Thursday, June 30, 2011

last week of May

That Monday we had a long-ago scheduled appointment for Tanya (from TLea's Image Keepsakes Photography) to come take pictures of the boys at the nearby lake. With all the craziness with Jason I had sort of put this on the back burner. Hence just a mere hour or so before she arrived I was running around trying to find something for them to wear. I never managed to get my own hair done or anything! But somehow Tanya still managed to get some great pictures. She's amazing. I highly recommend her!

That evening we ended up having a surprise rescheduled final baseball game, so we rushed off to that.

A peaceful morning walk. This is the bird we had been seeing regularly.

Storytime at the library. Craft time!

Look at the big boy doing the slide finally at Bob Meyer park!

Back quite a few days prior I had put a call into the neurologist after a particularly difficult night with Jason. He had woken up, complaining that his head and eyes hurt. It's not that uncommon for him, but unusual for it to wake him up and keep him up. Due to the Chiari I decided that I should at least find out if there is anything special I should do to treat the headaches, if anything. I also wanted to know, since it would be a few week until we saw the neurosurgeon, if there were any precautions that needed to be taken. Well, apparently the neurologist did not get this message until he was in on Thursday and he called and left me a message saying essentially that if he's having headaches that are waking him up than he needed to see neurosurgery now. He said that I'd need to call him back but most likely would need to head to the ER. Of course I was busy outside filling up the water table with Jason and didn't hear his call, so the nurse called back maybe 20 minutes later, which I answered (hadn't even realized at that point that the neurologist had ever called me). Despite the fact that Jason was having no "symptoms" at the time, they advised me to head to the ER at CHOP and they'd notify the neurosurgeon that we were on our way. My dad quick came home from work and myself and my parents head to CHOP ER with Jason. It seemed absolutely ridiculous bringing a seemingly fine child there, but we were just following orders. Of course we waited FOREVER, but they ultimately told us that he was not showing any symptoms (duh) and we would have to wait until our neurosurgery appointment for further information. Apparently the biggest concern was whether he was showing signs of water building on the brain and, due to his "condition", no one wanted to make that call without the approval of the neurosurgeon, hence why we got sent there. So he was absolutely fine. We did gain some information though...the condition was "Chiari Malformation, type 1" and he did not have any restrictions at this time. So I guess it was worth the trip.

Lazy Friday night...

a gorgeous spring weekend

That Saturday Bob came over and we took a little road trip with the boys to the Cape May Zoo. We first had a picnic lunch at the playground. A bird stole Jason's sandwich, which he has not recovered from yet. Then we hit the zoo. Highlights were feeding the goats and geese and, for some reason, watching the turtles. Jason had a little scare in the reptile section when he was quite certain that a snake was trying to eat him. Poor baby.

After the zoo we came home quickly to clean up and then head into Camden for a Riversharks game. We had a really nice night watching the game, playing in the kids area, eating ice cream, etc.

After the game we stood in line so the kids could run the bases. The kids had to be old/capable enough to run the bases themselves as parents weren't allowed on the field, so I was hesitant but Jason really wanted to do it. Tyler took his hand and ran with him. So adorable.

Sunday morning we bundled up a bit and head over to Memorial Sports Complex to catch a bit of Aiden's lacrosse tournament. We also spent some time at the playground and grabbed a picnic lunch.

From there we went to try a new place for haircuts. It was only Jason's 2nd professional haircut, and I still don't think we've had much success. In their defense, he does not have much hair to work with.

Later that afternoon Tyler had a scout meeting and beautification project at a nearby bridge/dam. They planted shrubs and such that will eventually protect the bank (or something like that). Tyler also got some awards and such.

Tuesday, June 28, 2011

and things get even more complicated...

On Monday Tyler had no school so Beth and Erich and I met at Discovery Museum with the kids.

Jason decided he wanted to use the potty (he was not successful). Doesn't everyone use an old toilet paper roll as a telescope?

Tuesday my dad took off work, and we dropped Ty off at Beth's house bright and early, before myself and my parents took off for CHOP for Jason's brain MRI. The staff there was great and made the procedure as smooth as possible, but it was a long emotional day. It was so sad to see my baby put under, but everything went smoothly...except the fact that they gave him the "giggle juice", which made him drowsy, but then the procedure got delayed so that had worn off before it was time to put him under. He did well though.

The waiting room was the hardest part. Especially when it took more than an hour more than they said it would take!

When he finally came out of the procedure we got called back to be with him in recovery. They said he'd need to sleep 1-2 hours, and he looked so peaceful there, despite the ear plugs and nasal cannula so he could get adequate oxygen.

Of course he didn't sleep nearly enough.

When he awoke he immediately wanted to eat. However he was still highly medicated i suppose and could barely sit up on his own, let alone open and eat a cookie. Yet he insisted on doing this himself. He needed to have someone spotting him constantly, which he was not happy about at all, yet he was unaware how many times we saved him from tipping over. So sad, yet actually somewhat comical on some level.

We eventually were discharged, being told there were no "red lights" found in the MRI, so I was somewhat relieved that the results were positive. He remained pretty groggy and cranky on the ride home, but of course not sleeping like we were told he would do. Instead he insisted on eating. When I got home that afternoon my dad had to return to work and my mom had a meeting. Luckily Tyler had art club after school and Beth agreed to keep him after his club because Jason started vomiting shortly after we got home. He remained unable to walk properly, yet he thought he could do so. He required very close supervision...yet was unhappy about this. He could be compared to the most obnoxious drunk person. Not a pretty site.

In the midst of his puking and unpleasant status, his neurologist called. I wasn't expecting a personal phone call at all and I had to jot down notes on a nearby scrap paper while Jason whined right next to me. The neurologist started with the good news, that there were no signs of a brain tumor. HOWEVER (never something you want to hear from a neurologist), they did find an "abnormality" in his brain. He explained it as his brain protruding downward into his spinal cord. He said that it may or may not explain some of the issues we had been seeing with Jason's tremors and balance issues. He also said that it likely did not have anything to do with Jason's other developmental delays, but we would know more after following up with neurosurgery. Yes, neurosurgery. He told me that he wanted me to call the next day for a neurosurgery appointment, and that the "buzz word" was "Chiari". I asked if this was the name of the condition he had and he said yes, but told me NOT to google it because I would not be happy with what I read. He explained that this condition might not be significant at all and we might find that he would not require any surgery at all and would only have limitations when it came to sports. He also said that he wanted Jason to have a sleep study, because Chiari is associated with sleep apnea. He then said that the neurosurgeon would have to answer any further questions and told me to follow up after we see the neurosurgeon. Honestly, the rest of the evening was a blur....

Jason absolutely refused to let us turn his light off at bedtime that night (a first for him). And he was so exhausted that I was able to check on him without waking him.

I felt like the rest of the week was spent on the phone with doctors, therapist, insurance, schedulers, etc.

Our first strawberry that we grew! Tyler says it was yummy!

Please Touch Museum

On Sunday May 15th the weather wasn't looking so hot, and our outside boyscout/baseball event had been cancelled, so my parents and I decided to take the boys to the Please Touch Museum. None of us had ever been and it had been on our "to-do" list for a while. It didn't hurt that we had recently discovered that 4 of us could get in for free on our Discovery Museum "friends and family" pass. So we took the drive to Philly and only paid $15 for all 5 of us to get in! What a great place. It was huge and had so much to offer! I think they loved all the sections but particularly enjoyed the water/boat area, grocery store, and art/music center. We spent a nice long day there and are looking forward to going back.

Two quick stories to share...

I was watching adoringly as Jason cared for a baby doll in the doctor/hospital section. He talked sweetly to the baby, fed it a bottle, and then proceeded to whack it in the head with stethoscope. Such a boy.

Later we were in the McDonald's section where Tyler prepared Jason a meal with fake food. We watched, curious as to whether Jason would realize the food was fake. He picked up his hamburger and proceeded to pretend to eat it, followed by shaking his head violently saying "no me yike". Apparently he did not like his fake burger.