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January 18 - Here is wishing everyone a wonderful NEW YEAR!

posted Jan 18, 2011, 1:43 AM by Sean Molby   [ updated Jan 18, 2011, 1:48 AM ]

The New Year has brought us even more than we could have expected thus far. Tristan is doing remarkably well given all that he has been through and all he still has to face. We have lots of plans and so much going on and I love every minute of it.

 

Today marks 2 months post op from T’s last heart surgery. And for the most part you would never guess it. Tristan is doing so well and has progressed so much, even over the last 3 weeks. His home therapy re-evaluation was last Friday and amazingly T reached ALL of his projected goals from his last eval. The next 6 months will be some big mile markers for Tristan and we are expecting quite a bit from him. Our new goals are for him to be eating table foods, crawling, standing (he still won’t place any weight on his legs), and drinking independently from a sippy cup. Seems simple but he still has a ways to go.

 

He has grown so much in the past few months. He is now about 20 ½ pounds and 28 inches. He still is eating all orally! And the G-tube has “officially” been taken out of the picture. He had his cardiology appointment last Wednesday and Dr. Kaine was beyond happy! Along with saying there would be “NO G-TUBE” he cancelled Tristan’s March OPM (swallow study) which was something that was kind of making all of us a little nervous, only because T has certain ways he likes things done and is not so cooperative if they are altered outside of what he is comfortable…that being said we were really nervous that if he was not comfortable at the swallow study he would not do well and then we would be back to arguing about how things should be done, I was not looking forward to that so I am thankful that is one thing we will not have to deal with again!

In addition to that wonderful news, for the first time EVER for T they were able to get a clear view of his left pulmonary artery during his echo. This is HUGE…because of this view and what we could see they have taken his next cath procedure off the table as well. He will have to have one sometime in the future but for now he will remain hospital and surgery/procedure free for hopefully the remainder of the year. I can not begin to explain how much of a relief this is. I wasn’t concerned so much with the cath procedure as I was Tristan’s response to being re-hospitalized and how it would set him back in recovery. BUT thanks to our awesome echocardiogram techs who kept searching until they got a perfect view we no longer have to worry about it. WOOOOWHOOOOO!!!! J

 

Also, he will be officially off of his Lovenox shots on March 2. CAN NOT WAIT!!!! The results came back from his genetic screening for genetic blood clotting issues and everything came back fine….no genetic cause for concern. Thank goodness! And he only has one more level to be checked and as long as it comes back normal he will not have to have anything drawn again. NO MORE BLOOD DRAWS!!!! Now that is something to celebrate J

 

So now are big concerns now are OT/PT/nutrition. He still won’t take a bottle and the little he was taking he now refuses. We are thinking this is because he is teething and he is now associating his teething pain with the bottle-URG….he is still taking what he needs by spoon so I am thankful for that and he is starting to take water from a sippy cup and Nicole, his OT, got him to take his milk from the sippy cup last visit so that is progress. Right now I don’t care how he takes it just as long as he takes it. He is doing so much better at eating now. And even had his first oatmeal chocolate chip cookie last week…to our amazement the little pig ate the whole dang cookie and LOVED every bite. I included some pics attached to this posting he was so fun to watch. Now every time he sees a cookie he thinks he has to have it, IT IS WONDERFUL!!!! We will start introducing some more table food later this week. Mainly just cooked carrots, sweet potatoes, avocado, bananas, and other similar foods, let’s hope he likes them J

 

His physical therapy is going good as well. He now sits up by himself and for long periods of time, in fact most of the day. He finds it quite entertaining that he can play with his toys and reach out to grab them all on his own, he enjoys it so much the little turkey is getting horrible at taking his naps cause he does not want to stop playing. He still won’t roll back and forth from tummy to back and vice versa-he can, he just won’t but he is tolerating being on his tummy better. He is still kind of sore from his last surgery so we don’t push him farther than he is comfortable. He still will not put pressure on his feet but when Jaci does some leg stimulation he will stand assisted for a couple of minutes. She is looking into getting him some stuff to assist him in that and is hopeful that after only a few weeks of I guess what you could call “standing therapy” that he will be doing it with out the aide of equipment (fingers crossed).

 

Nutrition wise we are working on him taking actual table food and having that be the majority of his diet. It will take a few months but he is so far enjoying it and now fights to feed himself and gets very frustrated at me when I won’t just give him his bowl of food to eat all on his own. LOL I think he would gladly spoon his milk all over the place in an attempt to do it all on his own. I know have to start his meals with two spoons. One for me to feed him and one for him to try and feed himself, I can’t help but smile and be so grateful that he is doing so wonderfully well.

 

 Overall we are very happy with were Tristan is and although he is not “age appropriate” in development if you make the needed adjustments for the all of his hospital stays and surgeries and such he is far more advanced than he should be…they flatter my ego by saying it is cause I work so diligently with him but as much as I would like to take all the credit it is really Tristan who is the one who deserves it. He is such a determined little boy and it is his determination that has gotten him surpassing, by all standards, what they never thought for him would be possible! I am constantly amazed and awed by how strong of a little man he is. He has made me the proudest mama in the world, all my kids have. Despite all that my kids have been through they have been amazing and there could never be a prouder mom than what they have made me! I have been truly blessed.

 

The biggest news of this year is I am organizing a fundraiser for CHD research and awareness. It has been a bit overwhelming but I am beyond excited and I have recruited some wonderful heart mom friends to help me out. There are no set details as of yet but there will be soon and I hope all of you will show as much support with this as you have will Tristan these past 9 months. This cause is so important and the money raised will benefit thousand of babies just like T.

 

Again, I can not thank you all enough for all of your thoughts, prayers, and friendship. As scary as last year was I am looking forward to what this year’s future holds.

Bug heart hugs to you all  Christy

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Jan 18, 2011, 1:47 AM
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