BREAKING NEWS......READ ALL ABOUT IT!!!!

Did the headline get your attention?! I hope so because I have a huge......HUGE.....announcement! I feel like the blog takes a back seat to Facebook. I often post pics or quick updates to FB before I post a blog about it. Today I saved some good news for the blog......and the dozen or so folks I saw this afternoon! I don't have that much restraint people!!!!

Asa had his first ESY (Extended School Year) physical therapy today. Asa qualified for summer school but it would be more trouble than it's worth so I opted to just have his therapies. They are done at the therapy center where he received all his therapy from birth-3. He gets to see some of the folks that worked around him all those years.

So today was his first PT session. Melissa had never seen him before and only saw him becaus ethe regular PT was on vacation this week. I almost refused the therapy of summer school too because Asa is so nervous around strangers and last year he was just getting comfortable when the session was over! Asa has done great going right back with the therapist though!

When I picked him up this afternoon the PT asked if Asa takes independent steps at home. "Uuuuummmm, no. Why did he take steps for you?" was my reply?!!!! Guess what? He DID walk for her!!!!!! She stood Asa up facing her and held him by his shoulders. Her goal was to let go and see how long he could bear weight on his own. When she let go though, Asa walked towards her!!!!! Awesome!!

We got home and I tried reenacting it. I stood him facing me, held him by his shoulders and then let him go and he walked to me! He repeated it several times! I couldn't wait for Barry to get home from work! He did it for Barry too! He is very mad and freaked about being on his own (and he squeals and squawks when you pick him up just so you know he hates it) but he CAN do it! He can walk!!!!! He's wised up tonight though and will sit down when I hold onto his shoulders! He's too smart!

Anna has video but I'll try to make a better one tomorrow! It's amazing!!! God is so good!

Memorial Day Weekend

We started off Memorial Day Weekend like any other Sunday. My mom made lunch for my grandparents, my family and my brother's family. We spent the afternoon on the front porch......with fans blowing full steam and sprinklers in the yard!

I didn't prompt Asa to pose like Anna at all!

Anna and Cade made ice cream cones but I told them not to let Asa see them so they were sneaking and eating them!

My brother and a bunch of kids camped out at a creek that runs on my parent's farm. The rest of us were wimps and we enjoyed the cookout and camp fire but slept in our own beds! Monday morning we headed back for breakfast**. I though Asa would walk around the camp or easier terrain but he headed straight for the cotton field! He did take a big fall but I helped him back up, cleaned the dirt out of his teeth and he walked on!

After a while my daddy carried him. Asa left that hat on for a while too!

Asa liked swinging in the hammock with a buddy. He's very relaxed! He didn't like to share though and would fuss when we tried to make him get out!

**My brother is a pro camper! He made pancakes, spicy sausage, regular sausage, bacon, fried eggs and coffee on a camp fire! It was YUMMY!

Pic dump

We don't use Asa's feeding tube for feeds anymore (unless his sick and gets fluids) but at night he takes a med that has to be diluted into a few ounces of water. Asa's belly is squally pretty full at night and we often have to tube the meds since he is already gagging. Some nights though when we get the the ready he decides to drink from the syringe!!!!

Asa likes to sit with his legs propped up! He was cleaning the iPad with a tissue. Seriously this kept him busy for a while!

Asa loves glasses!!!! I thought we were gonna have to buy some from this $4 bin! Thankfully we were able to distract him and leave!

I bought a baby gate play yard for the dogs. Turns out Asa loves it!!!! He pulled up and sat down on his own! He walked all around the perimeter. He opened and closed the gate! Once the dog came over to check it out and Asa pushed her out of the way and shut the door!

Speaking of walking..... Asa figured out the game and will NOT walk anymore! He sits down as soon as you get him into position! Smarty pants! Oh well, it was fun for a few times! We know he can do it so now we have to change our game again!

The McNair Family

You may not realize it at first glance but this life with Asa is a blessed journey! Milestones that most kids meet with little effort take Asa sooooo long to master. Things like rolling over, sitting up, eating, walking, running. Most kids just zoom through it all and parents look back and wonder where the time went! Not here though! We've watched Asa develop in a sort of slow motion. Like watching a rose open in time lapse video. Miracle in slow motion!

Another blessing has been the people we've met. From the teachers, therapist, nurses, doctors, friends that are local to the world of people the Internet has opened up to us. I've "met" some of the most faithful, hardest working, compassionate watcher of slow motion miracles of their own! One such person is Heather McNair and her family.

The McNair's live in Texas and were some of the first mito people I met online. They have 3 teenagers with mito. Between all 3 kids Heather has gotten an unofficial degree in all things mito! More impressive than all her mito knowledge is her kindness, generosity and encouragement to us mito newbies! She is quick to pass along helpful info and encouragement. And the kids take after their Moma! The whole family is very involved in Wish Night that raises money for their Make A Wish organization. The oldest gets to be a camp counselor at a mito camp while the younger girls get to be participants. In my time as a Facebook friend with the family I've not heard complaints or whines or woes as you might expect with a family who has so many issues and appointments and test. There has been tons of smiles, laughter and jokes though!

Last week the family participated in Wish Night to raise money for MAW. The next day they were on hand as the local hospital dedicated a "Teen Room" hobnobbing with celebs. In an instant their whole world would change though! Father and husband, Michael, was hit and critically injured in a bicycling accident. His list of injuries is scary....lacerated spleen, punctured lung, many broken bones including his neck, lower back, hip, pelvis and all the ribs on his left side. His spinal cord was spared and because of his helmet his brain scan looked good too. He is currently in stable but crital condition and they are keeping him sedated. He is showing signs of infection and blood clots though so he will soon undergo bedside surgery to put in a "clot catcher" and a trach. As you can imagine this recovery is going to be long and difficult! Let me just copy and paste a recent FB update though so you can really get to "know" this family for yourself......

"

Update on the kids and I.....all I can say is that we are all clearly being carried by your prayers. The kids are okay, all three coping in their own way, but really okay. Tonight we got to talk....really talk...for the first time since the accident. We talked about some of what's going on with their dad right now, and then discussed how we need to take him his pork pie (hat) as soon as we can, and laughed as we shared stories and thoughts on when he comes home. We talked about how Chance is "scheduling" his break down in a few weeks (only my son schedules something like that....and I love him for it), and how the girls are following their dads advice to "Litha"...leave it the hell alone, when it comes to worrying about him. They seem to be feeling the same peace that is so profoundly enveloping me. The peace that comes when so many are lifting us in spirit. I am hanging in there....tired and sad to be a witness to the ins and outs of each day in ICU...but sleep is coming at least a little easier each night, and getting food in is getting a little better each day. Mornings are just hard, but I am hoping that starts to ease soon too. But while of that is there, the love and support of so many has allowed me to concentrate on Michael, to know that we will get through this, and allows for so much peace in this process. It's early in the game, and I know there will be good days and not so good days, but also that we are not in this alone. We are so incredibly blessed. Thank you from the bottom of my heart. You all are amazing!!"

I personally didn't know anything about Michael. I wasn't aware that he was an avid cyclist, commuting over a hundred miles a week on bike. I didn't know he was such a leader and advocate in the Dallas area for bicycling safety and awareness. By reading some of the articles posted in cycling magazines though, it seems that he is just as awesome as his wife! Here's just a sample:

http://frontburner.dmagazine.com/2012/05/21/michael-mcnair-bicycling-advocate-seriously-injured-in-crash/

Please keep the McNair family in your prayers as they endure this long recovery. Pray for the doctors and nurses involved in his care. Pray for quick healing and a 100% recovery! If you feel moved to help support the family financially there is a ChipIn fund set up by a friend. Every prayer and penny is needed, deserved and appreciated!

Thank you in advance, friends, and don't take one single moment for granted!

Update Bulletpoints

I should've updated a few times over but we've been so busy and then I'm crashing after I put Asa to bed!

-Friday, May 11, 20112, 8:30am. I had a meeting with the director of special education. I was asking for a one-on-one aide for Asa next school year. I'm concerned that he will have many more panic attacks, over heating episodes and general sickness without someone watching for warning signs that he needs to rest. The schoolth is old and hot, he works himself to exhaustion and he'll be going full days making him more tired and easily overstimulated and episode prone. He also needs a lot of physical help just getting around the room and school. On one hand I don't want someone hovering because Asa will take advantage of that but on the other hand being 1 of 10 kids with a teacher and aide, he's bound to require a lot of time and attention. So I made my presentation for him an aide. I felt like I was listened to and that she was concerned. The end result was that there will be an extra aide at the school next year anyway. This aide will be introduced to Asa and spend time with him to get comfortable with him and him with her. She will not be Asa's aide but an extra pair of hands at the school. I think this will be a great compromise and if it doesn't work out the director will know who I am the next time I visit!

I think the aide will work out because Asa does tend to take the easy way out and use people. If he had a person sitting beside him all day he'd probably never move, just squeal and point! I'm not too concerned that she won't be in his room full time either. Asa has a way of getting people to do what he wants them to do. In his class now there is almost always a floating aide or a volunteer who is at his side. He just has a way of getting people to help him out. I predict he'll do the same next year. We will be revisiting the situation after he starts school and we see his class assignment and test the waters. As a wise woman once said, this is my rest between contractions! I'll adjust my fight as labor begins in August!

-Friday, May 11, 2012, 10am-3pm-I got to help out at Gracie and Cade's Spring Bash at school. They had water slides, bouncy houses, inflatable slides, big tricycles, lots of fun. I just watched the first part of the day but I helped in the concessions the second half. I really loved being there! Before Asa was born I did all the field trips and fun school days. I really thought I'd be a permanent fixture once Gracie started kindergarten but we had Asa instead! As one teacher said, God had other plans for me! Yes He did but I miss the school stuff!

-Saturday, May 12 2012, 11am- We have some foxes that have a den in the woods beside our house. We've enjoyed watching them play and roam. Saturday morning I found one of the baby foxes dead near the road. At least I thought it was dead! We brought it back to the shed but it was very hurt. Late Sunday it roused up and we took it to the tree line where we saw them play mostly. The Moma came after him and helped him back to the woods. This afternoon the buzzards started flying around so barry went to check and he was dead. At least he died near his Moma and not beside the road!

-Sunday, May 13 2012-Mother's Day! They didint know it but I celebrated Mother's Day last weekend! Last Saturday anna kept Asa so we could go to Gracie's early, but hot, ball game. After the game barry kept Asa so that Anna and I could go for a girls day....Gracie didn't want to join us. We had fun window shopping. Well, Anna had fun and I like to see her have fun so it was all good! I'd rather bond over a nice long nap but that's not up her alley! Then last Sunday after church I went to a shower and got home just in time to go see Courageous playing at church! It was a weekend of barely even changing a diaper, making a cup, doing meds or other Asa chores. I was around him long enough for hugs, kisses, bedtime snuggles, fun stuff and that's about it! That is a great Mother's Day to me! Keep the flowers, jewelry, candy and cards. Give me a day of no responsibilities and plenty of naps and I'm spoiled rotten! They just did it a weekend earlier than the calendar says!

I still got plenty spoiled the official holiday too. Moma helped them sneak and get me a bracelet I had seen and wanted. I was very surprised!!! I also got a nap. Best of all I got to cook lunch for my Moma and Barry's Moma. My Moma cooks lunch for us every single Sunday! Most times there are 16 folks there! This Sunday I cooked. I even made a new desert.....a Tomboy cake. I cheated on my version but it was yummy! I'll do pics later this is just bullet points remember?!!

I think that about catches us up.....minus pics from the weekend but I'll do a seperate picture dumping post later! :-)

First steps!

Asa took his first steps completely unassisted yesterday!!!! Finally, at 4years 7 months old, he took 2 or 3 steps.....all alone! It was all unprompted too! Asa always does his best work when we aren't paying attention to him!

I was dropping him off at school yesterday. I propped him against a bookshelf with puzzles while I visited with the teachers. There was 4 of us standing near by talking about food and recipes. Asa had been kinda bouncing away from the edge but wouldn't come off the shelf. Mid sentence I looked over at him just in time to see him take 2 or 3 steps away from the shelf and sit/fall down on his bottom!!!! I looked up and one of the assistants had seen him too! We were both wide eyes and amazed! I tried to get him to try again but he wouldn't....of course!

Not too long ago just the leaning against the shelf would have freaked him out. And a hard sit onto the floor would have too!

Maybe I can get him on camera next time!! Don't count on it though! Lol

Pics

I picked Asa up from school yesterday and he was self feeding a cupcake! And enjoying it! He was having pineapple today! Gotta love new foods!

This is Gwen. She hangs out with Asa.....a lot! She says that I have him spoiled but I say he has HER wrapped around his finger. Seriously, she can take a hard line with him and he shapes up!

Asa has started picking up his walker and taking several steps with all 4 wheels off the ground. I got a few seconds of it here but you have to catch him right at the beginning for the best shot. And you can hear Gwen cheering him on in the background!

He has also started walking while holding one hand. His other hand still has to hold something so he holds his booty!

We have to dilute Asa's Zoloft in water. He takes it at night and he usually won't drink it so we tube it. The last few days he's taken the syringe and drank it down though! It cracks me up! Tonight he drank all but the last 10ccs and then pulled up his shirt for me to tube the rest! I didn't tube him but he's a smart boy!!!

Climbing?!

This was the scene I watched unfold when I picked Asa up from school today. He was sitting with the class at the table having a snack. As they finished their snacks the kids split up to go play. Asa scooted his little red chair back from the table several feet. Then he stood up using the cubbies for support!! He did a little bit of cruising before his teacher reminded me to take pictures!

Apparently, pulling to stand and cruising weren't enough so Asa decided to try and climb into the cubbies! This dance went on for a few tries!

Not having much success in the turning around and sitting department Asa began looking for help.

Yep, his hand is blurry because he's waving the "all done" sign.

Receiving no help from the gawkers and paparazzi around him, Asa decided he'd just have to shuffle back to his seat on his own.

I didn't get any pics of him sitting because a friend came to sit beside him in the cubby and I didn't want to use his pic without permission. I guess Asa will have to conquer cubby climbing another day. I should have put that in his IEP!

And you know how a kid sometimes falls in love with a certain toy or movie and you'll borrow it for a day just so the child will leave without drama?! This rarely happens with Asa because he has little attachment for toys, however it did happen at school one day! We had to borrow Asa's teacher's empty pill holder!! He found it on her desk or in a drawer and loved opening and closing the tops. He was determined that he wasn't putting it down and even tried to walk down the hall holding it and his walker! I was NOT allowed hold it! I'd offer and he'd pull it away from me, holding it high in the air......much more preferred way of voicing his opposition that the squeals he usually does. I finally attached it to the walker with a carabiner and he walked happily to the van with his pill sorter dangling from his walker! Funny thing though, once we got home the pill sorter lost all it's magic and was quickly discarded for other random household objects! Thankfully there was no tears when we returned it today. Anna took this pic in the van, on the way home, as I said "do you love you sorter?"! His hand is at his face in a "hug" motion. Pretty smart guy......well other than having a pill sorter as a BFF!

IEP fun

We had Asa's IEP today. An IEP is an education plan for Asa. These always make me nervous. There's so much formality in it all. I know this is to protect everyone but I'd so much rather just chat and do what needs to be done for Asa. The paperwork and witnesses and 9 signatures on a page makes me afraid ill say something wrong. I've never felt like Asa's been passed over or cheated and I believe he is certainly cared for so it should be easy peasy! Even still, it took 2 hours!

It's like when you get a mortgage. You love the house and you don't mind the payment but something about sitting behind the big desk signing a stack of papers with language you can't begin to completely decipher, well you start to wonder if you are buying a house or taking on the national debt! And that's my fear with the IEP! The school is great, the teachers are great, the therapy is great but the paperwork is a booger! Thankfully it's all in my head and I only bring the stress on myself! I do feel that I could take out a pack of wild animals for Asa but thankfully Asa's team is more like a pack of cuddlely puppies! :)

Another tough part of the IEP is hearing how delayed Asa is. Of course it's necessary but not fun! And everyone in the room just bragged about how much progress he's made but it doesn't come across on the testing. So Here's the dirty:
-gross motor-9 month old
-fine motor-20 months old
-social/emotional behavior-24 months old
-communication-16 months old
-cognitive processing-16 month old
-language (expressive)-2-4 month old
-language (receptive)-20 month old
-pre-vocational skills-8 out of 31 items tested
So, yep, at best my 4 1/2 year old has the skills of a 2 year old! Fortunately, he is about the size of a 2 year old so he could play it that way. Too bad he couldn't just hang out in a nice daycare instead of starting PreK next year. And we won't even get into K the next year! I can't breath again!

We cleared up some ends that were loose. He wasn't getting the best support when sitting. He can sit in a regular chair but like us sitting on the bleachers to watch a ball game, we are more comfortable with good support. We also went over his heat intolerance. His school is old and HOT! The AC is on or off, no thermostat. We documented the need for him to be cool and there are several rooms that are now deemed cooling rooms for him. The school has an awesome adaptive playground but I told them he probably won't be able to use it for the rest of the year. Today was 83 and humid. So sad because he loves the playground! I also documented that as we transition to full day, they will probably see more of the anxiety and meltdowns we see when he's tired, over worked or over heated! I think they are prepared but maybe they won't need the the info!

One of my big goals was to change his AT (Assistive technology) plan. He was evaled a while ago and definitely needs some technology to communicate. The proof is in the test that shows he can only make sounds like a 2-4 month old but can identify pics and follow directions like a 12-14 month old. He's got a lot more in his head than what he can get out. We started using the PECS system. It was good in small form but to be used widely he'd have to carry a book of pics around and flip through to choose a choice. Too much gross and fine motor work! I was ready to beg for an iPad but the AT consultant was all aboard from the get go! His IEP now includes an iPad for him with GoTalk ready for him to use!! I also requested he get 30 min. a week of dedicated computer work with an AT consultant. He was previously getting 30 mins every other week so we doubled his computer time!

Another huge goal was for me to get him a one-on-one assistant. His first class was so small that he basically had one-on-one help. This new class is still small (5 kids for 2 adults) but its half day and next year will be full day and larger classes. I'm told this year those classes had 7-8 kids. So more kids, more hours, more expectations, more work is gonna equal a greater need for help. He needs hand over hand or direct instruction in nearly all situations. He needs help getting to circle time. If he doesn't have direct contact then he is quickly distracted from circle time and without help he will rarely mimic any songs or hand motions to songs. Without someone making him, he'd probably be happy to just sit alone and color. And then the diaper situation. Asa isn't a quick change but a full on ordeal! The most I can hope for is that he will help pick his bottom up when I put his pants back on!
More importantly than all that physical need I feel he needs an extra close watch so he doesn't overheat, over work, get stressed or get dehydrated during the day. We have been on such a good run but have had many days where he runs a low grade fever and no other symptoms. The assumption is that his body is stressed is trying to reset itself. He's had a couple of episodes of over heating, once getting so hot that he puked and couldn't stand up until he had rested and cooled off. He has had to be taken to a coolor room on a couple of different occasions and thankfully the school had staff and his class is small enough to pull someone out for him. How long will that last though. And if he's gotten to the point that he's in a meltdown it's too late. He's missed instruction time, caused a scene and experienced horrible physical symptoms. The goal should be to prevent all this by constantly monitoring him, watching his behavior, skin color, muscle tone and the GI stuff. It's a balancing act to keep this boy going?!

All that to say that the principal said I need to take this proposal to our director of special education. The school doesn't issue the aides. So I'll gather more info and go that route. And I could be wrong and he could go in seamlessly but many days just the 2 1/2-3 hours a day is enough to have in meltdown mode at home! If anyone has any tips I'd love to hear them. I'd also be interested to know if I'm being unreasonable wanting an aide. I guess everybody would love their own aide so maybe he doesn't even really need one.


So, any thought?