Tuesday, June 29, 2010

OT hooky

I cancelled Asa's OT for today. He was coughing so loudly that I didn't want other parents to worry for their kids!! I really think he is fine, he has had no fever for 5 days, he is happy again and nothing is coming from the cough or the sneezes. But to be sure and ward off dirty looks from other parents I kept Asa home.

And that makes it one week since Asa has been out of the house! He rode to school with me one day to drop off the kids so I guess that counts but he didn't see anyone. So for 7 days he has only seen those of us who live in this house! Poor guy!!

When I was getting my shoes on to go pick up Cade and Gracie this afternoon, Asa knew something was up! He whined and scooted towards the back door, and I wasn't even there yet! I asked if he wanted to "go" and made a sign. I think it was the right sign but I'm not certain, 2 hands together and one points and moves off. Is that it? Anyway, it worked for me so I went with it full force! And Asa signed back!!! Not exactly like mine but close enough, one arm raised towards the door. He got the idea!! I was so happy and we did it a million times at home. I kept trying in the van and he wouldn't do it. Anna said it was because he was already "going" he didn't need the sign! Later tonight my mom came over and Asa got all excited and squeally when he saw her. He even tried to scoot out of my lap so I stood him in the floor and he stepped towards her!!! I asked if Asa wanted to "go" with DeeDee and he put his hands together and threw one towards the door!!! In a very clumsy way but it was "go"! I use a handful of signs with him all the time but he rarely gives them back. Most everything turns into a clap! :)

And of equal or even greater importance in this household, Asa likes this season of Wipeout!!! The TV show is hilarious and you can't help but laugh. All the laughing has always upset Asa. I mean, even the slight laugh where you shake but no noise comes out gets him. And when I say "gets him" I mean "sends him into a pukey mess"! Not the reaction you'd want for such a funny show! We watched tonight and Asa laughed at all the falls on his own. He was really into the show!!! I think we have a weekly tradition! Maybe this means America's Funniest Videos can be shown again too!

I finally got the 48 hour VEEG finalized with Vandy. It'll be July 23rd. We're hoping we can hook him up, scare a few episodes out of him and be home by dark! Ok, that is wishful thinking but I do hope he startles easily and we don't have to be there long!

And I got my info from our visit with Dr. K. I don't know why I wait for these notes and then get ill when I read all the ugly labels. The good news is his bloodwork looked good other than the immunology stuff. Mine was normal as well. She also sent some stuff so I could have some ammo in the fight for Q10 coverage with the insurance! Not sure I'll win but at least I have a weapon now. I'm not sure when I'll start the war though!!

Monday, June 28, 2010

A better day

Asa is fever free and he was happy today! The down side is his nose is stuffy and he is sneezing and coughing. Nothing is coming out of his nose (not sure if that is good or bad) and his coughing isn't making him puke! So I consider all that a pretty good day!

Asa played in the floor a lot today. He scooted to Gracie's room and later watched some TV in Cade's room. He scooted from the kitchen to the living room several times today and even got the gait trainer around in the living room some. That requires a lot of leg strength since we have carpet! There are many days I just want to yank the carpet out and use the bare floor underneath!! It sure would make getting around easier for Asa! Barry may come in one evening to carpet laying outside!

And Asa has a new past time. The treadmill is our living room. Sad but true! Asa does some gait trainer work on it and occasionally Barry and I use it too! :) Cade and Gracie get on 10 times a day though. They only last 2 minutes but it is like they can't walk through the room without stepping on it. So Asa's new past time is to put toys on the belt while someone is walking on it! It cracks him up!! He thought of this all on his own. My nephew Jack was walking on it and Asa was sitting in the floor and just laid his toy on the track! Then it became a game. I'm not sure it is beneficial in any way and it is likely not a good idea but it is so fun to see him playing!!

Asa also went swimming today. It is has been too hot to even swim the last few weeks! Even in a pool, when the temp outside is in the high 90s, Asa will oveheat. Today was much more bearable and we filled his little pool with cool hose water and warm (hot?) pool water. He sat and played for 30 minutes. Cade went over towards him and Asa reached up for Cade to get him out. Cade brought him to the big pool and Asa had the best time!! He didn't get scared or startled one time...despite Cade and Gracie's best attempt, I think! He really didn't want to get out but he'd been out an hour and I didn't want to push my luck!! Even after all that swimming he wouldn't take a nap!

Oh I did use the pump 2 times today. Asa just looked thinner in the face to me and he wanted to skip breakfast. I tried to get him to try the cup and applesauce and yogurt and then I gave up and plugged in the pump. He need a good 4 bottle of Pedisure day. He really isn't even been getting 3 full bottles and very little orally so he needed this. I'm afraid to push the feedings too much cause we know when he is full, he is full and it'll all come back on ya!! Tomorrow will likely be an oral day but since we were at home I wanted to be sure he got all the good stuff he could handle!

I took him off the Reglan a few days ago. He was crabby and ill and then sick so I couldn't really tell what might have triggered the change. I dropped the Reglan and kept the Q10 and he is feeling better. I may add it back later when things aren't so iffy. It is hard to know if you see a true side effect or something from another cause but when I can control a side effect I'm gonna try to!

I cancelled OT tomorrow cause Asa is coughing so bad, especially when he is busy. Nothing is coming out and he doesn't have fever but he sounds so bad that I'd probably leave if I walked in to that sound!!! I really want to do PT and feeding this week since we missed last week so I'm hoping he drops this stuff by then!

Oh and craziest thing! I've been doing a lot of research (ok, googling) today....I know, shocking!! but I came across a blog of another Asa who is almost 3 and has mito! I'm not kidding!!! And I was googling a doctor's name and clinic not anything about a kid or blog! How crazy is that!! Wow!

Spoke too soon....

Asa is not all better. It seems this is an ever morphing think, each day it is different! The fever is still gone! That is important! With all the seizure talk freaking me out, the last thing I need is a fever causing seizures. This happens a lot with mito kids. I can deal with this grumpiness but I want the fever gone! He was actually happier today (I'm told) but when I got home from my day out his eyes were red and watery. He coughed a time or two and sneezed some. He just looked kinda droopy. He was smiling and even reached for Cade and let Cade carry him around a little while! So he isn't as ill tempered but still not up to par.

Last weekend there was a big mito symposium in Arizona. Last year it was in DC and Barry and I were gonna go but we got in to see Dr. K for the same week so we picked Dr. K. This year it was just too far away and it was right after we saw Dr. K so it would have been too much traveling. Next year it is in Chicago and I'm going!!! I'm saving my pennies now!!! All the experts are there and tons of parents. They organize it so you mingle and meet families from your area. While we couldn't go this year, a sweet mito mom from Memphis did get to go. Yesterday we had a lunch and she gave the other 3 of us the rundown on the meetings! We always have a great time when we get together and these meetings go longer and longer and longer!! We've learned though to start earlier in the day so it doesn't get too late on us!! I think next time we should start at sunrise!!

I won't bore you with all the details or conversations. And despite our best efforts, we didn't cure mito in our marathon lunch date. For me though, my spirits were lifted and my worries were eased for a while. I really don't know where I'd be today without the support of other mito families, both online and in real life! I asked Dr. K about a new supplement for Asa. She told me to try it and when I asked about the dosing she said "I have no idea, you'd get more info from other families than from me"! WOW! A doctor who admits they don't know it all and then recognized that we families have to stick together!! I know I've said it a million times on here but if it wasn't for other families sharing their lives I don't think we'd have a diagnosis and certainly not one so early in Asa's life! It can be tough to pour it all out in a blog or message board but I hope I can help another family!

So thank you to my real life mito moms and all those precious online friends!!!

Saturday, June 26, 2010

Asa is better!

Asa is feeling better! Well, he isn't running a fever at least! He is still pretty ill and crabby. But he was doing this before the fever so this may just be his new toddler personality!

He has been so weak that he can't even sit up in the floor without slouching and whining. He is happier in the highchair where he has support. He did scoot around some last night. He didn't eat very well but this morning he gobbled up his Pedisure. Yesterday he didn't even finish 2 bottles. He had some applesauce and pudding though.

And I was thinking our neuro here was been abrupt and quick with me about Asa's EEG but his last email was much nicer and he too said we could stop the EEG as soon as we had what we needed. So if we believe Asa is having startle seizures and we go in there, hook him up, trigger a few seizures or autonomic episodes, then we can go home!! How's that for a plan. I've been thinking of the best way to startle him and have decided that I'll have to bring Cade and Gracie with me cause they always seem to bring it out of him!

And lastly! Yesterday I got to mow the yard!! 2 blissful hours on a lawnmower, all alone, listening to my iPod! Barry said he doesn't like the way I mow though. He says I go in a circle over here and then a circle over there! Of course I do but otherwise I'd be done too soon!! Anyway, the first song on my iPod was "Miracle of the Moment" by Steven Curtis Chapman. I used this song in a slideshow I made for Asa's first birthday. It is a good reminder for all of us to just enjoy life. After this song was recorded Steven's little girl died when his older son backed over her as he backed out of the driveway. You'd think this would be enough to cripple a family but Steven has gone on to write some beautiful songs of worship, praise and faith. So even as we know Asa's life will be a struggle and will likely be shortened, we also know that none of us can know the future and we need to celebrate and worship each day that God gives us.

I can't get a video to upload (and I'm blaming dial up not operator error!) so if you'd like to hear the song click this Youtube link!


Wednesday, June 23, 2010

Asa is sick

Asa pukes every night! How is that for an opening line!! And I mean he pukes, not spit up! We kinda get used to it. The Reglan helped for a while but now it doesn't seem to be helping.

So tonight Asa took 2oz of Pedisure from his straw cup, sat the cup down and puked. Not so odd here, unfortunately. But when I cleaned him up he felt warm and limp. His eyes were red too. That is kinda odd. I took an underarm temp and it was normal. We almost always have to get a rectal temp to be accurate with him though. Since he'd been inside all day there was no reason for him to be so warm unless it was a fever.

So the night progressed to lots of dry heaves and noodle boy. He was oh so crabby too. He did doze on the couch for a while but I woke him up when I tubed in 2oz of Pedilyte. He kept that down for a hour so I tubed another 2oz. Hopefully he won't get sick with that. I'll probably try to tube 2oz more in before I go to bed. Unless he is sleeping on his tummy. Then I'll come up with plan B.

And if all of that wasn't enough.... I emailed Houston today and found out Asa's IgG level was low. I've heard talk of that but I'll have to read more cause if I read ahead in the book, I get confused! It is nothing urgent so next time we go to Houston we can add immunology to the list along with GI. You see how this works don't you! I don't play card games but it seems like we already have a gin rummy or full house or a straight or something at Vandy so now we are collecting specialist from another hospital, heck, even another state!!! ROOK!

And finally, Vandy called to schedule a 3 day EEG! 3DAYS!!! Dr. K said 23 hour EEG. I think our neuro is mad at me!!! First I tell him that 2 other specialist want to look further into something that is HIS specialty, then I push for the inpatient option instead of his suggested offer of an at home test, so he gives me what I ask for and then a spanking on top!! The scheduler did say that if they got the info they needed before the 3 days were up, we'd be discharged.

Now tell me if I'm wrong about wanting this EEG done inpatient. It takes us 3 hours, one way, to get to Vandy. So we drive up, get him hooked up and drive back. The test measures for 2 days and then we drive up, unhook him and drive back. It would be nice to test in his normal environment cause I bet I could take him right to some of his triggers but that is a lot of travel and what if I screw something up and it doesn't read. Shouldn't someone be standing over me to make sure I don't mess up! Asa had an EEG at 4 months but at this time he was bad shape and didn't even use his hands much less raise them to his head. Now one of Asa's favorite past times is scratching his head! Boy, this isn't gonna be fun. So what do you think is the lesser of the two evils.....test at home and drive or test at Vandy and be inpatient? Maybe I should just flip a coin!

Tuesday, June 22, 2010

Time for some pictures!

But before the pictures.... Asa was still crabby today. He woke up at 6:30 which is good because he ate breakfast earlier...at 10am! Ugh, I just wish he'd eat sooner and maybe he wouldn't be soooo grumpy! He did really good in OT even though he had a sub therapist. The sub even took him from me and took him back to the therapy gym and Asa was fine! YAY!! Gracie is spending the night with a neighbor and Cade and I dropped her off and then hung around to swim a little. Anna called not 20 minutes later saying Asa was screaming and sick. I got home and she had him all set up with a puke cup. She handled it very, very well! I'm so proud of her. I drained his belly and he was better but clingy! He didn't go to sleep this time and I was relieved cause I don't care for all this seizure talk! That was a speed typed update, now on to the pictures!!!

Since Asa has been so ill we are trying anything to distract and pacify him. Monday I got a ziplock bag and put in orange poster paint. Once it is sealed up and taped to the highchair tray, Asa is supposed to "write" with the bag. Well, didn't take him but a second to rip the bag from the tray and play with it in his own way. He was a little weirded out at first but soon he loved it!!

Then, today we shopped for Anna new glasses. Asa loves glasses too! He has several pairs of sunglasses and most of them are adult glasses cause his noggin is so big! Unfortunately I forgot to bring any of his glasses in and he thought he was in hog heaven in the store! His hands grabbed like I've never seen before. I'm just thankful Cade and Gracie were at summer school or I'd be sooo outnumbered!! We found these for Asa and thought them fitting since he was wearing his Superman shirt! Baby Clark!!!

Monday, June 21, 2010

I caved!

Asa has been so irritable lately and today was the last straw! I tubed him!!! I thought (think) that is poor behavior is due to the fact that he is hungry. And he has never been good at taking a hint that his body needs food, thus the tube! So today when he wouldn't eat and was soooo hard to get along with, I got out the extension and 60ml syringe I'd just packed away and I fed the baby! Unfortunately his behavior didn't improve so maybe I'm just grasping for a cause and effect here!

We have also upped his Q10 per Dr. K's directions and I wonder if this could be attributing to the problem. Ideally the extra Q10 would help his body but I don't know if that is working for him! I've posed the question to my favorite specialist, the other moms and will likely have some sage advice soon!!

In other news today, I emailed our neuro at Vandy (3 times actually) about the 23 hour EEG Dr. K recommended. I also called the insurance company 3 times. After all of that I still have no answers! Turns out we may be able to do the testing at home, well, a hotel cause to make 2 trips to Vandy back to back is NOT gonna happen! We live 3 hours (each way) away. Still the neuro kinda left it as my decision. REALLY, cause I'm qualified to make these medical decisions! I have also posed this issue to my trusted mom advisors! Where would I be with out ya'll!!!

On a serious note.... one of the mom's I met online lost her sweet baby girl to mito. This Mom has been a huge warrior and put together 2 great videos of mito kids to help raise awareness. Her blog struck me tonight and I want to share it with you. It is because of people like Jen that we will one day have a treatment or cure. I'm so hopeful it'll be soon!!!


Friday, June 18, 2010

Asa was still pretty clingy and needy today but I did see a ray of sunshine today!

While we were doing some cuddling, I asked Asa where his nose was. And he covered his nose with both his hands! Then when I asked where his ear was he stuck one finger in his ear! He had some trouble with his eyes but I think he knows where they are. When I asked about teeth, he chomped with his teeth! He already consistently shows us where his belly button is and his toes, he loves his toes! So I was very impressed with his self awareness skills. Not so thrilled when he got obsessed with sticking his fingers in my mouth to investigate MY teeth!

And I may be on to why he is so out of sorts. He has had his hands in his mouth so much more the last few days. Even though he is a little more oral, he still doesn't really gum his toys or hands...unless he is teething. Now trying to look into an oral defensive kids mouth is not an easy task so I've had no such luck at naming which tooth may be causing the trouble. In fact, he is behind on teething and when they do poke their heads out, the teeth still take a while to completely come in. So I'll keep on with my Motrin trick and hope it gives us both some relief!

On the eating front things went well again today. He had a yogurt and some mushed up Spaghettio's for lunch. I just fork mashed the Spaghettios so it was quite textured and he did fine. He also took a cracker to his mouth and licked it all on his own today! And I pinched him off some buttered toast and he opened for it. After several bites he picked the toast up and licked it on his own. I know licking seems weird but for him to just take food this far is huge!!! I'm so tickled!

I still haven't heard anything from Dr. K's office about the blood work we had done a week and half ago. I'm waiting for any results before I call our neuro to schedule the EEG. I did call our local hospital and another clinic to see if we could have the EEG done here but it was a no-go. They can both do the EEG but not the 23 hour video EEG. I tried to tell them we could bring our own video camera!! So looks like that will have to be done at Vandy! Boy I can't wait...insert sarcasm!! :)

Thursday, June 17, 2010

Lots of firsts!

So this week has been full of ups and downs. Thankfully, not in any dramatic way but still it is frustrating and depressing.

Today was sooo much better!!

I dropped Cade and Gracie off at summer school, which in case you think I'm a super mean moma is only 2 days a week and only 8 classes in all! They both make good grades but they don't like to do the work and summer break only makes that worse!! Anna thinks I'm the meanest ever since I make them go!! She always loved to read and didn't mind sitting for homework so I never sent her! And technically it is called Bridging Academy so they do work from this past school year and some from the next year! Now that that is out of the way here is what happened today! lol

We dropped them off and headed to Target. In my defense, there isn't much open at 9am! Once there I remembered that I'd forgotten ibuprofen for me (I had a headache) and some for Asa (he seemed to act better after a dose yesterday...I know I'm grasping at straws to find a reason for his grouchies!). We bought these things and dosed us both up and were about ready to head to PT when my phone rang. Asa's PT had to go home sick so we didn't need to be at the therapy center until 11:30. So we headed to the little deli at Target.

At this point it is close to 9:30am and Asa still won't take his Pedisure from the straw cup. Anna got an icie and I had a sugar cookie! Nice breakfast, right! I "helped" Asa take a bite of cookie and he was hooked! He had several pinches and that spurred him to drink the Pedisure! Well, half of it at least! I could live with him eating a few pinches of cookie and 1/2 cup of Pedisure for breakfast!!

Fast forward to 11am and since Asa wasn't so gung ho for breakfast I gave him a dose of Reglan trying to get him primed for feeding therapy! We get to therapy at 11:30 and he was ready for the second helping of his breakfast Pedisure! His therapist had a Gerber graduates meal ready for him to try! Like chunky vegs and chicken with green beans and everything. New tastes and textures! I was excited but Asa was watching that plate!!! First I "helped" him try a bite of a Gerber yogurt bite. He even let Mrs. Jill put one in later. By the end, he put two bites in on his own!!! So that is one huge NEW event!!

But back to the plate! Jill mushed it up good so it was blended and soft. To start things off she gave him a green bean on his tray! HA! Of course he didn't self feed that but he didn't gag when he touched it either! She even put a piece in his mouth. He made a face and rolled it around for a while...until part of it fell out and the other part came out when he sneezed! :) Then I "helped" him take 2 bites of the chicken and veg. blend. He didn't gag but he wasn't too impressed either! Not long ago he would have been gagging so badly!! On the third bite he did gag and gag but didn't get sick! Again, this is progress!! So 3 bites of the Gerber graduates!!! Such a huge thing for Asa!!!

Then tonight Asa was in his highchair while we got supper ready and he was playing with a package of cheese crackers with peanut butter. Barry opened it up and gave him one. He played for a while and then without any prompting, he put it in his mouth!!! He ended up sucking or licking off a few pieces!! He never crunched the cracker but he sure did enjoy licking all over it!! He actually played with 2 crackers and had at least 2 bites in his mouth, not to mention the little pieces that he got down. WOW!!

But wait, there's more! We had taco salad for supper and I had bought an avocado. I'm the only one who likes them so I don't usually buy them but I had one so I chopped some up on my salad. I let the kids try some, they hated it...unless you count the bite Cade tried and claimed to LOVE so the girls would eat it, then they all said it tasted like grass!? Anyway, there was a little left and since it is a high calorie, good fat source I used my little chopper to blend Asa some up! My plan was to save it for tomorrow but seeing how happy he was made me want to try it tonight so he could cry, fight, gag and puke before bed! Fun right!! He opened right up since he was still gumming on the cracker. I put the first bite in and waited for the gag and fuss! Instead I got a happy, open mouth ready for more!!! Seriously!! He liked it!! He ate all 2oz that I have blended!!! Who'd thunk it!

Soooo to recap... Asa self fed a new food (yogurt bites), had 3 bites of very textured food (Gerber graduate meal), initiated and self feed another new food (cheese cracker) and tried a new blended food (avocado)!!! Plus his 3 bottles of Pedisure for the day!! This from a kid who was sooo resistant and ill yesterday!!! I'm soooo excited!!! See all the exclamation points and lots of oooo's on this post!

Ahhh, I go to bed even more thankful than other nights. It just makes my heart happy to have one of these little progressions in skills, much less all of them! As I gave Asa a bath tonight I cleaned around the Mickey button (feeding tube) and was so thankful to have that little thing sticking out there! How much we relied on it in the last 18 months. How thankful I am that we haven't used it in 2 1/2 weeks. I don't think it is going anywhere soon, we haven't seen what happens when Asa is sick and his motility grids to a halt again, but I don't mind it hanging around and cleaning once in a while! You just never know where you'll find a blessing! In a feeding tube, in a yogurt bite, a cheese cracker or in an avocado!

Oh and speaking of random blessings...Anna and I stopped for lunch and ran into a person I've come to call friend who is such a great support and lifts me up so often by her kind words! We ended up sitting together and talking until we had to go get the kids from Bridging Academy...yep, she is proud member of the mean parent group!! :) Thanks for the chat at lunch Marsha!!! We should make it a regular thing!!

Wednesday, June 16, 2010

Roller coaster ride

Sometimes the lack of posts means all is well and we are busy. Sometimes it means all is not well and I am busy. Sometimes it means I'm in a grumpy mood and don't want to bring anyone else down into the pity party I create!

For the last few days the lack of posts has been because of the later 2 reasons!

Asa has been so clingy and needy that I'm not sure I could update if I wanted to. But I haven't wanted to sound as whiny and gripey as Asa, so I have avoided the blog too.

It seems we are out of the happy honeymoon of Reglan. I suppose it is still doing it's job but he isn't eating as well and he has had several sick episodes but without the puking so that is progress, I suppose. I was so loving getting Asa out of bed and him really wanting to eat! The last few days though, it has been lunch time when he decides to eat breakfast! And he isn't a happy hungry. I think hunger is part of the reason he is so ill! Have you seen the Snickers candy bar commercial with Aretha Franklin in the back of the car complaining about the AC and stuff. They hand her a Snickers and she reverts back into a college kid. The others comment how hunger always turns him into a diva. That is Asa when hungry...a diva!

Or maybe he doesn't feel well. The last 2 days I given in and gave him Motrin just in case something was hurting him. Cade is dealing with sinus headaches and I had one on Sat. So maybe there is some headache thing going on. Who knows.

It is hard seeing him regress or not progress like he was. For a while I can kid myself and start believing there is a misdiagnosis and he just has delays but is catching up. Then before the thought even gets out of my head, BAM, he is on a down slide again. And for no obvious reason. You'd expect him to be regressing if he was running a fever or had an ear infection or a cold. But so far no signs of anything.

So there you have it! The low down, ugly post!!

But I can't end there! Monday night was Gracie's last softball game. Gracie hit a home run in her last game! Barry stayed home with a crabby pants Asa and missed it. She has had a fun season, even though they only won a few games. Some games were close and some we wondered why we even showed up! But she had fun and learned a lot. I had a blast this season too! Gracie's team had some great team parents! After the last game a group went to eat and celebrate. Gracie and I joined them and it was the therapy I needed! I'll miss this team!

Oh and yesterday, Asa tried a smoothie! Asa got sick while Anna and I grocery shopped so we rushed through the end and left with time to spare before getting Cade and Gracie from summer school. Asa was zonked out in the car seat and we weren't getting him out in the heat again so went to Smoothie King and Anna used the Wi-Fi while I went in to get us a smoothie. I carried on quite a conversation about their Vitamix blenders!! Vitamix blenders are a tubers dream! They say you can blend a steak so smooth it'd go through a feeding tube! That is a cool blender!! Anyway, since we haven't used the tube but still can only do smoothie consistency, I was day dreaming about making Asa all these cool smoothies instead of Pedisure. Then I was struck at how weird it must be that I was getting all excited about making smoothies for my 2 1/2 year old. So I ordered something and left since even the smoothie was depressing! Asa was coming to but he had no desire for the smoothie. Later at home he did drink his and was very happy with it. You should have seen his face when something yummy came out of his straw cup! Seriously, wouldn't vanilla Pedisure get so old after this long!

Tomorrow we were gonna try some big kid food with Asa in therapy. I'm still hoping he wakes up tomorrow ready and willing to try new stuff. I might give him an extra dose of Reglan and see if that makes a difference. We are supposed to give it 3 times a day and only do it once. The GI warned that if the one dose worked we might have to move up to the 3 doses. We'll see how he does with breakfast!

So sorry this has been long and rambling and depressing. Pardon me while I get my thoughts out so I can move on!!

Sunday, June 13, 2010

A birthday and golfing

Today is Barry's birthday! Facebook already let the cat out of the bag that he is 43!!! From now until November, Barry is 10 years older than me!! We met and married when I was 18 and he was 28!! I can't blame my moma for the panic she must have felt! I'm sure there is a whole post (or 2 or 3) in our summer courtship! Maybe another day!

Anyway today is his birthday and I think it has been less than stellar! He deserves a locker room visit with the Titans, a big ole steak supper, a whole theater rented out just for him with whatever he chooses to see, a new lawn mower and one of those new V-6, 305 hp Mustangs they keep showing on TV. And I'm sure he has a ton more man dreams but that is all I can think of off the top of my head!

But he didn't get any of that. In fact, he is having a hot dog for supper, although it is an all beef hot dog! He made coffee and ironed church clothes, just like any other day. He endured my nagging and bossing all day. He rocked Asa to sleep and put him to bed, just like normal. This week, he spent 4 days driving me to a doctors appt 3 states away. It has hardly felt like a birthday at all!

Barry endures more than anyone really knows, I'm sure! He works a difficult, demanding job and then comes in to me just waiting for him to help with Asa some. Thankfully, Asa is much better and I'm not quite so ragged when he gets in! He still does Asa's bedtime 90% of the time though! He helped coach Cade's baseball team this year. The last 2 seasons, he helped coach Gracie's team. He even helped out with her team a time or two this year when they needed him. He rides 4 wheelers with Cade, will drop nearly everything to come fix a toy or DVD player or something, work on the pool, , or kill bugs! He will spend 10 minutes at bedtime to vacuum a couple of ladybugs out of Anna's room at night! I was sooo over that long ago, she can just make friends with them and go to bed!! I know many people see the mothering role as the selfless but I'm not a 1/10th as selfless as Barry Wilson!

He works hard to provide for our family! He does a job the right way, the first time and he doesn't stop until a project is done! As a procrastinator, I can't understand that work ethic! He keeps our yard mowed and looking nice, he changes the oil in my van at 3000 miles (whether it needs it or not!) and he will cook and do laundry if needed!

He is one great guy!!

And here is how he spent his birthday....

He played golf for the first time today! We had to drive by a golf course for some of Gracie's ball games. Gracie up and decides that she wants to play golf, she thinks she'd be good at it...I don't think we'll have to worry about her self esteem at all! So my uncle and cousin play golf and they let Barry and Gracie tag along today! Barry was really pretty decent and Gracie, well, Gracie thought she was good! She did do OK but she was soooo funny. She looked at the score card one time and said "I wonder who is winning" completely oblivious to the fact that she hit 3 times as much as anyone else! I may have created 2 golf monsters!!!

I know it wasn't the dream birthday that many men dream about but I'm betting Barry won't complain...much!

Saturday, June 12, 2010

Back to life!

You guys are so sweet and supportive after the Houston post! I got so many comments and emails! Thank you all so much!!

Things have been mostly even steven here! That is great news!! Boring and level are our goals these days!

Asa is still pump free! 2 weeks now and we haven't used the tube. He is having 3 bottle of Pedisure a day by straw sippy cup and usually an applesauce or yogurt with an apple juice a day. Today was iffy though!

He had his sippy cup this morning and even most of a yogurt an hour or so later. We then ran some errands. On the way home Asa started getting sick (autonomic, seizure, whatever!) and we hooked up a drain bag. Nothing much drained but he got better and went to sleep. That was at noon. We got home around 1 and he wouldn't eat. Then at 2 he wouldn't eat. Then at 4 he wouldn't eat. I was getting concerned because he hadn't had anything since 9am! Finally at 4:30 he picked up his cup on his own and started drinking! Go figure. Then at 6:30 he was fussy and I offered another cup, which he drank up. At supper he had several bites of mashed potatoes and an apple juice! Now we all know how much I love to feed him until he pukes but I hope I stopped before he got too full! He did self feed a few cheerios after supper too! I always offer him some of what we have and he usually refuses but tonight he happily opened his sweet mouth for the potatoes!!

Hamburgers here we come!! All of you were so supportive of him grabbing a burger that when day comes we are having a burger eating party and all of you are invited!!! I can't wait, can you?!

Oh and I got a new t-shirt on Thursday and that is all I have to say about that!!! :-)

Thursday, June 10, 2010

Houston in pictures

Houston trip 2010

This is how Asa had many meals on the road! He preferred to drink his cup in the carseat rather than in a restaurant or hotel room. I'm just thankful he learned to drink from a straw!! No feeding tube on this trip!!

He also enjoyed a fair share of Dum Dum suckers in the carseat! For some reason he kept putting it on his foot and then tasting his foot! It made for some great entertainment!!

Sunday morning outside New Orleans, eating the free breakfast! Asa sucked down his Pedisure from his straw cup (YAY!) and spent the rest of breakfast putting his spoon in the flower center piece! BTW, I love making hotel waffles!

Aquarium in New Orleans
This is when we first got inside. Asa loved the walk through aquarium but it was hard to get a good picture. He could roll right up to this one and really loved it so he put his feet up! Notice the sweaty head...it was HOT!

This is upstairs at the aquarium in front of a school of fish! Asa had gotten sick at this point and the chair was reclined and he was out of it.

Baton Rouge, LA
I was secretly distracting Cade by telling him to pose by various tropical plants. lol

Snuggles in the mornings! Asa and I slept together and Cade and Barry slept together. Turns out Cade talks in his sleep and Asa is a wiggle worm!

After Houston

The mito clinic hands out these "Mito Mike" turtles. His shirt says "slow and steady wins the race". Asa has never liked stuffed animals but he actually took to this one for a while. He even gave him love and put him on his head! I was very impressed!!

This is back in Louisiana at a rest stop. We fed some ducks at this stop!

And this is my best travel advice! If you have a lot of chargers, pack them all on a power strip and charge them in the same place. Then when you are packing up you won't forget one! Cade brought tons of electronics and only played with the DS!

Houston-the medical post!

We left out on Saturday to show Cade some of the sights on the way down to Houston instead of driving like crazy people. We stopped in New Orleans and went to the indoor aquarium there. We drove around downtown and saw some sights. It was 95 degrees so there was no way we could actually get out and explore. It was still fun and Cade had a good time. Next, we spent the night in Baton Rouge. Cade got to enjoy a full evening of cartoons because I had a headache and I took a nap while they lazed around the room too! That is more like Cade's perfect trip...hotel and cartoons and all the junk food he could eat! On Monday we headed to Houston but we took the scenic route and went down to the Gulf coast and rode a ferry over to Galveston. Barry was scared to death of the ferry but he ended up loving it! He even got Asa out of the car and Asa loved it, noise, wind and all!

As we drove into Houston that evening I was reminded this wasn't just some fun roadtrip. We had a purpose for visiting Houston and it wasn't fun. I think that is why I distract myself with planning off road trips so that I don't have to think about the actual appointment. I got nervous seeing the city rise up in front of us! It didn't get any better once we got to the hotel either. We stayed right in the middle of the medical district and were surrounded by hospitals, clinics and medical schools! And everyone I saw staying at the hotel was sick in some way. Many had masks over their mouths to keep the germs out. Many were bald from chemo. There were tons of wheelchairs, feeding tubes, chemo pumps, etc. I felt so sad that there are so many sick people but at the same time it made us seem normal to be there. It was odd and I'm probably not explaining it well so I'll move on!

A huge plus on this trip was getting to meet in real life a family that I've known online for years. We meet when Asa was just a few months old and all we knew was hypotonia (low muscle tone). I found a great support board and meet many great momas! It is surprising how many of us are now on the mito support boards though! Anyway, once we found out we'd both be in Houston for appts we began trying work out a meeting. Turns out that is harder than you'd think with so many appts and schedules and travel. We did get to chat a little in the appt but I've got a feeling we could have spent hours talking and sharing if our schedules would have allowed!! As we were leaving the appt. I recognized another family from the message boards. I haven't known them as long or as well but their little boy was unmistakable! Just another amazing family I got to meet in person! Barry and Cade were very patient with me as I chatted! They tell me I can go on and on but I must have done OK cause we still made it back to the hotel before check out!

So now the nitty gritty! We met with 2 med student first. At least I think they were med students. I need someone to explain the hierarchy to me, please. Anyway, we discussed with them the past year. We talked about the normal hearing test, normal vision tests, normal MRI/MRS, normal GI scopes, lots of good normals! Then Dr. K came in. She was glad he was sitting and bearing weight and taking steps with support. This time last year he was just learning to sit!!

So Dr. K came in ready to discuss some genetics. I confess I was obsessed with were this came from and how it happened for a while. Mostly because I was doubting the diagnosis. Since last year I have stopped worrying about the genetics cause there is nothing I can do about it now! But I was interested in what Dr. K had to say!! Asa has a genetic mutation that is likely disease causing but we can't say for sure because no one else has published this mutation. Asa only has damage to some of his cells, not all. I, however, had all mutated cells in my blood but no symptoms. Or so we thought! Dr. K said my lactic acid was elevated when I had bloodwork done there last year. Now this test is very sensitive and had to be drawn and handled properly. So I said "couldn't that be lab error" to which Dr. K immediately responded "well, we can redraw today and find out"! I walked right into that one didn't I!! So if I am a non-symptomatic carrier then it is likely Anna and Gracie are too. They'd need to see a geneticist before starting a family. Cade and Asa could be carriers (symptomatic or not) and not pass it on! There is still a chance any of us could have damage but it not be enough to show. That is the ticking time bomb to me. Every cough, headache, fever, fall, etc. will now be etched in my memory looking for a pattern or problem! I may be come the worlds biggest hypochondriac! Even though I've known this info for a while it was not fun hearing it from a specialist. But we do what we have to do and move on!!

When I explained Asa's episodes that our Vandy neuro called "autonomic dysfunction" and the GI called "possible seizures" she thinks they sound like seizures as well. I told her that Asa will get startled by something (wind, noises, elevators, new places) and will get sweaty, clammy, clingy, puke, and sleep. She said you can get set seizures off by startle and even got her student to slam the door, twice, to get try to scare Asa. It did scare him but he didn't get sick! I told her the wind on the ferry didn't set him off, nor did the dozen elevators we rode on this trip. It is unpredictable. So she ordered a 24 hour EEG to be done at Vandy sooner rather than later. I've been so scared of the seizure word and now it is out there and I'm OK. Partly because I'm not convinced it is seizures and partly cause you learn to roll with the punches!

On the plus side! She doubled his CoenzymeQ10 to 300mg per day. There are several mito clinics in the US and they seem to be playing guinea pig with us. Some give super mega doses of supplements, some choose only a few to give. One give really high doses of Q10 and there are clinical trials going on to see if Q10 can get FDA approval. So to have her double Asa's gives me hope that they are on to something and this may really help. We've been convinced it has helped Asa so I hope the 300mg will REALLY help!

We talked about getting the supplements covered and they are gonna send me a letter of medical necessity so we'll see how far that gets me. We talked about school and she is gonna send a letter for that as well. I'm not sure what that will be, I just told he was starting in Oct. and was there anything I need to be certain was brought up. She said she'd send a letter so we'll see about that too.

One of my questions for her from several months ago was about feeding. Since we were seeing no progress and it takes so much energy to eat and digest I wondered if it wasn't OK to just go with the pump and not worry about food. She said "NO"! Now,of course, he is doing so much better but I wanted to ask the question anyway. She said when he is 15 and wants to go grab a burger with friends, he'll be glad I made him work hard and learn to eat! So many positive statements in that answer!! I love her!!

As we were leaving a fellow stopped in and they want Asa to be part of a study. They finally got a research grant to look at slow digestion in mito kids. This is what we finally got our new GI to look at and the Reglan seems to have helped! Turns out it is very common in mito kids to have delayed gastric emptying. When Asa turns 3 they can do the scans in Houston and give us the info we need to treat him plus use the info to learn and help other kids! I see this as a win-win.

Oh, and of course we couldn't get out of there without having bloodwork done! 2 vials from me and 4 or 5 from Asa. Asa sat in my lap while she did me and then I held him so he could get poked. As she was getting ready for mine, Asa was happily playing with the tourniquet. When she tied it on my arm, he grabbed the danglingly end and pulled it off of me! Thankfully she hadn't poked me yet! She had to get him his own to distract him so she could work! Who knew a blue rubber strap would be so entertaining!!

So that was our trip in a nutshell! As I said before a wonderful friend got the hotel rooms donated and we are so thankful for that. They were great rooms and in Houston we stayed on the 8th floor for Cade! He was in heaven!! In Baton Rouge we stayed on the 5th floor and you had to use the key card in the elevator to get up that high, like it was sooo special. It looked just like the 3rd floor we stayed in but with a flat screen tv and a fridge. Cade thought it was grand though. He was so funny! The elevator had a glass wall and Asa liked that. Maybe that is why he didn't cry on the other elevators. Maybe we have cured him!!

I've got another post with just pictures too so look for that too!

Sunday, June 6, 2010

2 for the price of 1

I had a headache last night and only made a short post. It seemed so sad and short so I just saved it for today. Now you 2 in 1!!

Baton Rouge

We are spending the night in Baton Rouge tonight. We left New Orleans this morning and went to the aquarium. Asa really liked the tunnel aquarium but shortly after that he got sick for some reason. I'm not really sure what happened but he spent the rest of the time reclined in the chair and wanting to be rubbed! He didn't throw up but he wasn't feeling good at all. Cade liked the aquarium but he most excited to spend his money in the gift shop! I'm so proud that since he didn't find anything he really liked, he didn't buy anything. At one point he did start grabbing up ALL the post cards just so he could spend his money. Thankfully he put them back. I was proud when he thought of getting a few cause they are really good pictures but he was grabbing up anything!!

We have spent the rest of the day travelling to Baton Rouge. We found our hotel and grabbed a burger before we checked in. It looks like we are calling it a day with cartoons, again!!


We woke up this morning and had a scrumptious breakfast of poptarts and hotel room coffee! I have a rule about only buying one meal a day. The rest of the time we snack or have the continental breakfast. This hotel had a $9 buffet that I'm sure is great but I can't mess with my food budget! So after our poptarts we headed out for Houston!

There was 2 ways I was going about this. One was straight to Houston, we'd make great time. Or we could go down to the beach and Galveston and look around, longer route but we'd see some sights. Since my driver was up for the sights we headed for the beach! What he didn't fully know was that we'd have to take a ferry across to Galveston! Last year we headed to the aquarium with Anna and the GPS took is a route that involved a ferry! Barry freaked out and by the ti
e we got to the aquarium it was closed! So the ferry isn't his favorite thing but he sucked it up and we had a great ride! Barry even got Asa out and stood by the rail! I'm stll amazed Asa didn't get sick from the wind or noise and that Barry got near the edge!! I have video on Barry's cell phone though! Asa loved the ferry! He loved the seagulls! He was so happy! I can't figure this kid out!! Of course now I'm thinking a cruise for next vacation would be fun!!

Galveston looked like a lot of fun and we went in a gift shop so Cade could spend his money! Then we headed to Houston! Our room here is great! It has a full kitchen, with supplies! There is a separate living area and a bedroom with 2 double beds. I'm not sure how we'll sleep but I think someone else can have Asa for the night! There is a reason I never slept with my babies! I wake up too easily! For a guy who doesn't move much Asa sure gets around in his sleep!


Saturday, June 5, 2010

A day early

I'm blogging from a nice cool, comfy hotel near New Orleans! Next to me is a sweet, sleeping baby. Cade is enjoying cartoons on the hotel satellite! Barry is resting from the long drive. And I'm so thankful to be here!

Cade's baseball season ended last night and we decided to leave for Houston a day early. We could do this because a great friend offered her hubby's travel points to pay for hotel in Houston! And they didn't stop there but also sent out an email to his coworkers and got our other rooms covered as well!!! You really can't ever tell where God's blessings are gonna come from!!!

Since Moma was keeping the girls we decided to take off a day early and spend tomorrow showing Cade some sights. He is perfectly happy in a hotel with cartoons though!

Asa made the trip great. He really surprises us and keeps us on our ties with travel. On trips we don't allow extra time, he needs it. On trips we give him plenty of stops, he doesn't need them. In fact, the ONE time we got him out today he freaked out so he got back in van!! Guess it has become his comfort zone too!

And if Asa's SLP was around today, I probably would have given her a hug!! I just poured a bottle of Pedisure into a Take n Toss cup with a straw and handed it back to Asa and he drank it!!!! Yep, it was the easiest thing ever!! You should see my packing though. I'm not sure he'll make the whole trip without the tube so I brought tube supplies as well as cups, Pedisure, applesauce, yogurt and extras! When you add in our snack box and cooler, we should be all set for meals!

So good night from New Orleans.

Wednesday, June 2, 2010

Pool day

We had so much fun by the pool today. It took a while to get Asa set up but thankfully he stayed happy for more than 30 seconds! I emptied and cleaned his little pool. Then we put more water from the big pool in it. I got the Sportsbrella set up to keep him shaded. Then I had to get Asa ready! I even put swim trunks on him!! He usually skinny dips since he has his own pool. Lately though he gets so distacted by his built-in toy and won't play with the pool toys! Once Asa was all settled, I got in our pool to catch a few rays! Man, it has been a long time since I just soaked in the sun! After 30 minutes I got us all popsicles, I was done!

Asa really liked his pool time and stayed pretty cool. He even ate a Popsicle in the pool! He was a little fussy after the Popsicle so I was gonna bring him inside. I stood him on the deck and took his trunks off. As I stood to help him walk inside he headed for the big pool! The last time we tried the big pool, he wasn't a fan! But today he loved it! He ended up staying in the big pool, in a floaty, for another 15 minutes! Unfortunately after all the activity he was a tired mess for the rest of the afternoon! I think it shook me out of the land of denial seeing how worn out he got!

On the feeding front things went well. At lunch he had a few Gerber Lil' Crunchies. They are similar to cheese puffs only smaller and they dissolve pretty easily! Oh and Asa only like the sweet ones, Maple and Cinnamon. We started off with him "kissing" them, which he does open mouthed! That was funny enough in itself but then he crunched one! The first time it crunched, it scared him! Then he thought it was funny! He'd bite them just to hear them crunch!!! I don't think he really wanted to eat them but he liked making the noise! The more I laughed the more he crunched! It was so funny! He also had a 6 oz jar of bananna and strawberry baby food! He ate some at lunch but most of it was after his swim!

I hope I didn't wear him out too much today! I was ready to show off his happy eating at therapy tomorrow!

Tuesday, June 1, 2010

Asa does OT....alone!

Last week Asa's OT mentioned that maybe it'd be a good idea for Asa to come back to therapy alone. He has a student now so there are plenty of hands to care for Asa. And Asa has been very clingy lately! So today, Mr. Jim met me in the waiting room and took Asa from me and went to the therapy room. I kept listening for crying of screaming but never heard any! I wondered if they had sound proof walls and doors! Turns out Asa did really well! Huh, he didn't mind being away from me for 45 minutes! Who'd thunk it!! So this will be our plan from now on. I've wondered if I haven't been a pest by coming into all the therapy rooms and being an active participant in therapy. They all tell me it is fine (and even wanted) but clearly Asa did better in OT without his moma's lap to cuddle into! Such a big boy!!

It is a good thing we were already prepared for an alone therapy. I didn't have a babysitter and took Gracie and Cade both with me! It isn't unusual for me to take one buddy to therapy but I'd never take both. My babysitter is away at youth camp this week! I can't believe Anna is big enough to go to youth camp. It is a great camp, here in town. They are staying at a local church and doing service projects during the day and having services at night! This is so far outside Anna's comfort zone that I was afraid she'd chicken out. But she didn't and she went ahead. I just pray she is enjoying herself and learning a lot. I'm glad this camp is more centered towards helping others rather than a big party!

I also have some big news that I was keeping quiet for the moment. Asa hasn't used the tube since Friday!!! I know.....crazy good! I'm almost afraid to mention it for fear he'll quickly regress! He had been on the Reglan for a week and I just decided to see what would happen if I gave him a sippy cup of Pedisure on Saturday morning! He took it and hasn't looked back!! So far we are only up to applesauce, yogurt, Pedisure and apple juice. And we've had to use some tricks, like this morning he had yogurt and Pedisure (from a straw cup) while he was in the tub! He impressed me by having applesauce in McD's at lunch! His environment usually has to be controlled but he handled that like a pro! Now I am by no means taking the tube out but this is one small step forward! Now only to worry about textures and self feedings!

He also handled the ball park tonight! Again my babysitter is at camp! I bought a Frogg Togg and put it behind him in the chair. It kept him cooler and happy. Just when I was beginning to give up on evening feeding and was ready to use the tube, he took a juice box and a sippy of Pedisure. So far I'm loving the Reglan and we are only doing a small dose at night. I do think it makes him sleepy so we are only doing the night time dose for now. If he needs a daytime dose I'm not sure well keep it up. His tummy is sooo much happier though. He hasn't puked since we started the Reglan! He was puking every. single. night!

So a short recap. I'm lonely without Anna! Asa does better in OT without me. The Reglan seems to be working, no puking and more eating. He has been tube free since Friday. And the Frogg Toggs are a cheap, easy way to keep cool!

Oh but the best tip I have for the day....
After therapy, I took Cade, Gracie and Asa to Best Buy to get a cover for my phone. I didn't find a cover but we spent 30 minutes playing the Wii and Xbox 360! Asa loved watching them play and even tried his hand out at the Wii! We also played with the iPad!! There was a piano app and Asa loved tapping it! But he knew right away which button made the screen change! How did he know to go for that when there was sooo much else to tap?! Guess he'll have to wait on the iPad if he is just gonna push the home button over and over! :)

So while some mother's take their kids to the library for story hour, we spent an hour playing at Best Buy! Add that to the "Good Parenting 101" handbook!! ;-)