Saturday, September 30, 2006

General Update

I had called the geneticist about the results of Brady's calcium test and she replied back that they had elevated again - they were 11.8 now. They had previously been 10, 10.5, 10.8... kept rising over the past year. She contacted the nutritionist, who made an appointment with us next Thursday at (ugh) 7:30 a.m. in town. She will probably outline a new diet for Brady. Catch 22 - the more formula he drinks, the more weight he gains - the more formula he drinks, the less food he eats, which will create more sensory issues later on. Plus he can't be only having formula all the time - he'll be a year old in less than a month! She told me not to add any yogurt or cheese (we were doing Yo Baby yogurt) and not to add any powdered formula to his food right now either (we weren't doing this but I had inquired about it for weight gain). We'll get the whole update Thursday.

She did say we can start him on eating tiny cut up pieces of peaches and pears, which I started tonight. He had this questioning look on his face, but he did sit there and chew it. So funny! Our ST will be very happy. He didn't cooperate too much with her Friday morning because he had just woken up. He kept giving her strange looks, like, "Are you really here or am I dreaming?" Hopefully he'll do great with chewing the food and that will make her happy.

We missed PT this week due to a scheduling conflict and then a death in our PT's family, so it's been a whole week with no Lisa. Hopefully adding in the yoga will still keep him loose for her, but he didn't cooperate too much with that on Friday either. He was a little bit fussy, but I'm beginning to think he was more hungry and didn't want to stretch out. He did enjoy the bouncing-on-my-leg part, but other than that got a little finicky.

Next week we have OT and start swimming! That should be great for him, even though I have to get into a bathing suit. He loves the pool so I am pretty sure I wont have too many problems for him there. Apparently though, they keep the pool at 90 degrees, so I will probably want to come home and take a little nap.

At Michael's soccer game today he was very intense on watching the game - Michael yelled from the field, "Mom! Brady's watching!" He followed them up and down the field while sitting on my lap. At halftime he got fussy and I tried to feed him or stand him up, but not much worked. When the game started 10 minutes later, he sat right down and watched again! Amazing! That's all he wanted in the first place - to watch the game. Good thing - as a brother to Michael he'll be doing for years to come in all seasons.

That pretty much covers everything that's been going on lately - we have our year visit in a few short weeks and we'll see then if he's gained much more weight. He is definitely getting taller, as some of his clothes (thank god!) or FINALLY getting a little too short or stretched too far.

I'm in a funk ~ I'll try to corral my thoughts and write more later.

Monday, September 25, 2006

Optho Update

Today we had our follow-up with opthomology. We were there eight weeks ago and the doctor wanted us to patch Brady's left eye an hour a day to strengthen the right one. They were turning in a bit. Well, the pirate move worked! The doctor thought his eye was much better, and although the eyes still turn in a little, he does alternate using both of them which is good. He is also just maturing over all - watching people more, tracking better, and using both eyes, not favoring just one. We are to go back in January and not use the patch these next three months. We may need to re-patch in the future, or not at all. She thought he might outgrow it.

How cool!!!


The common conversation lately has been about Time. No one has enough Time. There's not enough Time to do anything fun. Are we spending enough Time with our kids? With our spouse? With our friends and family? Did we simplify our life enough to have more Time? Would we get more Time if we didn't work as much?

I'm a busy, get-lots-of-things-done, do-a-lot-for-others type of gal. I have a lot on my plate, but I don't crave the sit-down-and-do-nothing type of life. I like to keep busy. However, I have noticed that kind of lifestyle is not a particularly good one for Brady. He needs Time - Time to learn how to do things and Time to appreciate what he has already done. Since I am his primary caregiver, I have realized I need to adjust my timetable to better suit his.

One primary example is eating. Brady has a high-calorie formula and eating the Stage 2 foods, but he definitely eats more when we slow it down at mealtime. He is so funny, he sits and chews that Stage 2 food... and for those who don't know Stage 2 foods, it's the consistency of applesauce. But he's working those little teeth (all almost 10 of them!) and doing a great job for safe swallowing!

Brady is now 11 months and for the past month or so I have noticed a spurt of growth - mostly in his recognition of things and how alert he is. I also think that FINALLY he seems to start to care when I am not around. As some other moms of WS kids can attest to, this has been one annoying and painful part of WS - his lack of "caring" so to speak. But we are noticing around here he quiets down with me quicker and seems to be a lot more fussy when I am not here. I also see that when we are playing or laying around, he will watch for where I am - play play play, then look up and look for me. Once he sees me, he goes back to town. I was sure all these months he thought I was just another Adult Body... but maybe he sees that it is his mother after all (you know, the one that housed you for nine months???)

You'll see Brady in the Bumbo above - we're borrowing it from OT until we get ours next week. See how nice and straight his back is? I can just envision him in a La-Zy Boy chair with a remote and bowl of popcorn. :)

Monday, September 18, 2006

A Simple Sunday

I like my Sundays simple. I like the traditional getting up, going to church, relaxing around the house, getting things done, listening to football... nothing too strenuous or too insane.

This occurred to me yesterday morning at church. We found a parish we really like in the next town. My eight-year-old son is an altar server, with the blond hair and white and black robes, he looks like the poster boy for the Roman Catholic religion. I sat there, Brady in arm as he looked around at everyone. It was very bright, the sunlight streamed through the stained glass windows making colors dance on people's shoulders. Brady was captivated by these, moreso than the ceiling fans that rotated above. He would watch for awhile, then move his head down the rows of people, as if memorizing their faces. I would hear a chuckle, and know that someone was smiling at Brady, whispering how adorable he was.

After church we file into the gathering center for the required coffee and donut. However, neither my husband nor I drink coffee, and Michael can't eat the donuts because they come from a bakery that has a peanut presence in their food. Most of the times, though, we are able to gather a few Entenmenn's donut holes for Michael and Tom and I eat some bakery item as we linger with friends chatting about all we are up to. Our pastor left for Iraq a month ago and it is so sad to be there without him. He is a Marine who was called for duty, which he accepted for one year. We hope he will not be gone longer. Father Dennis was always quick with a joke, and seemed practically human (!!) when he told us stories of days B.P. (Before Priesthood)

Father Dennis somehow always managed to mention Brady during mass... whether it be to say, "Hey, Brady, your brother Michael is running for mayor" or to mention what a joy new life can be. He blessed him at every mass, and even at a few healing masses as well. I think that's what made Brady so famous... people would come up and ask "How's Brady doing?" and that sense of closeness and family is wonderful. It's as if he has 100 guardian angels looking out for him.

After church we head home for lunch and what not... this week Tom cleaned out the garage and made a storage shelf for the air conditioner. Michael played down the street with a few friends and Brady took a very nice three-hour nap. I picked up and busied myself around the house. To some it would probably be very boring... but it's these nice quiet times that I relish. Especially with the days that lie ahead - PT, OT, Speech, cardio, weight checks.... having just these simple times make the rest of the days not so crazy.

Friday, September 15, 2006

Eleven months and counting

I know it's been awhile since I posted, but things have been so crazy with the new school year starting, that finding time has been a real difficulty. Brady isn't on a real "schedule" so even now, at 11:45 at night I type with one ear listening if his pacifier has fallen out of his mouth.

Today was the first of two new activities: storytime at the local library and Itsy Bitsy Yoga. I signed Brady up for storytime for the lapsit program at the library just as I had with Michael, but when he was six months. The age range was up to two years with Brady's program so I figured there would be a broad range of kids there. Michael and I had done storytime and had a blast - we met some of our best friends there, so I was excited to get Brady going.

I have to admit I did have a little trepidation; after all, Brady was not going to be doing what the other 11 month old babies were doing. I was even thinking that among the babies there, I would have the "special needs" child and I wouldn't really click with anyone there. It was even mentioned to me by a friend that maybe I should wait to go with Brady when he's older to "get more out of it".

But then I remembered why I signed up in the first place: even though Brady is kept quite busy with his doctor appointments, he visits with friends but that is it on any "normal" activities. Why shouldn't I do the things with him I did with Michael? This would be good for Brady, and me, because that's how we plan on raising Brady - he can do whatever he wants to. Meaning that we will raise him with the notion that he has no ceiling, no "he can't do this or that because of William's". Any limitations he has in his life will not be because we don't think he can't do it or that he hasn't even tried.

Storytime was fun; nothing thrilling but not complicated either. There were three toddlers in the 17 month range, twin girls and another baby who were all about 8 months, and Brady. When we first introduced ourselves I mentioned he was 11 months old - got the look of "wow, is she sure he's that age?", then proceeded to say he was a peanut. Someone asked, is he crawling, walking, etc now. So, knowing we were now to see these people for two months, said, "No, he has William's Syndrome, a genetic condition where he develops late. He'll do all those things next year, probably." I said another line or two but that is basically all I said. I was happy to see that when the librarian read the book to everyone, Brady watched her and the pages. He watched everyone a lot and didn't cry at all. They all loved his natual mohawk.

Yoga was a bit less intense. Brady was the oldest, but since there wasn't time for chitchat, I didn't have to explain why he wasn't crawling or chatting away or trying to walk. I did have to fill in every line on the medical history paperwork, though. With Michael, it was just "Peanut allergy". With Brady Bunch, checkmark "yes" for cardiac problems. Has he had surgery" "Yes" for inguinal bilateral hernias. Any other conditions? "Yes" for William's Syndrome. Anything to be concerned with health-wise? "Yes" for low muscle tone and tight joints. We're not taking any meds right now, so that was one box I could leave empty.

The yoga was wonderful, though. Some of it was the same as his PT work, but he went with the flow, and seemed to be really watching me when I said in my sing-song voice all the little drills. The mirror wall was great to watch him when he turned away from me and I could see how he sat nice and tall. The end had a little darkened-room quiet time where I am sure many a mothers have fallen asleep.

It was a strange day; such ups and downs. In one instance it seemed like William's was the center of my attention, whereas in another, it played no part at all. I'm sure most of my days will be like that.

On a side note, Lisa, his PT, came armed with a better sitting position in his high chair last Thursday. Apparently she's been reading my blog and not too happy with the Braidster slouching over in his chair in some pictures I posted. It's actually the foam bath teddy bear you buy to give your newborns baths in. Well, when you turn it upside down, the head part is perfect for Brady's little butt. That's him, above sitting straight and tall in his chair now. It's teaching me not to slouch too much.

Friday, September 08, 2006

Brady's trip to the Geneticist

Today we had our yearly visit with the geneticist. It has only been six months since we last saw her, but from now on it will be yearly. She basically asked questions about his development and checked him over before we had to bring him for blood and urine testing for his calcium level.

She said his muscle tone was pretty much in the realm of what they expected, although she was plesantly surprised that he would grasp her fingers and pull himself up to a sitting position. She noted he was tight in the hips and knee, which we knew, but overall said she was happy with his PT work and we must have a great PT. Yeah! Thanks, Lisa! (That's Brady doing PT on the left).

However, she did say that she would have expected his speech to be a little more progressed by 11 months. He is saying the vowel sounds (luckily in her presence, too) but not babbling as often and she questioned his hearing exam. Apparently our January 5, 2006 hearing exam wasn't in the computer at Children's Hospital so she didn't know he had a retest (he had failed his left hearing exam at birth). I told her he did pass it and that I would fax her my paperwork on that. I will mention it to our Speech Therapist and see if there's anything more we can do regarding his speech. He only started the "chewier" foods recently and I know that is a big help on his cheek muscles. He did seem to enjoy the popsicle I had last night, so maybe we can start him off with ice cream sundaes! :)

She also mentioned we don't need to see Neuro, which our pedi had wanted us to check (because of his delay). Yeah! One doctor we don't need to go to! My mother, who was with me for the visit, asked the geneticist half kiddingly when Brady would smile. The doc smiled and said she knew he would smile, but couldn't give her a date, like December 6th. So, of course, we all think he's going to give us a big broad one on December 6! :) Later on, though, my mother was chatting with him and he gave her a half-smirk that she said, "I'm counting that as a smile!" Which of course I responded, "That's because you just want to tell everyone the first thing he smiled at was his grandmother!" :)

One other sidenote, the geneticist also commented that we were getting a lot of services for Brady - something to be thankful for, I know. We currently have Physical Therapy twice a week; Speech once a week; Occupational Therapy every other week; and we will start swimming with OT every week at the end of Sept. I'm not sure what other parents are doing for their child with WS, but I am glad we are doing as much as we are. I have also signed him up for yoga classes with a girlfriend on my own, and that will be once a week for the next eight weeks. It will be a good thing for Brady, but also a little guilty pleasure hanging out with Angela and James. :)

Tuesday, September 05, 2006

Simplify your life

At what age is it that you realize it is just not that important? And by "it" I mean... pretty much everything you thought was important?

Think about it: a fire erupts in your house. What do you grab as you run out? It's an age-old psychological move to show you how "things" are replaceable, the fact that you left the house was what was important. You have yourself... your friends, family. A year ago we discovered that my 86 Barbie dolls were laying in a moldy water-soaked box in my basement. Now, if you know me, you know these were the complete signature of my entire life. They were all I ever loved. I would once-in-awhile let an old boyfriend's daughter play with them but only after she washed up first. Then to come and find out they were all gone.... there goes my childhood.

I'm not sure what I was planning to do with them. Give them to my non-existent daughter one day, perhaps? Be buried with them? All I know was that I wasn't about to EVER toss them. So the decision was taken away from me. I had no choice but to let them go. After I made the long procession to the trash can with the box, quietly humming "Be Not Afraid" to myself, I realized that I just threw away the one absolute thing I wouldn't ever throw away. I realized then that I could let things go.

Now "things" has a pretty wide description. I do keep samples of Michael's pictures he draws, copies of some of his work from each grade, just so one day he can look at them and see how smart he was. I am learning I don't need to keep the statement of every electric bill, phone bill or credit card after reconciling. Shred, shred, shred. I am letting go of baby clothes that I know I wouldn't dress my children in, but kept because they were decent wearing and fit. Donate, donate, donate. I am not volunteering for every event the school has or going to every Scouting or sport or whatever event either. Rest, rest, rest!

I have to remind myself every so often to simplify things: to let go of projects that aren't working, to relinquish control of ideas that don't help, to clean up and throw out, and to realize when sometimes you have outgrown people, places and things.t's not sad... it's a little exciting to know you are moving forward with less to hold you down.