So it is many months later and Grace is truely doing great!! I have ben super busy since work has started in August and it is hard to believe that so much time has passed. Grace has gone from slowly falling off the growth chart to getting back up to the 10-25th percentile for weight. She gets 27 cal formula and we add formula to her baby food to increase calories as well. She has been receiving physical therapy and speech therapy and still is holding out on crawling. She is now 10-months old and never turns blue and has overcome 3-weeks of colds back in December. This was a huge milestone to make it through being sick and not having to be hospitalized one.
We had a follow-up cardiology appointment this past week and the tentative plan is a possible cardiac cath procedure to check the pressures in her heart. Grace's tricuspid valve in her heart is still considerably leaky. At this time the doctors are still considering a Glenn procedure (which is open heart) or leaving her with her heart functioning the way it currently is. Boy this really bummed me out because I thought the Glenn procedure was out of the picture, but it is not. It is hard to believe that she may need more surgeries especially with how great she it doing. I really thought we were not going to be talking about surgery for another 2-5 years:( Now we wait. The cardiologist is presenting her case to the surgeons and the cardiologist team at Hope on Wed., so we will not know what the plan is until after that date.
Sorry I have negleted the blog....but I do want to keep this going for everyone...so I will post when possible.
Gavin on the other hand is doing great. He loves going out and about and Keith just took him to the grocery store. He is trying to say so much but he is a bit hard to understand. He is now 20-months old and really enjoys having control over his environment. He loves Thomas and koves picking videos to watch. He picked out some Thomas pajamas with Keith yesterday!! This is super exciting to wathc him grow up.....even though I wish sometimes he would stay baby forever:)
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Awww...So happy to hear/read this update! I will pray that the surgeons feel she can continue on status quo right now! I hope she does not need the Glenn right now and can continue to wait and hold off on it.
ReplyDeleteGlad that you are keeping busy and that things appear to be going as well as they are! I miss ya! I hope that everything else is going just as well! :) You all continue to be in my prayers.
Keeping you all in our thoughts & prayers! We love you all!
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