August 25th, 2004

Dillons hematologist appointment went pretty good last Thursday. His hemoglobin didnt drop at all, it stayed at exactly 10.1! The Dr said that Dillon does not have to come back for a month! Yipee, one less Dr for him to get poked by.
We also had the appointment with Dr Jackson (craniofacial surgeon) this past Monday. Here is an update Doug placed on one of the message boards we belong to-

“Unfortunately Dillon may need more than one surgery. Right now he will only reconstruct the upper orbits of his eyes and his forehead. The primary concern right now is getting the sutures reopened to allow room for brain growth. He won’t do anything below the top half of his eyes until after his baby teeth are in to avoid cutting the nerves or roots that might affect them. He also said that occasionally the sutures can fuse again. But, there is also a possibility that once the sutures are reopened his eye sockets and nose area may grow back in to their normal shape since the bones are still so soft and pliable. He explained that those dark spots on his forehead on the CT scan is where his brain is pressing in to his skull due to compression. That should correct itself post-op as well.
On the upside he does does 3-4 of these surgeries a week and is a very well known Doctor. He had medical students there that had come from Germany and Japan to be taught by him. Because of schedule conflicts between the neurosurgeon and the reconstruction surgeon we are looking at mid November rather than late October (unless something critical is found at the neurologist appointment). The wait is pretty damned hard.
His staff is great. We were assigned a social worker for emotional needs and she will be with us at the hospital during the surgery. Dr. Jackson said that the social worker and the surgical nurse were now at our beck and call’. We feel very comfortable with him.

By the way, he has learned to smile! Not gas smiles, but REAL smiles! When you talk to him he will give you a big wide mouthed grin and coo at you. It is the most beautiful thing I have ever seen.

August 16th, 2004

On Saturday we went to see the pediatrician to discuss weather or not Dillon should have an MRI. He had received the CT brain results but the CT focused more on the skull so the brain scan was not very detailed. The report basically said that the little they could see appeared OK, but an MRI would provide more details.
The concern is because Dillon has days when he is very lethargic and quiet. He also has occasional “unresponsive episodes”. He will stare off in to space and not respond to noise or touch. It only lasts 30 seconds to a minute and then he snaps out of it and acts normal. His pediatrician decided to refer Dillon to a neurologist to see if they would want some other tests. Doug and I think (hope) the days he is lethargic are simply because he is pooped out. He is colicky so there are days he is up sometimes for 10-12 hours at a time, so naturally he is going to have tired days. We are not sure about the periods that he seems to zone out. I did some research and based on description only it could be silent seizures. If that is what it is, it is somewhat common and children usually out grow it. We will find out more at his neurologist appointment on the 30th.
He had his neurosurgeon appointment today and we were able to see the CT films. The report said that the right coronal and metopic were fused, and the left coronal appeared to be open. Well, when the neurosurgeon reviewed the films himself, he said it is bi-coronal (left and right) and metopic. He did say though that the left coronal was not as bad as the right. He referred to Dillons craniosynostosis as a “unique case”. He will be working with a craniofacial reconstruction surgeon that we go see on the 23rd. Dr. Zakalic (neurosurgeon) said it is OK to wait until he is about 4 months old to do the surgery. He said it is safer for Dillon if they wait and the soft spot in the back is open so there should be no pressure on the brain or other related problems in the mean time.
I’m starting to have a hard time keeping up with all the different appointments and Dr’s! I find myself calling one Dr by the others name, and showing up at the wrong times for appointments. I pray that his anemia starts to get better and the neurologist doesn’t find anything wrong, that would be two less Dr’s Dillon has to get poked and prodded by. Not that they aren’t good Dr’s (actually I haven’t met the neurologist yet), but Dillon needs a break!
That’s it for now, I’ll update after his hematologist appointment on Thursday.

August 12th, 2004

First of all, he will be 7 weeks tomorrow! I can’t believe it!
He had his CT scan last Friday. His pedi had ordered one to look at his brain because he was over sleepy and lethargic for a few days. He wanted to make sure there was no pressure or bleeding from the Craniosynostosis (a rare occurance). His neurosurgeon had also ordered one of his skull/brain because he will need it to review for the surgery. Since they were ordered around the same time we combined them so he would not have to have anesthesia twice.
Yesterday the pedi received the skull results but not the brain results. The pedi did tell us that as we suspected, it was 2 sutures that fused prematurely and not just one (the right coronal and the metopic).
We will have more details when we see the neurosurgeon Monday and we should also know when he will be having his surgery. His surgery may end up being sooner than anticipated because of 2 sutures being closed. The pedi is still waiting for the hospital to fax the brain results, but I’m sure those will be fine as he his back to his colicky self 🙂
As for the anemia, his hemoglobin has dropped slightly at each check since his blood transfusion (from 13.9 to 11.7 to 11.1). He had another appointment with the hematologist this morning at 11:30. Unfortunately, it has dropped even more to 10.1. He will continue to be checked each week and if drops to 8 or less they will do another transfusion.

August 4th, 2004

Hello! Just a quick update..
Dillon had an appointment with his hematologist last Thursday and his hemoglobin had dropped, but not dramaticly. At todays appointment it dropped again slightly. The hematologist wants continue to see him weekly to monitor it.
Tomorrow morning he will have the 3D CT scan on his head/brain. Once the neurosurgeon gets the results we should be able to determine when he will have the surgery.