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January 29, 2011~ slow but steady

posted Jan 28, 2011, 10:39 PM by Sean Molby   [ updated Jan 28, 2011, 11:35 PM ]

This month has been somewhat bitter sweet.

 

A lot has happened since the last post. To start, I will say that Tristan is doing very well! He is making more and more progress every single day. I can not begin to express what a true warrior he is. He amazes and humbles me. And I am more proud than I could have ever imagined being!

 

It has been a rough couple of weeks as both Sean and Briahnna have been really sick. Sean had some sort of stomach virus and poor Briah got sick on her birthday L and turns out she had strep. Fortunately we have seen nothing from Tristan or Ella that indicates they were exposed and surprisingly I have not gotten it yet either but I am definitely keeping my fingers crossed and spraying the ENTIRE house with Sanox (it is similar to Lysol-but better). It helped that Briah quarantined herself in her room and made sure she wore a mask anytime she left it-poor thing, cause those masks are very uncomfortable! They are now both finally on the mend and things are slowly getting back to normal.

 

Physical therapy is going really good. He is starting to put more pressure in his legs/feet so he is standing longer every session. Jaci will be bringing a stander for him to try next week. It is suppose to help him with his strength and balance. She is confident that we will need it for less than a month before he gets the results she is hoping for, so that is good and exciting news. T still hates being on his tummy but we are pushing him more and more so that he can start to be more mobile. The little turkey still refuses to roll over even though we all know that he can; BUT I have a feeling that won’t last much longer because he is so inquisitive and he loves to play and gets really frustrated when he can’t get to a toy he wants. He is already reaching out and putting himself on his tummy he just gets so mad after he does it that he forgets he wanted the toy… LOL J but I know he will figure it out, I don’t have worries there. He is already doing so awesome and is barely 2 months out of recovery from his last open heart by-pass and since he had his other one barely 12 weeks before that I think he has earned the right to just take things slow!

 

Occupational therapy is going a little slower. We started his two sessions a week so Nicole can work on his oral eating and motor skills. He is doing really well with his motor function and there are really no concerns there but he is still being a little stubborn when it comes to drinking from a bottle or sippy cup. Nicole is ordering a new cup that is just a regular type cup but has a controlled flow since T loves to drink out of big boy cups. Our hope is that he will take to this and then he can stop having to be spoon fed his breast milk/formula. I think this cup may actually work but even if it doesn’t I don’t really mind spoon feeding everything-I would do anything to avoid him having to go through yet another surgery. We are also wondering if his stubborness may be from the fact that he is teething and since he already has an oral pain aversion from being intubated for so long that may be why we are having issues. Tristan now has two teeth on bottom and four teeth on top-the four on top all popped out within a week of each other, poor baby!

 

He is eating and gaining weight as usual. He is just over 21 pounds and about 28 ½ inches now. That is one area we have never had problems with, thank God! I know we are beyond fortunate as most heart kiddos have major issues with thriving. We have started trying more and more table foods and of course T’s favorite is still homemade oatmeal chocolate chip cookies but he is really starting to likes Oreos too. J For those of you that don’t really know me you can not imagine how hard it is for me to give him junk food-neither one of the girls even knew what sugar was until there 1st birthday but I will give him anything if he just shows interest in eating it and he definitely has a sweet tooth. He also likes sweet potatoes and HM chicken noodle soup. J

 

Overall T is doing wonderfully. However we have had a very difficult passed two weeks as we have lost several loved ones. A very difficult loss for me was my Uncle Dave, who passed away on Saturday, January 22 from a heart attack. He was only 51 years old and it was a huge shock to our entire family. It is especially hard for me as I was really close to him growing up. He had, this passed year, moved down to Las Vegas where the majority of my mom’s family is and because T is still so fragile I was not able to go down with everyone else during this difficult time. They all understand but it is still really hard. I am proud to say however that in honor of my Uncle Dave-as they are positive this is what he would have wanted-my family to my surprise told me that they will be directing donations in lieu of flowers and such to be sent to the I.HEART.TRISTAN.FUND . This is such a blessing especially as we have begun preparing for the CHD fundraiser that I am coordinating that will be in April of this year.

 

I am so anxious to give back to Children’s Mercy, help out some MUCH needed research studies, and then to also be able to assist some local CHD families who are struggling that ANY amount received will be greatly appreciated! It will also help to get the ball really rolling with the fundraiser- of which I hope EVERYONE local can attend and those not local will at least consider donating! This will be the first of a yearly CHD awareness fundraiser that I plan on doing. (k, done with my advertising plug).

 

Sadly, in addition to my Uncle Dave we have lost eight more little angels to a Congenital Heart Defect over the last two weeks, and these are only the ones I know about from the many heart friends I have been blessed to meet and who are traveling beside us in this journey with Tristan. It saddens me more than you can imagine growing close to these wonderful people and then morning with them as they lose a part of their life to such a deadly disease. It also keeps a constant reality check as we are always aware of how fortunate we are to still have Tristan despite the odds against him. Tristan is a fighter but so were all of these other precious babies- and as heart wrenching as it is, sometimes even if these angels have more determination than most, a strength that astonishes us, and are being sent all the prayers in the world, it is still not enough to get them passed the difficult situation they were born in. It is so hard to say how proud we are of Tristan, which we are, but still have to face another parent who was just as proud of their warrior who is no longer fighting their battle with CHD. It makes me feel as if I diminish the fight their child struggled through. So if anyone whose warrior is now an angel is reading this please know that I mean no disrespect as I praise T for all of his progress. I can only imagine how difficult it is for you. Please know that I respect all that you have been through and am amazed at the strength you provide to all of us who are still fighting despite your loss. You are all heroes to me. And your little angels are so lucky to have been blessed with you as a parent.

 

Until next post hug your kids tight tonight.... and every night. Don’t miss a single chance to tell them how much you love them and how very special they are to you. Life is never what you plan but it IS what you make of it. PLEASE, MAKE IT COUNT!   Christy

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