Third Cranio Surgery

An update has been a long time coming! Simon is now a happy first grader! He has been growing very quickly, and he is doing well in school. He attends speech therapy twice a week, and he has adapted nicely to wearing hearing aids in both ears. Unfortunately, with all this good news, there's some bad news too. It looks like he will be having a third surgery to once again cover up some defects.
For this surgery, all they need to do is cover up holes, making the procedure much less invasive than the previous two. The talk so far is of taking some skull bone from above his ears and splitting it like an Oreo cookie in order to do a bone graft. The bone pieces will be held in place by plates and screws that his body will eventually absorb. Supposedly, he will not need a blood transfusion, but I have heard that one before. For the last surgery they initially said that, and they ended up using all the direct donation blood due to excessive bleeding from scarred tissue. I think that I will send out the call again for our O+ peeps.
The cost for the surgery this time around will be double the previous time. Yes, you did read that right. My out-of-pocket maximum the last time was $5,000 total. Now, it is $10,000 per insured patient. I am already in a panic about this but keep reminding myself that I am pretty good at ignoring nasty letters as I send in $20 a month on these sorts of bills. It is not like we own anything outright for them to sue us and take. As if this sort of thing were not stressful enough, right!?
Speaking of stress, I honestly feel like I am on the verge of falling apart this time. It seems like it would be so much easier to just let it go and see what happens over time, but then I see the spots on his forehead pulsing. It would not be fair to leave his brain so vulnerable, thus limiting his activities. We have to take care of this for his future. How do we know if we are going about it the right way, though? Remember, this will be the second attempt at a fill. Will the bone graft take, or will we be facing the OR again in 2 more years?! I sure do wish that we could either have a miracle occur in the next 3 months or find a crystal ball to help us make the best decision.
Being a parent is hard enough without these sorts of decisions to make! We want what is best for our child, but how do we know what is best?

Financial Difficulties

I have not posted in a while due to the busy nature of work and life. I do want to take a moment to mention that the travel and medical bills for Simon's tests, surgeries, and now hearing aids are too steep for us to handle right now. If you would like to contribute, please e-mail me at craniomommynbaby@yahoo.com I will give you the information of the offices where we still owe money.
Thank you.

Surgery Costs

Okay, I need to organize the surgery bills. Here is what I have so far, and I have no idea how we are going to pay for this.

Hospital Stay: $750 of the $102,365
Anesthesia: $414.80 of the $2,822
PICU Doctor: $586.87 of the $4,132
Neurosurgeon: $1,122.82 of the $33,269
Craniofacial Surgeon: $3,371.43 of the $31,000

Grand Total: $6,245.92 out of $173,588

We have an out-of-pocket maximum of $5,000, but I have no idea what that means. Maybe we will owe less to some of the bills; I need to call the insurance company soon to get more information.

We also owe $150 for the first hearing test and likely another $150 for the second one.
The hearing aids will be around $2,200 out of our pockets.

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.