Sunday, March 24, 2013

4th Annual Mito What? 5K

Saturday was the 4th Annual Jackson Culley Mito What? 5K in Millington TN. The day started off with plenty of clouds and cold temps. The forecast called for rain but thankfully we didn't see any of that! Sadly, the honoree, Jackson, was not able to be at the race. Emily was with him at the hospital because he was sick and was admitted for observation. Thankfully he came home today, his 6th birthday! Team Asa grew some this year! My mom and dad, Asa's cousin's Rayn and Jakob, and my cousin Lacy, have been supporters from the very first race! This year we added Asa's birth-3 teacher (even though she didn't get to race with us) and Barry's cousin Jessica and her hubby Emmett. They are the runners in our group!
Told you they were runners! Both placed in their age groups! How cool is that! I've decided that if I'm not a runner (clearly I'm not!) then I'm going to throw all my efforts into being a better cheerleader! Thanks, Jessica and Emmett for running so fast for our boy!
How sweet is this picture?! Asa had a terrible case of Moma-itis and was overstimulated. Lots of people took turns holding him or distracting him so I could be social and chat. These teenagers were the best too!
Check out these awesome Mito Moms! Our little group of 4 families has grown in the last year too. I'm sad new families have gotten diagnosed but I'm thankful we have all found each other!
And the mito dads are pretty awesome, too! They don't get much credit sometimes!
What we did while other people ran! :-)
Asa started off the Jack's Pack by putting his feet on the line and taking off (justblike the little boy next to us did) but he turned around after 3 steps and went back thru the finish line!!!! He liked the flags!
Like I said earlier, Asa was overstimulated and antisocial at the race. He was a social butterfly and Mr. Independent at Chic-Fil-A though! When I got back from ordering Asa and Barry were coming out of the playroom. I commented that I wished Barry hadn't taken him in there. Lacy said that Asa got up and walked in there by himself while they we're talking! It was not a clear view of the playroom and someone had to let him in but he was ready to play! Gracie helped him climb into the towers and at one point he got onto the far side and was playing in the airplane. He would NOT come down. Gracie finally had to bear hug him and drag him to the slide where he happily slid down all by himself!!!
It was a great day with some good friends! Over $20,000 dollars was raised this year! Next year will be the 5th race. We only need to raise $10,000 or so more to donate over $100,000 for the 5 year total! How cool is that?! Angie said a $100,000 donation is enough to fully fund a research project! Can you believe little ole us could have accomplished that?!! Just little ole me and little ole you....fighting mito together!!!

Tuesday, March 19, 2013


Asa had his very first hippotherapy appointment this afternoon. Hippotherapy is theraputic horseback riding. Not only will he ride a horse but he will do therapy skills on horseback! I've been told how amazing the horses are for kids and after today I believe it!

I was pretty sure we'd get to the stables and Asa would freak out. We left school and he was a little gaggy so I was nearly positive we were wasting our time. As we began the evaluation and Asa started having a fit (complete with a head bang into my chair), I wanted to just get up and leave. Instead we pushed on. Two young helpers came over with a therapy box and distracted Asa while I talked.

Then it was horse time and magic happened! I watched from the sidelines as they tried to get Asa to touch the horse. He gave him 2 small pats with some resistance. Then they tried to get him to hold onto the saddle and throw his leg over the horse. That wasn't happening but he did let them pick him up and sit him on the horse. Then they were off!

Asa looks pretty good on the ground. He seems to have adapted his poor muscle tone and somehow looks tight and in control. When he got on the horse though all the low tone came right back! He had on a helmet but it wasn't very heavy. Still, he often lost some head control and his head fell backwards. The helpers either helped him get it back up or reminded him to pull it up and he straightened back up again. It was amazing to see him working so hard on skills that he's mastered on the ground. this therapy is really going to work him and help him get stronger!

And sensory wise he was a pro too! He handled the horse and the sounds. I've got a video and in it he waves as the horse comes over near us. He completely did this on his own! Later, not on video, he got upset during a tough therapy task. He let out some sobs but then pulled it back together, wiped his tears, and pushed on! It was sooo amazing! I'm so excited about next week!

One of the big cons with this therapy is the horses and my allergies. I took an allergy pill before we got there and had allergy eye drops ready but is till reacted! I came out sneezing, itching my eyes that were quickly watering and swelling. We wiped our hands with wipes, sanitized and changed clothes as soon as we got home. It'll be worth any sneezing, watery eyes and itching just to watch Asa grow by leaps and bounds in his skills!

Check out this posture in the video. I took the sound off because we were all talking and loud! Shocking, right!?

Also, check out this friend Asa made when we first got to the stables. This dog wanted to play so bad but Asa just isn't that into dogs. In fact, he really doesn't like them at all. When we got home though, Asa waved to Gracie's dog, reached out to rub her back twice and even sat down so he could lean in and give her hugs!! Unheard of, I tell you! Unheard of!

Things that make me laugh

I've got to turn in some forms for Asa's IEP that's quickly approaching. I read a blog a few months ago and now it comes to mind when I hear "IEP"! Sooooo, Ways To Make Your Next IEP Awesome (my favs from this BLOG POST)....

 ~When someone brings up goals your child has accomplished, pat yourself on the back and say, "good for me"

 ~Insist on doing "Duck, Duck, Goose" around the table to decide who has to read their section first. Demand the outcomes of the game be written into the minutes.

~Bring all of your other kids in. And other people's kids.

 ~Hand out your own goals at the beginning of the meeting. "The Speech and Language Pathologist will bark when someone says 'IEP' 2 out of 3 times with minimal prompting" Measure goals at the end of the meeting.

 ~Start every sentence with "I read on the Internet...."

 ~....or "my psychiatrist says..."

~Come in all decked out in sensory attire: weighted vest, lap pad, chewelry and fidgets.

 ~Bring in Scooby Snacks and throw one to the person whenever you like what they said.

 Oh, and there's soooo many more. Go read the blog!! Even though I've read it many times, I've laughed out loud at some of the entries while typing this. I'm easily entertained though so you may not be rolling on the floor like me!

 I will note that I've not had a bad experience in an IEP! Asa has a great team and I get to see many of them often since I take and pick him up from school. Many go out of their way for him...and me! But even at best, an IEP can get dry and boring and I bet most of the team wouldn't object to throwing in some humorous moments to break up the meeting. If I get bored with my own kid's meeting how must they feel to do several meetings in one day! Yawn!

Friday, March 15, 2013

Much Better

Asa is feeling sooo much better! He could've gone to school today since it'd been 24 hours since his last bout of diarrhea and well over 24 hours since his last fever. I kept him home though so I could monitor his energy level. He's been sleeping 14 hours at night plus a 2 hour nap! He skipped his nap today and you could tell!!! We had a fun day today and I'm glad he was home to enjoy it! We started out our school but as the morning wore one it became clear that the sunshine and warm temps were not to be missed! We rushed through our necessary school work and then had a fun Friday outside! We had the windows and doors open while we worked. Asa has recently learned to open the deadbolt on the front door and open it but he hasn't gone out. The back door has a screen door on it and we've caught him going out of it on his own! He was following Gracie around on his tricycle when I could tell he wasn't with her anymore. We looked and he had pushed his tricycle out of our yard and into the rough dirt strip that leads thru the woods to my parents house next door!! He had gotten stuck in the big ruts and was pretty mad about it!
Later this afternoon we had his Power Wheels out. He was riding all over and we really noticed how intentional his driving was. He was squeezing thru some tight spaces! A few minutes later we could hear the car moving away from us. I followed him at a distance. He never looked back or seemed to hesitate for a second! He headed straight for the trial to my parent's house. This time he chose the smoother but longer route. He was a decent driver. At one point the path narrows and gets close to the road so I yelled when he got there. Of course, that only made him look behind him while pushing the gas! It's a wonder I get him in the road! He was great until I spoke up! He made it all the way to my mom's though! No slowing him down!
All of this is truly amazing when you remember that it was just this time last year that he started walking with the walker! And even then he was scared and hesitant. No more!! This boy has things to do and he on his way!!! Thanks so much for all the love and prayers for his speedy recovery. I'm so thankful that this was just a stomach bug! Many of our friends are fighting much, much worse tonight! Praying for all my tough mito kids and families!!

Wednesday, March 13, 2013

Home Sweet Home

I should've updated yesterday but I was soooo tired!! We were discharged at 2pm. We got home and were locked out of the house! Can I tell you how fun it was to be so tired, gave a full afternoon and evening still to go, need a shower to wash hospital funk off and not be able to get in the house! Thankfully anna had a key and we only waited 30 mins for her to get home. 

Asa tested positive for rotavirus. They just wanted to do pedilyte and then see if he could tolerate a cup of formula before they discharged him. He was still having diarrhea but I told then we could handle it at home. The peds doc took a detailed history and called Asa's Vandy doc to be sure he didn't miss anything. It was really great for the peds doc to tell Dr Tyler that Asa was his first mito patient in 32 years of medicine. It's not uncommon to met docs that don't know mito but they usually try to play it off or use ancient info to make assumptions that are sooo wrong! For instance, a lot of docs assume Asa can't see because there is a form of mito that affects the eyes. Apparently it's taught in medical school. Anyway, Dr. Tyler told him that fluids and sugar should be monitored closely. He also told him that all mito cases were different and you treat each case differently. It's so common to find docs who have egos too big to work together but thankfully this was not the case this time! 

Since Asa was puking and pooping they took precautions and gowned and gloved up each time they entered his room. They left a stethoscope and thermometer in his room too. They were trying to keep Asa's germs in his room but I saw it as they were keeping other germs out of his room! Hospitals are GROSS! 

Asa has done well at home. I tubed in small amounts of pedilyte and he handled it fine. He had a diluted cup before bed and one this morning. So far so good. He did wake up covered in hives on just one leg this morning! I have no idea what that means! I gave him some Benadryl and he's itching less. 

I'm looking forward to a normal, regular, routine day around here! Maybe we'll find one soon! :)

Tuesday, March 12, 2013

First ER trip

I'm blogging from Jackson Madison County General Hospital and its 5 am. We got settled in at 3 after getting here at 10:30 last night! This may be dry and boring but it's mostly for my I've only had 2 hours sleep ! 

Asa ran a fever all day Monday. I didn't take his temp but I knew he felt warm and gave him ibuprofen. He was kinda tired all day but there was no coughing or pulling at his ear or obvious sign of illness. He didn't eat but drank 2 cups of his formula. 

I took his temp around 4pm. The thermometer is sooo inaccurate under his arm and I did a rectal. It was higher than I thought so I sat him on the couch to get an ibuprofen. He puked all over everything! At bedtime, 7ish, he went to bed normally but then he started a weird cough. We thought he was puking. I went to get him and he was in bed, drawn up and shaking uncontrollably. I took another rectal temp and it was only 99. We noticed his finger tips and lips were blue. He was coughing, yawning and gagging all while shaking. We bundled him up and u tubed in some homemade Pedilyte. He handled it so we did some more. He had 60mls in all. Then he started puking! 

I called the ped who said to go to the ER. After the fluids and puking he was looking better. No shaking, not as blue, he was squealing and fussing. Except his temp was 102.7. 

At the ER the flu and strep test was normal. He was slightly dehydrated. The chest X-ray showed a slight upper respiratory infection. His O2 was 95%. They are taking this mito business very seriously though and admitted him. 

He's in the PICU step down unit. His temp was 102.2 at midnight. At 1am it was 100.2 and now at 5am, it was normal. His O2 is perfect now. They didn't start and IV and fluids. He drank a little Pedilyte and I tubed in 4oz. He's had several diarrhea diapers. The last thing they said was a rotovirus test. 

He has been amazing! He was wide awake until 3am. He lay in the bed listening and watching. In the ER he played in a basin of water and jumped on the bed. He sure didn't act like he was sick. I really thought he'd have the flu or pneumonia and they'd fix him right up. The ER doc mentioned a seizure. We'll see what the peds doc thinks in a little while. I think (hope and pray) that he is fine and just had a crazy fever! That's possible, right! And in my crazy packing I remembered several important items but we got here and I'm out of wipes! Not even in my spare stash places! I was using wet paper towels until we got to the peds floor!

Oh and as we came down the PICU hall I heard a familiar voice. The school nurse that took such great care of Asa  is now here!!! I was soooo happy to see her! 

Sunday, March 10, 2013

Spring fever!!

We had the BEST day yesterday! The sun was shining, the weather was perfect and we enjoyed it so much! Asa loves being outside and he stayed out almost all afternoon. I couldn't believe how much stronger he was than even just in the fall. I think we are all ready for the sunshine and warmer temps!!

He rode his Power Wheel around with purpose! He'd turn so he could follow Gracie on her bike. He ride right thru the middle of our batting practice even though he had the whole yard to play in! It was so funny to watch he head right for a tree and then turn so he barely missed it at the last second.

And Asa was brave! He wandered all over the yard but he knew to hold hands in the rough and uneven places. He tried out the tire swing but that required too much coordination! He tried though, even on his belly!! He made it out broken down tree house and climbed the ramp to go up. And it's a steep ramp! He did it several times!! It made me wish the old tree house wasn't rotten. I think he would've loved to get inside!

With all that hard play, he slept until 7 this morning! That doesn't seem late but he's been getting up at 5am the last few weeks! Every morning at 5 or 5:30! He got up and his cheeks had a nice red glow from his adventures outside the day before. He was super gaggy and whiney though. He also didn't drink all of his breakfast cup or eat his bacon. I stayed home from church with him and he was super cuddlely but I didn't complain because I loved the cuddles!

At lunch, he laid his head on the table and wouldn't even eat his pudding! No bacon or pudding....clearly he wasn't feeling well! He was also pale and warm (though we didn't take his temp). He cuddled with my mom (who also didn't complain about extra snuggles!) and then came home and took a 2 hour nap. I woke him up at 5pm. He was not pale or warm but he wasn't very active either. He laid on me or in the floor for most of the evening. I hope he just had too much fun yesterday and needed a restful day today to make up for it!!!

Tuesday, March 5, 2013

Feeling better

I started an update last night but got distracted and didn't think of it again until I went to update tonight!

Asa is feeling better. He went to school today and had a good day according to his teacher. He is gunky and coughing but he is fever free so that's good. His teacher called this afternoon to set a date for his IEP. It makes my palms sweaty to think of that! That means it's close to the end of the year and time for changes again! I wish he could stay where he is for one more year and then start kindergarten. He's grown so much this year!

We also got a letter telling us that he got into the hippo therapy , or therapeutic riding, program!!! I'm excited for him! We got next Tuesday for the eval and his first lesson. If I was to write down the pros and cons of this I'd have way more cons but I'm putting my natural pessimisim aside and jumping in! It can't hurt to try it, right?!!

Friday, March 1, 2013

Chicken Pox

Just look at this pitiful Superman!! Asa has the chicken pox!!! A breakthrough case that popped up even though he had the vaccine. I noticed a few spots on him Tuesday morning but he'd be outside a while Monday afternoon. Bugs love Asa and I assumed he'd gotten a few bites. It wasn't until Wednesday even when I noticed new bites that I began to wonder what could be causing more bites to appear. Thanks to google I found out it is possible to get them even with the vaccine. There's plenty of pics to look at too! I kept him home from school Thursday just in case and called the ped. Thankfully he didn't have to be seen because I can't imagine the Petri dish that the office must be this time of year!! The doccatered with my diagnosis and said to keep him home until Monday. It's likely this is why Asa was running a fever and missed the end of last week too.

 Thankfully a case after the vaccine is usually mild and Asa's seems to be! He has about 20 pox but only bothers a few. His fever has been low and just barely noticeable over his "normal" temp of 99. The only major side effect has been his GI system. I could go into some poop talk but I'll spare you. It's clear that he's having a slow down though. His tummy also isn't emptying normally and we've had some messes because of that! His appetite is great though so I'm not worried about a regression in feeding as long as his belly kicks back in full gear soon!

 And don't worry too much about him. By this afternoon he had perked up and was playing. He did some knee walking and trampoline jumping for PT and some letters and writing on the iPad. This is a short, easy illness compared to the struggles of a few of our mito friends. Wyatt and Kendall have especially been on my heart lately! I heard someone say they can't wait for spring so their kids would be well again. I say be happy you have a spring! Families who deal with chronic or progressive illness don't get a spring. They just cling to each day!!