Physical and Occupational Therapy for Joubert – 6 months to 13 months

Learning to bear weight
on my legs!

My apologies in advance the for the lenght of the blog - I'm wrapping up 7 months of physical therapy and assessments all in one. Lots of people have been asking what Physical Therapy is like, how helpful it is, how Ethan has progressed. This blog will be really informational around what happens in Physical Therapy, and really getting to see an apples to apples comparison on how much Ethan improves every quarter from his first Physical Therapy assessment at almost 6 months old to his last one at 13 months. Enjoy!

Ethan began his first day of Physical Therapy  August 26^th, 2013 and his first day of Occupational Therapy 2 days later at South Coast Therapy in Cypress.  

What’s it like?

Let me prepare you for what Physical Therapy may be like if you go to a place like ours. It will be busy! It will be a fun, bright place filled with all kinds of amazing things for kids to walk across, jump on, run on, jump into, climb over, swing on, and so on. It’s covered in big pads, so kids can feel safe to try and try again. There are so many toys. There are mini obstacle courses. Stairs and slides. There are rooms with treadmills and bicycles. And there are so many kids! If you go the same time every week, you really get to delight in these other children’s successes as you watch them run for the first time, climb better than they did last week, complete an obstacle course for the first time. And trust me, it will be loud. It will be filled with laughter, with instruction, with tears (sometimes Ethan’s), and with parents chatting on about how well their child did between sessions… ok, that’s mostly me chatting – I can’t help it! J

Does Ethan like PT/OT?

Ball work is so much
fun!

Overall, honestly, I would not say it is his favorite thing in the world. It’s a lot of hard work and he is challenged quite a bit. Ethan, like his mother, doesn’t like to be forced into doing things. So even though some of the play he would otherwise find fine, when being forced to do it he gets a little crabby. I would say 50% of the time he enjoys it and finds the play time fun, and the other 50% though – he cries, fusses, refuses to play, etc.

We just keep working through it, trying new things, pushing through the tears. The important thing is not to get discouraged – if your baby needs PT or OT, they will get through the hard times. Over time some of the things that used to make him cry he now finds really fun… although some are definitely still not. Like tummy time. He hates tummy time!

Assessment 1: August 26, 2013 - almost 6 months old

They assessed Ethan doing the Alberta Infant Motor Skills (AIMS) assessment, meant for babies 0-18 months old. The AIMS is a measure of motor development for infants at risk for motor delay. The assessment consists of 58 items for which the PT or OT either marks the items as “Observed”.  There are four main categories and then different movements are grouped into each category.

Here were his scores:

• Prone (reaching, holding up head, crawling, etc.): 1 out of 21 possible movements
• Supine (Roll over, play with feet, etc.): 3 out of 9 possible movements
• Sit (Getting into sit position, putting out hand to prevent falling, twisting and reaching, etc): 2 out 12 possible movements
• Stand (standing up, cruising, walking, etc.): 1 out of 16 possible movements

On our fun swing!

Do the math - out of the 58 possible items Ethan was “observed” as completing only 7 of them. 7 out of 58! Now, the test goes through 18 months and he was only almost 6 months at the time, so he would never have gotten all 58... but 7??!! He was below the 5th percentile for his age. While he was 6 months old at the time he was the equivalent of about a 2 month old. Yikes!!!

Ethan was given 4 goals to complete within 3 months time:

1. Sit up for at least 30 seconds
2. Lift his head up more than 45 degrees during tummy time
3. Roll from supine to prone with minimal assistance
4. Bear weight through his legs for 30 second

Occupational Therapy

The Occupational Therapy assessment was part of the AIMS assessment above. If you remember from a previous post, Ethan was 90% delayed in fine motor skills based on the Stramski assessment. At 5 months old he was the equivalent of a 1 month old. This would not do! Ethan was given 4 OT goals as well to complete in 3 months:

1. Reach across his midline and grasp a block, passing it between both hands
2. Grasp a slow moving object with 75% success rate
3. Bang two objects together
4. Feed himself puffs using his fingers

I love goals!

Assessment 2: November 1, 2013 - 8 months

Physical Therapy New Scores:

• Prone: 6 out of 21 possible movements – 5 point improvement
• Supine: 7 out of 9 possible movements – 4 point improvement
• Sit: 4 out 12 possible movements – 2 point improvement 
• Stand: 1 out of 16 possible movements – no improvement :-(

I love playing with my
 beads!

He went from being able to complete 7 of the 58 items to 18! He more than doubled his abilities. Beaming, proud mom! At 8 months old this still put him at the equivalent of a 4.5 month old and still below the 5th percentile.  However, he had met 3 out of his 4 goals! The only one he really couldn’t do was to bear weight in his legs… he flat out refused to do it. I knew my mission!

New Goals:
1. Sit independently for 2+ minutes while manipulating a toy
2. Protect himself from falling by extending his arm
3. Roll from supine to prone with no assistance
4. Be able to be on all 4 fours for at least 30 seconds
5. Bear weight through his legs for at least 30 seconds

As for Occupational Therapy
He made significant progress towards each of his goals. The two goals he fell a little short on were reaching across his midline for a toy, and grasping a slow moving object. This last one is especially hard because of the OMA. Children with OMA can’t track moving objects well – so it had to be moving really slow. He only had one additional Goal:
1. Pull pegs from a board

3^rd Assessment (last one to date): April 8, 2014 - 13 months old

There was a bit of a time lag for this one since our insurance restarted in January the need to assess and request additional PT was not needed until April.

I’m going to do this in reverse now – Occupation Therapy:

He graduated! In January of 2014 it was agreed upon by both parties that Ethan had met all of his goals. He was going great – picking things up, banging them together, feeding himself, opening/closing toys, reaching for toys. Great job my little man!

Physical Therapy – New Scores:

• Prone: 10 out of 21 possible movements – 4 point improvement
• Supine: 9 out of 9 possible movements – 2 point improvement
• Sit: 9 out 12 possible movements – 5 point improvement
• Stand: 3 out of 16 possible movements – 2 point improvement

The ball pit!!

He now totaled 31 points! From 7 points to 31 points in 7 months… I’ll take it! He is now rated a 7.5 month old – he seems to trail about half his age. Really it comes down to him detesting tummy time. If we could only get him to tolerate it and build upon it we’d finally break the 5 ^th percentile. Oh well – he may just end up walking first and crawling later. He did meet 3 of his 5 goals completely – and 2 he met partially: protecting himself from falling and getting on his hands and knees for 30 seconds (he could only do this for 10).

Ethan can do other things not necessarily called out in the report, like pulling himself up to stand and walking with minimal assistance using a weighted toy push cart.

So What's Next?

Well – as you can see below we have a ton of work to do, so we upped his physical therapy to twice a week. Check out Ethan’s new goals for July…

1. When seating protect himself from falling
2. Independently get on all fours and crawl up foam stairs
3. Independently transition from laying prone to sitting up
4. Walk 10 feet by himself pushing the weighted toy cart
5. Cruise 2 feet along a table
6. Demonstrate independent floor mobility – rolling, combat crawling, or scooting

We have a lot of work to do - Wish us luck!!