ivi grace update 9

It’s been awhile since my last Ivi Grace update, mainly because we have been in a holding pattern with her therapy. However, very slow, incremental progress over the last few months has allowed her surgeon to conclude that it is time for her surgery. She is quite a ways from her torticollis (head tilt) being corrected, and we will still be working on this through therapy for some time it seems, long after her surgery.

  Video chatting with Pop and Nana in Louisiana.

Video chatting with Pop and Nana in Louisiana.

We are going to Levine Children’s Hospital in Charlotte this November for her operation. LCH is part of the Carolinas Medical Center and is known to be an excellent facility. Her surgeon is David Matthews and we are confident from what we have heard and seen of his qualifications, knowledge and concern for his patients. We do not have a set date yet, but it will be in early to mid November, unless something changes. 

Dr. Matthews has determined that he will be reshaping two places on her skull; her orbital lobe (forehead) and part of the back left side of her head. This is done by making an incision, basically from ear to ear and exposing the skull. Then, pieces of it are cut out, reshapened and replaced. To be blunt, the surgery is basically a big carpentry session. A neurosurgeon is present the entire operation and will be available to assist or guide Doctor Matthews if needed, as far as the her brain is concerned. She’ll be in ICU for a night or so, then in a room for a few days. Ivi Grace will probably be in the hospital for a week total, then have to hang around Charlotte for a few days just to be on the safe side. After that, she’ll have to wear a DOC Band like she did a few months ago for several months. Of course, all this is what we think will happen from the information we’ve been given. Only the Lord knows for sure.

That’s all the technical information. Now for the emotional stuff. To be honest, we knew this was coming and are somewhat relieved that we are moving to the next phase of this journey. However, we would not have mind putting off the surgery just a while longer. There is no part of us that desires for our little girl to be cut, much less her head to be operated on. Also, her first birthday will be November 19, so we are not quite sure how that celebration will even take place. She could very well be in the hospital at that time. In any case, it has been an emotional roller coaster for months and will continue to be so in the days ahead.

Lastly and most important, we believe that God loves our little Sweet Pea more than we ever could. All we know to do is place her in His hands. As always, your prayers are appreciated more than you can know. For the cards, emails, phone calls and for loving us and Ivi Grace, we say thank you.

God bless.