Sick day

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

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

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

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

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

Holiday celebrations!

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

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

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

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

Eating!!

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

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

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

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

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

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

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

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

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

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

Our busy day

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

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

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

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

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

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

Asa has the right idea with the sanitizer!

GI appointment

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

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

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

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

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

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

True Milestones!!!

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

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

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

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

Same ole, same ole

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

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

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

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

Little artist

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

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

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

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

Downtime!

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

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

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

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

ECHO and sick

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

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

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

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

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

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

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

Wheeeeerrrre's Asa?

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

Time flies!

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

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

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

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

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