Medical Updates

2 appointments, 2 kids, 2 different places, one at 9am and the other at 9:30...it was an interesting morning!  Thanks to my Mom, it all worked out quite well.  I dropped her and Bryce off at PCH for his GI appointment and then headed over to CRS for Annalise's orthopedic appointment.  Luckily, we both finished up about the same time, so that worked out well.

About a month ago, Bryce had a weight check and had lost weight so they increased his calories and had him check in again today.  I'm not sure what his weight was today, but they have kept his feedings the same.  We do have to go back for a weight check in 2 months and then see the doctor a month later again.  His weight is always up and down, but he is holding his own pretty well.  Dr. McOmber was impressed again that the green smoothies that I have been feeding Bryce (through his tube) continue to keep him regular enough to stay off of Miralax.  He always gives me a bad time about it (in a joking way), but told my Mom today that he has other patients that he sees who could really benefit from something like this and he thinks I should share the info with them.  I would be happy to do that.  I love those green smoothies.  I also like that he is seeing them as a good thing.  Maybe as I talk to him more about switching Bryce to a "real food" blended diet rather than the formula he is on now, he will be open to working with me on that too!

Bryce's other appointment this week was with at the Spasticity clinic.  The doctor he sees there really wants to use botox to help loosen up his arms.  I don't really like the idea because so many people who have kids with AGS have had it done and then seen regression in their children.  I don't know if it is really worth the risk.  She increased his Baclofen a bit, so I think I will see if that helps at all first.  Hopefully the increase will not mess with his breathing like it has sometimes in the past.  She set up another appointment for 3 months and said to give her a call if we decide that we want to do botox before then.  Oh, decisions!

As for Annalise, it looks like she will be having surgery to loosen her Achilles tendon.  Her little legs are so tight, it is hard for her to walk.  She also had an appointment this past week at the spasticity clinic and they started her on Baclofen as well.  I have been able to see a bit of a difference, but not a whole lot yet.  The orthopedic doctor that we met with today said that it might help enough that we would not need to do surgery, but he thinks we should go ahead and schedule it and then I can always cancel if we decide that it isn't necessary.  She is not even able to wear the AFO's that are used to help stretch that tendon because even if I can stretch her enough to get her into it, her foot pops out because it is so tight.  The tightness and the rubbing the wrong way on the AFO's cause her pain, so maybe the surgery is going to be the best.  It is the same type of surgery Bryce had for his hips, just a different area.  That surgery helped him a ton!

Annalise also had an evaluation for an Aug Com device.  She still talks well for the most part, but there are times when she fatigues and resorts to pointing, signs, or trying to speak although we are not able to understand what she is saying.  Her speech therapists thinks we should go ahead and get her the device now so that she can use it when she needs it now and then when/if the time comes that she loses the ability to talk, she will already have another way to communicate.  The people who did the evaluation thought the same thing and she will be getting her own device withing a few months.  They tried out 3 different devices and since her upper body strength was too weak to push the buttons on two of them, she will be getting an iPad with the communication apps installed into it.  I'm pretty sure that her older brothers will think they need a "communication device" too when they see what she has.  :)

And last but not least, some very exciting news.  Tickets have been bought and all arrangements have been made for us to meet with Dr. Vanderver in Washington DC. in April.  We are really looking forward to meeting with her and hearing what she thinks about Bryce and Annalise's condition.  I already have a list of questions for her that I am sure I will add to as time goes on.  It will be so good to meet with someone who knows about AGS and other leukodystrophies and to get her opinion.  She also works with Professor Crow, the doctor in England that has been working with us, so that will be helpful as well.  Hopefully we will come home with a few more answers or at least some new ideas of what to watch for and be aware of as we try to help Bryce and Annalise through all of this.

March 3, 2012 FINISH STRONG!

The morning was beautiful.  As we arrived, we could already tell that the place was full of people.  We had hoped to get there a little early, but we didn't quite make it until just before 8AM.  The parking lot was already full of cars.  Balloons and banners greeted us as we entered.

The Run

It was very humbling to realize that all of these people, some we knew, many we did not,  had come out and were running to support our children.

John finishing his first 5K!  Great job!

I was so proud of William and Jacob.  Along with some friends from church and some from school, they completed their first 5K!  Way to go boys!  Their PE teacher from school, Mr. Palm, was there.  He gave dress down passes to everyone in the school who ran in the race. 

The morning started out a little rough for Bryce, Annalise, and Spencer.  I'm not sure if it was the time of morning or the crowd of people, but we had a few tears and some anxiety to start off the day.  I was a little concerned, but luckily a great breakfast of pancakes, bacon, and milk (along with a little TLC from some of my life savers Dacia and Heather) seemed to do the trick and soon they were all enjoying the festivities.

Christopher, Spencer, William, Jacob, and Nathan. 

There were silent auctions that went on throughout the day as well as a live auction toward the end of the event.  Many, many wonderful items were donated for the auctions and people were very generous.

The kids all seemed to enjoy the bounce houses.  Bryce was no exception.  He loved sitting at the end of it and watching the kids slide down.  Thank you Chris for helping him enjoy the day!

John and Annalise sliding down the slide.

The cotton candy was also a place that attracted many people.  

The line for the cotton candy.  I think our boys hit that line a few too many times throughout the day.

Even Annalise got to taste cotton candy for the first time.  She wasn't so sure about it with the first bite, but she tried it again and was hooked!

Yes, it truly was bigger than her head!

My mom, Bryce, and my sister Sheri.  

I'd say Bryce was very happy to see Aunt Sheri!  She is definitely one of his favorite people. 

Brother Cooper from our bishopric and his family took Annalise around for a while.  Here they are looking at the pony.  Bryce and Annalise both got to have a ride on the ponies!

Most of these photos, including the ones here of our family, were taken by my friend Erin from The Treasure Box Photo Studio.  She did a fantastic job!  Thank you Erin for donating your time and talents so that we can have pictures to help us remember this incredible event!

Our strong, Sweet Annalise!

William and Jacob

Our strong Bryce

What strong (and handsome) young men!

The strong Clayton family!

We are strong because of the many hands that hold us up and support us throughout our days!  Thank you!

Bryce and Annalise video

Here is a link to the video that they played at the fundraiser on Saturday for Bryce and Annalise.

http://www.youtube.com/watch?v=gH_EhYMn4ds

Feel the Love...Finish Strong!

What an incredible day we had yesterday!  I planned to write this post last night, but ended up falling asleep while putting Bryce to bed and didn't wake up until 5:00 this morning (still fully dressed in yesterday's clothes)!  Everyone slept through the night which is a miracle in and of itself.  I guess we all wore ourselves out during this wonderful event!

I want to say thank you to everyone who had a part in the Finish Strong fundraiser for Bryce and Annalise.  The items that were donated were incredible!  The turnout was astounding!  The generosity, love and support that we felt were very humbling!

There will be many more pictures coming and a full story on the day, but for now, we just want to send out a

huge, heartfelt

Thank you

to all of you!

Sometimes I Hate

I know many people do not like to use the word hate.  In the past I have even been known to tell my children, "we don't hate".  But today there is something I hate.  It is this horrible disease we call Leukodystrophy!  Although there is so much good in our children, there is NOTHING good about Leukodystrophy!

Leukodystrophy has taken the lives of two more children!  A sweet baby girl just 6 months old, and a beautiful 6 year old boy.  The 6 year old had AGS and passed away after a three week battle in the hospital due to a respiratory infection.  My heart goes out to their families.

Once again, these children are children that I only got to know through the internet and yet my heart hurts for their families and for the short lives they had here on this earth.  I dread the day that one of my close friends loses a child to this horrid disease, or the day that one of my own children no longer has the strength to overcome something like a common cold and I have to tell them good-bye.  How do you ever prepare for that!  Oh how I hate, loathe, despise this disease!

Reasons You Should Think Twice Before Messing with a Special Needs Mom

A fellow special needs Mom shared this on Facebook so I thought I would share it here
.
REASONS YOU SHOULD THINK TWICE BEFORE MESSING WITH A SPECIAL NEEDS MOM
1. Some of us have given up on social skills and don't care what we say or do.
2. We're not afraid to have A serious "meltdown" of our own.
3. We are tired and all the patience we have is for our kids
4. We have A far shorter fuse for nonsense as a result of our responsibilities but A FAR thicker skin.
5. We can get you in a hold/lockdown position in less than 3.5 secs.
6.We can shoot you a look that would make a linebacker tremble in his boots.
7.Chances are it's been awhile since we've had a full night of sleep and that will give us a reason to plead insanity.
8. Our tolerance and patience is for our kids who didn't choose to have special needs, not for someone who CHOOSES to behave inappropriately and is ABLE to control their actions.
9. We're probably already on edge and it would be stupid to push us over.
10. We are sleep deprived and already defensive, and we spend all of our patience on our children, doctors, therapists, social workers and teachers, why would we waste an ounce of it on a total stranger?
11. We've had to fight from the moment of our child's birth so by the time you make us mad we're seasoned battlers and could win a war.
12.We devote our lives to our children and don't need more stress and people who don't understand our life.
13. Wherever there is a cub, there is a mama bear...We're always watching!

Bryce has his (loaner) power wheelchair back!  It took a while to get the back fixed on it so that he would fit in it and it would give him better support, but it is here and he is loving it!  We are still working to get the switches just right, but overall, he is doing great.

Annalise loves this playground equipment at Ryan House

Bryce and Mom after a long night!

Bryce, Annalise, Jacob, William, Spencer, and John in front of Organ Stop Pizza.  We took the kids and the Carter family to Organ Stop Pizza last night for dinner.  What a fun place!

Mom left the cookie dough a little too close.  "Hmmm, what to do?" 

Grab the spoon and dig in! 

The following video clips are from our Family Home Evening when John's Mom was here visiting.  For those of you who don't know what Family Home Evening is, it is a time each Monday when our family gets together  and spends time singing, playing, learning about Jesus, talking about the upcoming week, and enjoying a treat. They get kind of crazy sometimes, but that just adds to the fun!

The first one is Annalise "flying" with her brother Jacob

This night, it was Bryce's turn to lead the music.  We are singing one of his favorite songs, "I am a child of God"

This was after our treat.  We had homemade peanut butter cups.  I think most of it ended up on Annalise.  Here she is singing a song that she learned from the signing time videos.  She is doing the sign for dirty. 

After we washed her up I tried to get her to sing the "clean" song...however as you can tell, she had other plans!