Thursday, October 28, 2010

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?! 

Tuesday, October 26, 2010

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!!

Monday, October 25, 2010

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!

Saturday, October 23, 2010

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!

Friday, October 22, 2010

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!

Tuesday, October 19, 2010

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!

Saturday, October 16, 2010

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?!


Tuesday, October 12, 2010

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!! ;-)

Sunday, October 10, 2010

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.....

Monday, October 4, 2010

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!

Saturday, October 2, 2010

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!







Friday, October 1, 2010

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.