was placed. She had to get a transsapatic PICC line becau her other areas are just not feasable. After that was done and because she was so incredibly dehydrated, she started having trouble. Her cardiac output was starting to decline and all hell broke loose. She needed some epi and dopamine along with more boluses of albumin and whatever else to make her come back! Ugh! She didn't code, but was certainly close to it. Again, we have some wonderful people that care for the princess and we are grateful for them yet once again. Dr. G was there very step of the way and fighting along with us for belly problem solving. I don't think we are leaving the pod until we have it figured out.;) oh Lindsay....how you like to give mommy and daddy heart attacks! Sleep well princess! praying for forward progress tomorrow. Prayer warriors are appreciated!

Pray for Harrison!!!

2011-04-02T10:11:00.002-04:00

Harrison is currently at U of M on ECMO and waiting for his angel heart. He has been on ECMO for about 27 days now. He needs a miracle and needs the Lindsay Prayer Warriors in full force! To read his story, click on his name at the side of the page. Thank you!

Fashion show on hold........

2011-03-31T15:17:00.002-04:00

Had a fight with the wall, and the wall won! Poor thing tripped and hit the corner of the wall right with her noggin! My poor husband was right there but couldn't catch her fast enough. It was like it happened in slow motion but neither one of us could get there in time to prevent the inevitable. Ugh! She was a champ letting me hold an ice pack on it last night. We kept her awake in fear that she had a concussion. I gave her some Tylenol because I KNOW that she had to have had a headache after this! Good news is that the swelling is gone but the ugliness of it will last a little while. Oh man, and is it ugly! Poor baby!!!!!!! ;( Keeping an eye on the bruising. Post transplant kids sometimes have trouble with bruising. I will call if it doesn't go away ;)

Fashion show!

2011-03-31T14:48:00.006-04:00

While I was in SC, of course I didn't come home empty handed! This is the fashion show request from Rebecca with more to come!

An update on the princess! She has been doing great! Her appetite is fantastic and meds are starting to level out. We had to decrease her tacro dose once again as her level was 17 last week. Now she is all the way down to 0.5 ml's twice per day! That is hardly anything! Simply amazing that all of a sudden her body is saying that she doesn't really need the drug! She was blessed with a perfect match and we just know her donor angel is always watching over her. We are going to get another level tomorrow and will know Monday if we need to make yet another adjustment.

She has an appointment next week with a fantastic GI here in Kalamazoo. Anxious to run things by them and see if we have nailed down her belly problem. We have taken her completely off of dairy (minus cheese on the pizza, etc.) and her belly and stools have been soooo much better! Praying that it is something as simple as an allergy all of a sudden. We shall see what he says and move forward. Trial and error, I think we have the basis down.

Again, more to come with the fashion show. Stay tuned! I had so much fun shopping for her! Especially with all the smocking that is available in the south! YES!!!!!!

Yes.....we are home! (last week...)

2011-03-22T16:37:00.007-04:00

Delayed post but yes, we are home! We FINALLY were discharged on Wednesday afternoon! Final diagnosis was tacro toxicity. YIKES! We certainly do not want that to happen again! Not good. God has sure allowed Lindsay to jump her hurdles and for that, we are thankful.

I had Lindsay Baskets ready to go before we needed to head to the hospital but didn't have time to load them up. So, when JR came back to the hospital to pick up Lindsay and myself, he was great enough to bring the baskets! So, I was able to finish assembling them right in her hospital room and then wheel them down to POD A for the nurses to deliver. Delivering them to the unit never gets old. While our stay at Mott, we heard at least four heart warming stories about the baskets and the families and it warms my heart that they are loved so much! Those stories just give more even more motivation to keep on giving back!

As you can see, Lindsay got a little visitor while we were there. Ahhhhh, Tommy and Lindsay Schomaker..........we may just see that on paper someday ;-) He says that we will! lol Thank you for the visit Colleen and Tom!
Here is Lindsay playing "doctor". She is getting pretty good at listening. Maybe someday she will!

Oh.....thank goodness for the Christmas gift! ;-) What could be better passing the time at the hospital? Comfy pillow, watching Ni Hao Ki Lan, and eating cheese popcorn!

I had a lot of anxiety while hospitalized. Shocker, I know! Not only did we stay longer than expected, but we got discharged the afternoon before I was to get on a plane from Detroit to South Carolina!

I was so afraid that they weren't going to let us go on Wednesday. Thank goodness that it worked out because spending time with these lovely ladies was incredible and just what this momma needed! Time away in Charleston is always fun and we sure did make the most of it! We laughed, cried, ate....allot!, and certainly relaxed. We all deserved it and I'm thankful that everything worked out

as we planned. Thank you soooo much to Rebecca and Danielle!

Enjoy some of the photos that I captured while sightseeing in one of my very favorite cities!

Long Days

2011-03-15T23:10:00.003-04:00

Lindsay has been doing fantastic! She looks so much better and is back to her normal self. Thank you once again to the good Lord above! Yes friends, you guessed it. We are still in the hospital! Ugh! Why, you say? Good question but in typical Lindsay fashion, she shows the doctors things on her own time. We were told that maybe on Sunday we would get discharged. Well, over the weekend, Lindsay developed high blood pressure all of a sudden. Ugh! We have gone up on her Enalapril and have been monitoring it ever since. These last few days have been VERY boring waiting for the medicine to work to the doctors liking and waiting to see if her blood pressure has stabilized to what they want her to be. She has had a very successful day today with regards to that and depending on her tacro level and blood pressure reading in the morning, we should be able to go home! Jr is bringing the boys over tomorrow to pick us up so crossing my fingers that they can make the road trip! Jr went home today to be with the boys since we had to break our promise of coming home last night. We didn't want to break another one today. So, he was there to get Cole off the bus and when my Dad brought Cruz home. You talk about two happy little boys! I can't wait to see them!
Over the weekend the doctors also requested to send stool samples and urine cultures down to the lab in hopes to figure out what is going on with her belly. They had found some yeast in her stool so they are further investigating her urine to see if there is something in there that should be treated. If so, then she would just get an antibiotic and things should get better. If not, then GI will be in our very near future because even though we have the other things figured out, her belly is still distended and lots of stool still being held in there for some reason. Maybe just a Myralax fix we hope, but you know the princess, it won't be that easy.:-)
Hugs and love to you all. The prayers keep coming and are always appreciated more than you know!
Heart Blessings~
Suzie

In the right direction......

2011-03-11T21:23:00.003-05:00

The last few days have been very productive and she is looking really, really great! Most all of swelling is gone and she has been eating! That is so exciting for us because Lindsay hasn't eaten very well the last almost three months. Just nibbling here and there. Yesterday she ate a whole piece of pizza along with Mac and cheese for lunch. Her snacks have been Doritos and cheerios. I think we have finally kicked the saltines kick that she was on. But, the poor girl didn't feel well and that is what tasted good to her. Can't blame her for that! Today she was surprised with a huge bowl of popcorn by one of the cna's. She was in her glory and Loise was thrilled that she loved her gift so much! Awesome! Lindsay had a bath today too. It had been almost a week. She probably feel like a whole new woman! Lol spaghettios and a little jello was on the menu for lunch today. Can you tell that I am thrilled that she is eating!?
On the medical side of things, she is still on her diuretics and today was her last day of her antibiotic for her pneumonia. She started myralax yesterday to try and release all the extra stool that is in her bowels. So far, nothing really exciting in her diapers that is out of the norm. I think tomorrow we might be taking a more aggressive approach. The fear in doing that is drying her out too much. We just have to be careful of dehydrating her again. She also has a lot of air in the bowel too. Not too clear how that is happening but hopefully once we get her emptied out a bit, that will help. We are getting there and we are very happy that she is here at U of M. They re so careful with her and they all know that she can be tipped in the wrong direction very easily so they are being cautious with be aggressive. Her tacro level this morning was down from 10 to 8 this morning. So, still very good in that department. Another blood draw in the morning to see if her dosage is what we need her on for when we leave. There is a very slim chance we could go home tomorrow, but only time will tell and what her reaction will be to another dose of myralax. Thank you again for your prayers. The Lindsay Dean prayer warriors are the best!
Heart Blessings ~
Suzie

We are on the FLOOR!!!

2011-03-09T21:58:00.003-05:00

Things are really happening today! She was able to get her central line out of her groin, all IV's were pulled, and all meds are oral! Yes! Her swelling is much better due to her lasix and aldactone diuretics and she has eaten more today than she had in a total of three days at home! Ahhhhhhhh.........We are now on the floor and....wait for it.......not in a private room? "WHAT?" you say? No more precautions for her! She is so far post transplant and has no crazy flying bugs so we get a room ate. Different I will say but we got paired in a room with a beautiful family with a daughter, Addison who is Lindsay's same age, who is just cute as can be! We are so, so happy!
Now, tomorrow they will draw more labs to again check her taco level. It was already down to 23 today from 53 yesterday! Awesome! You can totally tell that she is coming back to her normal. Such a great sight my friends! I will address the plan to figure out her gut issues but I have a feeling that all of this was started by a virus ( when she got the flu before Christmas) which led to her not eating as well, which led to dehydration, which led to her body not taking it anymore, which led to her tacro going berserk because she was dehydrated. We were VERY lucky that we didn't encounter more severe results because of that critically high level! She really should have been seizing with that level! Yikes! And so not cool! But, yet gain, our princess rules the roost and likes us too much to leave us. God is not ready to take her away. She is teaching us just too much. I hate that she is my teacher, but that is what I believe she is here to do. I am a much better person because of her. Thanking God for her everyday and that HE chose us as her parents! Here's to a successful tomorrow so we can blow this Popsicle stand!

A day of unknowns......

2011-03-08T22:52:00.002-05:00

Today started with taking Lindsay down to the cath lab to take a closer look at her heart, get a few biopsies, and try and get lines in for meds later if needed. Got an update from Meg about 2 hours later that they were able to get access through her groin for the biopsy (whew) and had gotten 8 tissue samples to check for rejection. The next update about 1/2 hour later was that they had to give Lindsay some Dopamine to help her blood pressure because it had really taken a dive during the procedure. Freaking out momentarily that we had a bigger problem on our hands, she then explained that they had to put her under general anesthesia, put her on the ventilator hence the reason for the lower pressure. She was reacting to the anesthetic and needed some assistance for the rest of the procedure. After all was done and getting a line for meds was unsuccessful ( not surprising. Her access really stinks!) , they brought her up vented but before we could even see her, the decision was to extubate her because she apparently was throwing a fit! Lol Wonder why? We finally got to see her and really, we thought she looked pretty good. We knew she was doing ok because she was asking for crackers and juice:-) Her eyes really lit up when she ate her cherry Popsicle! The rest of the afternoon was spent taking care of her and making sure she stayed comfortable. The hard part of that was watching phlebotomy try multiple times trying to get another IV. They were in her room for almost an hour and even with ultrasound, they couldn't get it accomplished. Ugh! Poor baby by then was ticked off! That is putting things mildly! A little versed and got a well deserved nap. Mommy and Daddy then got to leave to get some dinner.
The highlight of the day was Dr. G stopping us before we went to grab supper to tell us that her biopsies came back with absolutely NO REJECTION!!! Thank you to the great Lord above! So, what does this mean now you ask? Well, we also found out that her Tacro level was 53! Um, that's not good! Her level should be anywhere from 5-20 and Lindsay's is normally around 13. So, the plan is the wait it out a few days to allow for her tacro level to decrease and see what her heart looks like then. The elevated level could be the attributing factor to all of this trouble. That would be great if that fixes all of these unknowns with her heart. If she then decides to release all of this stored poop, then
we have our answer. If not, then we re-evaluate and get the GI consult that I wanted a long time ago! :-) So, the plan is really to wait it out
and see what she likes and dislikes. She will be getting her small doses of lasix still along with her meds but minus her tacro dose of course.
:-) We left her in the care of nurse Amy tonight sleeping. Let's hope she gets a good nights sleep tonight and makes big strides tomorrow
getting back to our normal princess.
Your love and support for our family is truly overwhelming once again. We love you all and read each and every one of your comments whether it is on the blog or facebook. It keeps us going and gives us hope when we feel down. I say today was a pretty good day with figuring out some of the scary unknowns! Thank you for helping us through it!

Lots of information and changes......

2011-03-07T20:19:00.003-05:00

Well.......sigh. Lots going on today and yesterday since we brought the princess home from the hospital on Saturday. This was the consensus on Saturday when we left Bronson: echo looked good except for some mitral valve leakage (which we knew about), belly ultrasound showed a lot of air/gas and didn't look concerning, labs all looked better from previous day after a bolus and continuous maintenance fluid over night, and X-ray indicated pneumonia and was treated with IV antibiotics in the hospital and came home with script for it. I will say that Sunday morning, she ate breakfast extremely well which indicated to us that she was on the upward swing. Throughout the day, she did fairly well and then that evening, she was swollen bigger than ever. Ugh! Worried all evening on what we should do, we let her sleep and then in the morning, first thing, call Meg and the pediatrician. Called both and the decision was to head to U of M. Right decision! Since we arrived at the ER today, we have confirmed that she does have pneumonia and her lab work has improved. All same as Bronson's results. Good! But......after doing another ultrasound of her belly, we were told that her bowel was EXTREMELY loaded with poop! What!? What about the air diagnosis? Grrrrrrr. Wish that was it! On her echo, it concluded that her left atrium is smaller therm her right, of course the mitral valve leak, and her heart is very stiff when it's supposed to be relaxing after it contracts. Both of those things are sign of possible rejection. Sigh. So, being cautious, we are headed over to the ICU tonight for close monitoring as they do the following in preparation for a heart cath and biopsy first thing in the morning: give her an IV diuretic to try and release the fluid from her tissues to release the swelling, give her Albumin to help increase the protein levels in the blood stream so that when they give her more fluids to re-hydrate her, the fluid will hopefully stay in the vessels instead of the tissue. They will also give her a large dose of steroids in preparation for any treatment that needs to be done in case we are dealing with rejection. Now, if it is rejection, we were relieved to hear that this is treatable and she will be fine once the meds are figured out and dosed for her acceptance. Thank You, Lord! Please join us once again in prayer that her little body still likes the donor heart and that we can set our minds at ease of this worry. Amen!
Now, the other issue is with her poor little poop filled belly. Thinking that all of these issues are heart related, they aren't going to worry about
that at this time. One thing first and dealing with the most important one is the priority. After the results of the biopsy, we will be able to move forward with treatment but knowing if it is rejection or not will determine how they go about treating the other things.
Thank you again to all of you who have prayed for us and continue to lift our family. I will update again after the heart cath tomorrow morning.
Heart Blessings ~
Suzie

Home and semi-fixed

2011-03-06T16:46:00.005-05:00

We stayed one night at the hospital (Friday night) and Little Miss got some IV fluids, antibiotic to treat what was thought to be slight pneumonia, and let's just say a not so restful night ;-) Having to take vitals at 1am, 3am, and 5am got the princess a little ticked to say the least. She would do fine except for that pesky temperature under the arm get up. lol The girl has been poked so many times but what really gets her is a nurse taking her temp under her arm. Go figure! lol Getting an IV was a challenge to say the least. She still hasn't outgrown her access problem. Took them three times in three different spots to finally get the line in with her constantly screaming bloody murder the whole time. I would say it was about 30 minutes straight. Yes, she napped a little but following that ordeal, we had to take her down for a belly ultrasound to see if there was anything alarming going on. Nothing but hoping that we get a GI consult when we go to U of M on Tuesday for transplant clinic. Lindsay also received an echo which looked just great. AMEN! Rejection is and will always be in the back of our minds and relieved that it wasn't the case THIS time. She received a bolas of fluid and then maintenance from then on. Poor little thing is now puffy all over. But, I will say, it has improved her eating. I just feel in my gut that there is an underlying issue going on hence the wanting of that GI consultation when we go. Lindsay is also getting her ear tubes put in on Wednesday. We got home by noon on Saturday and have been taking it easy getting her to eat, drink, and produce stool samples. Yes, I said it. We have to collect her stools for 24 hours of time. Ewwwww was my reaction. ;-) Oh well. Have to get it tested! So, please pray that our clinic visit for the princess is successful in figuring out her belly problem which is related to her eating and then getting dehydrated problem. It just has to be. Momma knows something ain't right! Here are a few pictures during our stay.

Heart Blessings~

Suzie**

Tough cookie to figure out!

2011-03-03T13:19:00.003-05:00

This was Lindsay's foot as of yesterday. Wednesday night, it was even worse. Poor baby has kankles! She has sudden swelling in her legs, feet, and pelvic region. We are headed to the pediatrician this afternoon to try and rule out congestive heart failure. We say that because she has also been congested. Those two things mixed together is not good! Even though Meg, the transplant nurse practitioner at U of M, doesn't seem to think that it is that severe, we were all in agreement that we should go. The good news is that we are going to U of M on Tuesday anyway for her routine transplant clinic check up and on Wednesday she is getting her ear tubes put in. She is also still having her belly issues with diarrhea which also may be a factor since it has gone on since Christmas. Praying for the best and hopefully we will be put to ease later this afternoon. Maybe an echo is in our near future. Thank you again for your constant prayers and support for our family and the princess. We love you all! I will keep you posted!

Blessings~

Suzie

Update in Little Miss....

2011-02-22T20:54:00.003-05:00

Due to multiple ear infections since last June, Lindsay's pediatrician has pulled the trigger and called U of M to have tubes put in her ears. This passed month has been awful and she has been on an antibiotic of some sort all month long! She goes through her ten day cycle on the med, off for a day or two, and then scream of pain in the middle of the night. Yep, infected again! Or it never went away! Poor thing! So, on March 8th we go to A2 for her next transplant clinic visit and pre-op for her surgery on the 9th. Yes, folks, she found something else that she hasn't experienced yet! By the time she's 20, she will have had every surgery known to man! lol

The dates actually worked pretty well. We will just stay the night on the 8th and won't have to worry about making the few trips back and forth. We also just found out that Lindsay's boyfriend ;-) , Tommy, has an appointment on the 8th as well and we will be able to have dinner and spend some time with them! So excited!

From a transplant stand point, she has been doing great! Anxious though to see what her echo and levels look like because she has been a bit "purple" in her lips and fingers. But, the good part is that it goes away every now and then so I'm not totally freaked out about it yet. She has been acting fine, minus the pain in her ears, and is speaking more and more words every day. She's growing up. Don't know how I feel about that yet ;-)

The above photos are of Lindsay eating her VERY nutritious breakfast. The stinker slipped a few treats in with her frosted flakes ;-) Hey, I think everyone is a sucker for Jelly Belly's! The other one is of Lindsay and Jen when we delivered those precious Valentine Baskets to the heart kiddos in POD A. They have a special bond that will never be broken. We love you, Jen!

Delivery for the heart....

2011-02-22T11:54:00.004-05:00

in more ways than one! Valentine's Day has a whole new meaning now and here is why.........

My heart is full! Thank you to all that donated to this wonderful cause and a HUGE thank you to Hearts of Hope for making this possible as well. We are surrounded by so many wonderful people. We are blessed beyond belief!
Heart Blessings~
Suzie

Volkswagen Commercial: The Force

2011-02-10T14:56:00.002-05:00

If you are football fans, then you certainly watched Sunday's Super Bowl! Little known fact that the commercials for the worldwide event are usually fantastic. Well, they certainly live up to expectations this year.......at least Volkswagen did! I'm sure you had to see it. Little Darth Vader trying to use his powers :-) Little did we know that the people at Volkswagen had the knowledge and awareness of what February was and hired a little boy with a CHD! To read his story, click here......http://www.wearechildrens.org/?p=1818.
Below is the commercial if you happened to miss it!

This week....

2011-02-07T11:58:00.003-05:00

Today marks the beginning of Congenital Heart Defect Awareness week and we are celebrating by taking some incredible heart themed baskets to Mott tomorrow! It warms my heart so to be able to give this small gift to the parents of these special babies. I can't even begin to express what it means to me as we pass these out tomorrow. I don't know if it's just because of what week it is.......nope, it's because these kiddos are my heroes and I can only wish that I could be as strong as them. So, this post is short because I have allot of organizing and packing to do for tomorrow! Heart Hugs to all of you!

And of course, one more of the princess to tide you over ;-) She was trying to make a heart with her hands. Pretty good attempt, I think!

Tis' the time.......

2011-02-01T16:37:00.003-05:00

to raise awareness about American Heart Month and now the famous CHD awareness week (February 7-14). I have begun my quest to collect items for my goal of 40 Love from Lindsay baskets to deliver to Mott on February 8th. I have received so many donations for the baskets. Both items and monetary. We could still use both to make this happen, so if you would like to contribute to this ministry, you can do so by using PayPal to the right of this post (to sponsor a basket is $15), or if you have items to add to the baskets such as Valentine themed receiving blankets, pacifiers, pacifier holders, infant boy hats, infant (boy and girl) socks, or 6-8 inch stuffed Valentine animal, you can email me at utsuzie@gmail.com and I will get you the address to send your donation to. This ministry has really made a difference in a parents day, or week, and I am very thankful to all of you that have contributed. My hope is to keep this going for a VERY long time!

Princess News: The month of January has really been low key for the most part and have just stayed out of the cold trying to prevent any illness! Besides a runny nose and slight cough every now and then, she has been healthy......until Sunday night that is. If I hadn't posted it, Lindsay had another ear infection in November that required two doses of antibiotic to get rid of it. Prior to that, since June (on her birthday of all days!), she has two other that have required double dose antibiotics and a few other that just required one. In our visit to the pediatrician on Monday, we have made the decision that we have been trying to avoid.....Lindsay is getting tubes! The next question was answered today on where she would get them done......Ann Arbor. I'm ok with that. We meet with an ENT on February 8th (good timing to deliver baskets, too!!!)to determine how soon we can get this taken care. Poor girl Sunday night was SCREAMING ALL NIGHT LONG!!!!!! Felt so sorry for her. Even Motrin and Tylenol didn't take the edge off.
Other than that excitement, we have been good and staying afloat. I CAN"T WAIT 'TIL SPRING!!!!!!!!!! Getting a blizzard tonight GRRRRR so sick and tired of snow! I am officially in the "winter blues". On the bright side, the sun did make an appearance the other day! Miracles DO happen!! lol At the top of the blog, I posted a new picture of the princess playing in the snow....well, standing, but her version of playing in it! ha ha I have also included a picture of a few of the items that will appear in the Love from Lindsay Baskets for "heart" day/week. I cannot wait to make this delivery and show all of the families how much we care for them! Until next time.......
Suzie

This little girl......

2011-01-12T20:21:00.002-05:00

never ceases to amaze us! Went to U of M today for what we hoped to be her LAST neuro appointment and sure enough we were told, "No need to return. She looks great and we are going to see you on an "as needed" basis." Can I say WOOOHOOOO!!!! Our miracle princess rocks! Next road trip is in March for her regular clinic visit and we are anticipating the same results at that appointment!

In the meantime, I am working like crazy to achieve my goal of 40 baskets to U of M for "heart day" AKA Valentine's Day. If you are interesting in donating (you can use PayPal on this blog) or sending items (you can email me at utsuzie@gmail.com) , they are certainly welcome! If this goal is achieved, I think that will put our basket count well above the 170 mark! Awesome!

Enjoy some of photos that I took for our Christmas cards of Little Miss.

Heart Blessings!

Suzie

Photos from basket delivery and our beach Christmas!

2011-01-12T20:01:00.002-05:00

Happy New Year, friends! We are so grateful for all of you!

Finally........

2010-12-30T23:17:00.002-05:00

I have finally found some time, and energy, to post an update on our very special princess! I know you all were about ready to throw things at me but we have had a crazy last couple of months and as I type this, we are enjoying one of our last nights on vacation in Pensacola, Florida with my mom, step-dad, my brother, and my two nephews. It has been a great week spending time with all of them here at the beach (even though the weather is not exactly beach weather). Memories have been made and we hope to do this again soon! If you aren't friends with me yet on Facebook, find me and you can see a sneak at some of the pictures from the trip. I will upload them on here pretty soon :-)
Well, these last couple of months, thankfully, haven't really been about the princess! Believe it or not! She has been pretty darned healthy despite a short 12hour case of the flu about a week and a half ago (along with the other 4 of us! Ugh!). Good thing that this happened before the trip! Although, it made for some pretty tough packing when you don't feel well. But, we muscled through it and have been enjoying our Christmas getaway.
Lindsay's last clinic visit in November couldn't have gone any better! She passed everything with flying colors and still no word or mention of a biopsy. (knocking on wood as I type that! Lol) She has had the typical, and normal, ear infections along the way. Nothing that a little Augmentin can't cure. She still reacts more severe than a normal child would to a simple ear infection, but that is just how it is going to be with her rejection drugs keeping her immune system down. We have been super careful about keeping her healthy but as I mentioned earlier, she still ended up sick. Sometimes all the sanitizer in the world can't beat those nasty bugs! Thanking God that we didn't end up in Ann Arbor for that one! She doesn't have to go to clinic until February!
Lindsay has been making HUGE strides in her speech these last few months as well! She is combining 4-5 words together and she is actually comprehending what we say even more. She is growing into such an incredible little girl. Not my baby anymore :-( the biggest news is that she weened her binky! Next is the potty training but we take one thing at a time and you know the princess! In her own time. Lol
We have been continually blessed by the support of our friends and family with more fundraisers in the last few months. I cannot even begin to tell you how much these meant to us and made it possible to pay some bills that we were not able to pay. Praying everyday that 2011 gives us an answer as to how to make things easier for our family. But for now, I stay at home, building my photography business and selling travel as the season rolls around to booking those spring break trips! Referrals are always welcome :-)
Before we left for this vacation, I started a little fundraiser for special Christmas edition Love from Lindsay Baskets. I was hoping to raise enough for at least 10 baskets but much to my surprise, we raised enough for 20! My heart is full! Thank you to those that supported this special delivery! We collected some super cute items for the baskets and I thought they turned out just fantastic! A special thank you to my mom for sewing the receiving blankets in my absence because I was down in bed with the flu and for helping me put them together when I was too weak. Love you, Mom! Also, a special thank you to my bff, Dani, for going with me on the delivery.
These last couple of months I have had some medical issues but finally got them straightened out and I am starting to feel like myself again. Hence, the not updating in a while. So, for that, I apologize. I never intended for 2 months to hqve passed and I do have to say, I missed all of you! I promise to add photos to this post when I get back, but for now, you can see them on facebook. :-)
I hope all of you had a very Merry Christmas and have a Happy New Year! Here's to hoping that 2011 goes smoothly and there is no rejection in site!
Heart Blessings~
Suzie

Multi Vendor Event fancy cole slaw recipe:

2010-11-26T09:43:00.002-05:00

Here's the recipe for the cole slaw served at the Multi Vendor Event that so many of you asked for. Thanks to The Lori Moore's Potluck Pal, Susie Morgan for submitting this recipe in last year's cookbook.

Slaw:
1 10 oz. bag of cole slaw
1 bunch of green onions (chopped)
1/2 cup sunflower seeds
2 pkgs. of Ramen Noodles (beef flavor)

Dressing:
3/4 cup canola oil
1/2 cup sugar
1/3 cup vinegar
1 beef flavor packets (from Ramon Noodles)

Crunch up uncooked Ramen Noodles and mix in with slaw, onions, & sunflower seeds. Combine dressing ingredients. Mix everything together, toss and refrigerate 1/2 hour or longer before serving.

One HUGE blog update coming VERY soon!!

2010-10-20T07:43:00.002-04:00

Let's just call it a summer overview ;-) Lindsay has been one busy princess! So excited to share with you!

Prayers for Tommy tonight......

2010-10-02T21:49:00.003-04:00

Please pray for Tommy tonight. He has been admitted and trying to get figured out what is wrong. Treating him for viral infection as of now and going from there. We love you, Tommy! This picture is especially for you, from Lindsay ;-)

Kisses!

Happy Birthday, Cole!

2010-09-23T16:23:00.003-04:00

Seven years ago today, at 9:23pm (he was born 9/23 @ 9:23!) I gave birth to a beautiful, healthy baby boy. We named him Cole Everett and he has been the twinkle in our eyes ever since! Cole brings us such joy everyday and is such a delightful young man. Must be getting that from his daddy because from what I have heard all my life, I was definitely NOT like my child! lol Happy 7th Birthday, buddy! Now, lets go eat some donuts! ;-) Cruise Oct'04

Cole: May '10 ~photo by Patti VanHuizen

PS I will be getting a post up soon with a detailed summer overview of the princess ;-)

All things........NORMAL!!!

2010-08-25T01:03:00.004-04:00

Mom- "Lindsay? Where did you go sweetie?"
Lindsay- "Mommy.........I dwalin'!" Her first masterpiece done in 3 or 4 different colors of crayon. People, believe it or not, she has had no prior training! ha ha (FYI, this was done in her brothers' room in which a huge Hulk Fathead is on the wall......in case you were wondering ;-))

Couldn't resist THIS photo op!

Well, just a few weeks before my oldest son starts first grade, he finally looses a tooth! He was so proud. And yanked it out all by himself! Tooth fairy came and brought him a special silver dollar from 1976! Man, THAT is one OLD coin! ha ha Good job, buddy!

And if this isn't normal, then I don't know what is! He's not called Crazy Cruzy for nothin'! Oh, how we love having NORMAL!

Another Celebration!

2010-08-21T08:47:00.005-04:00

On this day, four years ago, at 10:09 in the morning, we welcomed another gift from God to our family. He weighed 7 lbs 7 oz, was 20 inches long, and had a bit of dark hair on his beautiful little head. We named him Cruz Robert and have enjoyed him tremendously ever since! Cruz was a very easy delivery! After only 3 pushes and only 6 hours of really hard labor, he joined this world, happy and healthy!

Our first family photo!

Cruz, you have grown into a wonderful little boy. You were blessed with wit, humor, and are the king of the robot dance! We love watching you turn into such a great little man and couldn't be more proud of you as we are today. We love that you have your mommy's spunk and your daddy's love for pretzels and chocolate! Mommy and Daddy love you with every ounce of their being and we hope that you have one of the best birthdays ever! We love you, Cruzer!

Happy 4th Birthday, buddy!!

Love,

Mommy, Daddy, Cole, and Linds ;-)

Where did my baby go?

2010-08-11T13:29:00.003-04:00

There she is! Although, not so baby anymore. This past weekend we replaced her crib with a big girl bed......sniff sniff. Taking it down for the very last time was very emotional for me. BUT, I quickly realized that it was a complete blessing and gift from God that we were able to make this change for her! Check out her new digs!

A Post FULL of "Firsts"

2010-07-16T15:19:00.007-04:00

Can you believe that at 2 years old, Lindsay is still experiencing a bunch of "firsts" when normally a child at this age has already experienced. Man, it has been a LONG two years! BUT, this last year has been absolutely the best having the princess home with us. Yes, we have jumped a few hurdles since she was discharged last year, but all in all, it has been great having her home! This past weekend was the annual Kindleburger Festival at the park right by our house and included in the festival activities are plays that are done nightly during the festival time period. We were able to attend the Saturday showing of The Suessical and the boys had a great time. Lindsay was too busy socializing that she really didn't have time for the play!! ha ha This last Father's Day was very special. The first one in two years that we have been home for. This year was a great one especially since we could spend it with my 87 year old grandfather. His present from his great-grandson's was this cane that came directly from the Louisville Slugger Museum when we visited there this past April. Cole picked it out and was so excited that it was time for "Papa Yum Yum" to open it up! Grandpa now takes it with him and shows it off and tells the story of who got it for him. He is so proud of "his kids".

That weekend was very relaxing finally getting to enjoy the lake and just hang out. The boys and their "papa" (my dad) enjoyed the new game for the yard.

This is what the adults look like after a big meal and a few drinks. "No, go ahead kids, we will just watch you." ha ha

While the boys did some fishing that weekend, Lindsay got a head start on practicing for when she is big enough to catch that "big whopper". ;-)

Another big first for our family since we have had the princess home was to go camping. We spent the long weekend at the campground during the 4th of July and it was absolutely awesome!

Making s'mores by the campfire......

.....and eating them served to be a challenge when you make them with the big a** roasting marshmallows that Meijer sold this year! What a mess, BUT so worth it!

Lindsay is tasting her FIRST s'more. Needless to say, she thoroughly enjoyed it and after each bite, she said, "Yummy!" And then, no shocker, I cried! ;-)

Such a happy camper!

Ok, well, this story is definitely a "normal" toddler story but yet again, another first for the princess. Notice the nice raspberry on her forehead?

And notice how she is sliding the plastic across to try and see out better? And notice the black handle at just the right height for her to "bump" so that the door will fly open? Yes, folks, that is how that happened. I was shucking corn at the picnic table that was just outside of that door and up against the camper when I heard the thud and then the screaming. I swear she had broken her neck, that is how awkward that she fell right outside the door and down the step onto the indoor/outdoor carpet that was covering the dirt. She recovered quickly and all I could think of to do after I saw her "owie" was to say a prayer that her open wound wouldn't get infected!! Thankfully it didn't and healed up just fine. Talk about scare the crap out of momma!!!!

That same weekend, my Aunt Carole hosted a beautiful baby shower for both of my cousins. It was so nice to see them and it was again, a first for Lindsay. Her first Baby Shower! I had found an adorable 4th of July dress for her and a bow to match! Notice that I have her hair covering her wound ;-)

Lindsay also got to meet her cousin, Matthew, for the first time, too! What a great weekend all around!

This past Wednesday, JR and I took Lindsay for her 1 year (a month later) post transplant clinic visit. Her echo, labs, and ekg were, as Dr. Kurt said, "FABULOUS"!!!!!!!!!! Both he, Dr. G, and Meg, were just thrilled at how amazing that she looks and is doing. The "B" word (biopsy) was never mentioned and I will say, I am just fine with that as long as she keeps on truckin' the way that she has.

Our trip would not be complete without a visit to 5 East. Here, Lindsay could finally show off her new trick to all that haven't seen it yet......walking!!!!!

She took right off and had no problem mingling in the playroom......for the FIRST TIME!!!! Yes, it is just steps from Moderate Care where she lived for almost 8 months, and NEVER got to play in!! She found a maraca that she liked and took it with her on her journey down the halls to say "hi" to people. Or as I said, "Walked around like she owned the joint!" ha ha

This is definitely a first for her to do! Nurses and doctors were thrilled to see her looking so great and "normal"! It must be good for them to see her succeed and know that they had a hand in making that happen. Warm fuzzies..........

As you all know, at the party last month, we collected items to start the Love from Lindsay Baskets project. Well, it seemed fitting to be able to take the first load of baskets with us to celebrate the 1 year anniversary of Lindsay being home. So, all week I had gathered items together and got them organized to be able to take 12 baskets with us. In doing that, all I could think of was this angel..............

Annabelle was with us during this entire journey and if you didn't know this already, this exact picture was taped to Lindsay's crib the ENTIRE time that she was in the hospital. She was Lindsay keeper during that time, I believe anyway, and she also has inspired us to continue her mom and dad's wonderful ministry here in Michigan. Annabelle, thank you for making yourself so present in our lives. I wish we would have been able to see you, but we will, someday, in heaven. (Wiping tears......now.)

So, to all of you who have helped to make this ministry possible, here are some pictures of our very emotional delivery of Love.

Getting ready to wheel them up to 5 East for delivery!

The very first recipient of a Love from Lindsay Basket is Nikola Tasich. He was also born with HLHS and had just been transferred from PCTU to Moderate Care that day. He is doing just great thus far and we wish the very best for him, his mom Stephanie, and his entire family through this journey. MY HEART IS FULL!!!!!!!!!!

As the blog title reads......

2010-07-06T20:36:00.004-04:00

Our Gift From God! We are blessed with every day that we have our sweet princess. Thought I would share with you some new shots of her from our little session today. Thank you Auntie Becca for the most adorable smocked dress! It looks fantastic on her!

I will share with you in another post with Lindsay's latest "firsts" . God continues to bless our family every single day. Hope everyone is enjoying their summer! I know we are!

Heart Blessings~

Suzie

A fabulous party and with a few surprises.......

2010-06-19T09:01:00.009-04:00

I just have to say that last Saturday was indeed and emotional and happy day for our family. Friday was spent getting ready for the big event by going and picking up all the supplies that were needed. Saturday morning, well, let's just say, I got up MUCH earlier than I normally do! I went to my dad's to help unload tables and chairs and to unload the keg of beer (which my husband was very happy about having!) and to visualize where we needed to put everything. Thank you to my dad and uncle Robb for all of their help with getting stuff together. They drove the day prior from Florida to be here for the party and I'm sure they were exhausted! Thanks also to Sue for everything she did. Cleaning out that barn was no easy task! At the beginning of the party, Kyle was showing Lindsay one of her "operation" books. I think Lindsay thought she was reading to Kyle and Ashley. Too cute!

Anyone recognize this beautiful family? Well, I skipped a whole section of my morning with you. After helping (with what I could anyway) at my dad's, I had to call the pediatrician because the princess was just not herself still. She slept her whole birthday and prior to that, she had been up ALL NIGHT LONG!!!! She seemed to perk up a little the evening of her birthday but was still not the same on Saturday. So, off we go to get her checked out. I left to go get her at Cole's baseball game (JR had the kids there) , breathe......., and as I approached the field that they were playing on, I saw her. I saw Rebecca standing there and I just was in total disbelief (for about 2 seconds) and then here comes the "crying like a baby" moment!! Hands over mouth, warm feeling of "I don't know what to do and I don't care how many people are watching me" moment. It was unreal to even grasp that they came all this way just for our family! AMAZING!! Scott was right behind her with Luke and hugs were given all around. I didn't see Wyatt because the southern social butterfly that he is, he had already made some friends and had an intense game of soccer going on down the way. So, we then walked down to where everyone was standing and come to find out, my mom was the ONLY one who knew that they were coming! She had flown them here just for the party! That surprise couldn't have been better! Not to mention to find out that they were here until Monday so we were going to have some extra time to spend together! Well, we could only talk for a few minutes because after all, i was on the clock to get the princess to her appointment! ;-0 She ended up needing the steroid for her inflation again along with an antibiotic for an ear infection. Poor baby. However, as soon as I got the first dose of meds in her, she was like a new girl! YAY! After visiting with the doctor, getting scripts filled, and running a few more errands, we met the Butcher's at our house and then headed to the party. A pit stop was made, of course to see the new Luke. Mom and Rebecca headed to the Winter household to be able to meet them and their new addition. I met them there too. They had just arrived home with Luke so we didn't stay long. Another awesome surprise was my brother! Dan flew in, for one day only, just for the party! Thanks for coming, Dan!

Once at the party, Rebecca and Elaine FINALLY meet!!! I saw Elaine and Bill walking up the drive, asked Scott where Rebecca went, and then I turned around, and they found each other! Simply awesome for most of our blogging community and Lindsay Prayer Worriers to finally meet face to face. Amazing day!

Carlee and her family were in on the fun as well. Not to mention the biggest helpers EVER!!! A huge thank you to Ashley and Amanda for all of your help! We couldn't have done it without you and all your supplies! ha ha

Another special guest arrived. I know she looks familiar to you all because I spoke of her often while Lindsay was in the hospital. This is Mindy. One of Lindsay's personal nursing favs! So special to see her and her husband Michael show up to the party on their way to St. Joseph for their anniversary getaway. Mindy will always have a special place in our hearts for loving our daughter so much. A bond that will never be broken!

Meet Brittney! She is a U Of M heart transplant recipient and didn't want to miss out on all of the birthday fun! She, along with her dad and brother, came to the party. Jen (her mom), we missed you!!!!!! Brittney received her gift of life 6 months prior to Lindsay. You are looking at another miracle my friends.

Now if these aren't the cutest little bloomers! This is part of the present that Rebecca sent in the mail to Lindsay for her birthday. I think that was to throw me off! ha ha The onesie that she was wearing was just s simple Carter's onesie and I ironed on an applique that I found at Hobby Lobby. It reads "Miss June" in sparkles. PERFECT!!! Less was more that day because it was so stinkin' hot!!!

After all the pulled pork (super yummy!!!) and all the sides to go along with it (including the replicated salad that I made to resemble the salad that I liked so much from the U of M cafeteria. Sad, maybe. But, oh so good!!), it was time to sing to the princess! Tommy, Cruz, and daddy helped in the process. She didn't like the singing so much, but the cards that sang, BIG HIT!!!!

Sharon made another beautiful cake to honor all of those who prayed for and supported our family. It came out just perfect and was oh, so good!!!!

Perfect for a princess!!

Yes, Tommy and Colleen didn't miss out on the fun either! Tommy was a HUGE hit with the "Lindsay" community and we couldn't have been happier that they were able to come! Am I looking into the future? Seriously? Helping to feed her? Where did this kid come from? ha ha WE better not loose his number!!!

Another blogging meet and greet! Elaine, her husband Bill, and Brett Butcher finally meet as well. Just awesome!

Well, Sharon, the cake was a huge hit! Tommy, Cruz, and Michael (Brittney's brother) sure thought so!

Time to open presents! (even though the invitation said not too bring them! ha ha What was I thinking?!!) Like I said before, she loved the musical cards along with her new baby doll and her new Kai Lan night light ;-)

Since the Butcher's were here, why not take a few photos of their sweet babies?!!!

I especially like this one. The title should be, "Please, sweet Jesus, let my teeth come in soon."

The next day after the party, we headed out to Gun Lake for some fun in the ....shade! No sun, but that made for better fishing for the boys. And right off the dock for that matter! They had so much fun and fished for almost the entire time we were there. they came in to eat and took a break for a boat ride, but that was it! Fun stuff with awesome memories to boot!

Cole and Wyatt have become great friends. The leaving part for them was tough. They both cried and were wondering when they would see each other again. Is it because they have something in common with their sisters? Or is it because they share the name "Cole". (Wyatt's middle name and Rebecca's maiden name) Trust me, it gets creepier than that my friends! We were definitely destined to have our paths cross! Who knows because these two are connected!

We were special enough to witness and take Luke on his very first boat ride! Sorry about the pink life jacket buddy. If I only knew that you were coming! ha ha

Look at that cute little tooshie? Lindsay loves boat rides. She says,"weeeee" almost the entire time!

All in all, last weekend was one for the record books as being the most incredible, ever. Thank you to all that came and enjoyed it with us! Love from Lindsay Baskets has a HUGE start with all of your donations and can't wait to make my first delivery in July. All of your support continues to amaze us!

We love you all!

Suzie

Happy 2nd Birthday to our princess......

2010-06-11T16:36:00.000-04:00

Thank you Meeker family for the most adorable birthday dress for Lindsay!! C.U.T.E.!!!!

To our daughter~
Daddy and I couldn't be happier to have you HOME for your birthday this year! We have quite the celebration planned for you and I just cannot wait to show you off to all of those who have prayed for our family and who have prayed for you to receive the greatest gift of all, your gift of life! This time last year, we were celebrating with you in your crib and you were still recovering from getting your new heart. You looked absolutely fabulous that day! When we arrived to your room, Megan had decorated your room with streamers and a very special sign to ask before you enter the princess' castle. ;-) You were so spoiled there! Throughout the day, you had lots of visitors that would just look at you with complete amazement in their eyes of how well you looked! God gave you the chance to live and He did it well with the most perfect gift for your 1st Birthday. Early presents are always the best! Sharon had baked two large cakes to share with the nurses and doctors on the floor and in POD A. She even baked a small one just for you! That evening was even sweeter. For the very first time since you had been admitted in September of '08, Bethany FINALLY got the chance to take care of you. What a day to get her! We were all thrilled and decided to let you dig into your cake! You did so well and then after a while, it got to be a little much since you had never tasted such a thing. I think you got a sugar headache! We cleaned you up and then you took a well deserved nap. But, NOT before you got a special visit from Tommy! He was still a little week but his mommy and Margaret came down to see you. He was determined to see you that day. Well, he did it and was so proud! Love you, Tommy! I will always remember these sweet memories and look forward to sharing with you every detail in the future when you start to ask questions.
Happy 2nd Birthday Princess!
We love you forever!
Love, Mommy and Daddy

Definitely a day to remember!

2010-06-07T17:18:00.006-04:00

As soon as Colleen told me about the party a few months ago, I put it on my calendar and was for sure not going to miss this HUGE event! Man, am I glad that we didn't miss it! We had an incredible time with everyone at the party and met so many wonderful people that were praying for our beautiful princess too! We mingled for a little while after we arrived. Colleen had kept our arrival a secret and the look on Tommy's face when he saw his princess.....priceless!! Man that kid just loves her so! Meg (transplant NP) was also there with her husband and later on, a few of Tommy and Lindsay's special nurses, Margaret and Megan, from the floor and moderate care at U of M. After we ate a little and socialized, Colleen wanted to sing to Tommy so that people could start digging into the cake! Yummy! So, we did! Happy Heart Birthday Tommy! Then we sang again, FOR LINDSAY! So special coming from people that we barely know but felt as if they have known us forever. Yes, I cried! I could because JR was taking the photos! ha ha That beautiful pink cupcake was just for her. So special! Now looking at this picture....what does this resemble?

hmmmmm, maybe she will see this again someday? Just picture him holding a pretty, light blue box! ha ha Will she say "yes"? Time will tell how this one will play out, folks! So cute!

The happy couple ;-) Later on, Tommy referred himself as Lindsay's "mini-daddy". I about peed myself when he said that!

Precious. Both here because of selfless decisions. God is good! I'm thinking the photo on the next cover of U of M's magazine. Whatcha think?

I just loved this one! Right after we arrived, we went into the house to set our belongings down and Tommy just couldn't keep his hands off! Too cute! You can see behind Tommy, a picture frame that he made with Lindsay's picture in it when he was in the hospital over Valentine's Day. Oh, pure love I tell you!
She just loved the swing. First time ever getting to swing. She kept saying...."weeee". Again, tears!
Tom just loved making her laugh! This is Tommy, Lindsay, and nurse Margaret. So special to Tommy that she was able to come to the party. She is so special to him and to us!

Thank you for such and incredible day, Schomaker's! It was so very special to celebrate our 1 Heart Birthday's together! Thank you, Jesus, for making this possible. Your plan has been a remarkable journey so far! Through the trials and tribulations, we wouldn't change a thing!

Heart Blessings~

Suzie

Happy 1st Heart Birthday Princess!!!

2010-06-05T07:51:00.004-04:00

Last year before transplant............

And Now. What a HUGE year it has been!

We thank God and her donor everyday for making it possible to keep her with us for a while longer. We love you precious girl!

Now, off to party with her boyfriend! See you in a few hours Tommy!

On this day, one year ago.........

2010-06-04T02:02:00.000-04:00

a simple phone call changed our lives forever. I remember every single detail of that day as I am sure I always will. I'm shaking even as I type this out for you!
It was a beautiful June day and I woke up in my room at the Ronald McDonald House as I usually did every week day while Lindsay was in the hospital. It was around 9:30 am (really, about an hour earlier than I would normally wake up because I always stayed with her so darned late! But, my girl is a night owl just like her momma! I just like to blame her nurses instead! ha ha) and was getting ready to go see my princess. I went earlier because I had a "Suzie" afternoon planned in Kalamazoo to get a pedicure and to do some bookwork for the business. I spent about 1 hour with Lindsay before I left for home for a couple of nights to spend time with my boys. That time, for the first time, Lindsay saw me leave and as I walked down the hall, I could hear her crying. Oh, the heartbreak! I wanted to just grab her and leave.....even just for 2 days! So, walking the rest of the way to elevator, I was crying! The drive home was very normal. Grabbed my large McDonald's coke before hitting the highway, adjusted the cd changer to play my favorites, and sang all the home. Yes, I sing to myself and I don't care who sees me! ha ha Stopped home for a few minutes to drop some things off and then to the salon I went. At this point, it was around 2:30pm and getting ready for my "Suzie" time. Went upstairs, WITHOUT MY PURSE!!!!, and began to get my pedicure. Which was fabulous by the way! I needed to have "flip-flop" feet! Just about 3:45, Missie (who works for me and is a personal friend as well) came upstairs with my phone. She said it had been ringing and this time she decided to grab it for me. It was JR. I was thinking that maybe he wanted to discuss what I wanted to do with the boys tonight since I was home. Oh no! NEVER expected to hear what he had to say next!
JR: "Hi honey. Are you sitting down?"
Suzie: " Um, yeah (kind of like the smart ars that I am!), I'm getting a pedicure. What's up?"
JR: "She's getting her heart tonight!" His voice was shaking and I could tell he couldn't tell me fast enough! And the heart is a PERFECT MATCH!!"
Suzie: " What?!!!" Then the sobbing started and totally didn't stop for at LEAST 10 minutes! I have two witnesses on that one! After I calmed down and ended the phone call with JR, I started notifying everyone that I had on my list. I even had nurses from U of M calling me because they were so happy and they knew that I finally was aware of what was going to happen! I bet they were just dying to call me before Dr. G could! ha ha Meanwhile, Jessica is TRYING to paint my toes!
JR: " Yes, Dr. G just called me and said that he couldn't get a hold of you (because I left my purse DOWNSTAIRS!!!!) so then he told me. He asked me if I was driving, I said no. Then he asked if I was sitting down, then I said no....but I will! ha ha
Dr. G: " Lindsay is a getting a transplant. (DUH!!! ha ha)
JR: " Yeeeaaaaahhhhh........
Dr G: " And that will happen late tonight!"
JR: " OMG!!!" (well, he didn't say OMG, Oh My God! That would have been pretty funny though! ;-)
Dr. G finished by telling him the details and when we needed to be there and then they hung up.
Before I left the salon, my phone rang again. It was Dr. G. He wanted to make sure that my husband got ahold of me! ha ha I politely (because that smart ass in me almost came out again) said yes, he did. ;-) Then after he gave me the details too, Jen (Lindsay's primary nurse in the PCTU) got on the phone. Waterworks again people! I remember her telling me that it was ok to cry. So, I did. I don't think she understood a single word that I was trying to say I was so emotional! She was working that day and then said that she was the next day too so she would have her when she got out of surgery. How perfect was that plan!
I finally got home around 4:30 after running to the bank and post office (travel documents had to be mailed for clients!). JR was running around gathering things to take with. When I walked into the house, we just dropped everything to hug and cry AGAIN!!! SOBBING!!!! And when I say this, this time the cry was with the sense of relief that it is finally happening and with fear that we never see her again after this. It could easily go either way. The unknown is scary. After a few minutes of this and then trying to regain composure, we finally were on the road. It was now 5:00. I drove and made it to A2 in record time! ha ha 1 hr and 15 minutes! Normally this drive is 1 hr and 38 minutes from our driveway! Pretty good and not having to get pulled over and explain our situation of why I was in such a hurry. Trust me, I had plotted the whole speech in my head on the way if I were to get pulled over!
When we got to the hospital, we walked down the halls and there was a definite vibe in the air. Nurses and Doctors definitely were in a great mood because of the news and kept peeking in on the princess. She definitely has a fan club over there! The evening was filled with laughter and just plain starring. I caught myself a few times just soaking her in. I needed to remember what she looked like, every detail, every scar, every eye lash, just everything! That evening, Lindsay just happened to have one of her very special nurses.....Mindy. Mindy usually took care of her "2nd" shift and Lindsay just loved her to pieces! So excited that she was able to have her that evening. As midnight came upon us, I asked her if she was ready to leave. She said, "No way! We have been waiting for this day and I'm staying and taking her down with you!" I was so touched by that. Oh, everyone that took care of the princess just got so attached and if I were in Mindy's shoes, I wold have done the same thing! Megan came back after her shift was over too to spend some time with the princess before hand. Other visitors were Aunt Carole and Uncle Robb. They were working in Lansing at the time and left as soon as they could so that they could see Lindsay before surgery. In it for the LONG night with us were my mom, Sue, and Stephanie (Kalamazoo Gazette reporter). My dad was in Florida on a fishing trip at that time. It was tricky trying to get ahold of him in the middle of the ocean! But, we did and let me tell you something, I have never heard my dad cry before. EVER. At least not the way he did when I told him. Now I know where I got that from! ha ha What an incredible moment!
After being delayed for a while, signing consent forms, meeting with Dr. Ohye (he was just THRILLED by the way!) it was finally time to head down to the 3rd floor. I held her in the wheelchair on the way and my stomach was in knots the entire time. I felt my body getting sweaty and warm. Don't pass out, Don't pass out!!!!! I didn't but it certainly felt like it! Nurse Mindy and Lindsay were with us along with my mom, Sue, and Stephanie. As we arrived, we were greeted by 2 anesthesiologists. They asked a few questions and before we knew it, we handed our baby off to them. One magical thing happened before that though, As we passed her around for hugs and kisses, Lindsay, for the first time, said "HI". We all looked at each other and just got even more emotional, along with the shock! ha ha After she was down the hall and the doors completely closed behind her, JR and I just lost it again. We were so grateful that we had support around us because it was a very difficult thing to do. We have handed her off before, but the feeling was never like this. We regained composure and then headed up to the oh so familiar PCTU waiting room for the long night ahead. Jessica and Krissy showed up with some goodies for us because they couldn't sleep either! So nice of them. I walked the halls trying to hear the helicopter. I would keep looking down at the street to see if I saw the ambulance come in. I didn't hear or see either one. hmmmm. At around 3:30am (June 5th) we finally got an update from the OR. The heart arrived at about 3am and it is in and beating! Such an amazing feeling to hear that news. Words just can't describe! It was another 3 hours before we were able to go in and see her and when we did, she looked absolutely incredible! GOD IS GOOD!!!!!
As I write this out for you, the donor family is in my mind. My heart is broken for them. It is a weird thing to think about meeting them someday. I hope that happens. But, what would we say?? I can write all the letters that I want, but what would I say to them "for real". Maybe just a hug and silence works. Sometimes that is the best way to say something because there really are no words. We are completely blessed by this family that made this selfless decision to help another family and we couldn't be more grateful that that family was us. We probably wouldn't have Lindsay today without them. I look back to the pictures of her the night prior to transplant and she was really gray. She was probably running very thin on time here on earth. She now has special guardian angels watching over her and one very special one that she holds their heart for them. Thank you donor family. We will always cherish what you have given us. the gift of life for our daughter.
With much love on a very special day. Happy 1st HEARTiversary Princess! (tomorrow) ;-)
Heart Blessings~
Suzie

2010-06-03T09:03:00.004-04:00

Thank you to all that prayed for our family yesterday. All 3 surgeries (in 3 different hospitals!!!) went just great! Both Cole and Lindsay are still laying low for today and grandpa should be out of ICU today and back into his room at the hospital. He ended up having nearly 80% of his stint blocked so he ended up with an angioplasty along with some other vessels that the surgeon found that just can't be fixed. All to do for them is to take Plavix and aspirin from now on to try and prevent any clots.

I thought I would share with you what we were doing last year at this time with the princess as we approach the anniversary that we never thought would happen. We just HOPED that it would. Love to you all! Thank you again, Patti, for all of the priceless images that you were able to capture for us!
Happy HEARTiversary to Tommy today!!! Love you buddy and we will see you Saturday!
God is good!

Surgery (s)

2010-06-02T08:15:00.003-04:00

What a day for prayers everywhere.....
A late afternoon call from the U of M has Lindsay in for surgery this morning to fix and close her feeding tube entrance in her tummy.
Cole is having surgery this morning to have tubes put in his ears.
Grandpa Lumbard is having surgery this afternoon to have a stint repaired.
Is that enough?
Yes once again Suzie and JR are having to split up while two kids have surgery. Please lift them up while they experience the agony alone having to give their children up to the competant medical staff and pray that the Drs. have steady hands.
Grandpa, well he's a legend in the Lumbard family and I'm sure that Suzie would like to be there also. The kids love him so much.

Hugs,
Linda

It's a Party!!!

2010-05-11T15:45:00.004-04:00

~the enclosed letter~

To our dear family and friends~
The last two years for our family haven’t been the easiest to say the least. Without the family and circle of friends that we have, we wouldn’t be where we are today and we are eternally grateful to you for that! So, because of all of your thoughtfulness, we have decided to celebrate that with one heck of a party!! We would like to extend this invitation to all that have prayed for our family, helped out in any way with our boys, the house, our bills, etc. This is just a wonderful opportunity for us to meet you face to face to express our gratitude for everything that you have done for us. AND to meet the princess!!! It really is overwhelming on how many people prayed for us! Thanking God to this day for every one of you! We are so very blessed. So, if you are NOT SICK!!!! (remember, the princess’ immune system is still compromised) on June 12th, please come and join us for an Open House beginning at 3pm until the last person is standing! The party will take place at: Don and Sue Lumbard’s ~ 4992 West E Ave ~ Kalamazoo, MI 49009. There will be plenty of food and drink (adult beverages included!!!) along with cake to celebrate Lindsay’s 2nd Birthday!! We can’t explain to you how precious this birthday is to us and to her. We were very fortunate to have had her for her 1st, but completely blessed to have her for her 2nd. Miracle!~
So, to celebrate her birthday, we are excited to announce the launch of Love from Lindsay Baskets as a way to give back! These baskets will be handed out to heart babies after having their first open heart surgery at U of M. In conjunction with Hearts of Hope, we are making this possible. The baskets will include such items as receiving blankets, pacifiers and pacifier holders, warm socks, signature Lindsay bows for the little girls and adorable hats for the boys, stuffed toys, wrist rattles, and snap across (or down) onsies and shirts. There will also be more information included that explains Hearts of Hope and what an incredible organization it is for support and for hope for heart families! If you would like to help in any way, please bring any of the above items to the party or you may send to: Suzie Dean ~ 510 Hamilton Rd ~ Parchment, MI 49004
We established a registry as well at Babies R Us for these items and you are welcome to order from there and have them shipped. Babies R Us registry number is 45405192. If you would simply rather make a donation to help the cause, please make checks payable to: Love from Lindsay Baskets and send to Suzie at the above address. As parents of a child born with a porcelain heart, we appreciated anything that helped us feel better about her being in the hospital. Amazing as it sounds, these items helped us feel like Lindsay was “normal” . We want other parents to be able to experience that too even though the situation is not the best. We appreciate all of your help and can’t wait to see you there!!!
Heart Blessings~
Suzie and JR Dean

Accomplishments

2010-05-04T22:20:00.002-04:00

Lindsay has been home now for just over a week since her last "Hotel Mott" stay and has gotten better everyday with her respiratory issues. When we got home, we had to put a cannula in her nose and turn the oxygen up to 3/4 liter for the entire time that she was sleeping. The last two nights, her sats have been above 90 without O2. WOOT!!!!! She doesn't sound "crackly"anymore and she is definitely back to her old self. Now, let's pray she stays that way for at least two more weeks without any problems. Long enough so that her mommy and daddy can go on their much needed "adult" vacation!!!! I will post pics along a big announcement soon! Thank you for the continued prayers for the princess! We love you all!
Suzie

Home!

2010-04-24T23:05:00.002-04:00

After much negotiation, we are finally home. Oxygen and all ;-( At least it is just at night. Always something new with the princess. ha ha I'm sure it will take a while for this RSV and whatever bug that she has in her lungs to go away but whatever concoction of antibiotics she was given and breathing treatments, it sure has made her our Lindsay again. Feels so good! I will post pics very soon from our recent stay at Hotel Mott! I just wanted to let you all know that we were home.
thank you again for your continuing prayers and support for Lindsay and our whole family!
Heart Blessings~
Suzie

Spoke too soon......

2010-04-20T22:41:00.003-04:00

Dang it! I hate when I open my mouth too soon! Lindsay was doing fantastic yesterday evening as far as her saturations without the cannula but overnight was definitely NOT the same story. Overnight, she kept alarming and ended up being on 1 liter of O2 until the morning. Throughout the day today, we have been weening still and she is currently on 1/4 Liter and sating around 95%. So, trying to get out of here as soon as we possibly can within reason, we did allot of P&PD on her and some suctioning to see if we could get some of those deep goobers if there were any. We did get some so hopefully this will help this whole process throughout the night. New goal......Thursday. Cross toes and fingers please!
Love to you all!
Suzie

PS Claire was moved to Moderate Care today and she looks fantastic!! Brittney and Jen Butcher drove down today to see her and we were able to spend some time with them too. God is good!!!

Cannula free??

2010-04-19T23:08:00.003-04:00

I think so! Lindsay has had a fantastic day eating and weening off her oxygen. As I sit here updating, she is currently without her cannula and her saturations are consistently staying around 94-96%. Good job Princess!!!! Dr. G said that as soon as she weens off oxygen and does well for a while without it, we can get out of here! Crossing fingers and praying for a great night! Maybe discharge for Wednesday but wishful thinking for tomorrow. Man she looks sooo much better!! Because of all of your prayers once again, the princess has prevailed! We are so lucky to have you all. Thank You and thank you God!

Prayers for Claire

2010-04-18T10:37:00.002-04:00

Claire (the girl that we all prayed for and then the new heart ended up not being the perfect one) got the call this morning!!!! Please put her in your prayers today and also the family that is going through such pain today with their child. We are thanking them for making this selfless decision to donate their loved ones organs. Looks like surgery won't be until the wee hours of the morning but starting the prayers now would be appreciated. God is good!!!

PS The princess is getting better little by little. She was down to 1/8th liter of oxygen and then had to be bumped back up to 2 liters again. Currently she is down to 1 3/4th liters and her oxygen saturation's are much improved than yesterday morning. She also appears to be more comfortable breathing as well. So, today will consist of more "pounding" and getting her to take in more fluids to help release all the gunk in her chest. As all of you know, the princess does things on her own time. ;-) Hugs and love to all of you!
Suzie

A little progress.......

2010-04-17T11:37:00.003-04:00

So in rounds yesterday, it was decided to put Lindsay on a steroid to try and reduce inflammation (if that is what the problem is) in her lungs because now the x-ray indicates a problem now more centered and left instead of lower and the right side of her lungs. So, does that mean that pneumonia is gone and we have another issue? Maybe. So far she is coughing better to get things out of her lungs and it appears that the steroid is working. they have scheduled for her to be on a five day regimen of this and praying that this does the trick. In the meantime, she is still getting breathing treatments and LOTs of percussion! JR went home yesterday to be with the boys and they were just elated that he did just that. I am hitching a ride home with the Winter's today to get the van and that will allow hubby to work this week and not have to come back to get us when Lindsay is released. Why do things have to rotate around work?? Oh yeah, that insurance thing! ha ha Good news is that this morning, Lindsay woke up asking for her bottle and drank 150 cc's! That is definite progress from previous days. Now, we just have to keep that going so that she can get off her supplemental fluids via IV. Please continue the prayers for the princess! Man, this lung business is almost as scary as the heart stuff! Momma needs another vacation!!
Heart Blessings~
Suzie

PS Please included our sweet heart friend, Evie, in your prayers. Recent echos indicate that she may need more surgical repair soon due to her transposition surgery shortly after she was born. Oh, Evie, we love you and pray for you always!

Workin' on Gettin' outa Here!!!!

2010-04-15T14:29:00.004-04:00

In rounds this morning, Dr. G said that the only reason that she is still here is that she is still on O2 and is not eating. Soooooo, Lindsay is down to 1/4 liter on oxygen and has eaten baby bananas and some cheerios so far today. Can you tell I want to blow this pop stand?? Operation "Take a Bottle" starts immediately!! The girl refuses to take one so just for kicks, I am having her checked for thrush and checking her throat for maybe some redness at all. There should be no other reason for her not taking a bottle. The girl LOVES her bottle! Other than that, we lowered her IV fluids to try and make her thirsty. So, maybe later today, that will make a difference as well. I also have some questions to ask as far as if she is still aspirating a little ( Thanks D!) . I say that because her pneumonia keeps returning and there must be a reason for it.! Oh, and she was positive for RSV. ;-( She tested positive a few weeks ago too.
Lindsay was playing a little after she ate today so I know that that is the ticket for departure out of here! Please continue the prayers for the princess. We love you all and look forward to sharing more good news soon!
Heart Blessings~
Suzie

PS Thank God we already have our taxes done!!!!

LONG night....

2010-04-14T13:35:00.002-04:00

Well, it was my turn in Lindsay's room last night and after sleeping all day, she certainly didn't want to sleep very well last night. So, today, I feel like a zombie!! Lindsay had her echo yesterday to help determine whether or not she was dealing with rejection and.........NO REJECTION!!!! Every time that I hear that, I could just kiss and hug whomever it is that tells us! God is good!!! Throughout the day, despite adding another antibiotic to her list of meds, Lindsay still wasn't improving. So, now she is doing breathing treatments to try and loosen all the stuff that she has in her lower right lobe. Poor girl looks like she was hit by a truck! Today's plan of attack is to try and get her to eat. Seems easy but the girl has no interest what so ever! We tried some baby bananas this morning and surprisingly, she did quite well. She ate 3/4ths of the small jar but still has no interest in a bottle. We will keep trying so that she will feel stronger. Thank you for all of the prayers! We know that He listens to all of your pleads!
Heart Blessings~
Suzie

I am finally getting a breather......

2010-04-13T13:39:00.003-04:00

After a pretty uneventful evening, Lindsay is still resting and being treated with a bigger antibiotic to attack whatever it is that is making her feel like poop! It was confirmed by xray last night that she does have pneumonia, again!, and something else that is making her vomit, have diarrhea, and having fevers. So, in the ER, they put her on Vancomyacin and has been getting it every 6 hours since. She also got some much needed fluids through IV and had labs drawn to try and get any idea of what else is festering. So far, all things are looking normal......except for the princess. Boooooo! She was a happy little girl last night after getting the fluids and some pedialite, but after sleeping rather well last night, she has just been a zombie. Poor baby! Since we were supposed to have our clinic visit today anyway, Lindsay just finished with her sedated echo and EKG. So, it will probably take all afternoon for her to come around after being knocked out for the procedure. We will speak to Meg and Dr. G later today on the results. Looks like we might be here for a few more days so I have been trying to get us in at the Med Inn. We shall see. In the meantime, I might go hunting for a comfy chair to sleep in tonight!! ha ha Continue to pray for the princess as rejection is always in the back of our minds. It really hasn't been talked about since that is not what they think is wrong. But, I'm a mom and can't fight the fact that I always worry about that. Love to you all!
Heart Blessings~
Suzie

To A2..........

2010-04-12T16:12:00.002-04:00

Lindsay hasn't been able to get rid of her cough, fever, and bronchial mess so I took her back in to see the doctor this afternoon. No appointment, just showed up ;-) Lindsay's got it like that ;-) Anyway, long story short, Dr. didn't like what he saw and she's not getting better on stronger antibiotics, so off we go. I will update when I can.
Loves~
Suzie

Let the good times roll!

2010-04-09T22:30:00.004-04:00

Our last beach day in SC was wonderful! The Butcher's came over to Charleston to spend Thursday and Friday with us. Our time together was so incredibly special. I didn't want it to end! Lindsay and Luke (kinda rolls off the tongue, huh? hee hee) thoroughly enjoyed their first time playing in the sand. Too cute for words is all I have to say!

I couldn't help but to buy this ADORABLE bathing suit from Old Navy!! A princess is always a princess! She's helping daddy and her brothers "dig a BIG hole", as Cruz said!

Well, y'all, we made it just in time for the Easter Bunny. And let me tell you that the Easter Bunny BARELY made it!! Yes, Lindsay is in Christmas pajamas!

I love and will cherish this photo always. Love you, friend!

Saving one of the best stories for last. Meet Jeannie. Jeannie is also a heart recipient and in February, she celebrated 3 years of new life with her new heart. She has been following many blogs, Tommy's included, and Lindsay's was one that has touched her in so many ways. We had the privilege of actually meeting her and her whole family on our last night in Charleston. Tears flowed and fate made this meeting happen. God is good!! You can catch up on her journey by going to http://www.1happyheart.blogspot.com/. Thank you, Jeannie, for "stalking" us!! ha ha Some things are just meant to be!

My Heart is FULL!!!!

2010-04-01T12:31:00.001-04:00

Beach Baby!!!!

2010-04-01T08:30:00.003-04:00

Makes me tear up.......

Family photo from dinner last night. Can't go wrong with Bubba Gumps!

Aunt Carole and Lindsay..........so great!!

My special beach baby! The girl LOVED the sand!

Cute little piggies...

Vacation pre-view

2010-03-30T09:30:00.003-04:00

Our view from the condo. Ahhhhhhhhhh. Life is good!

Lindsay LOVED the fish at the aquarium!

The whole family at the Louisville Slugger Museum and factory. So much fun for the boys!

At last............

2010-03-29T21:37:00.003-04:00

Chad and Mandy (Evie's mom and dad) Scott and Rebecca (Annabelle's mom and dad) and JR and I. All (except for Luke and Lindsay) the kids were outside playing and would have been impossible to include in the photo.......there were 10 of them y'all!!!!

Through all of the ups and downs in all three of our families lives, we finally unite as one. I am so full of joy to be able to have made this trip to see all of them! We am so blessed that God led us to them. More pictures to come as the Butcher's join us on Thursday here in Charleston for some beach time fun!!!!

Look out SC..........

2010-03-22T02:39:00.003-04:00

Future ballerina??

'cuz the princess is WALKIN' into town!!! That's right, Lindsay started to walk! Just before JR and I left on our date Saturday night, Lindsay took 5 steps all by herself! Needless to say, I probably scared her with my squeals of excitement! She has come a long way and this was just another HUGE milestone in her life. She is truly Our Gift from God!
We are busy getting things ready for the very first Dean family vacation! South Carolina, here we come! We can't wait to start creating memories of this trip. It will be exciting and I will be sure to post pics from the events as they occur. We have allot planned y'all! (getting in the southern groove....)
Tonight I took some photos of the kids and as requested, I have added some of the boys, too. ENJOY!!

New Discoveries

2010-03-14T18:43:00.003-04:00

Lindsay has been one active and talkative little girl lately. She is so close to walking it is crazy! Although, it doesn't help that her brothers make it a huge deal when she falls on her bum after the attempt to take a few steps. I think she gets confused on what she should be doing! She just starts to clap and then crawls to the couch for another try at the task. So cute! She has also broadened her vocabulary a bit more over the last few months. The lists includes: momma, dadda, coe (Cole), hi, bye bye, ni ni (night night), ball, yep ( we will have to work on "proper" grammar later), and yummmmmmm. ;-) She is also making big strides in really understanding what you say or tell her to do. Sometimes she ends up in tears because we use the awful "no" word. hee hee But, then again, when she cries, who can just let her? In my arms she goes! We will have to work on that one later too ;-) All in all, Lindsay is doing just great! Her g-tube closure surgery is scheduled for April 21st. However, she is getting a cold again and I am fearful that it is pneumonia returning. I am calling in the morning to see if a chest x-ray is necessary because I would like her to be on antibiotics ASAP since we are leaving for vacation soon! I hope that she doesn't have it again though because that would mean pushing her surgery date back again. It is a written rule that she has to be post pneumonia for 3weeks before surgery. Ugh! Oh well. Just have to load up on ilex paste, 1x1 pads, and tape! Darn hole!!!
I would like to take this opportunity to thank everyone that was involved in the Auction concession fundraiser a few weeks ago. It was a huge success once again and we couldn't be more grateful! WE have the best supporters around!!!!
Please enjoy the new pics of the princess!
Love to you all!
Suzie

Reflecting......

2010-03-05T17:47:00.002-05:00

I have been overcome with emotion periodically through the day today in thinking that we could have been in their shoes so easily. I am referring to Claire. The heart that she was to receive last night ended up not being the perfect one and so she still has to play the waiting game. I can't even begin to tell you how many times that I thought of this as we made the drive on I-94 June 4, 2009. What if? I know the saying of "good things come to those who wait" but in the "heart" world, that is not always the case. Waiting is the critical part of it! Praying for them and praying that Claire's porcelain heart is replaced with a golden one soon!

Claire's NEW Heart!

2010-03-04T21:40:00.002-05:00

Well, I was going to do an update with pictures of the princess tonight but I have bigger news to share with the asking of prayers to go along with. A little girl we know from the UP, Claire, is getting her heart tonight at U of M. Please join us in praying for her and for the donor's family this evening.
www.carepages.com/carepages/ClairesHeart

Bullet .....Dodged!!!!

2010-02-17T18:43:00.004-05:00

The bubble gum antibiotic works wonders!! Lindsay has been feeling much better after almost a week on amoxicillon and she has actually slept through the night a couple of times without waking herself up by coughing. Praise God! Mom and Dad actually got a good nights sleep! She has that twinkle back in her eyes and you can tall she feels more like Lindsay. Whew! Really, I was afraid she would have to get admitted. Pneumonia is no joke, especially with transplant babies! The other excitement is that now she is totally off of her magnesium supplement, she no longer has loose stools!!! Ok, for most, that might not sound like a huge deal but man, can I tell you how nice it is to not have to change her clothes at least 3 or 4 times a day because the diaper wasn't able to hold it all!! Yup, don't miss that at all!!! THANK YOU DR. G!!!!
Lindsay grew her vocabulary this week too. She now says night night, Cole (comes out coe), and gabba gabba. (as in YOOOO Gabba Gabba!!!) Her favorite show is still Wow Wow Wubbzy but another strong contender as favorite is Nei hao, Kai-Lan. The girl LOVES that show. We found a Kai Lan doll for her for Valentines Day. She has it in her hands the whole day! I can't even begin to tell you how amazing it is that she is becoming more "normal". She is requiring less and less medication because her body is "getting in the groove". We are so grateful because that means her heart is working perfectly and has adapted to her body very well.
As some of you may know already from reading my facebook page, I finally did it. I wrote "the letter". I chose Valentine's Day to do it and we feel really good about it. We hope and pray that the donor's family will read it and respond but in the same breath, respect their decision if they choose not to. Thanking God and them everyday that we have the opportunity to update the blog to tell of the princess' doings. Maybe someday they will read it too.
That's all for now with my update. I will post new pictures next time!
Love, Suzie

Uh oh........

2010-02-10T15:54:00.002-05:00

Update: Got a phone call from Meg a little bit ago and the chest xray from yesterday indicated slight pneumonia. Crap! Off to the pharmacy I go.........
At least that explains why her cough has lasted so long. Now maybe the princess can sleep allot better! YAY!
Please pray that it goes AWAY!!!!

What a great day!

2010-02-10T13:40:00.003-05:00

Lindsay was this way the WHOLE ride home! Yes, the 1 1/2 hour ride took us 3 LONG hours yesterday because of all the snow and crazy people! So good to be home!

Before Versed......

After Versed!

She's a trooper!

Lindsay and her girls ;-)

Yesterday Lindsay had her clinic visit at the hospital and things couldn't have gone better! She passed everything with flying colors! Dr. G said, "She looks absolutely fabulous!" Now, coming from him, I could have just kissed him when he said that! Her echo looked really great and so did her EKG except for her still elevated heart rate. So, because of that, they did increase her atenolol and then I need to have Dr. Loker here in town listen to her next week to see if that dose is making a difference. We had to give the princess a little versed for her echo this time around. She is getting bigger and ever so sassy! So, needless to say, the drugs did the trick and she was as mellow as could be during the exam. She even had a lick of a sucker for the first time. That worked pretty good until Disney Channel was turned on the tv! ;-) Dr. G also discontinued her magnesium supplement and gave the ok to...............REMOVE HER G-TUBE!!!!!! Yes folks, the princess is TUBE FREE!!!!!! Again with the kiss.....ha ha ha! She weighs a wooping 22 pounds 10 ounces and is a healthy little girl. (did i just write what I think I did??) Healthy?? I could just cry! The Lord gave her to us and is overflowing us with the joy of being able to have her to hold today. We are blessed beyond words! Thank you! Thank you! Thank you!

We also got the opportunity to visit with three of our favorite people.....Megan, Mindy, and Sarah. They took time to come down and visit us yesterday. They love her like she was their own and we love them for that! It was so great to see them! Too bad Lindsay didn't see them. She had just fallen asleep and missed the whole darn thing! Oh, well. She was so tired and needed the sleep after a fun filled morning and afternoon. At some point the 5th floor of the hospital will be healthy enough to come up there and visit. Right now is just too risky. Hoping to in order to see all the rest of the staff that we miss so much!

On another note, please send your prayers up for Tommy. He is having some GI issues and we pray that they figure out what is going on with him. We love you buddy and I hope this gets resolved soon! Also, please continue to pray for Lindsay's little heart sister, Lilliana. She is still having trouble and needs super strength prayers to be said.

Thank you once again for all of your prayers and support. You mean so much more than we could ever express to us! Yay for good news!

Heart Blessings~

Suzie

Extra Prayers............

2010-02-05T18:33:00.004-05:00

Attention all Lindsay Prayer Warriors!!!!! Lilliana now has pneumonia. Please send those extra prayers above so that she gets better soon!
We love you princess Lilli!!!!

Praying for Lilli

2010-01-31T22:56:00.003-05:00

Please pray for this sweet, sweet baby. (her link is below under Lindsay's heart friends on the blog.....Lilliana)

Lilli, hang tough princess!!!!!!

We love you Annabelle!

2010-01-30T21:58:00.002-05:00

The boys had a blast decorating your cupcakes sweet girl.........
And they enjoyed eating them too!
We sang to you twice so that both boys could blow out the candle.
They went a little crazy with the sprinkles and had so much fun! Of course I had to join in on the fun. I think you can guess which one I did for you..............
I had to snicker a little when your mommy said that she got a chocolate cupcake with strawberries because I had this little number in the works as she was telling me how good it was! Mine was good too!
i will try and upload video soon.
Happy Birthday angel baby!
Love,
The Dean's

Lately.......

2010-01-28T13:54:00.006-05:00

Well, I never intend on the gap between posts to be three weeks, but that is what has been happening lately. We have been "good" busy and we are so grateful. We are finally recuperated from the holiday season and back to the grind it is! Lindsay has been doing fantastic! She is getting bigger by the day I think and eating just awesome! She will now eat a cracker! I know, it sounds like some very minor milestone, but to Lindsay, this is a HUGE accomplishment. Her favorite, Club crackers. Must be the buttery goodness! Like mother, like daughter. ;-) She also likes goldfish crackers and is crazy about the Gerber yogurt melts. She devours them!! We still give her formula every now and then but for the most part, she is eating similar to an 8 or 9 month old. So exciting! She is getting speedier by the minute when she is crawling and she is doing the same with walking along the couch. I see walking in the very near future! We need a little balance help, but soon I'm sure she will master that too! We go to clinic in AA on February 9th. Hopefully I can manage to get an appointment with the Pediatric Surgeon to get the g-tube removed! Meg said to go ahead and get that started because she is doing so fantastic. However, I need to prepare myself for them to say no too. I do know that she, at any time, can have a set back, but there are other methods to get her fluids if need be. We shall see.

She is also doing well with her eye patch. Because I see her everyday, I'm not sure how much progess she is making with the other eye working its way to being centered, but we will see what the opthamologist says in the next month or so.

Writing today is an emotional one. Annabelle is 2 years old today in heaven! I cannot even imagine the party Jesus has planned for her! We have been blessed beyond belief to have gone through this journey with the Butcher's and our hearts are with them today as they have to celebrate without her. I will post pictures later of how we celebrated Annabelle's birthday.

Things at home have been crazy. Travel season is here and I am finally able to get more things done here at home and can feel somewhat "normal" in the working world again. Even though office hours aren't there anymore, I always get a sense of satisfaction when I can still so what I have always loved to do. I have something else in the works too to "fill in the gap" that I will share at a later date. Just finding things that I think I might love as much as I love the travel business and it is exciting to be able to do these things and be at home with my baby girl! It is a process, but it is coming together slowly, but surely! I will share soon....I promise! Enjoy the photos of our winter at home and I will start disciplining myself into a regular updating routine!

Heart Blessings~

Suzie

Help for fundraising

2010-01-20T09:01:00.002-05:00

It's that time again....
We've been given the opportunity to run the concession stand at the Pierce Auction on Feb. 27th from 8am - 5pm. We did this last year and it was worth the one day of work. We have workers in place but still need a few items so we're reaching out for your help.
If any of you have a contact that would be interested in donating any of the following items please respond to the blog or contact Linda at lindal.smith71@yahoo.com .

Items needed:

coffee, sugar, & creamer
100 hot dog buns
100 hamburg buns
large bottles of pop
chips
donuts (4 to 5 dozen)
30# ground beef
100 hot dogs
ketchup, mustard, onions, relish
plates
styrofoam cups
plastic cups

A lot of people help behind the scenes to pull this together and all of that is appreciated.
Thanks for ALL your help!

There's No Place Like Home For The Holidays......

2010-01-06T19:27:00.009-05:00

Ready for photo overload????? Enjoy in sharing our events leading to Jesus' Birthday celebration and ringing in 2010. Let's hope that we are a little laid back this year for once!

Lindsay making sure that her brothers aren't trying to watch her video. I think she may be a little feisty in her young age?!

I just had to post these next three because they were just too cute not to. Lindsay found this storage container in the boys' room and what else would you want to do with....of course put it on your head! Cole wanted to be like daddy.........ha ha

Cruz was made to sit at the table until he ate all of his dinner. Apparently this is an alternative to getting what he wanted!

Ok you southerners.......this was our first snow. Whatcha think? ;-) burrrrr

Lindsay's first Christmas present was from a lovely family in Texas. Thank you Meeker family! She loves her new onesie! We are so lucky to have you love our daughter and family so much!

As you can see, Lindsay was not too thrilled with her first visit with Santa. This was by far the best photo I could get. She did calm down, but she was definitely done before she even got on his lap!

We also got a box full of gifts from the Butcher's. Brittney celebrated 1 year with her brand new heart in December and we couldn't be more thrilled for their family! Thank you Butcher's for your thoughtful gesture. The kids LOVE their presents and were so thrilled that someone sent them in the mail! ha ha

This was an extra special gift this year. Two of Lindsay's favorite nurses came to our house for a visit! Sarah and Megan love Lindsay as if she were their own and we couldn't be more blessed to have them in our lives and apart of our daughter's. Lindsay's eyes just lit up when she saw them walk into the house! I had tears in my eyes because I know that she will remember them always!

I think I should have this one framed for you Sarah! Lindsay loved playing dress up with Sarah's sun glasses.

And the gift opening begins...........

Christmas Eve is celebrated with my Dad's side of the family. Cole's big wish was for a telescope.........which of course he got!

Lindsay LOVED her new puppy and purse. I can TOTALLY see this being a real dog someday! ha ha Notice the crown on the purse. True Lindsay fashion!

And Cruz wanted a Leapster of his own.......which he got! Oh these kids are spoiled!

Christmas morning was just surreal. The thought of being home this year was just truly a miracle! Cole even said after we opened gifts........"Man am I glad we don't have to go to Ann Arbor this afternoon!" Must be he wasn't so happy about it last year.......who could blame him! We weren't either but we HAD to see the princess on Christmas and we were going even if we had to walk! Our sweet boys knew it, so they fought back the tears, piled in the van, and off we went. This year we could walk into her beautifully princessed room, scoop her out of her bed, and say Merry Christmas miracle girl. Blessed beyond belief!

Cruz got the gift he had been asking for the whole time..... a little green toy car. Thrilled to say the least! Santa is the best! ;-)

Cole........well, he wanted a snuggie. He is wearing it in the picture......and hasn't used it since! Yeah, great purchase Santa!

Then they opened this.....yes, folks, the Wii. A HUGE thank you to the Bird Family who graciously bought this for our boys and our family. The Poortenga Family was also a contributor to this years stress less Christmas. We are forever grateful for your generosity and willingness to help when you knew things were going to be tight. Our hearts are full!

What princess doesn't have a Tink? When we got her out of the box, she gave Tinkerbell a great big, sloppy kiss! ha ha So incredibly precious!

She loved her new ride on toy. She hasn't quite mastered how to go forward with it yet but does fabulous going backwards!

Who new such joy could come from $10 sleds? The boys each got one. Lindsay wasn't quite thrilled apparently!

The day after Christmas we got to celebrate my Grandma's 80th Birthday! We all gathered for a lovely dinner. It was so nice to be able to celebrate this milestone together!

Ringing in the New Year was very special and emotional for me. 2009 was a flippin' roller coaster! We are praying and hoping that 2010 will be as mild as possible and that we all stay on our steady stream of good health. All five of us were together when we welcomed 2010 and I couldn't be more grateful for that. My mom and Bill were gone to their friends house for the evening so instead of paying for a $200 hotel room for the night and driving on the road with all the crazies!, we had our special evening at their house, made a yummy dinner, watched a movie, and we all played in the hot tub. We all toasted (my yummy drink pictured) at mid-night (of course with me crying!) and then slept in New Year's day. Needless to say, it was fabulous!

For the sake of the worriers, yes, Lindsay can go in chlorine and yes, the hot tub was turned waaaaaay down! Frankly, it is the best thing for her g-tube! The kids had a blast! They slept well too. Is that the key? Do we need to get one?? ha ha

Since the new year arrived, Lindsay has been doing awesome. I think a switch was flipped or something because the girl is now eating more solid food and taking ALL of her meds by mouth! (not including the multi vitamin and the magnesium.....I sneak those into her bottle) Hopefully when we go for her clinic visit in February, we can talk about getting that g-tube out! WOOHOOO! Tomorrow I take her in to the local hospital to get a Holter monitor. This is to see if her new medication, Atenolol, is working to decrease her heart rate a little. This is only for 24 hours (nice!) and then we might have to adjust her med after U of M and Dr. Loker reads it. Praying the medicine is doing the trick!

I have allot of changes going on and allot of things being planned so keep watching for those things to be announced. We are excited to start "paying it forward" to families that have heart babies and to start planning things as a family such as vacations and family outings this summer. The first up is our highly anticipated and re-scheduled vacation to South Carolina! We are PLANNING on spring break for this and God, PLEASE let it happen! ha ha I can't wait to FINALLY meet Rebecca and Mandy and meet as many of their children as possible! It will be a fantastic trip and we cannot wait. The countdown has begun!

I want to thank all of you from the bottom of my heart for your support. We have been through the ringer and we are blessed to have all of you to get us through. Our wish for you is to have a happy and healthy 2010!!

Heart Blessings~

Suzie

Happy 1/2 Birthday Princess!

2009-12-11T13:09:00.008-05:00

My personal favorite ;-) She is growing too fast!!!!! Annabelle would be so proud of my bow!

Here ya go Mandy! The princess has a little "southern bell" in her! ;-) And I love it! We even went with a smocked christmas dress too. (The red one in the other pics.) Enjoy!

So sweet!

Heart......melting...........!

" You said what"?

Hey! Come back here................

Where's Lindsay? PEEK!

Precious.

Today Lindsay is 18 months old and her heart is 6 months (as of the 5th anyway). Can you believe it?!! Emotional isn't the word to describe what we are gong through! So grateful, humbled, and blessed to be able to see this day and the days ahead in her lifetime. Lindsay of course is crawling now and getting speedier by the day. Let's just say the gates have been busted out of storage! ;-) She is very good at pulling herself up and if i were a betting woman, I would bet that she will be walking by February. We shall see! Lindsay is doing better with real food and has been totally weened from her thickened formula. Now that is a HUGE step! It was a little nerve wracking going to just plain Nutren Junior. I was waiting for the throw to happen at any moment after I fed her. But, it didn't! SOOOO grateful. Amazing what a good ticker can do. Lindsay hasn't puked for almost 3 months now so I think we are over that whole phase in her "sick heart" life. Her last clinic visit was in early November and Dr Gajarski said that she looked incredible and was so happy with how she was improving. No talk yet of a biopsy which is phenomenal! I'm sure it will come eventually, but for the time being, we will take it! Lindsay is definitely developing her own personality (yeah, like she didn't have one before......princess!! ha ha) and is starting to become a "normal" toddler. The tantrums and everything people! ha ha I will NEVER complain about that!!!!! God is good! Also, on her last clinic visit, we discussed her elevated heart rate and Dr. G discussed putting her on a Holt monitor, so that is what we did for a 24 hour period of time. It was decided that her resting heart rate was in the high 140's. Not exactly ideal but not that unheard of in a transplanted infant. So, she was put on a new medication to try and get that lowered a bit. We will find out for sure when i take her into the cardiologist here in town and check it. Maybe that will be on my list for next week.

I would like to take this opportunity to thank all of you that were able to come out to help support William and Make A Wish Michigan for Team Taylor. Although a less than desirable day weather wise, they we able to raise about $2000.00 to help to make William's wish a reality. I went out that day as well and was bummed that I missed meeting William himself, but I am sure that he is one thrilled little 5 year old! So blessed to have an organization like Make A Wish. His smile alone is worth all the effort!

Well, Christmas is almost here. (big sigh!) Again with the emotion thing..........so blessed to share this with our daughter....at home. Decorations are going up little by little......still no tree. Long story about that but we will finally have it up by the end of next week and I can't wait! Then there is the wrapping obstacle! Ugh! I should really learn to wrap as I buy! ha ha Again, NOT complaining! ;-)

Enjoy the new photos of the Princess! Once again, Patti rocked it! I will post more candids later on.

Love to you all!

Suzie

Paying It Forward Project To Help William!!!!!!!

2009-12-07T16:32:00.006-05:00

Tomorrow, WKZO's Lori Moore will be at Don's Card Hut at Southland from 11am - 1pm autographing her Holiday Dish To Pass 2009 cookbook. The cookbooks are only $5.00 each (or more if you choose to donate more) and 100% goes directly to MAW (Make A Wish) Michigan who has chosen a 5 year old Kalamazoo boy named William to receive his wish of going to Disney for the holidays. Wouldn't it be great if we played a part in sending him?

If you are not able to attend this live event and want to purchase a cookbook, please e-mail Linda at linda.smith@mwcradio.com and I will see to it that you receive the cookbook and get the money to MAW Michigan.

Every dollar raised will be credited to Team Taylor, Rob Grainger's bike team that rides 300 miles every summer to raise money for MAW Michigan. Many of you know that Taylor was my former neighbor girl who was born with HLHS and lost her battle at age 15 before she received her wish.

Heart Hugs,
Linda (Lindsay's Grandma)

Dear God............

2009-11-25T21:30:00.005-05:00

One year ago last week, we were told that Lindsay was officially listed for a heart transplant. At first it was ok, any day from that point, we could get "the call". Cell phones were charged at all times and numbers to everyone in the immediate family were given in case for some strange reason they couldn't get a hold of us. The wait and the journey to me, officially began there. Thankful. The next week was Thanksgiving. A little strange to have our thanksgiving dinner in the hallway at the hospital, but we made due. The meal was delicious by the way and probably the best turkey that I have ever tasted! A catering company donates their services to the families of the children in the hospital every year. It really was a great dinner. Just strange. It was strange to not have the whole family together sitting at the beautifully decorated table and eating until we couldn't possibly fit anything else in our bellies. It was even strange to not have the conversation around the table that we usually do. I remember eating and then I went and found a reclining chair in the ICU waiting room and fell asleep for about 2 hours or so. My mom spend that whole time loving on Lindsay and to be perfectly honest, I was so exhausted from the previous months ups and downs, I can't even tell you where the boys, husband, and step-father went off to during this time. Apparently I needed to catch up on some sleep and relax a little. Thankful. In Lindsay's short little life, she had already missed having two holidays at home. More my sadness about that than hers I guess. The next holiday, (deep breathe) Christmas. In this past 1 1/2 years, I have really made HUGE strides in just letting things fall as they should instead of being the planner that I always have been. I would really get bent out of shape when plans would fall through or my day didn't go as expected. I don't do that anymore.....because I can't. I can't do that because if I did, I would end up in the loony bin!!!! Thankful. I have also grown closer to God........Thankful! He has given me strength when I needed it the most and He has also taught me to "go with the flow" a little better. We almost lost Lindsay 4 or 5 times that I can think of and one of those times.....well, If you have been following our story, you know what we had to do. Something no parent should EVER have to think about or even discuss. But we did. Crazy as it sounds, I'm thankful for that as well. I think because of that, my husband and I grew even closer. They say that in tough times like this, married people tend to drift apart and to be perfectly honest, in some ways we are closer. Thankful! At this point, the Lindsay Dean Heart Fund committee went into full force trying to raise enough money to keep us out of the hole and not loose our home. Well, we are here, still have our house........Thankful! I have been asked lately......how are you guys doing financially? Really, I don't how to answer that one. I think we are struggling like every other American out there but ours is a little different. We did have to fall from a double income household to a single income and trust me, I have fallen asleep many nights with migraines worrying "what in God's name are we going to do?" And then it happens. Some generous persons gave us a gift(you know who you are) so that our children will have a memorable Christmas at HOME and to take the burden off of us to be able to enjoy it instead of worrying about how we are gong to pay off the credit card when the bill comes. Thankful. And this is just one. There have been many "surprises" our way. Thankful. Now, I have always been a "do it myself" kind of person and really have never asked for more than $20 bucks to borrow. So, the generosity that has been given to our family.....ahhh....well, Thankful. I have been trying to "pay it forward" already with a few things that all of you will read about in your Christmas letter, but I struggle with repaying all that has helped us. I don't even know if that is possible. I know what you are going to say, "Suzie. You are crazy. You will NOT pay us back because we know that you would have done the same for us." But that is how I am feeling and I think I will always struggle because that is how God made me. Thankful....I think. ;-) We are blessed beyond what words can explain. I think that maybe that's my dilemma. I don't know what I can say that could possibly express how we feel towards all of you. I just don't know. All I know is that we are THANKFUL for all of you and we will always hold you near and dear to our hearts because if it weren't for you, we would be living in a one bedroom apartment in the slums. No joke.
So, as I prepared some super yummy potatoes tonight in preparation for tomorrow, I get teary eyed knowing that we don't have to go find a chair in the hallway to eat, or go home to get the kids so that we all can be together. We were blessed by a selfless donor family that has given us this opportunity to share with our daughter, as a family. Thankful. They have given us Christmas, New Year's, Easter, etc. to share with her. Thankful.

Dear God~
Thank you for making this day possible for our family. Thank you for giving us this opportunity to thank all of our loved ones and who have prayed for our family during this past year and a half. Thank you for letting us serve you and getting to learn and know you better through Lindsay. I believe you did this all for a reason, and reasons I have yet to have clarity on, but maybe that is your plan and I will accept that. I have learned to accept what you have given us and sometimes I may not know how to handle it, but in time you show me how and everything turns out as it should. You knew Lindsay had a purpose. You sent the donor family our way and your plan is coming together. I pray though for those that don't get to have this precious time with their loved ones. But, that is your plan and hopefully people are learning from you and what you have layed out for them. Thank you for our boys. Thank you for giving them the strength to know the mommy and daddy will be back home together soon. And......thank you for being you. For that, we are THANKFUL.
Amen.

Happy Thanksgiving to all of you!
Heart Blessings!
Suzie

Working, Parade, Concert, Pictures, and Crawling....

2009-11-23T22:26:00.004-05:00

I am going to start with the most exciting news first............Lindsay is crawling!!!!! WOOHOOO! What a joyous day this was when she started to do this last week!

So proud of herself!

She hasn't quite mastered multi-tasking yet.......talking and crawling at the same time. ;-)

A little preview to what Lindsay wore for her "Christmas" shoot ;-) I'm sure Patti will have a sneak peak for us very soon! Mandy.........My Mom made a pillowcase dress for her.....soooo cute! I can't wait for you to see it!
Cole and his buddies Garrett and Jacob at their Thanksgiving concert. Handsome lads.......
Look at 'em go! So cute! Sad, but true, the whole time I was watching my adorable son sing his heart out, I was thinking....."Oh my god, there are allot of germs floating around in here. I hope this ends soon!" Yes, the thoughts of a heart mom I guess. ;-) Lindsay was safe in the arms of Elaine at home......and away from the germs!
Lindsay at her 1st Holiday parade! It was an absolutely beautiful Michigan day and totally unseasonal weather for sure. We were able to walk around downtown and chat with some friends that we ran into without worrying if the kids were freezing or not. That was a great day for sure!
The boys were thrilled with this balloon! Lindsay couldn't quite figure it out but she ended up smiling at it. ;-)

I hope you enjoyed my little "catch up" post. I have been so busy catching up on bookwork for the business that took a backseat from January until August.......I wonder why?! Anyway, I'm almost caught up and when I had the thought of updating and sharing cute little stories with you, I would look at the clock and it is 1 or even 2 in the morning! NEED SLEEP!!!!!! I promise, the next post won't be three weeks away. I'm planning even another in the next day or two.......we have ALLOT to be thankful for this year!

Love to you all~

Suzie

Busy, Busy, Busy!

2009-11-01T19:14:00.006-05:00

That would be a GOOD busy! Enjoy!

OK, I'm starting off with the "whopper"! Now if this isn't the greatest sight! Three miracle children all together and NOT in the hospital this time.......priceless. Brittney, Lindsay, and Tommy...........oh how we are blessed to have them all!

Weekend before last, we went to the annual fall picnic that Hearts of Hope puts on for all the heart children and their families. The kids could dress up if they wanted to and they were able to go on a wagon ride, pick their own pumpkins, have all the hot dogs and drinks they wanted, and even got to pet some pretty cute animals in the barn! The above picture is of Lindsay and another adorable little heart sister, Madison. Madison was at U of M in November......as were we! ;-) ha ha

Isn't this the cutest clown and kitty that you have ever seen? Lindsay and Tommy........cute together huh? ha ha Colleen and I were tearing up as we took this photo. Oh, what a journey! AND check out those pretty PINK lips people!!!!! Oh, what a new heart can do!

Speaking of "oh, what a journey", I have quite the story for you! We headed to the hotel that we were staying at the night before the picnic and got an early start in order to watch the U of M football game at the hotel and then after the game, we could take the boys swimming and then order pizza and have a slumber party with all three kids! Sounds good, right? Well, not so much! It was raining when we got to the hotel so we went as fast as we could (yup, hubby still on crutches!) into the lobby and we were going to stay in the room until it stopped raining to get the rest of our stuff. So, in time, it stopped raining and I went down with a luggage cart and loaded it up with our things. Made one quick check around Lindsay's car seat to see if I got everything and happened to glance into her car seat. Hmmmmmm, a g-tube isn't supposed to be laying there! It is supposed to be ATTACHED to her! OMG!!!!! I asked myself.....when in the **** did that come out?!!! Knowing that we only had a few hours before the "hole" in her stomach would close up!! So, I very swiftly went up to the room, started flinging things around to unload and looked at my husband and said, " We can't do anything easily can we?" Hubby: "What do you mean?" Showed him the "escaped" g-tube and he looked at it in disbelief! Hubby: " Oh My God!" "What are we going to do?" Of course I don't have my emergency g-tube kit with me......so, knowing that Colleen and Tommy aren't that far away, I called her to get a recommendation on which hospital to go to. Beaumont Royal Oak was phenomenal but I do not want to go there again! ha ha Lindsay is the proud owner of a new g-tube and was just fine in the meantime. So, instead of a relaxing evening with the fam, we spent it apart for about 4 hours, picked up Burger King on my way back, took the kids for a quick 45 minute swim at 9:30 at night and then went to bed.....or so we thought! Lindsay decided to have a late night party in her pack-n-play and was up from 1am until 5 am. Fun Stuff! Oh well. Attending the picnic was worth it in every way and thankfully, we had an uneventful ride home that afternoon. Thanks Hearts of Hope for such a great day!

Cruz wanted a pumpkin with scary eyes, Cole, of course, a block M, and Lindsay's was a "pretty princess" says Cruz. ;-)

Cole "gutting" the pumpkin. (can you tell that he is in hunting mode now??) Cruz just wanted to watch. He said that it looked "distgustin" . ha ha

My brother's boys were here for a visit and this photo was after a visit to the pumpkin patch to play. Yummy.......cider and donuts always make you feel better......and before dinner to boot!

You can give me an "A" for effort. Attempting to get five children to look the same way at precisely the same time was virtually impossible but I think we did ok.

Lindsay two days after her scary airlift to the hospital. MUCH better as you can see!

This was Lindsay the morning after her helicopter ride to U of M. This is how we felt too!

Much better this year!

2009-10-31T22:20:00.003-04:00

Well, this time last year Lindsay was on a ventilator and trying to recover from a serious blood infection. This year..........she was home and in costume!!! God is so good! I do have to say that this may be the cutest little kitty in the land!

Again, I had tears after taking this. Each holiday and event will be that way from now on I think. We thank God every day that we get this chance with her. My Batman and PowerRanger were pretty darned handsome too!

I will post more photos tomorrow of our latest happenings and a very special photo of three very special transplant patients.........and all out of the hospital!!!!!

Heart Blessings~

Suzie

INDOOR FUNDRAISING SALE 10-31-09

2009-10-23T08:49:00.002-04:00

JR went to the Dr. this week and has another 3 weeks off work. Ouch! We know that this isn't what they needed with Suzie not being able to work, but we feel that we can help them out, but we need your help.
We've decided to have an indoor "garage" sale Saturday, October 31st 9am-4pm at the Parchment United Methodist Church, 225 Glendale Blvd.
What can you do to help you might ask?
Clean out your garage or basement. We can use your donations which can be dropped off at the church on Friday, Oct. 30th 1:00pm - 3:00pm or 5:00pm - 8:00pm. Please have items garage sale priced to sell. All leftover items will be "paid forward" and donated to the Salvation Army.
If you have any questions or would like to volunteer to help, please call Linda at 269-547-9279.
Thank you all for everything you do to help the Dean's get through this.
The Lindsay Dean Heart Fund Committee

Poop and Discharge

2009-10-19T20:33:00.002-04:00

Well, since I couldn't post yesterday, I will give you a little update. Yesterday was a little frustrating because we were told "no" again about going home because she was still pooping too much and not taking enough fluid in to maintain what was coming out. They wanted to hydrate her some more and see how she does and if her stools subside a little. If she tolerated a "bunch" more fluid, then we could leave tomorrow (which is today). So, we were bound a determined to make that happen and the princess succeeded!!! However, what started this whole thing was the concern of her higher than normal heart rate thinking that this was a little to do with her being dry. Well, after a fabulous day of drinking and lots of peeing, the heart rate didn't hardly budge and her rate awake and playing is still in the 150's. This should be around 120-130. (that seems to be her normal anyway) Things that make you go mmmmmmmm. All in all, she tolerated more fluid and they don't seem as concerned with her heart rate so..........we got to go home (hence the discharge title in case you were wondering what that meant!! ha ha ) YEAH!!!! Thanks for all of the prayers! They continue to work. God is good!
Love, Suzie

Not today......

2009-10-17T13:11:00.005-04:00

Well, the verdict is that we are not going home today. The question is now is if she is a little dry. JR and I are totally not going along with that idea because her eye lids are a little puffy which indicates to me that she may be the complete opposite. So, we are waiting to hear whether or not they will get some blood to determine exactly what she is. All of this concern is because her heart rate is still a little higher than it should be and we totally agree with that. I am just concerned that we will fluid over load if we just "assume" that she is dry and then we are dealing with chest tubes and lasix and I certainly DON'T want to go there! All in all, we are confident that the right decisions will be made but it just might not be in a very timely manner especially since it's on a weekend! grrrrrrr! So, it looks like another day of football and some cuddle time with the princess. Hopefully tomorrow will be the day......so we are told anyway. ;-)
Some other changes have been made which I am totally excited about! We can change her formula from 24cal Enfamil AR to Nutren Junior!!! This means no more blender for Suzie!! WOOHOOO!!!!! This comes already mixed and in a can! WOW! That means no more preparing for the next day, for daily outings, or for overnight stays somewhere and worrying if they have a blender or not! Again.....WOOHOOOO!!!!! This will free up some time. Can you tell that I'm geeked about this? ha ha The only downfall of this is that we need to pay attention to her weight gain. This is now 30 calories per once from 24 cal per ounce. She has already jumped from the 17th percentile to the 35th since August. We can't have a "chunky" heart baby on our hands. That could start a whole mess of other problems! Overall, I don't think we are too worried though because she is definitely starting to be the little mover and she will be burning more as she increases her activity. So, we are praying for her heart rate to lower a little (she is currently at 155 b/m and should be around 125 b/m) and for the docs to get her fluid levels where they should be. Thanks for the continued prayers!
Heart Blessings!
Suzie

Oh, and GO BLUE!!!!

Positives and Negatives

2009-10-16T16:21:00.002-04:00

Positives are that Princess Lindsay is feeling MUCH better and has been playing with her favorite nurses and staff members all day. (with a few naps in between) She also has been given the ok for possible discharge tomorrow. We will cross our fingers but I see no reason not to at this point. The other positive was the she tested positive for c-diff again. Antibiotics are on board and healing has begun. Negatives are that she tested negative for influenza (thank god!!!) and for strep. Negative has been the result of every other blood test also!!!! YIPPEEE!
That's the update for now. Sorry this is super quick but I have eyes over my shoulder the end this because the computer lab is closing ;-)
More updates again soon!
Love, Suzie

Drum Roll...........

2009-10-15T14:47:00.002-04:00

The latest and hot off the press news from Meg is..............most likely NOT REJECTION!!!!!!!! JR told her he felt like running the halls after she told us that! Now that is impressive only one week post surgery people! I feel the same and also feel like we just dodged another HUGE bullet! PRAISE GOD!!!!!! We still don't know what she has but she has been put on a very broad antibiotic and it seems to be doing the trick. She just ate for me a few minutes ago and has been clapping and smiling a bit.......forced, but she is doing it. She is a little cranky (so not like the princess!) but who in the world wouldn't be when you are sick! Her fever has also broken! Whew! Her heart rate is still elevated a little but thinking that is due to just not feeling the greatest. Her heart rate never went below 200 in the ER and her fever was as high as 103 and never dipped below 101. YIKES! So, as a precautionary measure in case that she may have the flu and because Lindsay arrived here with a fever, anyone who enters the room MUST have a mask and for those who are going to have contact with her have to be gowned and gloved along with the mask. This is a great new measure that is called the pandemic precaution. It's a pain in the butt but good to know that people won't be walking around passing the germs! She was swabbed at Bronson for influenza and strep. The rapid strep test came back negative but the flu swab will take 24 hours so that means we should know results by early evening. Lindsay did have a pretty nasty stool this morning that they sent a sample down for testing for c-diff again. Most likely she will have it but the confusing part is that her symptoms from last time till now were definitely NOT the same. This time was scary and it had rejection written all over it in our books for sure. Obviously in the minds of the docs here at U of M too because they wouldn't have airlifted her here. All of the blood tests aren't back yet so we just sit and wait for results and maintain trying to keep Lindsay comfortable. Her fever finally broke so that is no longer an issue hopefully. Man, I am shaking while I type..........NOT REJECTION!!! WOOHOOOO!!!!!!!!!!!!
With Love from one happy momma and daddy!!! Keep praying!

no new news

2009-10-15T09:07:00.002-04:00

Nothing new, just letting you know we haven't heard anything yet... She slept on her ride to Ann Arbor and they got her heart rate down from the 210's (I don't know to what, but down)... Keep praying and I will let you know when I hear. Heart Hugs, Steph for Suzie

Helicopters

2009-10-14T23:19:00.002-04:00

So at Cole's football game on Saturday, a helicopter flew over and Suzie said "I still get chills every time I hear a helicopter." Knowing that she must have been thinking "is someone getting a transplant?" every time the chopper flew in or out, I now say a little thank you and prayer for who ever is on that helicopter... so tonight when I heard the helicopter 20 minutes after I talked to Suzie telling me that she was taking Lindsay in to the Emergency Room, I got chills and called Suzie making sure that it wasn't for Lindsay. And the answer was "No, that one wasn't for her, but her ride from Ann Arbor is coming." WHAT!!!!
Suzie brought Lindsay into the ER tonight with a fever (of 103), and because she was very tired and a couple other symptoms that are signs of rejection. They are worried she is rejecting her heart! So they are sending her to Ann Arbor to figure out what is going on. After Lindsay leaves by helicopter, Suzie and JR will drive over and be with her. They were doing flu swabs and strep swabs to see if she had either of these and blood tests, but the doctors in Ann Arbor wanted her where they could take care of her. Forgive me for not knowing more details... all I know is that we need to pray that she is not rejecting her transplant. Pray for Suzie and JR and their family. Pray for the doctors and nurses and helicopter pilot. PRAY!! ...thank you! love, Stephanie posting for Suzie

Things just hit me...........

2009-10-12T15:34:00.010-04:00

Although things have been crazy around here, we sure have been making memories as a family. Even though we were supposed to be on vacation this week, we did enjoy being home together even though one of those days was a "surgery" day for one of us. ;-) Thursday was JR's surgery and as I posted earlier, everything went as planned and he is recovering very well. Friday and Saturday were rough ones but Sunday was like he did a 180. He was much better with his pain management and we were even able to go visit the local apple orchard and pumpkin patch this weekend. Lindsay saying "HI" from her crib.

JR being a trooper on his "crunches" (as Cole says) while the boys played.

This was one BIG rocking chair. Never really got a good shot because the wind was blowing so hard and the sun went behind a cloud and the kids were freezing and trying to stay warm. Ended up being much colder than anticipated. However, Lindsay is smiling behind that bink. ;-) Things like that just hit me.........

Speaking of that, when we all got out of the van to have our special family outing at the farm for the very first time as a family, we started walking to the entrance and I just started to cry. No warning, nothin'! I couldn't even speak I was so overwhelmed.....and all of a sudden! I couldn't help but to be overjoyed that we had Lindsay with us and we are blessed enough to get a chance at this experience with her. One that we started to love with Cole, then Cruz, and now finally, with her. Oh boy did that one "hit" me! JR was concentrating on walking with crutches on the gravel road and then noticed that I was wiping tears. Of course that follows with a "what's wrong". All I had to do was point to her and then to the pretty landscape in front of us with all the families enjoying the beautiful, yet windy, day and we actually get to do the same. AMEN!!

And so does this........

Now, this "hit" me too because when this accident happened, all I could think of was, #1 that he finally over did it and that pain that he always had in the knee finally made its appearance. Crazy as it may seem, that was a good thing and we can finally get it fixed! But then again, Great! (you guessed it.....a little sarcasm in that GREAT!) And #2, (although a little selfish) great, more pressure on me to do more around here. Just what I need! Well, that was the case for only about a day. We thank God everyday for our family and our wonderful friends that come to our rescue when we need them! Now I only hope that there comes a time that we can return that favor. ;-) As you may have guessed, the above photo is the "after" of Jr's leg/knee. (Along with the added color of betadine) He had 3 screws inserted and has incisions on both sides with a total of 29 staples! OUCH! Thank God for him that he was knocked out cold for the procedure. He has a post-op follow up appointment on the 21st and starting from that date, he can get started putting weight on it and working it back into normal working condition.

This just "hit" me when I captured this precious photo. I have to tell you that this hardly EVER happens! Lindsay likes to fall asleep generally in her own bed and for some reason that particular afternoon, she wanted to take a nap with her daddy. Like I said, precious!

I left this photo for last. Anyone guess what's new in this photo???

The princess is STANDING!!!!! She pulled herself up and everything! Now, if this doesn't "hit" you, I don't know what will! This time last year she was having so much trouble trying to survive. I remember the dreaded car ride home to tend to Cruz once Lindsay was stable enough to go home for a bit. JR and I had to have the discussion on where to lay her to rest. (yes, I'm crying as I type this!!) But, look at her now! God, family, friends, strangers, and miracles are what did it and we are so grateful. There were big alligator tears in my eyes when I took this photo. Oh, Lindsay! Mommy and Daddy are so proud of you!!!!! GOD IS GOOD!!!

A Long Day!

2009-10-08T21:52:00.002-04:00

Well, after a later than planned start time, Jr is resting comfortably in his room at the hospital and is on ALOT of pain meds. Doctor said that everything went as expected and was very happy with how it went despite the later start. JR said when he woke up from anesthesia, he was in so much pain that he thinks he saw God. :-) The plan is that if he can control his pain with pills, he can go home as soon as tomorrow. It will be totally a play it by ear kind of day. Thank you for all the prayers as once again, they were answered!
Now, nighty night for me ;-)

Quick update.....

2009-10-08T10:03:00.002-04:00

JR's surgery is at 2pm this afternoon. Please pray that everything goes smoothly and that all doctors and medical staff are on their "A" game today. I will post more later and after I get my hubby all tucked in tonight at the hospital. He will stay one night for observation. Love to you all!
Suzie

Dear God.........

2009-10-03T16:58:00.004-04:00

What the????????????

By the sign of the above question, I think that sets the tone for what I'm about to tell you. As our good friend Elaine said, you just can't make this stuff up! On Wednesday afternoon, I stayed home as usual with the kids and got Cole off to school. While Cruz and Lindsay were sleeping, I was able to get some more time consuming things done in preparation for our vacation. Got all of Lindsay meds drawn up for the whole next week and packaged all kinds of snacks for the boys for the long car ride that we had ahead of us. Sounds hunky dory right? Wrong. JR had a softball game that night and at his first at bat, he hit a ground ball and when he landed on first base, he hyper-extended his leg. So much so that he heard something pop. Not good. So, he hobbled to the truck and headed home. Now, before he left for the game, I told him, "Be careful. We are leaving for vacation on Friday and I don't need a handicapped husband." I should have told myself to keep my trap shut! So, he got home and at first I was very angry. (that is putting it lightly!) But, the longer he was home, the worse his knee looked. So, I decided that he needed to go to the ER just to make sure that it wasn't broken. After an extremely quick admit to the ER, they did an x-ray and a CT and sure enough, it was broken. A tibial plateau fracture to be exact. Perfect! After we were told that, the next words were, "and you will need surgery to repair it." Even more perfect! UGH!!!!! (I have been saying that allot in the last few days!) So, after the doctor visit yesterday, JR has surgery on the 8th to repair and insert 3 screws into his knee/leg. So, that also means that we can't go on the much needed family vacation that we had planned to take. Again......Perfect! ;-( Now, my dad was watching all three kids while we were at the appointment and I called him to give instructions on how to get Cole to the bus for school. (he goes to Kindergarten in the afternoon) He said ok and not 2 minutes later he called back and said that Cole threw up and will obviously not be going to school. Well, crap! Cole did complain that morning that his throat hurt but after a glass of water, it didn't anymore. Cole sleeps with his mouth open and that complaint happens quite often. He also felt a little warm but he also sleeps under a ton of covers and was certainly comfy when I went to wake him yesterday morning. So, because of this, I called the pediatrician and they were able to get us in ASAP and luckily they always will from now on because of the princess. ;-) I wanted him checked for strep throat. Sure enough, after the nurse swabbed him, the doctor came in within 5 minutes and confirmed that he did indeed have strep. Perfect! I NEED A VACATION!!!!!!!!!!

On a better note, Happy Birthday to my brother! Dan, I hope your having a good day!

Home is where our hearts are!

2009-10-02T15:05:00.010-04:00

Patti did it again! Enjoy the latest photos of the WHOLE family at home! A very Happy Birthday to my Dad and Grandpa today!!! Sharon Yoder, too! ;-)

http://www.pattisportraits.com/clients/index.php?do=photocart&viewGallery=1187

I will update all of our exciting happenings later on tonight if possible. You're gonna want to read this one! ;-)

Love to you all!
Suzie

One Year Ago

2009-09-26T17:58:00.006-04:00

Cole is 6!!!! He turned 6 on the 23rd and I cannot believe it! This time last year, we sent him on the vacation with the Winter's to Disney that the whole family was intended to go on. Disney will always be there.........HAPPY BIRTHDAY COLE!!!!!! We love you!

Cruz playing with his sister. Just before this photo was taken, he was lying on the floor with her, had the blanket covering them both and they were watching Sponge Bob together. Too stinkin' sweet.

"Really, I do like this new toy!"

Smiles at lunch time. Trying not to gag on my cereal and bananas!

Watching Maggie talk to her. She must have been interesting! ;-) So serious!

One year ago, JR and I took Lindsay in for her heart cath and never thought that that would be the start of this crazy adventure! Praying and thanking God for having her today. 293 days later, we were able to bring her back home and have begun to experience allot of "firsts" with the princess. We are so eternally grateful for this shot at life for her. She has grown physically and developmentally since we have had her home and feel completely blessed to be able to witness it. My heart has been heavy lately because I have been thinking allot about the donor family. We need to write "the letter" to them, but I have been waiting for the right time to do that. When will that be? During the holidays? I don't know. That would be incredibly tough for me to read if I were in their shoes and still grieving over the loss of a child. I can't even imagine what that is like yet, we were almost in that position. I still cannot believe what a miracle it is that she is here. Very surreal and I just don't know how to explain that feeling to you. Maybe someday I will have the perfect words for it but for now, we are soaking up every minute with her and the boys!

Lindsay has not made much progress with eating solid foods and maybe will need some more intense therapy on that, but for now she is getting PT and OT once a week here at home and really has done quite well considering. She has begun to sit up from a laying down position and sooooooo close to crawling. Our guess is that she is about 6-7 months behind other children her age. Maybe even a little more since she had her coding incident in June after the transplant. Man, can you imagine if she hadn't had that set back? She would be racing down the lawn with her brothers by now! Her eyes are getting better but we do know that she is definitely impaired in her right eye and it still is not centered as it should be. We are still waiting on an appointment with the U of M opthamologist that visits here in town to see what that next step will be. Lindsay is now up to 21 pounds and looking as chunky as ever! She is starting to metabolize better and thus her medications have been increased slightly. Mainly her tacro. (one of anti-rejection drugs) She has been put on a supplement of iron and continues to get blood draw once per week to check her levels. Those are getting easier but some are still a little tougher that others. All in all, we are on a steady track here at home!

Now, back to those "firsts" that I mentioned above. Of course you know about the first boat ride at the lake which was super exciting. Lindsay has also been to a restaurant for the first time now! Of course we were super cautious about her touching the table and we went on a Sunday when it wasn't crowed so it worked perfect. We are starting to get out more which is more "normal" and it feels great! She has been to her first U of M football game party (at the Winter's) and to watch Cole play flag football. Everyone was so excited to see her out and about and are just amazed that they are actually looking at her in person! Another one of her firsts that is up and coming is to see the ocean. Yes folks, the Dean's are going on vacation!!!!!! The whole family will be headed to South Carolina and will be enjoying time together playing in the sun, sand, and water. We will also be meeting with some VERY special people down there too! ;-) I think y'all can guess who that is!! I am so excited, I can't stand it! I get emotional thinking about it. All of us heart families have been through so much and when we get an opportunity to actually meet them face to face, well, I just can't express to you how much that means to me. Of course I will be updating while we are away, so don't worry ;-)

Thank you from the bottom of our hearts for all of your support throughout this adventure and we hope to continue to share with you all of Lindsay's progress. God Bless each and every one of you!

Heart Blessings and Love,

Suzie

Home.....

2009-09-15T10:59:00.002-04:00

A preview of last nights photo shoot with Patti! More to come in a few weeks! YEAH! i could just cry.........SO HAPPY!!!!!!!

This and That........

2009-09-08T22:28:00.008-04:00

This weekend was definitely fun-filled! JR and I went to the U of M game.....by ourselves might I add, and Sunday and Monday we had a mini vacation at the lake! The boys fished, we ate pizza on the boat (always a hit!) and got to spend quality time with the family. It was a picture perfect weekend to boot! Aunt Marva (Lindsay's great-grandma Lindsay's sister and my great aunt) was able to come out and I got this great picture of the two of them. So sweet. The weekend is not complete without fishin' pictures to show off! This was Cole's bass that he caught. It was only 13 1/2 inches so it wasn't a keeper but it sure made his day by catching it! We tried to put it in this bucket but the fish flew out. We then went to a cooler until we could measure it. ;-)

Now, this scene made me tear up. My baby in her first life jacket and getting ready to go on her first boat ride! WOOOOOHOOOOO!!!!! Thank you GOD! Not a peep came from her on the ride. I'm glad she liked it because there will be much more of that in her future! (mommy and daddy like it too!) And, no Meg, no swimming in the lake! ha ha

Cruz wanted a piece of the action too. This is the bass that he caught.....all by himself!!! It was funny because after the excitement of the catch, he casted again and after about 2 minutes, he said it was taking too long and left the pole right on the dock with the line still in the water! Comedian, this kid! Oh, and he kissed the fish before he let it go. Too cute!

This photo was on game day! Go BLUE!!!!!! (Love the bow blogger friend!)

Rubba Dub Dub. Three little monkeys in the tub! We have waited so long to get this picture. (Um, can you tell that Lindsay hasn't been sunbathing?? ha ha) Yeah, again, crying! We are just overflowing with joy, I can't even describe it! Life is good! (that nose crinkle is for you nurse Jen!)

One other thing I wanted to share with all of you that will probably set you back a little. Our sweet, sweet, almost six year old was talking about his birthday coming up at the end of this month. So, we got into the discussion of what he wanted to do for a party, if he even wanted one. This is how the conversation went......

Mom: " So, Cole. What would you like to do for your party?"

Cole: "Um, I want to have a car show for my birthday." (JR takes Cole to allot of car shows!)

Mom: "You do, huh?" (I'm thinking, now how in the heck can I pull that one off!!)

Cole: "Yeah, you know like some car shows get (he meant to say raise) money and then give it to people? I think we should do that and give the money to the heart babies. You know, like people did for Lindsay?"

Mom: " Oh, Cole! (crying of course!) I love you so much buddy!"

Well, needless to say, the kid "gets it". WOW! If anything, this whole experience has taught him that giving is a wonderful thing and that people really appreciate it, as we do today. To all of you, you had a hand in teaching Cole how to give. This is a lesson that will stick with him for a lifetime and we are so grateful for that. So, next year, mark your calendars that sometime in the fall, we will be doing a fundraiser for heart babies at Mott and the event will be a car show per Cole's request! I want it to be HUGE so committee, get your thinking caps on and as Ty Pennington says, "Let's do it!!!!"

OK, now that you have wiped the tears away, I have one last item for this post. I got "The bill" today...........

293 days room charge: $791,047.00

Pharmacy: $122,678.20

IV solutions: $53,390.20

IV Therapy: $190.00

Medical-surgical supplies: $467,056.00

Sterile supplies: $13,795.00

Take Home supplies: $26.96

Pace Maker: $2,246.00

Laboratory: $361,805.00

Pathology Laboratory: $313.00

Diagnostic x-ray: $21,462.00

Nuclear Medicine: $1,109.00

Cat Scan: $2,466.00

Operating/Treatment RM: $115,678.00

Anesthesia: $23,052.00

Blood Storage Processing: $16,823.00

Imaging Services: $506.00

Respiratory Services: $61,154.00

Physical Therapy: $9,690.00

Occupational therapy: $6,990.00

Pulmonary Function: $62,622.00

Cardiology: $83,835.00

MRI: $3,206.00

Recovery room: $919.00

EKG/EEG: $4,557.00

EEG: $5,775.00

Organ Acquisition: $80,000.00

GRAND TOTAL: $2,312,388.36

One happy baby at home in our arms, PRICELESS!!!! God is good!

Now, I thought long and hard about posting this and it is just on here to show what it took to keep our baby! In our eyes, no matter how crazy the cost may seem, the total number will never matter. Even if we had to pay this out of our own pocket (good luck with that by the way! ha ha), we wouldn't change a thing! No matter what we went through, what she went through, and how long it took, that number will never matter. We have our baby thanks to the medical staff, all of you, and God, WE HAVE OUR BABY!!!!!

That post tuckered me out! More photos to share soon and more of an update on the princess.

Heart Blessings~

Suzie

Lovin' Life!

2009-08-31T14:02:00.005-04:00

AHHH. A beautiful day at the beach! Bill and Elaine Burdick graciously invited us out for the day and boy, am I sure glad we went! Yes my southern friends, THIS is Lake Michigan! Pretty nice huh? It was a lot to tow with one person for an outing, but I got some sun and even a swim in the pool! As I said above, Lovin' Life!

OK, this one is for you Kyle, and for my old twirling friends! Can you believe this shirt?!! ha ha Ashley found this for Lindsay before I even had her. Too perfect! (even though the "twirl" on the shirt probably wasn't intended for baton twirling,but it does to us!)
God is good! I miss you Tommy!

My precious baby's first time to the beach! Although she didn't touch the sand, (not yet anyway!) Lindsay enjoyed being out in the fresh air and listing to the sound of the waves crashing on the shore. Oh wait, that was me enjoying it! ha ha Can you tell that I needed this?!!

Cara gave Cole a little lesson in body surfing while we were in South Haven and after that, we couldn't get him out of the water!

Cruz wanted nothing to do with the water. He was entertained just playing in the sand. I LOVE this photo of him!

Now, this one I will cherish forever. At Cruz's birthday party, we were surprised with some visitors from Pensacola! My brother Dan, and my nephews, Braeden and Camden, flew up from the south to visit. This enabled us to get this great photo of all five grandchildren with great-grandma and grandpa!

Cole getting some playtime with his favorite sister!

I hope I haven't sent ya'll (getting ready for OUR trip south!! ha ha) into photo overload! Enjoy!

Love, Suzie

Birthday Boy!

2009-08-21T09:04:00.004-04:00

Happy 3rd Birthday Cruz! We hope you have the best birthday yet!

We Love You!

Mommy, Daddy, Cole, and Lindsay

Enjoying the normal baby things

2009-08-20T13:41:00.004-04:00

I would like start off by sharing with you the present that Lindsay received in the mail today.

This beautifully made baby doll came from the people of Baby Be Blessed. They were generous enough to feature Lindsay as there "Give a Blessing" recipient for the month of July. Because she was nominated, not only was a lot of money raised for the Lindsay Dean Heart Fund, but she is also eligible to received one of these amazing dolls that can be made ANY way that you like! The stitching and detail is incredible and if you need a unique gift idea for anyone, this is what I would highly recommend. All I had to do was give a description of what I would like the doll to look like, and walla! The most precious part of this doll is the meaning and bible verse that goes along with. The verse is stitched on the belly of the doll and fits the princess to a tee! I think they nailed it when it comes to resembling Lindsay! I have the website linked to the blog, so please check it out!

See, Lindsay loves it!!!! I see in my future re-stitching the bow in the hair a few times. ;-)

This photo is one of the reasons I titled the post what I did. Now, this is a NORMAL baby thing! In the hospital, this pink duck was definitely NOT a hit but now she just loves it! I had a yellow one for the boys to bathe in when they were little so that they didn't slip and slide around the tub. It works great! I am so thankful that I could do this with Lindsay too!

This is the verse stitched to the belly of the doll pictured above. We decided to name her Lily because Cruz used to call Lindsay this. Cute huh? The bible verse is perfect for the princess!

Again, another vision of normal! The precious thing fell asleep in her saucer. I had tears in my eyes taking this photo. I have many photos of the boys asleep in their saucer. As you can see, Lindsay is adjusting and becoming a very healthy little girl and we couldn't be more thrilled! As the t-shirts say, "Life is good".

Love, Suzie

Gotta give the people what they want!!

2009-08-19T09:39:00.006-04:00

Cole and Cruz enjoying themselves on Uncle Dan's wind surfing board.

These t-shirts were sent to us by the Butcher family. Brittney's heart transplant was in December of last year. U of M zipper club supporters!!! Oh, and those crazy football hats. Too funny!

I found Cruz like this one morning last week. Sunglasses are of course, Lindsay's given to her by nurse Megan. Cruz likes them too! ;-) Stylish, dude!

Real enthusiastic about going to her appointment! ha ha Notice the new big girl car seat??

Yesterday morning before we left for A2. One of my favorites for sure! See her top teeth coming in?

Big girl! AND the very first time wearing shoes!! Can you believe it?! Well, I can. What has she needed to wear shoes for until now?

Lindsay can finally wear fleecy pajamas! Before with her hypoplast heart, she would over heat and start to have problems. Now she can stay toasty warm while she sleeps. An actual NORMAL baby thing! WOO HOO!!

We went to the lake on Sunday and Lindsay was completely content staying indoors in the air with Aunt Carol and Uncle Jeff. It ended up getting extremely muggy and was wise to keep her in while her brothers played outside in the water. She was still dressed for the occasion and had a great time!

AHHH, nothing like a hospital background.....again! Yes, this was taken during our two night stay at hotel Mott. She was feeling much better when I took this photo and we left the next day.

The joys of a g-tube feed! ha ha No, she didn't throw up, she just thought she would take the adapter out of her g-tube and suck on it! Well, not that great with the aim!

Yesterdays clinic visit at U of M went extremely well. Dr. G's (Gajarski that is, for someone that asked me about this a while ago) actual words were, "She looks fantastic! Keep doing what you are doing because she looks fantastic!" I couldn't help but have a perma-grin after that was said!

The only other thing that we have to follow up on here in town is with the ophthalmologist. A doctor from U of m comes down to the Kalamazoo office every 2-3 months and Lindsay will see him when he is here. They are concerned with her right eye not being completely centered. Obviously it is because of the damage to her brain because of the arrest in July. They are confident that she can see out of it, but it needs work to strengthen it. She may need a patch on the left eye to try and make the right eye work as it should. The left eye is definitely compensating the work load of the right. Overall, not too shabby I would say!

Back in the groove today and took her this morning for a blood draw. Praying that all levels are good and we can keep meds right where they are.

Answering a question from a few says ago from the Catlett family from Texas: Yes, she tests positive for VRE as well. This was found in her stool way back in October and she still tests positive for it.

I also wanted to take a minute to thank all of you that prayed for the Butcher family yesterday. All of those prayers were answered because baby Luke Graham Butcher was born yesterday happy and healthy and sooooo pretty!! All 8 lbs 2 ounces and 21 inches of him! Yes, baby boys can be pretty!! ha ha Send continued prayers for Rebecca's healing after her c-section and that they all can go home soon!

Heart blessings~

Suzie

Prayers

2009-08-17T22:20:00.002-04:00

We are preparing for a fun filled day in Ann Arbor tomorrow. (well, a little sarcasm this time!) This will be Lindsay's first official clinic day post transplant. That means that all testing will be done. Blood, ekg, echo, etc. We also get the joy of getting a swallow study, seeing the neurologist, and opthamologist. First appointment starts at 9am and last one is at 1:45. WHEW! I'm sure with a few visitors along the way. ;-) Yes, nurses, the princess will arrive around 8:45am! ha ha
Please pray that everything goes smoothly and pray that there are no signs of rejection. She hasn't indicated, but we never know.
The main reason that I titled this post "Prayers" is because I am requesting you all send them to a very special heart mom friend of mine, Rebecca Butcher and her husband Scott. Their little miracle, Luke, will make his appearance tomorrow and I cannot even imagine what a roller coaster of a day this will be for them both. So hard to imagine that this baby will not be Annabelle but then again so excited that because of Annabelle, Luke is here. Man, I just don't know what to say. I just shed happy and sad tears all at the same time as I'm sure they will do tomorrow too. I love them both dearly as because of them, I prepared for Lindsay. When they lost their precious baby girl, I fell apart as if she was my own. Now, they will have another beautiful gift from God and I ask that you pray for their strength for tomorrow. Strength to get through all of the emotion and enjoy every minute of what His plan has brought to them.

I know I don't have pictures up as promised (yeah, slacker I know!) but soon! Lots to do!
Love, Suzie

HOME!!!

2009-08-16T11:51:00.002-04:00

We arrived home late evening on Friday and Lindsay has been doing great! Her stools are back to normal and no more throwing up. She did test positive for c-diff (which explains the diarrhea and vomiting) and has been placed on the antibiotic Flagl for 7 days. This is something that pops up frequently in children or adults that have been hospitalized for a long time. Is 9 1/2 months a long time?? ;-)
We are FINALLY getting to all go to the lake for the afternoon as a family so I will post more photos of the princess later on tonight or tomorrow. Thank you again for your continued support and prayers. I will take just two nights in the hospital ANY time!!!!
Love you all!
Suzie

Plan of attack

2009-08-13T22:03:00.004-04:00

So, she has done fabulous with her 50cc/hour feeds since 4pm. At midnight, we start every 2 hour feeds of 100 cc's given over 30 minutes. Then at 9am, we will start with full feeds of 150 cc's every three hours given over 30 minutes each. By then, we can tell the doctors that she has tolerated them and maybe because they will be impressed, they will let us go home. No diagnosis yet and we all have a few theories, but who knows. Looks as if we will dc her reglan and possibly her lasix. We will know more tomorrow and pray that the feeds continue on this good streak through the night and on.
Sweet Dreams~
Suzie

***** Update (10:39 pm) Stool sample came back positive for c-diff. Just great! We might have to wait until morning to get the decision on what they do for antibiotics. Post transplant, VRE, and C Diff. Perfect! (yes, sarcasm again!) Maybe saving the Happy Dance for another day. ;-(

Feedings going good!

2009-08-13T18:28:00.002-04:00

Two down, and they stayed down!!!!! Third one went and then Miss thing decided to stick her fingers down her throat......so a little of it came up but the good news is that not all of it came up! So, other than her little stunt ;-), a-ok!
Update again soon~
Suzie

Feeds

2009-08-13T15:35:00.003-04:00

First feed is going. We are starting VERY slow at 50 cc's over 10 minutes. Cross your fingers that she keeps it down! Oh, and the diarrhea has begun. ;( Maybe it all is just a bug! I will update in a few hours.
Love, Suzie

Admitted

2009-08-13T09:30:00.002-04:00

After many lengthy conversations with doctors and nurse practitioners, we headed to Ann Arbor to get Lindsay checked out. She had started vomiting on Saturday night. After that incident, we then just proceeded with strictly g-tube feeds after her month long run on oral feeds. Things went fairly well on Sunday but with still a few throw ups. Monday was great! We stayed with all g-tube feeds and she did great all day. Then Tuesday came. Still vomiting and now it was getting concerning because we knew full well that she wasn't getting enough in as far as fluids were concerned. The most concerning thing though was that she was still vomiting with g-tube feeds. Now, our understanding was that she needed the g-tube to eliminate any possibility of throwing anything up! Well, not Miss Lindsay. She managed to do that as well! For those of you familiar with g-tubes, no, she does not have the Nissan wrap which wouldn't be shocking if it came up in discussion today or tomorrow. In the ER yesterday, a chest x-ray was done and that looked just fine. A g-tube x-ray was done with contrast and that looked fine as well. Our words exactly were, "Oh, crap!" Well, then what is the problem? IV fluids were started because as we all predicted, she was a little dehydrated. She is still on them today and looks like we will trial feed today to see if the extra fluid to plump her up a bit will help in the feeding department. In other words, thinking that the dehydration started to take its course on Saturday but she hadn't been tipped over the edge yet to not throw up everything. Besides the vomiting, she has been as completely normal! Just every now and then she will puke and then go about her business like nothing was wrong. What broke the straw for me was yesterday morning after the she threw up her morning feed of only 50cc's, she was starting to look a little pale and not quite herself, yet still smiling and playing. So, called Dr. G and here we are. Today will be all trial to see how she does after getting her fluids. Her lasix of course has been DC'd and I'm wondering if she has simply grown out of that and doesn't need it anymore. She was cut back from her 2x a day dose down to one and wondering if her one dose is now too much. Things that make you go hmmmmmm?? JR and I had our first experience of actually sleeping in the hospital room with the princess. That was fun! (sense the sarcasm?) With one very small couch and a glider rocker, I guess we made it work but both of us are extremely sore! Why did we stay you ask. Well, the Med Inn is full and we decided that since we weren't here for a lengthy stay, we would bypass RMH. AND there is a plumbers and pipe fitters convention in town and all hotels are booked or at skyrocketed prices that we aren't paying right now! Call us cheap, but rather than paying $120 plus a night at a simple Red Roof Inn, we will sleep in a room with the princess. And trust me, I pulled the travel agent card and no discount was given. ;-) Besides, we get more cuddle time staying at the hospital!
The docs will be rounding soon so I will update a little later.
Love, Suzie

Some firsts........

2009-08-04T23:46:00.002-04:00

As a mother of a girl for the first time, I have been waiting VERY patiently to do this.............. aren't they the cutest, and the prettiest, toes you have ever seen? ;-) Today was so good!!!

She was posing a little earlier this afternoon so I thought I would take advantage of the photo op. Isn't she getting chunky?!!! She is doing so fantastic! She has gained 2 pounds since we have been home already and has another weigh in tomorrow. AND look at those eyes! They have been focusing so much better since we left A2 just a few short weeks ago. She is also focusing in on things further away so all of this is extremely encouraging that her recovery is going well! WOOO HOOO! AMEN!

Yup. You can thank nurse Bethany for this bad habit! ha ha Too cute to not photograph!

The grin just melts my heart.......and her daddy's too. Lindsay is getting more "centered" with her sitting up like she was before transplant and her arrest. We also witnessed her getting on her knees. She is still working on the combo of the knees and pushing her body up with her arms. She'll get it soon I'm thinking. She has therapy once per week but we have been working quite a bit in between those visits.

Lindsay looks like such a big girl in this photo. Carlee's aunt Angela made this dress for her along with a few others. She even put zippers in the side in case she was still attached to machinery, she could still look as cute as ever. ;-) Angela, you are a clever one! As you can tell, being home is treating the Princess just fine. She is happy as ever and becoming herself again more and more everyday. She is getting stronger and is eating orally perfectly without the gagging and choking as she was doing pre-transplant. Her tacro and cell-cept levels have been a little low so we continue with the weekly blood draws until they are stable for a few weeks. I think they are off because she is growing so much now that she has that perfect new ticker! The downfall to the higher doses of meds is that she is stooling more and her bottom can get pretty tender. So far so good on staying on top of that. Her brothers are just loving having her home. They interact with her just great and she just love to watch them play. She received a doll (2 actually) from my grandparents and one of them giggles. Lindsay will look at it and giggle right with it. It is the cutest thing and I will try and video it and post. As you can tell, we are enjoying being home and getting into a routine. I think I have it down to where I like it and things are going smoothly now that Dr. appointments can be spread out more. We go back to Ann Arbor on August 18th for her first check up since discharge. This will be an all day event to do the once over on the princess to make sure everything is still a-ok. Please pray that that is the case. She is showing no signs what so ever of rejection and we are thankful. We pray everyday that it will be a good one and blessed that we have it with her. I have been long winded tonight so off to bed I go. More again soon~

Love, Suzie