Wednesday, August 19, 2009

Vacation, School, and various other updates


Its the first time I've had time to sit down and write since we got home from Panama City Beach, FL. What an awesome time. I won't say that it was restful; three out of the seven nights that we were there Manny woke up in the wee hours and was awake for 2-3 hours straight, but it was definitely a chance to clear the mind. We invited Kevin and Ariane and their two boys Donovan and Ethan to come stay with us for the first two nights, and what a time we had. Ariane and I went para sailing, everybody played on the boogie board, the kids played in the pool and in the ocean and in the sand and any other time we could be found inside of the condo, making cheap food and drinking cheap beer while the kids ran around and ate and played and did whatever they wanted.

During the Carither's visit we had an unfortunate incident. We suffered a home-invasion, or rather... a condo invasion. Someone or something entered the condo and wreaked havoc. Authorities say that this specific type of activity is localized to the PCB area. I was able to catch some of the horrific event on tape. We were able to put the event behind us and enjoy our vacation.

After the Carithers family left on Monday we enjoyed our time as a family. Before Manny started his onslaught of NO-SLEEP, we managed to all take a big 2 hour nap in the middle of the day. I swear it was one of the highlights of the whole trip for Steve and me. Jake really enjoyed the big swimming pools and learned to hold his breath as well as swim forward a bit in his life-jacket. Steve was very indulgent of my obsession with swimming and snorkeling in the salt-water and often watched the boys while I tried to find waves to ride or wildlife to harass. We even went to St. Andrews State park and I did a little snorkeling by the jetties but there was nobody there and I got spooked by the big jellyfish that I saw.

Gosh, there's so much more to write about, but lets just say that we had a good time, and only got stressed due to the lack of sleep. As usual, Steve let me run around like a lunatic and did more than his share of kid-watching while I worked out my crazy energy. Did I mention that he surprised me with this vacation? I am a very lucky woman, and we have two lucky kids to have such a special dad.

During our vacation I rarely thought about my kids and their medical and developmental issues. However, there were a LOT of children there, and it is very very difficult not to be constantly reminded when hanging out with "typical" kids. An 18 month old saying his first words and walking without falling, a 3 year old that can tell you his name and how old he is (or a few dozen facts about sharks) will stir certain feelings in my heart that I can't explain.

That being said, sometimes, amidst my anger and angst and sometimes well-hidden (except to my poor husband, who absorbs most of the shock, bless him) complete FURY that I have been dealt this hand of cards that was NOT in my plan, I forget to point out again that my kids have super-powers. Manny is Mr. Personality, and unlike Jake, who, for years, had trouble adjusting to new situations or people, will cuddle on anyone that he feels he can trust. And he's simply beautiful and makes people happy everywhere he goes with his smiles and his ability to be just stunning to look at. Jake, who has had to overcome problems with being "over friendly" and jumping upon, tackling and otherwise touching strangers inappropriately has managed, with LOTS of work and learning of self-control, to tone it down and simply greets everyone he sees, often saying "Hi friends!!!" To his delight our condo was on the second floor on a corner of the 16 story building, so there were plenty of passersby for him to greet as they headed for the stairwell. I would say that there were a few thousand extra smiles to be seen (even if a few were a bit uncomfortable and confused) at the Summit that weekend. My kids may be deficient in a lot of things, but not in their ability to love.


Jake's first day of school was Monday. He is, as I probably have said before, attending the Pioneer Head Start integrated preschool class. The class has 9 typical kids and 7 special needs kids, and a special ed and a preschool teacher. He goes 5 days per week from 8 until 1, and is fed breakfast and lunch, learns to brush his teeth, and they even work on potty training. I was really surprised at how much the kids do in one day. I think it is wonderful for him and I adore his teachers. I can't wait to go volunteer for a day, and will probably do that next week. I wish I wasn't so completely overrun with orders during back-to-school time because I am dying to see what they do there and to help out when I can! I have had great communication with Micaela, Jake's special education teacher, so far and I am really happy with this program so far. Steve was the one who did enrollment and volunteered to be on the policies committee for the preschool. I was told that he is the FIRST father to volunteer for this. He also volunteered me to teach a music class (oy vey). As you can see, Jake had to be dragged to school kicking and screaming his first day (check out the sign language for "bus" and "school"):



Manny's Assessment
While we were gone I received a voicemail from Jennifer from Babies Can't Wait and returned it on Monday when I got back into the swing of things. I was pleasantly surprised when I found out that she had time to do his assessment that afternoon. I like Jennifer and I think we have a bit in common and I enjoy her company. I had met her before when Jake was 3 and came to do his final assessment with the children's first program, and she referred him to the school system because he was so close to three. The assessment went smoothly because J. is familiar with our situation, with me, and because I am familiar with the questions asked. Manny scored very low on speech (of course, he has no spoken language at this time) and also low on gross motor skills. J will refer me to BCW, there will be a second in-home assessment and he will probably qualify for the arena assessment. After that he will probably have a teacher/therapist come to the house to work with him. None of this was a surprise and it was more of a technicality than anything.

Although I don't really consider the very first BCW assessment to be very complete, it IS just a very basic exam, I was happy to see that his social development didn't show up as delayed.

Anything Else?

Hmmm.. other than that.. Jake is sick with a cold, welcome to school, right? Manny seems to be soon to follow. I am absolutely stretched to my limit between 8 dogs to groom tomorrow, 18 custom backpack orders, a booth to stock for Sunday morning, and all of the other juggling and regular life stuff that goes on in between that. I don't want to get sick.

I had an unexpected treat today and was asked by the Tom family to keep Bridget while they went to a loan meeting for a house. They got the loan and made an offer. Nobody ever asks me to babysit, so I was really pleasantly surprised and honored. Bridget wasn't happy about Mommy leaving, but really just needed a nap, which she got in the car while we went to get Manny. Jake was so happy I thought he'd come out of his skin when I met him at the bus with his long-time friend. Our whole family just loves that whole family. I'm so glad that they are our friends.

Ok.. thats all I can write for tonight.. so much for a cool "in conclusion" paragraph.

Tuesday, August 4, 2009

Second MRI results

First, I guess I forgot to update about the hearing exam. The audiologist at Loopers Speech and Hearing used a machine to test Manny's hearing. It went very smoothly and Manny was really cooperative. According to the instrument his hearing is normal. Thats good news.

Today we went back down to Dr. Reisners office. Dr. Reisner showed me the MRI. He said that besides the first tumor, there are several spots that are insigificant but consistent with NF1. Also, he has another significant tumor high on the base of his spine/neck area. This tumor protrudes from the spine however is located outside of the spinal column. At this time the tumor is not putting pressure on his spinal chord or causing any of his issues. In fact, he says that there is nothing visible on the MRIs that explain Manny's developmental delays.

These tumors are presumed to be benign. The only issue would be when/if these tumors grow and begin to put pressure on the spine or other organs. We will see an oncologist in the next 6 months. Dr. Reisner has ordered another MRI in 9 months time, and this will be reviewed by a multiple discipline team of doctors. We want to see if the tumors grow and how fast. There is no way of knowing if Manny will develope no more tumors, a handful, dozens or thousands. Thats just the mystery of this disease.

More than likely Manny will need an MRI every year to check the growth of these tumors and to check for more. I can't remember right now if there was anything else. I'm kind of tired.

On a happier note, last Wednesday Steve came home and surprised me by saying that we were going on a family vacation to the beach! We are leaving Saturday for an entire week. I am very very much looking forward to spending this time with my family and some friends too. It will be a much needed rest.