Jeremy’s Surgery

A little over a week ago, a perfect stranger e-mailed me to ask me to please get a second opinion about Peter’s surgery. Well, you don’t just shrug off something like that. You think, “Okay, as much as I like Doctor So and So or the the CF Team at Such and Such Hospital, maybe, just maybe, God is shouting in my ear.”

So, with her encouragement, we’ve set up an appointment with Dr. Ben Carson at Johns Hopkins (I mean, really, how do you top one teaching hospital? Go to another.) We have an appointment with him on May 9th, the only problem is he doesn’t take our insurance so at this point we’re paying for the appointment out of pocket ($276.00) and hope our insurance covers part of the bill. Either way we’ll get his expert opinion and go from there.

In case you are interested, the woman who e-mailed me has a 16-month-old son with metopic suture closure. His operation is going on as I write this and I hope Jeremy will be out soon with a round head– albeit with lots of swelling– and that his developmental delays will be alleviated or even eliminated. He had a great deal of intra-cranial pressure so reconfiguring his vault (what surgeons call the skull) will give his brain the space it needs and relieve this.

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The Last 24 Hours

Have driven me nuts. Yesterday, I went with the boys to pick up a few plants for the flower bed (they’re always digging so I thought “why not”) and we came home and planted them. We had just finished when Nathan found my wallet with the attached house key. He then went in the house and locked the door. I tried to get him to open the door or unlock the door– anything– but nothing doing.

I checked the van (I had the car key and the phone with me) for a spare house key. Gone. Probably got used by me or Gabrielle and never put back. So after about 10 minutes of trying to get Nathan to unlock the door, I called my mom to see if she had the spare key with her. No, it was at the house but my dad’s retired so she called to see if he could bring it over.

Here we were twenty minutes later, dad was about 10 minutes away. Nathan was finally realizing not only that he was by himself but also that I couldn’t get in. He was starting to cry when he finally got the hand strength to open the door. Hurray!

But the day is not done.

Later, my mom comes over after work to pick up my niece’s schoolwork. Apparently, she was out sick today and she and Gabrielle are in the same class at school. My mom was going to run the schoolwork over to my sister’s house. Well, Gabrielle runs out to the van to get her bookbag but comes in with the stuff from her bag instead of bringing in the bag (only my daughter could make her life more difficult like that but anyway,) she brings me everything and I set it on the back of the couch where Mom and I were standing and talking. We look through it all and decide that their teacher forgot to send the work home, etc. Mom leaves.

Fast forward about two hours. Gabs needs to go to Tae Kwon Do and we’re getting stuff together. Where is the car key? I don’t remember Gabrielle giving it to me. She can’t remember what she did with it. She locked the van and she’s pretty sure she used the key to do so but she can’t remember.

Oh, and during bathtime last night the boys flooded the bathroom (and subsequently, the kitchen) used up a whole bottle of my shampoo and a half a bottle of their father’s bathwash. This while Gabrielle was supposed to be sitting with them while I hunted outside for the key. She got distracted by the television which was supposed to be off. I know better but I still thought, “She can watch them for five minutes while I look for the key.” Oh, how wrong I was.

I called AAA this morning (we missed TKD last night and I didn’t want to be putting the kids to bed when the locksmith came so I waited until first thing today) and a gentleman came and unlocked the van for me. I looked where Gabrielle’s bookbag was and no key. No key on the floorboard or in the bag. Great. The car alarm is going off and won’t stop unless I have the key and I can’t find it.

The nice man disconnects the battery for me so the alarm cuts off.

I call the dealership thinking that with the VIN number they can cut a new key and we can take my husband’s car and pick it up.

They ask, “Is your key base black or gray?”

“Gray,” I reply.

“Oh” says the man, “I was afraid of that.”

Oh, what now??

Apparently, the gray base means that the key has to be programmed to open the lock.

What?!

Which means the car will have to be towed to the dealership.

(I’m thinking that my Triple-A membership has paid for itself now.)

Instead of towing the van, we give it one last college try and hope over the weekend we can find the key. (BTW, the boys lost the other key to the van in January). If we can’t find it, we’ll have the van towed to the dealer on Monday and go through the expense of having new keys made and programmed for the car.

About thirty minutes ago, Gabrielle found the key. Under the couch, where I had looked. I must not have moved the couch all the way or it was kicked under there from somewhere else in the room but–yippee!– we have ignition.

Or at least we will when I reconnect the battery.

And Monday, I’m dropping off the key and getting another made. Maybe two. Just in case.

Chevy and Autism Speaks Team Up

I received an e-mail letting me know about an easy way you can support autism research and services. Chevy has teamed up with Autism Speaks to raise awareness of autism during the month of April which is Autism Awareness Month.

For every person who takes a virtual tour of the new Chevy Malibu, Chevy will make a donation to Autism Speaks up to a million dollars.

This a very easy way to support the work of researching autism. According to the GM/Chevrolet press release:

During April – Autism Awareness Month – people who go to the Autism Speaks website (www.autismspeaks.org), can click on the “Help Chevy Help Autism” icon and take a free virtual test drive of the 2008 North American Car of the Year – the all-new Chevy Malibu. Chevrolet has committed to a minimum contribution of $500,000, but every virtual test drive taken gets Chevrolet closer to its goal of donating up to $1 million to Autism Speaks to support its mission of increasing awareness of autism and raising money to fund autism research. Those who participate in the virtual test drive will be offered a free 30-day online trial of XM Satellite Radio.

I took the tour and it took less than two minutes. Two minutes could change the world for a child in the future. Please take the time to take the tour.

And thanks.

Oh, What a Day!

Well, day one of Spring Break has ended not so much with a bang as with a whimper (mine!)

My husband’s parents stopped by on their way back home after visiting my sister-in-law and her family in Georgia. We thought they were staying the night so I was frantically trying to re-clean things that I had already cleaned earlier in the week. (Three kids + two with autism + Spring Break = Great Big Mess)

While sorting papers (ironically, mostly the boys’ paperwork), Peter and Nathan decided to play in the upstairs bathroom (what is it with autistic kids and water??). Their idea of playing in the water is to clog (a clean) toilet with wipes, pour in a brand new bottle of shampoo and flush– repeatedly.

I realized that a) the downstairs was too quiet and b) I was hearing what I thought was just the washing machine in stereo. While running into the kitchen, I yelled for Gabrielle to run up the stairs to stop them– I was just in time for water to begin pouring down over the sink in the kitchen. I’ve honestly lost count of the number of times these two boys have flooded the bathroom.

And before you ask, yes there was a lock on the bathroom door but the oldest child in the house (that would be the 15-year-old male in the 40-year-old body) broke it by horsing around and I haven’t had a chance to figure out how to fix it. I’ve been trying to remember to put a gate up but that doesn’t help someone in desperate need of the facilities.

Anyway, I just keep telling myself that we bought the townhouse in the first place as a fixer upper. We keep fixing it up so it’s fulfilled our expectations several times over.

No Surgery– For Now

In what was, to us, a surprising turnaround (sounds like an intro to the sport’s news on your local network), doctors at MCV have decided that Peter does not need the surgery, at least not now.

The following is from an e-mail I sent today to friends and family:

The doctors at MCV have agreed that the cure is probably worse than the condition at this time. The surgery is extensive and in an older child the recovery is harder and painful. Peter shows no severe bossing (which is when the skull deforms and sticks out trying to accommodate the growing brain) that’s easily seen (his hair covers it—so no more crew-cuts for Peter) so the doctors and cranial-facial team would rather monitor him over the next few years to keep track of his skull growth.

Next year at this time, Peter will go back to MCV and see the neurosurgeon, Dr. Tye, and the cranial-facial team. In many respects, this is a relief but, like the sword of Damocles, it still hangs over us. We have to watch out for symptoms of intra-cranial pressure just as before. But since his brain has, at this age, completed about 70-80 percent of its growth, the doctors are hopeful that we won’t have to put Peter through any reconstruction of his skull and/or upper face. The doctor’s are also confident that if it causes any problem at all, it will be in the form of intra-cranial pressure and not a worsening of his autism.

I’ll get an official report from the team nurse by phone on Friday and then a paper version of the report in the mail shortly after that. Continue to pray for us, as I said, this is not over and can require surgery in the future– or not. But the team of doctor’s we met with was very knowledgeable and we feel comfortable with the decision for now.

. . .Thank you to everyone who was praying for us throughout this long wait. We continue to ask for your prayers.

Thank you to all of you who had us in your thoughts. We’re not completely out of the woods but, for now, Peter is not in need of surgery.

D-Day (C-F Clinic)

Well, tomorrow is it. My husband and I are both nervous about what to expect at the cranial-facial clinic. We think Peter will be okay as far as the stresses-of-the-day are concerned. But you never know with autism– so we’re praying that he’s cooperative.

I did talk to the coordinator of the clinic. This is how it works: we get to MCV (the Medical College of Virginia) in Richmond around 7:30 a.m., register, and then proceed to the neurology suites. There we’ll camp out in the waiting room and wait to be called back to see a variety of specialists. Peter will see a psychologist, speech therapist, dentist, eye doctor, Ear, Nose and Throat doctor (ENT), etc. Then he will see the cranial-facial surgeon, plastic surgeon and neurosurgeon at the same time for thorough exam that they will do jointly. We’ll break for lunch and when we come back the team of specialists will meet with the families individually to discuss their findings.

It’s at this point they decide if your child needs the surgery (we’ve already been told that looks like Peter is “headed for surgery”) and what the team’s recommendations are for the surgery (how extensive).

Since Peter’s metopic suture (the one down the middle of the forehead) closed early causing his trigonencephaly, fixing that is up for grabs. They may decide to fix it too in order to correct some of the triangular forehead look Peter has. His eyes are also a little widely spaced because of it.

If they decide to fix this and the sagittal suture (the one running down the middle of his skull) then the surgery will be extremely intense and recovery longer. The neurosurgeon seems to think that fixing the metopic is cosmetic but another doctor may feel that it will help Peter in another area– so we’ll see. But I doubt they’ll want to go that far.

On the plus side, Tuesday is the meeting for Peter’s IEP and the plan is still to mainstream him into kindergarten. To increase his social skills, his teacher is recommending school five days a week until the end of the school year. The only problem with this is that it will interfere with his private therapy so we have to rearrange that. All-in-all it will be a busy week.

Monday is D-Day

Okay, maybe more like C-F for Cranial-Facial day but we’ve put a great deal on hold until after the 17th so it is a bit like D-Day in that it marks a major date requiring significant, flexible planning (granted, the entire free world doesn’t depend on it so that’s a load off my mind).

And it complicates things since we don’t know what our schedule will be like in the coming months.

When I spoke with the nurse in the neurosurgeon’s office before Christmas, she said that she would likely call right before the clinic with a list of suggested surgical dates. I haven’t heard from her and rather than be a pest we’re waiting until Monday to see what the team says. I am hopeful that Peter won’t have to have the surgery but we’ll see. The day after the cranial-facial clinic I meet with Peter’s teachers, et al. for his IEP meeting. So far, the rough draft suggests that in order to prepare him for mainstreaming in kindergarten they need him to go to school five days a week. Of course, this would start immediately following the IEP, if agreed to, and I would need to reschedule his Monday, 9 a.m. OT and Speech that he takes through Children’s Hospital.

But altogether, Peter’s speech is picking up again and his therapist at Children’s is very happy with his progress.

I’ll spend more time updating tomorrow or Friday.