Water Park of America

We spent about 5 hours at the Water Park of America today. The water park sponsored a pool party for the MDA families. Everyone had a great time. Well, except for Angela. Poor baby had to stay with grandma and grandpa and miss out on the fun. Hopefully we didn’t traumatize her by not including her. lol    It was really nice to all be doing something together that all the different ages of our kids could enjoy.

Joseph finally tried the body board surfing. Him and Alex had a blast doing that. Matthew and Elizabeth tried it also, maybe next time they will enjoy it more. I think it scared Elizabeth a little bit when she fell off the board. Emma and Anna loved the area for the smaller kids and the lazy river. Anna even went on the really high and long family water slide. She liked that too, but Brent got a little tired hauling her up all though steps.

Of course, we were going to leave early because the kids had school the next day, should’ve known better than that. How could we tear the kids away when they were all having so much fun, and being pleasant. (bonus!!) 

   

Technorati Tags: Water Park of America,WPoA,MDA,Muscular Dystrophy,family fun

School '09

Here we go........

Annual U of M Trek

I had my annual trip to the MD Clinic today. As long as we had to go to the cities, I had scheduled to get my wheelchair serviced today too. Side note on that.... a week and a half ago I was going down the hall and stopped to say something to Elizabeth in the laundry room. As I stopped and started to turn my back caster wheel fell off. Yes, right off, and there my chair was stuck. Thankfully, I still have my old scooter around for a back-up. If I didn't have the back-up, my poor kids would have had to put up with this lady......

 

Anyway, back to the Doc. appointment. He always asks if there is any changes. Of course there is never daily changes, but looking over a whole year there is always some more muscle loss. Just the nature of Muscular Dystrophy. Then he does a quick assessment of the strength in all my muscle areas, then usually he tells us there is no hope for me. No, just kidding!! He usually tells us they are working on a cure, but they just aren't there yet. Well, this time we got uplifting news! First, there are many forms of MD. I have Limb Girdle. Then there are several types of Limb Girdle, I have type 2E. My doc said they have done clinical trials with type 2D were they use a type of virus to deliver the corrected gene to the muscle cells, and it appeared to work! Since the different types of LGMD have different defective genes, they will need to do more testing to see if they can get the other genes delivered to the muscle cells as effectively. He said, it probably won't be in a year, maybe, but probably not in two. But, he seemed quite optimistic about them finding a way in three to five years. Now, I'm usually the optimistic type, and I'm very excited about the news my doctor gave us, but I'll save my celebrating until he tells me I can start a treatment. I think it has lifted my spirits though, I feel a little more cheery!

 

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About 2 weeks ago Joseph found a really cool rock and gave it to me.

My kids are so sweet!!

 

I'll be updating posts from between the move and now. Check back....

Technorati Tags: Muscular Dystrophy,Limb Girdle,heart rock

"Our Six Year Old's A Surgeon"

Guess this sums us up.
I had two requests for homeschooling this year. So, we are going to give it a try again. Should be fun and interesting.
Only a little over a week left until school starts. I better go get some books ordered now! I sold most of what I used in the past. What was I thinking!!



Here is another great video by Tim Hawkins for you to enjoy. Too funny!!

Big Ears!

Elizabeth: Mommy, what if somebody had really big ears and a bird laid an egg in it?
Mom: Umm, I think they might notice a bird laying an egg in their ear.
Elizabeth: Well, what if it laid it in there when the person was asleep?.... It would be really noisy when it was time for the bird to hatch.
Mom: Hmm, I'm glad my ears aren't big enough for a bird egg to fit in them.

Chalkboard Art by Elizabeth:

(she is always writing love notes)

"Look mommy, I'm a saint."

"No, I don't want you to take my picture."

Angela at two weeks. That has got to be the fastest two weeks of my life.

She's here!!!

Today we were scheduled for a c-section. We were supposed to be at the hospital at 6am but we didn't make it until about 6:45. I was hoping they weren't going to make me wait another week or something because we were late. lol Anyway, they got me all ready for the surgery and brought me into the operating room at 8am and at 8:30 we got to see our newest little princess.

Angela Catherine

7 lbs 12 oz          21" long

 

She checked out perfect!!!

 

There is a rumor going around that I had some difficulties.    Here is what happened...

Towards the end of the c-section I started to have some difficulty breathing. Then it started to feel like my chest was being crushed. While I was being stitched up my heart rate started to go up... a lot. At this point I was only a little concerned that I couldn't catch my breath.      My doc had to do an abbreviated stitch job as they were concerned that I might have had a pulmonary embolism.  Now I was thinking, hmm this could be bad... good thing I'm in a hospital.   Right after they were done stitching me, they brought me to have a CT of me lungs. I had to keep my eyes closed for that... I'm a little claustrophobic. Then they brought me to the ICU to wait. We found out it was not a pulmonary embolism. But my heart went into atrial fibrillation. That caused my BP to drop. It was bad enough that they told me they needed to shock my heart to get it back into a normal rhythm. When they said "shock your heart" this normally calm unshakable person that I am got scared! Good thing they only gave me about 30 seconds to think about it. That's how long it took them to sedate me so they could shock my heart. It worked, when I woke up my heart was back to normal. I was sleepy and very nauseous for a few hours after, then I felt just like my old self again. What caused it is still unknown. The doctor said it could have been placenta that got into my blood, which will remain a mystery if that was the case. Or it could have been from some underlying heart problem, possibly from my type of Muscular Dystrophy. If that is the reason, than it will most likely happen again sometime in my life. My doc said could even be decades later but most likely it will happen again.

So, that's the birth story for baby Angela.

And yes, I am appreciating all my babies a lot more these days!!

Technorati Tags: new baby,c-section,atrial fibrillation

Chocoholics!!!

As I was directing the girls in the cleaning of their room on Saturday, I saw something under one of the beds. Yes, I even made them clean out under there. They both played the “what? I don’t see anything” game. Then they pulled out these…….

They just wanted to “keep some snacks handy” in their room. At least they were in baggies so they wouldn’t get the carpet all full of chocolate.

Never Ending Winter

This has been another looooong and very cold winter. This past Tuesday we had another blast of snow with very cold temps. School was canceled… again. Then They had a late start on Wednesday. (I’m really wishing we could have moved south instead of staying in this rotten cold and snow.)

 

Don’t you hate it when your earmuffs get stuck in your hair?!?!?

 

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Joseph and Matthew got and early birthday present of and R2-D2 clothes hamper for their Star Wars bedroom. It started out life as a can cooler display in a convenience store, but we rescued him and turned him into something more smelly useful. I will post more pictures of their room when they get their wall project done.

Just had to make note of this……

Tonight, Elizabeth ate more the one bite of her supper. I guess it’s not that she’s picky, she just has expensive tastes. We had fake stake mock tenderloin.... AND SHE ATE!!!

By the way, here it is about 3 months since she lost her 2 front baby teeth and the new ones still are not growing in. AND.. she has lost another one on the bottom. If she keeps this up she have to switch to a liquid diet.

Science Fair - Matthew

Matthews turn to do the science fair. At St. Philip’s each grade has one first place, one second place and one third place, the rest get a participation ribbon. The 1st, 2nd and 3rd place kids get to go to state. Matthew got 3rd place of the fourth graders. He was so excited, he said he “didn’t hear a word they said after they announced my name.” He also said his knees were shaking when he went up to get his award. His topic/subject was, does music affect test taking scores. The whole family got to enjoy helping out Matthew with this project by taking tests 3 nights in a row. He did a great job with it. He did complain and stall, because I wanted this to be his work and not mine. He was hoping I would think for him, but I was persistent in making this be his project. After he got his third place I asked him if he was proud of it. Of course he said “yes”. Then I pointed out to him he wouldn’t be so proud of it if it wasn’t really his work and he agreed. So, now he gets to go to state with his project on May 2nd. Way to go, Matthew!!