Wednesday, April 21, 2010

Another HUGE Milestone!

Today I got to say goodbye to one of Joey's therapists...his dietitian. This is the first therapist involved with Joey that we have been able to say "we don't need you anymore" to, and it feels GREAT! One less person visiting the house, one less note to add to our ever-growing binder. I certainly don't anticipate we will be giving out walking papers to any other therapists but it sure feels good to cut down Joey's "fan club" by one!

I am pleased to report that Joey is eating extremely well. He gave up Pediasure Plus from a bottle when Ben was about one month old and has never looked back. His tolerance for texture has been steadily increasing and the variety of foods he is eating is the best it's ever been (can you say green beans? peas? beef???). We still have a long way to go to feeding independence as he is not feeding himself at all and still consumes purees and fork-mashed foods, but I am 1000% confident he is getting all of the nutrients he needs on a daily basis and has for quite some time. It makes working on the other stuff a whole lot easier.

Joey also received a visit at preschool from the special education teacher and vice-principal from the elementary school he will be starting in September. I stuck around for the morning and watched Joey through the one-sided mirror window, just to see what they were seeing. I was impressed that the vice-principal came as well, and he sat with me, asking questions, throughout their visit. They were there to assess his needs regarding an educational assistant and equipment he will need in September. While neither of them gave me the warm and fuzzies I do feel like they are caring people who are good at their jobs, I have a lot of confidence that they will do everything possible to make this transition as easy as possible. We are having a big team meeting at the school on May 11th so I am preparing with questions and concerns that I would like addressed.

Ben, my Sweet Potato, is growing and thriving. I can't believe he's 7 months old! I am in love with the little personality he has developed, he is a complete joy to have in our lives. He just began rolling both ways in the past week so I am bracing myself for his increased mobility and the baby-proofing that we'll need to do. We've been pretty active together when Joey is in school, doing mommy and baby yoga and aquafit togther, I'm enjoying our alone time together as I sometimes feel like he doesn't get as much of our attention as Joey did when he was a baby. A mother's guilt I suppose...

- P, J, J & B

Tuesday, April 20, 2010

Grab the Kleenex

Someone brought this blog to my attention, and I mistakenly read this entry first thing this morning, right before the morning rush to get 2 kids out the door and Joey to preschool by 9am.

I have never written about Joey's birth, not even in a journal for myself. The pages in his baby book remain blank, I look at them every so often and say to myself that I'll get around to it.

It's been 4 years.

I can't bring myself to do it. The entire experience, including his birth, me leaving the hospital without him and the 26 days he spent there on his own are just too painful for me to recall in any great detail, though I know I should sit down and write it out before all of the details are gone forever. I'm sure I've already lost a lot by waiting this long.

Then I read this blog. This Mom wrote about the birth of her daughter 7 days later. Her daughter that was born with Down Syndrome, which they were not aware of beforehand. The fact that she threw in some AMAZING photography of the day really had an effect on me.

Anyway, here it is. I warn you, you WILL shed a tear, so get the kleenex.

Monday, April 19, 2010

New Neuro, New Meds

I can't believe it's been 2 months since I updates, time has FLOWN by. Lots of changes and news.

First off, Joey's seizures. We started the valproic acid, Joey took it for about a month and at our follow up appointment with our pediatrician it was decided to wean him off prior to his appointment with the neurologist. It wasn't making much of a difference, he was still having at least one or two seizures a day. The pediatrician wasn't comfortable increasing the dose or changing medications....I brought the videos of the seizures with me to the appointment, and while he is sure it's some sort of "neurological event" that Joey is experiencing he said they weren't common seizures and wanted the neurologist to decide where to go from here. So we discontinued the medication and by the time we met with Dr. M at Sick Kids last week he had been off the medication for about 2 weeks.

Dr. M is the neurologist we met with a few times a couple of years ago when Joey was originally diagnosed with Angelman Syndrome. Once it was determined that Joey didn't actually have AS, and at the time he wasn't experiencing seizures, Dr. M said there was no reason for Joey to remain his patient because his specialty was AS and seizures. From there we have met with numerous neurologists, none of whom we really connected with (to put it nicely!). Now that Joey is having seizures I requested that we see Dr. M again and now he will be our neurologist for good, which makes us very happy as he is a wonderful man.

We met with Dr. M last Wednesday. We showed him the video of Joey's seizures, he thinks they are "complex partial" seizures, rather than "atonic". He has prescribed another med, Trileptal, which is another class of medication and is prescribed specifically for this type of seizure (and various mental illnesses, including depression and bi-polar disorder) so we're hopeful this will put an end to the seizures. Whiel the seizures themselves are short and do not in an of themselves cause any harm to Joey, he does lose most of his muscle control which can cause him to fall. I don't want him to start falling while he's learning to walk! We will have a follow up at with Dr. M in 2 months, along with another EEG at Sick Kids under sedation to hopefully get a better idea of what is going on.

In other Joey news, I am pleased to say that he is eating better than ever before! While it's still mostly purees and baby foods he is eating up to 80 calories in a meal, which is amazing for him. He is eating a lot of things he previously refused, like green beans, peas and cereals. Starting this week we are going to experiment with his prescool snack. I've been sending chocolate pudding for his snack, because it's easy and it's guaranteed Joey will eat it. Often I would pack something else, like a yogurt or fruit, but of course he was refusing it because he knew the chocolate pudding wasn't far behind. Since he is eating such huge breakfasts now I think it's safe to start sending fruit or yogurt and NO pudding...if he doesn't eat his snack it's not the end of the world, he has lunch an hour later. We'll see how this goes!

This week the special education teacher from the school Joey will be attending next year will be coming to observe him at preschool. This is in preparation for our big meeting at the school on May 11th, where we will be getting together with the teacher, the principal and all of Joey's therpaists to discuss his transition to junior kindergarten in September. ~sniff sniff~ I am a little sad that Joey is going to be starting school, a little nervous about how he will cope with such a huge transition and also really excited for his world to be expanded so much. He has made such huge progress attending preschool for just 5 hours a week, I am eagerly anticipating huge leaps when he's attending school 8 hours a day, 5 days a week.

Last month we braved the drive to Florida with both kids, taking 3 days to get down there. While the kids were AMAZING (no whining or crying at all!) that's because we stopped a lot and spent 2 nights in hotels on the way down. The boys and I ended up staying an extra week with Gramma Phyllis and Papa Roy and Jason drove back on his own. I flew back with the boys, and while most everyone was very helpful I don't think I will do that again until one of them is walking and can understand simple directions. It was exhausting! But well worth it, 2 weeks in Florida was a great treat. I'll post photos soon.

- P, J, J & B