Tuesday, January 29, 2008

At 27 months, Brady is no longer just a roller... he is officially a layer-downer-who-puts-himself-in-sitting-position! Yahoo! He did it once yesterday, but I refused to believe it was the real deal... so today he did it with OT, then the rest of the day! Yahoo!!

In the middle of him doing all this, he keeps trying to pull himself to stand. He has always loved to stand, but he is so intent on getting there now. I think we are in for a crazy time here, as I see so many things falling into place for him now.

Here are some pics of Brady and his cousin Cooper hanging out. Cooper is seven months old and very intent on trying to play with Brady and his toys, as you will see in these pics~~
"Hey, there, how you doin'?"

"Baby RAW... I'm gonna get you!"

"MOM.. can Cooper go home now????"

"So, you're telling me there's a guy's hand up Elmo's butt?? Gross!!!"

Sunday, January 27, 2008

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! :)

Tuesday, January 22, 2008

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!

Sunday, January 20, 2008

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.

Thursday, January 17, 2008

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!

Wednesday, January 16, 2008

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!

Tuesday, January 15, 2008

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.

Friday, January 11, 2008

Ho hum

It's a dreary Friday here in the northeast - rain, rain and rain, plus thunder and lightening. This past week it was in the 50s and beautiful; a hint of spring to come. Oh well.

Our scheduled MRI for today has been postponed to January 22. Brady had a clear drippy nose this week, and while I thought it was nothing serious, I didn't need to drive to the hospital at 6:00 this morning, after displacing Michael somewhere else, to be told by the anesthesiologist they wouldn't put him under. Both the nurse I spoke to yesterday and I felt that was a strong possibility. It was the right decision, since I think he now definitely has a little cold brewing and Michael keeps blowing his own nose, too. We also cancelled Music Therapy for tomorrow for the same reasons, plus the other WS child coming over is going to see Dr. Mervis this week coming up and I certainly want him in top form.

So I am hibernating today and cleaning around the house, doing mounds more paperwork for the Children's Hospital in Boston clinic we are going to this week and more insurance papers... never ending. I dosed out some Tylenol to Brady and he is finally sleeping, hopefully for the next three hours. In fact, the rain is a welcome addition to the day, making it more reasonable that I've taken a shower but I'm wearing comfy pj bottoms and a sweatshirt. The only saving grace to a completely depressing day is going out with Ang tonight.

I keep reading lately from the other bloggy moms what a funk everyone is in right now. I feel it too. I love January because to me it was always a "clean sweep" type of month - clean out, throw away, start fresh. I am feeling a little overwhelmed right now. Not with the committees I am on, or even the new activities we are starting, like Michael's guitar lessons or Brady's music therapy. Just stuff at home. There's so much STUFF it is clouding up my aura! LOL I took a big trash bag to Michael's room today and am starting downstairs too. I used to love Flylady so I might need to venture that again (www.flylady.com).

Monday, January 07, 2008

Kentucky Trip Part 2

Our trip down to see Dr. Mervis and Dr. Morris started off with a bang... a nice, soft, white, winter bang called snow. We started out on Tuesday, January 1 and drove right into rotten road conditions in Connecticut.... don't they plow in that state??? Because there was a threat of a huge snowstorm in New York, we ended up re-routing our trip and went through Pennsylvania and West Virginia to get to Kentucky, instead of our original route down through Ohio. We ended up only driving six or seven hours that first day, then did the final eight on Wednesday. ("We" meaning "Tom" as he did all the driving!)
Michael spent most of the time watching movies (Santa brought a portable DVD player... definitely a lifesaver during this trip since the road conditions weren't great... less stress) and Brady loved playing peek-a-boo, which you can see in the pics! Both kids did great, and I breathed a sigh of relief at that, since Tom and I do like to travel via car around the country. (Although I do believe Tom is all set with driving right now!)
On Thursday we headed in to the University and Brady did his assortment of cognitive testing, playing, etc. After we were done for the day, we went to the Louisville Slugger Museum for their factory tour... it was so cool! We saw all the Boston Red Sox official bats (Ahem... you know, the World Series Champs??) and Michael tried to hit a few 50 mile hour pitches. We also took in "Alvin and the Chipmunks" that night.

The next day Brady did two more tests and then we conferenced with Dr. Mervis and Dr. Morris. (It seemed to me that he did more testing back in June, but that may be because of his age.) When we sat with the doctors, there was also a developmental pediatrician there, as well as a geneticist. Dr. Mervis felt that his strongest advancement has been in his PT work, and that he has not made any new strides in OT and Speech since June. In fact, she felt that he did little more last June in fine motor skills than this time. I do see where he has not advanced very much in these two areas, although I do feel he is further along than last summer. It is questionable at this point whether Brady is having issues with his strength, his eyesight, or his understanding (neuro). Dr. Morris felt he was trying to pick up blocks by moving his whole shoulder, as opposed to just his arm or hand, which may indicate more muscle issue. That is all just plain PT work, nothing new. Dr. Morris also felt he was trying to focus in on the items to pick up, which would be issues with his strabismus,
which he is having surgery for on February 5.

In terms of his "understanding", he is having an MRI this Friday and Dr. Morris is interested in seeing the results of that, upon which she will contact me with another report. Dr. Morris feels we may see irregular brain growth patterns, more so that other WS children. She feels that Brady has "Unruly Hair Scalp" ... no I am not kidding! What this basically means, is that his a la natural Mohawk is due to the fact he has more than one "swirl" in his hair growth (we all have one at the top back part of our head). We get these swirls when our brain is forming and growing in utero. Brady having more than one means his brain did not form in the typical fashion everyone else's did. What does this mean? We won't know til after the MRI. It could show nothing, it could show abnormal brain growth consistent with other WS people, or it could be more than usual abnormal brain growth. It may explain why Brady is more delayed than other WS kids his age.

We also received directions on what to work on with Brady, i.e. using objects appropriately (comb, cup, etc.), rolling a ball, books, etc. (I did point out he obviously doesn't know how to use a comb because we never use one on him, LOL!). We also need to have our OT help us help him hold objects to the best of his ability with his radioulnar synostosis. Usually kids just adapt, so we have to help him figure it out for things he hasn't done yet, like the bottle and cup. He does it with a spoon, toothbrush and his pacifier.

We won't be back now to visit Dr. Mervis until next year - although I will move our next trip back a few more months to April-ish so we'll have warmer weather. I was glad we made the trip, although I think I got more information last June. I don't think I was too surprised at what they said, but it will be interesting to hear what they say at Children's Hospital next week when we go to THEIR WS clinic

Kentucky Trip Part 1

Twenty-four hours home and it seems like it's been... twelve (considering I have not been able to get everything done on my "To Do" list, although most know how long my "To Do" lists usually are).

Let's start with the fun stuff - hanging out with Tatum, Emma, Lisa and Chris over the weekend was fabulous! I instantly felt at home with them, even though this was actually our first encounter "in person". They were wonderful and fun hosts and the kids had a blast... I know Michael loved all the extra attention Miss Emma laid on him, and Tom and Chris hit it off. I can't believe there is another guy out there like Tom! (I thought they DESTROYED the mold, LOL!)

We got in late Friday night and chatted til later... then on Saturday took a drive into downtown Frederick, Maryland and walked around. We were back in time to watch the Redskins lose (sorry, Chris!) and then Lisa and I went out to watch the Steelers lose! It was a sad day for those fans! Lisa and I hooked up with all her friends, who were really fun to hang out with. I even met a fellow Patriots fan, although I KNOW there are closet ones out there!

After brunch on Sunday we headed for home, promising to return soon. I know that will be an easy promise to keep... we'll do DC next time we're down there and maybe even get them up here to go to the Cape.

What was fun for me too was watching little Tater Tot move about the house, grin wickedly, eat EVERYTHING and play with all the toys around. She was so interested in watching people -- I think she and Tom had a staring contest -- and it was so cute how she would watch Brady tentatively play with a toy. I think Chris and Lisa will have their hands full with these two beauties of theirs. :)

Thanks, Lis for a FABULOUS time.... and although we may not DRIVE in January again, we will definitely be there soon :):):):)