Monday, October 26, 2009

You've Come a Long Way Baby!

Thursday we celebrated Brett's 1-year anniversary in therapy.

Brett has Cerebral Palsy and P-ACC (the part of the brain that bridges the left to the right is too thin). He is an inspiration to everyone and though Tate and I come from families of hard workers, I have never seen anyone work as hard as our little boy.
I remember his original evaluations for therapy like it was yesterday. He was so tiny and so uncomfortable still suffering from severe reflux. He was very fussy and I remember him laying on a blanket on the floor in a "C" arching from his reflux and crying. I recall the therapists saying "Is he like this a lot?" I'm not sure they believed me when I said 'Yes, most of the time."
As he began therapy there were many sessions where the therapists just held him while he cried and did some minor stretching. At 5 months he evaluated at the level of a newborn with very few skills, not responding to voices, people or objects.
One year later he has made miraculous progress!
One of the biggest things is that he is happy! Me, Tate and all our family members used to wonder if he would always cry most of the day. We tried every trick - rocking, driving, swinging, the dryer, sitting him up after eating - you name it - none of it worked very well. But today Brett smiles easily and is even laughing! His happiest moments seem to be when he is interacting with his brothers Jackson & Peyton. He loves music and lights. He loves Elmo.
Brett can now sit for an average of 15-30 seconds without assistance. He can roll from tummy to back and back to tummy (although not yet consecutively). He can reach for objects, hold them and even bring them to his mouth. He can say mama and occasionally dada, we swear he has said Hi and Elmo a few times too!
He once would take an hour to eat several ounces of a bottle and was in discomfort most of that time. Now he is eating textured foods and when hungry can chug a bottle with no problem - he's even working on drinking from a sippy cup!
We take for granted how easy it is for us to sit up, walk, take a bite of food, but all this progress was won through hard work and God's hand. It has been a long journey that will be ongoing.
Brett has physical therapy twice a week, occupational therapy twice a week and feeding/speech therapy twice a month. He will now be increasing and adding feeding/speech once a week and developmental therapy once a week. So will be in therapy 5-6 hours a week - plus all the "homework" throughout the week.
Brett has been to more doctors in his short life than I have in all my years. While it seems every doctor tells you to see another doctor we are starting to piece some things together and continue to help him. In addition to a pediatrician Brett sees or has seen 2 neurologists, 2 geneticists, 2 GI docs, a pediatric developmental specialist, an endocrinologist, an opthamologist, a hearing specialist, a nutritionist, a breathing therapist, a sleep specialist and is being recommended for an ear, nose, throat evaluation.
As Brett continues on this journey we ask for prayers for him for continued healing, strength, tolerance and endurance, for his therapists for wisdom and support, for his family for understanding, knowledge and patience and we ask for prayers that the state will release the funds needed to get Brett a chair and bath seat.
Here are some pictures & info. on some of what Brett is up to in therapy and daily:
Brett wears two special suits a Theratog and a Spio - they are very similar to a wet suit you would wear surfing - both provide support and sensory input to his muscles throughout the day. When they first put one on Brett I was VERY skeptical because it looked like pieces of felt held together by Velcro. By the end of that day his head and trunk control were noticeably better. He also recently received his leg braces also known as AFOs (ankle-foot orthosis). His legs were casted to create a perfect fit.
This was the first time Brett was able to put on shoes and bear weight to stand (with support of course) I included the first picture so you could see his feet but the second picture really captures his reaction - he was so proud and excited. Peyton (off camera in the first picture) was so excited too. Brett has spent so much time lying down or propped up to a sitting position. This was the first time we could really get a sense of how tall he is and it really shifted his look from baby to little boy!
Brett working on his sitting with Miss Marie his amazing physical therapist!
Brett recently received his Tadpole! It is a cool system that is made of parts similar to gymnastics mats. The pieces can be moved around and secured with Velcro to let him sit as well as work on different positions such as lying on his tummy, side etc. This was the first time he was in it and Jackson had skipped his nap and immediately went to the other side of the table with toys to play with Brett - SO sweet! Even though he is on the small side Brett has outgrown his Bumbo seat and bouncy chair which are designed for infants so until we received the Tadpole we had nowhere for him to sit on his own - he has spent a majority of his 18 months on someone's lap or lying on the floor. This is a God sent - it allows Brett a lot more comfort and independence and allows us the opportunity to set him down and interact with him face to face!
Miss Marie incorporates Jackson & Peyton into Brett's therapy all the time - great motivation!
Our little tough guy. This photo was taken the morning after his sleep study. He was hooked up to all kinds of equipment and it wasn't pretty and didn't go too well. The EEG portion includes electrodes attached to his head with a gummy substance. When he was done it was all stuck in his hair!

Monday, October 12, 2009

Fall Fun!

(L to R) Jackson, Caroline, Peyton, Sophie and Brett

Despite the cold weather we decided to bundle everyone up and head up to Michigan to continue a tradition of going to Ciderfest. We almost changed plans several times and thanks to Auntie Nancy for making the decision to bite the bullet and go - we all had a blast!
Tate stayed home to work on some projects, including a much needed light in the playroom (thanks honey it is awesome!). So me, the boys, Grammy, Auntie Nancy, Auntie Kerry, Auntie Amy, Uncle Jackie, Caroline and Sophie all went on a road trip. We've gone to this event for years in an area of Michigan my family took most of our summer vacations. It's always fun to return - we have some amazing memories there!
Our fall adventure started with breakfast together at the Apple House and was non-stop activity all day!
It was a day of many firsts some of which are documented below.
All three boys went through a haunted house with their Aunties - I hate haunted houses and knew if I took them I would flinch or jump and freak them out and they'd never want to do that again. Peyton shed a few tears, but got over it really quickly and Jackson & Brett seemed completely fine - obviously they take after their dad!
Here are some photos and commentary from their busy day!
Brett, Peyton and Jackson watching the cider presses
Jackson parked himself next to the bunnies at the petting zoo and kept saying hop, hop, hop!
Auntie Kerry and Peyton feeding a cow. Apparently the boys were ready for a snack because they decided to stuff their faces with the feed instead of the cow - so gross - but they ate it!
Brett and Auntie Nancy had a lot of laughs in the petting zoo barn. Here they are looking at some of the animals.
Auntie Kerry and Brett on a pony ride. Unfortunately he ended up with the bucking bronco of the bunch and had to cut the ride short.
Howdy Partner! Jackson loving his pony ride with Auntie Nancy
Me and Peyton on the pony. He kept saying no, down please, but once we got moving he loved it!
Caroline giving Jackson & Peyton some apple picking pointers.
Brett fell asleep before we made it to the orchards - Sophie fell asleep in the car so Grammy & Uncle Jackie hung back.
Peyton with a mouthful of apple - they ate apples the entire time we picked - mostly the rejects off the ground!
Jackson finally gets the hang of it and chooses an apple from the tree.

Sunday, October 11, 2009

Brett's First Shoes

Earlier this summer Jackson & Peyton got their first official pair of walking shoes. We held off with Brett until now! This coming week Brett will receive his leg braces (look for a post on this soon!) We waited until the braces were ready to get him shoes since he will be wearing them together.

Brett was so good and looked so grown up being measured and fitted and standing in his new kicks. He's holding off on wearing them until we know they will work with the braces, but it was such an exciting day! Their first walking shoes were a birthday gift from Grandma and Granddad - so a special thank you shout out!
Much like when Jackson & Peyton got their shoes we spent time hanging out at the mall. This time in addition to me and Grandma Auntie Rhonda came so we were able to get everyone out of the stroller for awhile.
Here are pictures of our fun day!
Brett standing proud in his new shoes!
Grandma with Brett & Auntie Rhonda with Peyton and Jackson
They all threw pennies in and made a wish. Brett didn't want to let go of his 2nd penny so it may end up in his piggy bank!
We watched the train, but didn't board. Maybe next time.
Grandma and Jackson show Brett the big Elmo! He was in a Christmas store which normally I would never set foot in during October, but they had Elmo, Big Bird and Cookie Monster with signs that said hug me! There was no getting around it :)

Thursday, October 8, 2009

Dance fever

The boys love to dance.

I sometimes call Wednesdays Dance Party Days because Auntie Kerry and Auntie Nancy hook up the ipod as soon as they walk in the door to watch the boys on Wednesdays while I am at work.
One of their first dance moves I think Peyton hijacked from his cousin Sophie. If you sing the Hokey Pokey she turns herself in a circle. We never taught that to the boys but one day Peyton started doing it and when it got laughter and attention Jackson joined in.
Brett loves when you clap his hands or move his arms and legs to the beat of a song.
So I captured this video of Jackson the other day. I've never seen him do this before and it is so funny. You can't really hear it on the video because one of Brett's toys is louder, but he is dancing to a song on a CD called Bear Tunes for Kids that Aunt Peggy brought for the boys when we were in Tennessee - they love it! (Thank you Aunt Peggy!!!)
P.S. That isn't Jackson fussing it's Peyton he wanted me to pick him up instead of videotaping!

video

Saturday, October 3, 2009

A Wheely Good Time

Some of the highlights of the boys' days revolve around modes of transportation. On any given day they will shout car and truck dozens of times as one drives past the house. They also love saying bus when the school buses drive by and anxiously await the spotting of the mail man every day - who is like a local celebrity to the boys. They have always loved their books about cars and trucks so when our park district hosted a Wheely Big truck event we signed the boys up.

They were kind of little for it and couldn't really climb into the big trucks and sit like the older kids, but that didn't stop them from having a good time. They got to touch all kinds of trucks, walk through an RV and school bus, interact with the mini police car and basically were allowed to run all over a parking lot without the usual rules!
Tate, Granddad and I also enjoyed touring the many trucks on display!
Here are some of the pictures from our fun day.
Peyton on the school bus - he likes it much better from the outside!
Daddy and Peyton get a closer look.
Brett and me hanging out on an earth mover
Jackson & Peyton sitting on a fire truck.
Granddad and Peyton heading to the firetruck.
Jackson checks out Peyton's hard hat.
Jackson looking good in his hard hat.