Our little HLHS Hero
|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 | firstname.lastname@example.org (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