Being thankful

Every Sunday, Kayla's mom Michelle (http://mdbeau.blogspot.com/) posts her Grains for Gratitude. Such an inspirational list of thanks lifts my mood every week, even when the thanks are such small items, like going out to see a movie with a friend. I am thankful for all things in my life, so I am going to rip off Miss Michelle and (hopefully) post often as well. Remembering why we are thankful will certainly push aside those times we are down.

1. I am thankful to Michelle, Kayla's mom for inspiring me every time I read her blog... as I am also thankful to the other mom bloggers out there - Nancy, Lisa, Teresa, Aspen, Amy, Noel, Heather, Julie, Penny, Laura, Katie, Tara, Camille, Michelle, Nicole, Kim, Anna... and the many more I read - who advise me, cheer me up, bring me back to Earth, and find me solace.

2. I am thankful for the peace of mind I have since completing our trips to Kentucky and Children's Hospital WS clinic. I am more at ease with Brady, like we are on track and have strong, defined goals in front of us. I know he is more delayed than other WS kids his age, but he is also more capable than I give him credit for.

3. I am thankful for Mom and Dad giving me a new book for Christmas that I am hooked on - Keeping Faith by Jodi Picoult. Yes, it is one of her amazing stories, and it is about faith. I will certainly send off a full report when I am done. I am just thankful to be in the middle of a good book right now, because I find having any little time to read and chill out is a gift to myself that I don't always remember to do.

4. I am thankful that Tom was fixing the grout and caulking in the bathroom this weekend so I couldn't take a shower until later in the day today -- which means the kids and I did not go ANYWHERE today and played and relaxed. The fact that it was lightly snowing was a topper. I suppose it also means that I am thankful that Tom can fix things like that, he is such a handy guy! :)

SO.... long story short, we have had to cancel the MRI that was scheduled for today and postpone the eye surgery for Feb. 5 because the ophthalmologist did not check "Needs Cardiac Anesthesiologist" on the form. This meant that cardiology needed to review the case, which they did and said Brady needed an echo before he goes under since it his last one was in September. It was a mistake, and the ophthalmologist did call me herself to apologize. She was surprised that the computer didn't catch it though, because she said with his cardiac issue it should pop up that he needs the extra care.

Anywho, EVERYTHING got changed... so I spent the better part of today making the new echo appointment (Feb 28) cancelling the old one, making the new eye surgery appointment (March 4) then the eye doctor follow up appointment (cancelling both the old ones), then the new MRI appointment (April 4) then the new neuro follow up appointment (by the way, these are five different offices I had to call and coordinate!), THEN call and make the new weight check appointment with the pediatrician and call for the bloodwork order to be sent over to the lab so we can get his calcium checked! Was that it?..... ummm... wait, there's more! I also planned out his Music Therapy visits, sent those off to the other mom doing it with me and the teacher, THEN try to coordinate new appointments for OT because she has to switch her Thursdays to Saturdays for a few months, AND try to figure out which days I am going to work so I can ask Grandma and Pa to babysit!

Ok... now I'm done!

We're goin' to the Superbowl!!!

Michael was MORE than happy to call Lisa's husband Chris tonight and tell him the PATRIOTS were going to the SUPERBOWL! Yahoo!!!!

Day Three

On our final day of the Children's Hospital WS clinic, we left home at 6:30 a.m. to get to the hospital for our 8 a.m. Physical Therapy appointment. For almost two hours, Brady played with toys, moved around, did pretty much all that was required of him while the PT gave me suggestions and noted his abilities and difficulties. She felt he did not need any DAFOs or AFOs or anything else ending in AFO for his feet/ankles yet. She thinks we should wait until he is cruising along the furniture to see how he does and if his feet turn in at all. I am inclined to agree, mostly because it is one less thing to worry about when he really isn't going to be walking next week, I'm sure.

The PT noted that his services he is receiving now through Early Intervention are excellent. She said after his eye surgery we may need to do some neck therapy, because he tilts his head to focus on things right now. Hopefully he won't be doing this after his eye surgery, but he may need some help there since he has been doing that for so long. She also agreed with the whole midline positioning that OT stated the day before, and to help him transition in and out of positions. He was pretty interested in her toys, so I am on a shopping hunt.

After PT we went to Neuropsychology Testing, which was pretty much all the same tests as Mervis... once again Brady mastered these feats although he was exhausted by the time we got to her. Remembering another WS mom's plight, as soon as I walked in to the psych office, I said, "Brady has been awake since 6:30 (it was 10:15) and we just did two hours of PT." I wanted to qualify any problems we might have. Well, that was a needless thing to say because he did great, even though he was tired he came alive and grabbed at the items like a pro. This doctor didn't give me too much info as we were sitting there, but there really isn't much to "help" me with anyway. I will be interested to see what her report says.

This ended our clinic. The seven doctors/therapists met on Friday afternoon to discuss Brady and his testing. I should get a comprehensive report from the geneticist within one-to-two weeks, plus a report from each separately. They all gave me their cards and said if I didn't get their reports within the next two weeks to call. This is perfect because Brady has his Early Intervention annual meeting February 23 and we will be able to include their findings within our report as well.

The experience was fabulous; the therapists and doctors were all extremely helpful and knowledgeable. I felt I could stay for hours asking every nook and cranny question if need be. Plus I got ANSWERS which was cool. I would go so far as to say I had a more fulfilling time at this clinic than with Mervis this past trip. To be fair, it could just be because Brady was more receptive, and Mervis' information was really only one part of what we accomplished at Children's -- we also did PT, feeding, etc. at the hospital. The thing is, they are all linked. Brady's PT is really important for him and hinges on his other neuropsych stuff. Thinking back, those two hours of PT probably helped his Neuropsych testing because it awakened his body and let him know "where he was in space" (I think I am going to be saying that a lot now!). I don't think he could have accomplished some of his goals without reawakening his body. It brings us back to his brushing we did when he was younger.

I will still go to Mervis next year, but I don't feel like if I don't go I will be lost without it now, knowing I have phone numbers and names of people who can help me here who are knowledgeable with WS.

This clinic was done at Children's Hospital in Boston. I believe many other hospitals around the country do WS clinics. I would definitely find out if one near you offers it. This information would be priceless for EI and IEPs, plus they seem to lean towards the "more is better" theory of therapy, so that would help with gaining services.

Day Two

Day Two started a little earlier today, beginning with OT. Rayne was the OT and fabulous; she sat with me first and we went over Brady's history and his abilities. She then brought him in and did a series of tests similar to the ones Dr. Mervis did, although this time Brady did everything she asked of him. In Kentucky he seemed more disinterested and didn't pick up the block, for example when I know he can. After that, we went into a sensory room which was complete with gymnastics mats on the floor and a swing in the middle of the room. I took some notes from her, but Rayne, like all the other people Brady is seeing, will be sending me a full report including suggestions for us to work with him.

A few things she noted was how it seemed that Brady thinks his right and left sides are separate; he rarely crosses midline, which is probably why he doesn't clap. She is also recommending that he wear small "mickey" splints during the day to keep his thumb out; he currently alternates hands wearing a harder splint at night and it has really helped. He wears them because at rest he keeps his thumbs in his palm and the splints help stretch the thumb out.

A big thing we talked about was how Brady is a bit "lost" on where he is in space -- he has not fully grown with his vestibular sense (awareness of body balance and movement). It falls right in line with having such low muscle tone. That is why he might shake his head, why he enjoys deep pressure (we have always patted him on the back very hard), why he enjoys being upside down. She put him in the swing and swung him around high, twirly, fast -- he loved it! He got so excited and energized. Then she placed him on one of those big yoga-type balls and stretched him out so his body molded the ball. She pulled him back and forth. He was in heaven! It was so interesting to see how he enjoyed it and how "alive" he was after. So of course I plan on hitting Target to get one. Rayne said doing it everyday, and as much as possible, will really help him grow into his nervous system.

After OT we had a break for a few hours so we went to lunch. Thankfully, Brady took a nap, albeit only an hour but he still got some time in. After that we went to Behavioral Psychology. This psychologist handles all the WS patients and was very interesting. Although Brady doesn't have any behavior issues right now, we talked about what to do with him when they arise. For example, WS kids crave that personal connection. So if one day Brady bites his friend, I won't say "Look at me, Brady. There's no biting!" and then talk to him (like I do with Michael!). You are giving them exactly what they want when you are telling him to look at you and talk. This psychologist spoke of a WS patient of hers who loved being with his family all the time. It was set up that when he was misbehaving he had to go sit in the dining room, away from the family. It worked wonders because he did not get when he wanted -- attention from his family.

Another thing she said that was just in her opinion was in regards to anxiety. She said she has seen in just about all her cases that the hyperacusis and anxiety go hand in hand; it is neuorpsychological. If I remember correctly, I believe she said she hadn't seen a child with anxiety who didn't have some form of the hyperacusis. She stated that for those situations, medication is usually needed because it is not a behavior issue; it is simply the way you were programmed and need the help the medication gives.

After Behavior, we went to Speech and Language Therapy. Christina first spoke to us about feeding, and reiterated the fabulous Growth and Nutrition Clinic the hospital offers. It sounds like something that would be good for Brady, since he still has feeding issues -- will we ever get past pudding and yogurt?? Christina felt that Brady was on the cusp of moving ahead in terms of speech and gave us a lot of instruction on things to do with him. She also recommended more Speech from Early Intervention since right now our ST spends half the time on feeding too.

Speech was the last one of the day, so after waiting to get the car from valet, Grandma, Brady and I headed out and had dinner on the way home since we were in rush hour traffic. Brady and I rolled in at 8 p.m., where he promptly went to bed for the night. One more day to go!

Day One

We had our first day at the Williams Syndrome clinic at Children's Hospital. It was a relatively easy day. First up was Audiology. We had been meaning to test Brady's hearing so I am so glad this was part of the clinic. We arrived early, went in early, and left early... plus Brady has no problem with his hearing. Yeah! Even with his little cold, he has been signed off on hearing exams in the future. The audiologist said we could just take part of the ones offered in clinics like this, but no need for any secondary testing.

Next up was his comprehensive medical exam by his geneticist. We had just seen her in September, so this also went fairly quick since she was pretty up-to-date with his info. I gave her a little summary about our Louisville trip, which she was interested to hear about. She immediately squashed Morris' theory about his brain developing abnormally-- "let's wait until we see the MRI", although we both acknowledged that obviously Brady's brain is somewhat abnormal since he has WS. In my opinion, I think she respected the advice and info we got from Morris and Mervis, but didn't want me to put their words in indelible ink.

Our geneticist said all the doctors from this clinic at Children's will be meeting Friday afternoon after all our consults are over to discuss Brady. She will send to me within a week or two a summary of each specialist and information we can use for IEPs, Early Intervention, etc. This is great because Brady's annual EI meeting is the end of February so it will come in time to put some of their suggestions to use.

So far, so good.... I'll let ya'll know how Day 2 goes!

We're preparing over here for our next round of doctor visits - we go to Children's Hospital for the next three days of clinical testing at their WS clinic. Tomorrow is an easy day: audiology first then a comprehensive medical exam by his geneticist, whom I adore. I was glad we were doing audiology because we were trying to fit in a hearing test at some point because he hasn't had one since he was two months old. I don't suspect we will find any problems, but it's been on the list of things "To Do" since September.

Thursday is a full day: OT for two hours, a two hour break, then behavioral psychology for an hour, and finishing the day with speech and language therapy for two hours. Speech at the end of the day??? Yeah, that'll work. I know something has to go last and hopefully they have a method to their madness. Friday starts off with two hours of PT then an hour-and-a-half of neuropsychology testing (whatever that is). I am interested to see what kind of info we will be getting, especially since we just saw Dr. Mervis and Dr. Morris two weeks ago. On top of all this, Brady has a little cold that will hopefully not impede the outcome.

~

On a sidenote, who needs screenwriters when we have Reality TV?? "American Idol" started tonight and Michael got to stay up late and watch the first group of high-hopers parade in front of the camera showing off their wares. One of the singers who made it through to the next round was a young 20-year old girl who has a two-year-old daughter with Rett Syndrome. Not knowing anything about the syndrome, I Goodsearched (http://www.goodsearch.com/) it and read the description about the condition that almost exclusively happens to girls. It broke my heart. The mother said her daughter was growing normally, walking, "snatching cookies from me" and then suddenly, it was like she "went to sleep one night and woke up a different person." Rett Syndrome is described as "after 6 to 18 months of apparently normal development, girls with the classic form of Rett syndrome develop severe problems with language and communication, learning, coordination, and other brain functions."

Of all the things we have gone through over here, all the disappointments and heartbreak, I still cannot imagine having a child all of a sudden deteriorate before me. This mother was a young woman and I am amazed at her strength to tell her story, very sensitively, positively and strongly. She was not some attention-grabbing celebrity-wanna-be. I'm sure she touched many hearts.

My (local) friend Nancy has always been a Reality Goddess and I think she is rubbing off on me. While watching "American Idol" I taped "The Biggest Loser" - I'm not sure when I got into that show. And of course, "Big Brother" starts in February, normally a summer-only event when you could justify watching it because nothing else was on. Last week I also caught "How To Look Good Naked" on Lifetime -- a very endearing show in which the people change their hair, makeup and bra and instantly lost 10 pounds. One of my secret loves is "My Sweet Sixteen" on MTV where obnoxious rich girls and boys plan $100,000 Sweet 16 parties. I did try to watch "Celebrity Apprentice" last week, but was very sad that Trump fired Nadia Comaneci whom I adored growing up that I am not checking that out again. And this season, Michael and I were very excited to see Jen and Nate kicked off "The Amazing Race" last week and are preparing for its finale this Sunday. It's actually a very good show for Michael to watch - people race around the world and intertwine themselves into the cultures of each country. We are both learning a lot from it

And, no, Nance.... I am not watching "Little People, Big World"....YET. I have to stop somewhere.