Thursday, October 28, 2010
Tuesday, October 26, 2010
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
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
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
Friday, October 22, 2010
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
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
So we'll press on tomorrow!
Saturday, October 16, 2010
Tuesday, October 12, 2010
Sunday, October 10, 2010
Monday, October 4, 2010
Saturday, October 2, 2010
Friday, October 1, 2010
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 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 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 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!
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!!
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!
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
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.