Friday, October 28, 2011
After our appointment with GI last week we decided he needed a gastric empty scan. Even with all Asa's GI issues he's never been investigated as to why. We can assume and try meds but he still has issues, major issues! So weset up the appointment at Vandy and it was this morning at 8am. Since we were just at Vandy on Tuesday I really didn't want to go back. We tried and debated and tried some more to get the scan done here in Jackson. Even after talking to the nuclear medicine tech here it just seemed like the best place for the test was Vandy.
And then I questioned and over thought whether we should go up last night and sleep in a hotel or drive up 3:hours and battle rush hour traffic this morning. Finally at 5:00pm I placed a super low bid on Price line to see if we could even get a room we could afford. Surprisingly we won and it was a great hotel! I love it when God gives me reaffirmation that I'm on the right path!
This is in the hotel this morning before the appointment. He was so good!
We got there early and it was pretty empty. About as empty as when Mom a and I left there at 6pm on Tuesday! Asa liked checking out the stairs and the automatic door. He made a little friend too. I wish I'd had the camera when he reached up and poked her in the ear! Lol
For this test they laced some of Asa's Elecare formula with a contrast. Then he laid on his back, strapped to a mat, with a scanner 6" above his body. Oh and he did this for 2 hours!!! I was so afraid that sensory sensitive boy would freak out some part of the process but he didn't! Not one little bit! As one friend said....Asa was unnatuarally good and insensitive!
He had to have a syringe to play with too! This entertained him for 1/2 the test!
A big thumbs up because he was handling it all like a rock star.....as long as he had an ear!
This is all the clearance he had. The straps were from his ankles up to his chest.
Clapping when he was finished! I don't know if you can tell but there was a huge sweat ring on the pillow from his head!
And as happy as I was for him doing so well, I was even happier when we got invited to a Rascal Flatt concert on our way out! Yep, we listened to them perform for 30 mins and then got to met them and chat and take pics!They were very sincere and kind with all the kids!
And if you don't know who Rascal Flatt is here is a song they were singing as we went in! Tons of emotions and lots of teary eyes!
Oh and we won't know anything about the test until next week.
Wednesday, October 26, 2011
So Moma and I headed back to Vandy for a 3:30 appointment with a dietician and a 4:30 appt with the neuro/geneticist. The dietician was a last minute booking and they were late. This left little time for talking. They suggested adding more calories either with Duocal or another formula. I questioned (a tiny bit) how we could get off formula. I didn't get too far! Since we were running out of time I mostly just listened. It's kinda pointless to even be talking about all this now...before the gastric empty scan.
After that we headed up to neuro/genetics. I've asked all of Asa's docs to help figure out his panic/puke/crash episodes. I keep getting the same answer....anxiety and up the Zoloft. Dr. Tyler explained it best..... in a normal person we get startled and our body has a quick reaction. In Asa, his body and brain don't communicate quickly enough for him to calm his body down after a startle. So he gets startled and then his body goes through all this reactions before he can calm again. Once it starts there is no way to really stop the reaction so we use Zoloft to keep him from having the startle to be in with! Now, his episodes have gotten soooo much better but the are still there and he is set off nearly everyday! It is no fun for us so I'm sure its no fun for him! We see the ped tomorrow for a 4 year old check up and to get him to up the Zoloft. Hopefully that helps!
Friday Barry and I head back to Vandy for the scan. I really hope this gives us some answers! Truthfully I hope the test is really abnormal! Hows that for a prayer request! Let me explain.... Our thinking is that Asa's stomach doesn't release the food into the intestines fast enough. That keeps him from feeling hungry but also keeps him nauseated and gaggy. My fear is that when we wake him at 4am to be at Vandy at 8am, well, his tummy will be empty, will have woken up on the 3 hour drive and will perform perfectly for the scan. I'm told the scan leaves a lot of room for interpretation. So even going to these great lengths we still may have no answers. Sounds like a familiar song!
After the scan I'll try the suggestion of the dietician but I'm pretty done with pushing so much formula that he just pops. I'm not sure where the middle ground is but I'm looking for it!
I'm editing to add that Asa was a doll for this whole trip! He was very "coo-ey" on the ride up, making lots of new and different sounds. He was great in the waiting room an for the docs. He was pretty abusive to Moma though, climbing all over her and being busy! He rolled his wheelchair all down the hallways and the waiting room. It was great! We were about 20 mins from home when he got sick nd puked all over himself but at least we were almost home! Poor kiddo!
Saturday, October 22, 2011
On Saturday, we took the kids from church to Falcon Ridge Farms for some corn mazing, pumpkin picking, petting zoo petting and all around fall fun. Unfortunately only 4 of the kiddos ended up going and 2 were mine!
Look how smiley they are in the van! They soon got tired of me and my camera!
Still smiling as we entered!
This is the whole group....minus me taking the pic and Asa strapped to my back in the carrier, which I LOVE and wish I'd owned longer! The 3 girls charged ahead and beat the rest of us. I'm pretty sure they didn't read the clues but just forged ahead and made their own way out!
Corn box after the corn maze. Asa loved it!!! And it was really cool. The kids skin was cool to the touch when they got out. I'm thinking we need a corn box for Asa in the summer!
Each took a turn being buried in the corn. I'm not sure I see the facination but then again I didn't get in!
Gracie in the bouncy ball corral!
And since it was empty, we adults gave it a go too. My legs still hurt!!! It is harder than it looks! And I must be the most uncoordinated person in the world because I feel of backwards and forwards!!! Thankfully Anna missed those shots and only has me on the ground!
Asa liked this swing and would drag his toes in the dirt as he went by. Reminded me of the tire swing and huge tree we use to play on at my grandmother's house. Her dirt was the best!
Chilling with Cade in the hammock.
And just because we are big kids at heart.... A tea party with Asa's sippy cup and juice box!!
It was a great day!!! The kids had a blast, the weather was great, the company was a blessing and Asa had the best day in weeks! He didn't puke or get freaked out one single time! Even though we really pushed the limits!
And I'd like some tips from all you folks who are posting pics of family pumpkin outings where the little darlings are in matching clothes and are all posing and smiling. We did good to even be dressed and I'm not 100% sure Gracie brushed her hair at all that day....she is boycotting it seems! Not to mention that each time I said "smile" they ran for the hills, or corn box! I'm not complaining but I'm wondering if my parenting handbook was missing that chapter. How bout someone just cut and paste my little darlings head onto the bodies of your perfectly posed and dressed kiddos. Feel free to not use Gracie's real hair....I'm thinking she'll be in dreads by Christmas!
Thursday, October 20, 2011
To recap, the dev ped said Asa has probable autism secondary to the mito. I need to call and set up appts to figure out the next step. I got his clinical notes on the way to our GI appt.....not the best way to start the day! The cardio appt was great and we don't have to go back for 2 years! So on to GI yesterday.....
Asa has lost weight again and he weights 28lbs. This puts him right at the bottom line of the growth chart. He is 35". He'd make a perfect 2 year old! Asa's appetite has been on a decline and I started replacing all fluids with formula. This still wasn't enough. And it would be easy to just fill him to the gills with formula but even without a ton he is gaggy and drooly and pukey. Life is no fun...for him or us....in that state. We've always just upped the meds and never really checked out why this is happening. Soooo, next Friday we will be at Vandy at 8am for a Gastric Empty Scan. Asa will drink some formula laced with contrast. He'll then have xrays taken at certain intervals to see how the contrast leaves his tummy. We suspect it'll be slow. If it's too slow it'd explain why he is still so gaggy. Then we can try different meds or different feeds. If it's normal he'll probably have a scope later.
On Tuesday we head back to Vandy for the neuro/genetic appt. Then Friday we'll go back for the scan. After this we'll be done with the appts....except news ones based on the autism stuff. Anyone else tired?
Monday, October 17, 2011
Today was appointment #2 in our October Specialist Marathon. We travelled 3 hours each way to see Asa's cardiologist. Asa had an echo and EKG. He was soooo good for both tests. And the report is that Asa's heart is "perfect"! And we don't have to see him for 2 years! Yay!!
This is very, very good news! We know that Asa's muscles, GI system, brain and eyes are affected by mito. Thankfully all of these are mildly affected but it does add up. It's great to have a "perfect" report on his heart!
So we have the developmental ped and cardio under our belts. Wednesday is GI. Vandy called this morning and moved our November genetics appointment up to next Tuesday. I need to get him in with the optometrist and figure out all the new autism stuff so I can make appts for that too! I told you October is busy!!
At least when I'll be able to quickly recall the dates of our last appts when I have to give a history to a new doc! We are seeing everyone in October 2011!
Friday, October 14, 2011
Asa had an appointment with a developmental ped. This doc was new to us because Asa was seen in the neonatal follow up clinic and graduated out of it last year when he turned 3. This doctor is from Vandy but comes to Jackson monthly which is such a blessing! If anyone local gets a chance to support Ayer's Clinic I encourage you to do it. Its amazing to not have to drive all the way to Vandy for appointments.
Anyway, I had lots of questions about some of Asa's behaviors for this Dr. "Autistic like features" is a symptom of some mitochondrial disorders. Asa definately has several autistic like features. He fixates on certain things (water) and avoids others (soft Teddy bears). He is affectionate to us and will finally tolerate kids but doesn't seek them out or even play with them. All of his sensory issues could be considered autistic like....or they can stand on their own. He doesn't handle transitions well, even happy transitions like coming home from school. Soooo, my questions for Dr. Couch were mostly about seeking autistic therapies vs Asa just being spoiled rotten. Dr. Couch and I talked for a long time with him watching Asa play and interact. He did a little exam and got Asa to walk and play with him. Asa is a rock star when you do what HE wants but if you challenge him he looses it! So what does Dr. Couch do but go and force Asa to do some hard gross motor work, like standing while just leaning against the drs leg or walking while facing the doctor vs the Dr behind him. So Asa lost it and the Dr got to see a full on episode, fit or plain ole rottenness! Then he gave Asa back to me while we finished! Thanks doc!
His final thoughts were that regardless of whether we call it autism or an autistic like feature of the mitochondrial disorder, it is a problem and some therapies may help. He gave me a few names in Nashville to call and I've got the number of a place in Memphis. I feel a little overwhelmed about starting all of this. I feel autism is such a buzz word right now and I don't want to waste time or money on stuff that won't work. I've got very little patience too! I've spent so long wondering if I'm overreacting to this bad behavior or was I just afraid someone would say the word "autism" that I really didn't know how to feel after the appt. At Walmart after the appt the cashier was talking to Asa and asked if he was autistic. Now I realize the cashier isn't a doc but I felt relief and a sting when she said that. Turns out she has autism in her family.
I've basically not done anything but read and make phone calls (and placed on hold forever) since the appt. It'll probably be a few weeks before I tackle this issue and spots. The good thing is Asa is manageable so for the most part we are OK for a while.
Fast forward to today... Asa woke up a little earlier than usual and he was mad! He usually spends 10 minutes cooing and kicking the wall before I go get him up. Today he was screaming from the get go. As I opened the door I could tell something was wrong. I could SMELL something was wrong! Asa had gotten sick at some point during the night and pooped (on his own, yay) and was a mess! When I picked him up I could tell he was warm too. He did NOT appreciate a bath first thing in the morning and was very vocal about it! That's pretty much how he spent the next several hours! He is not a kid who gets sick and just lays around. He's the kid who gets sick and screams and clings and MUST have you.... NOW. Its exhausting I tell ya! I'm not sure what the issue is but I'd guess viral. Nobody here's been sick and he isn't giving me huge signs of pain, just fever and cranky.
Oh and now would be a good time to mention tat I've had a pain in my neck for several weeks. Yesterday I broke down and called a chiropractor. I've never been to one but I knew I couldn't take meds that make you loopy so I went to a chiropractor. He stayed and overall I'm not too bad, yay. I do have a problem relaxing and probably having dense muscles locked up some stuff. At least that what I understood. I got news for him though, next week is worse! A trip to Vandy for cardio and GI here, I don't see me loosening up much! Anyway, he adjusted me, did some department muscle stuff and used an electro shock something. I did feel better but by the end of the night I ached all over. I guess those muscles were tight! I had to cancel today's appt since Asa couldn't go to school. And Monday we'll be at Vandy so i have to cancel that appt too. At least I can straighten my neck and even turn my head and I even got some sleep last night!! That's progress!
After all that complaining I bet you just can't wait for next weeks update on the cardio and GI appointments! :-) And I'm not going back to spell check and edit so if you have any questions about this jibberish lay them on me!
Monday, October 10, 2011
We did a Burger Bash because on our second visit to Houston to see Dr Koenig, I asked about the feeding and the tube. I asked if we should just give up on eating and embrace the feeding tube. It take much less precious energy if Asa didn't have to worry about eating but just got his nutrition from his tube. Dr K told us not to give up because "when Asa is 16 and wants to grab a burger with friends, he'll thank you"! Wow, that gave us such hope and we trudged along! And now at 4 years old Asa can eat a burger.....he choose not to but he can!
Here's the party videos first. I had been playing "happy birthday" with Asa all week so he wouldn't freak out when we all started singing to him. I was also hopeful that he would blow out the candle since he can blow a pinwheel......with his nose! Turns out the candle REALLY freaked him out! That's why he pushes the cake away at the end of the song. He expected a lighted candle.
He did finally get into the cake! He ate and played and ate and smeared and ate some more! And yes, all that cake did make him sick! I'm not sure that he isn't still feeling the affects of the cake!
This cake was so cute in the order book. It was made with fondant and was bright and colorful. Oh well, I still like the idea.
Of course he didn't want anything to do with his burger party! He did have a great time with the corn on the cob! I should post all those pics. He just kept touching and humming and picking it up above his head. Next year we'll have a corn party!
Making a dent in the cake!
And then the coming down from the high! He was resting on the couch with me......
But feel asleep with Daddy! Man, birthday parties are hard work!
Wednesday, October 5, 2011
On Tuesday, as soon as we got to school, he had his very first school pic made. I was running late and the photographer was finishing up so I just ran out there with Asa. I sat him down on the spinning stool and the guy snapped a few. I'm sure they aren't great but its exciting that he got to do it! Asa had been self feeding applesauce that morning and gotten some in his hair. I tried using a baby wipe to clean him up but you can imagine how well that looked! I can't wait to get the proofs back!
Right after the pics, we went a few rooms down and they were doing vision and hearing screenings. I really just wanted to see how Asa would react and he did great! The best part is that his vision and hearing are both perfectly normal! Yay!!!
And then today! Today Asa was measured for his first pair of leg braces. He'll be getting SMOs, which come up just over the ankle. Asa's floppy muscles and loose joints don't support his weight well and his ankles roll inward. These braces will support his arch and ankles so this turning doesn't become a huge problem later on. After the fitting we had a pattern wheel of patterns to choose from. Asa really wasn't into sharing the pattern wheel so I just picked a sports theme with baseballs and basketballs. It'll take a month or more to get the braces approved and made.
Here are a few pic of the brace fitting. I wish I'd had my camera with me for the school pic and screening. I feel like I missed a milestone! Hahaha!!
Don't let this fool you, this was the only time he wasn't cooperative! Asa likes shoes so he thought he was picking out a new pair!
Asa had to have his own tape measure too!
And a closer inspection. Check out that face! He was unhooking the Velcro strap and is still a little unsure of the sound and feel of Velcro!
Monday, October 3, 2011
Asa will turn 4 on Friday! 4 years old! Its bittersweet really. At years old he is dependant on us as much as a 6 month old would be. I think each year will widen the developmental gap for him. Even as he gains skills the rest of the world surges ahead by keeps and bounds, not at the snail's pace that would allow him to catch up. On the other hand, he IS 4!!! We made it 4 years! Yay!!!!
I'm planning a Birthday Burger Bash! Several years ago, when we saw Dr. Koenig in Houston, I asked if we should just give up on oral feeds and get happy with tube feeds. We'd been trying for sooooo long to get him to eat with very little results. Dr. K told us to keep trying to feed him and that when he was "16 and wants to grab a burger with friends, he'll thank you"! And while he isn't 16 yet, he will eat some bites of a Burger! On Saturday he ate a whole hot dog! I peeled the outside off and pinched it into tiny bites and it took him an hour but he finished it. I didn't push him to finish but he'd fuss if I took his plate away. He didn't eat much else til Sunday morning late so it wasn't a perfect plan!
October is also full of appts for Asa. Next Monday we see a new developmental ped. The next 17th is a trip to Vandy for cardio. The 19th is GI. Try as I may, I couldn't get them all for 1 day. And our geneticist/neuro couldn't see him until November 22. I should also try to get him in to the eye doctor while we're at it!
Before I know it October will be gone and Christmas will be upon us! YIKES!