Best Therapy Tool EVER! And other summer time tips!

I think I posted about this last year but I think it's worth another post. We bought this bounce house for Gracie's 1st Birthday when we did some researching and found out that buying one was more economical then renting one for a Birthday party. We got this one on sale and it was just over $100 but it's lasted this long - almost 3 years now! Totally worth the money. The kids just LOVE this thing, and it's so easy to put up and take down. Not to mention all the therapy sessions we've had in this thing with Annie! We can have her stand up in it and we grab her hands and jump so she can feel that movement.

We can also have her sit and the kids will bounce around her so she can work on her balance and her protective reflex.

We can also have her on all 4's and work on her upper body strength.

The best part about this bounce house is that all 3 of my kiddos have so much fun together!! See, I told you, best money ever spent!! Plus, where else can you spend about $100 and get almost 3 years of therapy??? :)

This also crossed my mind today and I wanted to share. Since girls with Rett Syndrome can sometimes have trouble with regulating their body temperature. Annie has had issues with this since I can remember. She has such poor circulation, her hands and feet can be purple and cold even on the hottest of days, however, her core body temp can increase so fast when we take her out into the heat that on days when the weather was above the low 80's we would keep her inside in the air conditioning. You can imagine how tough that was with the other two and to make matters worse, the air conditioning, no matter what the temp, would always be too cold so we would be in the house on a nice summer day with Annie in her jeans and sweatshirt. We've also had issues with bath time, in the summer with the air she will be too cold and can go hypothermic when we pull her out of the bath. We've even seen Annie go hypothermic on a 90+ degree day because we had her in lake water that was too cold. She almost instantly turned blue from head to toe and it took everything in us to get her core temp back up and we narrowly escaped a run to the ER. Not to mention that Annie has had febrile seizures when she was younger so we also have to watch her temp going up too high. Anyways, all this to say that we have taken the last 4 years trying to figure out what will work with Annie to keep her cool enough in the summer to go outside and have fun but to not get her too cold. We've come up with some things. The first is that it's too shocking to have Annie in the sprinklers or to sit in a small kiddie pool (we've actually seen the top of her body bright red from heat while the bottom half of her body was blue in the cold water - weird!) but we've found that giving her a bucket of water and allowing her to dip her feet into it is just the right amount of cool that our sensitive Annie needs. She can lift her feet out of the water if they get too cold and then put them back in when she's hot. (I know, she totally looks like she's getting a pedi!)

We also have fan misters that we have found that can keep Annie cool but not too cool when we are out and about. I bought a couple a few years ago that were specially made for "kids with special needs" and the price was outragious, now I find them at walmart, target, meijer and it's just a couple of bucks each.

Lastly, we put Annie in the shade after she's had her 15 minutes in the sun. Annie's bones are already thinning because of Rett Syndrome so we make sure not to put any sunscreen on her and we keep her in the bright sunshine for about 15 minutes. This allows her body to soak up the much needed vitamin D from the sun. Then we move her into the shade. Thankfully we have a big maple tree that gives us lots of nice shade but we also have a beach umbrella that we can move around incase Annie wants to venture from beneath the tree.

Collectively these things have allowed us to still have fun and enjoy the summer weather without Annie becoming hypo or hyper thermic. If anyone out there is battling the weather conditions and has any more ideas I would LOVE to hear them!

Activities With the Kids!

So the weather is finally cooperating and school is coming to an end (YAY!!!). I just LOVE having my kiddo's home for the summer. Of course we have the bickering and crabbyness that all families deal with but it doesn't even compare with the fun we have! I can't wait for summer vacation! Last day of school is June 17!

Little Gracie just LOVES being outside, in a bathing suit, loving the water!

Uncle Jeremy and Aunt Jen just bought a new house and invited us over for a little get together last week. Their new house has a pool! Lets just say we're going to be a hard group to get rid of this summer!! Oh, and the picture is Uncle Jeremy feeding Sammy (the salamander he and James found) a couple of crickets. Look at Annie's face - I felt the same way girl!

James had an open house where he was able to show off some of the art projects he's worked on all year long. This is by far my favorite!! In case you can't read it..

I Used to : be one year old

Now I : am a great reader

One day I will: be President of the United States of America

Love it! I told him to run in 2012!! He's working on his campaign! :)

This is me and my Jamesy at the Mother's Day Celebration! He made me a placemat and a paper purse that opens and has a poem in it.

James also graduated from AWANA - Wednesday night bible school at our church. He did great, memorized all of the scriptures in his book, read through his book twice and got all of his jewels to his badge! And of course Gracie is in typical Gracie fashion!

Annie went on her very first field trip this week. Since preschool is only Monday through Thursday Annie's field trips are always on Fridays. The problem is for 2 years anytime there was a field trip we were not able to go because Fridays are when we schedule our doctor apts. but we finally made it to one and I have to say I'm pretty sure we picked the best one! We went to Bower's Farm to see all of the animals. Annie just LOVED it! All smiles and giggles and we parked her chair so she walked all over the farm! I think the animals were pretty motivating!

They had saddles on logs so the kids could pretend they were riding a horse.

The sheep! Just look at that smile!

Can't wait for summer! Things are coming to end and new activities will start, including LOTS of swimming, bike riding, dancing, science, horse back riding, cruises and a surprise happening in the back yard! More on that later!

Hippotherapy

Annie started horseback riding therapy (hippotherapy) last week. We allow James and Gracie to pick a couple activities that they want to do durring the summer so we figured, why not allow Annie to have the same luxury (and maybe have an added benefit!). Hippotherapy has been proven to improve gait and increase muscle tone but we know that Annie LOVES her animals so it's kind of a win/win.

Annie rides for about 45 minutes and look, still sitting up so straight! What a strong girl!

We've noticed that Annie doesn't hand mouth when on the horse - she will go back and forth from ringing her hands to holding on to the handle, but NO hand mouthing! Which is good, can you imagine - yuck!

Look at Annie, no saddle, just a blanket over top the horse so she can feel all the movements!
Just way too cute with her riding helmet on!

Cruisin'

It has been BEAUTIFUL the past couple days around here so it was only fitting that we take a little cruise tonight!!

Yes, we are the cheesy family that raises their hands in the air in the convertible!

We cruised past the school that the kids (James and Annie) will go to next year - Delta Kelly. I'ts a dark picture and far away but it is such a beautiful school!

B-Dubs!

Hi Friends,

BW3's/ Buffalo Wild Wings in Rochester Hills is donating 20% of all purchases to Girl Power 2 Cure for Rett Syndrome Research!! All you have to do is print the attached flyer and come on in at any time on Wed., May 26. An added bonus is that Wed. is family/kid night at BW3's- there's a craft and discounted kid meals. We would love to see you there!! Just make sure to print the attached flyer and bring it with you. Please print a few extra flyers and hand them out to your friends and neighbors! I mean, ya gotta eat anyways, and you know ya love B-dubs!!!

As always we are so very thankful for your support of Rett Syndrome and our dedication to funding a cure!!

Love, the MacDonalds!

Feeling Great!

It's funny, whenever Annie goes through a tough time or some sort of illness or sickness when she finally starts feeling better we see a huge increase in her strength and endurance. It's like Gods way of showing us that He is with her every step of the way. We LOVE it!!! Here is a little video of Annie doing some amazing 1 hand walking, tons of smiling and even a little stop to giggle! The camera man is James, if you couldn't tell he's also Annie's biggest fan!

Wednesday, March 19 marked 4 years since Annie's diagnosis with Rett Syndrome. We took the "anniversary" as an opportunity to honor Annie and the 4 years she has spent successfully fighting Rett Syndrome. Scott and I took her out to dinner - just the 3 of us. This was VERY special because Annie doesn't always eat that much so when we all go out to dinner she typically shares my meal but this time, she got her own! We went to Rochester Mills because they offer gluten free items on the kids menu!!!

Then the 3 of us headed off to the library to see the therapy dog (Annie usually see's Lucy or Annabelle on Wednesday nights with Grammy). I just LOVED seeing Annie with Lucy! What a bond those two have!

We finished off the night with a ride in the Chevelle! Annie just LOVES her rides in the Chevelle, what girl doesn't like to feel the wind in her hair??

After 4 years we continue to believe that Annie WILL be healed, that she is held in the hand of God and that He "will restore health unto her and heal her of her wounds"!

An Update

We've had a crazy week (so what's new right?). Just a couple things that I wanted to share in the hopes that our followers will keep Annie in their prayers. If you follow this blog no doubt you have seen that our little Annie hasn't been herself in a little while. Well, we saw her neurologist this week and they were concerned with Annie's excessive sleeping last month coupled with the shallow, rapid breathing we saw when she was sleeping. That sleepiness has since lifted and now we are back to her normal routine (which is anything BUT normal for a 5 year old). Annie typically wakes up between 2 and 5 times a night for anywhere between 5 minutes to 3 hours we've tried many things to get her to stay asleep (we don't have problems getting her to sleep, but staying there is the issue) and we have settled on Benedryl - it gets her back to sleep with in 15 or 20 minutes, gets her to sleep for at least 4 to 6 hours and with all side effects considered it seems to be the safest bet for our little angel. However, we have been using this for a couple years now and would really like to see Annie establish her own, healthy sleep routine.

Anyways, back to the neurologist, He was very concerned about her excessive sleeping month and weird breathing and the fact that Annie's "normal" routine is very much abnormal. He has ordered an MRI of Annie's brain to determine if she possibly had a virus that may have caused damage to her brain. He has also set up a consult with a sleep medicine/pulmonology doc. I don't really feel like it was a virus that caused all of this but I do know that Rett Syndrome will quite often take our little girls in their sleep and I can't tell you how unsettling it is to see your daughter sleep to those lengths especially while they are having quick, shallow breathing (pass the xanax please). Hopefully the tests and the new doc will shed some light on what's going on and possibly have some sort of solution for all of this. I just pray that Annie will never have a month (or day) like that again. Oh, an added bonus, Annie needs to be put out for the MRI - awesome! Prayers for a clear MRI, an uneventful time spent under anestesia and a remedy to Annie's unsettling night time sleeps would be so appreciated.

To add to the madness we had Annies move-up IEP to kindergarten this week. You special needs mom's are feeling me right now and those who aren't familiar an IEP is an Individualized Education Plan for the school and to put it bluntly the more needs your child has the more stressful the meeting is. Moving to kindergarten is very tough because preschool is soooo safe! There are many things that have gone into this plan including our oldest James, which I know seems weird but I will give more info later, when our IEP is finalized.

Lastly, we spoke again with our GI doc. He is a great man and has served us well but even He is stumped by Annie's continued GI pain and screaming fits. Although they are not as intense as they usually are we are cautiously optimistic and would not be surprised if they came back full force very soon. Our doc has basically told us that he has done all he can and that there is nothing more he can do at this point. Thankfully at this same time we were introduced to a doctor in Chicago that may be able to help us. He is very familiar with Rett Syndrome and may be able to shed more light on what's causing our Annie so much pain. The only problem now is insurance and it actually covering an out of state doctor. So we could use your prayers in this area too!

This is what we have been dealing with this week. At times it seems like its just too much but all of these issues may bring us brighter day's, relief from pain and a stronger, healthier, happier Annie. We hold onto that and pray that God's hand continues to stay firmly planted on our sweet Annie.

"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future" Jeremiah 29:11

Sorry this was such a "downer" post - that is the reality of Rett Syndrome, however, I am blessed to have some comic relief when things are looking bleak from my other 2 kiddos. Here is Gracie showing her wii boxing moves - her new favorite thing - although she likes to play by herself much better because the punching bag never wins!

The Kiddos

Well, unfortunately Annie is still trying to mend. It seems just as she's getting better she comes down with something else, or the same thing, at this point, I'm not even sure what's going on. I'm just praying that it is completely gone soon. We are also done with the Lokomat and we were not approved for physical therapy in April so we have been much less busy than we usually are - which is a good thing!

The kids have been living it up, especially during the warmer weather.
I love to just step back, stop rushing and just watch the kids be kids. They are so much fun and have such unique personalities. Gracie is at a wonderful age (3 1/2). She's old enough to do most of the things she wants to, she's extremely independent and just has a love for life that you can physically see in most everything she does!

Gracie walks like she has springs on her feet, always bouncing and jumping!

Gracie shops in high heels and tu-tus!

She swings with her eyes closed! (so does her daddy!)

Rain boots on sunny days - or flip flops, or high heels - depending on her mood!

Gracie loves to be outdoors, preferably in either a bathing suit or a leotard! A rainy day doesn't stop her!

And of course she has mommy's sweet tooth! Gracie is energy, excitement, happiness and joy! She's constantly making us laugh and brings such a spark to our family.

James is 6 and has always been very methodical, intellectual, and imaginative. James invents and builds and creates and loves everything science! Recently our computer crashed (yes, that's why I haven't been blogging) - James's response "mom, let me get my zip drive so you can back up my invention files". He has amazing ideas for new inventions and when we're able to we type them out onto the computer to document them. You can't even imagine the things he's invented for Annie and girls with rett syndrome!

James and his kinex robots

James and Sammy the salamanderJames would much rather "set up" the water park than play in it!James finds happiness in rainy days too!James is constantly amazing us with his creations. He loves books, his favorite channel is the Discovery Channel and is like a sponge, just wanting to learn everything he can. James also has an amazing heart, he is so kind and loving. His most favorite person in the world is Annie. He's constantly loving her and taking care of her. Lately he's been able to get her to say "hi". It's the most amazing thing, just look at the way she responds to him - I've never seen a bigger smile!

And of course we all know that the sun rises and sets with our sweet Annie. Her smile brings us hope and her laugh makes all the clouds disappear! We've been trying to get her up and out as much as possible when she's feeling up to it.

Annie walking with daddyPlaying "hide and seek" with Gracie! There is nothing more peaceful than watching sweet Annie sleep!
Scott and I are blessed beyond measure with these 3 amazing children!