Some days are just full of surprises! Around here that isn't usually a good thing! Surprises are usually stinky, smelly, sticky and all around yucky!
Some days though surprises are good and fun! Today was full of those surprises!
Asa woke up happy this morning. With my help he rolled over and slid out of bed, landing on his feet. He stayed standing and his upper body laying on the bed for a while and then he straightened up and stood just leaning against the bed. He seemed so strong!
After a diaper change, it was breakfast time. Sometimes a cup of Pedisure is too much to handle but this morning when I asked if he wanted some yogurt instead, he got all squeally and happy. Asa was so happy and talking and having the best time so I decided he should try to self feed the yogurt. He took 2 bites in between the bites I was giving him and I decided to get this happy morning on video! It isn't too often we get happy, chatty, eating mornings!
At noon Asa went to school and I commented about how "talkative" he was this morning and too bad it wasn't speech day!! His speech therapist did step in and we chatted. She said he did some great receptive language stuff yesterday.
I was not gonna bother with this detail but I will because some of you moms might have non talkers and need this tip. You know those pics from the PECS boards? Well Asa's teacher has some that are laminated and on popsicle sticks. Things like happy, sad, home, school, etc. Now Asa loves flags and sticks so this was right up his alley! After teaching him not to grab at all of them, it seems that he was pretty good at making the selection she was asking for. We use flash cards at home but he does seem to get bored with that so this idea is pretty fun and easy for us to make at home!
Anyway, when I picked Asa up at 2:30 I noticed the DME truck in the parking lot. When I got to the classroom, Asa was sitting with his teacher and the cutest, tiniest wheelchair was beside them!!! Asa had not been in it yet so I was so excited! Asa actually pulled out of the teachers lap and while holding my hands he walked all the way around the chair and back to his teacher. It was like he was checking it out!
Once the DME got the seatbelt on, we put Asa in and he took off!!! I was so happy and only thought to take out my camera when Asa's teacher commented that she didn't have her camera!!! I'm so glad I did get his first moments on video. I'm also bad about taking still pics when video would be better. And sadly I only use my cell phone to capture precious memories! But, I did get the video!!!
Asa was so excited! He pushed right away....I missed that part on the camera! And he made 2 big turns by himself to push over to the door. I can't imagine what he could do with open spaces!
Once we got home he pushed around the kitchen some but the carpet was kind hard and he was pretty tired. Gracie started pushing him around and he loved it!! The more he laughed the faster she went! Not dangerous, of course, but faster than he could do himself. We pretended that he knocked me down and he thought that was hilarious! Then he tried to roll over me!! I guess we shouldn't teach him to drive like that but he was having so much fun. We'll get to the rules of the road later!!
And just to be clear, this chair isn't ours. It is a loaner for us to trial, to be sure he can use it, likes it and we want to order it. I have to say that I think he likes it. We'll have to use it for a week or so to be sure it will be useful for him. I love it. It weights around 15 lbs, I'm guessing. It fits in the back of my van without breaking it down at all. It is growable. I'm not sure of the weight and height limits but Gracie sat in it and looked good. Cade looked pretty big in it! So if Asa can and will use it I'm ready to order! We may issues with the insurance. Asa got a Kimba adaptive stroller in May 2009. That's only 2 years ago. But at the time Asa was barely sitting up. It had to be pretty supportive. I can't believe that he can now sit up, scoot, walk with support and now push a wheelchair. I just pray the insurance will see how great his development is and how he needs to be cognitively and socially challenged by having his independence! If they don't then I may have a kidney for sale! Ha, just kidding but I did hear you get some decent money for plasma! ;-)
Wednesday, March 30, 2011
Blessings, Part 2!
I really thought I was done after last night. But God just keeps putting stuff in front of me that brings me back to this point. I also think that the title may be misleading or misunderstood at first glance. Maybe it should be "Sufferings?". Yes, with a question mark. Aren't some of our biggest blessings also our biggest suffering? Who are we to question what is a blessing and what is suffering?
I'm a member of a message board where a lot of parents have kids with special needs. A recent comment/question had to do with faith or a lack of faith. Is it bad to question God and wonder what He has in mind for your life? Does God show favoritism and heal some and take from others? If you don't get your prayers answered in the way you want, does it mean you are doing something wrong or not asking properly? So many questions and there is no simple answer.
And then we saw Dr. K and my focus shifted from how different Asa is from other "typical" kids to how much different Asa is from other mito kids. It could be said that we have been given a blessing by having Asa to be so healthy. I won't argue with that!!! But do I think that our family has done something to earn Asa's health? NO!! At one time we were on a parallel path with several other kids. In the last 2 years many of these kids have taken a different path from Asa. A path full of hospitalizations and procedures and interventions. So did our family say the right pray and so God granted us health? Were MY actions good enough to earn Asa's health? Did I "name it and claim it" for Asa's health? Or more in my character, was it my constant begging and nagging?
And finally, our church bullentin had some of my favorite verses on the cover Sunday. It was a selected passage from Job.
So let me give you a few lessons I've learned from God's word and His actions in my life. The first verse is at the bottom of this blog, Jeremiah 29:11. I find comfort and stregth in the fact that God has a plan for me. And it is not a plan to harm me but a plan of hope and of a future. "Future" means ongoing, not ending in me! And I've shared my feelings on this verse in detail before so I won't waste your time going over it all again.
But just because I have accepted that God has a plan doesn't mean it is easy peasy now! But I do know that God is with me and leading me along His path. All I have to do is follow along and not get distracted with what is going on around me! And just like Moses said in Exodus 33:15, if God's presence doesn't go with me, then I don't want to go! And when Moses questions how he will know if God is really with him, God shows him! God places Moses in the crevice of a mountain. He goes before the crevice, announces Himself as Yahweh, covers Moses' face to protect him from the full glory of God and then uncovers Moses' face so that Moses can see His back and know He was there!! Can you imagine being Moses!!! I have not seen God's face but I know for certain that I have seen His handiwork! Not as it has happened, most of the time, but only after a time of reflection. What glory would I get if I was just able to see God work! Instead I'm usually busy with my work and not looking for God's work.
And finally there is my reflection of Job. I love the book of Job! On one hand, I just want to shake my head and feel pity for poor ole Job. But on the other hand, I look at Job and think what a blessed guy he was! I'll sum it up if you haven't heard it before. God removed His protection from Job despite (or because of!) the fact that Job was "a man of perfect integrity, who fears God and turns away from evil". Satan could take anything from Job except his life. And boy did Satan do just that!! He took his livestock, his family, his wealth and servants, and even affected Job's health nearly to the point of death. I find it funny though that Satan didn't remove Job's "friends" from him! Once all is taken from him, Job starts to question and justify himself to God. My favorite part of the book is chapter 38. I love it when God brings on the holy smackdown....that's my words, not Job's! God asks were you there when I established the earth (verse 4), or closed the sea in (verse 8), or commanded the morning (verse12), or sent out the lighting bolts (verse 35)! Now really can Job or any of us argue with that!! Job responds in Job 42:2, "I know that You can do anything and no plan of Yours can be thwarted"! And that leads me back to Jeremiah 29:11 and God's plan for me.
Why should I question the plan? And even futher, how dare I question the plan? And I don't say that lightly! Of course I do question and wonder but in the end I recall and study the passages I've given you here. I hope that maybe you can relate and use these verses and lessons too.
And one other point, I've found that since I've had struggles I've grown in faith. Before Asa I would say I had faith that God could move my mountains. Looking back all I had in front of me was a grain of sand. Even now I feel I only have mole hills but I've seen God move them so yes, I do think he can move true mountains!! Be wary of someone who tells you that you don't have enough faith or XYZ would be removed from your life! My thinking is they've never had an XYZ in their lives!!
So blessings or struggles? I say blessings! What about you?!
I'm a member of a message board where a lot of parents have kids with special needs. A recent comment/question had to do with faith or a lack of faith. Is it bad to question God and wonder what He has in mind for your life? Does God show favoritism and heal some and take from others? If you don't get your prayers answered in the way you want, does it mean you are doing something wrong or not asking properly? So many questions and there is no simple answer.
And then we saw Dr. K and my focus shifted from how different Asa is from other "typical" kids to how much different Asa is from other mito kids. It could be said that we have been given a blessing by having Asa to be so healthy. I won't argue with that!!! But do I think that our family has done something to earn Asa's health? NO!! At one time we were on a parallel path with several other kids. In the last 2 years many of these kids have taken a different path from Asa. A path full of hospitalizations and procedures and interventions. So did our family say the right pray and so God granted us health? Were MY actions good enough to earn Asa's health? Did I "name it and claim it" for Asa's health? Or more in my character, was it my constant begging and nagging?
And finally, our church bullentin had some of my favorite verses on the cover Sunday. It was a selected passage from Job.
So let me give you a few lessons I've learned from God's word and His actions in my life. The first verse is at the bottom of this blog, Jeremiah 29:11. I find comfort and stregth in the fact that God has a plan for me. And it is not a plan to harm me but a plan of hope and of a future. "Future" means ongoing, not ending in me! And I've shared my feelings on this verse in detail before so I won't waste your time going over it all again.
But just because I have accepted that God has a plan doesn't mean it is easy peasy now! But I do know that God is with me and leading me along His path. All I have to do is follow along and not get distracted with what is going on around me! And just like Moses said in Exodus 33:15, if God's presence doesn't go with me, then I don't want to go! And when Moses questions how he will know if God is really with him, God shows him! God places Moses in the crevice of a mountain. He goes before the crevice, announces Himself as Yahweh, covers Moses' face to protect him from the full glory of God and then uncovers Moses' face so that Moses can see His back and know He was there!! Can you imagine being Moses!!! I have not seen God's face but I know for certain that I have seen His handiwork! Not as it has happened, most of the time, but only after a time of reflection. What glory would I get if I was just able to see God work! Instead I'm usually busy with my work and not looking for God's work.
And finally there is my reflection of Job. I love the book of Job! On one hand, I just want to shake my head and feel pity for poor ole Job. But on the other hand, I look at Job and think what a blessed guy he was! I'll sum it up if you haven't heard it before. God removed His protection from Job despite (or because of!) the fact that Job was "a man of perfect integrity, who fears God and turns away from evil". Satan could take anything from Job except his life. And boy did Satan do just that!! He took his livestock, his family, his wealth and servants, and even affected Job's health nearly to the point of death. I find it funny though that Satan didn't remove Job's "friends" from him! Once all is taken from him, Job starts to question and justify himself to God. My favorite part of the book is chapter 38. I love it when God brings on the holy smackdown....that's my words, not Job's! God asks were you there when I established the earth (verse 4), or closed the sea in (verse 8), or commanded the morning (verse12), or sent out the lighting bolts (verse 35)! Now really can Job or any of us argue with that!! Job responds in Job 42:2, "I know that You can do anything and no plan of Yours can be thwarted"! And that leads me back to Jeremiah 29:11 and God's plan for me.
Why should I question the plan? And even futher, how dare I question the plan? And I don't say that lightly! Of course I do question and wonder but in the end I recall and study the passages I've given you here. I hope that maybe you can relate and use these verses and lessons too.
And one other point, I've found that since I've had struggles I've grown in faith. Before Asa I would say I had faith that God could move my mountains. Looking back all I had in front of me was a grain of sand. Even now I feel I only have mole hills but I've seen God move them so yes, I do think he can move true mountains!! Be wary of someone who tells you that you don't have enough faith or XYZ would be removed from your life! My thinking is they've never had an XYZ in their lives!!
So blessings or struggles? I say blessings! What about you?!
Monday, March 28, 2011
Blessings
I haven't been able to get this song off my mind for a few days now. I think each time we have a big doctors appointment I really start to think again. It's like most days are just our normal and I don't have anything else to compare it to. Then we have an appointment and we start getting the questions again. Not that I mind the questions at all. I love questions. I love to raise awareness and spread the word about mito. I can and will talk to anyone who seems interested....just ask my family! But it also brings a realization that we are different. Our blessings aren't the blessings of others.
I can't complain about our trials with mito. We are blessed that Asa has been so healthy for so long. There are no huge issues to be dealt with at these doctors appointments. He is following his own path for sure! For these things I'm beyond thankful! But if we wake up in the morning and Asa is miraculously healed then you won't hear me complain either!
This song helps remind me that my plan is not the best plan. Things won't go the way I want them to go but the struggles and disappointments have also brought so many blessings. I've learned more in the last 3 years than I did my first 30 years. God has opened my eyes to blessing and His hand in so many ways that I could not even begin to list them. God has taken every one of my weaknesses and made me stronger. He has pulled and stretched me but instead of breaking I've gained a stronger faith that I'm not alone or out of control.
"We know that pain reminds this heart
That this is not, this is not our home
It's not our home"
I think these lyrics are my favorite of the whole song. While I'd love to have the "normal" that this world offers, I love even more the struggles of now for the "normal" of Heaven later! In fact I think the struggles make me long for Jesus even more. When I hear of the disasters happening more and more and all the signs of the end times, my first response is "yes, Lord, let it come"! Is that crazy to wish for tribulation and trials? Not when you know how the book ends!!! And I have assurance that I will overcome and be victorious!
I have even more peace since last week Cade announced that he gave his life to Christ. He has told us this many times before but he would never confess it before our church. And yes, he did this while Barry and I were 650 miles away in Houston. But again, God's timing not mine! In any case I can rest assured that my family will all be rejoicing at the feet of Jesus when the time comes. So why worry and stress about the rough times now when our eternity is gonna be so awesome!!! Yes, Lord, let it come!
Saturday, March 26, 2011
Mito What 5K
It was a dark and stormy morning.....
That is NOT the way you want to begin the long awaited day of a huge 5K! And don't even get me started on the fact that is was now 40 degrees with a windchill in the upper 30's! But still, we got everyone up and headed to Millington for the 2nd Annual Jackson Culley Mito What? 5K at 6am!! We drove down the interstate in wind and rain while praying for clear skies for race time!
We got to Millington, picked up our registration packs, unloaded a canopy to keep us dry and waited for the race. During all of this the rain had turned from a full rain to light drizzle and then stopped by race time!!! At 9am, there was NO rain! It didn't pick back up again until the last of the runners were coming into the end zone!!! Praise God!! It wasn't exactly 70 and sunny but it was warmer and dry! Thank you Jesus!
Now, I had been wavering between doing the 1 mile fun run/walk or the 5K. I finally decided on the 5k but then the trip to Houston completely knocked me out of any running and training. Mostly I just sat in a van or in the waiting room the first part of the week. I still kept my goal though and was just gonna walk the 5K. As we started out though the kids were wanting to run so off we went. We all ran and walked for a while. Then the kids kinda dropped off and I really wanted to see how well I could do if I tried. So after the first mile I ditched the kids and took off! I finished the 5K with a time of 41 minutes! I'd really like to think that I could have done better if I'd started out really trying. In reality I probably would have only shaved off a few seconds! Still I'm pretty proud that I finished at all!! And I should add that the track was well marked, lined by volunteers and police escorts and Cade and Gracie were with my 19 and 14 year old nephews. I didn't totally ditch them in the middle of nowhere!
The best part of the day was seeing all the people who turned out for mito. There was over 350 signed up before the race and 50 who signed up this morning in the cold, wind and rain!! And the last total I heard was $17,000!! $17,000 was raised and sent to the UMDF for mito research! Can you believe that!!! I can't imagine how much work it must take to organize such a hugely successful race! All that is because of Cindy Kraft and Angie Hayes! The story of how these awesome ladies found Jackson Culley and mito is amazing. And these ladies work their hineys off to raise money for a cure for a disease that they had never even heard of 2 years ago. It isn't everyday you meet people who give so much and ask for nothing in return! Thank you so much Angie and Cindy.....and their amazing friends and family who help out and make everything run so smoothly!
I love to see my mito friends and today I met a new family. They are from Millington and lost their daughter to mito (specifically Leigh's) in 1987 when she was 6 1/2. In 1987 there were only 50 known cases of Leigh's in the world, according to the dad. Can you imagine?! They didn't even know what was wrong with Jessica or what took her life until a year after she passed away. And we think mito is unheard of now. I can't imagine trying to find answers and doctors when there were so few documented cases. It really makes me feel like I'm making a difference by raising awareness for mito. I hope this family is proud that we are working so hard to help spread the word about mito so maybe no other kids have to be taken by a disease with no name!
Thanks to all those who sponsored me in my quest to be a Mito Hero! And thanks to our family and friends who turned out in such yuck to walk/run with us!! Can you believe I didn't even take a single picture?! Oh, well there's always next year!
That is NOT the way you want to begin the long awaited day of a huge 5K! And don't even get me started on the fact that is was now 40 degrees with a windchill in the upper 30's! But still, we got everyone up and headed to Millington for the 2nd Annual Jackson Culley Mito What? 5K at 6am!! We drove down the interstate in wind and rain while praying for clear skies for race time!
We got to Millington, picked up our registration packs, unloaded a canopy to keep us dry and waited for the race. During all of this the rain had turned from a full rain to light drizzle and then stopped by race time!!! At 9am, there was NO rain! It didn't pick back up again until the last of the runners were coming into the end zone!!! Praise God!! It wasn't exactly 70 and sunny but it was warmer and dry! Thank you Jesus!
Now, I had been wavering between doing the 1 mile fun run/walk or the 5K. I finally decided on the 5k but then the trip to Houston completely knocked me out of any running and training. Mostly I just sat in a van or in the waiting room the first part of the week. I still kept my goal though and was just gonna walk the 5K. As we started out though the kids were wanting to run so off we went. We all ran and walked for a while. Then the kids kinda dropped off and I really wanted to see how well I could do if I tried. So after the first mile I ditched the kids and took off! I finished the 5K with a time of 41 minutes! I'd really like to think that I could have done better if I'd started out really trying. In reality I probably would have only shaved off a few seconds! Still I'm pretty proud that I finished at all!! And I should add that the track was well marked, lined by volunteers and police escorts and Cade and Gracie were with my 19 and 14 year old nephews. I didn't totally ditch them in the middle of nowhere!
The best part of the day was seeing all the people who turned out for mito. There was over 350 signed up before the race and 50 who signed up this morning in the cold, wind and rain!! And the last total I heard was $17,000!! $17,000 was raised and sent to the UMDF for mito research! Can you believe that!!! I can't imagine how much work it must take to organize such a hugely successful race! All that is because of Cindy Kraft and Angie Hayes! The story of how these awesome ladies found Jackson Culley and mito is amazing. And these ladies work their hineys off to raise money for a cure for a disease that they had never even heard of 2 years ago. It isn't everyday you meet people who give so much and ask for nothing in return! Thank you so much Angie and Cindy.....and their amazing friends and family who help out and make everything run so smoothly!
I love to see my mito friends and today I met a new family. They are from Millington and lost their daughter to mito (specifically Leigh's) in 1987 when she was 6 1/2. In 1987 there were only 50 known cases of Leigh's in the world, according to the dad. Can you imagine?! They didn't even know what was wrong with Jessica or what took her life until a year after she passed away. And we think mito is unheard of now. I can't imagine trying to find answers and doctors when there were so few documented cases. It really makes me feel like I'm making a difference by raising awareness for mito. I hope this family is proud that we are working so hard to help spread the word about mito so maybe no other kids have to be taken by a disease with no name!
Thanks to all those who sponsored me in my quest to be a Mito Hero! And thanks to our family and friends who turned out in such yuck to walk/run with us!! Can you believe I didn't even take a single picture?! Oh, well there's always next year!
Tuesday, March 22, 2011
Houston Day 3
Whew, I knew today would be a long day but I didn't realize just how long!
I had a massive post ready, hit post and it disappeared!!! I can not do it all again!
Dr. K was awesome as usual! We need to follow up with the eye doc at Vandy because something weird is going on. She ordered bloodwork. We can come back in a year.
Dr. P was fun. While I don't feel we have a ton of issues I guess if you start looking at the allergy stuff it adds up. She ordered lots of bloodwork. So much bloodwork that the lab tech couldn't do it all at once. We will have Dr. K's done at home.
We rode the train around the park between appts. Despite the pics Asa really like it!
Asa took a nap before we saw Dr. P. This is when Gracie lost her iPod! There is tons of funny conversations to go with that story! She told Barry, "Daddy, that happened in the past, this is now. If something happens a few minutes ago, it is the past. I guess I've just been to school longer than you"!!! Whew girl!! Don't worry she is still alive but only because Barry is busy looking for the extra set of van keys that he lost!
We will get up super early in the morning and head home! Please pray for safe and uneventful travel! Ok, time to pack!
I had a massive post ready, hit post and it disappeared!!! I can not do it all again!
Dr. K was awesome as usual! We need to follow up with the eye doc at Vandy because something weird is going on. She ordered bloodwork. We can come back in a year.
Dr. P was fun. While I don't feel we have a ton of issues I guess if you start looking at the allergy stuff it adds up. She ordered lots of bloodwork. So much bloodwork that the lab tech couldn't do it all at once. We will have Dr. K's done at home.
We rode the train around the park between appts. Despite the pics Asa really like it!
Asa took a nap before we saw Dr. P. This is when Gracie lost her iPod! There is tons of funny conversations to go with that story! She told Barry, "Daddy, that happened in the past, this is now. If something happens a few minutes ago, it is the past. I guess I've just been to school longer than you"!!! Whew girl!! Don't worry she is still alive but only because Barry is busy looking for the extra set of van keys that he lost!
We will get up super early in the morning and head home! Please pray for safe and uneventful travel! Ok, time to pack!
Monday, March 21, 2011
Houston Day 2
At 5:50am Barry woke me up and asked me what time I was getting up. I answered 6am. Then Asa started crying so we began the day early!!
Our GI appt was at 9:30. We took the hotel shuttle at 8:30. We got to the clinic early but I'd rather be early than late any day! Unfortunately the doc was running late!! At 10:30 he had still not come into the room. By the time the action started up Asa was back in the stroller. They did the whole exam with him in the stroller and he didn't shed a tear!!!! Dr. Rhoads even sat up on the exam table and Asa just stared at him! Asa didn't know what to think about that!!
He really didn't have much new info to offer. He talked about adding more Reglan. We may try that. And that's about it. I'm not sure how I feel about that. I'm not sure what I was expecting.
When we left the clinic I called for the shuttle. It was gonna be 20 minutes so we (I) decided we could walk back in that time. It was a nice day and we could see the city if we walked. What I didn't realize is that I underestimated the distance to the hotel!!! It was 2 miles!!! We walked down the side walk of a busy city street, in the wind for 2 miles and Asa didn't get sick at all! He loved it! We got back to the hotel and wanted to rest a little while but he kept crying and signing "go"! So we changed into shorts and headed back out to the zoo. This time we drove! We tried to find a McD's or CFA for a hour but came up empty so when we got to the zoo at 2, we were starving!!! And yes, we paid $30 for 3 burgers and fries! Crazy but we were desperate!! Since it is the only food we've bought all day, I guess it averages out!
The zoo was great! It must be frog mating season and Gracie enjoyed the snake house way too much!!! She was so excited about all the animals and just bounced from place to place! She'd say "come on Asa, let's go look over here" just like he could really follow her around. She left her ipod in the van so I had to use my phone to take her pics. Now I've got tons of blurry animal pics I need to send to her! I gave the mating frogs their privacy though!
Asa did so great at the zoo. Again, there was lots of noise and the wind but Asa never fussed. Not even a whimper and he didn't have a paci the whole time!! Before we left Barry and Gracie got an ice cream cone and Asa and I split a snow cone. It must have given Asa a brain freeze because he squished up his eyes and put his fist to his forehead. When I asked if it hurt his head, he'd grunt and put his fist back to his face! It was so funny! I tried to video but it isn't good.
I was so impressed that Asa handled all this stimulation so well. I even noticed and was thankful that he was laughing in the elevators when those used to make him so sick! But, as we left the zoo, for no reason at all, he started with an episode! UGH! I drained him as we drove back to the hotel.
Tomorrow we see Dr. K at 9am and Dr. P at 1:30. I had hoped to buy tickets for the train that goes around the park so we could ride between visits but you can't buy them for the day ahead. And the ticket stand is on the opposite side of the park from the hospital. Sooooo, do you think I can convince the family to walk across the park, buy train tickets and ride back to the hospital?! After today, I doubt it!
I'll spare you the pics of the zoo. Trust me a camera phone doesn't capture the magic of animals sleeping at the zoo!
Our GI appt was at 9:30. We took the hotel shuttle at 8:30. We got to the clinic early but I'd rather be early than late any day! Unfortunately the doc was running late!! At 10:30 he had still not come into the room. By the time the action started up Asa was back in the stroller. They did the whole exam with him in the stroller and he didn't shed a tear!!!! Dr. Rhoads even sat up on the exam table and Asa just stared at him! Asa didn't know what to think about that!!
He really didn't have much new info to offer. He talked about adding more Reglan. We may try that. And that's about it. I'm not sure how I feel about that. I'm not sure what I was expecting.
When we left the clinic I called for the shuttle. It was gonna be 20 minutes so we (I) decided we could walk back in that time. It was a nice day and we could see the city if we walked. What I didn't realize is that I underestimated the distance to the hotel!!! It was 2 miles!!! We walked down the side walk of a busy city street, in the wind for 2 miles and Asa didn't get sick at all! He loved it! We got back to the hotel and wanted to rest a little while but he kept crying and signing "go"! So we changed into shorts and headed back out to the zoo. This time we drove! We tried to find a McD's or CFA for a hour but came up empty so when we got to the zoo at 2, we were starving!!! And yes, we paid $30 for 3 burgers and fries! Crazy but we were desperate!! Since it is the only food we've bought all day, I guess it averages out!
The zoo was great! It must be frog mating season and Gracie enjoyed the snake house way too much!!! She was so excited about all the animals and just bounced from place to place! She'd say "come on Asa, let's go look over here" just like he could really follow her around. She left her ipod in the van so I had to use my phone to take her pics. Now I've got tons of blurry animal pics I need to send to her! I gave the mating frogs their privacy though!
Asa did so great at the zoo. Again, there was lots of noise and the wind but Asa never fussed. Not even a whimper and he didn't have a paci the whole time!! Before we left Barry and Gracie got an ice cream cone and Asa and I split a snow cone. It must have given Asa a brain freeze because he squished up his eyes and put his fist to his forehead. When I asked if it hurt his head, he'd grunt and put his fist back to his face! It was so funny! I tried to video but it isn't good.
I was so impressed that Asa handled all this stimulation so well. I even noticed and was thankful that he was laughing in the elevators when those used to make him so sick! But, as we left the zoo, for no reason at all, he started with an episode! UGH! I drained him as we drove back to the hotel.
Tomorrow we see Dr. K at 9am and Dr. P at 1:30. I had hoped to buy tickets for the train that goes around the park so we could ride between visits but you can't buy them for the day ahead. And the ticket stand is on the opposite side of the park from the hospital. Sooooo, do you think I can convince the family to walk across the park, buy train tickets and ride back to the hospital?! After today, I doubt it!
I'll spare you the pics of the zoo. Trust me a camera phone doesn't capture the magic of animals sleeping at the zoo!
Sunday, March 20, 2011
Houston Day 1
We headed out for Houston at 4am this morning! This is the first trip we've planned to drive all the way on one day! 11 hours, that's how long our drive was supposed to be and Barry was worried that if things didn't go smoothly we'd end up getting to Houston at midnight!
The plan was for Gracie to sleep in Asa's room with him last night and then we'd just stick them both in the van, still half asleep and head out. I got up at 3am and by 3:15 Gracie popped out of Asa's room and said "Me and Asa are ready to go!". WHAT?! She was up and ready to go but Asa did stay asleep until the last minute. Neither went back to sleep right away in the van though.
Gracie finally settled in for a nap. She looks pretty cozy if you ask me! Asa had taken a nap earlier to I was happy they both had a little catch up sleep.
Asa had diarrhea for the first part of the trip. We had to stop and change his diaper 4 or 5 times! At the last diaper stop he got freaked out by all the big trucks going by and he started getting sick. Instead of him puking all over the carseat I hooked up a drain bag. Thankfully this kept the puke from coming and it also zonked him out! This is after he woke up and was playing with the extension tube. We'd given him a sucker to try to keep him happy. It didn't keep him from getting sick but he would not let go of it! When he woke up he would put the sucker in his mouth and then the tube! It was so funny!
As soon as we got settled into the hotel Gracie turned on the TV and Asa snatched up the remote!
We ordered pizza delivered to the room (something that never happens in the country!) and watched The Blind Side on TV. While we ate Barry picked up his Dr. Pepper bottle and Asa signed "more" and pointed to the Dr. Pepper! Barry tried to give Asa his juice but signed "more" and pointed to Barry's bottle! Yep, he got a little watered down Dr. Pepper in his cup!
In the morning we will see Dr. Rhoads a GI that Dr. Koenig recommended. We'll have tomorrow afternoon free since another doc had to cancel on us. We are thinking a trip to the zoo may be in order. Tuesday will be busy with a morning visit to Dr. K, the mito doc and then immunology in the afternoon. I think we are all ready to crash tonight!
Friday, March 18, 2011
Is it Spring Break yet?!
The weather has been wonderful here this week. Lots of 70 degree weather and sunshine! The trees are blooming and buttercups are everywhere! This kind of weather could really spoil a girl!! Asa loves it too! He doesn't want to come in the house when we come in from school. He wants to stay outside and play! Who can blame him!
One day we got out of the van and I started helping him walk. For some reason he got freaked out and started getting sick. He wanted to be held but not be held. He wanted to walk but couldn't handle walking. He was just a fussing, puking mess! We tried his Power Wheel car but that didn't work either. I tried to swing him but that didn't work either. I finally put him in the jogging stroller that was on the porch. He settled right in and pointed in the direction he wanted to go! So funny, he knew he didn't want to go inside, he didn't want to just sit, he was too tired and sick to play. So he rode, I pushed, he puked some and then he felt better! Now he was ready to play. He played in the swing, he slid down the slide and he played in the clubhouse up high! I have pics but when I rechecked them, there was a little puke on his shirt so I'll spare you from that! You're welcome!
Today was another exciting day and our village grew by 300+ people! As an awareness and fundraising project I asked our local elementary school to sponsor a "Dress Down for Mito" day. If the kids donated $1 to the UMDF then they could dress out of their uniform and wear jeans! I have to say that I love our school! All my kids have gone there and you won't find better teachers who really love their kids!! So with some apprehension I asked our principal if we could have this dress down day. I was relived when she whole heartily agreed! So we set the date for today, the Friday before spring break. The school also arranged a concert with an anti-bullying theme. So Barry, Asa and I were at the school bright and early. A couple of the teachers introduced Asa to their class and then we were introduced before the concert. The concert was great but it was loud and Asa didn't get into that! He handled way more noise than I thought he would though! But anyway, I'm getting distracted! By the end of the concert they had the total for the "Dress Down" day.....$360!!!! Can you believe that!! That's more money than students! So cool! And I had the opportunity to talk to several groups of kids as they left the assembly. One little boy asked how mito affected Asa and when I told him that Asa's muscles were tired and weak and he couldn't walk or talk, the little boy said "Wow, if I'd known that I would have given you my whole check, like $114 dollars!". How sweet is that! I feel so blessed to be part of such a wonderful community. We are a rural area and a small school but with they sure do have the biggest hearts!
Before the assembly started Asa had the best time! I helped him walk all over the gym. There are number spots on the floor so the kids know where to line up and Asa walked over and walked all the way down the number line, even under the roped off section for the concert sales!! It was easy for him to go under the rope, not so easy for me! He kept going to the padded part of the wall under the basketball goal. Finally I stood him against it and he just stood there laughing and playing and slapping his hands! I did get a great pic of him! I hate the full length one is so blurry! After all this excitement it was a tough day of school for him! I think he took a nap, they drained his belly and was still pretty crabby! Bless Asa's teachers hearts!! Bless ALL the teachers hearts! That's OK, spring break starts now! :)
One day we got out of the van and I started helping him walk. For some reason he got freaked out and started getting sick. He wanted to be held but not be held. He wanted to walk but couldn't handle walking. He was just a fussing, puking mess! We tried his Power Wheel car but that didn't work either. I tried to swing him but that didn't work either. I finally put him in the jogging stroller that was on the porch. He settled right in and pointed in the direction he wanted to go! So funny, he knew he didn't want to go inside, he didn't want to just sit, he was too tired and sick to play. So he rode, I pushed, he puked some and then he felt better! Now he was ready to play. He played in the swing, he slid down the slide and he played in the clubhouse up high! I have pics but when I rechecked them, there was a little puke on his shirt so I'll spare you from that! You're welcome!
Today was another exciting day and our village grew by 300+ people! As an awareness and fundraising project I asked our local elementary school to sponsor a "Dress Down for Mito" day. If the kids donated $1 to the UMDF then they could dress out of their uniform and wear jeans! I have to say that I love our school! All my kids have gone there and you won't find better teachers who really love their kids!! So with some apprehension I asked our principal if we could have this dress down day. I was relived when she whole heartily agreed! So we set the date for today, the Friday before spring break. The school also arranged a concert with an anti-bullying theme. So Barry, Asa and I were at the school bright and early. A couple of the teachers introduced Asa to their class and then we were introduced before the concert. The concert was great but it was loud and Asa didn't get into that! He handled way more noise than I thought he would though! But anyway, I'm getting distracted! By the end of the concert they had the total for the "Dress Down" day.....$360!!!! Can you believe that!! That's more money than students! So cool! And I had the opportunity to talk to several groups of kids as they left the assembly. One little boy asked how mito affected Asa and when I told him that Asa's muscles were tired and weak and he couldn't walk or talk, the little boy said "Wow, if I'd known that I would have given you my whole check, like $114 dollars!". How sweet is that! I feel so blessed to be part of such a wonderful community. We are a rural area and a small school but with they sure do have the biggest hearts!
Before the assembly started Asa had the best time! I helped him walk all over the gym. There are number spots on the floor so the kids know where to line up and Asa walked over and walked all the way down the number line, even under the roped off section for the concert sales!! It was easy for him to go under the rope, not so easy for me! He kept going to the padded part of the wall under the basketball goal. Finally I stood him against it and he just stood there laughing and playing and slapping his hands! I did get a great pic of him! I hate the full length one is so blurry! After all this excitement it was a tough day of school for him! I think he took a nap, they drained his belly and was still pretty crabby! Bless Asa's teachers hearts!! Bless ALL the teachers hearts! That's OK, spring break starts now! :)
Thursday, March 17, 2011
Distractions
I'm only blogging as a way to procastinate getting ready for our Houston trip in 2 days!!! How's that for motivation! I've got medical records, test results, insurance forms, directions and ALL my questions to gather for our trip. I know where most of the needed info is but I need to get it all together. And don't even mention the packing of clothes, foods, meds and stuff! Yep, I better get busy.....tomorrow!
This has been a busy week just as I predicted! Asa got a haircut today. This is usually a very dramatic even!! I was ready for much of the same today. Instead it went really well. Of course, he did cry and squirm and want away but not more than any other kid I don't think. Oh, and he kept pushing the super sweet and speedy stylest. It still took the stylest, me and the other stylest to get the job done. Again, it was not near as bad as usual! Maybe the Zoloft is helping really him!
When I picked Asa up from school on Wednesday, his PT stopped and chatted. We've been going back and forth about getting a manual wheelchair vs a walker for Asa. On one hand he CAN walk with support but he gets so tired and he only likes the support of feeling your hands on him! I'm not sure a walker would help out too much. It would still be a ton of work for him and that takes some of the fun out of it. I think it'd be like us sprinting everywhere we go instead of just walking. That sure doesn't sound fun to me!
A wheelchair on the other hand would let Asa have some freedom to move and explore without having to do so much work. He would be comfy and supported and hopefully enjoy playing on his own. Maybe that would end some of his frustrations. But.....having a chair doesn't mean we'd give up on him walking!!! He'll still have PT and I'll still hunch over and walk him as much as I can but when I give out, he'll have a way to go on his own. Sooooo, yep, we are starting the process of getting Asa a wheelchair. It's a mixed bag of emotions for sure.
We got home from school yesterday and the weather was so wonderful. I knew Asa would want to be outside. We got out of the van and he took off walking with my help. It was only a second later and something freaked him out! I have no idea what happened but he got soooo sick. He was gagging, drooling, spitting up yucky stuff. He wanted up and then down but couldn't stand or walk. Anna got his Power Wheel but he didn't want that either. I tried swinging him and playing on the playground but he was still sick and unconsolable. He wouldn't let me come in or put him down. Finally I put him in the jogging stroller and he settled right in and pointed to the front yard!! He continued to sit and watch from the stroller. He was still gagging and spitting up but he was happy at least. I still don't know what was happening but I was just glad to be able to settle him after 30 minutes!!
I'm sure I had more to say but now my eyes are closing in a hint to go to bed!!! I'm sure I'll need a good distraction tomorrow though!
This has been a busy week just as I predicted! Asa got a haircut today. This is usually a very dramatic even!! I was ready for much of the same today. Instead it went really well. Of course, he did cry and squirm and want away but not more than any other kid I don't think. Oh, and he kept pushing the super sweet and speedy stylest. It still took the stylest, me and the other stylest to get the job done. Again, it was not near as bad as usual! Maybe the Zoloft is helping really him!
When I picked Asa up from school on Wednesday, his PT stopped and chatted. We've been going back and forth about getting a manual wheelchair vs a walker for Asa. On one hand he CAN walk with support but he gets so tired and he only likes the support of feeling your hands on him! I'm not sure a walker would help out too much. It would still be a ton of work for him and that takes some of the fun out of it. I think it'd be like us sprinting everywhere we go instead of just walking. That sure doesn't sound fun to me!
A wheelchair on the other hand would let Asa have some freedom to move and explore without having to do so much work. He would be comfy and supported and hopefully enjoy playing on his own. Maybe that would end some of his frustrations. But.....having a chair doesn't mean we'd give up on him walking!!! He'll still have PT and I'll still hunch over and walk him as much as I can but when I give out, he'll have a way to go on his own. Sooooo, yep, we are starting the process of getting Asa a wheelchair. It's a mixed bag of emotions for sure.
We got home from school yesterday and the weather was so wonderful. I knew Asa would want to be outside. We got out of the van and he took off walking with my help. It was only a second later and something freaked him out! I have no idea what happened but he got soooo sick. He was gagging, drooling, spitting up yucky stuff. He wanted up and then down but couldn't stand or walk. Anna got his Power Wheel but he didn't want that either. I tried swinging him and playing on the playground but he was still sick and unconsolable. He wouldn't let me come in or put him down. Finally I put him in the jogging stroller and he settled right in and pointed to the front yard!! He continued to sit and watch from the stroller. He was still gagging and spitting up but he was happy at least. I still don't know what was happening but I was just glad to be able to settle him after 30 minutes!!
I'm sure I had more to say but now my eyes are closing in a hint to go to bed!!! I'm sure I'll need a good distraction tomorrow though!
Saturday, March 12, 2011
Our Village
There is very little that I'd agree with Hillary Clinton on, in fact, this statement may be the only thing, but I could not agree more with her statement that it takes a village to raise kids!! And having a special needs kids REALLY takes a village! And my village was busy this weekend!!
Barry, Anna and I went out of town this weekend with our church youth group. Every year there is a big weekend of worship and learning and serving our God. I went as a teen but it is different going as an adult! I know many of the kids do appreciate the message but sometimes it seems like such a slow process! If they'd just listen to us wise adults then they could save themselves a lot of trouble!
This year it wouldn't have been possible for all three of us to go if our family didn't have an awesome village surrounding us!! We really needed Barry to go as a van driver and Barry wouldn't want to go without me. Anna however didn't want either of us to go.....but really she didn't care, she just couldn't admit it! LOL! But if all of us left, then who would take care of the 3 little ones? Who would run Cade to his first baseball practices of the season? Who would help with Gracie and her first softball practice of the year? That's where our village comes in!!
On active duty this weekend was my mom and dad. Moma didn't work on Friday so she could be here and keep Asa on since we left before noon. She took my directions on Asa's feeding and med schedule. She got Cade and Gracie off the bus and did all the cooking, cleaning and washing for the weekend. I know most all grandmothers babysit for their grand kids but I wouldn't normally ask Moma to keep the 3 smaller ones at one time! And let's face it, Asa is more difficult than most kids! Just keeping him can be a chore not to mention Gracie and Cade with their squabbles, feedings, messes and schedules! What a blessing to have my parents right next door!! Thank you Moma and Daddy for keeping them all this weekend!
And then there was Cade's first baseball practices of the season. He had practice on Friday and Saturday. Since Asa is usually less than fond of the ball field, it can complicate things like ball practices and games! I am hopeful that Asa will have more fun at the ball field this year since his sensory issues have mellowed out some! What I trade off in sensory stuff may be made up for in Asa's new "go" attitude! Still, I didn't want to have to test my theory with my mom! That's when my village expanded to Robin!! She has twin boys the same age as Cade and the boys have been in school and on ball teams together since Kindergarten! Her hubby happens to be the boys ball coach but this doesn't mean it was easy to add Cade to her schedule. Her dear hubby was working so not only was she playing single mom to her boys and little girl Jude, she gladly added Cade to her schedule for both practices! And not that a 10 year old boy is all that much trouble but some days just another person can throw the balance off! I hope that didn't happen this weekend! :)
I'll tell you another thing about Robin..... Her boys have a birthday right before Cade. When Asa was 4 months old and in the hospital for 7 days, it was the week before Cade's 7th birthday! We got home on a Friday evening and had a party the next day. The way I recall things, Robin had a skating party scheduled and let us bum onto her boy's party! They shared school friends and we both invited some family and had separate cakes but without her help who knows what kind of birthday Cade would have had! I know she'll love me tooting her horn about all of this but sometimes horns need to be tooted!!! Thank you Robin for being such a kind and caring friend!
And then that just left Gracie! She really wasn't all that thrilled that I signed her up for softball anyway, but then we were going to miss her first practice too. I was afraid she'd be mad and really not want to play! Shockingly, Gracie can be a little rotten and dramatic (must get that from her daddy)! Our neighbor and friend, Christi, was going to take her to practice but Gracie decided that she wanted Dee Dee to take her....insert the rotten here! Soooo, my mom took Asa and Gracie to practice! When Asa wasn't having such a great time and my mom took him home, Christi brought Gracie home! Again, hopefully my girl wasn't any trouble but I just hate to intrude on other folks schedules. Thank you Christi for taking care of Gracie at practice and bringing her home! Both the kids have really awesome families on their teams!!
We are so blessed to have great friends and family! And these are only the handful of villagers who help out in our village! Our village is full of people who will pick kids up, drop kids off, take charge of things, babysit anytime, etc! This just happened to be a busy, crazy weekend! But the point is that we are surrounded by people who make these times less crazy and busy. I honestly had no worries that the kids would be happy and taken care of while we were gone! And if you think that I'm a bit dramatic to make such a big deal out of a 2 day trip then you don't realize that I'm a control freak who wants to know the who, what, how and when of every day! I like to have a well defined plan, not just run off for a trip while my kids are scattered and shuttled around. But with such a great village I know that I'm covered, the kids are great and everyone can have fun!
So thank you to our village, those on duty this weekend, those on duty for our Houston trip in 2 weeks and those who are standing ready! It takes a village and ours is top of the line!!!
Barry, Anna and I went out of town this weekend with our church youth group. Every year there is a big weekend of worship and learning and serving our God. I went as a teen but it is different going as an adult! I know many of the kids do appreciate the message but sometimes it seems like such a slow process! If they'd just listen to us wise adults then they could save themselves a lot of trouble!
This year it wouldn't have been possible for all three of us to go if our family didn't have an awesome village surrounding us!! We really needed Barry to go as a van driver and Barry wouldn't want to go without me. Anna however didn't want either of us to go.....but really she didn't care, she just couldn't admit it! LOL! But if all of us left, then who would take care of the 3 little ones? Who would run Cade to his first baseball practices of the season? Who would help with Gracie and her first softball practice of the year? That's where our village comes in!!
On active duty this weekend was my mom and dad. Moma didn't work on Friday so she could be here and keep Asa on since we left before noon. She took my directions on Asa's feeding and med schedule. She got Cade and Gracie off the bus and did all the cooking, cleaning and washing for the weekend. I know most all grandmothers babysit for their grand kids but I wouldn't normally ask Moma to keep the 3 smaller ones at one time! And let's face it, Asa is more difficult than most kids! Just keeping him can be a chore not to mention Gracie and Cade with their squabbles, feedings, messes and schedules! What a blessing to have my parents right next door!! Thank you Moma and Daddy for keeping them all this weekend!
And then there was Cade's first baseball practices of the season. He had practice on Friday and Saturday. Since Asa is usually less than fond of the ball field, it can complicate things like ball practices and games! I am hopeful that Asa will have more fun at the ball field this year since his sensory issues have mellowed out some! What I trade off in sensory stuff may be made up for in Asa's new "go" attitude! Still, I didn't want to have to test my theory with my mom! That's when my village expanded to Robin!! She has twin boys the same age as Cade and the boys have been in school and on ball teams together since Kindergarten! Her hubby happens to be the boys ball coach but this doesn't mean it was easy to add Cade to her schedule. Her dear hubby was working so not only was she playing single mom to her boys and little girl Jude, she gladly added Cade to her schedule for both practices! And not that a 10 year old boy is all that much trouble but some days just another person can throw the balance off! I hope that didn't happen this weekend! :)
I'll tell you another thing about Robin..... Her boys have a birthday right before Cade. When Asa was 4 months old and in the hospital for 7 days, it was the week before Cade's 7th birthday! We got home on a Friday evening and had a party the next day. The way I recall things, Robin had a skating party scheduled and let us bum onto her boy's party! They shared school friends and we both invited some family and had separate cakes but without her help who knows what kind of birthday Cade would have had! I know she'll love me tooting her horn about all of this but sometimes horns need to be tooted!!! Thank you Robin for being such a kind and caring friend!
And then that just left Gracie! She really wasn't all that thrilled that I signed her up for softball anyway, but then we were going to miss her first practice too. I was afraid she'd be mad and really not want to play! Shockingly, Gracie can be a little rotten and dramatic (must get that from her daddy)! Our neighbor and friend, Christi, was going to take her to practice but Gracie decided that she wanted Dee Dee to take her....insert the rotten here! Soooo, my mom took Asa and Gracie to practice! When Asa wasn't having such a great time and my mom took him home, Christi brought Gracie home! Again, hopefully my girl wasn't any trouble but I just hate to intrude on other folks schedules. Thank you Christi for taking care of Gracie at practice and bringing her home! Both the kids have really awesome families on their teams!!
We are so blessed to have great friends and family! And these are only the handful of villagers who help out in our village! Our village is full of people who will pick kids up, drop kids off, take charge of things, babysit anytime, etc! This just happened to be a busy, crazy weekend! But the point is that we are surrounded by people who make these times less crazy and busy. I honestly had no worries that the kids would be happy and taken care of while we were gone! And if you think that I'm a bit dramatic to make such a big deal out of a 2 day trip then you don't realize that I'm a control freak who wants to know the who, what, how and when of every day! I like to have a well defined plan, not just run off for a trip while my kids are scattered and shuttled around. But with such a great village I know that I'm covered, the kids are great and everyone can have fun!
So thank you to our village, those on duty this weekend, those on duty for our Houston trip in 2 weeks and those who are standing ready! It takes a village and ours is top of the line!!!
Wednesday, March 9, 2011
A beautiful sight!
From the time Asa was a little baby, I've had the same prayer for him as I've rocked him to sleep at night. I've prayed every night that when we get up in the morning, things will be back to normal and this last 3 years will have been a bad dream. This prayer seemed possible when Asa was just a few weeks or months old. You'd think by this point I'd realize that this "bad dream" scenario isn't going to happen! Even as I've let a lot of dreams and hopes go, I've still held onto a few dreams that if I was honest, I really didn't think would happen. Things like Asa being a walker or hearing him say "Moma". And it isn't that I'm depressed at the thought of him not walking or talking because of all the issues that he could have, these are very mild. Sure they are frustrating, tiring and disappointing but not tragic in any way!
But, still, as crazy as it seems, when I lay down with Asa and my mind wanders. I find myself praying that when I get up in the morning this whole journey will be a bad dream and I'll wake up to a happy, laughing boy sitting up in bed, calling for me to get him out. I've never given up on that dream of normalcy even as we have worked so hard for each and every milestone Asa has met. A few times when Asa was still in his crib, I'd hear him banging and go into his room expecting to see him sitting up and rocking the crib. You know how babies do when they hold onto the crib rail and shake the crib so that is crashes and bangs. But I'd go into his room and he was only kicking the crib rail. Big kicks but still, not sitting and shaking. Not strong and normal.
Now that Asa is in his big bed he bangs and kicks the wall. That's how he wakes up in the morning! And this morning was no different. He was kicking and banging the wall but happy. I usually let him kick and play until he cries and is ready to get up. This morning it was after 9:00 though so I went to his room. When I opened his door I saw him sitting up on the bed and he'd gotten a toy bucket from the shelf at the end of his bed and was playing with toys!! I stood there in shock for a second! Asa has never sat up on his own unless during therapy or with us helping him and prompting him. Yet, there he was sitting up in bed!! And he had wrestled a box of toys from the shelf and was just playing! It was really a dream come true!
Who knows what tomorrow will hold! Asa may wake up and decide to get out of bed on his own and come scooting into the living room! Wouldn't that be amazing! He got out of the recliner on his own yesterday so there is really no telling! Such an awesome little guy!!!
God has been so good to us and given us health and happiness. And now He is blessing us with milestones too! It is almost too much for me to think about. God's timing is perfect!
Oh and I've got to tell you this funny! There is an Energy For Life Walkathon in Nashville on April 2nd. Since my family and friends are sick of me hitting them up for donations, I decided to hit the kids elementary school up! I asked if we could have a "Dress Down for Mito" Friday. The kids donate $1 to Team Asa and the UMDF and they can wear jeans instead of the dress code. The principal agreed (eagerly, I might add! I love our school!) and I sent a letter of introduction to each teacher. Tomorrow I'll pass out reminders for the kids. Anyway, Cade said his teacher talked about mito and the big "dress down" today. When I asked exactly what was said he was telling me and said she didn't exactly say mitochondrial disease correctly but "she did pretty good for a beginner"!!! Hahahahaha!!! He was so serious too! And yes, my 10 and 7 year old can pronounce mitochondrial disease better than even many doctors!!! The doctors do pretty good though......for beginners!
But, still, as crazy as it seems, when I lay down with Asa and my mind wanders. I find myself praying that when I get up in the morning this whole journey will be a bad dream and I'll wake up to a happy, laughing boy sitting up in bed, calling for me to get him out. I've never given up on that dream of normalcy even as we have worked so hard for each and every milestone Asa has met. A few times when Asa was still in his crib, I'd hear him banging and go into his room expecting to see him sitting up and rocking the crib. You know how babies do when they hold onto the crib rail and shake the crib so that is crashes and bangs. But I'd go into his room and he was only kicking the crib rail. Big kicks but still, not sitting and shaking. Not strong and normal.
Now that Asa is in his big bed he bangs and kicks the wall. That's how he wakes up in the morning! And this morning was no different. He was kicking and banging the wall but happy. I usually let him kick and play until he cries and is ready to get up. This morning it was after 9:00 though so I went to his room. When I opened his door I saw him sitting up on the bed and he'd gotten a toy bucket from the shelf at the end of his bed and was playing with toys!! I stood there in shock for a second! Asa has never sat up on his own unless during therapy or with us helping him and prompting him. Yet, there he was sitting up in bed!! And he had wrestled a box of toys from the shelf and was just playing! It was really a dream come true!
Who knows what tomorrow will hold! Asa may wake up and decide to get out of bed on his own and come scooting into the living room! Wouldn't that be amazing! He got out of the recliner on his own yesterday so there is really no telling! Such an awesome little guy!!!
God has been so good to us and given us health and happiness. And now He is blessing us with milestones too! It is almost too much for me to think about. God's timing is perfect!
Oh and I've got to tell you this funny! There is an Energy For Life Walkathon in Nashville on April 2nd. Since my family and friends are sick of me hitting them up for donations, I decided to hit the kids elementary school up! I asked if we could have a "Dress Down for Mito" Friday. The kids donate $1 to Team Asa and the UMDF and they can wear jeans instead of the dress code. The principal agreed (eagerly, I might add! I love our school!) and I sent a letter of introduction to each teacher. Tomorrow I'll pass out reminders for the kids. Anyway, Cade said his teacher talked about mito and the big "dress down" today. When I asked exactly what was said he was telling me and said she didn't exactly say mitochondrial disease correctly but "she did pretty good for a beginner"!!! Hahahahaha!!! He was so serious too! And yes, my 10 and 7 year old can pronounce mitochondrial disease better than even many doctors!!! The doctors do pretty good though......for beginners!
Monday, March 7, 2011
Randomness
We are getting ready for the Mito-What? 5K! It turns out that running outside is much harder than running on the treadmill! And we live near hills! Who knew!! Anna and I tried to do 3.1 miles today but we got a later start and had to get back before Cade and Gracie got off the bus. We did 2.94 miles in......43 minutes! We are slow! I guess we still have 2 weeks to get faster. If I'm that slow I'm just doing the 1 mile! At last check there was 270 people registered but there is still room for you if you want to come!! Or sign up as a runner and just be a virtual runner. The money goes to the UMDF no matter if you show up or not!!!
And I got all the sponsors I needed to be a Mito Hero!! I'm working on a little something for my sweet sponsors but well, I'm slow and easily distracted! Still, my goal is to be finished before the race! In the meantime, thank you all so much!
This time in 2 weeks, we'll be Houston! I finally got the EMU recording and report from Asa's EEG that was done in July 2010. I wanted Dr. K to see a whole "episode" from start to finish. You can clearly see that Asa is upset and it is noted in the report but I wish it had sound and a better view of Asa's face. Oh, well.
We also got a letter in the mail yesterday saying that one of the Drs. we wanted to see is going to be out of town. This was the neuro who specializes in autism. I'm really not sure what she was supposed help us do but now we won't see her. I did get some names of psychologist here who may be helpful. I'm just really confused if we need to go this route. Maybe he is just a high maintance kid and spoiled rotten. Or maybe he does have some behavior and mental issues that need to be addressed. I flip from one theory to the other hourly!
Speaking of his behavior.....this morning I spent the day picking him up, putting him down, letting him walk around holding my hands, putting him in chairs, taking him out of chairs, round and round, over and over! I finally gave up and just stopped. Can you guess what happened next?! Yep, screaming and screaming! I can tell he is frustrated that he can't get around on his own. I'm sure that's not all the problem but it is a big part. I finally put the seat back in his gait trainer and he was able to walk around but then sit down when he got tired. This was better. I also brought in a little car and he rode around on it for a minute. The whole time I was cooking supper though, he scooted around me trying his best to sit on my feet! It is soooo good to be soooo loved!
Oh and also while I was cooking supper and Asa was trying to sit on my feet and climb my legs, the insurance company called. They wanted to remind me that they cover well child visits and their records indicated that Asa was past due for a check up! HAHAHAHA! The guy was nice and I let him do his speech, then I assured him Asa was up to date on his check ups and then some! He told me I could go to their website if I needed help with any other issues we were having! Oh, if only it was that simple!!! He did remind me that I need to follow up with our case worker to be sure things are in place for the Houston trip.
And I got all the sponsors I needed to be a Mito Hero!! I'm working on a little something for my sweet sponsors but well, I'm slow and easily distracted! Still, my goal is to be finished before the race! In the meantime, thank you all so much!
This time in 2 weeks, we'll be Houston! I finally got the EMU recording and report from Asa's EEG that was done in July 2010. I wanted Dr. K to see a whole "episode" from start to finish. You can clearly see that Asa is upset and it is noted in the report but I wish it had sound and a better view of Asa's face. Oh, well.
We also got a letter in the mail yesterday saying that one of the Drs. we wanted to see is going to be out of town. This was the neuro who specializes in autism. I'm really not sure what she was supposed help us do but now we won't see her. I did get some names of psychologist here who may be helpful. I'm just really confused if we need to go this route. Maybe he is just a high maintance kid and spoiled rotten. Or maybe he does have some behavior and mental issues that need to be addressed. I flip from one theory to the other hourly!
Speaking of his behavior.....this morning I spent the day picking him up, putting him down, letting him walk around holding my hands, putting him in chairs, taking him out of chairs, round and round, over and over! I finally gave up and just stopped. Can you guess what happened next?! Yep, screaming and screaming! I can tell he is frustrated that he can't get around on his own. I'm sure that's not all the problem but it is a big part. I finally put the seat back in his gait trainer and he was able to walk around but then sit down when he got tired. This was better. I also brought in a little car and he rode around on it for a minute. The whole time I was cooking supper though, he scooted around me trying his best to sit on my feet! It is soooo good to be soooo loved!
Oh and also while I was cooking supper and Asa was trying to sit on my feet and climb my legs, the insurance company called. They wanted to remind me that they cover well child visits and their records indicated that Asa was past due for a check up! HAHAHAHA! The guy was nice and I let him do his speech, then I assured him Asa was up to date on his check ups and then some! He told me I could go to their website if I needed help with any other issues we were having! Oh, if only it was that simple!!! He did remind me that I need to follow up with our case worker to be sure things are in place for the Houston trip.
Saturday, March 5, 2011
Just a "normal" Saturday
Today we decided to do what tons of other families do on Saturdays. We got up and got dressed and headed to town for some shopping and eating. Cade had birthday money to spend and there was errands we needed to take care of. So off we went.
Asa was screaming and gagging when we left but I hoped that he just needed to get out of the house. Most of the time he can tell when we are getting ready to leave and he starts screaming like he is gonna get left. Unfortunately, all the crying made him sick an he ended up puking all over himself and the carseat before we even got to our first stop! Barry was ready to just turn around and come home but I said I had extra clothes so they could go spend Cade's gift card while I changed Asa. The only problem was that I used the spare pants another time and all I had was a spare shirt. So they all got back in the car, we went across the street and I went in alone to buy Asa pants, which by the way were all replaced with shorts and t-shirts so I had to dig through the clearance! Anyway, I got back to the van and Barry said he'd pooped and gotten it on his socks! Thankfully I had spare socks! So now Asa was decked out in his spare sock (too little), spare shirt (slightly stained) and new pants (too big but if I'm gonna pay $2.30 for pants they are gonna last next year too!). Off we go for Cade's shopping spree part 2!
We headed to Best Buy where I told Barry and the other kids to get lost so I could try the iPad and the Proloquo2go AAC app with Asa! Seriously the highlight of my day....or so I thought at the time! This is a communication app and Best Buy has a trial version on the iPad you can play with at the store. So I tried it out with Asa and he liked to hit the little pencil in the bottom corner that sent it into the "edit" mode, over and over and over! Picture me slapping my forehead! At some point him to push "please" and after he heard the word, he signed it! So cute!!! A salesperson came up and started talking to us. I helped Asa say "hi" and "good morning". The salesman left! hehehe! Overall Asa just liked tapping away. He would wave when I helped him tap "bye bye" so he really gets it but he'd need lots of help with it! I'm keeping my eyes out for a great deal on an iPad. And I mean a reeeaaally good deal! Like a marked down, refurbished one! I'm in no hurry though, maybe by the time iPad3 comes out I'll find my deal!
After Best Buy we went out for pizza. Barry sat beside the ice machine. Does that need further explanation?! I'm kidding, he picked the best available table and the ice machine wasn't too back but Asa would just and cry out when someone got ice. It didn't matter much though because there was a birthday party of 10 year old girls. Does that need further explanation?! Let's just Asa's squeal sounded a lot like those girls squeals! As we were leaving Barry put Asa in one of those coin operated cars. Asa sat and spun the steering wheel. For some crazy reason I decided to put in the coins and make it go. Maybe I was thinking we had met our mess quota for the day so he wouldn't get sick, I don't know but I put the money in! And Asa loved it!!! He was laughing and happy. It was so funny!! I'm trying to load the video now but don't hold your breath!
It is our pizza adventure that turned out to be the highlight of my day! When we pulled in I took a handicap place. Asa has a handicap placard. It was cool, windy, raining and since he was already super sensitive we parked and Barry ran in with Asa while the rest of us unloaded. When we pulled in there was a GMC Yukon parked in the lined space beside the handicap parking space. Now since we don't use a lift this was not a huge deal for us. Rude, sure but not a huge deal. But when the same truck was still sitting there after we came out of the pizza place, an hour later, and he was still there I was grumbling and mad. There is a movie theater nearby and we thought he'd parked and walked to the movies. That mad me ill. As I walked around my van I noticed he had a personalized licence plate that said "4 God"! Really!!! Now I was very mad! Sooooo, I got a UMDF flyer that I keep in the van, wrote a nice little note on it pointing out his illegal parking, placed the note in a empty bag that the Farrell bags come in and left it all under his wiper!!! I'm usually the last person to stir up trouble but I was mad he had parked there for so long and then more angry when I saw the plate! Since the movie was letting out, we parked in another spot to see if the driver was coming out of the theater. By this time our kids were thinking Barry and I were crazy and Asa had eaten 2 Dum Dum suckers but Barry and I were waiting! Surprise to us when a man came out of the tanning salon in front of his truck, took the note off his truck, went into the nail salon next door, came out, went back to his truck and then back into the nail salon. I'm assuming it was the owner of the nail salon and tanning bed! Can you even imagine pulling up and parking in a space reserved for the handicap, smack dab in front of your business!!! Stupid!! We drove back through the parking lot on our way home and the truck was moved down a space or two. And I get that Asa's issues are pretty mild so I wasn't angry for myself for my friends who have to use a lift van or get a wheel chair right up to the vehicle. It is tough for me to get Asa out of our van and he is only 32 lbs and 3 years old. I do use those handicap spaces to make it easier for me so I don't have to carry him. I'm gonna be carrying him for a loooong time and my back already hurts! I can't imagine how some of my friends do it with bigger and older kids! So I felt like I took some power back by educating this dumbo on real disabilities and proper parking etiquette!
And it ended on a very high note! Cade had more bday money and wanted a BB gun. Gracie and Cade have both asked for one for a while but they haven't saved enough money. Today Cade got one and Gracie was very sad that she didn't have any money to get one. Her bday isn't until April so she still had quite a wait! Cade saw her so sad and told Barry that he wanted to buy one for her!!! He and Barry slipped away and bought it. When they came back Gracie asked why they had 2 guns. Cade told it was hers and she started hopping up and down and clapping. She even gave him a hug!!!! She is NOT a hugger but she was for him!! The second they got home they tried them out. Barry showed them what to do and he aimed and hit a flag pole we have in the yard. Cade took his gun aimed and hit the pole on his second shot. Gracie hit it my her 3rd or 4th! They spent the next 30 minutes outside hitting target cans and only came in because it was getting dark and we made them!!!
Even with all Asa's puke, poop and screaming, we had a great family day. It was just a "normal" family day for us!
Asa was screaming and gagging when we left but I hoped that he just needed to get out of the house. Most of the time he can tell when we are getting ready to leave and he starts screaming like he is gonna get left. Unfortunately, all the crying made him sick an he ended up puking all over himself and the carseat before we even got to our first stop! Barry was ready to just turn around and come home but I said I had extra clothes so they could go spend Cade's gift card while I changed Asa. The only problem was that I used the spare pants another time and all I had was a spare shirt. So they all got back in the car, we went across the street and I went in alone to buy Asa pants, which by the way were all replaced with shorts and t-shirts so I had to dig through the clearance! Anyway, I got back to the van and Barry said he'd pooped and gotten it on his socks! Thankfully I had spare socks! So now Asa was decked out in his spare sock (too little), spare shirt (slightly stained) and new pants (too big but if I'm gonna pay $2.30 for pants they are gonna last next year too!). Off we go for Cade's shopping spree part 2!
We headed to Best Buy where I told Barry and the other kids to get lost so I could try the iPad and the Proloquo2go AAC app with Asa! Seriously the highlight of my day....or so I thought at the time! This is a communication app and Best Buy has a trial version on the iPad you can play with at the store. So I tried it out with Asa and he liked to hit the little pencil in the bottom corner that sent it into the "edit" mode, over and over and over! Picture me slapping my forehead! At some point him to push "please" and after he heard the word, he signed it! So cute!!! A salesperson came up and started talking to us. I helped Asa say "hi" and "good morning". The salesman left! hehehe! Overall Asa just liked tapping away. He would wave when I helped him tap "bye bye" so he really gets it but he'd need lots of help with it! I'm keeping my eyes out for a great deal on an iPad. And I mean a reeeaaally good deal! Like a marked down, refurbished one! I'm in no hurry though, maybe by the time iPad3 comes out I'll find my deal!
After Best Buy we went out for pizza. Barry sat beside the ice machine. Does that need further explanation?! I'm kidding, he picked the best available table and the ice machine wasn't too back but Asa would just and cry out when someone got ice. It didn't matter much though because there was a birthday party of 10 year old girls. Does that need further explanation?! Let's just Asa's squeal sounded a lot like those girls squeals! As we were leaving Barry put Asa in one of those coin operated cars. Asa sat and spun the steering wheel. For some crazy reason I decided to put in the coins and make it go. Maybe I was thinking we had met our mess quota for the day so he wouldn't get sick, I don't know but I put the money in! And Asa loved it!!! He was laughing and happy. It was so funny!! I'm trying to load the video now but don't hold your breath!
It is our pizza adventure that turned out to be the highlight of my day! When we pulled in I took a handicap place. Asa has a handicap placard. It was cool, windy, raining and since he was already super sensitive we parked and Barry ran in with Asa while the rest of us unloaded. When we pulled in there was a GMC Yukon parked in the lined space beside the handicap parking space. Now since we don't use a lift this was not a huge deal for us. Rude, sure but not a huge deal. But when the same truck was still sitting there after we came out of the pizza place, an hour later, and he was still there I was grumbling and mad. There is a movie theater nearby and we thought he'd parked and walked to the movies. That mad me ill. As I walked around my van I noticed he had a personalized licence plate that said "4 God"! Really!!! Now I was very mad! Sooooo, I got a UMDF flyer that I keep in the van, wrote a nice little note on it pointing out his illegal parking, placed the note in a empty bag that the Farrell bags come in and left it all under his wiper!!! I'm usually the last person to stir up trouble but I was mad he had parked there for so long and then more angry when I saw the plate! Since the movie was letting out, we parked in another spot to see if the driver was coming out of the theater. By this time our kids were thinking Barry and I were crazy and Asa had eaten 2 Dum Dum suckers but Barry and I were waiting! Surprise to us when a man came out of the tanning salon in front of his truck, took the note off his truck, went into the nail salon next door, came out, went back to his truck and then back into the nail salon. I'm assuming it was the owner of the nail salon and tanning bed! Can you even imagine pulling up and parking in a space reserved for the handicap, smack dab in front of your business!!! Stupid!! We drove back through the parking lot on our way home and the truck was moved down a space or two. And I get that Asa's issues are pretty mild so I wasn't angry for myself for my friends who have to use a lift van or get a wheel chair right up to the vehicle. It is tough for me to get Asa out of our van and he is only 32 lbs and 3 years old. I do use those handicap spaces to make it easier for me so I don't have to carry him. I'm gonna be carrying him for a loooong time and my back already hurts! I can't imagine how some of my friends do it with bigger and older kids! So I felt like I took some power back by educating this dumbo on real disabilities and proper parking etiquette!
And it ended on a very high note! Cade had more bday money and wanted a BB gun. Gracie and Cade have both asked for one for a while but they haven't saved enough money. Today Cade got one and Gracie was very sad that she didn't have any money to get one. Her bday isn't until April so she still had quite a wait! Cade saw her so sad and told Barry that he wanted to buy one for her!!! He and Barry slipped away and bought it. When they came back Gracie asked why they had 2 guns. Cade told it was hers and she started hopping up and down and clapping. She even gave him a hug!!!! She is NOT a hugger but she was for him!! The second they got home they tried them out. Barry showed them what to do and he aimed and hit a flag pole we have in the yard. Cade took his gun aimed and hit the pole on his second shot. Gracie hit it my her 3rd or 4th! They spent the next 30 minutes outside hitting target cans and only came in because it was getting dark and we made them!!!
Even with all Asa's puke, poop and screaming, we had a great family day. It was just a "normal" family day for us!
Friday, March 4, 2011
Another first for Asa.....
Another first! Today I had some errands to run after I picked Asa up from school. I realized that I forgot to take an extra can of Pedisure with us! Now, of course I could have bought a 6 pack of Pedisure for $10 but we have cases and cases at home and I kept thinking of all the other stuff I could do with $10. So I made a decision.....I would give Asa real food instead of a Pedisure cup!
I know that he eats lots of real foods but he has never had to rely on real food. I'm happy if he tastes and plays with real food. But I don't think he takes in enough calories from just food. But today we were gonna see. After school we went by McDonald's and I ordered food just for Asa, well I got a coffee for myself! I ordered Asa a yogurt and a cheeseburger. Asa gobbled the yogurt up and ate the cheese and bun from the burger. He can't chew too well so I only gave him a taste of the burger (I hear you cheering that I didn't give him the meat, Christine!). I thought it was pretty funny that he is nearly 3 1/2 and we've never ordered food for him at a restaurant!! After the grocery store he had an applesauce pouch so I don't think I had to worry about the calories! He never did eat his 3rd cup of Pedisure today. When we got home he got sick so he went to bed at 7pm after I tubed his meds. I just hope he doesn't wake up at 5am tomorrow!!
I've had to keep a feeding journal this week for the GI at Vandy. The first day I was tickled that he ate so much real food. It was a Monday and a day we don't have any appts or plans. On Tuesday he did ok but he couldn't eat in the morning. By Wednesday he was so gaggy in the morning that he couldn't even eat his breakfast Pedisure until after 10am. He ususally has this at 8am. He continued this gagging the next 2 days too. I wonder if he is having sinus drainage issues and is choked up in the morning. He just gags and gags and covers his mouth. I hate to see him stuggle with whatever it is but in the past he hasn't had the ability to gag without puking so this is progress believe it or not.
On a terriblely sad note, the mito community lost another little fighter yesterday. I've mentioned Cooper Knight on here before, asking prayer for him when he had a transplant last year. Sadly, the transplant didn't go as well as everyone hoped but Cooper held his own and he was back home in time for the holidays. In January, he went on his Make a Wish trip to Disney with his family. In February, he had another surgery and just didn't bounce back at all. He got very, very sick but would seem to be ralling back before he was knocked down again. Each time he kept fighting and his family kept fighting. Last week his family and doctors decided that Cooper's little body was too weak to keep recovering and it would play out long before his strong will and fight. Last week Cooper came home from the hospital to be with his family for as long as he could. According to his mom's blog and FB, they enjoyed every second they had together. He even managed a stroll around the neighborhood in his Power Wheels and have wars with his brothers using marshmellow guns! And even though his body couldn't fight anymore, he continued to fight. Sadly, he could no longer fight and last night he passed on to the loving arms of Jesus.
I know it is awful to think of kids dying and many of you may have no idea who Cooper is (or any of the other kids I've mentioned) but they have an amazing story to tell. Even as little kids they have more fight and love and life in them than many grown people I know. How can such little people teach us adults so much?! And the parents, siblings, cousins, grandparents and friends that love these little mito warriors are warriors themselves. Where many of us would curl up into a ball, these families share the struggles and joys of their little ones. They have faith when I'm not sure I could. They remain hopeful when everyone else has given up hope. These are the type of people I've become "friends" with over the last 3 years. I'm so proud to have gotten to know all these families and my heart breaks when I hear of another loss in our "community". Heaven has too many of our mito kids!
I guess that's why I share our story and their stories. To raise awareness of a fairly unknown disease that is taking away amazing kids. I wish we could cure mito but that seems unlikely to happen tomorrow. What will happen tomorrow though, is that mito will be attacking kids, harming them...many of them permently...and yet most people have never heard of mito. It is a silent killer! If it is going to steal away these brave souls then it should have a name and everyone, EVERYONE, should hate it! Not just a small community! I could go on and tell you all the reasons mito could affect your family. Things like diabetes, Alzheimers, Parkinsons and some cancers. And all these and more are true but tonight the reason to hate mito is for Cooper Knight......his mom Sarah, dad Kevin, big sister Caroline and big brothers Oliver and Adam! That's why I hate mito tonight!
Cooper's service is Tuesday at 10am. His favorite color is orange. I'll be wearing orange and thinking of Cooper even from miles, hours and states away!
I know that he eats lots of real foods but he has never had to rely on real food. I'm happy if he tastes and plays with real food. But I don't think he takes in enough calories from just food. But today we were gonna see. After school we went by McDonald's and I ordered food just for Asa, well I got a coffee for myself! I ordered Asa a yogurt and a cheeseburger. Asa gobbled the yogurt up and ate the cheese and bun from the burger. He can't chew too well so I only gave him a taste of the burger (I hear you cheering that I didn't give him the meat, Christine!). I thought it was pretty funny that he is nearly 3 1/2 and we've never ordered food for him at a restaurant!! After the grocery store he had an applesauce pouch so I don't think I had to worry about the calories! He never did eat his 3rd cup of Pedisure today. When we got home he got sick so he went to bed at 7pm after I tubed his meds. I just hope he doesn't wake up at 5am tomorrow!!
I've had to keep a feeding journal this week for the GI at Vandy. The first day I was tickled that he ate so much real food. It was a Monday and a day we don't have any appts or plans. On Tuesday he did ok but he couldn't eat in the morning. By Wednesday he was so gaggy in the morning that he couldn't even eat his breakfast Pedisure until after 10am. He ususally has this at 8am. He continued this gagging the next 2 days too. I wonder if he is having sinus drainage issues and is choked up in the morning. He just gags and gags and covers his mouth. I hate to see him stuggle with whatever it is but in the past he hasn't had the ability to gag without puking so this is progress believe it or not.
On a terriblely sad note, the mito community lost another little fighter yesterday. I've mentioned Cooper Knight on here before, asking prayer for him when he had a transplant last year. Sadly, the transplant didn't go as well as everyone hoped but Cooper held his own and he was back home in time for the holidays. In January, he went on his Make a Wish trip to Disney with his family. In February, he had another surgery and just didn't bounce back at all. He got very, very sick but would seem to be ralling back before he was knocked down again. Each time he kept fighting and his family kept fighting. Last week his family and doctors decided that Cooper's little body was too weak to keep recovering and it would play out long before his strong will and fight. Last week Cooper came home from the hospital to be with his family for as long as he could. According to his mom's blog and FB, they enjoyed every second they had together. He even managed a stroll around the neighborhood in his Power Wheels and have wars with his brothers using marshmellow guns! And even though his body couldn't fight anymore, he continued to fight. Sadly, he could no longer fight and last night he passed on to the loving arms of Jesus.
I know it is awful to think of kids dying and many of you may have no idea who Cooper is (or any of the other kids I've mentioned) but they have an amazing story to tell. Even as little kids they have more fight and love and life in them than many grown people I know. How can such little people teach us adults so much?! And the parents, siblings, cousins, grandparents and friends that love these little mito warriors are warriors themselves. Where many of us would curl up into a ball, these families share the struggles and joys of their little ones. They have faith when I'm not sure I could. They remain hopeful when everyone else has given up hope. These are the type of people I've become "friends" with over the last 3 years. I'm so proud to have gotten to know all these families and my heart breaks when I hear of another loss in our "community". Heaven has too many of our mito kids!
I guess that's why I share our story and their stories. To raise awareness of a fairly unknown disease that is taking away amazing kids. I wish we could cure mito but that seems unlikely to happen tomorrow. What will happen tomorrow though, is that mito will be attacking kids, harming them...many of them permently...and yet most people have never heard of mito. It is a silent killer! If it is going to steal away these brave souls then it should have a name and everyone, EVERYONE, should hate it! Not just a small community! I could go on and tell you all the reasons mito could affect your family. Things like diabetes, Alzheimers, Parkinsons and some cancers. And all these and more are true but tonight the reason to hate mito is for Cooper Knight......his mom Sarah, dad Kevin, big sister Caroline and big brothers Oliver and Adam! That's why I hate mito tonight!
Cooper's service is Tuesday at 10am. His favorite color is orange. I'll be wearing orange and thinking of Cooper even from miles, hours and states away!
Tuesday, March 1, 2011
Roller coaster
You know you need to blog more often when you have go back and look at the last thing you talked about on the blog! It just seems like we are pretty boring doing the same things day in and day out. If "boring" makes you think "easy", you'd be wrong but we are thankful for "boring" anyway.
I realize that last week I posted that wonderful video of Asa walking in the gait trainer. Well, he hasn't done it since! He goes crazy when I put him in it now. What's that about?! Today when I dropped him off at school I asked that we start looking at getting a manual wheelchair for Asa. I'd love for him to walk as his main form of mobility but that just isn't happening fast, at least not as fast as either of us needs him too! He wants to be independent but bottom scooting isn't the way to go. And using the gait trainer takes ALL of his skills and is hard, like work not fun. I don't blame him for not wanting to use it all the time. Imagine walking with 10 lbs weights around your ankles while balancing a gallon of water on your head. It would be hard, even impossible, so you'd cut out alot of your walking!
At least that is one theory of why Asa is a screamer! He has the desire to go, do and be involved but not the skills he needs. And since he can't tell us what it is he is wanting we are left to guess. And if we let him cry then he pukes but if we give into him we are creating a bigger monster. Or maybe he is so exhausted from just being that he can't control his emotions. My mom says he just knows what he wants and knows how to get it. So until we give him the way to get it on his own or the words to use to tell us, he'll just scream and we'll just jump and guess. Good times!! We have made some small changes. We all use the same "no, screaming" message as soon as he starts screaming. I've been trying to get him to point or sign. This still needs a ton of work. Mostly I feel like we are failing. Yesterday he wanted me to walk him around. This is after we'd been doing that all morning. Picture me hunched over with him holding my hands and leading me around. So, to give my back a break I tried to set him up in the gait trainer. He completely lost it! It ended up with him nearly puking and then zonking out for his regrouping nap. So I don't know.
Boy that sounds really pathetic doesn't it! And yes, it is nerve racking to deal with this new stuff, BBUUUTT Asa is doing so well in so many other areas. He is eating up a storm! Did I tell you we have him on a diet?! Not really but since he is eating so much real food we are only using 3 cans of Pedisure instead of 4. And even though he isn't walking on his own, he has made great strides while you hold his hands. And yesterday moring he scooted into the kitchen and got into every low cabinet pulling out pot, pans, storage container, storage bags and anything else he could find. He even got into the dishwasher and pulled out the clean silverware! It was the most wonderful mess ever!
And we had some fun art projects once the big kids got in from school. Asa liked getting his hands painted and would lean in to smell Cade's hand. He is naked because he had paint everywhere! I wish I'd gotten a pic of that. I did get video. And yes, he is painting with a spoon and I do realize how this could confuse him since we try to get him to put the spoon in his mouth and then tell him "no" when it is covered in paint. He really never tried to put it in his mouth and only had it a second. He liked using his fingers better!!
Ok, I have 3 more pics but I tried to load them 3 times last night and twice this morning! Since I'm feeling like I want to throw the computer out the window, I better step away! Maybe I'll try them later.
I realize that last week I posted that wonderful video of Asa walking in the gait trainer. Well, he hasn't done it since! He goes crazy when I put him in it now. What's that about?! Today when I dropped him off at school I asked that we start looking at getting a manual wheelchair for Asa. I'd love for him to walk as his main form of mobility but that just isn't happening fast, at least not as fast as either of us needs him too! He wants to be independent but bottom scooting isn't the way to go. And using the gait trainer takes ALL of his skills and is hard, like work not fun. I don't blame him for not wanting to use it all the time. Imagine walking with 10 lbs weights around your ankles while balancing a gallon of water on your head. It would be hard, even impossible, so you'd cut out alot of your walking!
At least that is one theory of why Asa is a screamer! He has the desire to go, do and be involved but not the skills he needs. And since he can't tell us what it is he is wanting we are left to guess. And if we let him cry then he pukes but if we give into him we are creating a bigger monster. Or maybe he is so exhausted from just being that he can't control his emotions. My mom says he just knows what he wants and knows how to get it. So until we give him the way to get it on his own or the words to use to tell us, he'll just scream and we'll just jump and guess. Good times!! We have made some small changes. We all use the same "no, screaming" message as soon as he starts screaming. I've been trying to get him to point or sign. This still needs a ton of work. Mostly I feel like we are failing. Yesterday he wanted me to walk him around. This is after we'd been doing that all morning. Picture me hunched over with him holding my hands and leading me around. So, to give my back a break I tried to set him up in the gait trainer. He completely lost it! It ended up with him nearly puking and then zonking out for his regrouping nap. So I don't know.
Boy that sounds really pathetic doesn't it! And yes, it is nerve racking to deal with this new stuff, BBUUUTT Asa is doing so well in so many other areas. He is eating up a storm! Did I tell you we have him on a diet?! Not really but since he is eating so much real food we are only using 3 cans of Pedisure instead of 4. And even though he isn't walking on his own, he has made great strides while you hold his hands. And yesterday moring he scooted into the kitchen and got into every low cabinet pulling out pot, pans, storage container, storage bags and anything else he could find. He even got into the dishwasher and pulled out the clean silverware! It was the most wonderful mess ever!
And we had some fun art projects once the big kids got in from school. Asa liked getting his hands painted and would lean in to smell Cade's hand. He is naked because he had paint everywhere! I wish I'd gotten a pic of that. I did get video. And yes, he is painting with a spoon and I do realize how this could confuse him since we try to get him to put the spoon in his mouth and then tell him "no" when it is covered in paint. He really never tried to put it in his mouth and only had it a second. He liked using his fingers better!!
Ok, I have 3 more pics but I tried to load them 3 times last night and twice this morning! Since I'm feeling like I want to throw the computer out the window, I better step away! Maybe I'll try them later.