Thursday, December 30, 2010
As good as the good was the bad was about as bad! The walking at Target did him in and he started freaking out. I guess he was tired and then went into sensory overload. He insisted on being held and started the sweating and gagging stuff. We took a break and got an Icee and pretzel in the cafe. The kids sat down while I ordered. They sat right next to the drink machine....with ice!!!! Everytime someone got a drink Asa lost it. The Starbucks blender set him off. Poor guy was sooooo jumpy! He startled so bad once that he knocked my cookie off the table! He also screamed most of the way home and didn't stop once we got home. I finally laid down with him and he went right to sleep. I wish he had a way to tell us what he needs. The meltdowns and trantrums are no fun! He had a minor screaming fit at McDs too that got a few looks but at that point I just figured people could sit somewhere else, we were there first!
The sad part is that this day was a special shopping trip for the big kids. They all got giftcards for Christmas and had waited patiently to go shopping. I had put them off until today so the weather would be better for Asa. And the big guys were great. They took turns shopping and didn't argue (too much!). We even went to 4 different stores looking for clothes Anna wanted! All of the fussing with Asa made me short with them though. I tried to be patient and distract Asa but that only works so long. I guess all in all they had a good day and most everybody got what they wanted.....Anna still didn't get any clothes!
I shouldn't be complaining though! A few months ago I would have never tried a day of shopping with all 4 of them. And Asa would have had a feeding pump not eating burgers. And we a several little friends who are inpatient right now with concerning issues and no clear answers. At least my family was all together, even if it wasn't as easy I'd like. We are blessed!!
Sunday, December 26, 2010
The kids each got one present that they really, really wanted......and that is it! Well they did get one little toy, pjs and an ornament. They got some fun stuff and gift cards from the rest of our family but we didn't end up with so much stuff that they couldn't play with it all. My mom gets sick when we have so much food left over after a holiday, that's how I feel about gifts. Last year we tried to spend less but get lots of stuff. I thought the kids would be disappointed if they didn't have a ton of boxes under the tree. Let's just say I put most of that stuff in a garage sale by spring! Not this year! Our tree looked pretty bare and I didn't even take a picture of it like I usually do, just in case my plan backfired! I feel so blessed that we could get them all one surprise they dreamed about. I'm proud of myself for not picking up everything I saw on the shelves!! Gracie did dream of Zhu-Zhu pets and she got one from us and one from my mom. I figure even if she tires of it next week Asa or the cat will like them!
Anna got a laptop. It is hard to surprise a teenager but I think we may have pulled it off! Maybe!! Since we have dial up she doesn't have internet in her room and that makes me happy!
Cade got a bigger 4 wheeler. Gracie got his hand-me-down one with great excitement! They have been riding several times even though it is COLD!!!
Gracie got an iPod touch. She wanted a DSi even though she has a DS and never plays it. I thought she'd be able to grow into an iPod and we won't have to worry about losing games. She loves music and has played music as much as games! I was worried she'd see a tiny iPod and not realize the money, just the size but she hasn't complained one time!!!
Asa got a little power wheels car! I was originally thinking of a recliner but then I sat him in a power wheels at Toys R Us and he loved it!! He went right for the go button!!! It has a tall parent handle and we've used it to go round and round in the house!!! We thought this might be a mini trial for a power chair. Turns out Asa likes to run over stuff so a power chair may be far off!! He did love the freedom though!
See, they all got one big, amazing gift and are VERY happy!!! I love it! I just hope they realize this may not happen every year!!!
I'm ready to enjoy this next week! The kids are out of school, we have no appointments and nowhere to be! We will have to spend one day giving everyone a chance to spend those giftcards! Gracie is talking about getting new bedding for her bed! We reorganized the upstairs room today and tomorrow will be Asa's room! I think I have a plan for Asa's bed situation that doesn't involve buying anything new!
Asa and I are both feeling better! He slept all night the last 2 nights! And yes, I realize I just shot myself in the foot by saying that! I spent all day Christmas sneezing my head off and feeling like I'd been hit by a truck! Today my head was sooo stopped up but after alot of meds I finally feel "normal" again! I think Asa's meds made him a mellow fellow yesterday! He handled way more stimulation that I thought he'd be able to! I wish I knew what it was so I could ask for more!!! Then again maybe it wasn't the meds at all but my Christmas prayers being answered!!!
Friday, December 24, 2010
I, on the other hand, have been fighting midnight battles with Asa! He usually wins and I end up dozing with him in my arms in the recliner most of the night. I can get him back to sleep but if I lay him down he wakes up. I've resorted to trying to climb into the crib and camping out in his floor. I think he'll be in a big boy bed before long!!!
If you aren't my Facebook friend you have missed the fact that Asa is sick. He stated running a low grade fever on Wednesday. He puked and I thought it must be a virus. He woke up ready to go on Thursday though so I thought it must have been his slow motility. Last night he woke up at 1am and had a terrible cough. I took him to the walk in clinic today since it'd be Sunday afternoon before I could get seen again outside of the ER. Thankfully his lungs ate clear and it is just an upper respiratory infection. He got meds so hopefully we have nipped this in the bud!
I won't complain about a little bug. We have too many friends that are really struggling right now. Many will be celebrating Christmas in the hospital or trying desperately to stay out of the hospital! Our plans may not be going according to plans but we are together!
As we celebrate the birth of our Savior I'm thankful that God sent His only Son to this world as a sacrifice for my sins. He came as a baby, lived a perfect life, died a cruel death and rose again so that I can have a way to heaven and eternal life. That is the reason for the season! I do love seeing the joy in my kids eyes and the food and visiting with family but I celebrate becuse of the birth of my Savior!!!!
Tuesday, December 21, 2010
Don't get the wrong idea, he is still not your typical eater. He can self feed dry, bite size stuff. He can't use a fork or spoon. He can handle many textures and tastes. He has a good swallow. He has a very weak bite and can't even bite through a cracker. Still the lick, suck and mush technique has gotten him very far! So while we have a long way to go, we've also come a long way!!! Most of his oral issues are now sensory and fine motor issues that his OT will work on.
I'll miss Asa's speech/feeding therapist so much! She's had him since he was only a few months old and when he had the NG tube and we wanted to avoid the G tube. She has more of a mental health therapist for me than just a therapist for Asa! Wonder if she could back bill insurance for that!!!
When we saw Dr. Koenig in June, I was almost ready to give up on feeding Asa. It seemed like we were chasing our tails! We'd get him to eat some applesauce and then he'd stop eating all together. It was more than frustrating to go up and down so often. Now just 6 months later we are holding off on feeding therapy! God is truly good!!! In all of this we have remained patient (mostly) and had faith that God will do things in His own perfect time! It was just His time for Asa to eat. It may all fall apart tomorrow but tonight I sing His praises and give thanks for this milestone we get to savor!
Monday, December 13, 2010
I'm blogging mainly to tell you of a huge milestone! Asa has been sooooo good today! I know that may not typically be news worthy but here it is!!!! Asa doesn't self soothe, self play or even sit without entertainment very often! He is high maintenance. I accept most of this blame but you gotta do what you gotta do when he can't sit, reach, activate toys, etc on his own. By the time he got the skills he developed a huge dependency on someone sitting beside him and entertaining him.
Today though Asa lay in the floor near the Christmas tree and played for nearly an hour and I got to take a shower without him howling for me! And this afternoon he played upstairs with Cade and Gracie for a while! Tonight he has played Lego's with Cade for nearly an hour. I know a picture can't capture the bliss of the moment so instead of interrupting them I just watched and soaked it all in!
Asa dumped the whole bucket out while Cade was building. Then Asa would pick up a couple and go "mmmmmmm" and "uhuhuhuh", which are basically his only happy sounds! He banged a couple together and then would hold them up like he'd done something amazing. He'd lean in to give Cade a head hug. He watched Cade like a hawk! And Cade just played right on! They were adorable! Just so normal. Except a normal 3 year old would have probably been chewing all over the Legos. I resisted the urge to get all therapist and teachery on Asa and turn the play time into some type of work. I didn't cheer him on. I didn't take pics or get in his face. I just sat quietly across the room watching the moment! Sometimes that all you need!
I hope this a new way Asa will choose to play. One of his IEP goals is for him to learn to play alone and with other kids! Maybe this one is kicking in already!!!
Another plus of using the real computer......spell check! You're welcome!!
Sunday, December 12, 2010
Saturday night, Barry and I went to a Christmas party at church....without kids! How fun! I really did have a good time and Asa had a good night at his DeeDee's house! The other kids too but they always have a good time there. Asa is just beginning to like being on the go!
Today was worship day! We had breakfast at church this morning and family Sunday School. I really like it when we do this. I love our church family and feel so loved by them! It was a good day!
Asa is still eating so good. Yesterday he ate a whole sausage ball at breakfast and one at lunch! That is a big quantity for him! He had a whole chocolate chip mini muffin today! He has been so eager to eat! We've had a couple of mornings where he isn't ready for breakfast until much later. This keeps him pretty cranky until we find something he'll eat. I hope this isn't a downward slip!
Oh and his twice a day miralax seems to be working out!!!! I've changed 4 diapers tonight! And those wonderful diapers he gets from insurance are horrible at keeping anything in!!!! I won't complain though because I know too many families with much bigger kids who can't potty train and insurance considers diapers a "convenience item"! Really, a medically fragile 10 year old who is completely dependant is denied diapers because they are a just a convenience! Crazy!!! And really I'm just glad we are finally seeing poop, even if I have to wash tons of clothes!
Thursday, December 9, 2010
There was 2 schools we could choose from when we started his IEP. One class was very much like a typical preschool class. Busy kids, playing with toys, various levels of behavioral and developmental needs but I didn't see any as physically involved as Asa. Doesn't mean the weren't there, I just didn't see them at the time I toured. The second school had a "medically fragile" class. I almost pictured a miniture hospital with a term like that but it wasn't at all! There were gait trainers, therapy mats, touch screen computers, supportive seating, switch toys, etc in the room! It felt like a therapy center and it felt right for Asa!
We chose the second class and right now there is only one other student in the class with a teacher and an aide. In January another 3 year old will join them. That's probably why they know Asa so well, they have pleny of attention to give him!
He goes at least 3 days a week and sometimes on Friday too. He goes from 12-3, but I usually pick him up at 2 so I can get to Anna's school by 2:30. He has therapy 3 days a week and I'd like to send him on Friday but gas is getting so high that he isn't going tomorrow. And that brings me to my thoughts of loving his school today!
I wonder if I've made the right choices for Asa. Have I underestimated him and his skills? He is changing and growing and adapting so quickly that I always worry if I'm holding him back. There is a fine line between pushing Asa's limits and pushing him over the edge!! How much noise and excitement can he take? How much therapy can he handle at once? It is a fine line! As we talked about the gas and buses. His teachers reassured me that I was right and Asa's sensory and fatigue issues wouldn't allow him to ride the bus. He just wouldn't be able to handle it! He hates the sight of the bus. He trembles when he sees the bus stop at the end of our driveway. Then there is the fact that we live 30 minutes from the school, out in the boonies! If that's 30 minutes in my van just imagine how long it is on a bus picking up other kids! Did I mention that he tires out so easily that it isn't unusual for him to take a nap in the therapy swing? And he is only there 2 to 2 1/2 hours!
All this sensory talk led us to talk about the classes. His teachers also can't imagine how he'd handle a more typical classroom. He has done better than I could have imagined but I'm not sure he could handle the other room! They said when the computer or maintainance people come in he gets unhappy. Until this week when the nurse came in for the other little girl, he get bothered. They take him out in the halls and sometimes he can't handle the other kids walking down the hall in their little lines. Other times he does well. The good part is that his teachers get this! They are learning his cues! We'd all call this year a success if we just got to the point that he can handle school! Learning songs and colors will be icing on the cake!
But he is learning! He signs "more" and "please" often. He signs "school" and waves bye again! He seems excited to go to school. He doesn't necessarily get excited to get in the room but he gets excited to be "going"!!
I'm just so glad that he has this class and these teachers! I'm so thankful that someone else gets to play with him for a few hours a day!! We are still learning to adjust at home. The fatigue and transitions still aren't perfect but we are trying! A bath worked well for him yesterday but not so much me! We'll probably get a good plan about the time he is out for Christmas break!
Yep, I love Asa's school and teachers!
Monday, December 6, 2010
full Asa update now. I use the blog to go back and find his milestones
and appts and meds. So this will be as much for me as any one else!
We've been having a great few months and it really needs to be
Asa isn't on any of the mito supplements. None. We ran out of Q10 in
the late summer and I just didn't order more. We were buying school
supplies and the Q10 is pricey. I intended to buy it once Asa got a
SSI check. He doesn't get one every month so it ended up being awhile
before he got a check. By that time I'd not seen a decline in his
skills so I just didn't order more. It is hard to pay that much for
something and not see any changes! By October I'd stopped giving the
Carnitor. The stinky smell was AWFUL!!! I have theory that the Q10
helped keep that at bay and once the Q10 was dropped the smell broke
While I didn't notice a change in Asa's tone or endurance he did start
to balance terrible constipation!! Im not sure if that is supplement
related or a coincident. His diet had not changed at all, 4 cups of
Pedisure a day! For a kid who would go several times a day to start
going once every couple of days was awful! The poop was small and
hard, his bottom was bleeding, he was puking daily because nothing was
moving! Not fun!!! If the Carnitor smell is a bad side effect, the
increased poop would have been nice! Too bad we weren't getting that
We added a daily dose of Miralax, extra fluids, tried fiber. Still no
poop! While this would be uncomfortable for anyone, for Asa is also
meant his delayed gastric emptying was even slower, he puked even more
and his appetite was even worse! A huge step backwards!
The new GI plan was to use enemas and suppositories (which we'd
already done to start things moving) to get him going again. By now we
were a good 6 weeks into the constipation and he'd started trying to
"hold" the poop because he knew it would hurt. We don't want that bad
habit to start! Once we had him cleaned out, we started giving him 2
full doses of Miralax a day. He still isn't back to his consistant
poop schedule that I took for granted before, but he is not all backed
up. Occasionally I try to hold off on dose of the Miralax but he
starts having trouble again.
We also added Zantac to his reflux meds. He takes a Prevacid solutab
in the morning and Reglan at night. We can do Reglan 3 times a day but
the neurological side effects scare me! We added the Zantac as a quick
action med when he has his startle episodes. I think it may be
helping! He was very gaggy and drooly this afternoon. Once I gave him
the Zantac it stopped and he asked for food!
And that brings us to the eating update!!! In the last month he has
just bloomed with his eating! He is excited when we sit down to eat.
He wants our food. He grabs at our food, not just the plates and
forks! He is excepting nearly all textures and tastes! He's had
pinches of burgers, rice and gravy, spaghetti, pancakes, scrambled
eggs, sausage, brocolli, spaghetti squash! It is really amazing!!! He
is eating tiny amounts but he is refusing very little! I'm amazed!!!
We are usually only giving him 3 cups of Pedisure a day and the other
calories are from foods and the added juice. He also drinks water
willingly!!! I love it!!!
He has finally picked up on some signs! Finally!!! He signs "more"
mostly appropriately. Sometimes he throws it out because it is the one
he knows and he is frustrated so he goes to the sign he knows the
best. He signs "more, please" when we are feeding him. He signs "all
done" but I wished he used it more on his own instead of going
straight for the all done squeal! He puts his fingers to his lips for
"eat" when I ask if he is hungry. We are working on "no" and he has
done his own version at the cat when Toby gets too close! He is waving
"bye bye" again after we didn't see it for many many months. He puts
his palm to his mouth to blow kisses though he doesn't really throw
He is also making more sounds. He is a champion squealler, screamer
and crier but those are just vocalization and not real sounds. They
get our attention for sure but all squeals sound the same! It is a
guessing game as to what he is unhappy about! Is he bored or in pain?
Is he tired or dirty? It is like a newborn! He recently started some
"mmmmmm" and "nnnnnn". They really don't mean anything but at least he
His behavior is more like a typical 3 year old!!! He is easily bored,
easily frustrated and largely non-mobile so you can imagine how I
spend most of my days!!! Thank heavens for school! He is currently in
a no sleep mode! He does this occasionlly. Like he just forgets how to
sleep! Thank heavens for melatonin!! He also currenly has a face rash.
He does this sometimes for no reason. I wonder if he is teething. He
keeps his fingers in his mouth if he doesn't have a paci in. Yes, he
still has a paci! I'm not sure if it is a soother for me or him! I
could do a whole blog on the paci! He is also letting me brush his
teeth more and even chewing on a toothbrush! All this oral activity
makes me wonder if teeth aren't trying to pop through!
Asa is very cognitively aware of who we all are! He gives hugs and
squeezes our necks! He gets excited when we pull into my mom's
driveway or Target! He laughs at the cat, as long as he doesn't get
too close. He really has a funny personality when he isn't overly
tired or overly frustrated!!
I feel so thankful and blessed that we are seeing the small and huge
inchstones we are able to celebrate!! Honestly the last few months
have been amazing! I can only thank God and praise Him for all the
blessings He gives us! God is good.....all the time!!!
Saturday, December 4, 2010
With Asa there are alot of traditions that we just can't or won't do. We've tried the Santa photo his first 2 holidays but it didn't go well at all! But in all of the "can'ts" we seem to have stumbled onto a big "can"!
A couple of years ago I had a big plan to go look at Christmas lights. We drove through McDs to get yummy hot chocolate and set out. During this time Asa was still not in a good place. We hadn't figured out his GI issues. We didn't know his sensory issues were so deep. We didn't have good supplements. All that to say that instead of a happy, fun family night of Christmas lights, we ended up with hot chocolate that was too hot, Gracie went to sleep and poured her hot chocolate all over her and Asa screamed bloody murder from tummy pain the whole time! That's how I remember the night! So it was a shock to me when the next year the kids couldn't wait to get hot chocolate and look at Christmas lights! Seriously, they wanted to do THAT again! But we did and it was fine! It was fun! It was great!!! So our new tradition was born!
Asa loves lights! Last year we found a house near us who sets up a huge display and even has a radio station you tap into so the lights are synchronized with the music. They have Santa dressed up and encourage you to get out and wander around their wonderland. They accept donations for their church's youth mission trip. Talk about a win-win! Asa squealled and loved those lights last year. I can't wait to go back this year!
When Anna was little Shelby Farms did a huge drive thru display that we went to for 2 or 3 years. Then they cancelled it. It was brought back this year after a 10 year absence! I was excited to try our new tradition with an old experience! And it didn't disappoint! The lights were great! The music...not so much! I'm glad we had our CDs! Asa squealled and laughed! The big kids liked it too! They may have enjoyed driving thru McDs and a road trip just as much but whatever!! We had a great family night and saw some great lights!
It didn't go perfectly though! When does everything go perfectly
though! We had to stop by a Walmart because Cade had a few bucks to
his name and it was burning a hole in his pocket!! When Cade, Anna and
I got back to the van, Barry and Gracie were changing Asa's dirty
diaper! He got his pants and shirt both dirty!!! What are the chances
that his 2 a day dose of Miralax would kick in just as we start a road
trip! You really just have to laugh about it! And it was fine since
our whole trip was in the van! And the memories and laughs just keep
4 hours in the van,
$20 on supper at McDs
$6 on hot chocolates
$20 for Starry Night ticket
$20 in gas
Time of laughing, singing and memories with the family.....PRICELESS!