Monday, June 23, 2008

Another Exciting Day (cont.)...

Today, we essentially followed our regular routine (in the previous entry) but we took a trip to the pediatrician for Em's 2-year check-up. It seems we've been having a lot of appointments lately. Here's a run down of what's going on with Em's PT, speech and other developmental areas and what some of the recommendations are that we've been given.

Help Me Grow (HMG) - This is the early intervention service that is provide through Marion County. HMG has provided us with a wonderful social worker named Nikki who helps us with all the paperwork involved in getting the services for Emily that she needs. Nikki visits every couple of months and coordinates Em's evaluations/assessments that happen about every 6 months. The evaluations/assessments then determine if Em needs referred to receive other services. In most counties, HMG also provides or pays for the early intervention services that their cases require. However, in Marion County, we have been extra blessed to have those services stripped away. (Did you detect the sarcasm there?) Marion County's HMG program and only refer us for other services but they can't help provide them. My understanding is that this is because Marion County's MRDD levy failed and these were some of the cuts that were made. VOTE YES for MRDD!

Because these early intervention services aren't provided by HMG at this time or another agency in Marion County, and because we love our daughter enough to get the services she needs, we now get the opportunity to pay a $20 insurance co-pay for every treatment and we are limited by our insurance to 20 sessions per year even though it has been recommended that Em receive ongoing PT once a week until she no longer needs treatment. This is no fault of HMG, from everything we've seen they are doing absolutely everything they can within their power.

Physical Therapy (PT) - Emily still receives physical therapy once a week and while it's mostly play-based due to her age, we are learning things to do with her while we are at home to keep her stretched out. She still has high muscle tone but it's nowhere near as tight as it was when we first brought her home. At that time, her trunk was very tight, she still acted like she had a stiff neck and it was pretty tough to change her diaper because she wasn't very limber. The fun part with PT is that every time Em has a growth spurt her muscles can't keep up with the bone growth and we backtrack. During PT, Em gets to play on a slide and we focus on alternating her feet as we go up the steps (she tends to step up with her left foot all the time) and she has been working on sitting down at the top of the slide and getting her balance while there. (Imagine keeping your head above your feet as you try to sit down on a narrow platform and don't have good balance or control.) During this process on the slide, Em is also learning how to maneuver her feet and legs around when she's sitting on them. Sometimes she just gets "stuck" and needs a little help getting the muscle control accomplished to get the job done.

At PT, we also sit on the floor with Em straddling our leg and we help her stretch her leg muscles and trunk. We do this by putting a shape sorter to one side and the shapes on the other side and let her adjust her balance while we help her hold her feet flat on the floor. (Her feet are frequently in the tippy-toe position... this kid's gotta have strong calf muscles!) This past week she stood on a very soft, spongy pad and had to adjust as her feet and balance as she picked shapes up off the floor and put them in a container that was up pretty high. We do a lot of other activities at PT and at home but these are some of the bigger ones we're doing now.

Emily received a speech and language assessment a few weeks ago and it was recommended that she start receiving speech therapy once a week for a year. Again, our insurance will only cover 20 visits so we are seeking alternative funding for this. (No, we're not going to rob a bank.) Em is now 25 mos. old but due to her premature birth and her 8 mos. spent in the baby house this age is adjusted for assessments. At the time, her adjusted age was probably about 21 mos. She was assessed with a comprehension (Receptive Language) of approx. 30 mos. and an Expressive Language (speech) development of approx. 11 mos. In other words, she thoroughly understands what's going on and what we're saying and is above average in that area, but she's about a year behind schedule on talking and expressing her needs verbally.

We were supposed to start speech therapy last week, but canceled it due to Grandma's service. We start tomorrow (Tues.) and I'm anxious to see what they do to help a 2-year old learn to use her words that she's been storing up.

In other Emily news, we have an appointment with Children's Hospital in a couple of months to have a physical medicine specialist check on Em. The team that we have working with Em right now believe there is a deeper reason for Em's delays. If there truly is a deeper cause, there's a chance this will qualify us for the alternative funding that I spoke about above. At this point, the team seems to be leaning toward a possibility of mild cerebral palsy and/or PVL (which CP is a symptom of). We may be having someone look more closely at the MRIs that Em had done last year. At that time, there were some concerns, but the signs weren't showing themselves as much as they are now. I'm praying that we find "something" so that we know what we're dealing with and how to best proceed from here on out. I've done a lot of reading about health issues with internationally adopted children and premature children and I'm firmly convinced that early intervention is key. The longer we spend on diagnoses, the longer we go without truly working on the problem.

We are surrounded by the wonderful teams at HMG, PT, Speech Therapy, and our pediatrician's office. We have great support from our online adoption community, our family and our friends. We thank you for your support and your prayers! Go team!

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