PT Update

Last Monday, Maddie's Early Intervention team met for the six month reevaluation. Because Maddie is still delayed despite making amazing progress, she will continue to receive weekly physical therapy. The case manager asked me what my concerns were for Maddie over the next six months. I explained that I feel confident with Maddie's abilities while Heidi, her PT, is working with her. However, during that hour we keep Amelia and James separate because they are so much quicker than Maddie and they frequently steal whatever toy we are trying to entice Maddie with. When Heidi leaves, Maddie is left to fend for herself. The three of them wrestle one another and fight for certain toys (or my cell phone). Maddie is almost always left crying as James or Amelia dominate.

The case manager suggested CBRS. If you are like me and have no clue what that is, here's a quick description from the CDSA:

Community Based Rehabilitative Services (CBRS) is developmental intervention uniquely designed to enhance cognitive, physical, behavioral, self-help, social-emotional, and language skills. This rehabilitative therapy for infants and toddlers is “play with a purpose.” CBRS is one service available to support children and families from birth to age three who have been determined eligible by the Children’s Developmental Services Agency (CDSA) for the North Carolina Infant Toddler Program. 

Maddie will now receive an hour of physical therapy every Monday, as well as an hour of play therapy on a different day. I don't really know what to expect, so I'll update after the first session (which will occur within the next three weeks).

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Today I asked Heidi for some more specific ideas to help Maddie strengthen both sides of her trunk. We have stopped making her wear the hiphelpers because they hinder her from pulling up to stand. They worked well to correct her form while crawling, but she now spends more time standing (with support) and cruising than she does crawling. 

Heidi's fun suggestion to help build bilateral strength was to make obstacle courses. She explained that anything that Maddie had to climb over would force her to use both sides of her trunk. She encouraged me to let Maddie crawl up the stairs and climb over pillows and couch cushions. We initially set up a course in the open part of the living room, but Maddie just crawled the long way around it. Our next course was narrowly between the couch and the coffee table. We put toys, a pacifier, and a sippy cup in between the pillows so Maddie would climb over them. She grew tired quickly, which is a sign that she's working hard!

After Heidi left I made a large obstacle course using the couch cushions in the hallway. Thank God we did not take the cushions off the couch while Heidi was there. I may have dissolved into a puddle of embarrassment if any other adult had witnessed what all was hiding in between the cushions. I vacuumed while the kids played in the hallway. This provided a lot of entertainment for them!

Once Jackson climbed on a cushion, James, Amelia, and Maddie joined forces!

I let the three climb the staircase to their room. Amelia does this regularly, mostly on accident because she is so fast. Maddie made it to the top all by herself. James refused to go beyond the first two stairs.

It looks like we'll be spending a good bit of time climbing the stairs and pillows this week.

PT Update: Hip Helpers

Most of the time I forget all about any concerns that Maddie may have cerebral palsy. She's made such amazing progress in physical therapy. Then I see James and Amelia crawling everywhere and pulling up, while Maddie can't seem to get her legs to cooperate. I showed this picture to the PT yesterday because I didn't know how to correct Maddie when she frequently gets stuck in this position.

I also shared that Maddie keeps resisting some of the new exercises when I try to keep her knees together in a crawling position. We talked about how Maddie practically does a split when she is trying to reach over and grab something.

The PT suggested Maddie wear Hip Helpers to try and correct her hypotonia. Hip Helpers are basically bicycyle shorts with the legs sewn together. She said another client was borrowing the pair that would fit Maddie, but we could make our own. She asked me if we had any leggings a size too big. I grabbed a pair out of the closet. Since we have dozens of leggings, I let the PT trim the leg hole. We put both of Maddie's legs through one leg hole. Maddie was immediately off balance and fell over.

The PT explained that Maddie has strengthened her leg muscles but her core remains weak. Without using her trunk she is not going to be able to crawl or walk. We are supposed to make Maddie wear our DIY Hip Helpers for 20-30 minutes a couple of times a day.

When Maddie is wearing her legging, she is having to relearn how to reach for objects in a seated position using her core muscles.

It's disheartening to feel like we're starting over despite all the progress she's made. I just want my baby girl to catch up with her siblings.

PT Update

Maddie is rocking physical therapy! I am so, so proud of the progress she has made in five short weeks. Maddie's physical therapist is contracted out through the county's CDSA. During the physical therapy session yesterday, members of Maddie's Early Intervention team came out to watch Maddie in action with the PT. We reassessed her Individal Family Service Plan.

The IFSP goals were created two months ago, on March 10. EI ensures that the goals are functional and will help Maddie gain independence. Our original goals were:

1. Maddie will feed herself by holding her bottle and picking up finger foods.
2. Maddie will tolerate tummy time for extended periods of time.

We were able to mark off both goals as ACHIEVED! (She still doesn't prefer being on her stomach, but because she is able to move around on her tummy and roll over, we can't force her to stay on her tummy any longer.) We had to revise the IFSP to include her new goal of moving throughout her environment independently. More specifically, we are working on helping Maddie transition from prone position (on her tummy) to sitting, and sitting to prone. 

Despite a rough start, our PT really is fabulous. She has acclimated to my obsessive picture taking habits. She'll even hold the pose to make sure I got video or pictures. And if it wasn't to her ideal standards, she'll say, "Wait. Do another one." She knows that I actually refer to the pictures to help me work with Maddie.

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Jesse and I try to work with Maddie three times a day for 20-30 minutes each time using the stretches I learn from the therapist. I work with her after breakfast and lunch; Jesse works with her after dinner.  Jackson knows when I roll the ball out that it is time for Maddie to "exercise".  Madeline loves the ball, but she is so good at the ball stretches that the PT told us to use the ball as a warm up and cool down. We have a lot more floor exercises to incorporate. The PT makes it look so easy but I am not very fluid with the movements.  

These are the series of stretches to encourage Maddie to move into a sitting position.

When she is in a prone position,

tuck her knees under,

roll her from knees to hip,

and wait for her to walk herself up with her hands

until she is sitting upright.

I'm not going to lie, I haven't even come close to mastering moving her from knee to hip in a natural motion. Neither has Jesse. Hopefully we'll figure it out before next week.

PT: Take Two

After last week, I had pretty low expectations for physical therapy this week. Maddie's social worker contacted me after the initial session to get my feedback. I was assured that this PT is highly recommended and was having a very atypical day. Still, I was skeptical.

Once again there was a mix-up on the time. Instead of being late, the PT was 20 minutes early. Jackson must have let her in while I hopped in the shower because I came downstairs wearing a bath robe and she was sitting on our couch!  Oh well...at least I wasn't naked. I guess I need to view PT appointment times as a window of time rather than set in stone. 

Despite a strange start, we had a very productive 75 minute session. I naively thought she would just toss Maddie on the ball, but it was so much more complex!  I felt like the PT's little pupil. She followed an "I do. We do. You do." model.  (Not that she used that language. That's just the teacher in me talking.)  She would do different stretches or positions with Maddie, then explain why it was helpful. Then she would have me do the exercises with her hands on top of mine or assist me in balancing the ball. Finally, she let go so I could do it by myself and give me feedback. I asked if I could take pictures to reference for later use. 

Here are some of the things I learned to help Maddie practice each day:

• With my thumbs on her thighs, I can support Maddie in a seated position on the ball.  Keeping her belly button straight and utilizing the movement of the ball, I can rock her from side to side and front to back. This helps stabilize her core. The PT said that even if it feels like Maddie's falling over and losing control, let her feel that movement to help trigger her reflexes. It's also good to bounce the ball the entire time to help loosen her joints and soothe her.  (I haven't mastered rocking and bouncing at the same time yet.)

• Another exercise that Maddie did really well with is to simply put the ball a few inches from the couch (or another person) and roll it towards her. The point is to have Maddie apply weight on it with her hands. This helps her open her hands rather than keep them in her usual clenched fists because she likes to try and grab the ball and push on it.

• Of course we spent a fair amount of time doing tummy time on the ball.  It provided great support for her because she was on eye level with me without me trying to lay down on the floor. I could talk and sing to her more easily. The other great thing about tummy time using the ball is I can adjust the level of difficulty by working with or against gravity. When she got tired the PT just rolled the ball backward so she was almost in a standing position. She also bounced and rocked the ball, forcing Maddie to continuously stabilize her core.

• Another exercise that was exciting to see was supporting Maddie on a hands and knees position on the ball. The PT said that even if she gets tired and rests her head on the ball, it's still important to activate her leg muscles and get her comfortable in that position.

• We also did some floor exercises. One thing that was interesting that I had never noticed before was that Maddie doesn't twist her trunk to get something. If she is sitting up, she'll lean forward or to her side, but she doesn't turn to pick up a toy. If a toy is out of her immediate reach, she gives up. She should be supporting herself on one arm and rotating to use her other arm to pick it up. This is the same motion that will help her roll from back to stomach, which she is currently unable to do.  And if she can't roll from back to stomach and pull up, she's never going to crawl. We did several side stretches and helped her twist. 

As the PT was getting ready to leave, she let me know that she has Tuesdays at 11:30 available. I don't know what changed in her schedule from last week, but I'll take it!  I went to Target and bought an exercise ball a few hours after she left and have already begun working with Maddie. I'm feeling very optimistic about the progress we can make with our sweet Madeline.

Maddie's PT: First Impressions

Maddie had her first session of physical therapy at home on Thursday.  Based on that one session, I'm highly unimpressed.  Here's why:

• When the PT called to schedule the appointment, she asked if noon would work.  I asked how long the session would last and I clearly stated I had to leave by 12:45 to pick up my son from preschool. She promised to come at 11:45 a.m. just to be safe.  She arrived at my house at 12:20 on Thursday.
• By the time the PT arrived, Maddie was getting hungry again and James and Amelia were beginning to wake from their nap.  Maddie had already been playing on the floor and sitting up before she arrived, so she was over floor time.
• The PT continued to say, "Well, when she's in a better mood we can try..."  Newsflash, Maddie HATES tummy time and will never be in a good mood when you put her on her stomach. We're going to have to try things in short intervals.
• The advice I was given to increase Maddie's endurance during tummy time was to use a boppy, rolled up towel, or lay her on my chest.  Thanks for those tips. Google told me to do that six months ago.  It's not working.  That's why we hired a physical therapist!
• When I asked what our permanent schedule would be, the PT complained that she added five new clients this week and they all requested services on Tuesday morning. We selected this PT based on her availability on Tue/Thu. morning, but wound up with the next session on a Wednesday, and nothing the following week.   

Let's hope next week proves to be a more positive experience.