For You, Grandma

Christmas Card Rejects...

It was so hard to choose...

Naughty or Nice?

We just decorated the house for Christmas and, for the first time, someone noticed there were shiny ornaments to be yanked from the tree. Brady has developed in leaps and bounds this past year. In the same year that he became both mobile and aware enough to harass the tree, he was also smart enough to wait until both of us left the room to have at it. He doesn't realize I have evidence...

Poor Frosty is still hanging by his ski boots because I get a kick out of seeing him like that every time I pass by the tree. Not only is Brady skilled enough to remove the ornaments, he's also smart and naughty enough to attempt hanging them back up before he gets in trouble. His fine motor skills won't yet allow him to hang them properly, instead he slams them into the branches hoping the ornament will stick. Thus, the Frosty yard sale.

Another new "no-no" at our house is tearing ALL of the pictures out of the PECS book over and over each day. I am so sick of hearing myself repeat the same lecture about how the "schedule book is not a toy - it's a very important book that tells Mom & Dad what Brady needs."

Do you see him looking at the book and scheming? I do. But he will wait until I leave the room to tear it apart! When I come back and give him "the look" he grabs all of the cards and tries to shove them all back into the book at once, like if he's fast enough his mom surely won't notice.

This naughty boy is getting so smart. Thankfully, there are some things that haven't changed...

...gotta love those crinkly eyes.

Just Because

Some pictures. Just because...

...this boy can't be bothered to hold up his own head while watching cartoons

...because I saw a dog wearing sunglasses the other day (only in Phoenix)

...because the other night my wildest dreams came true :-)

Green Light

I'm still not back in to the blogging swing of things. To say I have been a bit preoccupied is an understatement. Three weeks ago Troy and I met with a genetic counselor who looked over the tests that we took after we received Brady's diagnosis. As we suspected, although we were told at the time that everything looked fine and we were given the green light to have more children, there was an additional test which needed to take place to determine if either of our chromosomes carries a balanced translocation.

I am horrible at the waiting game. Waiting around while those vials of blood are sitting in some scientist's office is almost more than I can bear. In the mean time, life-altering decisions wait in the balance. I go about my usual day-to-day business but the thought is ALWAYS in the back of my mind. Luckily, we only had to wait a couple of weeks this time around. Brady's series of tests in 2006 each took 6 to 8 weeks for a total of almost six months in limbo. And if you did not have the pleasure of seeing me during that time, trust me when I tell you I did not handle those 6 months gracefully.

This morning I got the call. The real, official GREEN LIGHT. Everything looked fine! Fine! Why can't I figure out how to make big, colorful letters on blogger like everyone else?

So I thought I would share the good news... even though we have no near-term plans to give Brady a sibling. My anxiety over the tests is slightly ridiculous considering we have procrastinated this process for almost two years. I don't think I was emotionally ready until now to hear the results if the outcome was not the outcome I wanted to hear.

And I need some more time to ready myself for the possibility of more children. When we met with the counselor regarding potential possibilities and tests we quickly learned that the only thing the testing options provide is knowledge and the choice of terminating a pregnancy. This is not an option for us. Religious beliefs aside, it would be as if I were telling Brady that he shouldn't be here. And nothing could be further from the truth.

So if there is a next time, a next pregnancy, we will proceed no matter what.

Last summer a good friend of mine asked me if we would have more kids and I explained to her that we hadn't completed the tests to determine if Brady's syndrome would occur in future children. She looked at me innocently and asked, "You don't want another Brady?" Her question was so naive and full of love that I felt a bit guilty and responded defensively. I sputtered on about all the potential issues. I might not have enough time to devote to TWO children's therapy appointments, hospital stays, etc. And when Troy and I get too old to care for Brady, I would go through DOUBLE the agony of figuring out who would take care of him. And blah, blah, blah. Later I played out the conversation in my mind and realized I needed to have an attitude more similar to my friend's. While these issues are legimitate, they are life. Some things are difficult to bear, but with a little patience and an open heart, you start to see the person. Not the person with the disability. Not the boy with the seizures. Just the beautiful boy. Another Brady would be just fine with me. I have officially reached that place. I just want more time to enjoy him all to myself.

Tony Hawk Helmet

Fall is in the air and we are finally emerging from our summer hibernation. Since we live in Bizarro world we will be spending as much time outside as possible this winter. Brady has difficulty regulating his body temperature and this new addition to his wardrobe makes things even hotter…Brady’s physical therapist fitted him months ago for a specific helmet which had to be ordered through our insurance company. Thanks to a heap of red tape and bureaucracy, the helmet has never arrived, despite the fact that Troy ordered it in July. After Brady got, literally, a golf ball-sized lump on his head from a fall at school (one of many), I got very upset and angry with myself for not finding another helmet. Since it’s much easier to be angry at someone else, I blamed Troy. Not my finest moment. He rushed out and bought the Tony Hawk helmet.

A few nights later, I found him cutting up a tennis headband and hand-stitching it together. Troy will kill me for sharing this, but seriously... he hand-sewed this padding over the helmet’s clasp so it wouldn’t pinch or irritate Brady’s chin. I don’t know very many guys who would do something like this. So I am an even bigger turd than I previously thought for pointing my anger towards him. Check out his work...

Brady doesn't love wearing the helmet, but it’s allowing him so much more independence to cruise around without us hovering there to catch him.

He is walking really well these days. He cruises so fast and has a newfound confidence that, ironically, is making him more susceptible to falls. He does NOT like to hold hands and insists on doing everything his way. In fact, I think his little strut is turning into a full blown swagger.

Inspired by 100

It's been awhile. I have started countless posts about nothing and never finish them. However, I have recently been inspired back to blog-dom by a 100-item post which I will now forever refer to as the mother of all blog posts . Jenn's creative list reminded me of all I am thankful for and the fact that Brady's seizure counter hit 100 the other day.

100!

I have to admit that I check my own blog almost every day around 5:00 pm to watch the ticker roll over. I reached a point where I didn't think 10 days seizure free would be possible. I love being proven wrong. In fact, I have been proven wrong a lot lately by this one...



It took awhile but Brady now says "yeah" on a regular basis. He also makes a very dinstict "rmmm-rmmm-rmmmmmm" sound when he sees, hears, or thinks about cars, trucks, planes, school buses, etc. This boy was in heaven watching airport activity from his window seat a few weeks ago.




I have always had confidence that Brady would walk but I have been pretty skeptical on the whole speech issue. It's not that I'm trying to limit him in any way, but his numerous speech evaluations have been pretty tough to swallow so I have attempted to manage my own expectations for Brady in order to plan ahead appropriately. Either way there are a number of communication options out there, and currently we are working on three.


Sign - I love sign language. It's amazing what people can do with this tool and it has proven invaluable in Brady's life up to this point. Hands down, Signing Time is the best resource for babies and kids that we have come across. A recent press release on their website stated they will no longer be airing on PBS so fill up your DVRs, people. And if you have any interest in sign whatsoever, I would strongly recommend purchasing some of their products. The Signing Time folks have produced two more Baby Signing Time DVDs which are geared to babies in particular (and worked great for us as Brady's developmental delays put him in this category for longer than usual). I have been asked to review the new DVDs on our blog which will occur within the next week. Two posts in one month - stop the madness!

PECS - Picture Exchange Communication is new to us. We had to get on board because this is what Brady's pre-school class uses (along with some sign). Brady has learned to pick the appropriate picture and give it to his teacher in order to get something he wants. I though there was NO WAY this would work (even told his teacher this before school started) and, of course, Brady now struts into class each morning and grabs the card for circle time. This system is a lot work to implement so I will post more about it once we become more proficient at home.

Speech - we continue to work on speech through weekly speech therapy. It has been a tough, very slow process but Brady babbles a little more each month. I was reading through Nate's notes from the 1P36 conference in Boston and one of the speakers reminded parents to be patient and that speech may come later down the road. I hope this is the case. If not, we have the other options to fall back on.

We missed the 1P36 conference and I'm really grateful to the other families who have posted information so we can stay informed with what's going on. We are hoping to be there next year - the candidate cities are SLC & Indianapolis which are both closer options for us.

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!