Tuesday, June 30, 2009

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!

Monday, June 29, 2009

A Porch, The Bucketheads, & A Kangaroo

Once again, we've been certainly keeping busy the past couple of weeks... but not too busy to take some pictures for the fan club!

1) Our new front porch was finished up the week before last and we've been enjoying some beautiful summer evenings hanging out there. It's a great place to read, surf the web and greet our neighbors! We love it!

If you look closely, you'll see my prize-winning weeds to the right of the window air conditioner. I worked really hard to nurture those and my husband was kind enough to pull them this week for me! (Thanks!)

To finish the look and make the porch a tad more enjoyable (and usable) we went shopping for some nicely padded chairs and tables. Well, the tables aren't padded but you get my point! We still need to get a few little things to finish it off, but we have furniture!

We love our new porch. Emily has really taken to helping water the plants and we love being able to sit out there when it's raining. Great family bonding -- in the shade!

For Father's Day, we were invited to Aunt Shell and Aunt Laura's house for a pool party and supper. As always it was a hit! We even got to meet their new synchronized swimming team, the Bodacious Bucketheads! They still have a LOT of work to do on their routine but they might sign up for the kiddie pool olympics in the near future!

We were able to get our pictures taken with them, but they weren't prepared to do waterproof autographs just yet!

Last Wednesday, a friend of mine invited us to the zoo for ADOPT Day. It's when families that sponsor an animal at the zoo get some special privileges at the zoo and get to do some behind the scenes things that you don't normally get to do. (Thanks, Terri!)

We were able to go behind the scenes at the aquarium and got to see their choral reef project and then they took us to the other end of the building and we got to see the holding tank for the nurse shark and got to see the upper level of the aquarium when the fish are fed and the divers get in and out. This is a picture of the top of the huge aquarium that we normally stand and look at. There were fish, sharks and rays swimming beneath us while we were on the tour.

We got to enjoy a free ride on the carousel. I have a cute video to upload another day, but here's a sneak peak!

The kangaroo walkabout was open later than normal too so we were able to walk through that and see some kangaroos up close and personal. By this time, Tom and Emily were feeling a little wiped out and weren't too highly impressed that they were that close to the kangaroos.

We also got to walk inside the koala habitat with the koalas. It felt like we were on exhibit because there were people on the other side of the glass looking at us. We weren't allowed to touch them or take pictures of them but they sure were soft and cuddly looking!

We shared a $900 bowl of Dip'n Dots. (Okay, it wasn't really that expensive but they sure seem like it.) This was Em's first taste. She wasn't too impressed with her first spoonful but once we explained what it was and she got past the idea of eating little frozen balls she became a big fan.

There were a lot of other things to do that night too. Baby Beco (the new baby elephant) was on display. We could have met with the gorilla and tiger keepers and toured behind the scenes in their facilities. The boat and train rides were also free. There were inflatable games/rides there for family night, etc., etc.

Thanks for inviting us Terri! Our family had a great time! We loved the short lines and all the extra things we don't normally get to do at the zoo!

Saturday, June 13, 2009

A Bit Distracted Lately

I apologize to our fan club... we've been a bit distracted lately.

Two weeks ago Emily started to get a little tickle in her throat. I got an early call from her babysitter saying that she was really warm (cheeks like tomatoes) and was extra tired and had a cough. Whatever she had - she shared with me a few days later. That weekend I tried fixing her supper while she was watching TV... but,s when supper was finally ready and dished out on our plates, this is what I found...

If I'm remembering correctly, she slept here from about 6pm until 8:30pm. I fed her a little supper, let her play for a while until Tom came home from his church meeting and then she went right back to sleep around 9:30 or so and slept until morning.

Last week, Em had her 3rd set of botox injections at children's hospital. I started preparing her for them that morning and told her that she was going to be seeing the doctor and that she was going to get 2 shots. She would also need to hold really still and if she did it would go faster. My mom went with us to help hold Em down so I could talk to her and attempt to comfort her. If you remember this post you'll recall that our last visit to children's didn't go over so well. I made a point to let the nurse know our concerns and asked that Dr. B. please make sure she spend some extra time with Em before she just starts working with her and that it traumatized Em for over a month afterwards. The nurse made the note in Em's record and I figured that would be the end of that. Surprise! Within 2 hours of my chat with the nurse, I received a call from Dr. B. at home. She was very genuine and apologized for any problems our previous visit caused and that she must have been having a bad day, etc., etc. I was very surprised she called and it really felt like she understood what happened and would try to see that it doesn't happen again. Our next appointment for a follow-up is in a couple of weeks... we'll see how it goes!

On the way home from children's I set up an appointment for Em to see her pediatrician because she was still having "issues"... runny nose, cough, ear aches and a new dark circles under her eyes with goop thrown in for good measure. Once again, I prepped her for the appointment and assured her there would be no shots this time... the doctor was simply going to help her eyes, ears, nose, throat, etc. to feel better. Emily was a champ. The only struggle we had was the death grip she put on her carseat while I was trying to get her out of the car. I carried her inside to the elevator and from there something changed and she was an angel. When I signed her in, I let them know that she had a bit of "White Coat Syndrome" and they picked up the clue and let all the folks know that would be dealing with her. She ACTUALLY ALLOWED THEM to weigh her, take her temperature, listen to her heart, look in her ears, nose, eyes and throat. She was the picture of the perfect patient. I have no idea what changed, but I keep bragging about it in front of her hoping for a little positive reinforcement. (A mom can hope, right?) The final diagnosis... Emily was dealing with allergies and had a mild "smoldering ear infection" that would easily be cleared up with a little Zyrtec and Amoxycillin. So far, they've worked wonders!

Last week, Tom spent quite a few days/evenings at the house on the church property getting it ready for our new worship leader and his family to move in. I was able to chip in partway through the week to do some trimming and painting. I helped out over the weekend and again some more this week.

We were greeted by this lovely face on Saturday morning when we went to start painting the living room... I believe this is Keith's artwork. (The white parts of the eyes are actually open port holes from the living room to one of the bedrooms... with the bottoms of water bottles painted for the pupils!)

Amidst the doctor appointments, sickies, painting and work, Tom and I decided to tackle putting together Em's new playset on Wednesday. Armed with the instruction book, some chalk and a plethora of power tools, we set to task.

We started around 9:30 A.M., took a lunch break at the G&R and then kept working and I think we wrapped up around 9:30 P.M. We had a good time working on the project and are marriage is still intact. Bonus points for that, eh?

Tonight we finally had some quality time to spend on the playset and Miss Em seems to be a big fan already.

Oh yeah, and on top of all that other stuff we've been adding a new porch onto the front of our house. Well, "we" haven't but we've hired someone to do it for us. Playset construction is about as advanced as we get! This week, Emily's been thrilled with "new roof!" and "mine steps!"

Flash Forward

... I had reverse deja vu a couple of weeks ago.

It was a typical Saturday morning and Emily had put in a special request for oatmeal for breakfast. When it was ready I called her to the table and she walked in with her cell phone to her ear. (It's a plastic Hannah Montana phone that looks and sounds like the real McCoy.)

The problem: She wouldn't stop "talking" on it to eat her breakfast.

Yes, folks, I had to threaten and then actually take her cell phone away so she would eat.

And I thought we would at least make it to 12 or 13 before we would have this problem...

Friday, June 05, 2009

Dear Emily

Dear Emily,

The word truck does not start with an "f". (ahem)

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