Good Appointment

The appointment on Wednesday, September 2, went well with the craniofacial surgeon. She said, "Momma, I think that you can quit worrying for now." Of course, that is way easier said than done. I have no idea if this is the last time we have to go through this or not. I will try to relax, though.
This past Wednesday (September 25), Si saw one of his neurosurgeons along with a large entourage of people who are from Arnold Palmer Hospital or are doing fellowships. They were a very friendly bunch and found it hilarious when I had to pull Simon out from under the chair by his feet. Dr. P did manage to extract the kiddo and tickle him into submission. Dr. P likes the shape of his noggin and wants us to return after the holidays to make sure the plates and screws are doing their thing.
Next Friday, Si has his hearing aid evaluation, and they might do the molds the same day. My insurance company does not cover the aids, but I can get a discount through a certain company. I am checking into the Lions Club. Our income is too high for their need-based program, but I am awaiting news on whether we can get refurbished aids. On October 30, he has an assessment through the Child Find program. They will look at everything, including whether or not he needs physical and occupational therapy. I know that he is good on everything but speech.
Dr. P said that lots of kids come to the cranio clinics with hearing aids. One of the fellows told me that it is common, especially with syndromic cranio. There is quite a bit of pressure put on nerves due to skull shape, which can cause some of the damage. The hearing loss will not improve, but it may be stable. I left feeling disappointed. I am still adjusting to this whole idea of hearing aids and batteries and IEPs and FM systems and lack of insurance coverage. Actually, I am feeling pretty sick about it.
I am considering again the genetic testing. The neuro thinks that it is good as the geneticist can help us to put it all together. Answers would be so nice, but I am scared of the possible blacklisting by health insurance companies. I wish that things were more cut and dry.

Appointment this Wednesday

Simon has been doing very well. Now that the swelling has gone down, ridges have appeared. I took pictures of the one on top of his head as it is the most noticeable, and I e-mailed them to the craniofacial surgeon. She thinks that it is likely the way the bone is shaped as they did take the existing bone above his forehead, cut it out, rotate it, and put it back on. She hopes that his head will smooth out as his skull grows. I hope so, too. I know that we should expect lumps and bumps after these surgeries, but this surgery was supposed to give his brain more room and smooth out his head with the bone grafts and bone paste. His forehead looks great, free of the dents and pulsing soft spot. We will see the craniofacial surgeon tomorrow for an appointment, and hopefully one of his neurosurgeons will be there too.
Next month, Simon will have an assessment through Child Find to evaluate everything. I have the appointment primarily for his speech, and I still have to make an appointment with the audiologist to discuss hearing aids. With school back in session, these things are getting harder to do.

Only...Already...2 Weeks?

We look at Simon and forget that his surgery was only 2 weeks ago as of today. At the same time, we cannot believe we are already 2 weeks into being on the other side...again. He is doing great. His stamina has increased quite a bit, but he still runs a low fever in the evenings if he does too much during the day. He wants to go to the park and play on the slides or go out back and play in his sandbox. It is tough to keep telling him that he can't. We hope that the surgeons give him the clearance to return to life as usual when we go on Monday. In the meantime, he is back to himself when playing in the house, as you can see by the pics. My happy little boy is still here!

1 Week Later...

One week ago at this time, we were enjoying a lovely meal cooked by volunteers at the Ronald McDonald House. It was the beginning of one of the more difficult weeks of our lives thus far, and we are amazed today at how far Simon has already come. He is getting back to his playful self, but he still takes it easy. I think that too much action makes him a little woozy. Truthfully, we are very thankful that he has not returned to his old self yet. He has at least a week to go with the stitches in his head. On August 3, we have the follow-up appointment in Orlando at the neurosurgeon's office and should find out if he is clear to return to life as usual. In the meantime, Simon does not seem to have a full awareness of what has happened. He is proud of his new haircut and keeps stroking the top of his head. We got him a fish as a get-well present. It is a red betta in a 3-gallon tank, now named Mr. Red Fish. I am not sure if Simon has grasped the significance of the gift, but we enjoy watching him enjoy the fish. In about a month, we plan to have a party in celebration of him making it through this ordeal like a champ. For now, I am enjoying the time at home with him and not really wanting to go out much. A week ago, I was looking at my baby and wondering if our time with him could possibly be too short. Now, I am looking at him and thankful that we are still all together. All of these moments are to be treasured.

Back to Life

It is good to be home. We are slowly returning to normalcy or whatever normal is when your kid has train tracks across his head. The alternating Tylenol and Motrin seems to be keeping him quieter and calmer, which is a very good thing. He is also getting used to me smearing the incision with the iodine and ointment 3 times a day. The swelling has gone down since even yesterday, and he is enjoying his toys and movies. We have not caught up on the missed sleep yet, but we are working on it.

We are home!

Simon was discharged from the PICU this morning. His eyes are wide open, and the swelling is going way down. He is so happy to be home with his trains and videos. Now we have to survive 2 weeks with an active 4-year-old who has stitches in his scalp from ear to ear.

Open Eyes

His eyes opened this afternoon! I cannot express how much joy I felt when I saw that. There is a light at the end of this tunnel. Tonight, he drank about 2/3 of an instant breakfast shake. Hopefully his appetite will take off tomorrow.