First Week of School

Tuesday was Brady's first day of school! He was so excited when we pulled up. Of course he started running the opposite way so he could get closer to the school buses.

What is up with little boys and large vehicles? He would have sat for hours watching the buses (another favorite spot is the airport pick up lane).

Can you tell which one of us had a hard time letting go?
He left us in the dust and marched into school.

Brady's teacher let us follow him into the classroom where he promptly ignored us and started smiling and bouncing on his butt for circle time. We left, I made Troy go look at some land in the west valley with me for work, then we headed back and picked Brady up four hours later.

The Brady we dropped off was NOT the Brady we picked up. He did great at circle time and, from what we heard, cried/fussed/slept the rest of the day. He wouldn't eat his snack or lunch so we made an emergency stop at Chic-Fil-A. Look at this exhausted boy.

Brady ate but wouldn't really respond to us in any way for several hours. He couldn't calm down and sleep until later that night. Troy and I were both so upset and worried. I held my breath the next morning when I pulled up to school once again. Just when I thought Brady would start screaming, he clapped and squealed. I couldn't believe he wanted to go back to school and when Troy picked him up later that day his teacher reported that "he had a phenomenal day."

Huuuuge sigh of relief. Thursday also went well and I swear this kid was so bored on Friday and over the weekend. I can't wait to drop him off on Monday morning!

Practice Run

This morning was Brady's pre-school orientation where we met his teacher, aids, school therapists and the other students. There will be 5 boys in the classroom and 4 adults (one teacher, two aids, and various therapists that will rotate in). We are seriously spoiled with that ratio and have been able to put aside many of our concerns. The teacher was very experienced and confident and had tomorrow's schedule written on the board. The classroom was adorable - I have never seen such a huge room full of miniature stuff. Everything was at toddler eye level, even the kitchen sink. Brady is one of the youngest and most delayed students so I know he is going to learn so much from the big boys. Tomorrow is the first official day of school so we'll see how things go.

Brady's favorite activity lately is helping us with dishes and laundry. In fact, I can get him to do almost anything if I call him my helper (oh, how I hope this stage lasts!). He was thrilled to discover that his classroom had several little kitchen and laundry centers.

Every toy in that room was in the kitchen sink after the first hour so Brady moved on to his second favorite activity, bouncing on his butt. Let's hope he soon figures out those chairs are for sitting.I'm having trouble wrapping my mind around the picture below. We don't follow behind Brady anymore with our arms hovering out to catch him. Still, I am usually close by and have never watched him walk from this perspective. "Walk" isn't even the correct word - look at him strutting his way down the school hallway!

If he could talk I'm pretty sure he would say What you looking at, Mom? Get outta the way!

Lazy Blogger Here...

I am having a hard time getting back into the blogging swing of things after coming back from our trip to Utah a few weeks ago. I keep starting a gigantic post with about 100 pictures from our trip and I never finish! I WILL eventually post it because we had such a great time I don't want to forget any details. In the mean time, we are doing great and managing to survive the heat. Troy and Brady are doing a lot of this...

And, of course, a lot of therapy...

My assignments at work lately have gotten really complicated and are always taking up more time than what I had planned. Luckily Brady has several therapy appointments near my office so I can usually see him at lunch if I can't make it home before bedtime. Still, it's hard on me to be away from him. He is getting so grown up, signing "mom" sometimes when Troy picks up the phone at home.

So please forgive me for checking in on my fellow bloggers via Google Reader and rarely leaving any comments. I love reading about all of your vacations and summer happenings and will be checking in properly very soon.

Anticipation

Brady is getting steadier and more confident in his walking. Look how effortlessly he cruises around with toys in hand...


He can also stand still in the middle of the room...


We love that Brady is confident and now prefers to walk everywhere. The only problem is that he has to concentrate solely on walking or will take a nasty fall which is a whole lot different when you are in the parking lot at Target versus at home on the cushy carpet! At our IEP meeting we noticed that the floors were vinyl or thin, commercial-grade carpet with no padding. It's hard to imagine how things will go when one of us isn't hovering and ready to catch Brady. His defensive reflexes have improved tremendously, but it's the unexpected stuff like tripping on something he hasn't anticipated or attempting to lean on kids who might move out of the way at the last second that is causing most of Brady's falls.

In our IEP we agreed to purchase a helmet for Brady to use while on the playground. I guess we will just see how things go while he is indoors at school. He has been known to fall off chairs unexpectedly so we have been practicing for school...

I have never been so excited and nervous about something as I am about Brady going to school. I can't wait to meet his teacher and I am thrilled that Troy will get a break for a few hours each day. I guess the hard part for me is that I can't ask Brady about his day. Do you think they will let me peek through the windows for the first few weeks? Hmmm... didn't think so.

IEP Is Done!

Troy has been diligently working for months on all the necessary steps to put Brady's Individualized Education Plan in place. Brady was evaluated by the school district on Tuesday, we had our big meeting on Thursday and tah-dah we are done! There were so many steps that had to take place prior to this meeting, we are relieved the IEP is now in place and that we finally know the where and when Brady will go to school.




We had heard many horror stories about this process (parents having to fight the district, sue the district, etc., etc. in order for their child to get an appropriate education). I even attended a one-on-one coaching session to learn how to better advocate for Brady during this process. Thankfully, the process went more smoothly than we had anticipated. Our local district was very efficient and had the school psychologist, PT, OT, speech therapist and a pre-school teacher evaluate Brady simultaneously. The same group then met with us two days later and had his entire education plan loaded onto their laptops in time for our meeting. Troy and I were up until 1:00 am that morning creating our own list of everything we wanted for the Bubs and those school people delivered everything on that list and a little bit more. No fighting or pushing for services required.



Because Brady fell into the severely delayed category in most areas of development our IEP team suggested he attend a different pre-school program which has a 2:1 child to staff ratio rather than the typical 5:1 ratio. Additionally, Brady will attend four hours per day, four days a week rather than the typical 2.25 hours. Obviously this arrangement has calmed many of our fears regarding Brady's personal safety and communication abilities. We were a little disappointed that he will attend a school nine miles away rather than the elementary school down the street, but we have the choice to move him to the standard special ed. preschool at any time during the school year. That was the most surprising part of this process - that we actually had choices.



The three of us will go to school together on August 11th to meet Brady's teacher and give her final instructions regarding his seizures and feeding instructions. Then our little Bubs will start school on August 12th! I had just started fretting about finding a backpack and lunchbox to replace Brady's diaper bag and look at the surprise I got in the mail the other day...

My dear friend Michelle sent this "just because" and I hadn't even told her about Brady attending pre-school. Isn't it amazing how the people close to you are just on the same wavelength sometimes? Thanks, Michelle!

By the way, Brady was determined to be only moderately delayed in gross motor skills and social development. I'm positive this is due to Coach Farnsworth's daily sports training and the fact that Brady dazzled those people with his smile!

p.s. I found and excellent blog regarding disability advocacy for anyone out there who might want tips in effectively advocating during meetings such as an IEP. Enjoy!

Mystery Me

Okay, so several Internet friends thought that was me in the pool with Brady and I am realizing that I NEVER post photos of myself on the blog! Oh, to be in my early twenties and look like Brady's cute, tan swimming teacher :-)

I hate having my picture taken. I keep saying I will be in more pictures when I lose weight, etc, etc. It's been 3 years since this whole ridiculous picture stuff started so I just plain need to get over it. The most recent picture I could find was from Halloween - here I am.

Swimming Lessons

After my last post I thought it best to show some fun stuff going on around here. How about a picture-intensive post for once?

Our little fish is LOVING special needs swimming lessons. I wish I had zoomed in closer because he has a huge grin in most of these pictures.

Entertaining the big boys (or likely the other way around). A couple of the typical kids who go to the pool with their special needs siblings have adopted Brady. One always asks his mom "where is my baby?" when they get to the pool. These boys are particularly tolerant and understanding of Brady's less typical behavior - they are just amazing kids.

Playing Toss the Ring with the big boys. "Can we put it on his head and see if he can find it?" He he.

Showing off more sticking-out-of-tongue skills...

And because I just can't stop myself from typing lengthy paragraphs, I have to tell the cutest story. One older boy with Down Syndrome was struggling to get his brand new goggles out of their packaging. Troy offered to help and was able to break open the plastic (I heard they now make special scissors just for this...must find some). Later I overheard this boy telling his friend "Did you see that muscle guy? He is so strong. Yeah, he's a GREAT guy." A lengthy conversation ensued regarding exactly how great this guy is and exactly how strong his muscles are. Needless to say, Troy and "the smiley one who always wears sunglasses" are very popular at the pool!

In THAT Place

So... yeah, I had to reset the seizure counter yesterday. This is a frustrating setback. Brady had a low grade fever yesterday and we are hopeful that this was the cause of his seizure and not some other underlying issue. When we last met with our neurologist he explained that the odds of a seizure medication working (and by working I mean getting rid of ALL seizures) go down with each medication failure. If one medicine doesn't work there is still a strong chance that the second will. But if two meds fail, the chances of success diminish substantially. Three or four failures and one may be facing Intractable Epilepsy. Thankfully, Brady is on a medium-ish dose of Keppra so we could increase the dose several times before we have to switch to or add another med.

I thought I was used to these episodes and would just roll with it. But the truth is that the last two months without seizures have been life changing and I am terrified that might change. We have gone out on dates. I have been better able to focus on work while I am at work. Brady hasn't missed any therapy appointments, play dates or swimming lessons. We have all routinely slept through the night. I have even started to shed some of the 50 extra pounds that have piled on (my chosen method of stress relief) since Brady's birth. I am trying to learn from all of this and be able to take care of myself better whether or not stressful circumstances are present in our life.

So this is me panicking and projecting one five-minute episode yesterday afternoon into the indefinite future. I have been reading a book on the process of grief that every parent of special needs children goes through. This panic is normal. It's part of the process and I am learning to better recognize this and not get STUCK in this one particular place. I have also learned it's normal to jump back to different phases of the grief process even though I have already reached (or thought I had reached) the phase of acceptance. I really should have read this book, um, TWO YEARS AGO!

The book is out of print and was written in the '80's . The language is a bit out of date (ahem, somewhat un-PC) but the message is timeless. I would recommend it to any parent of children with special needs. Thanks to the Foundation for Blind Children for introducing us to the book through their After the Tears Program. And thanks to Troy for bringing me a copy after I couldn't make it to the program last week. I am gearing up for the meeting this Friday because I always ugly cry in front of those wonderful people!

More of Him

We have been working on this little development for, oh, a year and a half.


If you squint just so, you will see Brady's little tongue sticking out. Of course we have seen his tongue before, but it has never ventured past his lips. The muscles in his mouth have been especially slow to develop and the least responsive to therapy. Slowly but surely Brady's oral defensiveness has lessened and he has allowed us to touch his cheeks and lips and brush his teeth. On Saturday morning he gave me his best Good Morning smile, stuck out his tongue and hasn't stopped since.

This may sound silly but when you see a part of your child that has never shown itself before it's a really BIG deal. I can't stop thinking about it all day long! I call up Troy from work and ask if Brady is still sticking it out. Later Troy texts me a picture of Brady licking an ice cream cone. This boy who has had feeding therapy weekly for the last 18 months finally licked one of the sugary treats his therapist has patiently put in front of his mouth all this time. I am anticipating a later post that goes something like this... "how do I get him to stop sticking his tongue out at people?" He he.

Catching Up

Certain family members have informed me it's high time for some new pics of a certain little someone. What can I say, we had a broken digital camera (AGAIN) and I have been working some serious overtime lately. Not that I'm complaining. Work has been extremely slow since Christmas (and, ahem, I work on commission!) so I am thankful for the work. What a great feeling to wrap up my last deadline today, head home early and go out to dinner with my boys. Troy is working on dropping Brady's afternoon nap so it was no surprise that Brady started to drift off to sleep mid-chew. He slept in my arms while I ate my Pei Wei spicy chicken salad with one hand. I am cherishing each and every one of these cuddly moments now that the Bubs is becoming more mobile with each passing day and far less interested in me and my brown rocking chair!

Troy has been very busy coordinating the massive paperwork and extra appointments that must take place in order to 1) get Brady's fall pre-school situation set up and 2) get us qualified for long term care. We received our long term care approval two days ago and feel EXTREMELY blessed right now. This means that Brady will be able to continue all of his therapies in addition to pre-school. We won't have to say goodbye to our wonderful therapists and bear the responsibility of habilitating him on our own. Long term care will also cover the medical expenses that our insurance company doesn't cover. We received a secondary insurance card with zeros next to "Office Co-pay", "ER Co-pay", "Prescription Co-pay", etc. It's difficult to get approved for this program, therefore we're still in a bit of shock over the whole thing. Ironically, we learned it was Brady's recent Epilepsy diagnosis that likely solidified our acceptance.

This is a program specific to the state of Arizona. Most states have similar programs, but they vary widely in funding. We have been told if we lived in New York or California we would get so much more. Unfortunately, in other states, the programs are vastly under-funded and countless deserving families receive no assistance whatsoever in raising their children with extraordinary needs. I hesitate to give the details because I just find this whole funding situation so unfair. But I truly believe that knowledge is power and I want other parents to know what is available out there. On top of the medical cost sharing, we are qualified for a certain number of hours of respite care in our home each month. Assuming we can find a respite provider we are comfortable with, the state will pick up these costs as well. Respite care is meant to allow parents time to run necessary errands, spend quality time together, or simply do household chores that so often go undone when you can't take your eyes off a high needs child. Troy and I learned the hard way how exhausted and depleted we were capable of becoming when we dealt with the escalation of Brady's Epilepsy a few months back. This program will provide us a safety net, both functionally and financially.

It feels strange, and a little humbling, to receive all of this help. Brady is doing so well right now that some days I almost feel guilty about all of this help. Yet other days I see typical three year olds and realize that the gap between Brady's development and theirs is starting to widen. I constantly hear of this window of time in which kids' minds are so capable of learning and I am so grateful we have some serious assistance in maximizing what is left of this window. The bottom line is we are lucky... in so many, many ways. I said this to an ER doctor once and he laughed at me and muttered under his breath, "yeah, reeeally lucky" as he looked down at Brady. What an A-hole. We are lucky I didn't lose Brady at 25 weeks when I started to dilate. We are lucky that our geneticist's initial hunch that the Bubs had a life-limiting metabolic disorder was wrong. We are lucky that Brady is silly and loving and stubborn. We are lucky to have supportive friends, family and countless professionals willing to help. Just plain lucky.

We are also lucky that Brady met a new friend. We affectionately refer to J. as "hair twin."

34 Days & Counting

It's hard to believe Brady has made it over a full month without a single seizure. If some good has to come out of this whole Epilepsy issue, it is that the world looks like a whole new place if you are lucky enough to begin living seizure-free.

Brady is sleeping through the night without the random twitching and jerking of his little body that had been waking him every few minutes. He sleeps in the guest room on a mattress on the floor. Classy, I know. It doesn't hurt if he rolls off the bed in his sleep so his little make-shift bedroom works for now. Brady loves that room for some reason and refuses to sleep anywhere else. He goes right to sleep like a perfect angel, ALL BY HIMSELF, even though his parents tried to mess with his sleeping habits by cuddling him tightly for the past nine months. He usually waddles out to find me when the sun comes up.

We are all sleeping through the night on a regular basis and thankfully have our happy boy back. Milestones are popping up all over the place and Troy and I are feeling comfortable enough to have a babysitter come over on Friday night. Now that I think about it, Brady handled these past few months so much better than we did. He prefers to sleep alone now while we still can't turn off the video monitor. We will get there. Baby steps. Thank goodness for resilient little boys!

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.

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.

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.

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!

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.

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!

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 ;-)

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.

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.