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!
posted by Jody @ 9:12 AM
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