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!

Another Exciting Day...

It's another exciting day in the Hypes' household today! Now that school is wrapped up for me (Jenni), I am able to sleep in... well, at least until my internal alarm clock wakes me up at 6:30am... and I can work around the house for a couple of hours before our precious little drop of sunshine decides to wake up and start jumping in her bed. I'm waiting for the day when she can hurdle the crib railing. I fear it's not too far away.

- - - - - -
Once we're up and moving, we typically get a request for milk and breakfast in the form of sign language. If you remember, Emily picked up on the "milk" and "more" signs right off the bat about a year ago and she loves to put them to use. Most of the time we go with a lazy breakfast which involves walking around the living room with a sippy cup full of milk and a bowl or baggie of dry Cheerios (or occasionally Honeycombs). We've been practicing carrying the bowl with two hands, but nearly ever day we forget and spill dry cereal all over the carpet and nearly every we practice picking cereal up off the floor and putting it back in the bowl. We like to think of it as "occupational therapy" or a lesson in patience for Mommy. You would think that some day I would be smart enough to remember to strap her into her booster seat, wouldn't ya?

After breakfast, we go to work... ie. we get all the toys out of our toybox and go from one to the next, to the next, to the next. At some point before lunch we still take a nap and sometimes those naps actually last up to 2 hours!

Lunch these days usually consists of meat/protein (chipped ham, corn dogs, fish sticks, peanut butter sandwich, or chicken if we're lucky), a vegetable (usually peas, corn, mashed potatoes, lima beans or the occasional french fry or smiley fry when we're out to eat), or fruit (applesauce, mandarin oranges, bananas, peaches, apples, or strawberries) and of course milk. Sometimes, if we're lucky, we might even sneak in a cookie if we were good and ate most of our lunch.

After lunch, we usually repeat the after breakfast routine. Sometimes we throw in a video. It seems that Baby Einstein stuff with sign language and Elmo's World are the favorites right now. Em also seems to enjoy the Little Einstein shows on TV which is an animated series that has a lot of music and interaction with it.

Emily still takes an afternoon nap and they tend to run from 45 min. to 2 hours as well. She's usually awake by supper time and we tend to repeat our lunch menu as options. She still doesn't like pizza... bummer... and has convinced herself that she doesn't like chicken so much any more. She usually like bread but seems to get tired of it after a couple of bites.

After supper we usually play as a family, read books, wrestle or play a fun game (usually Mommy hides around the corner and jumps out to scare the begeebees out of Emily... and she gets some pretty good belly laughs out of it.) Lately, I've started giving pony and piggy back rides around the house and those seems to be pretty entertaining as well.

Bathtime comes around about every other day unless it's a dirty play day and is a big hit. Emily loves to round up her foam letters from her floor puzzle as well as any other Mommy-approved bath toys and plops them in the tub. She pushes Mommy's footstool into the bathroom so I have something to sit on by the tub and the stripping commences... hers, NOT mine! She loves splashing and laying down in the tub and even though she acts all freaked out when I rinse her hair she signs "more" when I'm all done.

When it's time to get out of the tub, we wrap her up in her towel and take our "baby burrito" to her bedroom to find some pajamas. We play a bit and put toys away until the munchkin's hair is dry and then it's on to bed. Our bedtime routine usually consists of giving Daddy a kiss and/or a hug and playing "flutter" with Daddy. Flutter consists of putting your hand over Daddy's long eyelashes and letting him tickle your hand with them, then they swap and Daddy's hand goes over Em's long eyelashes so his hand gets tickled. Occasionally I get let in on the fun but Daddy's really the better player!

Bedtime's usually around 8:30 and Em still settles down pretty quickly. Every now and then we wait a little too long and pass the bewitching hour... but even then she only cries for about 15 minutes or so.

Saturday, June 14, 2008

Grandma's Final Update

I was able to visit Grandma on Thursday afternoon and spent some time sitting with her. They had given her a light dose of morphine to help her out and it seemed to help her breathing.

Tom and I received a call late yesterday morning on our way up from the hospital's parking garage that Grandma had just passed away. She was with family and they were praying for her and reading some of her favorite scriptures to her.

She will be greatly missed but we have no doubts that she has joined Grandpa in Heaven and is running through the fields like a little girl again. I can only imagine what Heaven might be like... but it's a better place now that G'ma's there! I'm gonna miss her, but I celebrate this next phase of her life!

Monday, June 09, 2008

(Great) Grandma Update

Grandma is still in the ICU and they are starting to wean her off of her ventilator. Today they had her off the ventilator for about 2 - 2 1/2 hours and she did ok. It is picking up when she can't. They are also not sedating her as heavily as she had been so today she was able to follow people around the room with her eyes and seems to recognize her family. She had movement in her right foot yesterday and then today had a little movement in her right knee.

My mom, her brothers, and their spouses have been taking turns going down to stay with Grandma during visiting hours. A few from my generation have been in to see her as well. I've heard the staff are tightening up a bit on visitors to her room because there are just so many of us. They are only allowing 2 visitors at a time in her room and the others have to wait in the waiting room, not in the hallway. Apparently, some of the other patients (or families) have complained because there were so many people there to see her. Sorry about that! She just has a big family!

I'll try to keep you posted when I learn something new. Please keep the prayers coming for Grandma and her kids.

The Many Faces of Em

Emily was being especially animated the other day at lunch. I couldn't pass up the opportunity to snap a few pictures. She was looking at these this afternoon with me and she thought they were pretty funny. (The first one is one of my all-time favorites I think.)

Mmmmm-wha! G'Night Y'All!

Pictures from the past week

We've had some fun times over the past week. Here's a quick snapshot to share with you!

If you remember some of our past entries, you'll recall that Emily has tried mashed potatoes and cake icing for styling her hair. This week she decided to try bananas.


Post-Banana Mohawk

Playing footsie with big brother, Ryan.

Sampling one of Great Grandma's cookies.

Have you seen the video of how she moves her crib?
I'm still trying to figure this one out... it was WAY out from the wall.

Uh-oh. Look, Mom, someone scribbled on my table!

We had a yard sale this weekend and our friend,
"Aunt" Mary came to visit and hang out for a while.

"Uncle" Dave came along, too!

The Brandy Winfield Memorial Poker Run came
through town during our yard sale. Em had a blast
waving and blowing kisses to all the riders that
passed through and parked along our street.

How'd She Do That?

We've been wondering how Em's bed ends up so far away from the wall during naps and over night. I'd always assumed Emily was jumped in her crib, scooting it along as she went. Today she showed me otherwise.

What is THAT?!?

I've entered a new phase in toddlerhood. Emily has been preparing me for it all along and I didn't even realize it!

Emily doesn't say a whole lot these days but something she very clearly says about every 10 minutes is, "What IS that?" Today it took on a while new twist!

I was setting her booster seat up at lunch this afternoon and noticed "something" on the chair it usually sits on. The first thing that popped in my head was, "What is THAT?!?!?" And, to quote a line from the new movie "Baby Mama", I thought to myself, "Is that poop or is that chocolate?" I opted not to carry out the 2nd part of the scene. (She licked her son's finger and made a comment about it being chocolate.... Yeah, eww!) I grabbed a rag to clean up the aforementioned "something" and learned quickly that it wasn't going anywhere. I ended up having to use a plastic knife to chisel it off. After a little investigating -- no, I didn't taste it! -- I determined the questionable substance to be petrified chocolate pudding.

A short while later, Em was snacking on a cracker and had dropped some pieces on the floor. I asked her to pick the pieces up and not only did she pick them up and eat them but she also snatched up a piece of our cat's toenail that had snagged on the carpet and stuck IT in her mouth. She quickly realized it wasn't a cracker and spit it out. Yeah, that's just gross. I'm either going to have to have Spencer totally declawed now or put mosquito netting over Emily's mouth so she can't eat weird stuff. What is THAT all about? My kid wouldn't eat macaroni today but she'll stick a cat's toenail in her mouth???

What is THAT?!?!?

Sunday, June 08, 2008

Emily's Great Grandma

Just a quick post tonight...

Many of you that are following Emily's blog are family or close friends. I just wanted to post a quick update to let you know that Emily's Great Grandma Isler (Jenni's grandma) had a stroke on Saturday and is currently in the ICU at Riverside Hospital. The stroke has affected her right side and she is not able to speak or move her right side. She is currently on a ventilator and her sons and daughter are taking turns staying with her.

We appreciate your prayers and I'll keep you updated!

On a fun note, when we mention Great Grandma's name to Emily she responds with, "Mmmm!" Why? Well, even though Great Grandma is over 90 years old and still lives at home by herself, she continues to bake cookies to share with people that come over to visit.... including her great granddaughter, Emily. When Emily goes over to visit, she gathers up Great Grandma's teddy bear collection and piles them on Great Grandma with love and then she moseys over to the counter where the cookies are stored and hints that she just might like to sample some of Great Grandma's latest accomplishments.

We love you Great Grandma... Get Well Soon!
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