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...

Catch up

Well I have gotten waaaaay behind. Here are just some quick pictures and info on what has been going on.

Adyson and her baby ways
Bath time: Her first bath she screamed the whole time. Now she loves them.

Nap time: Mornings are her good sleeping times but when mom wants to go to sleep she likes to eat eat eat.

Nap time: again

And more sleeping... don't you wish we could be babies again sometimes and be aloud to sleepas much as they do!

All dressed up - off to church we go!

And Loryn being Loryn.

Left: Loryn yesterday when we found her around 9pm when she was supposed to be asleep. It is just so exhausting playing with Barbies.

Right: Remember this photo - when Loryn was around 3 years old. Did you notice the cabbage patch shoe on her right foot and the bathing suit around her neck. These are the moments that make it all worth while.