Today felt like a huge step backwards in many, many ways!
Asa was crying and screaming most of the day. Not in real pain, just tired and ill! If I wasn't sitting and holding him then he was crying. When I sat him in the floor and tried to do dishes, he scooted over and sat on my feet, reaching up to play with my kneecaps and whining! At 1:30 he finally sat and played with his toys! At 2 we had to leave and by 2:30 he was a screaming mess in the van while we were in the carpool line!
And while all of that is not fun it wasn't as worrisome as the loss of tone I noticed! I'd try to walk him and he'd lock his legs and want to be held. After school I sat him in the recliner and handed him his sippy cup. He took the cup but fell over trying to hold the cup! I know that the recliner isn't supportive seating but he hasn't had a problem before. And by 6:30 tonight he was slouching and stacking while sitting in the floor.
BUT.... He was eating like a rock star! He had 1/2 a waffle and a cup of soy milk for breakfast. Then as I got my supper he got very excited so I got him a yogurt. I also gave him several bites of my taco soup and he liked it. I'm not crazy though, I only gave him a few bites!!
Tomorrow is a therapy day and so I hope he perks back up.
Monday, August 30, 2010
Sunday, August 29, 2010
A busy week!
Many times something happens during our week and I can't wait to post it to the blog. Then when I finally get around to it, I've forgotten what was so funny or important! I may have to just force myself to post every other day so that I don't skip anything. That means though that many days will just be boring!
I did finally get the flyers for the Chick-fil-A night in my hands. Asa and I went in on Friday and ate lunch. Last week I took him inside and it was a near disaster!! It was my own fault though! I knew I couldn't carry him in so I got out the umbrella stroller. Once inside I should have put him in a highchair but I didn't see one so I plopped him down with me in the booth. Ha! He gained more mobility in that 15 minutes than in the last 15 months combined!!! This time I asked if they had highchairs and one was brought to me. Along with my food and the flyers! Asa sat much better this time! Here I was so proud that he was able to sit alone that I forgot the down sides!!
Asa tried out a new toy at PT this week. It is a mobile stander. It is a stander with big wheels so he can push himself around. He took right to it at therapy. I was so tickled. This will strengthen his upper body. We brought it home but he hasn't been so thrilled with it. I'm not sure what the difference is. I hope he will take to it so he can have another way to be mobile.
Even with the mobile stander, the gait trainer and the adaptive stroller I still feel like we are missing something. I want a way for Asa to be adventurous and explore when we are out and about. I realize this is something that I want and not something Asa really wants too badly! He is usually happy to be carried, pushed or held. And I know that if he has choices it'll be like the Chick-fil-A thing, him being busy and me trying to corral. Still that is how it is supposed to be. None of this equipment we have is very transportable. I guess he just isn't ready to be on his own yet!
Asa's eating has been up and down, mostly down. He was gaggy in feeding on Tuesday but then had a record day on Wednesday. I was so excited. Everyday since then has been downhill. I even used the tube today. First time in weeks! He is refusing the Pedisure, yogurt, pudding, oatmeal, everything! He asks for food when we eat (by pointing and squealing) but he won't really eat. I'll get it all set up and then he turns his head. Frustrating!! But, tomorrow is a new day!
We have a new addition here. We got a kitten from a neighbor. I'm soooooo allergic to cats and this was going to be an outside cat. It has been outside since birth. And that may have worked here if it wasn't for the stupid neighbor dog that kills cats!!!! We tried have cats 2 times before but this stupid dog killed both of them. Once I even witnessed the dog snatch the cat and run into the woods but could do nothing. This morning we woke up at 4am to the sound of a yelping, small dog and the growl of the big, old, vicious dog. Sure enough the dog has the kitten in the woods right next to the kids tree house. I have the flashlight and Barry has the gun!! He finally dropped the cat and ran. He was too old to get out of the gully with the cat! It looked bad but the cat is playing again tonight so we are hopeful he is fine. Makes me so mad that the kids can't have a cat at their own house because of this stupid dog! So now the cat is inside and I am testing allergy meds! Benedryl knocks me out. Zyrtec seemed OK. I had the liquid for kids and I finally stopped sneezing and itching. We'll see what this week brings but I'm thinking the dog may have pushed me to my limits and the cat may be outside and the dog goes bye bye!
The kids are loving the kitten and have to assign days for it to be their pet. If he is inside I wonder if the assigned week will also be the assigned cleanup week! He has 6 toes on both front paws and was named "Toesy". The kids named him Toby Toes! Mostly he is called "cat" right now though!
Ok the benedryl kicked in I'm just gonna hit "publish" and not even proof read! Have fun with the red pens!!!
I did finally get the flyers for the Chick-fil-A night in my hands. Asa and I went in on Friday and ate lunch. Last week I took him inside and it was a near disaster!! It was my own fault though! I knew I couldn't carry him in so I got out the umbrella stroller. Once inside I should have put him in a highchair but I didn't see one so I plopped him down with me in the booth. Ha! He gained more mobility in that 15 minutes than in the last 15 months combined!!! This time I asked if they had highchairs and one was brought to me. Along with my food and the flyers! Asa sat much better this time! Here I was so proud that he was able to sit alone that I forgot the down sides!!
Asa tried out a new toy at PT this week. It is a mobile stander. It is a stander with big wheels so he can push himself around. He took right to it at therapy. I was so tickled. This will strengthen his upper body. We brought it home but he hasn't been so thrilled with it. I'm not sure what the difference is. I hope he will take to it so he can have another way to be mobile.
Even with the mobile stander, the gait trainer and the adaptive stroller I still feel like we are missing something. I want a way for Asa to be adventurous and explore when we are out and about. I realize this is something that I want and not something Asa really wants too badly! He is usually happy to be carried, pushed or held. And I know that if he has choices it'll be like the Chick-fil-A thing, him being busy and me trying to corral. Still that is how it is supposed to be. None of this equipment we have is very transportable. I guess he just isn't ready to be on his own yet!
Asa's eating has been up and down, mostly down. He was gaggy in feeding on Tuesday but then had a record day on Wednesday. I was so excited. Everyday since then has been downhill. I even used the tube today. First time in weeks! He is refusing the Pedisure, yogurt, pudding, oatmeal, everything! He asks for food when we eat (by pointing and squealing) but he won't really eat. I'll get it all set up and then he turns his head. Frustrating!! But, tomorrow is a new day!
We have a new addition here. We got a kitten from a neighbor. I'm soooooo allergic to cats and this was going to be an outside cat. It has been outside since birth. And that may have worked here if it wasn't for the stupid neighbor dog that kills cats!!!! We tried have cats 2 times before but this stupid dog killed both of them. Once I even witnessed the dog snatch the cat and run into the woods but could do nothing. This morning we woke up at 4am to the sound of a yelping, small dog and the growl of the big, old, vicious dog. Sure enough the dog has the kitten in the woods right next to the kids tree house. I have the flashlight and Barry has the gun!! He finally dropped the cat and ran. He was too old to get out of the gully with the cat! It looked bad but the cat is playing again tonight so we are hopeful he is fine. Makes me so mad that the kids can't have a cat at their own house because of this stupid dog! So now the cat is inside and I am testing allergy meds! Benedryl knocks me out. Zyrtec seemed OK. I had the liquid for kids and I finally stopped sneezing and itching. We'll see what this week brings but I'm thinking the dog may have pushed me to my limits and the cat may be outside and the dog goes bye bye!
The kids are loving the kitten and have to assign days for it to be their pet. If he is inside I wonder if the assigned week will also be the assigned cleanup week! He has 6 toes on both front paws and was named "Toesy". The kids named him Toby Toes! Mostly he is called "cat" right now though!
Ok the benedryl kicked in I'm just gonna hit "publish" and not even proof read! Have fun with the red pens!!!
Wednesday, August 25, 2010
Some exciting plans!
I can't believe we are almost into September! This year is flying by!!
The third week of September is Mitochondrial Disease Awareness Week. This year it is September 19-25. Tennessee is one of only a few states that has a permanent resolution for this awareness week. Many states have to have it renewed each year or have no awareness week at all!
Last year I participated in with the Nashville Mito Chapter with a Maggie Moo's ice cream fundraiser and awareness night. I had some wonderful people come to our local store and scoop ice cream while I shared about mito. We really had a crowd!!! I was shocked! I wish I could remember the total that our store sent into the UMDF but really people, that was a whole year ago!! :) The money isn't the only reason to do these events though. I met new people and hopefully got the word out about mito!!
This year I've contacted our local Chik-fil-A. After several back and forth phone calls and a couple of stops in the store, we have confirmed that Tuesday, Sept. 21 from 5-8pm will be Mito Awareness Night!!! YAY! Chik-fil-A will make a donation for anyone who eats at the Vann Dr. location on that night and mentions they are there for mito or Asa. The key point is that you HAVE to mention you are there for mito! It won't be a straight percentage of sales. I also need some table cleaners/servers who might help keep things flowing and maybe unknowing patrons will give a tip as a donation. I'll get to have a table and some info set up to help raise awareness. I'm really excited about this and have wanted to share but I wanted to be certain we had a commitment!
So who wants some Chick-fil-A?!!!! And spread the word!
Saturday, August 21, 2010
A boring week!
I haven't posted because not much has been going on! How's that for boring!! I can do boring!
Asa has slowed down on his eating. We still haven't used the pump but there are times we are BEGGING him to drink from his cup! And forget about eating real food! He has had his moments but he isn't as eager as was last week. He is also more floopy and less independent. Just when we get a little taste of progress we are knocked back down. This time so far we have only stumbled backwards and not fallen completely on our behinds!! Hopefully, he'll turn things back around this next week.
We did go to WIC this week. I have a love/hate relationship with this program! I'm thankful they cover his Pedisure and was beyond thankful when they covered his Neocate!! However I hate jumping through the hoops and since we are a "special" case, we are also a confusing case and apparently a learning case each appt. This time I called the director and went in on a day she was available. We were in and out in an hour!!! The last 2 times it has taken over an hour just to figure out how to get us in the computer! At this appt I also got the heads up that WIC was changing and TNCare would now be picking up all tube fed formulas. So I've gotten what I wanted many moons ago. TNCare will send his Pedisure to our door each month along with his tube supplies. Except they send cans and Asa won't drink the Pedisure from a can. It smells real metallic, I'm not tasting either of them! When we were just using the tube, this would have been my dream come true! Not so much now. We have 3 months to get him to drink it before I run out of WIC vouchers for the bottles.
I had hoped I could get him to drink regular milk and I tried an ounce or two on Tuesday at breakfast. It all went well until we were in carpool line at 3pm! He started just screaming in pain and gagging. I tried lots of stuff and can only assume it was the milk earlier. I tried hooking up a farrell bag but was too late and he puked everywhere. Then he wouldn't drain. I checked the bag over and over while he was screaming in pain and gagging and Anna was gagging! Then I got out a med. syringe but couldn't get anything to move. I tried flushing the button. I finally got out a 2oz. syringe and pushed water in and pulled it out. Turns out oatmeal doesn't travel through the tube so well. But why at 3 did he still have oatmeal from 8am in his belly. It was no fun having to manually empty his tummy but he felt much better.
On Friday Asa had PT and then we see his EI teacher. Last week she and the SLP thought it'd be a good idea for Asa to get his EI visit at the daycare they have across the street! Huh, what do they know! LOL, really I thought this was an excellent idea and I'm glad Asa can get a small taste of what school will be like in a few months! So this week he went into the classroom at the daycare. There were only 3 girls in there so it was a small class. Asa seemed excited by the room and toys. He tried out several centers and had a big time. There were some loud crashes and some crying in the room and Asa didn't even startle! I think he really liked it! These kids were all around a year old and that seemed perfect for Asa. I wouldn't mind him going into a classroom like this. Now a room of 3 and 4 year olds is another matter!!
Here are some pics of his daycare adventure!
Asa has slowed down on his eating. We still haven't used the pump but there are times we are BEGGING him to drink from his cup! And forget about eating real food! He has had his moments but he isn't as eager as was last week. He is also more floopy and less independent. Just when we get a little taste of progress we are knocked back down. This time so far we have only stumbled backwards and not fallen completely on our behinds!! Hopefully, he'll turn things back around this next week.
We did go to WIC this week. I have a love/hate relationship with this program! I'm thankful they cover his Pedisure and was beyond thankful when they covered his Neocate!! However I hate jumping through the hoops and since we are a "special" case, we are also a confusing case and apparently a learning case each appt. This time I called the director and went in on a day she was available. We were in and out in an hour!!! The last 2 times it has taken over an hour just to figure out how to get us in the computer! At this appt I also got the heads up that WIC was changing and TNCare would now be picking up all tube fed formulas. So I've gotten what I wanted many moons ago. TNCare will send his Pedisure to our door each month along with his tube supplies. Except they send cans and Asa won't drink the Pedisure from a can. It smells real metallic, I'm not tasting either of them! When we were just using the tube, this would have been my dream come true! Not so much now. We have 3 months to get him to drink it before I run out of WIC vouchers for the bottles.
I had hoped I could get him to drink regular milk and I tried an ounce or two on Tuesday at breakfast. It all went well until we were in carpool line at 3pm! He started just screaming in pain and gagging. I tried lots of stuff and can only assume it was the milk earlier. I tried hooking up a farrell bag but was too late and he puked everywhere. Then he wouldn't drain. I checked the bag over and over while he was screaming in pain and gagging and Anna was gagging! Then I got out a med. syringe but couldn't get anything to move. I tried flushing the button. I finally got out a 2oz. syringe and pushed water in and pulled it out. Turns out oatmeal doesn't travel through the tube so well. But why at 3 did he still have oatmeal from 8am in his belly. It was no fun having to manually empty his tummy but he felt much better.
On Friday Asa had PT and then we see his EI teacher. Last week she and the SLP thought it'd be a good idea for Asa to get his EI visit at the daycare they have across the street! Huh, what do they know! LOL, really I thought this was an excellent idea and I'm glad Asa can get a small taste of what school will be like in a few months! So this week he went into the classroom at the daycare. There were only 3 girls in there so it was a small class. Asa seemed excited by the room and toys. He tried out several centers and had a big time. There were some loud crashes and some crying in the room and Asa didn't even startle! I think he really liked it! These kids were all around a year old and that seemed perfect for Asa. I wouldn't mind him going into a classroom like this. Now a room of 3 and 4 year olds is another matter!!
Here are some pics of his daycare adventure!
This was Asa's first stop and he may have wanted to stay in this soft play area all day! Kinda like a play pen for big kids!
He liked the bead maze. He was standing alone like this for a long time. Well, technically he was propping himself on the table.
I got him interested in this bus by trying to get him to put the people inside the bus. He was only interested in the door! Open, close, open, close!
After therapy I took him inside Chick-fil-A by myself. Believe me, this trip is worthy of it's own post! His cup was malfunctioning and he couldn't get anything out of it. I asked for a little cup and lid and poured his Pedisure in it!
Sunday, August 15, 2010
Asa the Adventurer
I usually wouldn't use the words Asa and adventure in the same sentence. Probably not even in the same paragraph! He just isn't a go getter!! He has never had a desire to try new things. Not new foods, not new routines, not new people, not new skills, not new toys. Nope, Asa has never been one for adventures!
Until lately that is! He has really been more interested in food than ever before. He usually tries a bite of whatever we are having. Yesterday I made chocolate chip mini muffins for breakfast and was giving him pinches. He had taken several pieces and seemed tired of it so I stopped and went on back to the computer. After playing a few minutes he started grunting at me. When I looked at him he pointed to the muffin laying in front of him and wanted more! Ha!!! I happily obliged even though he could have asked a little nicer! :) And he was more than able to self feed the bites I had for him!
Today took the cake though! After lunch at my moms, Asa was a happy scooting boy! It was a loud house today too! It was too hot to go outside so all the kids were inside and loud! Asa was fine with the noise. Never bothered him once! He scooted and played. He played with the Connect Four game. He scooted himself into the box!! I didn't see that and I wasn't totally convinced he didn't have "help" getting in but everyone assured me that he did it himself! He also quietly (sneakily?) got the Monopoly money from the banker and had a time scattering and playing in it until he got busted!! I was so proud of him today! He handled lots of noise and excitement. He was entertaining himself. It was a great Sunday afternoon!
Once we got home he did get sick though. I don't know what set him off but he lost it. I left him with Barry and went on to church. When we got home Barry was in the kitchen and Asa was no where around! This is the tale Barry told...
After Asa woke up from his crash, he was busy sitting on Barry so Barry put him down so he could play. Asa scooted over to his toys and was playing happily. Until he pulled a lamp over! The lamp got caught on the treadmill so it didn't crash but it spilled dead ladybugs out all over the treadmill! As Barry is picking up the lamp and getting it secure and arranging the toys, Asa scoots over to play in the dead ladybugs! GROSS!! When Barry gets him out of that mess, he notices that Asa is dirty and so is the floor! And no poopy diaper story would be complete unless the shirt got so dirty that it had to be cut off and much wiping took place to get Asa back into the clean!! So now Barry has to clean the changing area and the floor! He sits Asa in the kitchen floor while he mixes up the carpet cleaner and goes into the living room to clean the carpet. When he gets done he notices that Asa isn't in the kitchen anymore but in our BATHROOM!!! Asa has never ventured into our bedroom, much less our bathroom! And that is when we come in from church!!! Asa squealed with delight when the big kids found him in the bathroom. Like he was leading a game of hide and seek! So cute...for me, I missed the mess this time!!!
I would have never thought Asa would get into so much trouble as he did today. Just a busy exploring boy! Now I'm not so sure if I'll be this thrilled with this new Asa the Adventure by this time tomorrow!
Until lately that is! He has really been more interested in food than ever before. He usually tries a bite of whatever we are having. Yesterday I made chocolate chip mini muffins for breakfast and was giving him pinches. He had taken several pieces and seemed tired of it so I stopped and went on back to the computer. After playing a few minutes he started grunting at me. When I looked at him he pointed to the muffin laying in front of him and wanted more! Ha!!! I happily obliged even though he could have asked a little nicer! :) And he was more than able to self feed the bites I had for him!
Today took the cake though! After lunch at my moms, Asa was a happy scooting boy! It was a loud house today too! It was too hot to go outside so all the kids were inside and loud! Asa was fine with the noise. Never bothered him once! He scooted and played. He played with the Connect Four game. He scooted himself into the box!! I didn't see that and I wasn't totally convinced he didn't have "help" getting in but everyone assured me that he did it himself! He also quietly (sneakily?) got the Monopoly money from the banker and had a time scattering and playing in it until he got busted!! I was so proud of him today! He handled lots of noise and excitement. He was entertaining himself. It was a great Sunday afternoon!
Once we got home he did get sick though. I don't know what set him off but he lost it. I left him with Barry and went on to church. When we got home Barry was in the kitchen and Asa was no where around! This is the tale Barry told...
After Asa woke up from his crash, he was busy sitting on Barry so Barry put him down so he could play. Asa scooted over to his toys and was playing happily. Until he pulled a lamp over! The lamp got caught on the treadmill so it didn't crash but it spilled dead ladybugs out all over the treadmill! As Barry is picking up the lamp and getting it secure and arranging the toys, Asa scoots over to play in the dead ladybugs! GROSS!! When Barry gets him out of that mess, he notices that Asa is dirty and so is the floor! And no poopy diaper story would be complete unless the shirt got so dirty that it had to be cut off and much wiping took place to get Asa back into the clean!! So now Barry has to clean the changing area and the floor! He sits Asa in the kitchen floor while he mixes up the carpet cleaner and goes into the living room to clean the carpet. When he gets done he notices that Asa isn't in the kitchen anymore but in our BATHROOM!!! Asa has never ventured into our bedroom, much less our bathroom! And that is when we come in from church!!! Asa squealed with delight when the big kids found him in the bathroom. Like he was leading a game of hide and seek! So cute...for me, I missed the mess this time!!!
I would have never thought Asa would get into so much trouble as he did today. Just a busy exploring boy! Now I'm not so sure if I'll be this thrilled with this new Asa the Adventure by this time tomorrow!
Friday, August 13, 2010
Mostly pictures...
I have several groups of pictures I need to post. I'm sure I could ramble on and on about the activity or circumstances but I'll spare you all the details and do a mostly picture post!
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Asa loves the piano and doesn't miss a chance to bang away. We started out using the piano to distract him while he was in the stander or the high/lo chair. Then he progressed to the gait trainer with the seat. Recently, he could use the gait trainer without the seat but who knew he could play with no support at all!!!! He played like this for a second and then propped up on his forearms and clapped for himself! Hehehe!
Oh and we tried Cade's Under Armor shirt on him to see if it'd keep him cool. The heat index was 117 again today. Getting in and out of the car is brutal for him.
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I tried cooling him off with a strawberry and banana smoothie from McD's today. I had a free coupon!!! He drank a few drinks and then would cry out and throw the cup in the floor. I'd pick the cup up and he'd cry for it back. I finally figured out he was probably getting a brain freeze!
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Last Sunday my mom's work had tickets to the local minor league baseball game up for grabs. Oh, did I mention it was a skybox! Score!! Did I also mention that when we got to the game we found out kids eat for free! Hotdog, chips and drink for free!!! Score!!!!!
Some of us were very into the game.
Some, not so much!
But everyone had a good time!
It was sooo unreal hot! We watched from our balcony as a mother tried to keep her baby cool and happy. It wasn't going so well. My saint of a mother went down and invited her to come cool off in the skybox. She accepted and we met a new friend. You know she was hot if she stayed in there with our bunch, you saw the picture! Have I mentioned how kind and generous my sweet Moma is!!! I'm so blessed!
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Does anyone know a good dentist!
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Asa can identify his mouth, ears, hair, toes, eyes and......
NOSE! We don't ask him to show off this skill in public much!
Thursday, August 12, 2010
To school or not to school
Before you start, pardon all typos! I'm blogging via mobile device because we are having a storm and
can't use the big computer. Also can't edit very well! Carry on...
I'm usually behind on things. I forget appointments until the last minute. If I don't put an appointment on the calendar you can count on it being overlooked!
And this is how I thought Asa's IEP for school was going to be! He won't start school until he turns 3 in October but before then we have to have a big meeting with EI, teachers, therapist, school officals, doctors reports, me and Asa. And there are 2 school choices for Asa. That is no small feat!!
Then somehow I messed up n the date of the IEP! I wrote it down as August 20 instead of September 20! Quite a difference! So in a panic last week I called one of the schools for 3 year olds with a special education class. I had an appointment to tour the school at 10:00am this morning. Boy, I was nervous!!! I was jittery, queasy, nervous!!! Not a good day to try out a new deoderant! It was only after I got to school #1 that they told me the IEP was a month away not a week away! That sure took the edge off!
School #1 was good. It was fine. The people were all very nice. I met the PT who will see him no matter which school he is in. I saw the gym and the cafeteria. I saw one classroom and met the teacher. The class looked like a regular pre-K class. There was circle time and blocks, books and tables, art eisles and paint. There was only 2 little boys in the class at the time. Both classes are half days so the afternoon crowd may have been bigger. There was a teacher and assistant in each class and usually 5 or 6 kids. Not bad numbers! The whole school is a pre-K school with a mix of special ed and typical classes.
While I was at school #1, they mentioned a "medically fragile" class at a nearby school. I've heard of this class before but never really thought of Asa as medically fragile. I thought I might as well try to tour his school and medically fragile class today too. Asa and I had an hour to kill and then off we went to school #2.
Like I said, both classes have half days and we arrived while the class was between students. The teacher had already heard of Asa. Does this mean he already has a reputation!! NO, they just have to plan for a certain amount of students so they already have an idea of students that might be coming in! Anyway, this classroom looked morelike a therapy gym to me. There were gait trainers and standers around for the kids to use during the day, not just PT time. There was touch screen computers and switch toys. They still had circle time but with rifton chairs. And I was drawn to the spectacular changing area! Not sure what it says about me that I was excited about the changing area!! Lol!
So what did Asa think about school?! He started out the morning not wanting to eat. He fussed and fitted. I finally said "if you want to go to school, you have to drink you cup". And he stopped fighting, picked up his cup and drank it down!! Really!!! At school #1 he was fine. He was friendly with the folks and didn't really fuss. At school #2 Asa was good as well. Then he reached up for the teacher from his chair!! She got him out and he started stepping around the room exploring! He went to the mat, played with a toy or two, walked around some more!!! He made himself at home!! He didn't want to leave! Before we left the teacher gave me her home and cell number! Now that is a brave woman!!!
So as you can probably tell, Asa and I both liked the medically fragile class at school #2! now I almost hate to wait until October for him to start! There are other medical kind of stuff and IEP stuff but so far so good and even a month early!!
can't use the big computer. Also can't edit very well! Carry on...
I'm usually behind on things. I forget appointments until the last minute. If I don't put an appointment on the calendar you can count on it being overlooked!
And this is how I thought Asa's IEP for school was going to be! He won't start school until he turns 3 in October but before then we have to have a big meeting with EI, teachers, therapist, school officals, doctors reports, me and Asa. And there are 2 school choices for Asa. That is no small feat!!
Then somehow I messed up n the date of the IEP! I wrote it down as August 20 instead of September 20! Quite a difference! So in a panic last week I called one of the schools for 3 year olds with a special education class. I had an appointment to tour the school at 10:00am this morning. Boy, I was nervous!!! I was jittery, queasy, nervous!!! Not a good day to try out a new deoderant! It was only after I got to school #1 that they told me the IEP was a month away not a week away! That sure took the edge off!
School #1 was good. It was fine. The people were all very nice. I met the PT who will see him no matter which school he is in. I saw the gym and the cafeteria. I saw one classroom and met the teacher. The class looked like a regular pre-K class. There was circle time and blocks, books and tables, art eisles and paint. There was only 2 little boys in the class at the time. Both classes are half days so the afternoon crowd may have been bigger. There was a teacher and assistant in each class and usually 5 or 6 kids. Not bad numbers! The whole school is a pre-K school with a mix of special ed and typical classes.
While I was at school #1, they mentioned a "medically fragile" class at a nearby school. I've heard of this class before but never really thought of Asa as medically fragile. I thought I might as well try to tour his school and medically fragile class today too. Asa and I had an hour to kill and then off we went to school #2.
Like I said, both classes have half days and we arrived while the class was between students. The teacher had already heard of Asa. Does this mean he already has a reputation!! NO, they just have to plan for a certain amount of students so they already have an idea of students that might be coming in! Anyway, this classroom looked morelike a therapy gym to me. There were gait trainers and standers around for the kids to use during the day, not just PT time. There was touch screen computers and switch toys. They still had circle time but with rifton chairs. And I was drawn to the spectacular changing area! Not sure what it says about me that I was excited about the changing area!! Lol!
So what did Asa think about school?! He started out the morning not wanting to eat. He fussed and fitted. I finally said "if you want to go to school, you have to drink you cup". And he stopped fighting, picked up his cup and drank it down!! Really!!! At school #1 he was fine. He was friendly with the folks and didn't really fuss. At school #2 Asa was good as well. Then he reached up for the teacher from his chair!! She got him out and he started stepping around the room exploring! He went to the mat, played with a toy or two, walked around some more!!! He made himself at home!! He didn't want to leave! Before we left the teacher gave me her home and cell number! Now that is a brave woman!!!
So as you can probably tell, Asa and I both liked the medically fragile class at school #2! now I almost hate to wait until October for him to start! There are other medical kind of stuff and IEP stuff but so far so good and even a month early!!
Tuesday, August 10, 2010
And the streak ends...
Sort of.
Asa puked today! First time in 2 weeks. We haven't used the tube in 2 weeks either, until today. He has eaten real breakfast every morning for a whole week. Even if Sunday it was pudding while he was distracted in the tub. This morning I actually let myself have a thought about not having the tube anymore. I knew I shouldn't have thought it out loud. I don't really mind the tube being around. It doesn't hurt anything. It doesn't take any extra effort. We've been blessed to not have to deal with too much granulation tissue.
But today zapped me back to reality! I think Asa overheated and that is why he got sick. It was hot here today and we had several in and out errands. No time for the van to cool off in between stops. We got to our last school pick up and Asa started puking. Apparently I've lost my game cause we made a mess!!! I have to say when he was on a 100% liquid diet it was liquid in and liquid out. Not a big deal for me. Solids aren't so easy!!
Once we got home he got sick again and had diarrhea 3 times. Something sure caused his tummy to revolt. I still blame the heat. He is fine now so I don't think it was a 4 hour virus! This is just further proof that Asa's GI system is a picky thing! There is a fine line and if you cross his body, the GI system will revolt! And that ain't purtty!
On the plus side and something totally different for Asa, all of this didn't deter him from eating and wanting to eat!!! He is so interested in food lately. He has always loved plates, bowls, cups, spoons, forks but not the food!!! Then last week he started trying lots of stuff on our plate. He opens right up for it. And tonight at supper was no different! He had mashed potatoes, peas and even mac and cheese.
By far his most amazing interest involved bananas today!!! At the grocery store he pointed to them. This in itself is amazing enough. I picked a bunch out and sat it in his lap so he could investigate. We play touch and feel at the grocery store a lot. This may be why it takes me forever and a day to buy groceries! He usually rejects the object after just a few seconds and a pat or poke if I'm lucky. But today he really, really liked the bananas! He held onto them for so long. He was only slightly distracted by the plastic baggie I put the green pepper in.
As I loaded the groceries in the car I kept out one banana in hopes he'd try it for a snack as we waited in the school pick up line. This is his usual mid afternoon snack routine. Today this is also when he puked all over everything. So the banana wasn't even brought up! When we got home however he picked it up and started playing with the lone banana again. I decided to give it a try.
Asa played with the open peel. He poked at the exposed banana. He "smelled" the banana in my hand. He let me put pinched off tiny bites into his mouth. He licked the banana while I held it. He held the end of the banana still in the peel and twirled it around. He was having a good time with his banana! Until he puked again! I think he just got choked up on a piece that was on his tongue. And even after getting sick he opened back up for another pinch!!! That is amazing!!!
After he had his PJs on and he night time cup of Pedisure, Asa started scooting around the house. He scooted into the kitchen and started playing with the bananas again!! Cade or Gracie prompted him to start scooting back into the living room with a big bunch of bananas. It was a sight. Someone finally broke off just one banana for him. I rocked him to sleep while he held the beloved banana. I tried taking it away but he clamored after it. And he doesn't clamor for much so I decided he must REALLY want to hold that banana. I didn't let him sleep with it though. Last night he went to bed with a sports jug lid! Why he won't have a "normal" lovie is beyond me!!!
So all of the that boils down to:
Asa was eating good.
Asa got sick.
Asa still eating OK.
The end!
Asa puked today! First time in 2 weeks. We haven't used the tube in 2 weeks either, until today. He has eaten real breakfast every morning for a whole week. Even if Sunday it was pudding while he was distracted in the tub. This morning I actually let myself have a thought about not having the tube anymore. I knew I shouldn't have thought it out loud. I don't really mind the tube being around. It doesn't hurt anything. It doesn't take any extra effort. We've been blessed to not have to deal with too much granulation tissue.
But today zapped me back to reality! I think Asa overheated and that is why he got sick. It was hot here today and we had several in and out errands. No time for the van to cool off in between stops. We got to our last school pick up and Asa started puking. Apparently I've lost my game cause we made a mess!!! I have to say when he was on a 100% liquid diet it was liquid in and liquid out. Not a big deal for me. Solids aren't so easy!!
Once we got home he got sick again and had diarrhea 3 times. Something sure caused his tummy to revolt. I still blame the heat. He is fine now so I don't think it was a 4 hour virus! This is just further proof that Asa's GI system is a picky thing! There is a fine line and if you cross his body, the GI system will revolt! And that ain't purtty!
On the plus side and something totally different for Asa, all of this didn't deter him from eating and wanting to eat!!! He is so interested in food lately. He has always loved plates, bowls, cups, spoons, forks but not the food!!! Then last week he started trying lots of stuff on our plate. He opens right up for it. And tonight at supper was no different! He had mashed potatoes, peas and even mac and cheese.
By far his most amazing interest involved bananas today!!! At the grocery store he pointed to them. This in itself is amazing enough. I picked a bunch out and sat it in his lap so he could investigate. We play touch and feel at the grocery store a lot. This may be why it takes me forever and a day to buy groceries! He usually rejects the object after just a few seconds and a pat or poke if I'm lucky. But today he really, really liked the bananas! He held onto them for so long. He was only slightly distracted by the plastic baggie I put the green pepper in.
As I loaded the groceries in the car I kept out one banana in hopes he'd try it for a snack as we waited in the school pick up line. This is his usual mid afternoon snack routine. Today this is also when he puked all over everything. So the banana wasn't even brought up! When we got home however he picked it up and started playing with the lone banana again. I decided to give it a try.
Asa played with the open peel. He poked at the exposed banana. He "smelled" the banana in my hand. He let me put pinched off tiny bites into his mouth. He licked the banana while I held it. He held the end of the banana still in the peel and twirled it around. He was having a good time with his banana! Until he puked again! I think he just got choked up on a piece that was on his tongue. And even after getting sick he opened back up for another pinch!!! That is amazing!!!
After he had his PJs on and he night time cup of Pedisure, Asa started scooting around the house. He scooted into the kitchen and started playing with the bananas again!! Cade or Gracie prompted him to start scooting back into the living room with a big bunch of bananas. It was a sight. Someone finally broke off just one banana for him. I rocked him to sleep while he held the beloved banana. I tried taking it away but he clamored after it. And he doesn't clamor for much so I decided he must REALLY want to hold that banana. I didn't let him sleep with it though. Last night he went to bed with a sports jug lid! Why he won't have a "normal" lovie is beyond me!!!
So all of the that boils down to:
Asa was eating good.
Asa got sick.
Asa still eating OK.
The end!
Saturday, August 7, 2010
Do you have your party hats ready?
It is time to celebrate some inchstones, some one say milestones even!
For the first time ever Asa ate oatmeal in feeding therapy on Tuesday. Then again at home on Wednesday, Thursday and today!!! He had yogurt on Friday. So if you are keeping count, he has eaten a real breakfast for 5 days in a row!!! That is a record! He is also trying new foods at supper at night. He is pretty willing and that alone is shouting worthy!!
In other eating news, he likes sweet tea! I know, shocking right! Who doesn't like sweet tea. I actually used tea as a bribe on Friday! He needed a diaper change while we were in Target. He hates those wall things and in normal circumstances I take him back out and change him in the van. Friday however, the van would have been boiling so we headed to the hidden, family bathroom in Target. He started freaking out when I laid him on the wall changing station. I reasoned with him though and promised my tea if he'd lay still and let me change him. I may have chanted "you can have Moma's tea" in a slow calming voice the whole time I was changing him. Hey, whatever works!! He did great and had my tea sucked down by the time I cleaned up, washed my hands and got the buggy out of the bathroom! So I will never leave the house without gallons of sweet tea to use as various bribes! I should remember to put that in his IEP!!
And being able to reason with Asa is huge too!!! Since he doesn't talk or sign I think I treat him much like a baby. He is dirty so I get him up from playing and change him. He needs to be fed so I sit him in his chair and fed him. He needs to get dressed so I put clothes on him. The last few weeks though I've been asking his opinion and giving him choices. I give a choice of what to eat. I hold up two shirts and let him pick. This may sound simple but it has helped his fits! There are tons of little examples but the point is this boy has opinions and ideas and plans and he needs to be heard, with or without words!!
Speaking of fits and freaking out, he hasn't gotten startled to the point of puking in a while either. Really, how do you go from 1 or 2 a day to none in a week! I almost set him off though and I really should have known better! We were killing time in the toy store one day. As soon as we walked in I spotted some cute, fuzzy rocking horses on the floor. Now anyone who has followed us for very long knows that Asa has major sensory issues to fuzzy things and doesn't have good balance! So you'd think his own mother would have at least thought twice before she plunked him out of the buggy and onto the rocking horse! He screeched like I've never heard before!! And I was holding onto him, imagine if I'd let him go to sit alone!!! I spent the rest of the afternoon trying to calm him and keep him from puking!!
He has also started giving hugs!!! For a while he has leaned into you when ask for a hug but lately he has been squeezing and patting you! So adorable! I love those tiny squeezes!! He has also starting holding onto my ear when I pick him up. I'm not sure what that is about but my ear is a little sore. He likes to poke at my knuckles on my hands, my elbow and the bones in my hands. Any hard, boney place he picks and pokes. Maybe I have sensory issues too, but this drives me crazy!!
Now for the biggest news!!! Asa had an amazing PT session on Friday! He walked while holding onto the PTs one hand and supporting himself with the other on a low table!!! Thankfully, I had my handy cell phone video and while the quality is not good I put it on Youtube! My first ever Youtube video! Asa first ever one hand walk!!! At one point in the video he lets go and I say "don't let go" and the PT says "yes, let go"!! Can you believe I said that!!! I must be off my game this week!!!
Ok, I tried loading the video on here but something isn't working so here is the link instead!
A huge missing link in his development is that he doesn't support himself with his arms. He doesn't crawl and doesn't bear weight on his arms. I've made him start lifting weights!! He loves to sit behind the treadmill and play. So I put the 2 lbs. dumbbells near him and he lifts them up and onto the treadmill. I'm not sure if this is helping but he has been using him arms to bear weight in different ways. Maybe it helped him be secure enough that he walked holding onto that table at PT.
He ended PT by riding a tricycle! He pushed the top peddle down twice but the bottom foot came off. If it was adapted a little I think he could peddle. He loved it either way!!!
So Asa is eating, making huge progress in PT and reasoning and interacting like never before! This is as close to "normal" as we've ever been!!! While I'm jumping for joy I can't help but be sad too. Each time we have made progress, it hasn't been long until he has had a loss of skills too. 1 step forward, 2 steps back. I guess as long as he keeps gaining I should be grateful but it makes me leery of the forward progress each time. I'll just try to enjoy these new skills all the while praying he doesn't get sick and lose them again.
I've thought alot about why we are seeing such a surge in progress. We did double his CoQ10 on Dr. K's orders. Could this be the reason? Could mega doses of Q10 really be the miracle for certain types of mito? I don't know but it is interesting to see so much overall activity in Asa. Usually he is stronger in one area and the others stay the same or decrease. Not now though! He is amazing me in all areas!!
I mostly think that it is because Asa is surrounded and covered in prayer each day. I believe that God has His powerful, healing, comforting, peace giving hands on Asa. Asa's life, and ours too, are all on God's schedule and plan. Not on mine or the doctors or the therapist. We could try all the medical stuff thrown at us, do all the therapy he could handle or we could afford, see all the specialist and gurus but God is in control of this little boy, of this home, of this family! If tomorrow we are back on the pump, back to the low energy, back to the crabby and needing to be held all day, well, that too will be in God's control. I may not like it as much as I love this surge but I'll rejoice in that too!
Oh and I wanted to end on this funny... Last night I was holding Asa and Barry kissed me on the cheek. Asa teared up and started bawling! It was like his heart was broken. So sweet!!!
For the first time ever Asa ate oatmeal in feeding therapy on Tuesday. Then again at home on Wednesday, Thursday and today!!! He had yogurt on Friday. So if you are keeping count, he has eaten a real breakfast for 5 days in a row!!! That is a record! He is also trying new foods at supper at night. He is pretty willing and that alone is shouting worthy!!
In other eating news, he likes sweet tea! I know, shocking right! Who doesn't like sweet tea. I actually used tea as a bribe on Friday! He needed a diaper change while we were in Target. He hates those wall things and in normal circumstances I take him back out and change him in the van. Friday however, the van would have been boiling so we headed to the hidden, family bathroom in Target. He started freaking out when I laid him on the wall changing station. I reasoned with him though and promised my tea if he'd lay still and let me change him. I may have chanted "you can have Moma's tea" in a slow calming voice the whole time I was changing him. Hey, whatever works!! He did great and had my tea sucked down by the time I cleaned up, washed my hands and got the buggy out of the bathroom! So I will never leave the house without gallons of sweet tea to use as various bribes! I should remember to put that in his IEP!!
And being able to reason with Asa is huge too!!! Since he doesn't talk or sign I think I treat him much like a baby. He is dirty so I get him up from playing and change him. He needs to be fed so I sit him in his chair and fed him. He needs to get dressed so I put clothes on him. The last few weeks though I've been asking his opinion and giving him choices. I give a choice of what to eat. I hold up two shirts and let him pick. This may sound simple but it has helped his fits! There are tons of little examples but the point is this boy has opinions and ideas and plans and he needs to be heard, with or without words!!
Speaking of fits and freaking out, he hasn't gotten startled to the point of puking in a while either. Really, how do you go from 1 or 2 a day to none in a week! I almost set him off though and I really should have known better! We were killing time in the toy store one day. As soon as we walked in I spotted some cute, fuzzy rocking horses on the floor. Now anyone who has followed us for very long knows that Asa has major sensory issues to fuzzy things and doesn't have good balance! So you'd think his own mother would have at least thought twice before she plunked him out of the buggy and onto the rocking horse! He screeched like I've never heard before!! And I was holding onto him, imagine if I'd let him go to sit alone!!! I spent the rest of the afternoon trying to calm him and keep him from puking!!
He has also started giving hugs!!! For a while he has leaned into you when ask for a hug but lately he has been squeezing and patting you! So adorable! I love those tiny squeezes!! He has also starting holding onto my ear when I pick him up. I'm not sure what that is about but my ear is a little sore. He likes to poke at my knuckles on my hands, my elbow and the bones in my hands. Any hard, boney place he picks and pokes. Maybe I have sensory issues too, but this drives me crazy!!
Now for the biggest news!!! Asa had an amazing PT session on Friday! He walked while holding onto the PTs one hand and supporting himself with the other on a low table!!! Thankfully, I had my handy cell phone video and while the quality is not good I put it on Youtube! My first ever Youtube video! Asa first ever one hand walk!!! At one point in the video he lets go and I say "don't let go" and the PT says "yes, let go"!! Can you believe I said that!!! I must be off my game this week!!!
Ok, I tried loading the video on here but something isn't working so here is the link instead!
A huge missing link in his development is that he doesn't support himself with his arms. He doesn't crawl and doesn't bear weight on his arms. I've made him start lifting weights!! He loves to sit behind the treadmill and play. So I put the 2 lbs. dumbbells near him and he lifts them up and onto the treadmill. I'm not sure if this is helping but he has been using him arms to bear weight in different ways. Maybe it helped him be secure enough that he walked holding onto that table at PT.
He ended PT by riding a tricycle! He pushed the top peddle down twice but the bottom foot came off. If it was adapted a little I think he could peddle. He loved it either way!!!
So Asa is eating, making huge progress in PT and reasoning and interacting like never before! This is as close to "normal" as we've ever been!!! While I'm jumping for joy I can't help but be sad too. Each time we have made progress, it hasn't been long until he has had a loss of skills too. 1 step forward, 2 steps back. I guess as long as he keeps gaining I should be grateful but it makes me leery of the forward progress each time. I'll just try to enjoy these new skills all the while praying he doesn't get sick and lose them again.
I've thought alot about why we are seeing such a surge in progress. We did double his CoQ10 on Dr. K's orders. Could this be the reason? Could mega doses of Q10 really be the miracle for certain types of mito? I don't know but it is interesting to see so much overall activity in Asa. Usually he is stronger in one area and the others stay the same or decrease. Not now though! He is amazing me in all areas!!
I mostly think that it is because Asa is surrounded and covered in prayer each day. I believe that God has His powerful, healing, comforting, peace giving hands on Asa. Asa's life, and ours too, are all on God's schedule and plan. Not on mine or the doctors or the therapist. We could try all the medical stuff thrown at us, do all the therapy he could handle or we could afford, see all the specialist and gurus but God is in control of this little boy, of this home, of this family! If tomorrow we are back on the pump, back to the low energy, back to the crabby and needing to be held all day, well, that too will be in God's control. I may not like it as much as I love this surge but I'll rejoice in that too!
Oh and I wanted to end on this funny... Last night I was holding Asa and Barry kissed me on the cheek. Asa teared up and started bawling! It was like his heart was broken. So sweet!!!
Wednesday, August 4, 2010
Sugar and spice and everything nice
I realize that rhyme is used for little girls but I'm stealing it for my sweet boy!!
I've posted before about Asa playing with dry oatmeal in OT. How he comes back to me smelling of sugar and cinnamon and brown sugar and maple syrup! Yummmmmmm! Am I making you hungry? Those are some of the best smells in the world to me.
We've changed up our therapy schedule again and Asa now has speech/feeding at 9:30am. So yesterday Mrs. Jill fixed him oatmeal! So he has been playing with dry oatmeal and now he was gonna eat cooked oatmeal. He has also been eating Gerber Lil Crunchies in cinnamon and maple syrup flavor. Do you see a theme here! We've tried oatmeal many, many times and it always produces gagging and refusal if not all out puking! We have not had much success at all. Until yesterday!!!!
Asa had over a dozen bites and was great! He was a slow eater!! But he was an eater! I'm so excited. And he even had more oatmeal at home this morning!! I didn't do as good as Mrs. Jill though. I gave him big bites and didn't really watch for him to clear his mouth. He gagged once but he worked it around and then was ready for some more! First a straw cup and now oatmeal!!! Oh, I hope he keeps this up!!
He even had 2 bites of rice crispies cereal but those mixed textures didn't go over too well. But he tried, twice!! He really like stirring the cereal!
I was so excited to post this last night but once everyone was in bed and it was my computer time, I was tired! My bed won!!
Now here is proof in pictures! I rarely get pictures in speech/feeding therapy. It can seem slow going in there and hard to capture. Today Asa was hamming it up though! I think he likes breakfast with Mrs. Jill. Next week he requests biscuits and gravy and scrambled eggs! :)
This was really a flirty face but I missed the grin so he looks upset doesn't he!
See, he was really happy about breakfast!
Asa loves the gloves so much that I considered feeding him at home with gloves! The cereal was a good distraction while he ate the oatmeal!
I've posted before about Asa playing with dry oatmeal in OT. How he comes back to me smelling of sugar and cinnamon and brown sugar and maple syrup! Yummmmmmm! Am I making you hungry? Those are some of the best smells in the world to me.
We've changed up our therapy schedule again and Asa now has speech/feeding at 9:30am. So yesterday Mrs. Jill fixed him oatmeal! So he has been playing with dry oatmeal and now he was gonna eat cooked oatmeal. He has also been eating Gerber Lil Crunchies in cinnamon and maple syrup flavor. Do you see a theme here! We've tried oatmeal many, many times and it always produces gagging and refusal if not all out puking! We have not had much success at all. Until yesterday!!!!
Asa had over a dozen bites and was great! He was a slow eater!! But he was an eater! I'm so excited. And he even had more oatmeal at home this morning!! I didn't do as good as Mrs. Jill though. I gave him big bites and didn't really watch for him to clear his mouth. He gagged once but he worked it around and then was ready for some more! First a straw cup and now oatmeal!!! Oh, I hope he keeps this up!!
He even had 2 bites of rice crispies cereal but those mixed textures didn't go over too well. But he tried, twice!! He really like stirring the cereal!
I was so excited to post this last night but once everyone was in bed and it was my computer time, I was tired! My bed won!!
Now here is proof in pictures! I rarely get pictures in speech/feeding therapy. It can seem slow going in there and hard to capture. Today Asa was hamming it up though! I think he likes breakfast with Mrs. Jill. Next week he requests biscuits and gravy and scrambled eggs! :)
This was really a flirty face but I missed the grin so he looks upset doesn't he!
See, he was really happy about breakfast!
Asa loves the gloves so much that I considered feeding him at home with gloves! The cereal was a good distraction while he ate the oatmeal!