I made a referral to ECI in Fort Worth in September 2011 because I was starting to get concerned about Little Sis' gross motor development (neck strength and arm movements at that point in time). I knew that the referral process would be take a long time so I wanted to refer early. It took several weeks to hear from them but eventually I did get an evaluation date in late October. Unfortunately they did not have a Physical Therapist or Occupation Therapist available that day so they were unable to determine with Little Sis needed any help. They did say that she qualified for some services in the meantime so they assigned a case manager and an Early Intervention Specialist. We were only able to see them both once though as they were very hard to schedule with. Also they weren't super helpful anyways. Neither of them had a background in physical development so mainly we just met to mark my chart and not to work with Little Sis.
When we moved to Lubbock though I put in to transfer her to the Lubbock district. Since then things have moved VERY quickly, and it has absolutely nothing to do with me working there but with the fact that this ECI office is run so much better. Well since Little Sis only had the case manager and Early Intervention Specialist in Fort Worth, that is who came to our house the first visit. Our Case Manager is AWESOME! She realized right away that we needed more help and heard both Ryan and I say that we wanted a physical development evaluation. Within 24 hours we had a date scheduled which would be in less than 5 days!
That evaluation was actually on Tuesday this past week. An Occupation Therapist named Cathy came over to the house to do an hour long evaluation of Little Sis' abilities and limitations. Cathy is an amazing therapist and was great with Little Sis and with talking to us. We love her!
Now here is where things get a little more hairy. Ryan and I had both expected some delay with Little Sis being she was in the NICU for so long and we realize that she is technically almost 9 months old, but developmentally she is only 6 1/2 so we were giving her some room to catch up. Still we both realized that she was not quite up to par with her adjusted age of 6 1/2 months either so we knew that she would probably qualify for therapy, we just weren't really prepared for the results that we got.
Little Sis is "significantly delayed" compared to other full term kids her age and "moderately delayed" compared to children the same age as her adjusted age. Also she has very atypical gross motor skills that are unusual for any age child. Specifically,
- she has very weak core muscles so when she sits she is too hunched and rather sits to far back in her hips. This causes her to spread her arms our wide and have a wide base with her legs to maintain balance. Also this causes her to be unable to lift her head and look at eye level or above when she is sitting. She also has poor control of her core muscles when being held at your hip so she also has outstretched legs and arms then too. Also this posture limits her lung capacity so she is short of breath and breaths faster than she should.
- She has weak muscles in her arms, legs, and chest so she is unable to lift her arms above her head, push against her arms or her legs. This means she is not pushing herself up while on her belly, not reaching for toys that are not immediately in front of her, and not bouncing up and down on her legs when you hold her standing up.
- She has very tight joints and rigid movements when you try and bend her knees, elbows, wrists, ankles. This means that when you try and pull her arms from her chest she is unable to relax enough to let you move her body freely. She is very tense and tight in her back and shoulders too causing her difficulty with lift her head and neck for the full range of motion.
- She is aversive to any and all weight bearing activities on her arms or legs. She actually just starts crying when we push on her arms to compress them sometimes.
This all means that sweet Little Sis is now getting therapy at least once a week and sometimes more for almost an hour. Plus because therapy is done in the home Ryan or I are always present meaning we can do the therapy all day long!
The activities that we were told to work on this week are as follows.
- Every three hours we are to put her on her belly and run our hand over her back in a particular pattern in order to train the neurological system in her spine and brain to think in a new way. It is to help her body realize that she has both an upper and lower half of her body and that she has a right and left side of her body.
- We are only allowed to present food, toys, or outstretched hands (pick her up) above her head. This means that if she wants the food or snack she must reach both arms high above her head in a coordinated movement to get the items. *This is one we have worked on probably 50 times today.
- We are to do weight bearing exercises several times a day. For now though she won't even tolerate ten seconds of being on her belly so instead we push on her arms and legs in a specific manner to make her body receive those same weight bearing messages without actually being on her belly. The only way I can explain these exercises is if you imagine standing with your back against a wall and putting your arm out to tell someone to stop (with your palm out), now imaging someone coming in front of you and pushing their hand on yours. While you keep your arms straight, they push you back into the wall. This puts weight on your wrist, elbow, and shoulder. The same can be done if you sitting on the floor with your legs straight in front of you.
- We are to monitor Little Sis' posture while she is on the floor and in different chairs around the house to make sure are giving her enough support to sit straight up and down and not hunched over.
Well, please feel free to call, text, or email any questions or thoughts you have. Thanks though for your prayers in advance!
