Copies of old blog pages from when we were trying to figure out this whole hypotonia thing:
My name is Brinlee. I am a 3 ft tall crazy, fun-loving baby. There are so many people who love me that I asked my aunt- actually, she’s my mom’s cousin- but I call her Aunt Jen- anyway, I asked her to help me create a place to keep everyone up-to-date and informed about my diagnosis and progress.
I have been told I have hypotonia. This is sometimes called floppy baby syndrome. I cannot control the muscles in my body, and my development is somewhat delayed. The best page Jen found for a short description is by Elizabeth Mueller, and can be found here: http://www.lightlink.com/vulcan/benign/factsht.htm.
My neurologist diagnosed me with Encephalopathy. This big, scary word is an umbrella term that means my brainstem is not communicating with my body in a normal manner. It explains my delayed development, and other physical challenges. Jen has no pages to recommend, as the ones she looked at were real downers and had negative outlooks. At least the hypotonia pages said I might eventually out grow my delay. However, the Pedorthist (lady who made my orthotics) told her that was the diagnosis she had on file from the neurologist.
All I know is that I love to play. My favorite things are playing with the best doggie on the planet, Bella. I throw the ball for her, and she gives me puppy kisses. I love to push my shopping cart around, and often forget that I need to go slow enough for my feet to keep up with the rest of me. If there is music, my day is awesome! I love my toys that sing or play music for me. In the car, I will let you know talk radio is not acceptable, in fact, I would prefer classic rock. My favorite games are peek-a-boo and patty cake. My way of throwing it in the pan will have you on the floor laughing! I really love bath time. Actually anytime you can be in the water is good.
Life is good! I am a happy baby! My family is huge and diverse. And, they all love me more than anything… what more could a girl ask for?
We’ve been adjusting to the new routine. My day usually goes something like this:
7:30- 8 ish – I wake up
8 or so- I have breakfast- 1/4 cup baby oatmeal mixed with 1/4 cup of milk and 1/4 cup oatmeal. I drink a cup of milk with breakfast.
I get do my therapy and get dressed after breakfast. Then I drag out all of my toys and play in between diaper changes. If the weather is nice, I would prefer to be outside, please!
I like a mid morning snack of some cheerios and banana. This is usually when Jen is pushy about my sign language and putting the cheerios on the side of my mouth. We trade-off, she puts one in and then I get to pick up the next one off of my tray and eat it all by myself. I drink 1/2 juice & 1/2 water with my snack.
Around 11:30 I have lunch. I like peanut butter & jelly on one slice of bread cut into tiny baby size finger sandwiches. They are almost as cute as I am. I have milk with my lunch.
After lunch, it is nap time! This is when I am really unpredictable to Jen. I will sleep anywhere from 45 min to 2 hours. I like to keep her guessing
When I wake up from my nap, I play until it is time for my afternoon snack. If McKenzie is coming over after school, I wait for her… I like yogurt and something I can pick up from my tray all by myself.
Dinner is usually around 6. My Nana likes to feed me when she gets home from work. This is when I try lots of new stuff like using my spoon by myself, biting crackers and other fun big girl stuff. I drink more juice or water with dinner.
I like my baths, so Jen tries to give me plenty of time to play and practice sitting crisscross applesauce. I get into my pajamas after my bath.
Around 7:30 Jen gives me my last milk bottle for the day. I get my snuggles and we read a book if I will sit still. Depending on how long my nap was, what else is going on, and how cranky I am (I like to hit people when I get tired) I go night night between 8 & 9.
I started my PT with Miss Gail from Green Apple Therapy December 19th. Mostly, it feels like playtime, but sometimes she wants me to do things I am not at all interested in! Miss Gail helped my cousin Robert walk again when he was in a car accident, and she is my other cousin’s godmother. I am a lucky girl that she could fit me into her schedule!
Jen does joint approximation with me twice a day, and we play on my therapy ball afterwards. This is to help my joints become aware of where they are in the universe. She sings and tries to make it fun for me. Sometimes I chant along with my sweet baby nonsense. Jen says when I visit my mommy and other family members, I should not worry about missing this part of my therapy…
Compression through a joint stimulate joint receptors Facilitate alpha motor neuron Facilitate stability. Uses: Promote stabilization Facilitate weight bearing and contraction of postural muscles Facilitate upright reactions Resist some component of motion. E.g., use approximation at the end of shoulder flexion to resist scapula elevation (11) (http://www.authorstream.com/Presentation/dr_vishal_bpt-213121-pnf-neuro-physiotherapy-education-ppt-powerpoint/).
I like to sit with my legs in a “w.” Apparently, this is not a good thing. It can make my hips funky in the future. Jen either scooches my knees together to so I am properly kneeling, or she tries to get me to sit crisscross applesauce. I do not care for this much. Miss Gail says it’s because my muscles are tight and it is uncomfortable. You’d think Jen would figure that out by my squeaks, squeals and the fact that I do not stay in this position long. This is something everyone in my family is supposed to torture me with. Oh Joy!
Miss Gail reminded Jen that I have low tone. I can not control the muscles in my body the way most people can. If you see me crawling more than trying to walk, especially if I am hanging my head down- that is a cue that I am super tired and ready for some snuggle time or it’s getting very close to time for a nap or night night.
December 12th, Miss Gail did my physical therapy evaluation. The following are Jen’s notes:
Tibial torsion – leg rotates out- http://www.childrenshospital.org/az/Site1027/mainpageS1027P0.html
Gross motor skills behind, but not bad
Need to work on posture stability & core strengthening
Proprioception (pron.: /ˌproʊpri.ɵˈsɛpʃən/ PRO-pree-o-SEP-shən), from Latin proprius, meaning “one’s own”, “individual” and perception, is the sense of the relative position of neighbouring parts of the body and strength of effort being employed in movement.– (Gail said the word, and Jen had to wiki the definition) http://en.wikipedia.org/wiki/Proprioception
Toe standing reinforces extension and gives me the stability to do things with both of my hands
Functional ability at 12 months scattered to age appropriate
Missing quality of control and movement
Therapy will focus on core strength and stability
I started with Miss Maggie at Green Apple Therapy on the 19th of December. These are the goals she has for me:
- Drinking from an open cup
- Naming pictures
- Labeling objects
- Following one step directions
- Lateral Bite
Ways my family can help:
- Try to put food on one side of my mouth
- Read to me
- Ask me to sign for eating and drinking