Hi Friends (:
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Sorry it has taken me so long to post this, the MRI went great! It was so so so hard for me to say goodbye to Evie when they took her into the MRI room, but it felt good to cry it out for a few minutes and remember what a blessing it is that I get to hold her close every day. They went ahead and intubated, and she was extubated right away with no problems. It is SUCH a relief that we didn't have to stay in the PICU overnight, I was thinking that was highly probable. She has been doing good since we have been home, still very congested, but her happy little self.
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We are still waiting on official results. We have some preliminary results, but we won't really know how to interpret them until we hear from the Neurologist or Neurosurgeon. It seems that one of Evie's fontenelles (soft spots) has prematurely fused, and we may be looking at Craniostenosis. Not a great diagnosis, but not necessarily terrible. She doesn't have any masses, or hydrocephalus (build-up of fluid) which is great.
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When I hear official word from the docs I will let you know!!! Thanks for praying, I felt God's hand of protection over me when a friend from the PICU took the time to come down where I was waiting and make the time go quicker. It was not only great to see her, but knowing she took time away from her family to see me was humbling and wonderful.
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Love you friends!
Lindsey -
ReplyDeleteCraniosynostosis is what David had surgery for at 6-1/2 months. Ing and I know just how you are feeling with this newest possible diagnosis. If you have ANY questions or want to talk to someone who has been there, please let us know. The good news is that the neurosurgeon and craniofacial surgeon at Children's are wonderful - David had a follow-up appointment with them and we were very happy with his care. In the meantime - hang in there - you are in our prayers.
Ing, Laura, & David
Lindsey,
ReplyDeleteI'm sorry it has taken me awhile yet again to catch up with your blog! Sonya is recovering nicely from her rodding surgery, but it was still a crazy week. Your family is so strong, I know you will get through this! I've heard of some other kids on my POLP (parents of little people) support group who have had this diagnosis and they pull through. Funny how Sonya has the complete opposite situation with her soft spots... they are still wide (and I mean really wide) open at over 2 years of age! We have to be really careful handling her noggin! We wish you a happy belated birthday!!! I love all the pictures as always! I loved your post "One of Many". Your family is an inspiration for many of the many! Hang in there, you guys are doing a wonderful job traveling this journey! Many hugs sent your way and many prayers sent up for you all!
Oh, P.S. The weight gain is fantastic news!!! I know what you mean about not wanting to know what the average child weighs... Seeing as how Evie is only 8lbs less in weight than my Sonya who is 2 years old, I'd say Evie is doing wonderful!!! :)
ReplyDeleteYay! SO happy that she made it through without a hitch. Praying that the drs will read the diagnosis correctly and that He will provide the right gaps to be filled!! We love you friends :)
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