HomeCURRENT UPDATESStatus Updates (Archive 2010)

Status Updates (Archive 2010)


12/30/2010 Merry “late” Christmas

‎Thursday, ‎December ‎30, ‎2010, ‏‎4:47:54 PM | smolby@gmail.com (Sean Molby)                        

Wow,   what a month we have had…so much has happened and we have been so busy. First   off, Tristan is doing great! He has not had any problems since his last   surgery but we have been busy, busy, busier, and busiest playing catch up and   such! Although T has been doing great the last week for us has been somewhat   bittersweet (I will explain in a bit)Tristan’s   recovery after this last surgery was the easiest yet. He was only in the   hospital for 5 days and I gave him a full month of recovery before I really   started working with him (hard) again. He still had all his OT/PT but we just   took it really slow…we are now almost a month and a half post op and the   progress T has made is astounding!The   biggest and most amazing feat is he no longer has his feeding tube! WOOOOO   WHOOOO J it took a couple of tries of him keeping it out but he has finally   done it! Now, he is still not really taking a bottle but I am able to spoon   feed all of his needed fluids in-it just takes quite a while…for the most   part that is what I am doing ALL day, feeding T-well at least it feels like I   am! J The fact that he is eating orally makes me speechless and he is showing   such wonderful progress that the need for a G-tube is, for now, completely   off the table! He has only been eating completely orally for about 3 weeks   but hopefully he will stay doing as well as he is. For now he takes anywhere   from 22-29 ounces of just formula/breast milk..oh ya, we started back on   breast milk and he is having no reaction so far! Yiippppeeee! Finally all   this pumping is paying off!-then he also takes anywhere from 2-4 jars of baby   food and then quite a bit of baby cereal as well. He is still not ready for   the bigger things like the puffs and stuff but he does like the Mum Mums and   teething biscuits- his favorite thing is to gnaw on celery! Go figure!!! J He   will take some food by bottle but he has to be in the mood for it. The most   he has taken at once is 3 ounces but he usually averages 1-2 ounces when we   try-but I will take whatever he is willing to do! He is still gaining weight   and growing so everyone is HAPPY!

He   is also finally sitting up by himself! He doesn’t last long; I think the   longest is about 5 minutes but considering how much of his life he has been   in the hospital and recovering I am surprised he is able to have any trunk   strength! Everyday he amazes me!

Gosh,   so much has happened. We now have a nutritionist for T, so that we can make   sure he is taking in what he needs! She is awesome. We have switched his PT   and OT to twice a week so we can play catch up but we don’t plan on him   needing that many sessions for too long. I still do my own therapy will him   everyday (PT usually twice a day and OT every feeding). They are still   planning on doing another cath sometime in January; his next cardiology   appointment is on the 12th so we will probably get a date then. GI   will see him in January as well just to follow up on how he is doing since we   reintroduced the breast milk back in. ENT has already seen him and won’t need   to again for probably another month or so. He still has his hematology   appointments; his next one is on the 5th. Hopefully we may be able   to get him off the Lovenox sometime soon.

As   far as the holidays went we thoroughly enjoyed all the time we got to spend   with the kids! And thanks to some very wonderful people who helped out we   were able to get all the kids gifts this year..we were kind of worried there   for a while. With only Sean working and all the extra bills we have been   really struggling lately! But my dad’s office had a surprise Christmas party   in honor of Tristan- I got to meet some very wonderful and amazing people   that day and they were more that generous. It was actually quite a miracle as   not even an hour before I was asked to go to his office I had just broke down   crying with my mom, freaking out with how we were going to manage everything   this year! Then around that same time we got the astonishing news that   Tristan was selected to have Santa come and visit him at home since we were   not able to get him out. This was all in thanks to the KC originated magazine   “Parenting Children with Special Needs” that was another awesome experience   and a blessing as we were not even going to try to get Tristan out for Santa   pics… it just wasn’t worth the health risk to him! We still are not getting   Tristan out unless necessary but he is now up do date on his   immunizations…….. Finally! To top that visit off, the kids each got a special   gift from Santa and from the magazine! And thank you so much to Ed and Ann   Clemmons who came back and gave us another very unexpected and beyond   appreciated donation! I can not begin to express how wonderfully blessed we   were this year. It makes me speechless to know how many wonderful people we   are truly honored to have in our lives! This has been one of the most   emotional, miraculous, and best Christmas’ I have ever had!

But   with the sweet comes the sour and within this last week there have been some   losses in our CHD world. Two little angels are now up in heaven, they were   both HLHS like Tristan. One was 2 years old and the other only 10 days…I also   know countless heart families that had to spend the holidays in the hospital   waiting, watching, and wondering what tomorrow would bring. If everyone could   just say a quick prayer for all of those families out there who are   struggling.

It   is hard to imagine how difficult this life is until you are living it. But   even with all the difficulties and sorrow I can’t say I regret any of it.   There are countless wonderful people I have been fortunate enough to meet   that I would otherwise not have and the ones that were already friends have   only become closer. My little Tristan has done this. This wonderful thing of   bringing so many people together! He has made so many remember how thankful   and grateful they should be for even the little things. I have been left   speechless more times than I can remember. I have cried more, laughed more,   and loved more all thanks to our little heart warrior who with everyday   reminds me what a miracle life really is!

I   can honestly say I am humbled to have been chosen as his mommy and I would   not want it any other way! He has brought so much joy and wonder back into   our lives- he has shown the good that are still in people out there and for   that I am thankful.

The   year 2010 has been the absolute hardest year I have ever had to make it   through and at the same time it has been the best most rewarding year as   well. And I am thankful for it all!

I   hope everyone enjoyed the holidays and that you treasured the moments you   were given with all the people you love and care for. May the New Year bring   you all even more happiness!

MUCH   THANKS and Biggest heart hugs ever ♥Christy


‎Wednesday, ‎December ‎22, ‎2010, ‏‎1:43:17 PM | smolby@gmail.com (Sean Molby)

So   almost a month since my last post and we have been busy, busy , busy. Tristan   still continues to amaze us with his strength and is recovering remarkably. This   is just a quick update as I dont have a lot of time but I will do a really   good one by the end of the week. So much has happened in the last month and   we have been so blessed and fortunate. Happy holidays everyone!!luv   ya Christy


Pulmonary Artery Reconstruction

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