Mito friends

Today was the UMDF Middle Tennessee Chapter meeting at Vandy. Or as I call it, my mito friends party! I just love this group of families!! And I took my camera but didn't take a single picture! Not even one!! I was too busy talking I guess! It is only from other families that I learned about the different strollers and wheelchair options. And other parents told me about the feeding pump that I love vs. the bigger, bulkier one home health original sent out (and that I used for a year!). Other families have given me advice on feeding and formula, diapers and tubing, equipment and car seats. The doctors don't give that kind of advice, or at least they aren't very good at it!

I found this mito group just days after our diagnosis and they had a meeting just a few weeks later! I've been hooked since then.

When you have a sick child who is undiagnosed or when the questions are many but the answers are few, it is a scary time! Finding other families is like finding a treasure map. Even if the symptoms or diagnosis don't match up perfectly we all understand the frustration of searching for answers. The advice on what test to ask for and what doctors to see has been invaluable to me in my fight for Asa. I really believe if I had not found some of the great parents in my search, we'd still be without answers and a very sick little boy. Too many doctors want to take the "wait and see" approach. I guess the desperate search for answers might keep you coming back loyally to see them. I hate to think that but clinics are businesses too. That is just a fact. Maybe that is just our specialist but I've talked to several who completely discount a mother's (or father's) intuition and I've got to wonder why sometimes. It takes a strong doctor to hear a parents idea and then actually act on it. Whew, I didn't mean to be doctor bashing but while I'm at it....

When Asa had his EEG we saw the neuro who had the clinic that week. We've never seen him before. He came in and we chatted. For those of you outside the medical world, it is a pain a the rear to meet new doctors!! You have to go through the history and story over and over again. You do it for the nurse, the student, the intern and then again for the MD. Sometimes I wonder if they just keep asking the same questions to try and trip you up. But anyway, this neurologist lumped Asa's mitochondrial dysfunction as a symptom along with his hypotonia, reflux, developmental delay, etc. I told him I understood Asa's situation as a defective gene in the mitochondria that caused the hypotonia, reflux, DD, etc. He kinda just blew me off and I didn't argue cause I just wanted to get the EEG over with! That and the 6 or 7 other people in the room and his white coat kinda were intimidating. Still his words stuck with me.

That is why I'm thankful to have Dr. Koenig in our corner!! I sent her an email on Monday telling her of my confusion and asking for clarification of Asa's diagnosis. Turns out I was right, Dr. XXX was wrong! There is so much misinformation with mito and not only from us regular folks but from specialist you pay out the wazoo to see! I understand John Doe down the street giving me funny looks when I tell them about mito but it is frustrating when it comes from a specialist you wait months to see and then you get a blank look or, worse, misinformation!!

So back to the UMDF! They try so hard to get right info out there. The right info, like 1 in 4000 are born each year who will develop mito. Like mito doesn't always come with a mutation that has an acronym like MELAS or MERRF. Like mito can present in so many ways and no 2 cases are alike. Like mito doesn't always mean cognitive delays. Like you can *look* completely normal and still have mito. I could go on but I won't.

Thank goodness we have the UMDF trying to raise awareness and provide doctors with the right info. I'm thankful to have the UMDF bringing together all these families so we can learn from each other. I'm thankful the UMDF provides me with support, info and materials so I can raise awareness too. And on that note, stay tuned for some upcoming plans and ideas!! :)



Oh and I have to mention that Asa had 2 whole fish sticks at supper tonight!! I used his spoon to scoop out the fish (or fish-like stuff!) inside the crunchy. He had 2 whole fish sticks and 2 green peas, after I peeled them. Yes, I peeled little, green English peas! I was impressed he tried those! And I was giving him water to drink to clear his mouth so he wouldn't choke. A few minutes later I noticed him chewing again and got scared that he still had fish stick in his mouth. Turns out it was a Smarties he'd found that was left over from a game we'd been playing earlier! I've been down this road before and know not to start planing on eggs and bacon in the morning but I'll celebrate while I can!!! YAY!!

School, school and more school!

We had open house at Cade and Gracie's school last night. I'm so excited for both of them this year! Both classes seem great and I know both teachers. The whole school had a fun, busy, exciting vibe last night. It felt great to be sending them back!! They start again on Monday!!

And then today Asa had a graduation ceremony for Early Intervention. EI is the birth to three program here. Each state has a birth to three program and if you know of a little one who seems to be falling behind with their skills or just need peace of mind, you can get an evaluation for free. EI pays for Asa's therapy right now, after insurance. Asa has a home teacher who comes here to play with him each week too. I've been so happy with everything EI has done, we've had no problems at all. When Asa turns 3 in October he will no longer be covered under EI. That is why he will start school. Insurance doesn't pay for very much therapy at all so in October the school system will be in charge of Asa's therapy. He will go to school and get therapy there. He won't have his other therapist. The therapist who have been with him nearly his whole life! But that will be a post for another day...when I have more tissue!

So EI has a little ceremony for the kids who will turn 3 during the school year as well as those who go to the daycare they have. So Asa took a cap and gown picture a few weeks ago. He got a special graduation t-shirt. And this morning off we went to the ceremony. I was hesitant because this was just the situation he'd freak out about. But if he were to freak out then these were the people who'd understand the best! So off we went!

This is Asa trying to put on his graduation t-shirt. Obviously we need to work on his self dressing skills but he does love clothes!!!






Some kids from the daycare sang some songs. They had a little tap dance routine. There was lots of clapping and cheering. Asa was startled! But he didn't get sick!! He DID. NOT. GET. SICK!!! Maybe because I didn't feed him before we left and he had an empty tummy. I think though it was more due to the fact that he let all that excited energy out in other ways!

Have you ever held a frightened kitten? They claw and scratch and try to climb to the top of your head! That was Asa!!!! He would only stand in my lap, facing me. Each time there was clapping, he grabbed my ears, pulled my head into him and stepped all over me trying to climb onto my head! That is the only way I can describe it! He'd be fine, then there'd be clapping, then I was attacked! He yanked my glasses off 3 times and he has never taken my glasses off! Who knows what my hair looked like by the time his name was called. It was all really funny and I'd rather be climbed on than puked on any day!!!



Asa got his certificate and we got pictures with his therapists that were there. It was a fun morning.




And if each day was like this, I wouldn't be looking forward to school starting so much!



Gracie has been mothering Asa a lot lately. I did type "mothering" not "smothering" right?! There is a fine line with her! At least twice lately she has taken him to her room and tried to get him to take a nap. She has a whole system she goes through. It has never worked...until today!!! She laid him on her bottom bunk. She talked to him and rubbed him. She went and got a CD player and his bedtime CD. She sat it all up. And he went to sleep!! And then she covered him up. And then she switched blankets. And the she kissed him. And then we took pictures. Do you see were the smothering comes in yet! He did take a nap on her bed for about 20 minutes and then he rolled off the bed. YEP, off the bed. Head first. But don't worry he never hit the floor because his body was wedged between a little table and her bed! He dangled upside down for 10 seconds and he was fine! He never got sick!! I call that a pretty successful stressor filled day!!

New adventures

I've found a new and exciting blog that I've been following, Babies with iPads!!! It is just what it says, babies who use an iPad!! I had already loaded a few apps on my iPhone that were helpful for Asa but this lady has so many more ideas!!! I now have a whole page of apps just for Asa my iPhone! I got some ABA apps for free in April during autism awareness. Then I got 2 apps that make loud noises while we were in Vandy for the EEG. I tried to use them to get a startle but Asa just laughed! Now I have 2 AAC apps, Tap To Talk and MyTalk Lite. I adapted the MyTalk a little with our pics but both were free and I haven't decided if I want to pay for one and adapt it to Asa's needs. I also got (for free!) the Peek a Boo Barn and he is good at it! I may pay for the full version. Look Baby is fun but it is probably to babyish for most kids. Then I have 2 coloring and light apps, Spawn Lite and Glow Coloring. Anna taught me that if you like a pic on the screen you can take a picture of it! Fascinating!!! The app I'm most unsure about is one with pics of animals and when he touches the animal, it makes a noise. Asa isn't too crazy about animals so he really doesn't like this one at all. I'm hoping he'll grow into it though.

And I'm sure that was all completely boring and random unless you have a little one you are trying to entertain while you are on the go!

And for some fun news...Asa went on a slip and slide tonight! Some of the youth from church rolled out some wide black plastic on a hill beside the church. They used a water hose to turn it into a slip and slide! It was so much fun. Add some baby shampoo and some pool floats and you have yourself a water park ready attraction. Ok, maybe not that good but it was fun! As they finished up I took Cade and Gracie over cause I knew they'd love it and they did!! I decided to let Asa ride while I sat on a floaty. He laughed and kicked and splashed in the water at the bottom! This was the first time Asa has ever even been down a slide. Can you believe that! I don't know why I never tried it before. We may have a new adventure tomorrow on the swingset, unless it is hot and humid again!

Oh and it is popsicle week at the therapy center so Cade and Asa both left with a green popsicle! Asa could barely wait to get to the car and get a bib on. It did keep him cool since the car was so hot though! Now, how can I keep popsicles frozen in the car while we do all our other errands?!

Oh and I started Christmas shopping today! Yay!! I several things checked off my list. I had Cade with me so I was limited on what I could get for my own kids!! I've taken the first step though so I feel better! Last year I waited much too long to start and was panicking when I hadn't finished by Dec. 1st. I have no plans to wait that long this year!!