Tuesday, April 29, 2008

Music to my Ears

Last night Brady was pointing and grunting at something and I couldn't figure out what he wanted. I started in with my usual list of questions...

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

Walking Details

I thought I would share more detail about Brady walking as I know a few other 1p36 parents are reading our blog. As do many other kids with developmental issues, Brady has low muscle tone (hypotonia). However, he has always been more hypotonic in his upper body and abdomen than in his legs. This probably explains why it took him so long to master sitting but then he quickly progressed to walking. Here is an approximate timeline of Brady's gross motor skill milestones.

  • 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

Learning to Walk

Brady is now taking Keppra and has been seizure free for more than two weeks! We didn't realize the extent that Brady's development was being affected by the seizures until they stopped. Brady's new walking skills had started to regress as his seizures increased. However, in the past two weeks Brady's skills have resumed and he has hit several new milestones. Since I will likely never figure out how to post videos I took some photos of him walking in the park last night.

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

Date Night

Last night Troy and I went out to dinner WITHOUT BRADY. This was our first date of 2008 and we can't thank the McNaughtons enough. Troy has known them since college and we are so lucky they live in AZ! They are great friends and were, of course, were great with Brady last night. He didn't even notice that Mom & Dad left and went to dinner. Unfortunately they also introduced Troy to Guitar Hero and I am never going to hear the end of it. G.H. is way too hard for me and made my hands hurt! Has this happened to anyone else or am I getting old and arthritic?

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

Growing Pains

This week Troy and I met with our local school district to kick off the monstrous process that will eventually be Brady's Individualized Education Plan (IEP). This IEP will determine where Brady will go to school this fall and the level of services he will be eligible for. Our every day vocabulary is filled with new acronyms which I often forget are foreign to many parents. I suppose I could write a lengthy post defining these abbreviations but today I just wish there was an acronym for how I feel.

On Tuesday Troy and I observed several special ed. pre-school classrooms and were quite shocked by what we saw. The kids looked normal. They sat in chairs around a table eating snacks and chatting while their backpacks were lined up near the classroom door. This setting was in sharp contrast to other groups with which Brady is involved where he might be one of the few children who can walk, who can see, who can eat.

I know pre-school is what Brady needs. I know these classrooms are full of typical students whose purpose is to model appropriate development and behavior for the differently-abled. But will they understand Brady? He can sit in a chair but will fall at any moment. He can eat but will stuff his mouth full and choke if not closely monitored. He can't talk. He will have a freak out of epic proportions and burst the capillaries in his cheeks if someone forces an uncomfortable or unknown activity upon him. How will a new teacher possibly begin to understand the intricacies that are Brady while juggling 10 other children?

I imagine these feelings of fear and concern are not unique. This is likely how all parents feel when they prepare their little ones for that first day of school. Or maybe how parents feel when their children charge out of the house for the first time, alone, with car keys in hand. And quite possibly this is stirring up some of what I felt when I dropped Brady off at daycare on his 42nd day of existence, thinking "how will she feed him? and how will I possibly get through this day?" And then I returned to a happy, full baby and realized that this day was not hard for him. It was only hard for me.

I know Brady needs this. He needs to be around more kids. He needs to not be the center of attention at all times. He will grow and thrive and learn. And I will find a way to manage my fears and let go, just a little bit, of my baby.

Monday, April 07, 2008

Boston or Bust

We belong to a yahoo group consisting of other families or caregivers of children with 1p36 deletions. These parents are amazing, offering support and advice to virtual strangers on a daily basis. This fall the group will hold its second annual conference (we weren't able to attend last year's in Jacksonville) and we all voted on either Cincinnati or Boston for this year's location. Any guesses as to our vote?

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

Home Sweet Home

We're home! We were able to record one seizure, got tons of face time with various neurologists and epileptologists (a new word I learned this week) and have put Brady on a new medication. So far, so good. We are almost 48 hours seizure free.

Now if we could just get the glue out of Brady's hair. The nurses suggested mayonnaise - so gross. Brady smells like an egg salad sandwich but his hair has never looked silkier ;-)

Wednesday, April 02, 2008

Seizure Update

Just thought I would check in quickly and let everyone know that, due to an alarming number of seizures in the past 24 hours, Brady has been re-admitted to the Epilepsy Monitoring Unit at St. Joseph's Hospital in Phoenix.

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.

Tuesday, April 01, 2008

Identity Crisis

After numerous complaints that our blog's polka dots were hurting Troy's eyes and were not "man blog friendly," I have simplified our blog template with a strange greenish brown blah color. I will miss the dots but am letting them go for the sake of encouraging more man posts.

I know it sounds silly but I have been thinking a lot lately about what I want our blog to be about. I have been wanting to post a lot more about 1p36, diagnosis, therapy, and the differently-abled in general. It's the one topic on which I feel I really have something to say. And my something to say has been nagging at me like crazy! I am such a rookie in all of this. Blogging, parenting, disabilities, etc. But I think I'll shove a bunch of info into the blogosphere anyway and learn as I go.

Please keep the computer on, Grandma, our little blog is certainly having an identity crisis but will surely continue to feature countless photos of the Bubs.