At this time last year we were pretty much trying to survive day to day- Mae had been admitted to U of M for 23 days and, little did we know, we weren't even a third of the way through the admission. At that time she was just an infant, sleeping most of the day and oblivious to the medical teams that were surrounding her, machines that were helping strengthen her weakened body, nurses that kept constant watch, and family/friends who helped Ryan, the boys, and I make it through that long, difficult stretch.
Fast forward to today and the miracle that Mae is cannot be overstated. She is doing so many things that we were so uncertain of a year ago. She has a formula that she can drink, food that she can eat, the ability to crawl, roll over, and walk, sounds that babble from her sweet lips, squeals of delight that literally could bring you to tears, and the simple recognition of her family. Although we are realistic to understand that her medical future is still largely unknown, we are comforted by the many milestones she has met and the fact that she continues to grow and develop. God is good.
Results from Mae's swallow test last Friday confirmed that when she is drinking 'thin liquid' (formula, water, etc...) she is having episodes where the liquid is penetrating her airways but she is able to 'protect' them and there is no evidence of aspiration. Therefore, we will continue to feed her using a preemie size nipple to ensure the flow of liquid from her bottle is slow enough not to choke, gag, or cause aspiration. There will be a follow-up study done in two months.
Mae was re-evaluated by our local school district last week and she was found to be doing great in some areas and is showing delays in others. We will be creating a formal Individual Family Service Plan this week to ensure that we are getting all necessary resources to help Mae reach her full potential. Therapists and coordinators will be starting twice a week home visits with Mae in the next week or so. We are hopeful that these additional resources will benefit her.
Mae 'failed' another attempt at switching her formula to the Pediasure blend- We will continue to use her Ross Carbohydrate Free formula with the addition of fructose (which is what we have been doing.) She continues to be able to tolerate these feeds and is doing very well with the mixture. She currently weighs a little more than 21 pounds and her blood work this week shows that she is doing well with the switch of TPN to her dextrose hydration/medicine. Fantastic news! We will continue to have weekly blood draws so that the CHIRP team can assess her.
We went to a local apple orchard over the weekend and it was really great. All three of the kids love being outside in the fresh air and the simple fact that we can all be together is not taken for granted. As always, we truly appreciate everyone's prayers and kind gestures, we know that each and everyone of you have your own lives, and yet, you take time to check on us and pray for us. We are certainly grateful and blessed.
"I have told you these things, so that in me you may have peace. In this world, you will have trouble! But, take heart! I have overcome the world." John 16:33
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