Thursday, June 12, 2008

Some bad news...

Tuesday we went in for Adyson's one month check up and found out that she has craniosynostosis. The pediatrician noticed her head shape even as I was asking him about it. He sent us to the hospital for x-rays right away, and so with 5 kids in tow we got them done and confirmed her condition.

Craniosynostosis as best said from Wikipedia is " a medical condition in which some or all of the sutures in the skull of an infant or child close too early, causing problems with normal brain and skull growth. It can result in craniostenosis, which is the skull deformity caused by the premature closure of the cranial sutures."

It looks like Adyson is going to need surgery to cut the bone and do a complete total reconstruction to open the sutures and to fix the shape of the head.

It is best explained from

The surgical treatment of craniosynostosis has been transformed by the development and applications of craniofacial techniques to reshape the skull and upper face in the infant. Functionally, the goal in treatment is to release the fused sutures to prevent any problems associated with increased intracranial pressure as well as creating the potential for normal growth. Cosmetically, the goal is to obtain normal shape of the skull and face, thus minimizing psychosocial problems.

Here are some pictures of examples of a baby with this problem.
Left is preoperative - Right Postoperative

Here is a picture of Adyson's head.

Today we were supposed to meet with Dr. Strait, the neurosurgeon, as was set up by the pediatrician. We got there and the receptionist tells me that our appointment is not today but July 10th (a month away!). I was very upset. I told her the Pediatrician's nurse set up the appointment, it was supposed to be done this week and not to be put off. It is important to see how critical her specific condition is to make sure she is not having a lot of pressure. I kept telling her I needed to see someone and I was not going to wait. The doctor was not there and was actually away on vacation. And of course, as I am already very emotional, I start bawling right there in the waiting room. She says she will see what she can do, and after a minute says to come on back and we will figure things out.

It was funny though because this older man about my parents age, wispered to me to keep at them and not give up that I can do it and says okay? Then he tells me to say okay. So I wimper ok.

Well, it actually worked out better. We had a lady from the craniofacial center come over to speak with us and the chief nurse of Dr. Strait. They decided to go ahead and schedual a 3D Cat scan, because that will need to be done anyway, even before the doctors could really tell us much. So Monday she is having a 3d cat scan, we have an appointment at 115pm with the plastic surgeon Dr. Sargeon, and Tuesday we have an appointment with the neorosurgeon Dr. Strait. Today we spoke with an anathesiologist regarding the cat scan on Monday because she will have to be have anathesia for the scans. She is not aloud to eat for 4 hours before the scans and I am not looking forward to that experience.

We will keep you updated. Keep her in all of your prayers. We can only have faith that this is all in Heavenly Father's hands and to stay strong. I am trying - but all I can think - my baby, my poor baby...


KickButtMommy said...

Lisa, I am sorry to hear the news about Adyson. She and your family will definitely be in my prayers. I know she will be well taken care of because she has a family that adores her and is taking immediate action, because medical advances are amazing and this can be fixed, and because she is a precious daughter of God whom he wants to take care of! Hang in there, mom!

Melanie said...

I have been thinking about you and little Adyson for the last couple of days, waiting for the update. Good for you for getting the attention she needed at the doctor's office!
I love you and your sweet family so much. We will keep praying for Miss Adyson. I know that Heavenly Father will give her the strength she needs, and the rest of the family too.
Lots of love and prayers comin' from California!

KickButtMommy said...

Lisa, I am sorry to post again, especially since I don't know you personally, but I just had an experience I wanted to share with you.

I just got back from getting my son's haircut. I was sitting next to a woman and was watching her grandson get upset about getting his hair cut. Not a major fit, just a little anxious. We started talking and she mentioned that they drive 2.5 hours to come here because this is the only lady who he will let cut his hair. She said he had surgery as a baby and was upset to get his haircut. I asked what for and she told me he was born without a soft spot in his head. I couldn't believe it! After just reading your story. Here he was a beautiful, handsome, and perfectly healthy 5 year old boy whose only side effects is being a little traumatized about haircuts and hair washing! I told her about you and she said it is very scary to go through but that it is amazing how they come through and fix it. She was so kind and she said she would pray for you and Adyson.

I am so touched by God's mysterious ways, and I hope that knowing about her darling gradnson brings you a little hope and comfort.

Lisa Jo said...

Thank you for all your prayers and concerns. It means a lot to us that you all care so much for Adyson and are thinking of us. I know that Heavenly Father is watching out for Adyson and us and that she will be fine. Of course, the anxiety and fear are still there. It will be nice when I can look back and know that everything worked out and that I have grown from this experience and then be able to share with others.