Thursday, December 18, 2008
Monday, December 01, 2008
Monday, November 17, 2008
...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 :-)
Tuesday, November 04, 2008
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.
Friday, October 10, 2008
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.
Tuesday, September 23, 2008
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!
Sunday, August 17, 2008
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!
Monday, August 11, 2008
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!
Monday, August 04, 2008
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.
Friday, June 27, 2008
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.
Friday, June 20, 2008
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!
Friday, June 13, 2008
Wednesday, June 11, 2008
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.
Tuesday, June 10, 2008
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!
Wednesday, May 28, 2008
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.
Friday, May 16, 2008
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.
Tuesday, May 06, 2008
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!