Tuesday, April 29, 2008
Me-Do you want signing time?
B - Brady shakes his head for no
Me - Do you want a drink?
B - Brady shakes his head for no
Me - Show me the sign for what you want
B - Shows me his sign for "signing time"
Me - (exasperated) Brady, TOUCH what you want
B - Waddles over to his bucket of toys and touches the lid
Me - Oh, do you want me to open your bucket?
B - (excitedly) "Yeeeaahhhh. Yeah."
WORDS. THEY WERE WORDS. Clear, perfectly formed words. Words with no consonants, but words nonetheless. Troy and I whipped our heads around and watched each other's jaws hit the floor. "Did that REALLY just happen?" Troy confirmed that it did indeed happen and that I wasn't dreaming or high from my cold medicine. Then Troy made a simple statement that moves me to tears now that I think about it. "Do you realize that we just heard what his voice really sounds like for the first time?" We did. And it was the most beautiful, nasal little boy voice we could have ever imagined.
We tried to shrug it off as a fluke, not wanting to get too excited. Brady has, on occasion, answered "eeeeeees" as "yes" to questions. And then he forgets how to do it for months at a time. But Troy just called me at work to tell me that he got another "Yeah" when he started the car and asked Brady if he wanted to listen to his music.
I couldn't think of a more appropriate time to show this photo of our naked boy who is covered in mustard and appears to be singing along with Daddy. Now please excuse me while I go pick my heart up off the ceiling.
Friday, April 25, 2008
- 6-8 months - could sit in bumbo (head control) for a minute or two.
- 10-12 months - could sit in bumbo or exersaucer for extended periods. Also started bearing minimal weight on his legs.
- 12 months - rolled from stomach to back, although he didn't do it very often. He was just never much of a roller. He never really rolled from back to stomach. He just HATED his stomach and has never tolerated tummy time until just recently (around 30 months).
- 16 - 18 months - could sit up for very brief periods.
- 18 - 20 months - could officially sit up. However, he had no defensive reflexes (putting hands out to catch himself) and could not get to the sitting position by himself.
- 20 - 24 months - defensive reflexes slowly improved and he could catch himself from tipping over most of the time, however could still not get to sitting on his own.
- 24 months - started crawling on his 2nd birthday. It was slow at first, he would take 2-3 "steps" with his arms, then sit up and rest. He is now also able to get in to the sitting position on his own but continues to roll to his stomach and use his arms to sit up because of his weak belly.
- 27-28 months - started pulling up to standing. Could stand unassisted for brief periods. Could take 2 - 3 steps before falling into our arms. Can walk with his fake walker (see below).
- 29-30 months - can skillfully walk around holding on to furniture. Does not have good defensive reflexes from the standing position.
- Currently (33 months) - Brady is pretty good at walking. His defensive reflexes have improved a ton, meaning that he can often (90% of the time) put his hands down on the ground and stop himself from falling on his head. He doesn't pay attention to where he is walking and will often trip on toys or might trip when moving from one surface to another (tile to carpet, etc.)
We have a very talented Physical Therapist who Brady has seen twice a week for the past year and a half. I wish I could share all the PT details but Troy has taken Brady to most of these appointments. Troy will post the details later but for now here are just a few toys/tools that have helped Brady.
Our PT has always used a swing similar to this one during all of Brady's appointments.This swing helped Brady's trunk control tremendously. He required a lot of help in the swing initially but now swings and spins wildly in it without losing his balance. We have toyed with the idea of getting one at home because he really craves swinging for sensory input. If you do get one make sure to buy several mats to go underneath. We got some affordable mats at Costco and they were great for Brady to sit and play on when he was still falling over a lot and they saved Troy’s knees while Brady was learning to roll over, sit, and crawl. They allowed us to let him fall and eventually acquire defensive reflexes without hurting himself. This was the hardest part about watching Brady learn to walk. We used to wonder if his reflexes would ever kick in. We used to watch other babies fall when they were learning to walk and could not believe how graceful it was. I will never forget the sound the first time Brady went straight to the tile.
As I mentioned before Brady has better tone in his lower body. In fact we just met with an orthotist who said his achilles are a bit on the tight side. We never used a walker because by the time Brady was coordinated enough to push one he was very close to walking on his own. We did buy this push cart...
It is $24.99 at IKEA. It was the only push toy we could find with a handle tall enough to accommodate a taller/older toddler. Brady would lean his body weight into it and it would shoot out ahead of him (with Brady falling on his face) so we put a 10 pound weight inside to slow it down.
As for ankle support our PT did not feel Brady required DAFOs so we have been using orthopedic insoles along with a well-structured, supportive shoe. I would love to buy him a pair of little Chuck Taylors but they are just fabric with little support so we stick to miniature versions of shoes we might work out in.
I'm not really clear on what timeline is expected for kids with 1p36 deletions with respect to walking. I hesitated to post Brady's timeline because I remember how frustrated I used to get with typical timelines. When I was pregnant I signed up for a weekly email that told me what exactly was happening with the baby and after Brady was born the emails switched to developmental milestone updates. Every single week I would cry when I got that stupid email and realized Brady had missed yet another milestone. Then I would take him to the Dr. and they would tell me he was fine. $%*@! So please don't rely too heavily on our timeline. It is simply our experience to date, and while our kids have so many similarities, they will always be unique.
Saturday, April 19, 2008
New this week... getting to standing without pulling up on anything...
It catches me off guard every time Brady takes off on his own towards whatever catches his interest. Our communication with him is currently limited to his signing and pointing, following his eye contact, and a lot of guessing. Walking independently has improved this process as Brady can get to most of the things he wants. Often he will sneak up behind me and growl to scare me. He then leads me by the hand to our brown chair to read books.
The feeling of his hand in mine as we walk side by side is indescribable. This is something I have silently hoped for but have learned not to assume would happen. I stopped wishing for these milestones aloud and instead have tried to accept whatever may or may not come. This approach has lessened the sting when therapist after therapist says "he will never speak." And this approach has made every milestone, no matter how seemingly insignificant, all the more reason to rejoice. As a parent to a child with special needs I have learned there is a fine line between hope and denial. It's a tight rope I continue to learn to walk every day. It is in this way that Brady and I have learned to walk together. He is a stronger force and a more significant teacher than I could ever have imagined before he came into my life. Love you, Bubs.
Sunday, April 13, 2008
We also had great fun on Friday night with Crystal and Chris who have frequent business meetings in Phoenix. We stayed in the same hotel downtown and had breakfast together. Troy adn I watched nearby fireworks from our window and rented movies while Brady slept. Who knew Brady would love hotel life so much? Thanks for the room and the fun, Crystal and Chris!
I dare say we actually did some stuff this weekend, none of which was documented in photos! I'll leave you with this little tidbit in lieu of a photo...
It's going to be a looooong summer!
Tuesday, April 08, 2008
Monday, April 07, 2008
If everything comes together as planned this will be a trip of firsts. Neither Troy nor I have have been to Boston and we have never traveled with Brady farther than the 1.5 hour flight from Phoenix to Salt Lake City.
In my perfect world we would take along a helper so Troy and I can attend the meetings without distraction and can sneak off for a Red Sox home game which will conveniently occur during our trip. Also, Brady will be a perfect angel on the lengthy flight which will be paid for by one of the organizations I am learning about which pays for families to attend medical appointments or conferences.
In reality I just hope that we make it there in one piece, that the fall weather will cooperate and that Brady will have a seizure free trip. I will gladly search the couch cushions for funds and juggle/wrestle Brady through each and every meeting. It will be worth it to meet all of the helpful online voices in person that make up our newfound 1p36 family.
p.s. check out our new "How Is Brady Today?" counter. We are currently over four days seizure free!
Friday, April 04, 2008
Wednesday, April 02, 2008
This is not a bad thing. This is not a scary hospital stay. The type of seizures Brady is having are not dangerous to his health in any way. They are just stressful and in need of being figured out.
We have never been able to record one of Brady's seizures while he is hooked up to an EEG machine and therefore our neurologist is to some extent flying blind when helping us pick the right course of treatment. We stayed in the EMU for three days in October and Brady had no seizure activity whatsoever to record. Instead, he was happy as a clam (see below) and the nurses treated him like a rock star because they don't typically take care of little ones.
This morning our doctor met with us for almost an hour and a half and patiently answered each and every question. I love him for this. It's so rare to get undivided attention from physicians. The EMU is usually booked out at least a month and somehow our Dr.'s staff got us squeezed in at the last minute. I came in to the office this afternoon to check in with some clients and Troy just called me to say they already have recorded one seizure. How strange is it that we were both pumping our fists and yelling "YES! HE HAD ANOTHER ONE!" This EEG information will be extremely helpful in determing exactly what type of seizures Brady is dealing with and from which part of the brain they originate. Also, this means we won't have to spend an indefinite amount of time there - last time we only lasted three days trying to "corral" Brady in a little pen on the floor and keep him from pulling off his "special hat" and the wires underneath.
Brady is feeling pretty well. He is sleepy and cranky for an hour or two after each episode but is very much himself during different windows of time throughout the day. This morning we went to the park. Tonight we will spend the night in the hospital. Epilepsy is weird that way.
We know it will take some time to find the right meds but we are very hopeful and encouraged now. We still have many, many options to try which is a great thing.