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).

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 :):):):)

It's been a crazy week, as I am sure it has been for everyone. Christmas has come and gone so quickly, although the toys piled in my house are a testament to the fact that Christmas was here. Plus the fact we are getting no sleep, what with playing Guitar Hero III every night til 11:30... does that make us bad parents??

On top of Christmas, we celebrated Tom's 40th birthday with a birthday weekend filled with events (what a great wife he has!), plus we have also been trying to gather together our things for our drive to Kentucky to see Dr. Mervis. We leave on Jan. 1. THEN, a week and a half from getting back from Kentucky, we are going to the Children's Hospital in Boston's WS clinic over three days. Phew!

One great big light from all this chaoticness will be hanging out with Lisa on our way home from Kentucky. Yeah! We are so very excited.

Oh yeah.. Christmas? We had an excellent day and Michael loved all his gifts. Brady's favorite ( I think) was his fleece blanket I bought at Bass Pro Shop... he kept pulling it up over his face to play peek-a-boo. :) And a little present for Tom was Brady's first real sucking from a straw. Of course it was Pepsi and now I think he is addicted... he definitely has a little sugar issue, methinks.

Patriots are 16-0!!!

In case you are living under a rock, the New England Patriots are now 16-0 ~ Woohoo!!! Michelle - I know you are celebrating with me out in the Southwest!

Merry Christmas!

Amidst the malls, Playstations and wrapping paper... let's not forget what Christmas is all about. Thank you to all my blogging buddies who have helped me, cried with me and laughed with me. Merry Christmas and Happy New Year!

The bloodwork is back and for the most part, everything is relatively normal. Calcium is back to 10.2, from 10.6 two weeks ago (I stopped giving him yogurt every day - every other day is fine, apparently). The only thing that is puzzling to his doctor, is that his magnesium and phosphorus levels are elevated. His doc found this a little weird and asked me to check with the nutritionist if there are certain foods he should avoid. I reminded her that we just started vitamin drops since we are off the Enfamil now, and she said that might be a reason for the elevations. So we stopped the vitamins until I talk to the nutritionist and his next round of bloodwork in a month.

Anyone else have these weird elevations?