Shopping day!

Boy, what a day!!! Asa got up this morning and was so......something! He was more vocal, grunting and squeaking. A lot! He was also kicking and bouncy and just energetic. It was all very unusual and exciting!! In town today he fussed until I let him walk in Target! He went 2 rows. Then while we were checking out in Walmart Anna walked him again. He drank 2 little cups of tea and ate several bites of hamburger at lunch.  

As good as the good was the bad was about as bad! The walking at Target did him in and he started freaking out. I guess he was tired and then went into sensory overload. He insisted on being held and started the sweating and gagging stuff. We took a break and got an Icee and pretzel in the cafe. The kids sat down while I ordered. They sat right next to the drink machine....with ice!!!! Everytime someone got a drink Asa lost it. The Starbucks blender set him off. Poor guy was sooooo jumpy! He startled so bad once that he knocked my cookie off the table!  He also screamed most of the way home and didn't stop once we got home. I finally laid down with him and he went right to sleep. I wish he had a way to tell us what he needs. The meltdowns and trantrums are no fun! He had a minor screaming fit at McDs too that got a few looks but at that point I just figured people could sit somewhere else, we were there first!

The sad part is that this day was a special shopping trip for the big kids. They all got giftcards for Christmas and had waited patiently to go shopping. I had put them off until today so the weather would be better for Asa. And the big guys were great. They took turns shopping and didn't argue (too much!). We even went to 4 different stores looking for clothes Anna wanted! All of the fussing with Asa made me short with them though. I tried to be patient and distract Asa but that only works so long. I guess all in all they had a good day and most everybody got what they wanted.....Anna still didn't get any clothes! 

I shouldn't be complaining though! A few months ago I would have never tried a day of shopping with all 4 of them. And Asa would have had a feeding pump not eating burgers. And we a several little friends who are inpatient right now with concerning issues and no clear answers. At least my family was all together, even if it wasn't as easy I'd like. We are blessed!! 

The Day After

I think the true judge of Christmas is the day after. There should be no "I'm bored" but no toys discarded in the corner either! That is the day after we've had today! I'm glad it was Sunday and Barry was off work again. We've had a great long 4 days of family time. We are blessed that our families live very close so we haven't had the added hustle and bustle of travel and packing. For that I'm very thankful!!! This has been one of the most relaxed holidays ever!!

The kids each got one present that they really, really wanted......and that is it! Well they did get one little toy, pjs and an ornament. They got some fun stuff and gift cards from the rest of our family but we didn't end up with so much stuff that they couldn't play with it all. My mom gets sick when we have so much food left over after a holiday, that's how I feel about gifts. Last year we tried to spend less but get lots of stuff. I thought the kids would be disappointed if they didn't have a ton of boxes under the tree. Let's just say I put most of that stuff in a garage sale by spring! Not this year! Our tree looked pretty bare and I didn't even take a picture of it like I usually do, just in case my plan backfired! I feel so blessed that we could get them all one surprise they dreamed about. I'm proud of myself for not picking up everything I saw on the shelves!! Gracie did dream of Zhu-Zhu pets and she got one from us and one from my mom. I figure even if she tires of it next week Asa or the cat will like them!

Anna got a laptop. It is hard to surprise a teenager but I think we may have pulled it off! Maybe!! Since we have dial up she doesn't have internet in her room and that makes me happy!

Cade got a bigger 4 wheeler. Gracie got his hand-me-down one with great excitement! They have been riding several times even though it is COLD!!!

Gracie got an iPod touch. She wanted a DSi even though she has a DS and never plays it. I thought she'd be able to grow into an iPod and we won't have to worry about losing games. She loves music and has played music as much as games! I was worried she'd see a tiny iPod and not realize the money, just the size but she hasn't complained one time!!!

Asa got a little power wheels car! I was originally thinking of a recliner but then I sat him in a power wheels at Toys R Us and he loved it!! He went right for the go button!!! It has a tall parent handle and we've used it to go round and round in the house!!! We thought this might be a mini trial for a power chair. Turns out Asa likes to run over stuff so a power chair may be far off!! He did love the freedom though!

See, they all got one big, amazing gift and are VERY happy!!! I love it! I just hope they realize this may not happen every year!!!

I'm ready to enjoy this next week! The kids are out of school, we have no appointments and nowhere to be! We will have to spend one day giving everyone a chance to spend those giftcards! Gracie is talking about getting new bedding for her bed! We reorganized the upstairs room today and tomorrow will be Asa's room! I think I have a plan for Asa's bed situation that doesn't involve buying anything new!

Asa and I are both feeling better! He slept all night the last 2 nights! And yes, I realize I just shot myself in the foot by saying that! I spent all day Christmas sneezing my head off and feeling like I'd been hit by a truck! Today my head was sooo stopped up but after alot of meds I finally feel "normal" again! I think Asa's meds made him a mellow fellow yesterday! He handled way more stimulation that I thought he'd be able to! I wish I knew what it was so I could ask for more!!! Then again maybe it wasn't the meds at all but my Christmas prayers being answered!!!

Merry CHRISTmas

It's 9:00pm on Christmas Eve. Sadly, I'm the only creature at our house who want to NOT be scurring!! Cade and Gracie ate excited and too bouncy for bed. Asa doesn't feel good and between the clinginess and meds can't/won't go to sleep. Anna is a teenager and we all remeber the days we could stay up all night and not be affected the next day! 

I, on the other hand, have been fighting midnight battles with Asa! He usually wins and I end up dozing with him in my arms in the recliner most of the night. I can get him back to sleep but if I lay him down he wakes up. I've resorted to trying to climb into the crib and camping out in his floor. I think he'll be in a big boy bed before long!!! 

If you aren't my Facebook friend you have missed the fact that Asa is sick. He stated running a low grade fever on Wednesday. He puked and I thought it must be a virus. He woke up ready to go on Thursday though so I thought it must have been his slow motility. Last night he woke up at 1am and had a terrible cough. I took him to the walk in clinic today since it'd be Sunday afternoon before I could get seen again outside of the ER. Thankfully his lungs ate clear and it is just an upper respiratory infection. He got meds so hopefully we have nipped this in the bud! 

I won't complain about a little bug. We have too many friends that are really struggling right now. Many will be celebrating Christmas in the hospital or trying desperately to stay out of the hospital! Our plans may not be going according to plans but we are together!

As we celebrate the birth of our Savior I'm thankful that God sent His only Son to this world as a sacrifice for my sins. He came as a baby, lived a perfect life, died a cruel death and rose again so that I can have a way to heaven and eternal life. That is the reason for the season! I do love seeing the joy in my kids eyes and the food and visiting with family but I celebrate becuse of the birth of my Savior!!!!   

Big Day!!

Asa had feeding therapy today. Turns out it was his last feeding therapy!!! We will have a re-eval in 3 months just to be sure he is still on track. Of course if it is going amazingly we can cancel that too! I can't believe he was discharged from feeding therapy!!!

Don't get the wrong idea, he is still not your typical eater. He can self feed dry, bite size stuff. He can't use a fork or spoon. He can handle many textures and tastes. He has a good swallow. He has a very weak bite and can't even bite through a cracker. Still the lick, suck and mush technique has gotten him very far! So while we have a long way to go, we've also come a long way!!! Most of his oral issues are now sensory and fine motor issues that his OT will work on.

I'll miss Asa's speech/feeding therapist so much! She's had him since he was only a few months old and when he had the NG tube and we wanted to avoid the G tube. She has more of a mental health therapist for me than just a therapist for Asa! Wonder if she could back bill insurance for that!!!

When we saw Dr. Koenig in June, I was almost ready to give up on feeding Asa. It seemed like we were chasing our tails! We'd get him to eat some applesauce and then he'd stop eating all together. It was more than frustrating to go up and down so often. Now just 6 months later we are holding off on feeding therapy! God is truly good!!! In all of this we have remained patient (mostly) and had faith that God will do things in His own perfect time! It was just His time for Asa to eat. It may all fall apart tomorrow but tonight I sing His praises and give thanks for this milestone we get to savor!

A sweet milestone

I am updating from the computer. The real computer, not emailing from my phone! Our desktop played out and we got a laptop. The keyboard locked up after 4 days! Seriously, it just locked up!!! I resisted the urge to blame Barry and Anna cause they picked it out while Asa and I played in the toy store. Turns out it was likely a crazy glitch that had nothing to do with the computer or operator error! So here we go with the replacement. I guess the newness has worn off cause I haven't had to fight anyone to get on here tonight. It is much easier to blog from a real computer though I LOVE my phone!!!!

I'm blogging mainly to tell you of a huge milestone! Asa has been sooooo good today! I know that may not typically be news worthy but here it is!!!! Asa doesn't self soothe, self play or even sit without entertainment very often! He is high maintenance. I accept most of this blame but you gotta do what you gotta do when he can't sit, reach, activate toys, etc on his own. By the time he got the skills he developed a huge dependency on someone sitting beside him and entertaining him.

Today though Asa lay in the floor near the Christmas tree and played for nearly an hour and I got to take a shower without him howling for me! And this afternoon he played upstairs with Cade and Gracie for a while! Tonight he has played Lego's with Cade for nearly an hour. I know a picture can't capture the bliss of the moment so instead of interrupting them I just watched and soaked it all in!

Asa dumped the whole bucket out while Cade was building. Then Asa would pick up a couple and go "mmmmmmm" and "uhuhuhuh", which are basically his only happy sounds! He banged a couple together and then would hold them up like he'd done something amazing. He'd lean in to give Cade a head hug. He watched Cade like a hawk! And Cade just played right on! They were adorable! Just so normal. Except a normal 3 year old would have probably been chewing all over the Legos. I resisted the urge to get all therapist and teachery on Asa and turn the play time into some type of work. I didn't cheer him on. I didn't take pics or get in his face. I just sat quietly across the room watching the moment! Sometimes that all you need!

I hope this a new way Asa will choose to play. One of his IEP goals is for him to learn to play alone and with other kids! Maybe this one is kicking in already!!!

Another plus of using the real computer......spell check! You're welcome!!

Weekend Recap

Christmas light tour part 2 didn't go as well as last weekend! Asa went to sleep on our way to the lights. When he woke up he was mildly impressed but soon turned into a sick, fussy boy! We aborted all other celebration plans and headed home! Asa is usually not a night owl but I'm glad we made the long trip last weekend! I'm grateful that he does make out past dark on some nights!

Saturday night, Barry and I went to a Christmas party at church....without kids! How fun! I really did have a good time and Asa had a good night at his DeeDee's house! The other kids too but they always have a good time there. Asa is just beginning to like being on the go!

Today was worship day! We had breakfast at church this morning and family Sunday School. I really like it when we do this. I love our church family and feel so loved by them! It was a good day!

Asa is still eating so good. Yesterday he ate a whole sausage ball at breakfast and one at lunch! That is a big quantity for him! He had a whole chocolate chip mini muffin today! He has been so eager to eat! We've had a couple of mornings where he isn't ready for breakfast until much later. This keeps him pretty cranky until we find something he'll eat. I hope this isn't a downward slip!

Oh and his twice a day miralax seems to be working out!!!! I've changed 4 diapers tonight! And those wonderful diapers he gets from insurance are horrible at keeping anything in!!!! I won't complain though because I know too many families with much bigger kids who can't potty train and insurance considers diapers a "convenience item"! Really, a medically fragile 10 year old who is completely dependant is denied diapers because they are a just a convenience! Crazy!!! And really I'm just glad we are finally seeing poop, even if I have to wash tons of clothes!

I *HEART* school

Asa's school that is!! I was so worried just a few months ago when we first started planning for Asa to start school. Asa has so many little issues that if you don't know what to watch for you'll be sorry before you know it! I can't believe it's only been 2 months since he started school and his teachers have him pegged! They've only had to drain his tummy 2 times! Wish I could say the same thing!

There was 2 schools we could choose from when we started his IEP. One class was very much like a typical preschool class. Busy kids, playing with toys, various levels of behavioral and developmental needs but I didn't see any as physically involved as Asa. Doesn't mean the weren't there, I just didn't see them at the time I toured. The second school had a "medically fragile" class. I almost pictured a miniture hospital with a term like that but it wasn't at all! There were gait trainers, therapy mats, touch screen computers, supportive seating, switch toys, etc in the room! It felt like a therapy center and it felt right for Asa!

We chose the second class and right now there is only one other student in the class with a teacher and an aide. In January another 3 year old will join them. That's probably why they know Asa so well, they have pleny of attention to give him!

He goes at least 3 days a week and sometimes on Friday too. He goes from 12-3, but I usually pick him up at 2 so I can get to Anna's school by 2:30. He has therapy 3 days a week and I'd like to send him on Friday but gas is getting so high that he isn't going tomorrow. And that brings me to my thoughts of loving his school today!

I wonder if I've made the right choices for Asa. Have I underestimated him and his skills? He is changing and growing and adapting so quickly that I always worry if I'm holding him back. There is a fine line between pushing Asa's limits and pushing him over the edge!! How much noise and excitement can he take? How much therapy can he handle at once? It is a fine line! As we talked about the gas and buses. His teachers reassured me that I was right and Asa's sensory and fatigue issues wouldn't allow him to ride the bus. He just wouldn't be able to handle it! He hates the sight of the bus. He trembles when he sees the bus stop at the end of our driveway. Then there is the fact that we live 30 minutes from the school, out in the boonies! If that's 30 minutes in my van just imagine how long it is on a bus picking up other kids!  Did I mention that he tires out so easily that it isn't unusual for him to take a nap in the therapy swing? And he is only there 2 to 2 1/2 hours!

All this sensory talk led us to talk about the classes. His teachers also can't imagine how he'd handle a more typical classroom. He has done better than I could have imagined but I'm not sure he could handle the other room! They said when the computer or maintainance people come in he gets unhappy. Until this week when the nurse came in for the other little girl, he get bothered. They take him out in the halls and sometimes he can't handle the other kids walking down the hall in their little lines. Other times he does well. The good part is that his teachers get this! They are learning his cues! We'd all call this year a success if we just got to the point that he can handle school! Learning songs and colors will be icing on the cake!

But he is learning! He signs "more" and "please" often. He signs "school" and waves bye again! He seems excited to go to school. He doesn't necessarily get excited to get in the room but he gets excited to be "going"!!

I'm just so glad that he has this class and these teachers! I'm so thankful that someone else gets to play with him for a few hours a day!! We are still learning to adjust at home. The fatigue and transitions still aren't perfect but we are trying! A bath worked well for him yesterday but not so much me! We'll probably get a good plan about the time he is out for Christmas break!

Yep, I love Asa's school and teachers!

Asa update

I feel like I do little snippets of our lives here but I need to do
full Asa update now. I use the blog to go back and find his milestones
and appts and meds. So this will be as much for me as any one else!
We've been having a great few months and it really needs to be
documented!

Asa isn't on any of the mito supplements. None. We ran out of Q10 in
the late summer and I just didn't order more. We were buying school
supplies and the Q10 is pricey. I intended to buy it once Asa got a
SSI check. He doesn't get one every month so it ended up being awhile
before he got a check. By that time I'd not seen a decline in his
skills so I just didn't order more. It is hard to pay that much for
something and not see any changes! By October I'd stopped giving the
Carnitor. The stinky smell was AWFUL!!! I have theory that the Q10
helped keep that at bay and once the Q10 was dropped the smell broke
through! Yuck!!!

While I didn't notice a change in Asa's tone or endurance he did start
to balance terrible constipation!! Im not sure if that is supplement
related or a coincident. His diet had not changed at all, 4 cups of
Pedisure a day! For a kid who would go several times a day to start
going once every couple of days was awful! The poop was small and
hard, his bottom was bleeding, he was puking daily because nothing was
moving! Not fun!!! If the Carnitor smell is a bad side effect, the
increased poop would have been nice! Too bad we weren't getting that
side effect.

We added a daily dose of Miralax, extra fluids, tried fiber. Still no
poop! While this would be uncomfortable for anyone, for Asa is also
meant his delayed gastric emptying was even slower, he puked even more
and his appetite was even worse! A huge step backwards!

The new GI plan was to use enemas and suppositories (which we'd
already done to start things moving) to get him going again. By now we
were a good 6 weeks into the constipation and he'd started trying to
"hold" the poop because he knew it would hurt. We don't want that bad
habit to start! Once we had him cleaned out, we started giving him 2
full doses of Miralax a day. He still isn't back to his consistant
poop schedule that I took for granted before, but he is not all backed
up. Occasionally I try to hold off on dose of the Miralax but he
starts having trouble again.

We also added Zantac to his reflux meds. He takes a Prevacid solutab
in the morning and Reglan at night. We can do Reglan 3 times a day but
the neurological side effects scare me! We added the Zantac as a quick
action med when he has his startle episodes. I think it may be
helping! He was very gaggy and drooly this afternoon. Once I gave him
the Zantac it stopped and he asked for food!

And that brings us to the eating update!!! In the last month he has
just bloomed with his eating! He is excited when we sit down to eat.
He wants our food. He grabs at our food, not just the plates and
forks! He is excepting nearly all textures and tastes! He's had
pinches of burgers, rice and gravy, spaghetti, pancakes, scrambled
eggs, sausage, brocolli, spaghetti squash! It is really amazing!!! He
is eating tiny amounts but he is refusing very little! I'm amazed!!!
We are usually only giving him 3 cups of Pedisure a day and the other
calories are from foods and the added juice. He also drinks water
willingly!!! I love it!!!

He has finally picked up on some signs! Finally!!! He signs "more"
mostly appropriately. Sometimes he throws it out because it is the one
he knows and he is frustrated so he goes to the sign he knows the
best. He signs "more, please" when we are feeding him. He signs "all
done" but I wished he used it more on his own instead of going
straight for the all done squeal! He puts his fingers to his lips for
"eat" when I ask if he is hungry. We are working on "no" and he has
done his own version at the cat when Toby gets too close! He is waving
"bye bye" again after we didn't see it for many many months. He puts
his palm to his mouth to blow kisses though he doesn't really throw
them out!

He is also making more sounds. He is a champion squealler, screamer
and crier but those are just vocalization and not real sounds. They
get our attention for sure but all squeals sound the same! It is a
guessing game as to what he is unhappy about! Is he bored or in pain?
Is he tired or dirty? It is like a newborn! He recently started some
"mmmmmm" and "nnnnnn". They really don't mean anything but at least he
is trying!

His behavior is more like a typical 3 year old!!! He is easily bored,
easily frustrated and largely non-mobile so you can imagine how I
spend most of my days!!! Thank heavens for school! He is currently in
a no sleep mode! He does this occasionlly. Like he just forgets how to
sleep! Thank heavens for melatonin!! He also currenly has a face rash.
He does this sometimes for no reason. I wonder if he is teething. He
keeps his fingers in his mouth if he doesn't have a paci in. Yes, he
still has a paci! I'm not sure if it is a soother for me or him! I
could do a whole blog on the paci! He is also letting me brush his
teeth more and even chewing on a toothbrush! All this oral activity
makes me wonder if teeth aren't trying to pop through!

Asa is very cognitively aware of who we all are! He gives hugs and
squeezes our necks! He gets excited when we pull into my mom's
driveway or Target! He laughs at the cat, as long as he doesn't get
too close. He really has a funny personality when he isn't overly
tired or overly frustrated!!

I feel so thankful and blessed that we are seeing the small and huge
inchstones we are able to celebrate!! Honestly the last few months
have been amazing! I can only thank God and praise Him for all the
blessings He gives us! God is good.....all the time!!!

Starry Nights!

We just got home from the most fun night!! We went to look at Christmas lights!!! What, that doesn't sound thrilling to you?! Tonight we drove an hour each way to see the Starry Night Christmas display at Shelby Farms in Memphis. Does that sound like a lot of driving for a few lights?! Well it is but it was worth it!

With Asa there are alot of traditions that we just can't or won't do. We've tried the Santa photo his first 2 holidays but it didn't go well at all! But in all of the "can'ts" we seem to have stumbled onto a big "can"!

A couple of years ago I had a big plan to go look at Christmas lights. We drove through McDs to get yummy hot chocolate and set out. During this time Asa was still not in a good place. We hadn't figured out his GI issues. We didn't know his sensory issues were so deep. We didn't have good supplements. All that to say that instead of a happy, fun family night of Christmas lights, we ended up with hot chocolate that was too hot, Gracie went to sleep and poured her hot chocolate all over her and Asa screamed bloody murder from tummy pain the whole time! That's how I remember the night! So it was a shock to me when the next year the kids couldn't wait to get hot chocolate and look at Christmas lights! Seriously, they wanted to do THAT again! But we did and it was fine! It was fun! It was great!!! So our new tradition was born!

Asa loves lights! Last year we found a house near us who sets up a huge display and even has a radio station you tap into so the lights are synchronized with the music. They have Santa dressed up and encourage you to get out and wander around their wonderland. They accept donations for their church's youth mission trip. Talk about a win-win! Asa squealled and loved those lights last year. I can't wait to go back this year!

When Anna was little Shelby Farms did a huge drive thru display that we went to for 2 or 3 years. Then they cancelled it. It was brought back this year after a 10 year absence! I was excited to try our new tradition with an old experience! And it didn't disappoint! The lights were great! The music...not so much! I'm glad we had our CDs! Asa squealled and laughed! The big kids liked it too! They may have enjoyed driving thru McDs and a road trip just as much but whatever!! We had a great family night and saw some great lights!

It didn't go perfectly though! When does everything go perfectly
though! We had to stop by a Walmart because Cade had a few bucks to
his name and it was burning a hole in his pocket!! When Cade, Anna and
I got back to the van, Barry and Gracie were changing Asa's dirty
diaper! He got his pants and shirt both dirty!!! What are the chances
that his 2 a day dose of Miralax would kick in just as we start a road
trip! You really just have to laugh about it! And it was fine since
our whole trip was in the van! And the memories and laughs just keep
on coming!!!

So......

4 hours in the van,
$20 on supper at McDs
$6 on hot chocolates
$20 for Starry Night ticket
$20 in gas
Time of laughing, singing and memories with the family.....PRICELESS!

Sick day

Asa didn't go to school or feeding therapy today. He woke up with a
slight fever. I kept waiting for more symptoms to appear but they
really never did. He poked his eyes a lot and dug at his nose. I had a
horrible sinus headache yesterday so maybe he had something like that
going on.

Taking his temp was funny. The only accurate temps are rectal. We
usually do under the arm to get an estimate. This morning when he felt
warm I needed a baseline so I did a rectal temp. It was 96.5. Hmmmm,
tried again....96.6. Really weird! He felt warm, eyes looked sick but
he had a low temp. I know his body does some crazy things but this was
CRAZY! I used the other thermometer under his arm and it was 100. Ok,
this made more sense! I guess the battery was low in Asa's
thermometer! It scared me for a second though!

It is tough guessing at Asa's illnesses! It could be teeth, pain, the
flu or autonomic! Take your pick! And his screeching and squealing
doesn't help! It has become his norm lately. It is hard to tell if he
is just rotten or if he needs something. I'm leaning towards rotten
most of the time! We are working on the sign "NO"! He told the cat
"no" today!

Just because we misses feeding therapy doesn't mean I didn't push him.
He tried a Gerber Graduates meal for lunch. He tried mashed potatoes,
gravy, chicken and carrots. He tried several bites of it all. I know
"several bites" does nothing calories wise but it is awesome texture
work!!!!

Hopefully tomorrow we will be back to our regularly scheduled
programming!!

Holiday celebrations!

This has been a fun week of celebrations! Everyone celebrated
Thanksgiving on Thursday but Barry and I also celebrated our 15th
wedding anniversary the same day! 15 years!!!! It really doesn't seem
like it has been that long, at least most of time!

Then today was my 34th birthday. I feel MUCH older than that!!

I'm sure I should do a long thoughtful post but I snuggled in my bed
with Cade and Gracie watching Kung Foo Panda while Barry does baby
bedtime duty!

Asa is doing well eating and trying new things. He is crabby, cranky,
spoiled. He is also having sleeping issues! And poop issues. But other
than that he is great!

Eating!!

Eating! Did you hear me?! EATING!!!! Asa is eating! And not the old way he was tasting. Not with our trickery, distractions and hoop
jumping! This is all on his time. His plan. And completely on His plans!!!!

We have worked so hard for this! And I'm not confident we have mastered anything. This may be one of those brief glimpses of "normal" that fades away. Either way, I'm gonna enjoy and celebrate!

Asa never wanted a bottle or sippy cup. It didn't matter if it was full of breast milk, nasty Neocate, juice or tea. He didn't want anything in his mouth! Then he started letting us put a few textures in his mouth but only on certain spoons, from certain containers, in certain chairs with the perfect amount of quietness or distractions. And we complied!! We did whatever it took! We sung,we danced, we were still, we did it all! And it was tiring and frustrating and sad. And then he'd take a bite and it was wonderful, glorious, amazing!

I'll never forget the day he first drank from a straw! We'd tried a honey bear cup with a straw but we'd squeeze out the liquid without him sucking. We'd tried thickening liquids. We'd tried juice boxes, Capri Suns and cups. And then one day, one beautiful day, he finally sucked from a straw! That opened up a whole new world for us! He could have juice boxes for extra fluids. We put the Pedisure in straw cups and he'd drink it.....usually!

Still he was only living off the Pedisure. He'd have applesauce or yogurt a couple of times a week and only if we had his environment perfect! We add texture and he'd gag. We'd just put it in front of him and he'd gag. Sometimes he seemed to have stomach issues and he wouldn't eat. Other times he just wouldn't eat. Gradually we got him to eat chocolate cheerios, DumDum suckers, Smarties, pudding. What a menu, right!

Gradually Asa started tolerating more textures. He was still picky about the environment he'd eat in and he was so wishy washy there was no consistancy! The ups and downs are so frustrating! Not to mention he had no desire for food! He never asked for it and at best tolerated if we offered!

Then a few weeks ago Asa started willingly eat during feeding therapy! And there was his love of bananas! Then marshmellows! And then he actually WANTED to eat! He'd ask to eat! He'd get all excited and squeally! Now that is fun!!! I've been raving on Facebook about his
eating and I really can't remember everything he has tried! He had a
few bites of meatloaf yesterday. He had spaghetti squash tonight!

But the most amazing thing is his desire to eat! We can work through
his texture issues but only if he has a desire to eat! I wish I knew
what the magic switch was but your guess is as good as mine! Now we
just need to increase the amount he can eat and tolerate! He will
still be dependant on at least 2 bottles of Pedisure for calories and
nutrition. He isn't tube dependant though! We only use it a few times
a week and usually in the mornings when he has gotten too hungry and
then refuses to eat! We use it nearly everyday to drain when he gets
sick. I'm not really in any hurry to get rid of the tube. It is a
comfort item for me! Doesn't that sound odd but as long as he has the
tube I can keep him hydrated and growing!

A cute story....Asa can and will sign "more". He pokes his open palm
with his pointer finger of the other hand. I recently taught him
"please", open palm makes a circular motion over your chest. I'd give
him a bite of cookie. He'd sign "more". I'd do "more, please" until he
got it! It took a whole cookie but he'd finally sign back when I said
the words! I was thrilled!! Then he wouldn't do it again the next day!
Oh well! Until tonight!!! I gave him a bite of squash and he signed
"more". We did this for a while! Then he started making circles on the
table with his palm. Anna said "what is he saying" and I realized it
was "please"! As soon as I said please and did the correct sign, he
did it back!!!! Wow! He has trouble and wants to rub his leg or the
table but it is close and we can definately tell what he is saying! A
step closer to communication! And not a moment too soon!

A not cute story.....I took the radishes away from Asa at the grocery
checkout. Couple that with being tired and hot and he lost it! He
started squealing and schreeching! Ear piercing!!! Several people
around us I signed deeply and there a "maaann" comment from somewhere.
No paci would do, no marshmellows would do, only me holding him which
is impossible while checking out you groceries! So I let him screech
and scream. No need to get flustered, I couldn't change it! That is
just what he does! In between outbursts a family asked how old he was,
in a nice way not that mean, judgemental way! We had a nice chat and
they completely got it! You gotta love when God puts angels in your
path! Just a little "good job mom" when it is tough! Gotta love those
God moments!!

Our busy day

I write blogs in my mind all day. Most of the time by the time I get to the computer my mind has deleted the post so you miss out on my words of wisdom and just get updates. Then there are the days when something more important happens than the original post! That was today!

Our plan was for Asa and I to have Thanksgiving lunch with Gracie and Cade at school. I was very nervous about this! Lots of kids, lots of parents and grandparents and lots of noise. This was the set up for Asa to have an episode! Much like he did at the Christmas program last year. And graduation last year. And the fall carnival last year. This year Asa hasn't been to school! I was praying all day for a peaceful lunch. I talked to Asa about the noise. I got a drain bag all ready to go.

So we got to school and it was packed! I continued my pep talk with Asa. He did get pretty fussy but by the time we got in the lunchroom he was good. Even great! He was laughing and hugging Gracie. He even ate lunch!!! I started with sweet potatoes. Then he had cranberry sauce. Then I even tried the dressing. Success!!!! Complete success!!! He loved it all and kept asking for "more"! After lunch with Gracie, we hung out with Cade's class. It was good that I could have eaten a second plate but I didn't! Asa did really great the whole time!!! When we got in the van to go Asa signed "more" and looked down where I keep the hand sanitizer. Then he rubbed his together like rubbing the sanitizer in! He asked for sanitizer! I find that so funny on so many levels!

Tonight I taught him the sign for "please". That's misleading. We've worked on it a few days but tonight he gave it back to me! I was still prompting him but he signed it. I'd give him a bite of cookie and he'd sign more. I'd sign "more please" and he'd do more but please was wrong. He'd try but it was wrong. On his last two bites of cookie he got "please" right without my hand over hand help! Now we've just got
to work on consistancy!

And futher proof that Asa is a genius... I've got an iPhone. A commercial came on tv for the new iPhone and Asa completely turned around and reached for my phone that was on the table behind him!!! So funny!

Not so funny, Cade has strep throat! He had a sore throat this morning but I thought it was his allergies. He did the allergy meds and headed to school. He was fine at lunch. Then this afternoon he got off the
bus in tears. That's pain for a tough boy! I took him to the walk in
clinic and he has strep. We've always taken the shot for strep but the
kids have been smaller. Fighting a 9 year old boy is a whole other
thing! Thankfully Cade was tough and took the shot very little
arguing. I asked for syringes for the rest of us but the doc wouldn't
go for it!

Asa has the right idea with the sanitizer!

GI appointment

We finally had our long awaited, often cancelled GI appointment. And I fully intended on blogging about it yesterday but Asa would NOT go to bed last night! And I suppose this morning is a fine time to update too.

This appointment was with a nurse practitioner who travelled from Vandy to our local clinic. I was dreading going over Asa's history with someone new. It seems we are seeing a lot of new people lately. She had read up on him though and I didn't have to back track much. She is referring several questions to the nutritionist and is supposed to call me with those answers today. She was pleased to learn that we only have to use the tube a few times a week. Since Asa learned to drink from a straw this is how he gets most of the Pedisure! I love it!!! Why he wouldn't take a bottle or sippy cup I'll never get!

As for the poop..... Warning: graphic poopy talk, skip down a few paragraphs if that grosses you out!..... First of all she is amazed that we haven't dealt with this before. The GI system is a large group of muscles and we know Asa has muscle trouble. That's why his stomach doesn't empty and he has reflux. But his lower GI system has worked pretty well. He has had some spotty trouble but a little juice and miralax and he was back on track. Never has he gone 6 weeks with constipation.

What started out as hard, painful pooping has changed. He is now trying to hold the poop because he knows it will hurt. This is not a good thing to start! It is similar to his eating, the horrible reflux made him afraid to eat because of the pain. 3 years layer and we are still fighting against that! So we took an xray of his belly to see how full he is. She will call today with the results and a plan for a cleanout. Now doesn't that sound like a fun weekend!

We talked about lots of other stuff and I'm pleased with our plan of action. She was concerned about his "episodes" as I call them for lack of a better term. She wished she could help him not puke daily. Yea, me too! She asked if they were "behavioral". We've heard that word a lot too. I'm not sure how I feel about that! I think it is something that doctors say when they have no other ideas. You know, puts the problem back in the parents lap! And this doc wasn't saying that is the problem but I know several other kids who are having major issues and they are getting blown off by calling them behavioral issues! I think I'd have some behavioral issues all over those docs if that was me!! Keep fighting Christy!

****poop talk over****
But I do admit we cave into Asa often. Something about that ear
piercing scream! For instance, he LOVES water! So the keep him happy
at appointments I've let him play in the hand sinks. And this often
means his sitting on the counter in a diaper with his hands and feet
splashing in the running water! Yesterday I taught him howto operate a
water fountain. I figure it was a good cause and effect activity.
Don't judge me, if it was your ear drums curling up and dying you'd
stick him in the sink too!

True Milestones!!!

Good news first! Asa sat up tonight all by himself!!!! Bless his heart, we've been working on that forever!! He has all the steps but can't or won't put them together. It is such hard work. There are lots of steps involved! You just lay down on your back and try to get up. How many steps does it take? I'm gonna try again tomorrow and have my camera ready!

And that's not all! At feeding therapy today Asa was having some peanut butter and graham cracker. He has had those before and was doing well with them. Then Mrs. Jill gave himsime sausage and biscuit!!! As soon as it hot his mouth he signed "more"!!! Seriously!!! He had several bites! We were both amazed!! I'm so proud of him trying new foods! Again we've worked soooo hard for these small but huge steps!

There was another milestone today too but it wasn't exactly a good one! He got startled and sick at school today! His teachers had to hook up the tube and drain him! :( They did great though. I'm amazed he has made it 3 weeks without freaking out on them! At least they know they can handle it!

Asa has a GI appt in the morning. I better get my thoughts on paper and be ready!

Same ole, same ole

It doesn't seem like there has been too much going on here. I think that is a good thing!!

Asa did well at school last week. It really tires him out and he usually has a melt down in late afternoon but that has been happening anyway so not much new! He is still super constipated but we see the GI NP wednesday. I hope they have ideas but so many have been tried and we've had no change.

He is being more adventurous in eating though! Sunday morning he ate a whole half of a pancake with me feeding him. Today I sat him at the table while I cooked super. I gave him a cheese cracker with peanut butter. He has held them in the past but tonight he ate them, 3 of them!!!! He has had bites of lots of other of our food too but this was the most he's eaten at one time! If he keeps this up I can see him one day eating enough so he isnt tube and Pedisure dependent! Won't that be something?!

Tomorrow is feeding therapy and school. Yay for school!!!

Little artist

Well as I predicted Asa did better being out of the house today! This is what he was doing when I picked him up at school yesterday! He was having a good time with his own glue stick. He didn't evennotice me for the longest time!! At feeding therapy he made a tissue paper turkey. He wanted to pull the tissue paper off instead of put it on though! He is good with a crayon though. And I can ask he to draw a circle and he goes from scribles to circles!!

And he really did feeding too, not just turkey making! He had some marshmellows and graham cracker. Both are new foods and he self feed the graham cracker!

After feeding therapy he got a hair cut. DRAMATIC!!! I've been cutting his hair when he is in the tub. Just a few snips here and there. Now he won't let me touch his hair much less cut it! So I took him to the professionals!!! Bless the lady, she is so fast and can catch a moving head!!! It took 3 of us, 2 Dum Dum suckers, a balloon, lots of tears and screaming but it got done!! Whew, hopefully that will buy us a while. His hair grows so fast!

It wasn't a perfect day though! Asa screamed from the time we got home from school until about 5:38, or not that I was counting! If I sat and rocked him he was fine. And I did that and he took a 30 min nap on me but there was homework to be done and supper to cook. Anna tried to take him for a while and that didn't work either! Nothing made him happy. I don't think anything was wrong. I think it was behavioral. That's almost worse!! He went from fine to fit in a second! Hopefully we'll have a better transition today!

Downtime!

Oh what a weekend! The high point was that I got to have a Sunday afternoon with my mito moms!! We had lunch and talked and shopped and talked! Then we emailed when we got home!!! I'm so thankful for all my online friends and especially my real life friends who really understand all this YUCK! I'd be a crazy mess without you all!!!

Asa is still down! I'll spare you the gross details but he is still pukey, not very eaty, crabby, noddlely and now diarreah! I thought he was puking because he wasn't pooping. Now I'm thinking a virus. He hasn't puked since Saturday but I used a suppository and he didn't respond so Sunday I used an enama. Today he had diarreah twice. Did I induce that or is it a virus?

And the GI symptoms are just what they are but the crabbiness and floppiness is what is hard to watch. He wants to do and go but just doesn't have the energy. He is NOT happy to sit and rock! I spent the whole morning carrying him room to room but he'd just point in another direction. EXHAUSTING!!! At noon I just laid him in the floor on his back and he was happy! For an hour he just lay there rolling around a little but mostly just hanging out. It's sad he just didn't have the energy to even sit up!

Tomorrow is going to be a big day. I don't think it'll be any better to hang put here again. I still plan on feeding therapy, haircut and school. I guess I can throw in the towel if it gets to be too much. But if he doesn't get a haircut soon I'll have to give him pigtails!!!

ECHO and sick

I was going to blog last night but instead I went to bed a 8:30! I had tried to get Asa down for over an hour and when Barry came to relieve
me I just laid down in frustration. The next thing I know it is 1am!! Isn't Barry the sweetest for letting me crash!

Moma and I left home at 8am yesterday headed to Vandy for Asa's heart ECHO. We hadn't gotten far when Asa suddendly puked. He wasn't crying or startled, he just puked. He hasn't done that in forever. Then I remembered back to when I got him up. His room had a terrible odor. I don't even know how the describe it. His cheeks are flaming red. He has no fever and seems fine. Could all these be connected?

He got sick another time in the car and I stopped and bought a new outfit since I'd left his spare at school. He seemed fine! He had his lunch cup and didn't get sick.

We got to Vandy at 11 and headed to the ECHO lab. An ECHO is just an untrasound of the heart. No poking, no prodding, easy peasy. Right?!!! Asa did fine the first half but then he lost it. I just hope he was ok enough to get a good reading! The test will be read and sent to our Dr. next week. I expect it to be fine. We left Vandy before noon and began our 3 hour drive home.

Asa continued to eat normally, play and seemed fine. Then at home he puked up everything he'd had ALLDAY!! Massively gross! After I cleaned him, the table, the floor and 2 chairs up, he seemed fine. He scooted and played. Barry gave him some watered down juice and as soon as it went down it came back up. He did keep down some Pedilyte before bed.

All of this could be stomach bug but since he hasn't been pooping it has me worried. His GI appt on the 17th can't come soon enough! Oh and it is at a clinic here!!!! We have no more traveling scheduled until March when we head to Houston.

I'm praying that today is puke free!!!!

Wheeeeerrrre's Asa?

This is how Asa spent the day yesterday! I also caught him putting an ice cream bucket on his head but he took it off when I got the camera. He was even scooting around with them on his head! Now that was a sight!!

Time flies!

I can't believe it is November already! I'm ready to get the tree up! What about you? When do you start the Christmas decorating? How about Christmas shopping? I've already got a lot. And I've got ideas for the rest.

Asa went to school today. It was his first Monday! Why is there such a stigma with Mondays? He went to music class and had speech therapy. When I got there to pick him up, he was hot and tired. Can you believe 2 1/2 hours tires him out?! I guess I forget how much down time he gets here that he can't get at school. Hopefully he'll build up a tolerance and be able to play longer. Thanks for all the tips about pick up! I've started coming in slower and hanging out a little. Seems to really help. I guess the Moma bursting in the door would be a little startling.

Today I had Chinese food for lunch! I know that doesn't sound news worthy but it is!!! First, I rarely get a meal alone that isn't rushed! Second, no one else in my house likes Chinese! We get take out pizza or Mexican or chicken but never Chinese food!

As I type this Asa is eating spaghetti and green beans!!! Mostly spaghetti! He makes the worst face when I give him a bite of green beans!!! :-)

And lastly.....Don't forget to vote tomorrrow! No matter who you vote for, just vote! I can give you some suggestions if you need help! Im tired of the polling calls and a mailbox full of flyers too but this is important! Our service men and women have fought for our right to vote. There are many countries who don't allow their citizens that right. Voters are forced to vote a certain way or tortured and killed if they dare vote at all! Voting is one of our most prized privilages and we need to use it! We can't control what the elected officials do once they get in office but to sit on our behinds and do nothing at election time shouldn't be an option! And if you don't vote you certainly can't complain about who got elected and how they govern! Again, if you need help deciding who to vote for I'll give you my 2 cents!

Stuff

Here's some videos of Asa playing the piano. He loooooves the piano! I made a long one but it wouldn't upload and who really wants to watch him tap on the piano for 5+ minutes! 

http://www.youtube.com/watch?v=t8IVPLoPx6I&feature=youtube_gdata_player

http://www.youtube.com/watch?v=LlLH37y7NXE&feature=youtube_gdata_player

Asa's school is going pretty good! He is happy when I leave him and yesterday he was happy when I picked him up. Then I spoke!!! He burst into tears, screaming! He cried so hard that he made himself sick. Why would he cry when I pick him up? Does he forget to miss me until he sees me? I wasn't expecting that!

We had a happy moment today! You know how he loves bananas. Holding bananas that is! And eating a little if I pinch it off. Well, today after school Asa was sitting at the table while the big kids did homework. He was fussy and grumpy. I handed him an opened banana. I'm not sure what I was thinking. We can never just hand him food and him eat. Food involves therapy! But not today!! He ate half that banana while I was doing dishes and Cade and Gracie were doing homework! CRAZY good!!! 

Yep I know bananas won't help his poop issues but what do you do?! 

Waiting on........poop :-(

Asa has been an eating machine today! He took a banana into feeding therapy with him this morning. He had it, some peanut butter, some baby food pears and some white grape juice! He's also had a cup of Pedisure with Miralax. And a cup of Pedisure with fiber. For supper he had some black beans and a cup of water. Seriously, this boy should be pooping by now!!!

Asa's transition at school went much smoother today! We went in and he pointed at the flag (he loves flags!!), pointed around the room and then got still and stared at the TV in the room. It took a second for me to realize why he was soooo fascinated.....my soap opera was coming on!!! At noon I get lunch and sit down to watch "All My Children". They had been watching the weather in the classroom and the soap was coming on as we came in the room! How funny! A couple of commercials and a few shows (Wheel of Fourtune!) really get his attention but he has no interest in cartoons!

I'm not sure the rest of the day went as smooth! When I went back at 3 I saw that they had him outside . By the time I got in the driveway, they were meeting me in the parking lot!! They said he was getting fussy around 2 and by 2:55 he was over it and ready to go home!!! This
is him on the way home! Love it!!

<


I enjoyed my few free hours! I loved popping in and out of stores without spending 10 minutes getting out of the van! I even got to take a potty break, something I rarely do when I have Asa alone! I know, TMI but I guess I'm in a sharing mood! Lol!!

Second verse, same as the first?

Asa starts his second week of school tomorrow! I'm hoping drop off gets even better. I don't want to hover but I also don't want to dump a puker on them and run! Not yet anyway!

Asa is struggling a bit. He has been soooo constipated. It is awful! The week we were on fall break is the last time that he was able to go without the tears, red face and hard poop! We've added miralax every single morning. We've added extra water. We've stopped apple juice and added white grape juice.

Of course if he is full of poop, he isn't eating as well and certainly isn't digesting well. Lots of puking!

And if that is TMI for you then you shouldn't read this next part!

Asa had a Dum Dum sucker while the big kids did homework. He also did a marble size poop. Since he was all sticky and dirty, I stuck him in the tub (kitchen sink) while I started boiling chicken for supper. I washed him and let him splash and play. Anna was unloading the dishwasher and let him (yes I blame her!) pull Cade's bowl of leftover cheerios into his tub! He was a little freaked out about the white tub water and floating things! I was trying to get the rest of the chicken taken care of and figured another second wouldn't hurt. WRONG!!! Then he started trying to poop!!!!

Can you picture it? Me with slimey chicken hands, Anna not about to touch the gross water or baby and Asa sitting in a sink of watered down cheerios and poop! Thankfully I was laughing not yelling! I got Asa out and was dealing with him puking when Barry came in! Bless his heart!!! He did the clean up!! Again, bless his heart!!!

Unfortunately that still wasn't enough poop and Asa is still trying to go! We have a GI appt on November 17 and that can't come soon enough! I feel like going back to the pump for pedisure feedings and letting him eat orally and drink the juice. Don't kill me Jill!

He is trying some new foods. We always let him hold our French fries but he never puts them in his mouth, just holds it. This weekend he started putting them in his mouth and fussing for more!! Today Anna was eating a dorito chip and he started fussing. She gave him one and after a while he put it in his mouth!! She even showed him how to lick his fingers!! We joked Sunday about the steps we take to get him to try a new food. He touches it, holds it, smells it, kisses it (lets it touch his mouth), lickes it and if we are good, he eats it!!! For nearly each bite!! You see the need for the feeding tube?! He is
trying much more so I guess we are doing something right. Just keep on
keeping on, I guess!

Strikes for Tikes

The Kiwanis Therapy and Learning Center has a benefit each year called "Strikes for Tikes". It is held at a local bowling center. You form a bowling team and raise money that benefits the center. I thought the teams had to be businesses with large donations so we never had our own team. Until this year!!!

Team Asa consisted of me, Barry, my longest time friend Christina and her hubby, Eric! Cade ended up bowling for me and Eric was a fill in for my mom. Cade came in second and Barry came in last! I wish I could have seen that!

Turns out a bowling alley is incredibly loud and stimulating! I had to take Asa out and keep him calm for the most of the bowling time! He may have handled it better but the sound system had some issues and let out 2 sudden, loud screeches early on. I'm thrilled to say that while Asa wasn't happy, he didn't get sick at the overstimulation!!!

After bowling we all had lunch, played laser tag, played putt putt and enjoyed several arcade games! All for free, other than our team donation! I even won a door prize for having a Dum Dum sucker on hand.

We had the best family day!!! The kids had fun and I didn't feel nickeled and dimed to death since the money went to a good cause. We got to see and hang out with lots of friends! I can't wait until next year!

After the bowling fun, we headed to a family hayride and party. Asa even rode the hayride and had fun. He'd laugh out loud when the trailer would bottom out and scrape the path. We had pushed him enough so when he started to fuss we headed home! There was even a trick or treat circle where we all sat in a circle and the kids came around asking for candy. It was so cute! Cade and Gracie came home with big bags of candy! I can proudly say that they both had treats picked out for Barry, Asa, Anna and myself! That is very generous for Cade since he has such a huge sweet tooth!

We had a great, nearly normal day and it went nearly perfectly! I go to bed thankful and grateful for our many blessings. I also go to bed with a heavy heart for another one of our mito friends.

Please remember Cooper Knight and his parents, 3 siblings and family tonight. Cooper had an intestinal transplant many months ago. He had just returned home to Houston and after a short, healthy stay at home, he is back in the hospital and very, very sick. Please pray for Cooper to fight off this nasty infection but also for his parents as they struggle with making some difficult decisions. Mito is a horrible
disease!

Old and broken down!

I had an eye opening experience yesterday! As I was bending over to stand Asa up and help him walk, something happened to my back. There was a pop and then pain! I mean PAIN!!

Asa was on his feet but I was only holding him with one hand. He was wobblely and squealing. I was still half way down and in pain! Both of us were fussing and crying!

I got him back up and carried him to the back door where he happily sat and kicked the back door. Thank heavens I finally got him interested in something so I could evaluate myself! I had a stabbing, shooting pain in my lower back and down my right hip and leg.

In my agony I realized how much Asa depends on my body. His body won't let him go and do so he points and I carry him. Up and down the stairs. Into the yard to see the trees and leaves. I pick him up into his high chair. I sit him down to scoot and play. I lift him into the van and into his carseat. I never really thought about this before.

Sure he has an adaptive stroller but it weighs nearly 50 lbs so it stays in the van. He has a gait trainer but mainly uses it as therapy not a way to get around. At 3 years old and 30 lbs I guess I didn't think he was to big to carry around all day and most of the night. Turns out I was wrong. I guess I'll be using our equipment as routine now.

My back feels better today. Sore but less stabbing pains. I've been on a heating pad all night and day though. I didn't go to the doctor. I'm guessing they'd just give me muscle relaxers that would leave me unable to take care of Asa so I'm sticking to the heating pad and ibuprofen. So far so good!

I was really hoping I had many more years before I started breaking down. Maybe I'll try that whole exercise and healthy diet thing. Afterall, I'm no longer just thinking of myself!

First day of school

Asa's first day of school was today. Now I'll admit that I was nervous when we first started talking about school but I was excited today!
We've been in the class twice and Asa has just made himself at home so I assumed today would be the same! It wasn't!!!

Asa started getting fussy and clingy and just not himself about an hour before he had to be at school. Since I wasn't able to cater to him, he got mad and mad got him sick!! By the time we met the teacher I had him hooked to a bag draining and he was sweaty, clingy and sleepy! Not the best intro!

Asa spent the first hour gagging, clingy, whiney and tired. Once he shook the yuck though he was laughing and playing!! That is when I slipped away!

He was happy and playing when I got back. I didn't take any pics cause well, I just didn't. Maybe tomorrow!

I'm excited for tomorrow! I'm certain it'll go better! And my concern from today isn't for Asa but for the poor teachers!!! I know they can handle him and I love the room and the fact that there are only 2 kids in there. But it is like when your kid poops for the babysitter! I don't like the fact that they had to baby him. I wish he was feeling his best and could just play! I'm sure I'll get over that though cause he has a lot of bad days. He can't stay home for them all! He is just a more complicated kid. That is why he is in this wonderful class
though!

So we'll press on tomorrow!

Fall break and Birthday pics---finally!

Ok, this took a while but see if I've got it now!

Fall Break 2010

Nashville TN

Asa and his Dee Dee

Asa loved the balcony. He had Dee Dee trained. He'd reach up for her and when she picked him up, he'd point outside!

Look at him stand! He even shuffled around a tiny bit.

We went ice skating!

And swimming.....outside, inside and in the hot tub!

We went to the zoo!

Asa had gotten sick here. I kept him from totally losing it by moving to a quieter space and letting him play with the leaves.

He really LOVES the leaves and grass. I'm not sure he even knew there was animals around!

And shopping!

This is the shirt I bought Asa for his birthday! I should have gotten one in each size!

Happy 3rd Birthday!!

This is our present to Asa. He really liked sliding outside so I got him something he can use inside. We are also hanging a swing in his room, and by "we" I mean "Barry"!

Of course he really liked the BOX!

Ready for presents

He loved his cards and especially the money! He kept smelling it!

I didn't want to go with a cake just for the sake of having a birthday cake. I wanted something he'd might actually eat! I made mini lemon ice box pies. He ate it all, except the crust!

I know he looks thrilled doesn't he?!

Appointments update

Asa had 2 appointments at Vandy today. It should have been 3 but his neurologist cancelled and wanted to reschedule next week! Sorry but 3 trips to Nashville in 3 weeks is a little too much!

Today Asa saw the developmental pediatrician first. They used the Bayley test to check his development. Asa performed at close to his best! There are a series of skills test to see if he can accomplish them. For example, can he put 9 square, red blocks into a coffee cup? Can he place 3 out of 5 pegs into the peg board? It is all pretty specific and only the tester can give tips or help him. Asa was so funny! She'd put the peg board in front of him, show him the skill and he'd do it. Then she'd take the peg board away and he'd sit with his hands on the table while she got out the next skill. He was a very patient and a willing participant!

So how'd he do?

Gross motor-7 month level

Fine motor-24 month level

Cognitive-19 month level

Receptive lang.-18 month level

Expressive lang.-11 month level

I think these levels are pretty accurate. His other evals are pretty close. I'm not sure his fine motor has ever been that high though.

So we went over his school IEP, his therapies, his feeding (or lack of), our goals, etc. It all seemed great! And we don't have to go back again! Unless something comes up, of course. As we were finishing up the appt. they handed me some paperwork (his growth charts, which are wonky!), a pamphlet about sign language (anyone know a local teacher?) and a reimbursement form.......WHAT, a reimbursement form! From a doctor?! Yep! The Dr. said they get state funding and decided to use the money to reimburse families that follow up in the clinic! I took my form downstairs and was handed $40!! Almost too easy! I'm sure there is a catch somewhere and I'll get a bill for $100! And you'd think I'd never had $40 before! I kept thinking of things I'd do with the free money! It ended up that I bought our lunch at the hospital and I need to refill my gas tank. Easy come, easy go!

Next was the geneticist appt. Our geneticist left and we were scheduled with a specialist I'd met before at our Vandy mito meetings. He is the group's medical advisor. I've chatted with him several times and he checked in on Asa once but now he will be Asa's specialist. His title is a Neuro-Geneticist in the Developmental Dept. Does anyone else notice that is encompasses 3 different specialties! His involvement in the Dev. Dept is only administrative but we already determined that we didn't need them again right now. He will however be taking over as Asa's neurologist! And he only wants to see him once or twice a year (unless needed, of course!). So I've narrowed our specialist down and spread them out! I feel like I've accomplished something today! He does want us to see cardio again (just as a precaution) so that takes up one space I guess!

Now for all my medical junkie fans.....

I asked about a new test available from GeneDx. It was in this months edition of the newsletter from the UMDF. It can test for 2 new genes in Complex IV that Asa hasn't been tested for. After chatting we decided it wouldn't do much good to test right now. Asa has shown to be heteroplasmic for a mutation that I'm homoplasmic for and I'm symptom free. Dr. K says this doesn't matter and this is the cause of Asa's mito. Dr. Tyler disagrees. He says it is meaningless. BUT, he says Asa's muscle biopsy is enough to list him in the highly probable mito category. In his book you need a known mutation to have mito. He was upfront and honest about this.

My explanation of his view is this: If he was a police officer called to a car accident scene where the front car had rear bumper damage and the back car had front bumper damage, he wouldn't assume (like we all would) that the rear car hit the front car. He would look for video footage of the accident to prove what happened. Now, this may be very overprotective and he is definitely covering his own behind (he stated that!) but that is his MO. He was very encouraging of us seeing Dr. K. I think I'll keep him......for now! I totally went into this appt. thinking I knew what he'd say and we'd differ and I'd move on. Now I'm not so sure!

He also said Vandy was being considered to participate in a vaccine study. It is a records only study where they'd look at the kids immunization records and then reactions to see if there is a correlation. They don't expect to find anything......HA, there we may disagree again!! He didn't have final details but thought Asa would qualify and only a few clinics were selected. I know I've seen a link about this somewhere but now I can't find it! Figures!!

Asa made the trip great. He is struggling with constipation again and had a couple of tough times but his doctors also helped me with a plan for that!! He has made the last few trips so well that we don't even have to stop! That means we can be there in 2 1/2 hours!! Yay!

I'm still working on the pics!! ;-)

Busy week!

We have had a busy week and I've had no way to blog! Talk about withdrawls!! And now my computer is full and won't let me add new pics! The horror! Something to deal with later, I'll just update now and pics later.......hopefully!

On Tuesday my mom and I took the kids to Nashville.......all by ourselves! The kids weren't sure we could do it alone!!?! We made it and had a great time! We usually go for a long weekend in the summer but the resort got flooded in the May flood. So we planned for fall break and it was perfect. The weather was just right!

On Wednesday we went ice skating. In January there was a mito meeting and we were gonna go ice skating after the meeting to celebrate Anna's birthday. Well, there was a snow storm that weekend and we didn't get to go. One busy weekend led to another and we haven't been. Sooooo, now they could go ice skating! Cade wore out pretty quickly, he got huge blisters. Gracie made Anna fall hard and Anna was pretty much done. Gracie fell a million times but she said "I did good. I only fell like 5 or 6 times"!! I was great!! I even learned to turn and go backwards while still skating! I know, I know!!! Hold your applause though! Gracie and I were going to go around 1 last time before we left and that is when I fell!!! OUCH!!! My palms, knee and hip are still sore and bruised!!! On and I got a nice blister on my heel that bothered me so much I couldn't wear my tennis shoes to the mall or the zoo! Oh, well, we had a blast and the kids got their fill!!

After ice skating we went to Jake's House, the Life is Good shop. I didn't know we had one nearby!! I got me a shirt and Asa a new one. There is something about having that positive reminder on the real tough days!

On Thursday we hit the mall!!! We always go to Opry Mills but it was flooded and hasn't reopened! So we headed south to Franklin. We shopped till we dropped and then we shopped some more! I'm not sure that we bought too much though. I got Asa some cute shirts, which I have pics of but can't load! Cade has saved his yard mowing money all summer and we itching to spend it! He actually said, "this money is burning a hole in my pocket, hurry up!". Now were would he have heard that!!! He spent his money and was happy!

On Friday we went to the zoo. Now I should have planned better and not gone to the zoo on a Friday! It wasn't bad but I'm sure it'd been less crowded on Wednesday or Thursday. Two very loud and excited monkeys greeted us as we entered but the rest of the animals were asleep!!! Gracie got mad cause we wouldn't buy her Dippin Dots, even though the stand was clearly not open! Cade's feet hurt and with the animals asleep it was kinda boring. Although the zoo was so amazing, but clearly not exciting enough for them! We were set to leave but then Cade and Gracie went on the playground! That alone was worth the money!!! It was so fun even Anna and I joined in!!! Asa got jealous and went in for a little while. Mostly with me holding him and him pointing to where he wanted to go! That lasted way too long if you ask my shoulder!

After the zoo we went back to the resort and the kids swam! Sure there is an indoor pool but what fun would that be?!! They got in the outdoor pool for several minutes and I got knee deep into the kiddie pool with Asa. The kiddie pool was nice but the big pool was cool. We headed inside where Asa and Gracie played some more. Those 2 even came back to the room and got into the jacuzzi tub in the room!!

This had to have been the most relaxed vacation for me ever! We had no set in stone activities. Our rooms were big enough for 8 people and we only had 6 in them. We all had our own room and our own space. The kids watched enough Disney to last them until next year and Anna had her own "apartment". My mom did all the cooking for us! I'm telling you it was the best!!! I'm spoiled now!!

Asa's birthday was on Thursday. We really didn't celebrate with anything special. We did have a little party today though. I say little cause can you imagine Asa in a room full of people with balloons, streamers, hats, noise makers?! Ha!! I almost bought a pinata for the big kids but thought he might freak out at the hitting and excitement. He had a good time today though.

I've stuggled to get him a birthday cake he might actually try. The first year it was cupcakes. Last year it was a cake I made. This year it was mini lemon icebox pies! And he ate it!!!! I have cute pics but you know.....

Chick-fil-A update!!!

I guess good things really do come to those who wait!!!

I've had a hard time waiting patiently on the results from our awareness night at Chick-fil-A. I've called the night manager several times and even the day manger and owner once! They are probably sick of me!!! I don't think it would have been so bad if they had told me how many of the millions (lol) who ate that night remembered to mention "mito"! I mean we had the place packed but the deal was that we only got a cut of those who mentioned "mito". So I waited....and waited.....and waited! The final word was that they'd cut the check when they closed out the books for the month. So we checked the mail on Friday.....and Saturday.....and even Sunday in case we missed it on Saturday! Guess what, we did miss the mail on Saturday!!!

So the total......

Chick-fil-A donated $450 to the UMDF in honor of Asa! When you add in the tips from the night, $167, we will make a donation of $617!!!!!

I never would have imagined!!! I thought maybe a couple of hundred at the most! And after having to wait so long for it, I was really worried!! But THANK YOU CHICK-FIL-A!!!

And a huge thank you to all those who came out or told a friend or harassed their FaceBook friends! It was absolutely worth it!!! Thank you all!

Hair raising day

We have had the best day. Well, I have had the best day!

Barry stayed home with Asa and I took the big kids to a Jubilee Celebration at the church next door. There were 6 churches involved, 3 white and 3 blacks. I know many races worship together and I doubt many here would have trouble with that but we are small, country churches and that has just been how it is always been done. We've met and had joint services several times but this was a big blow out!!!

There was bouncy houses, food, a car show, health screenings, visiting, singing and worshiping God! I needed this so badly! We've had a busy, busy few weeks and to have a day to visit, eat, play and worship with everybody was just what I needed! All the music and the preaching was great. Everyone was singing, clapping, laughing.....it was great!

Barry was thinking of bringing Asa but when we could hear the music from our house, a 1/4 mile away, we thought he probably wouldn't like it!!! And it was loud but the weather was perfect! Barry took Asa outside here but the wind got him and he got sick. Oh, well!

We did go back out this evening and Asa rode in his little power wheel til the battery ran out! I took him on the trampoline for the first time! He liked it! Then he loved it!! LOL! He could make very little movement and get all bouncy. He scooted all over. Then he touched me and shocked me! I was worried this might scare him but NOPE, he laughed and poked at me again!! The wind was still strong but he was busy so he didn't get sick. He did get DIRTY though!!! His bath water was black!

I think we will all sleep well tonight!

An end of an era

I've had this post in my heart and head for a while. Finding the time to put it on here is another story!

Asa is officially graduated from Early Intervention. Well, I guess technically he won't be until he turns 3 on Thursday but for all practical purposes he is done. Today was our final appointments with the therapist and teacher we have know for most of his 3 years! And I was a big girl with no tears!

I remember getting the phone call that Asa had been referred to Early Intervention and I had no idea what that meant or who that was! I was told that he was referred since he had a stay in the NICU after birth. They wanted to come out and evaluate him to see if he qualified for services. Again, HUH? I argued back and forth and finally agreed that they could come out. At this point Asa was little, tiny really, only a month old. We didn't have any clue of his delays. He was difficult and screamed but no signs of other issues. By the time we got to the appointment date, I realized something might be up. I'd tried to tell his ped but got nowhere. So the EI coordinator came out and we did an eval and Asa did qualify. And that is when I made new friends!

There is no handbook when you are sent home with a special needs child. And honestly, in my life I'd never known any kids with disabilities. I was seriously clueless! These teachers and therapist were the first people I'd met who had any idea what was laying ahead for us! I'm surprised I didn't scare them off by clinging to them for my life at first!

Katie with Asa at Chick-fil-A for Mito Awareness night

Katie was Asa's EI coordinator. She is a hoot!! And I love that cause she'd have to come out and we'd review Asa's goals and therapy and adjust if needed. I never felt intimidated or nervous at these meetings. See, if I wanted more therapy or less therapy or different therapy, it was Katie who then told everyone what we needed. I never felt like I was gonna get in trouble or push my limits by asking for more. In fact, I really don't think I had to ask too much. Mostly, she looked out for Asa and she made suggestions of what he needed! But she always kept things light and fun and crazy! You need that in life!!

JoBeth at the "graduation" his summer.

JoBeth was Asa's EI teacher for the last 2 years. She quickly turned into Asa's favorite friend! No offense to the others but I think he liked that she came to his home turf!! She'd knock on the door and he'd squeal with delight, kicking his feet! He was so funny with her! These last few weeks we've been going to the daycare across from the therapy center so Asa can play with JoBeth and be exposed to other kids. JoBeth is probably glad for the swap so she didn't have to drive all the way out here and dive into our crazy house of never ending unfolded clothes and toys everywhere!! JoBeth's job was to play with Asa. She did some walking, some drawing, sensory play, eating, she just played with him anyway he was willing!

EI would pay for Asa's PT, speech/feeding and OT since insurance doesn't pay (or not enough in some cases). They set us up with our A-team of therapist! I'm not sure if how we got such a great team but I have no complaints! The fact is though that we've worked with several of the other therapist at the center and I don't think you can get a bad team!!!

Asa and Ms. Nancy

Asa doing what he does best with Ms. Nancy....the opposite of what she wants!

Asa started PT at 3 months old! That's little!! And it was in the midst of all the craziness of Asa's first year! He screamed all the time! He had terrible reflux and would arch all the time. He had no head control, no tracking toys, no desire to track toys and he puked all the time!! That's when we met Ms. Nancy! Bless her heart!! He was a miserable baby and her job was to make his body move in ways it didn't want to move! He wanted to arch back and we spent months just trying to get him to curl in! Talk about inchstones....this is an area where Asa has moved at a snails pace! I guess that is to be expected since it is the area he is most delayed. Not only did Nancy have to deal with a difficult Asa but she also had to deal with a crazy moma!! I know I asked a million questions! I still do but I try to plan better now! I'd ask questions that Nancy had no answers for like "what does he have?" and questions she wasn't supposed to answer "who is the worst pediatrician here?"! Really, she was in a tough spot!! Nancy was always very professional though! She never let Asa get away with much! If he wouldn't work on the skill she wanted, she'd just switch to another skill. No time off for pity parties here!! Don't you love it! Here lately though she started allowing time for snuggle breaks!! I think Asa finally got to her! Nancy has been a blessing in letting us borrow equipment, get our own equipment and giving advice on equipment. You can't imagine the stuff that is available and the price of it! We've also had some fun with Ms. Nancy! Asa has been the model for a class she teaches. He has helped on a study she was doing to get her doctorate and recently I videoed them for a presentation she is putting together. I told her he was willing to play anytime!

Asa with Jill at "graduation" this summer.

Nancy led us to Mrs. Jill because Asa had gotten a NG tube and there was G-tube talk. Jill's job was to do feeding therapy so Asa would avoid the G-tube. Massive fail!! Just kidding!!! Only God himself could cure that boy's feeding issues! Boy did Jill try though. I remember our first consult with her at 6 months old. I was holding Asa trying to get him to take a bottle all the while he wormed and squirmed and screamed! Seriously, I'm surprised they all didn't just smile at us and show us the door! Jill added speech once Asa got to the point he should be making some. Again, he still has no words so, FAIL! I'm so kidding!!! I love Jill to pieces!! I've often told people that Asa's insurance is paying for my therapy! And Asa has a pretty good receptive language he just doesn't use his mouth to give us words. If Nancy had to endure screaming Asa so did Jill. He hated eating and that was her job. Seriously, I would have shown us the door. Jill has stuck with him though and this spring she taught him to drink with a straw! I promise you that was life changing!!!! The room brightened and angels started singing! That is the only reason his is drinking his Pedisure now instead of tubing Pedisure! He is still so inconsistent with his eating and food choices but Jill never quits either. Tuesday was a happy day because I found out Asa can still go see Jill for feeding therapy since the school system doesn't offer feeding therapy. Happy Day!!

Jill at Chick-fil-A with Asa. His normal reaction of squealing for Jill! And she wasn't even trying to feed him!

Mr. Jim at Chick-fil-A

Asa started OT at 9 months. His original OT now works for the schools and will be his OT at school! Yay!!! When Erin left we started with Jim. Again I drove Jim crazy with my questions until he kicked me out of therapy! Kidding, again! Asa got so clingy in OT that it really was a better idea for me to not be in there. Asa did much better without me! Jim worked alot on sensory stuff and touching things, cause and effect toys, the computer. And Asa's most loved activity....the swing! Jim let Asa borrow the little power wheels that had been his own kids. And OMGoodness, this sensory stuff is slow going too! I'm not that patient! I want to offer a texture twice if he refuses it move on! If only it was that easy! Jim introduced the brushing technique we use and the music therapy we've started. I have to say, Asa is handling much more stimulation than before so something is working but you have to be so conscious of the work! Jim is so patient!

Beth at Chick-fil-A

Those are his main therapist but like I said we've worked with several of the others at the clinic. Beth filled in for Jill when Jill went on maternity leave. I think there was almost a bargaining war on who would get Asa after Jill came back! Beth came to our Chick-fil-A event and let me take her pic....little did she know! LOL

Sara with Jill's little girl, Mary, at Chick-fil-A

And Sara!!! Sara is an OT but has never been Asa's OT. She is beyond special though!!! She is so talented and she has blessed our family by sharing her talents! She is an amazing photographer and offered to take Asa's pictures this time last year. Guess what, she has offered again and we are meeting on Monday! Her talents don't stop there though. She can sew and bake and is just amazing! She was behind getting the sorority girls to work at CFA a few weeks ago. It is one thing for Asa's other therapist to do nice things for us but Sara goes out of her way to help out! Talented and generous with her gifts!!!

As a final word, they will all die of embarrassment when they read this post! They are all so humble and generous! They have all tried their best to bring out the best in Asa! I've learned a ton and feel privileged that they have let me sit in on his therapy so I can learn too!! I'm sad to move on to this new adventure called school. I know Asa will be fine. And his new therapist are friends of his old therapist. But the fact of the matter is that I've lost my playdates!! I'm thinking maybe they need someone to come clean mats or change batteries and ask a million questions! They've got my number, I'm sure they'll call any day now! HEEHEEHEE

Thanks guys for all the work you've put in for Asa. All the caring!! I got them little potted plants and wrote "Thanks for helping me grow!" on them as a gift from Asa. And I mean that, you have helped him grow. You have helped me grow. You wouldn't believe all the work that goes into teaching a body to work that doesn't want to work! But seriously, by answering my crazy questions or giving me advice, you have given me confidence and assurance to be the best mother I can be for Asa.