THIS is cool.

We've gained some new followers in the past month or so and I feel it might be helpful to give a little background to explain what's so cool about this post.

The New and Improved Hypes Family
(minus big brother, Ryan)

Our daughter, Emily (or "Sparkles" as she likes to refer to herself occasionally), was born 10 weeks premature in Uralsk, Kazakhstan.   I didn't get to formally introduce myself to her as "Mom" until she was 8 months old and we traveled to Kazakhstan to adopt her.  

We lived in Kaz for 4 weeks while we bonded with her and went through the official adoption process.  In February of 2007, Emily came home with us to Ohio.

In the years since, Emily has grown to be your ordinary 4-year old girl that happens to have a mild case of Spastic Diplegic Cerebral Palsy.  As a result, she has high/tight muscle tone in her calves and ankles and also in her hips and waist. She goes to physical therapy twice a week to help with this and we do stretching exercises on a regular basis now.  Last year, Em received botox injections in both calves to help weaken the muscles so her other muscles become more developed.  Along with those, she also wore AFOs on both legs during the day and a DAFO on her left leg at night.  (These are leg braces made of molded plastic that basically fit like a boot.) 

Above is a sample of the braces she wore during the day.

Like any kid, Em loved to play outside on the swings and slides at an early age.  (Still does!)  Now, with that being said, there are a couple of differences between Em playing on a swingset and most other kids playing on a swingset.  Em is a tiptoe walker when she's not wearing her braces.  Standing on your tiptoes all the time make it very easy to trip and/or get knocked down.  With her tight trunk muscles, it was difficult for her to sit at anything close to a 90° angle... which also made it very difficult for her to sit safely in a normal swing.  :-(   

We kept her in baby swings for as long as we could possibly cram those long legs of hers down through the leg holes.  We also hovered around her when she climbed the ladders to the slides because it didn't take much for her to get distracted and lose her balance and fall backwards.

Finally, when she was about 3 1/2, the day came when we felt she was gaining a little more independence and would be ready to start trying to tackle a small playset on her own... 

Can you feel the excitement?

It's been a little over a year since that video and she's doing great!  We don't have to hover any more unless she's going up a really tall slide or attempting to traverse some sort of obstacle course that some of the doohickeys have on them.  Em is no longer getting botox injections this year, she doesn't have to wear AFO braces during the day but still wears DAFO braces on both legs at night.  She loves running and playing and sliding AND SWINGING.

And now, something related but, slightly off topic:

Why is that swinging part so important?  That part is so important because of the next video I want to share with you.  Do you remember the freedom you felt as a kid flying through the air on a swing?  Do you remember how fast and how high you could go?  Do you remember your hair blowing back and forth in the breeze and your stomach leaping a bit when you'd reach the really high part?  Yeah?  Ok, now, imagine you're confined to a wheelchair with cerebral palsy or for any other number of reasons.  What are the changes that you're ever going to get to sit in a swing and experience that thrill? 

Look what I ran across today.  Wouldn't it be awesome if every town in America had one of these? 

Botox Follow-up

(NOTE: there are 2 new posts today... there's another one right after this that covers the last couple of months and has lots of pictures!)

Last month, on St. Patty's Day nonetheless, Emily received another series of botox injections in her calves. For those of you new to the blog, Emily has been getting these every 3 months for the past year or so. Emily is almost 4 years old and has cerebral palsy. Her version of cerebral palsy causes her to leg muscles to tighten up and she walks on her tiptoes as a result. The botox is used to weaken the tight muscles and she wears leg braces (DAFOs and AFOs) on her calves and feet to keep her from going up on her tiptoes and to help retrain her muscles. She also wears a similar brace that we call a "night brace" on her left leg. It is more padded and able to be adjusted so she can get more stretch in her heel cord while she sleeps and her leg is relaxed. There are pictures of these and a better description in this old post from last July.

Sooo... Em's been wearing her braces every day for the most part since the end of September '09.

We are always scheduled to go back to Children's Hospital 3 weeks after her botox injections because that is when the results will peak and we can see how well it's working. Our doctor was very excited by our last visit a few months ago and was very excited again today to see how well Em is doing.

As I've mentioned before, Emily's doctor is in a wheelchair and has an assist dog, named Travis. It works out great because at each visit, Emily gets to walk down the hall to the doctor's office to get Travis and then gets to take him for a walk down the hall a few times. She's more focused on the dog than working her runway walk so we get a better idea of how she's really walking when she's not thinking about it.

Today, I opted to let Em wear her dress shoes and bring her braces in a bag instead of having her wear them. She stayed flat-footed nearly the whole time and popped up on her toes only a little bit when she was excited to see Travis. When we took her shoes and socks off, it also looked like she was starting to use the muscles in her feet correctly.

Dr. Kaitz is happy with the results and has given us good news for the next several months. Emily has grown quite a bit since she was initially fitted for her braces and Dr. Kaitz is worried that they are starting to get tight on her. Instead of getting fitted for new braces right away, Dr. Kaitz would like us to stop using them for the next 3 months AND skip the next botox injection and see how she does. She feels that as long as we keep stretching and flexing Em's legs and ankles that we might not need shots or braces any more. She also mentioned that we need to make sure we're getting a really good stretch on her heel cords because she's starting to get the beginnings of a bunion on one foot which I believe she said is the result of an arch falling and a tight heel cord.

Only time will tell! When I asked about continuing PT twice a week, she smiled again said that was overkill and that we could drop back to once a week. We will check with our physical therapist for her opinion as well since she is also working on getting her whole body working smoothly together (trunk rotation, spinal mobility, shoulders, wrists, etc.)

Needless to say, we are really pumped about this news and Emily is pumped about no more shots! We're going to keep working hard and our hope is that in 3 months we still have the same, if not even better news.


(Don't forget... there's another post after this one... with pictures!)

Another Botox Follow-Up

We ventured down to Children's Hospital again yesterday afternoon for Emily's botox follow-up appointment and I am happy to say that we finally had a VERY encouraging visit with the doctor. This appointment was with our "new" doctor, Dr. K. We've usually had very good experiences with our visits to Children's but this is the first time that any of Em's doctors have been really pumped (almost giddy) at the progress she's seen.

Dr. K watched Em take her (Dr. K's) assistance dog, Travis, for a walk, we took the braces off, she flexed Em's feet/ankles and had her walk again. It was nice to finally see a doctor's face light up with excitement at how well the treatment was working. I was told that her left foot is finally within normal range and her right foot is better than normal range. Dr. K said that if we can stay on this track the future could look very good.

We also talked about a few other things like how to make the injection appointments a little more tolerable for Em and how to get a little more stretch in her hamstrings since she's not able to get a restful sleep with her knee immobilizer (knee brace) on.

We are going to try sticking to the regular AFO's (day braces) and adding the knee immobilizer at nap time and then having her wear her DAFO (night brace) at night time.

Emily has major issues with being confined (i.e., being held down for shots, getting caught in blankets while sleeping, getting hung up in shirts while getting dressed) and she immediately panics and starts fussing and screaming. Needless to say (but I'm going to say it anyway) I'm looking forward to being able to sleep a little better at night now that we don't have to wake up to her crying for us to take her knee brace off. (We've only been able to make it 1-2 hours any given night when we've tried to get her to wear it.)

Dr. K was thrilled with Em's progress and as a parent, it was great to hear Dr. K say that she loved ending her day with Em since she was so much fun and kept her laughing. Not all of her patients are so amiable. She said that just by observing Em she could tell that she's very intelligent and watching her made her want to adopt.

We left with a very good feeling... and then spent a little over 2 hours (during rush hour and snow/ice) making the 45 minute drive home.... but I digress. ;-)

Ok, folks (and that means you!) I've used enough "( )" (parentheses) and improper grammar today and my editor friends and family are ready to strangle me. Have a great day! (Bye!)

Surprise(s)!

Surprise #1: (Note - I just posted 3 entries tonight for this past week...)

I had to leave work a little early this afternoon to take Emily to an appointment at Children's Hospital. This was a simply brace follow-up and Tom had rearranged his day so he could go down to meet with our new doctor with us. We rushed home and collected everything we needed for the afternoon and while I was getting ready to head out the door I noticed my voicemail message light was blinking.

Surprise #2: A quick check of the message revealed that our doctor wasn't feeling well and left work earlier in the afternoon and we would have to reschedule our appointment. I called to reschedule the appointment for a few weeks out and we went ahead and picked Emily up early and headed out of town for a family evening out.

Surprise #3: A new wing has been added on to the mall that we like to visit and a Dave & Busters is included in that wing. I don't know that we've talked about it much on the blog, but Emily is very sensitive to loud noises. She can't stand vacuum cleaners, loud music, noisy toilets and air dryers, whistles, buzzers, car horns, loud mufflers or engines on cars/trucks, etc. so we were pretty sure she would freak out the minute we opened the door. We opened the door, stepped inside and paused for a moment to ask Emily if she thought it was too loud or if it she wanted to eat there. It didn't even phase her and she said she wanted to eat there. The meal was great and in the midst of a mid-meal potty break Em discovered there were lots of games on the way to the restroom!

To our surprise, Emily couldn't wait to finish her supper so she could show Daddy all the games that she found! Not only did she show him the games that we noticed on the fringe, but she walked through the entire game floor showing her Daddy all the blinking lights and noisy games... and Daddy helped her win a few game tickets to boot! It seems silly, but I was almost as proud tonight as I was when she started trying to take her first steps. We were still afraid of the scary automatic toilets tonight, but this feels like a giant step forward.

Just the Facts, Ma'am

Nothing really exciting has happened in the last week so I'm really struggling with what to write about today. The only thing "new" is that Emily worked up to wearing her braces all day (off at night) for about 3 days before she started limping. There were no red marks on her legs or feet and her toes look fine too. We gave her a break for a few days and when we tried putting regular shoes on her, she decided to limp then too! Tomorrow is a new day and we're going to attempt our Super Legs! again. (That's what we call them.)

Today's entry is just about facts. About Emily.

• As of today - 1,248 days old.
• Weight: 33.5 lbs (but feels more like 50!)
• Height: 39 inches (and that's on flat feet!)
• Not a big fan of bugs
• Loves ice cream
• Will pick a dress over play clothes nearly any day
• Likes to put mousse on her forehead every morning
• Adores hand-me-downs from her friends and cousins
• Has a daddy-inspired addiction to orange tic-tacs
• Has an obsession with birthdays and celebrates mine at least once a week
• Head-over-heels adores her big brother
• Still isn't potty-trained but tells me every day that she's working on it.
• Once told me her tummy was tired (what does that mean, anyway?)
• Pronounces Lucky Charms and Yucky Bombs
• Is a routine girl through and through
• Likes to put her hands up and say, "Weeee" as we go over train tracks and bridges.
• Moving up to wearing 4T and 5T but we actually have to make sure they're long enough (I never had that problem!)
• Shoe size is a 7 1/2 or an 11 1/2 wide... depending on the day.
• Favorite game: Hide & Seek (and hiding in the same spot again and again)
• Favorite drinks: milk and lemonade
• Favorite movie: Snow White
• Favorite books: God and Me, any Clifford the Big Red Dog books, The Way to Wyatt's House, Snow White
• Favorite songs: Twinkle, Twinkle Little Star and ABC Song
  

Brace Yourselves...

Okay, lame title. I know. But, come on. You knew this entry was coming!

Emily's braces were ready on Monday morning so Tom and I took Emily for her fitting. She did really well and was once again very brave. Mr. B was able to do his work and we walked out of there with 4 new pieces to add to Emily's wardrobe... 2 braces, a night brace and a knee immobilizer for night use. More pictures will come later, but I wanted to give you a quick sneak peak at the amazing difference in her walk and how quickly she has adapted to these things.

After work, we had a meeting with a new babysitter and her family. We went out to eat and then hit the shoe store to find a new pair of shoes that would fit over there braces. I knew we would need bigger shoes, but I never would have guessed that we would go from a size 7 1/2 to a size 11 1/2 Wide! That's 4 sizes, baby! (And she can still walk in them without tripping over her own feet!)

Monday night was my first attempt at putting on the braces. I quickly learned my mistake of not holding them open wide enough to make it easy to get her foot in there. She held it against me the rest of the week. :-/

We are working our way up to wearing these more and more each day and I've let Tom take the lead in putting them on since he's much better (and patient and calmer about it than I am)! She wore them for 4 hours this evening and did pretty well. We haven't started with the night brace or knee immobilizer yet but will integrate that into the routine once she's used to wearing the braces for longer during the day. The night brace is much more padded so it should be comfy, but she's not used to keeping her feet at that angle for so long.

Just wanted to share the video with you guys. After the braces were put on, you can see that she wasn't able to pivot quite as well as before... but keep in mind she's been used to pivoting on her toes for over 2 years now and she's wearing shoes that are literally 4 sizes bigger than she's used to! And, less than a week later and she's already working on steps and other obstacles. This kid never ceases to amaze me and is adapting to these things faster than I thought possible! Way to go, Emily!

Another Botox Follow-Up & Braces

(Note to Facebook friends: Please click on the title and it will take you to our Blog site where you can read the whole story but can also dig into the archives and read about and see pictures of our whole adoption from Kazakhstan story!)

Emily had a botox follow-up appointment on Wednesday morning and Tom was able to join us for this one. As usual, we mentally prepped Em for what was going to happen and assured her there would be no shots! She is definitely getting more comfortable going in for her appointments these days. Since this was her daddy's first opportunity to join us for this type of appointment she took charge and showed him the ropes.

She was so full of confidence and even had an extra little spring in her step. When her name was called she marched right ahead of us, followed the nurse back to the exam room and announced to her that there would be "No Shots!" on this fine day. Right away she started asking me for her crayons. (We always take crayons along so she can draw and color on the table paper!) She carried on a pretty good conversation with one of the nurses and then hung out with us in the exam room for a little over an hour before the doctor finally came in.

I'll preface this next paragraph by saying that Emily had an excellent visit and did great the entire time. She responded to all the doctor's requests with calm self-confidence and I was so proud of her. However, I was not so proud of our doctor.

Dr. B came in over an hour after we went into the exam room. She talked very briefly with us and then worked with Emily and checked the range of the flexibility of her ankles. Emily did great and allowed her to stretch and bend her ankles.

The doctor was not impressed that Emily's range of motion didn't seem to be improving. She can barely get her right leg/foot into a 90° bend and her left leg/foot is about 7° away from getting into a 90° bend... I think she called a -7° or something like that. The doctor seemed a little frustrated or baffled or something.

The conversation then just started to get odd. She asked me if we had ever considered serial casting and that is something that we might have to consider. However, if you refer to this post from March you'll see that serial casting is something that we had been told we might need to do all along and then you'll also kindly note that it was Dr. B that told us Emily would NOT be a candidate because she was too "aggressive". Grrrr. So, yes, we had considered serial casting and our physical therapist and I actually pushed Dr. B to consider it because stretching wasn't doing the job.

Dr. B asked me to show her how we've been stretching Emily and proceeded to tell me that we've been doing it all wrong and showed us how we should be doing it. (No problem there. I appreciate constructive criticism, but didn't appreciate the accusing way in which she said it.) She mentioned that she would probably be increasing the dose for the next botox again. And then, she asked me what we knew of Emily's birth history. I told her we really didn't know anything other than the initial diagnoses she was given (and with Russian medical mindset, she had a whole list of diagnoses, most of which are very common in newborns). I told her off the top of my head I didn't remember what any of them were but that they should be in Em's paperwork because I brought it all in with me on our first visit and they made copies. At that point, the conversation got a little more odd.

The doctor asked me if we had ever had an MRI done on Emily's back/spine. (The answer was no.) At that point, she made a comment about her login to the computerized medical records being messed up and she couldn't get into the system. After joking that maybe they were telling her to just go home she left the room.... I assumed she was going to the nurses station to have one of them log in and pull Emily's records. BUT SHE NEVER CAME BACK!

A nurse came back in the room and handed us the wrap-up paperwork that listed our next appointment. Tom and I just looked at each other. Neither of us had any inkling that we were "done" with our conversation... it was almost like the doctor left in mid-thought.

Regardless, we were already not impressed with our visit that day and we were semi-okay with being done. We stopped at the front desk on the way out and set up our next appointment for mid-October and promptly asked if there are other doctors there that do the same thing as Dr. B. Out of only about 4-5 visits, Dr. B has already had 2 major strikes and 1 minor one in my book. I was hoping to give her the benefit of the doubt and chalked it up to having a bad day. However, if this is our batting record, I can't afford for Emily (and us) to keep dealing with "bad days".

We WILL return to Nationwide Children's Hospital (I am highly impressed with NCH) but we WILL NOT be returning to this doctor. It's not a good fit and we have to do what is best for Emily.


* * * * *
In other news, we heard a couple of days ago that Emily's new braces are ready and we have an appointment scheduled for Monday morning to be introduced to them. I imagine they will do a fitting and tweak them as necessary but I'll post more after that appointment to let you know how it went!

The Big Tease: Answer

Here's the answer to what Emily was doing in the last post that gave her goofy hair:



This was at one of her physical therapy sessions. Emily was in a large inflatable "Fun Roller" and it gave her especially fabulous hair on this particular occasion.


Emily also got to experience a new swing at PT a couple of weeks ago. She was working on a puzzle with the shapes at one of the mat and the actual puzzle at the other side. This was a good workout for her. She had to move around with her hands, but also had to keep her body straightened out so she didn't go all over the place. Here's a video of her first time in the swing.




A few of our faithful followers have asked about the status of Emily's braces. They are still coming, but the process has been caught up in paperwork. I made a lot of phone calls recently and we should be getting closer. We are waiting on approval from our insurance company and BCMH before we can proceed. There are so many parties involved to make this happen and there are a lot of steps that have to happen in a certain order. We'll get there. The perk in all of this might be that it will be a little cooler out when Emily starts wearing her gear so it won't be so uncomfortable.

More Info on Splints

Emily had physical therapy on Friday afternoon and our therapist was kind enough to invite Mr. Blue, the orthopedist, along to meet Emily. Em was still very leary about taking her shoes off for him and she never did go along with the idea, but he saw what he needed to be able to see and we had a very good discussion.

I was able to learn more about the bracing that was prescribed for Emily and feel more informed now about the process of getting Emily sized for these and how and when she will wear them.

Emily's prescription is for Bilateral DAFO 2, Left DAFO 9 and a Knee Immobilizer.

Pictured below is a sample of what the DAFO 2 might look like. Bilateral means that they will put one on her left AND right legs. These are hinged and will allow Emily to kneel into a crouching position and lean forward in them, but they are essentially locked so she won't be able to walk to tiptoes or sit with her feet flipped back under her. I believe we will likely start out wearing them a little at a time and then eventually she'll be wearing them all day.




The next picture is a sample of what the DAFO 9 will look like. (These pictures are both from the Cascade Dafo, Inc.'s website.) The DAFO 9 and knee immobilizer are supposed to be worn at night for light stretching of her heel cord and muscles. I haven't been able to find a good picture of what the knee immobilizer will look like but it's very similar to what athletes wear after a knee injury. It's a brace that goes from ankle to thigh and are sometimes hinged. Mr. Blue thought it might be easier to see if they can combine the knee immobilizer with the DAFO 9 so it's all one piece. I believe it would be made of the same lightweight, white plastic that you see below.


When Emily goes in to get fitted for her braces we will hopefully take a video along that she enjoys watching. They won't have to put her in a cast, but will wrap her feet/leg with a lightweight material that will harden in about 5 minutes. Mr. Blue will simply cut it off with scissors when it's done.

I'm not sure when all of this will be happening. We have to get a few formalities worked out with BCMH so that she qualifies for braces. Right now I think her approval letter says something about orthopedic shoes or something like that, but doesn't cover bracing. Dr. B. is supposed to be taking care of getting that added in.

That's all I know for now. I'll keep you posted!

Today at Children's Hospital

Emily had another botox follow-up appointment today at Children's Hospital. Our last several appointments have been a bit traumatic for Emily and she's getting to an age now where she understands what's going on and what's going to be happening.

Last week I started giving her a heads-up that she was going to be meeting with Dr. B. I simply told her that we were going to visit her again and that she wouldn't be getting any shots this time and then I carried on a dialogue from there and answered any questions she had as we talked.

This weekend I mentioned it one or two more times and then yesterday, I started telling her every step of what was going to happen at this visit.... Emily would be staying at my mom's in the morning and then I would pick Emily and Grandma (Nanny) up after Emily's nap and take them for a long drive to visit the doctor. We would play for a little bit until they called her name and probably our friend, Renee, would take us back and weigh her and measure her. It wasn't going to hurt and it was just like getting weighed at home and she would be measured just like Em's buddy, Miranda, measured her height the other day. After that, we'd go sit in our special room where we could read books, play, and color until Dr. B. came in. We'd probably take our shoes off while we were waiting (because Dr. B likes to feel her feet and ankles without her shoes on and Emily REALLY prefers to keep her shoes on) and Dr. B could help put her shoes back on before it was time to leave. I would talk with Dr. B for a bit and then if Emily was really nice during her visit and let the doctors and nurses do everything they needed to do that we would go for ice cream afterwards.

Today, I'm praising God that with lots of prayers and preparation everything went as planned!

Emily marched back when we were called and walked straight into the first room and right over to the scale. As soon as Renee said she had the numbers, she told Em she didn't need to get her height today. Em walked out of the room like the confident little girl that she is and walked right into her exam room and proceeded to help me dig her books and crayons out of our bag. The nurses came and went and all of our shoes came off as we played in the room barefoot. A new doctor came into the room, admired Em's drawings and played with her a bit before asking some questions and then she very smoothly played with Emily on the exam table and tested her range of motion in her ankles and legs while I distracted her with "This Little Piggie Went To Market". So far, Em's scored an A+ for cooperation during her exam!

After a few minutes Dr. A left the room to confer with Dr. B. (Seriously, those are their initials -- convenient, huh?!?) They both came back into the room a little while later and Dr. B graciously eased her way onto the scene. Emily continued to play the part of the perfect patient and cooperated with all of their requests!

Overview of the adult conversations:
1) The botox injections only seemed to work for the first couple of weeks after they were given and then Emily went through at least one growth spurt that really limited the end results.
2) Emily still has extremely high muscle tone in both legs, but especially the left.
3) Emily doesn't mind doing activities in PT and at home to work on mild stretches of the muscles, but she really doesn't like us to hold onto her legs, knees or ankles to help stretch them.
4) Emily's stance and gait (the way she walks) has started to change more over the past year because she's grown and she's finding other way to do what she needs to do. She walks on tiptoes ALL the time unless we remind her to "walk with flat feet". She stands with her feet farther apart than normal and her knees are starting to turn inward. (This is typical of kids with cerebral palsy.)
5) It appears that Em's physical therapist and Dr's A & B are now finally all in agreement that it's time to put Em in braces to help train her legs/knees/feet into the right positions.
6) We took home prescriptions for three different braces... yeah, I know, she's only got two legs, right?!?! I don't know all the details yet but will know more after we see our physical therapist at our next appointment. My understanding at the moment is that there is a brace for the right leg, a different kind of brace for her left leg (because it's tighter and needs a different type of correction) and another type of brace for her to wear on her left leg at bedtime.
7) The benefit of having a prescription for the braces is that we can work with our therapist's team to have the braces made and tweaked... right in Marion... in the same building where we have therapy instead of having to drive back and forth to Columbus for that.

Our next appointment with Dr. B is 8 weeks from now and it's a follow-up to see how the braces are working. A couple of weeks after that, we'll have another botox appointment and then three weeks after that we'll have another botox follow-up appointment like we did today.

Hopefully the end results at that time are better and Emily will have another A+/Ice Cream Reward appointment!

Oh, and by the way, Emily DID earn her ice cream today and she chose to get ice cream at Bob Evans on our way home. (Yeah, I know that comes as a big surprise to some of you!) Yes, it was supper time and yes, she had ice cream -- and a few bites of blueberry bread, applesauce and some milk -- for supper. But ice cream was her main course! Hey, I promised. I couldn't help that her appointment was over at supper time!

Thanks for the continued prayers and be blessed!