We are back home and that has been super nice. We really missed Jackson.
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| Helping Uncle Harry put Christmas lights up! |
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| Reunited! |
Wendy came this morning. I know we have said this a MILLION times but we LOVE Wendy. We LOVE C's entire Early Intervention team. Wendy is one of the reasons I have stayed semi-sane the past year. Anyway, I digress...we are grateful that Charlie has not lost any skills and aside from being super clingy and cranky on and off she is doing really well considering she isn't even a week out of surgery. Her head is pretty swollen but not as bad as last time. A new thing this time around though is that she notices her incision so she is CONSTANTLY trying to rub it.
We were finally able to talk to C's neuro today. In the hospital we only saw him immediately after surgery, after that we saw the on call neuros. We are a little bit discouraged by the seizure activity we have seen since the surgery. We understand that it is common after the brain has had trauma and all the swelling that is going on inside C's little head BUT when you put all your hope and faith into something and put your little girl through ANOTHER brain surgery you expect BIG results...not seizures. Dr. M is not discouraged by what we are seeing and is hoping that once Charlie Claire's sleep gets better regulated and her lamictal level gets a bit higher that things will calm down. The seizure activity is less than it was before but still more than we were hoping for. So tomorrow morning we will be upping C's lamictal dose and then we will be meeting with Dr. Tye (surgeon) and Dr. M for the post op appointment next Thursday.
Please keep Charlie Claire in your prayers...our goal is still to have our sweet baby girl be seizure free.
Hebrews 11:1
Now faith is being sure of what we hope for and certain of what we do not see.
Thinking about you guys...I will PRAY extra hard for her seizures to go away. Your family amazes me through all that you've been through! xoxo.
ReplyDeleteKristin, I have been having trouble posting comments from my phone. Please know that this is the 3rd time I've typed up a comment but the others wouldn't post. I have been praying for your precious little girl over the past weeks and want you to know my heart breaks for you. I am so sorry that you are still seeing seizures. I'm praying that they will disappear. Do not give up hope! Get a second opinion if you must. Gabby had 2 single stage and one 3 stage surgery before her seizures were controlled. I'm not sharing this because I in any way wish the same for your daughter, but just so you know there is still hope. I know this is an exhausting journey. I know it is so hard to see seizures with a scar that's still healing on your daughter's head. Hang in there, and please contact me if I can help.
ReplyDeletethinking of you, praying, fingers, toes and legs are crossed. Hugs to all your precious little ones, you and Jason!
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