Today was the UMDF Middle Tennessee Chapter meeting at Vandy. Or as I call it, my mito friends party! I just love this group of families!! And I took my camera but didn't take a single picture! Not even one!! I was too busy talking I guess! It is only from other families that I learned about the different strollers and wheelchair options. And other parents told me about the feeding pump that I love vs. the bigger, bulkier one home health original sent out (and that I used for a year!). Other families have given me advice on feeding and formula, diapers and tubing, equipment and car seats. The doctors don't give that kind of advice, or at least they aren't very good at it!
I found this mito group just days after our diagnosis and they had a meeting just a few weeks later! I've been hooked since then.
When you have a sick child who is undiagnosed or when the questions are many but the answers are few, it is a scary time! Finding other families is like finding a treasure map. Even if the symptoms or diagnosis don't match up perfectly we all understand the frustration of searching for answers. The advice on what test to ask for and what doctors to see has been invaluable to me in my fight for Asa. I really believe if I had not found some of the great parents in my search, we'd still be without answers and a very sick little boy. Too many doctors want to take the "wait and see" approach. I guess the desperate search for answers might keep you coming back loyally to see them. I hate to think that but clinics are businesses too. That is just a fact. Maybe that is just our specialist but I've talked to several who completely discount a mother's (or father's) intuition and I've got to wonder why sometimes. It takes a strong doctor to hear a parents idea and then actually act on it. Whew, I didn't mean to be doctor bashing but while I'm at it....
When Asa had his EEG we saw the neuro who had the clinic that week. We've never seen him before. He came in and we chatted. For those of you outside the medical world, it is a pain a the rear to meet new doctors!! You have to go through the history and story over and over again. You do it for the nurse, the student, the intern and then again for the MD. Sometimes I wonder if they just keep asking the same questions to try and trip you up. But anyway, this neurologist lumped Asa's mitochondrial dysfunction as a symptom along with his hypotonia, reflux, developmental delay, etc. I told him I understood Asa's situation as a defective gene in the mitochondria that caused the hypotonia, reflux, DD, etc. He kinda just blew me off and I didn't argue cause I just wanted to get the EEG over with! That and the 6 or 7 other people in the room and his white coat kinda were intimidating. Still his words stuck with me.
That is why I'm thankful to have Dr. Koenig in our corner!! I sent her an email on Monday telling her of my confusion and asking for clarification of Asa's diagnosis. Turns out I was right, Dr. XXX was wrong! There is so much misinformation with mito and not only from us regular folks but from specialist you pay out the wazoo to see! I understand John Doe down the street giving me funny looks when I tell them about mito but it is frustrating when it comes from a specialist you wait months to see and then you get a blank look or, worse, misinformation!!
So back to the UMDF! They try so hard to get right info out there. The right info, like 1 in 4000 are born each year who will develop mito. Like mito doesn't always come with a mutation that has an acronym like MELAS or MERRF. Like mito can present in so many ways and no 2 cases are alike. Like mito doesn't always mean cognitive delays. Like you can *look* completely normal and still have mito. I could go on but I won't.
Thank goodness we have the UMDF trying to raise awareness and provide doctors with the right info. I'm thankful to have the UMDF bringing together all these families so we can learn from each other. I'm thankful the UMDF provides me with support, info and materials so I can raise awareness too. And on that note, stay tuned for some upcoming plans and ideas!! :)
Oh and I have to mention that Asa had 2 whole fish sticks at supper tonight!! I used his spoon to scoop out the fish (or fish-like stuff!) inside the crunchy. He had 2 whole fish sticks and 2 green peas, after I peeled them. Yes, I peeled little, green English peas! I was impressed he tried those! And I was giving him water to drink to clear his mouth so he wouldn't choke. A few minutes later I noticed him chewing again and got scared that he still had fish stick in his mouth. Turns out it was a Smarties he'd found that was left over from a game we'd been playing earlier! I've been down this road before and know not to start planing on eggs and bacon in the morning but I'll celebrate while I can!!! YAY!!
Saturday, July 31, 2010
Friday, July 30, 2010
School, school and more school!
We had open house at Cade and Gracie's school last night. I'm so excited for both of them this year! Both classes seem great and I know both teachers. The whole school had a fun, busy, exciting vibe last night. It felt great to be sending them back!! They start again on Monday!!
And then today Asa had a graduation ceremony for Early Intervention. EI is the birth to three program here. Each state has a birth to three program and if you know of a little one who seems to be falling behind with their skills or just need peace of mind, you can get an evaluation for free. EI pays for Asa's therapy right now, after insurance. Asa has a home teacher who comes here to play with him each week too. I've been so happy with everything EI has done, we've had no problems at all. When Asa turns 3 in October he will no longer be covered under EI. That is why he will start school. Insurance doesn't pay for very much therapy at all so in October the school system will be in charge of Asa's therapy. He will go to school and get therapy there. He won't have his other therapist. The therapist who have been with him nearly his whole life! But that will be a post for another day...when I have more tissue!
So EI has a little ceremony for the kids who will turn 3 during the school year as well as those who go to the daycare they have. So Asa took a cap and gown picture a few weeks ago. He got a special graduation t-shirt. And this morning off we went to the ceremony. I was hesitant because this was just the situation he'd freak out about. But if he were to freak out then these were the people who'd understand the best! So off we went!
This is Asa trying to put on his graduation t-shirt. Obviously we need to work on his self dressing skills but he does love clothes!!!
Some kids from the daycare sang some songs. They had a little tap dance routine. There was lots of clapping and cheering. Asa was startled! But he didn't get sick!! He DID. NOT. GET. SICK!!! Maybe because I didn't feed him before we left and he had an empty tummy. I think though it was more due to the fact that he let all that excited energy out in other ways!
Have you ever held a frightened kitten? They claw and scratch and try to climb to the top of your head! That was Asa!!!! He would only stand in my lap, facing me. Each time there was clapping, he grabbed my ears, pulled my head into him and stepped all over me trying to climb onto my head! That is the only way I can describe it! He'd be fine, then there'd be clapping, then I was attacked! He yanked my glasses off 3 times and he has never taken my glasses off! Who knows what my hair looked like by the time his name was called. It was all really funny and I'd rather be climbed on than puked on any day!!!
Asa got his certificate and we got pictures with his therapists that were there. It was a fun morning.
And if each day was like this, I wouldn't be looking forward to school starting so much!
Gracie has been mothering Asa a lot lately. I did type "mothering" not "smothering" right?! There is a fine line with her! At least twice lately she has taken him to her room and tried to get him to take a nap. She has a whole system she goes through. It has never worked...until today!!! She laid him on her bottom bunk. She talked to him and rubbed him. She went and got a CD player and his bedtime CD. She sat it all up. And he went to sleep!! And then she covered him up. And then she switched blankets. And the she kissed him. And then we took pictures. Do you see were the smothering comes in yet! He did take a nap on her bed for about 20 minutes and then he rolled off the bed. YEP, off the bed. Head first. But don't worry he never hit the floor because his body was wedged between a little table and her bed! He dangled upside down for 10 seconds and he was fine! He never got sick!! I call that a pretty successful stressor filled day!!
And then today Asa had a graduation ceremony for Early Intervention. EI is the birth to three program here. Each state has a birth to three program and if you know of a little one who seems to be falling behind with their skills or just need peace of mind, you can get an evaluation for free. EI pays for Asa's therapy right now, after insurance. Asa has a home teacher who comes here to play with him each week too. I've been so happy with everything EI has done, we've had no problems at all. When Asa turns 3 in October he will no longer be covered under EI. That is why he will start school. Insurance doesn't pay for very much therapy at all so in October the school system will be in charge of Asa's therapy. He will go to school and get therapy there. He won't have his other therapist. The therapist who have been with him nearly his whole life! But that will be a post for another day...when I have more tissue!
So EI has a little ceremony for the kids who will turn 3 during the school year as well as those who go to the daycare they have. So Asa took a cap and gown picture a few weeks ago. He got a special graduation t-shirt. And this morning off we went to the ceremony. I was hesitant because this was just the situation he'd freak out about. But if he were to freak out then these were the people who'd understand the best! So off we went!
This is Asa trying to put on his graduation t-shirt. Obviously we need to work on his self dressing skills but he does love clothes!!!
Some kids from the daycare sang some songs. They had a little tap dance routine. There was lots of clapping and cheering. Asa was startled! But he didn't get sick!! He DID. NOT. GET. SICK!!! Maybe because I didn't feed him before we left and he had an empty tummy. I think though it was more due to the fact that he let all that excited energy out in other ways!
Have you ever held a frightened kitten? They claw and scratch and try to climb to the top of your head! That was Asa!!!! He would only stand in my lap, facing me. Each time there was clapping, he grabbed my ears, pulled my head into him and stepped all over me trying to climb onto my head! That is the only way I can describe it! He'd be fine, then there'd be clapping, then I was attacked! He yanked my glasses off 3 times and he has never taken my glasses off! Who knows what my hair looked like by the time his name was called. It was all really funny and I'd rather be climbed on than puked on any day!!!
Asa got his certificate and we got pictures with his therapists that were there. It was a fun morning.
And if each day was like this, I wouldn't be looking forward to school starting so much!
Gracie has been mothering Asa a lot lately. I did type "mothering" not "smothering" right?! There is a fine line with her! At least twice lately she has taken him to her room and tried to get him to take a nap. She has a whole system she goes through. It has never worked...until today!!! She laid him on her bottom bunk. She talked to him and rubbed him. She went and got a CD player and his bedtime CD. She sat it all up. And he went to sleep!! And then she covered him up. And then she switched blankets. And the she kissed him. And then we took pictures. Do you see were the smothering comes in yet! He did take a nap on her bed for about 20 minutes and then he rolled off the bed. YEP, off the bed. Head first. But don't worry he never hit the floor because his body was wedged between a little table and her bed! He dangled upside down for 10 seconds and he was fine! He never got sick!! I call that a pretty successful stressor filled day!!
Tuesday, July 27, 2010
New adventures
I've found a new and exciting blog that I've been following, Babies with iPads!!! It is just what it says, babies who use an iPad!! I had already loaded a few apps on my iPhone that were helpful for Asa but this lady has so many more ideas!!! I now have a whole page of apps just for Asa my iPhone! I got some ABA apps for free in April during autism awareness. Then I got 2 apps that make loud noises while we were in Vandy for the EEG. I tried to use them to get a startle but Asa just laughed! Now I have 2 AAC apps, Tap To Talk and MyTalk Lite. I adapted the MyTalk a little with our pics but both were free and I haven't decided if I want to pay for one and adapt it to Asa's needs. I also got (for free!) the Peek a Boo Barn and he is good at it! I may pay for the full version. Look Baby is fun but it is probably to babyish for most kids. Then I have 2 coloring and light apps, Spawn Lite and Glow Coloring. Anna taught me that if you like a pic on the screen you can take a picture of it! Fascinating!!! The app I'm most unsure about is one with pics of animals and when he touches the animal, it makes a noise. Asa isn't too crazy about animals so he really doesn't like this one at all. I'm hoping he'll grow into it though.
And I'm sure that was all completely boring and random unless you have a little one you are trying to entertain while you are on the go!
And for some fun news...Asa went on a slip and slide tonight! Some of the youth from church rolled out some wide black plastic on a hill beside the church. They used a water hose to turn it into a slip and slide! It was so much fun. Add some baby shampoo and some pool floats and you have yourself a water park ready attraction. Ok, maybe not that good but it was fun! As they finished up I took Cade and Gracie over cause I knew they'd love it and they did!! I decided to let Asa ride while I sat on a floaty. He laughed and kicked and splashed in the water at the bottom! This was the first time Asa has ever even been down a slide. Can you believe that! I don't know why I never tried it before. We may have a new adventure tomorrow on the swingset, unless it is hot and humid again!
Oh and it is popsicle week at the therapy center so Cade and Asa both left with a green popsicle! Asa could barely wait to get to the car and get a bib on. It did keep him cool since the car was so hot though! Now, how can I keep popsicles frozen in the car while we do all our other errands?!
Oh and I started Christmas shopping today! Yay!! I several things checked off my list. I had Cade with me so I was limited on what I could get for my own kids!! I've taken the first step though so I feel better! Last year I waited much too long to start and was panicking when I hadn't finished by Dec. 1st. I have no plans to wait that long this year!!
And I'm sure that was all completely boring and random unless you have a little one you are trying to entertain while you are on the go!
And for some fun news...Asa went on a slip and slide tonight! Some of the youth from church rolled out some wide black plastic on a hill beside the church. They used a water hose to turn it into a slip and slide! It was so much fun. Add some baby shampoo and some pool floats and you have yourself a water park ready attraction. Ok, maybe not that good but it was fun! As they finished up I took Cade and Gracie over cause I knew they'd love it and they did!! I decided to let Asa ride while I sat on a floaty. He laughed and kicked and splashed in the water at the bottom! This was the first time Asa has ever even been down a slide. Can you believe that! I don't know why I never tried it before. We may have a new adventure tomorrow on the swingset, unless it is hot and humid again!
Oh and it is popsicle week at the therapy center so Cade and Asa both left with a green popsicle! Asa could barely wait to get to the car and get a bib on. It did keep him cool since the car was so hot though! Now, how can I keep popsicles frozen in the car while we do all our other errands?!
Oh and I started Christmas shopping today! Yay!! I several things checked off my list. I had Cade with me so I was limited on what I could get for my own kids!! I've taken the first step though so I feel better! Last year I waited much too long to start and was panicking when I hadn't finished by Dec. 1st. I have no plans to wait that long this year!!
Friday, July 23, 2010
EEG with pictures!
This is waiting at Vandy before we got into a room. We had parked in the parking garage, walked across the street, peeked at the train display and waited for a room. He was border line freaking out at this point. He started fretting when we pulled in the garage. The wind blew him as we crossed the street. The train display was loud and several kids gathered around. I was afraid he'd get sick and no one would have "proof" of it! He did however giggle on the elevator on the way up, even though it stopped several times before hitting the 7th floor! He has NEVER laughed and usually screams! This should have been an indication that things weren't going to go as I had planned!
This is right after he got all the electrodes attached, wrapped and ready to test. There are no pictures of the hooking up cause I was doing the holding and despite his low muscle tone, he doesn't lack muscle strength, especially when held down and tortured! It was quite traumatic for him and he screamed like crazy but he never got sick! Again a sign this wasn't going to be as easy as I had hoped!
All that gauze is covering up this mess of wires! This was as he was getting unhooked but it really shows how many electrodes they use.
Asa's EEG and the video of him in bed! I felt like I was on candid camera!!
Again with the surprises! Asa was an eating machine!! He had all his Pedisure by mouth. He had applesauce, mashed potatoes and gravy, sliced carrots, juice, sugar cookie, Gerber crunchies and roll!!! Not all at once but this is more than he tries in a week!!! I was shocked and have lots of pictures of him eating!
A friend came to visit and instead of being cautious and jumpy, Asa was all about playing with Ms. Cheryl!! As she was talking about her grandson going to school, she used the word "bus" and Asa started doing the hand motions to Wheels on the Bus!!! I first "met" Cheryl on an online support group for families with hypotonic kids. We learned we were both from TN and had Drs. at Vandy. Soon Asa was diagnosised with mito and now her grandson, Bricen, is being tested. Bricen had this same test done earlier this month and saw Dr. K this month too!! I met Cheryl and Bricen in real life at a mito meeting earlier in this year! Now they are not only special online friends but real life friends as well! Thanks Cheryl for breaking up my night and playing with Asa!!!
Ready for bed in his little wifebeater and boxers!! Like a little man! He liked all those wires and made it fine all night with them at the top of his bed. I didn't let him play with them all night!
The whole test wasn't so bad though! He enjoyed hanging out in bed. He got new toys to play with from the Child Life lady.
This is right after the "startle"! Notice the stacking, slouching and droopy eyes. He was all drooly and gagging and I hooked him up to drain. (I didn't post a pic of that though! You're welcome!)
He got to get in a big bathtub to clean up! He still takes a bath in our kitchen sink to save my aching back but he did love being in a big tub! He was a splashing machine!!
He got all red face and droopy again when he fought getting out of the tub! Now he is clean(er) and ready to go home!!
I tried and tried to induce a startle on Thursday and then on Friday morning. I was doing everything I could think of to rattle him and he laughed!! He may have jumped but he always laughed!! I was loud, I slammed doors, I tickled and rough housed, I did everything I could think of!!!
So how did we finally get the startle? The neurologist came in with 6 or 7 other people (nurses, care partners, students, attendings). They came to startle him but before that even started he touched Asa's arm to examine him and Asa started screaming and getting rattlely! I was pretty sure that had done the trick but for good measure the neuro slammed the bathroom door! The others clapped (I think they were going for a unison clap but they missed!). Asa was definitely reacting but for safe measure, they repeated the whole thing again! Bathroom door slam, random clapping, loud talking and Asa screaming!! I mean SCREAMING!!! It worked! He calmed down and I laid him down and he went to sleep! They witnessed his whole workup and it wasn't a seizure!! It WAS NOT a seizure! I'm so glad they got a really good look at the whole episode and even more happy that it isn't seizure related. Woo Hoo!
Turns out the little guy freaks out about what most of us wouldn't notice as stimuli. Most of us aren't bothered by wind in our faces, noisy crowds, ice makers, yelling, new places. But Asa is bothered! Big time bothered. I'm relieved to know that it isn't harmful to him to have these episodes cause it is rather hard to avoid them all. Hopefully he was get better at adjusting to this world and these episodes will slowly go away. They have decreased but we have decreased his exposure too!
I'm glad we had the test done! I won't worry about him going to school as much. I'm sure he'll have many episodes in that environment! And Asa and I both kinda enjoyed our 2 days away from home. Since there was no majorly invasive stuff done to him, it was kinda like staying at a hotel! I ordered room service and watched TLC. Asa had a quiet room (mostly) and played with new toys. Someone brought me his Pedisure and meds and I gave them to him. I had a good visit that broke up some down time! Not so bad for a night and 2 days in this circumstance! I have NO desire to go back under other circumstances and no desire to go back for this test anytime soon!!!!
This is right after he got all the electrodes attached, wrapped and ready to test. There are no pictures of the hooking up cause I was doing the holding and despite his low muscle tone, he doesn't lack muscle strength, especially when held down and tortured! It was quite traumatic for him and he screamed like crazy but he never got sick! Again a sign this wasn't going to be as easy as I had hoped!
All that gauze is covering up this mess of wires! This was as he was getting unhooked but it really shows how many electrodes they use.
Asa's EEG and the video of him in bed! I felt like I was on candid camera!!
Again with the surprises! Asa was an eating machine!! He had all his Pedisure by mouth. He had applesauce, mashed potatoes and gravy, sliced carrots, juice, sugar cookie, Gerber crunchies and roll!!! Not all at once but this is more than he tries in a week!!! I was shocked and have lots of pictures of him eating!
A friend came to visit and instead of being cautious and jumpy, Asa was all about playing with Ms. Cheryl!! As she was talking about her grandson going to school, she used the word "bus" and Asa started doing the hand motions to Wheels on the Bus!!! I first "met" Cheryl on an online support group for families with hypotonic kids. We learned we were both from TN and had Drs. at Vandy. Soon Asa was diagnosised with mito and now her grandson, Bricen, is being tested. Bricen had this same test done earlier this month and saw Dr. K this month too!! I met Cheryl and Bricen in real life at a mito meeting earlier in this year! Now they are not only special online friends but real life friends as well! Thanks Cheryl for breaking up my night and playing with Asa!!!
Ready for bed in his little wifebeater and boxers!! Like a little man! He liked all those wires and made it fine all night with them at the top of his bed. I didn't let him play with them all night!
The whole test wasn't so bad though! He enjoyed hanging out in bed. He got new toys to play with from the Child Life lady.
This is right after the "startle"! Notice the stacking, slouching and droopy eyes. He was all drooly and gagging and I hooked him up to drain. (I didn't post a pic of that though! You're welcome!)
He got to get in a big bathtub to clean up! He still takes a bath in our kitchen sink to save my aching back but he did love being in a big tub! He was a splashing machine!!
He got all red face and droopy again when he fought getting out of the tub! Now he is clean(er) and ready to go home!!
I tried and tried to induce a startle on Thursday and then on Friday morning. I was doing everything I could think of to rattle him and he laughed!! He may have jumped but he always laughed!! I was loud, I slammed doors, I tickled and rough housed, I did everything I could think of!!!
So how did we finally get the startle? The neurologist came in with 6 or 7 other people (nurses, care partners, students, attendings). They came to startle him but before that even started he touched Asa's arm to examine him and Asa started screaming and getting rattlely! I was pretty sure that had done the trick but for good measure the neuro slammed the bathroom door! The others clapped (I think they were going for a unison clap but they missed!). Asa was definitely reacting but for safe measure, they repeated the whole thing again! Bathroom door slam, random clapping, loud talking and Asa screaming!! I mean SCREAMING!!! It worked! He calmed down and I laid him down and he went to sleep! They witnessed his whole workup and it wasn't a seizure!! It WAS NOT a seizure! I'm so glad they got a really good look at the whole episode and even more happy that it isn't seizure related. Woo Hoo!
Turns out the little guy freaks out about what most of us wouldn't notice as stimuli. Most of us aren't bothered by wind in our faces, noisy crowds, ice makers, yelling, new places. But Asa is bothered! Big time bothered. I'm relieved to know that it isn't harmful to him to have these episodes cause it is rather hard to avoid them all. Hopefully he was get better at adjusting to this world and these episodes will slowly go away. They have decreased but we have decreased his exposure too!
I'm glad we had the test done! I won't worry about him going to school as much. I'm sure he'll have many episodes in that environment! And Asa and I both kinda enjoyed our 2 days away from home. Since there was no majorly invasive stuff done to him, it was kinda like staying at a hotel! I ordered room service and watched TLC. Asa had a quiet room (mostly) and played with new toys. Someone brought me his Pedisure and meds and I gave them to him. I had a good visit that broke up some down time! Not so bad for a night and 2 days in this circumstance! I have NO desire to go back under other circumstances and no desire to go back for this test anytime soon!!!!
Thursday, July 22, 2010
Live for Vandy!
Asa and I are spending the night at Vandy! Asa is having a 24 hour EEG done. It may last longer. :(
I guess that would be a good thing in the sense that he isn't having frequent seizures but who really wants to in the hospital more than they have to. It is thought that Asa is having startle seizures...meaning he gets startled and it causes a seizure. So in theory we can startle him, induce a seizure and go home. Only problem is, I can't get him to startle!! He cracked up in the elevator (and I can't tell you how crazy that is), he laughed at the remote control car that terrified him yesterday, even the torture of getting all hooked up didn't do it! He screamed enough but not a full on episode.
As bad as it sounds, I hope he freaks out tomorrow! Or the kid that is wandering the hallway yelling may do it tonight! As for me, I'm going to bed!!
I guess that would be a good thing in the sense that he isn't having frequent seizures but who really wants to in the hospital more than they have to. It is thought that Asa is having startle seizures...meaning he gets startled and it causes a seizure. So in theory we can startle him, induce a seizure and go home. Only problem is, I can't get him to startle!! He cracked up in the elevator (and I can't tell you how crazy that is), he laughed at the remote control car that terrified him yesterday, even the torture of getting all hooked up didn't do it! He screamed enough but not a full on episode.
As bad as it sounds, I hope he freaks out tomorrow! Or the kid that is wandering the hallway yelling may do it tonight! As for me, I'm going to bed!!
Tuesday, July 20, 2010
Terrific Tuesday
Asa had OT today. I don't go back to the therapy room anymore and this may be the most wonderful 45 minutes of my week! I usually take a book into the waiting room and read. I'm ready "Crazy Love" by Francis Chan right now. I'm only on chapter 4 but so far I love it! There was a time I could read a huge book in just a few days but I find myself rereading the same sentence over and over now.
Asa has been playing with oatmeal in OT. Dry and wet oatmeal. He doesn't have to eat it but the goal is to play with it and touch it. To become one with the oatmeal. It is funny how a little thing like oatmeal can cause such resistance. Lately Asa has come out of therapy smelling like pancakes, as in maple syrup and brown sugar oatmeal. That is my favorite flavor and I love sniffing of Asa the rest of the day. He comes out smelling much better than when I send him in!!!
Asa has a 24 hour EEG at Vandy this week. It was scheduled for Friday but they called this morning and they have a bed available on Thursday so we took it! This test is really an easy test. They will attach leads to Asa's head and then monitor him for seizure activity. Just a reminder, Dr. K and his GI think he may be having startle seizures and his neuro has called them autonomic dysfunction. This will show us positively whether it is seizures or not. The test is not painful other than the time it takes to place the electrodes on his head and then spending the duration of the test hooked up and in a hospital room with people watching via camera and coming in the room. For you or I it would be easy-peasy. For a kid like Asa, with sensory issues, it can be a nightmare! He won't like being at the hospital (believe me he can tell) or being hooked up or having to stayed hooked up for at least 24 hours. In an odd way this will work to my benefit. My job is to startle him into an "episode" so the technicians can measure what is going on in the brain during an event. But I have no desire to spend at least 24 hours with him in constant episode mode. He is a hand full when he is in a episode. Scratch that, he is 2 arms full and then some! Nor do I like the idea of freaking him out so much that he pukes and zonks out. I've spent the last year trying to predict these episodes and prevent them from happening! But you do what you gotta do. Cade has been giving me tips on how to freak him out! Nerf gun, fan, wrestling, the list goes on...Cade is good at his job!
It just so happens that I pulled out a brochure on the EEG testing the last time we had a neuro appt. I was cracking up laughing while reviewing it tonight. First of all there are 5 pictures of happy, smiling kids on it. Only one of them is hooked up and I dare say it was only for photo purposes! Seriously there are like 6 leads on his head! And they throw in a pic of a technician too. For most of the test there are no special instructions with the exception of sleep deprived EEG but that is self explanatory if you ask me. Another special instruction for many of the test is "do not allow your child to consume any caffeine after midnight"! Really, who lets their child have caffeine after midnight! Who is even awake after midnight?! I'm trying to find the humor in all things!!!
There was a time the very thought of seizures was terrifying to me. Lots of mito kids have them so it seems likely that we'd cross that bridge but it really scared me. Now that someone has said the words out loud, the fear is somehow gone. Maybe I've walked this road long enough to know that you deal with what you've got and go on living. Maybe it is because I've seen many kids diagnosed and watched and learned as the families have adjusted. Maybe it is because I really believe Asa's issues to be autonomic. All of the above is likely to be true but what is even more true is that I have peace that passes all understanding. I have a peace and assurance that I'm not alone on this test and journey. Now come Thursday at 1pm, I maybe clinging to these words and promises as much as Asa will be clinging to me but I have faith that we will deal with the outcome in the same way we have dealt with a mito diagnosis and a feeding tube and all the other stuff that comes our way. My God will have nothing less from me than my reliance on Him and His wisdom and plans!
Asa has been playing with oatmeal in OT. Dry and wet oatmeal. He doesn't have to eat it but the goal is to play with it and touch it. To become one with the oatmeal. It is funny how a little thing like oatmeal can cause such resistance. Lately Asa has come out of therapy smelling like pancakes, as in maple syrup and brown sugar oatmeal. That is my favorite flavor and I love sniffing of Asa the rest of the day. He comes out smelling much better than when I send him in!!!
Asa has a 24 hour EEG at Vandy this week. It was scheduled for Friday but they called this morning and they have a bed available on Thursday so we took it! This test is really an easy test. They will attach leads to Asa's head and then monitor him for seizure activity. Just a reminder, Dr. K and his GI think he may be having startle seizures and his neuro has called them autonomic dysfunction. This will show us positively whether it is seizures or not. The test is not painful other than the time it takes to place the electrodes on his head and then spending the duration of the test hooked up and in a hospital room with people watching via camera and coming in the room. For you or I it would be easy-peasy. For a kid like Asa, with sensory issues, it can be a nightmare! He won't like being at the hospital (believe me he can tell) or being hooked up or having to stayed hooked up for at least 24 hours. In an odd way this will work to my benefit. My job is to startle him into an "episode" so the technicians can measure what is going on in the brain during an event. But I have no desire to spend at least 24 hours with him in constant episode mode. He is a hand full when he is in a episode. Scratch that, he is 2 arms full and then some! Nor do I like the idea of freaking him out so much that he pukes and zonks out. I've spent the last year trying to predict these episodes and prevent them from happening! But you do what you gotta do. Cade has been giving me tips on how to freak him out! Nerf gun, fan, wrestling, the list goes on...Cade is good at his job!
It just so happens that I pulled out a brochure on the EEG testing the last time we had a neuro appt. I was cracking up laughing while reviewing it tonight. First of all there are 5 pictures of happy, smiling kids on it. Only one of them is hooked up and I dare say it was only for photo purposes! Seriously there are like 6 leads on his head! And they throw in a pic of a technician too. For most of the test there are no special instructions with the exception of sleep deprived EEG but that is self explanatory if you ask me. Another special instruction for many of the test is "do not allow your child to consume any caffeine after midnight"! Really, who lets their child have caffeine after midnight! Who is even awake after midnight?! I'm trying to find the humor in all things!!!
There was a time the very thought of seizures was terrifying to me. Lots of mito kids have them so it seems likely that we'd cross that bridge but it really scared me. Now that someone has said the words out loud, the fear is somehow gone. Maybe I've walked this road long enough to know that you deal with what you've got and go on living. Maybe it is because I've seen many kids diagnosed and watched and learned as the families have adjusted. Maybe it is because I really believe Asa's issues to be autonomic. All of the above is likely to be true but what is even more true is that I have peace that passes all understanding. I have a peace and assurance that I'm not alone on this test and journey. Now come Thursday at 1pm, I maybe clinging to these words and promises as much as Asa will be clinging to me but I have faith that we will deal with the outcome in the same way we have dealt with a mito diagnosis and a feeding tube and all the other stuff that comes our way. My God will have nothing less from me than my reliance on Him and His wisdom and plans!
Saturday, July 17, 2010
Long lost friends
Do ya'll remember me? Is anyone even checking in? Is your summer as busy as mine and you've had ZERO time to blog surf?!
I can't believe it has been a week since I blogged last. More importantly, I can't believe that last weekend I was enjoying some girl time! LOL, seems like much longer ago!
We've had VBS at church this week and with all the "regular" appts we have, it was one busy week! I love VBS week and the theme this year was Saddle Ridge Ranch so the western decor was lots of fun too! It take a ton of energy to have 5 days of VBS though. And energy is something I could use more of! It was so worth it though. The nights actually went by quickly and the kids were so smart and fun. I have lots of cute tales! Tomorrow is family night and then it will officially be done for another year.
Asa stayed home with Barry since he isn't exactly a night owl! Plus, the loud, excited kids aren't his thing either! Barry would walk in from work and I'd leave with the big kids. By the time we got home at 9, Barry and Asa would be in the bed! I have to say, I didn't like not seeing my hubby and having a family supper together. Asa was pretty clingy this week and I wondered if it was because no one was home all evening with him. He notices when you are putting on shoes to go and he gets excited. He was pretty upset a few nights cause we left him.
Asa's eating isn't any better either. We've added the Reglan back and he still isn't interested in food. He is even gagging and refusing again. I'm using the pump every morning and even some of the afternoons. This roller coaster is so frustrating! He did eat several bites of my baked sweet potato tonight. I put some in a bowl and he played in it! He got really messy!! He likes to get his feet involved and kept putting him foot on the table. He even rubbed some sweet potato into his toes. Strange kid!!
We've been playing some hand games and he really gets it! He can do "Wheels on the bus" when I start singing it. He does the "round and round" part and the "swish, swish" for the wipers. He also has "Patty Cake" down. He knows where his eyes, nose, ears, belly button, Mickey button, toes and hands are. I can also ask "Who is a big boy?" and he raises his arms up high!!! I know these things seem insignificant but to us they are huge!! Just some of the inchstones that we celebrate around here!!!
Do you have time for a few funnies from VBS? I had the Kindergarten class which should mean they have finished K but it ended up the smaller kids class had a lot so I took a few of the older 4's and 5's too. I had 4 kids most night so we had lots of time to get to know each other and chat! One little bitty told me she didn't like the skin of her apple slices we were having for supper. I said that was fine just don't eat that part. But I also mentioned that the vitamins live in the red part so she should try a bite or two. Later I noticed this same little girl licking her apple skin...she'd already eaten the apple part! I asked why she was doing that and she informed me she was getting the vitamins off. I tried to convince her it needed to be chewed but she was convinced she could see the vitamins and was licking them off! She soon had the other 3 kids convinced and they were licking their apples too! Sorry parents!
I also had to do a lot of reminding about how we behave when someone is praying. Hands and feet still, head bowed, quiet, talking to God...nothing too difficult. Twice I was told my prayers made them want to go to sleep and once I even heard some soft, playful snores while I prayed! NICE!! And I thought I was keeping my prayers shorter for the kids! LOL!
I really do love VBS! It is a lot of work but the church is so alive with energy during VBS week. And not just the energy from the Kool-aide and candy, though there was plenty of that! I mean alive with the energy of kids who are just discovering the teachings about Jesus and God and salvation. Many of our kids have grown up in church but we get to cover a lot of truths in this week and the kids really have a good time learning how to apply the lessons to their lives! It is an exciting time for all of us!
I'm not sure our days are gonna slow down until school starts back in 2 weeks. There is still a lot to do between now and then though. Asa has his 48 hour EEG at Vandy on Friday. Hopefully we can get what we need and be out on Saturday morning. I'll be glad to get this test done!!!
Thanks for hanging on my friends who are still around! I have some pics to post but that'll have to be another night! :)
I can't believe it has been a week since I blogged last. More importantly, I can't believe that last weekend I was enjoying some girl time! LOL, seems like much longer ago!
We've had VBS at church this week and with all the "regular" appts we have, it was one busy week! I love VBS week and the theme this year was Saddle Ridge Ranch so the western decor was lots of fun too! It take a ton of energy to have 5 days of VBS though. And energy is something I could use more of! It was so worth it though. The nights actually went by quickly and the kids were so smart and fun. I have lots of cute tales! Tomorrow is family night and then it will officially be done for another year.
Asa stayed home with Barry since he isn't exactly a night owl! Plus, the loud, excited kids aren't his thing either! Barry would walk in from work and I'd leave with the big kids. By the time we got home at 9, Barry and Asa would be in the bed! I have to say, I didn't like not seeing my hubby and having a family supper together. Asa was pretty clingy this week and I wondered if it was because no one was home all evening with him. He notices when you are putting on shoes to go and he gets excited. He was pretty upset a few nights cause we left him.
Asa's eating isn't any better either. We've added the Reglan back and he still isn't interested in food. He is even gagging and refusing again. I'm using the pump every morning and even some of the afternoons. This roller coaster is so frustrating! He did eat several bites of my baked sweet potato tonight. I put some in a bowl and he played in it! He got really messy!! He likes to get his feet involved and kept putting him foot on the table. He even rubbed some sweet potato into his toes. Strange kid!!
We've been playing some hand games and he really gets it! He can do "Wheels on the bus" when I start singing it. He does the "round and round" part and the "swish, swish" for the wipers. He also has "Patty Cake" down. He knows where his eyes, nose, ears, belly button, Mickey button, toes and hands are. I can also ask "Who is a big boy?" and he raises his arms up high!!! I know these things seem insignificant but to us they are huge!! Just some of the inchstones that we celebrate around here!!!
Do you have time for a few funnies from VBS? I had the Kindergarten class which should mean they have finished K but it ended up the smaller kids class had a lot so I took a few of the older 4's and 5's too. I had 4 kids most night so we had lots of time to get to know each other and chat! One little bitty told me she didn't like the skin of her apple slices we were having for supper. I said that was fine just don't eat that part. But I also mentioned that the vitamins live in the red part so she should try a bite or two. Later I noticed this same little girl licking her apple skin...she'd already eaten the apple part! I asked why she was doing that and she informed me she was getting the vitamins off. I tried to convince her it needed to be chewed but she was convinced she could see the vitamins and was licking them off! She soon had the other 3 kids convinced and they were licking their apples too! Sorry parents!
I also had to do a lot of reminding about how we behave when someone is praying. Hands and feet still, head bowed, quiet, talking to God...nothing too difficult. Twice I was told my prayers made them want to go to sleep and once I even heard some soft, playful snores while I prayed! NICE!! And I thought I was keeping my prayers shorter for the kids! LOL!
I really do love VBS! It is a lot of work but the church is so alive with energy during VBS week. And not just the energy from the Kool-aide and candy, though there was plenty of that! I mean alive with the energy of kids who are just discovering the teachings about Jesus and God and salvation. Many of our kids have grown up in church but we get to cover a lot of truths in this week and the kids really have a good time learning how to apply the lessons to their lives! It is an exciting time for all of us!
I'm not sure our days are gonna slow down until school starts back in 2 weeks. There is still a lot to do between now and then though. Asa has his 48 hour EEG at Vandy on Friday. Hopefully we can get what we need and be out on Saturday morning. I'll be glad to get this test done!!!
Thanks for hanging on my friends who are still around! I have some pics to post but that'll have to be another night! :)
Saturday, July 10, 2010
Deeper Still....
I have had a wonderful past 2 days! A neighboring church was showing a video conference of Kay Arthur, Priscilla Shirer and Beth Moore. I've seen Beth before and I knew she wouldn't disappoint but I was surprised when the other ladies were both just as amazing!
On Friday night we enjoyed some praise and worship music with a live band, By Grace. Today we had some worship music via video and even some Travis Cottrell via video! I looooove me some praise and worship music!!!
But back to the conference... Faithful, Abundant, True. Now I'd say that I knew all these things about Christ and my Savior already. But this weekend we went "deeper still" on these truths.
Kay taught Hebrews. The whole book of Hebrews! She was so fast and thorough, the night flew by! She started off the theme of the meetings by challenging us to "rest in faith". As Christians we must study and understand and soak up the living Word of God so that we can cling to it and rest on it. She literally laid her head on her Bible and gripped it to her chest. We must study and know what the Bible says so that we can claim the promises God has given to us in His word!
This morning, Priscilla Shirer taught on Ephesians 3:20-21, "Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen." This is a pretty common scripture and one I've clung to many times but when she broke it apart and we really studied it, it took on a whole new meaning.
This study really spoke to me and it probably has a lot to do with our situation with Asa. There was a time that all I prayed for was a complete healing and that we'd just wake up and Asa would be "normal". Then once we had such a dire diagnosis my definition of "miracle" changed. I consider it a miracle that Asa is as healthy as he is. A miracle that he is making progress in his therapies. A miracle that I'm able to even get up in the morning! I am a tired, weak, helpless person without God in my life! It is only because of Him lifting me up that I'm able to do any of the things Asa requires!
Priscilla, though, reminded me that God able to go beyond my beyond. He can go past my way past! For example, you leave the house and tell your teenager that she needs to clean her room before you get back. That is the expectation. When you return, her room is clean and so it the rest of the house. That is past your way past. Then you are led to your bathroom where she has drawn you a bubble bath. Now she is way past your way past. Then she has supper done and is ready to serve you in bed. So waaaaaaay past your way past!!!! That is God! He can go waaaaaay past our way past. Whatever you can even think, he can out do even that! He may not choose to go way past in the exact moment that I'd like for Him to but He is the power to do it! In those times when I wonder why He won't do it I have to have faith and cling to the promise of Jeremiah 29:11 and rest in the knowledge that God has a plan for me, a plan of hope and not of harm!!!
Beth closed up the session by helping us discern the truth. Beth had been "punked" and told how she didn't follow her Holy Spirit gut when He was telling her to look deeper. Not only did she help us discern the truth in other people but also the truths of Christ. Again, we have to be in the Word and studying so we can know what don't know we need to know! We can have knowledge that we don't know we need until we need it. Only in studying and listening to God can we discern the truth from untruths. We know that in the end days there will be many false prophets and teachings. In fact, today it would be nice if some of the untruths that is taught were true. Untruths like "if it feels good do it" or "lifestyle choices" or "it is ok as long as they aren't hurting anyone"! Those are untruths though! I don't feel like Beth's message spoke to me as much as the other ladies did but she has great points and I'll be keeping my note handy because I'm sure I'll need them in the near future!!!
I had a great couple of days studying God's Word and seeking Him. I'm so thankful to the group of godly ladies who seek Him out too and often invite me along so I can take my journey along side them! Thank you ladies!!!
On Friday night we enjoyed some praise and worship music with a live band, By Grace. Today we had some worship music via video and even some Travis Cottrell via video! I looooove me some praise and worship music!!!
But back to the conference... Faithful, Abundant, True. Now I'd say that I knew all these things about Christ and my Savior already. But this weekend we went "deeper still" on these truths.
Kay taught Hebrews. The whole book of Hebrews! She was so fast and thorough, the night flew by! She started off the theme of the meetings by challenging us to "rest in faith". As Christians we must study and understand and soak up the living Word of God so that we can cling to it and rest on it. She literally laid her head on her Bible and gripped it to her chest. We must study and know what the Bible says so that we can claim the promises God has given to us in His word!
This morning, Priscilla Shirer taught on Ephesians 3:20-21, "Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen." This is a pretty common scripture and one I've clung to many times but when she broke it apart and we really studied it, it took on a whole new meaning.
This study really spoke to me and it probably has a lot to do with our situation with Asa. There was a time that all I prayed for was a complete healing and that we'd just wake up and Asa would be "normal". Then once we had such a dire diagnosis my definition of "miracle" changed. I consider it a miracle that Asa is as healthy as he is. A miracle that he is making progress in his therapies. A miracle that I'm able to even get up in the morning! I am a tired, weak, helpless person without God in my life! It is only because of Him lifting me up that I'm able to do any of the things Asa requires!
Priscilla, though, reminded me that God able to go beyond my beyond. He can go past my way past! For example, you leave the house and tell your teenager that she needs to clean her room before you get back. That is the expectation. When you return, her room is clean and so it the rest of the house. That is past your way past. Then you are led to your bathroom where she has drawn you a bubble bath. Now she is way past your way past. Then she has supper done and is ready to serve you in bed. So waaaaaaay past your way past!!!! That is God! He can go waaaaaay past our way past. Whatever you can even think, he can out do even that! He may not choose to go way past in the exact moment that I'd like for Him to but He is the power to do it! In those times when I wonder why He won't do it I have to have faith and cling to the promise of Jeremiah 29:11 and rest in the knowledge that God has a plan for me, a plan of hope and not of harm!!!
Beth closed up the session by helping us discern the truth. Beth had been "punked" and told how she didn't follow her Holy Spirit gut when He was telling her to look deeper. Not only did she help us discern the truth in other people but also the truths of Christ. Again, we have to be in the Word and studying so we can know what don't know we need to know! We can have knowledge that we don't know we need until we need it. Only in studying and listening to God can we discern the truth from untruths. We know that in the end days there will be many false prophets and teachings. In fact, today it would be nice if some of the untruths that is taught were true. Untruths like "if it feels good do it" or "lifestyle choices" or "it is ok as long as they aren't hurting anyone"! Those are untruths though! I don't feel like Beth's message spoke to me as much as the other ladies did but she has great points and I'll be keeping my note handy because I'm sure I'll need them in the near future!!!
I had a great couple of days studying God's Word and seeking Him. I'm so thankful to the group of godly ladies who seek Him out too and often invite me along so I can take my journey along side them! Thank you ladies!!!
Thursday, July 8, 2010
A fun night but a rough day
Asa has had a rough day today. He has been refluxing all day. In PT he spit up some and the whole time he was drooling this yucky drool. Needless to say, feeding therapy didn't go so well! He gagged and tried to poke his eyes out the whole time! He did better once he was working on language skills but feeding was a no-go!
He did perk up this afternoon and was eager for his lunch cup of Pedisure at 1pm, one hour later than usual. At 4pm we had a treat of soft serve chocolate ice cream and I fed some to Asa. OK, I fed a lot to Asa! He loved it and used "more" many, many times. He has had trouble with chocolate numerous times but I still keep giving it to him. How can one go through life without chocolate?! Well, tonight he was gagging again and spitting up and refluxing. I won't blame it solely on the ice cream though since he'd been like this all day, but it was worse tonight!
We stopped the Reglan a week or so ago and maybe that is the reason for the bad reflux. I started it again tonight. Maybe tomorrow will be better. It has to be a miserable feeling to be refluxing all the time! I remember how horrible I felt when I was pregnant and had reflux. YUCK!!
Last night, my mom, Anna, Cade, Gracie, Timothy (my nephew) and I went to see Chris Tomlin and tobyMac in concert. Chris Tomlin is an amazing praise and worship leader. His music and words are so uplifting and moving. Several of his songs just bring tears to my eyes! tobyMac, on the other hand, is a middle aged, white guy, Christian, rapper. Sounds like a likely combo, right?! But it was great!!! I'm not sure how much the boys like Chris Tomlin but all the kids loved tobyMac!! Moma had to go into the hallway and put toilet paper in her ears!! He was really loud and you really couldn't understand the words like you can on the radio but thankfully I know all the words to his songs since we have a dozen of his CDs around here!! :)
Midway through toby's performance, the music stopped and toby had gone off stage and was standing in the middle of the audience, very close to us!!!! The stage was so busy no one had even noticed that he left and made it through the crowd!!! He sang several songs right there!! It was a great night!
Today I realize how old I am!! My hands are bruised from clapping like crazy! My arms are tired from the clapping and swaying and all you do at concerts! And lastly, I didn't join in ALL of the jumping around because I realized that after 4 kids you have to be cautious of jumping around unless you are wearing a Depends!! Next time I'll know better!!! :)
He did perk up this afternoon and was eager for his lunch cup of Pedisure at 1pm, one hour later than usual. At 4pm we had a treat of soft serve chocolate ice cream and I fed some to Asa. OK, I fed a lot to Asa! He loved it and used "more" many, many times. He has had trouble with chocolate numerous times but I still keep giving it to him. How can one go through life without chocolate?! Well, tonight he was gagging again and spitting up and refluxing. I won't blame it solely on the ice cream though since he'd been like this all day, but it was worse tonight!
We stopped the Reglan a week or so ago and maybe that is the reason for the bad reflux. I started it again tonight. Maybe tomorrow will be better. It has to be a miserable feeling to be refluxing all the time! I remember how horrible I felt when I was pregnant and had reflux. YUCK!!
Last night, my mom, Anna, Cade, Gracie, Timothy (my nephew) and I went to see Chris Tomlin and tobyMac in concert. Chris Tomlin is an amazing praise and worship leader. His music and words are so uplifting and moving. Several of his songs just bring tears to my eyes! tobyMac, on the other hand, is a middle aged, white guy, Christian, rapper. Sounds like a likely combo, right?! But it was great!!! I'm not sure how much the boys like Chris Tomlin but all the kids loved tobyMac!! Moma had to go into the hallway and put toilet paper in her ears!! He was really loud and you really couldn't understand the words like you can on the radio but thankfully I know all the words to his songs since we have a dozen of his CDs around here!! :)
Midway through toby's performance, the music stopped and toby had gone off stage and was standing in the middle of the audience, very close to us!!!! The stage was so busy no one had even noticed that he left and made it through the crowd!!! He sang several songs right there!! It was a great night!
Today I realize how old I am!! My hands are bruised from clapping like crazy! My arms are tired from the clapping and swaying and all you do at concerts! And lastly, I didn't join in ALL of the jumping around because I realized that after 4 kids you have to be cautious of jumping around unless you are wearing a Depends!! Next time I'll know better!!! :)
Monday, July 5, 2010
Our loooong weekend!
We have had a great, long weekend. Barry has been off work for 4 days, practically unheard of! Today we took Cade and Gracie to see Toy Story 3 to celebrate the end of summer school. Sure, that sounds like a bribe but whatever! They went to summer school and I rewarded them! The movie was cute. Asa stayed home with Anna and napped the whole time we were gone! He was one tired puppy!! I did have thoughts of taking him with us but given is sensory issues I changed my mind. He has gotten so much better with that stuff and many times he enjoys things that used to make him so scared and then sick. Anyway, the movie was loud so I'm glad I didn't take him.
He is so up and down with the noise issues lately that it is any ones guess how he'll react to a situation these days. For instance, Barry took Asa home during church on Sunday because a little girl was kinda loud and Asa was freaking out. She wasn't overly loud and it didn't bother the other little girl in there but Asa was upset! Barry tried taking Asa to another room but that didn't work so they came home. Makes me wonder about how school will go!
But then the fireworks! Wow, the fireworks!! We had ear covers for Asa to wear when we shot fireworks but I still thought he'd end up going home. I was helping get the next fireworks ready so Barry was holding Asa. He said at first Asa resisted the ear covers but then after they left them off for a second Asa realized how loud it was and didn't bother them again. He sat happily in Barry's lap while we shot fireworks and he laughed! Yes, my boy who startles and cries when someone gets ice in a glass, when I sneeze, when Cade shoots a Nerf gun...he LAUGHED at the fireworks! All the fireworks! Each time they went up, he giggled!!!
Man, if had known that would be his reaction, I could have saved myself some embarrassment! I went to the fireworks store on Saturday and asked for fireworks that didn't make too much noise! The guy just looks at me and then another kid comes over. I tell him I'm looking for quiet fireworks. He sent me to the sparklers! What I meant was that I wanted the ones that go high and pop with pretty colors and falling sparks. Not fireworks that have lots of noise but very little pretty. Is that so hard?! I skipped the ones that said "whistler" or "screamer". Asa really, really liked my selections. And the other kids did too, mostly. Although it was a tough crowd and we had some boos! HA! We all really had a great time!!
And Asa ended the night with his first ever sleep over!!! My mom has stayed here with him several times but this time he stayed at her house while the rest of us camped out. She said he did great and she looks forward to making this a weekly ritual! LOL, kidding!! She has some of the kids nearly every weekend but this was Asa's first stay. I'm so glad he slept well and he took 2 cups of Pedisure for her, one before bed and one first thing in the morning! I've been having a hard time with the first morning cup and have resorted to the tube more often than not for this feeding! WTG, Asa!!!
So our July is off and running and won't be slowing down anytime soon! On Wednesday, a bunch of us are going to see TobyMac and Chris Tomlin in concert. Friday and Saturday, I'm attending a women's conference. It is local so I won't be going away overnight (that has it's pluses and minuses!!). The next week is our VBS. The next Friday is Asa's 24 hour EEG and Saturday is a family get together. The last Friday of the month Asa will graduate from Early Intervention with a little ceremony. That Saturday is the Mito meeting at Vandy. And then school starts back on Monday!!! I think that just leaves a few hours for sleeping the whole month! I guess it is good to stay busy, right!
He is so up and down with the noise issues lately that it is any ones guess how he'll react to a situation these days. For instance, Barry took Asa home during church on Sunday because a little girl was kinda loud and Asa was freaking out. She wasn't overly loud and it didn't bother the other little girl in there but Asa was upset! Barry tried taking Asa to another room but that didn't work so they came home. Makes me wonder about how school will go!
But then the fireworks! Wow, the fireworks!! We had ear covers for Asa to wear when we shot fireworks but I still thought he'd end up going home. I was helping get the next fireworks ready so Barry was holding Asa. He said at first Asa resisted the ear covers but then after they left them off for a second Asa realized how loud it was and didn't bother them again. He sat happily in Barry's lap while we shot fireworks and he laughed! Yes, my boy who startles and cries when someone gets ice in a glass, when I sneeze, when Cade shoots a Nerf gun...he LAUGHED at the fireworks! All the fireworks! Each time they went up, he giggled!!!
Man, if had known that would be his reaction, I could have saved myself some embarrassment! I went to the fireworks store on Saturday and asked for fireworks that didn't make too much noise! The guy just looks at me and then another kid comes over. I tell him I'm looking for quiet fireworks. He sent me to the sparklers! What I meant was that I wanted the ones that go high and pop with pretty colors and falling sparks. Not fireworks that have lots of noise but very little pretty. Is that so hard?! I skipped the ones that said "whistler" or "screamer". Asa really, really liked my selections. And the other kids did too, mostly. Although it was a tough crowd and we had some boos! HA! We all really had a great time!!
And Asa ended the night with his first ever sleep over!!! My mom has stayed here with him several times but this time he stayed at her house while the rest of us camped out. She said he did great and she looks forward to making this a weekly ritual! LOL, kidding!! She has some of the kids nearly every weekend but this was Asa's first stay. I'm so glad he slept well and he took 2 cups of Pedisure for her, one before bed and one first thing in the morning! I've been having a hard time with the first morning cup and have resorted to the tube more often than not for this feeding! WTG, Asa!!!
So our July is off and running and won't be slowing down anytime soon! On Wednesday, a bunch of us are going to see TobyMac and Chris Tomlin in concert. Friday and Saturday, I'm attending a women's conference. It is local so I won't be going away overnight (that has it's pluses and minuses!!). The next week is our VBS. The next Friday is Asa's 24 hour EEG and Saturday is a family get together. The last Friday of the month Asa will graduate from Early Intervention with a little ceremony. That Saturday is the Mito meeting at Vandy. And then school starts back on Monday!!! I think that just leaves a few hours for sleeping the whole month! I guess it is good to stay busy, right!
Thursday, July 1, 2010
Too tired to post...almost!
Today has been a looong day!!
Asa woke up at 5am and he did go back to sleep for several more hours but I stayed up. By noon I was wishing I had gone back to bed too!
Anna, Asa and I dropped Cade and Gracie off at school at 9am for their last day of Summer Bridging Academy. Today was just pizza and partying! I'm certain insane amounts of sugar was dosed out!!!
Anna, Asa and I headed on into town and made a couple of stops to shop for Anna new glasses. It has been 2 years since she had an exam and things were getting blurry for her. At 13, it seems the perfect glasses are hard to find! Remember we also shopped for new glasses last week!
At 10:45 Asa had PT. We have missed the last 2 PT sessions. Last week Asa was sick and the week before the PT was sick! I think Asa would have rather skipped today too! There is a little girl who has therapy at the same time as Asa. She is often rather amused by his squeals and complaints! Today Asa protested floor work quite loudly and Lauren thought he was funny! She was tickled at all his protesting. Asa was soon moved onto walking and was happier. He did a lot of walking today. I did a lot of silly dancing and slow motion running in order to keep him happy and moving!! I'm pretty sure there are hidden cameras in the building and a blooper reel of me "motivating" Asa!
At 11:30 Asa had feeding therapy. Feeding therapy in which he wouldn't try a bite! And again, I was doing my best motivation and still no bites! We are using the pump again to get him back on an eating routine! Since he was sick he started fasting again. If left on his own, he won't eat breakfast until 11:30 and his last meal of the day is at 5 or 6. So back to the pump while we try to get him back on a routine. On the plus side he has let me feed him cooked carrot slices this week and this morning he had nearly a whole mini muffin. I know it doesn't sound like much but it is!
After therapy, Anna and I grabbed lunch as we headed back out to school for the certificate presentation for summer school. The kids had 3 little songs that was really a treat. Sometimes these school performances can be draggy and long. This was NOT the case today! It was just really a treat! The kids all got a certificate for completing the classes and a toy. Cade picked a bag of candy! I think that sent his sugar levels on overload. He could not stay still all afternoon! And he was talking and talking and talking!! I can't imagine were he got that from!!!
We were back in town at 2:15 for Anna an eye appointment. By 3:15 we were back in an exam room!! See the above sugar comments!!! Seriously all the kids were good during such a long wait. Asa and I went back into the exam room with Anna. It was so much cooler in there and as he dimmed the lights to start the exam, Asa and I both relaxed! As the Dr. did the exam, "which is better 1 or 2, 3 or 4, 5 or6", Asa was mesmerized!! The monotonous tone, the click of the equipment, the dim room, the coolness....ahhhh!! I asked if I could have an audio recording of the exam so he would drift off to sleep better at night!
Thankfully Anna found a pair of glasses, she still qualified for the kid price on lenses and the glasses will be in next week! I'm so glad to get that chore done!! After all the glasses stuff, we went to get Asa's WIC Pedisure. The kids all moaned when I mentioned this chore. It does take a while but then I'm done for the month! I wish I could shop for a month of our groceries at a time!
At this point it was 4 and Cade was having an end of season party for the baseball team at 7pm. We live 30 minutes from town so that was an extra hour of drive time. At this point it seemed more reasonable to stay in town and run a few errands and go to the party. My body wanted to come home and take a nap but that would have been a lot more driving. Tonight I think that extra hour driving would have been worth it!!
We went to the mall to make 2 returns. Anna has been talking about getting her hair cut for a while and she mentioned it again today. So off we went!!! She was so nervous but she had it cut off!!! She really looks so much older!!! I'm not sure this is a good thing! :) She loves it and it is very stylish and cute!! She was grinning ear to ear!!
So by now it is 6pm. Asa has had no nap. I have had no nap. Cade has had too much sugar. And off we go to a pizza party! Asa finally napped on the way across town. Somehow that 10 minute nap didn't cut it! As soon as we got seated in the restaurant, he got sick! I started to leave but I realized I had already paid and I really, really needed that chocolate pizza!!! So I gobbled up some pizza and left Cade and Gracie with Barry, who had come to the party after work!
We finally got home at 8pm and Anna sat Asa in his high chair in the kitchen. I was in the living room and she went upstairs. Asa was alone in the kitchen and he was soooo happy!! He was so quiet just playing and I'm sure he was thrilled to be in the quiet all alone. I started to "rescue" him several times but he was so content I didn't bother him! I finally got him and changed his diaper and he snuggled in to rock. It didn't take but 5 minutes and he was so relaxed and ready for bed!!! Poor guy was exhausted!!!
Cade and Gracie's reward for attending summer school is a trip to the movies. Do you think Asa could handle a trip to see Toy Story 3? I'm still debating that one!!! Maybe we'll just stay home and have a PJ day! I loooove PJ days!!! We'll see if I can get away with that!!!
Can I go to bed now, please!!!
Asa woke up at 5am and he did go back to sleep for several more hours but I stayed up. By noon I was wishing I had gone back to bed too!
Anna, Asa and I dropped Cade and Gracie off at school at 9am for their last day of Summer Bridging Academy. Today was just pizza and partying! I'm certain insane amounts of sugar was dosed out!!!
Anna, Asa and I headed on into town and made a couple of stops to shop for Anna new glasses. It has been 2 years since she had an exam and things were getting blurry for her. At 13, it seems the perfect glasses are hard to find! Remember we also shopped for new glasses last week!
At 10:45 Asa had PT. We have missed the last 2 PT sessions. Last week Asa was sick and the week before the PT was sick! I think Asa would have rather skipped today too! There is a little girl who has therapy at the same time as Asa. She is often rather amused by his squeals and complaints! Today Asa protested floor work quite loudly and Lauren thought he was funny! She was tickled at all his protesting. Asa was soon moved onto walking and was happier. He did a lot of walking today. I did a lot of silly dancing and slow motion running in order to keep him happy and moving!! I'm pretty sure there are hidden cameras in the building and a blooper reel of me "motivating" Asa!
At 11:30 Asa had feeding therapy. Feeding therapy in which he wouldn't try a bite! And again, I was doing my best motivation and still no bites! We are using the pump again to get him back on an eating routine! Since he was sick he started fasting again. If left on his own, he won't eat breakfast until 11:30 and his last meal of the day is at 5 or 6. So back to the pump while we try to get him back on a routine. On the plus side he has let me feed him cooked carrot slices this week and this morning he had nearly a whole mini muffin. I know it doesn't sound like much but it is!
After therapy, Anna and I grabbed lunch as we headed back out to school for the certificate presentation for summer school. The kids had 3 little songs that was really a treat. Sometimes these school performances can be draggy and long. This was NOT the case today! It was just really a treat! The kids all got a certificate for completing the classes and a toy. Cade picked a bag of candy! I think that sent his sugar levels on overload. He could not stay still all afternoon! And he was talking and talking and talking!! I can't imagine were he got that from!!!
We were back in town at 2:15 for Anna an eye appointment. By 3:15 we were back in an exam room!! See the above sugar comments!!! Seriously all the kids were good during such a long wait. Asa and I went back into the exam room with Anna. It was so much cooler in there and as he dimmed the lights to start the exam, Asa and I both relaxed! As the Dr. did the exam, "which is better 1 or 2, 3 or 4, 5 or6", Asa was mesmerized!! The monotonous tone, the click of the equipment, the dim room, the coolness....ahhhh!! I asked if I could have an audio recording of the exam so he would drift off to sleep better at night!
Thankfully Anna found a pair of glasses, she still qualified for the kid price on lenses and the glasses will be in next week! I'm so glad to get that chore done!! After all the glasses stuff, we went to get Asa's WIC Pedisure. The kids all moaned when I mentioned this chore. It does take a while but then I'm done for the month! I wish I could shop for a month of our groceries at a time!
At this point it was 4 and Cade was having an end of season party for the baseball team at 7pm. We live 30 minutes from town so that was an extra hour of drive time. At this point it seemed more reasonable to stay in town and run a few errands and go to the party. My body wanted to come home and take a nap but that would have been a lot more driving. Tonight I think that extra hour driving would have been worth it!!
We went to the mall to make 2 returns. Anna has been talking about getting her hair cut for a while and she mentioned it again today. So off we went!!! She was so nervous but she had it cut off!!! She really looks so much older!!! I'm not sure this is a good thing! :) She loves it and it is very stylish and cute!! She was grinning ear to ear!!
So by now it is 6pm. Asa has had no nap. I have had no nap. Cade has had too much sugar. And off we go to a pizza party! Asa finally napped on the way across town. Somehow that 10 minute nap didn't cut it! As soon as we got seated in the restaurant, he got sick! I started to leave but I realized I had already paid and I really, really needed that chocolate pizza!!! So I gobbled up some pizza and left Cade and Gracie with Barry, who had come to the party after work!
We finally got home at 8pm and Anna sat Asa in his high chair in the kitchen. I was in the living room and she went upstairs. Asa was alone in the kitchen and he was soooo happy!! He was so quiet just playing and I'm sure he was thrilled to be in the quiet all alone. I started to "rescue" him several times but he was so content I didn't bother him! I finally got him and changed his diaper and he snuggled in to rock. It didn't take but 5 minutes and he was so relaxed and ready for bed!!! Poor guy was exhausted!!!
Cade and Gracie's reward for attending summer school is a trip to the movies. Do you think Asa could handle a trip to see Toy Story 3? I'm still debating that one!!! Maybe we'll just stay home and have a PJ day! I loooove PJ days!!! We'll see if I can get away with that!!!
Can I go to bed now, please!!!
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