Hi Friends!
Quick update about our Monday appointment: The Orthopedic Surgeon walked into our patient room and gasped, "WOW! That Lutz sure knows what he's doing!" Anyone who knows our amazing, caring, wonderful geneticist Dr. Lutz would agree, but wow it felt good to have someone stop in their tracks at Evie's improvement. Our appointment went well, one highlight being x-rays. This was actually a "low"light for Evie since she absolutely hates x-rays, but the results were exciting. When we compared Evie's x-rays from September until now, it honestly looked like a different child. In September her upper leg bones were bowed about 30 degrees and were short with very broad ends. Her bones this Monday looked longer, straighter, and all around stronger. Don't mistake "stronger" for "strong"... her bones are still very undermineralized and weak, but she is making unbelievable progress. Thanks for praying! The doc also agreed that we can do a minor surgery on Evie when we feel the time is right, to lengthen the tendon in the back of her foot so she will be able to flex her foot (: Exciting!
Secondly, I scheduled Evie's repeat overnight trend oximetry for tomorrow night. They will come around 7pm, hook her up to the monitors, and monitor her until Thursday morning. I'm guessing we will know the results by Friday, or early next week. Pretty exciting to think about taking Evie's oxygen off. I had a great conversation with my second cousin's husband (I'm being serious!) at my other second cousins wedding last weekend, and he asked why I wanted Evie off O2 the most. I can see why people would think it would be carrying around my jetpack (her tank) or the 24/7 rhythmic whirring of her concentrator at our house or people tripping on her tube, but honestly I just miss her face... so. badly. I've said it before, but just to see her little smile light up with no plastic drawing a line from ear to ear, ugh, I just miss it. When I look back at where we were last year at this time, I remember that Evie has healed and improved incredibly so I may just need to be patient, but wow do I miss her face. We had less than 4 months before she had oxygen needs, and I'm ready to be oxygenless again.
So you can pray for me, I have my hopes up way too high for this oximetry tomorrow. I will be fine either way, and there's no question that we always do what is in Evie's best interest, but we are so so so so so very close.
Thanks for loving us, hopefully I'll be back soon with good news.
Love you friends!
I was exactly the same with wanting Maddy's feeding tube out as well. I never even saw her face with nothing on it until she was nearly four months old...
ReplyDeleteI so get what you are saying about seeing your babies face. My boy just came off the O2 yesterday at 15 months old (he had 2 months off early last year). I keep looking at him and getting a surprise seeing his lovely wee face :) I don't think people really understand how life altering it is to get rid of those tubes and bottles unless they have been through it. It's like a new beginning to life. I keep having moments when I think "Yay we can do ...... now" like walking out to the letterbox together.
ReplyDeleteAnyway my thoughts are with you guys and I'm excited to hear the news that Evie will be tube free soon!
When our little guys Rowan was off oxygen for the short periods at a time that he was we used to call him our "cordless" baby. :) We were in the NICU for nearly four months so being able to walk from room to room with him with out a "jetpack" or oximeter, or IV is an amazing bout of freedom!
ReplyDeleteHere's wish you good luck!
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