Saturday, September 25, 2010

The end of awareness week

Today was the last day of Mitochondrial Disease Awareness Week. So I guess I'll just put my soapbox up and bring it out again next year.......NOT!!

I started off strong this week. I had materials ready at Asa's IEP on Monday. We had awareness night at Chick-fil-A on Tuesday. I've made phone calls and sent some emails. And if you are a Facebook friend, you know I've driven you CRAZY with the mito posts and mito info. Then when I checked Facebook on Friday, I had the wind knocked out of my sails!

As I sat down to have my first cup of coffee and read FB and emails, I found this post by a dear mito mom, Missy:

Samuel received his healing tonight. He is now dancing in Heaven, eating ice cream and brownies. I will forever love and miss my perfect little boy.

Can your heart be torn apart any more than hearing about the loss of a child? A 4 year old! What about the loss of a child from a disease that so many have never heard about? And I was feeling so proud of myself for having told 2 dozen people about mito this week! REALLY?! How inadequate!

I only met Missy and Samuel in real life this summer at our visit with Dr. Koenig in Houston. It wasn't planned and it was just quick introductions and hellos. We were leaving the office and there sat the Knight's in the waiting room. I had "met" Missy online shortly after Asa got diagnosed. A year and a half ago Samuel got very, very sick and because of Missy's update and sharing, I began to feel like I had met them in person and not just through a computer screen. It may seem odd to some people to think you can form friendships and bonds even though you are many many miles away. I can say though that I have so many online friends who I love so dearly and who have touched my heart even though we've never met in person. I have to say that I've only chatted with Missy a few times online, a few messages back and forth, so I can claim no right to any of the pain or hurt or sorrow that his family and friends must be feeling.

And my point is just that. How can a child and a family who you've only just gotten a tiny glimpse of, touch you so much? I believe it is all God's plan. I believe God just creates some people to be able to touch others so deeply. I don't understand why He then takes these precious souls too early. There is a ton I don't understand.

But I do know this, if you check many of the blogs listed to the right, there will be a tribute to Samuel. And I know that his story and his name has been shared over and over and over. I know his lessons have traveled and will continue to travel. And I know he will be in my mind and heart for many, many, many more awareness weeks.

So when I'm burning up Facebook with mito reminders or shoving flyers in your face or screaming about mito or begging for donations to the UMDF, it isn't just for a cure Asa and some stupid, bothersome muscle weakness. Developmental delays and feeding tubes are just a drop in the bucket. If you look at Asa or our family and feel sadness or pity or better yet, think "but for the grace of God....", I ask you to think of the Knight family. Think of Missy and Ben, Samuel's parents. Think of Lauren, his big sister. Think of Cooper and Alex, his best mito friends who are both in the hospital at the moment. Think of their loss and grief. Then think of what could have been for a beautiful, happy, friendly, sweet little boy whose little 4 year old body was ravished by an ugly, terrible disease called mito.

Will we have a cure tomorrow? NO. We will have a treatment tomorrow? Doubtful. Will we have awareness tomorrow? I will. Will we have hope tomorrow? I do.

If you want to read more about Samuel and his wonderful family you can here. And be sure to check out Amber's tribute to Samuel at her beautifully written blog here.

And don't forget to hug your little (or big) ones tonight! What a blessing! Each time I pulled up Asa's meds or made a bottle of Pedisure the last few days, I've whispered a prayer for Missy and thanked God for Asa.

Wednesday, September 22, 2010

Awareness night at Chick-fil-A 2010

We had a GREAT night!!! There were so many people there! I could hardly believe it. I know that many just happened to be at Chick-fil-A on a Tuesday night but I also know that a ton of people showed up for Asa.....for us.....for the UMDF! I hope we got the word out about mito! I don't have the total yet but the manager said we increased traffic by 50%!! Now if all those people mentioned mito, we are in business!

This is just some of the goodies that Jill and Sara made for the night!

Sara also got the Chi Omega ladies to hostess for the night!

I was shocked when our mito friends from Millington came in!!! It is 1 1/2 hours to Jackson from Millington, maybe more! And on a school night! The big kids all had fun on the playland at Chick-fil-A. The enclosed playland is reason enough to use Chick-fil-A next time!!

And we had soooo many friends there.

(And if your picture is not on here it is because: 1.) My photograph skills are lacking! 2.) I knew you didn't want your picture on here but I wanted one for our own keepsakes. 3.) My photography skills are lacking! I should really learn when to use the flash and when to turn it off! lol)

I never cease to be amazed at how generous people are with their time, talents and money. I know so many people had other things going yet they still came by, even if it was to go or at the drive-thru. Sara and Jill surely have better things to do and yet they completely volunteered the time and talent to help make this event special to me. And I had people drive from great distances to come see us. I'm sure it would have made more money sense to send in a donation in the amount spent on gas and food but to show up is something special. The money is fine but the support is what a tired, worn out Moma needs sometimes!

I have a hard time putting myself out there for Asa, for our family. But then I think about all the other kids affected with mito. I think of the kids who passed away just this month. I think of the families who are so tied up during awareness week with just keeping their little one alive, that they don't have the time or energy to raise awareness. The families were the day to day is struggle enough. We are in a blessed place right now with Asa. He is happy and healthy. We are surrounded by people who love us and are able to help us. These things may not always be the case. So we do while we can. And we hope that we do a good enough job raising awareness that we have people who can do the work when we can't.

Saying thanks isn't enough. I don't have the words that would be enough. I just pray that God blesses each person that has given for us in any shape or form!

If you didn't make it out and want to help you can go to the UMDF site. There are ways to make monetary donations, of course but you can also find ways to advocate. You can contact your Senator or Congressperson. You can educate yourself so you can help spread the word about mito. There is a list of local UMDF groups and chapters in your area. Believe me, we need more people able to do some of the leg work on these events!

I would have never picked this journey we are on but I'm so thankful for all the amazing people we've be blessed to meet. God is so good to us and provides all our needs!

Monday, September 20, 2010

IEP day!!

Today was Asa's IEP. In IEP is an Individualized Education Plan. Asa has to enter the school system when he turns 3 so he can get therapy. And he can just fall right into a regular classroom, especially at 3 years old! So I met with school officials, the teacher, the nurse, the OT, 2 speech therapists and Asa's EI teacher and coordinator, who we have to leave! :-( There were a dozen or more of us in there working on a plan for Asa!!

And I think it went really well! We had done evals recently and the teacher had obviously done her homework to get to know him. On paper at least. The teacher called one Sunday and we talked a while about things shed need to know about Asa and things I'd like for Asa. I have to say that for a group who'd never worked with Asa, they sure seem to understand him!!! The OT he'll have was his OT when he first started OT at 6 months or so. The SLP worked with his current SLP until recently and they are friends. So in a way maybe some of these ladies do know him.

Today though they met the real Asa!! Not one on paper but the little guy who bottom scoots around a room. The boy who wanted the flag down and a couple of people made it happen! The sweetie who grabbed everybody's ear that picked him up! They saw how he likes to scribble on paper like he's a grown up and how he fusses and grunts when he doesn't get to play on the computer!

I really can't complain about the way things went! It was alot of info to take in but my brain actually kept up! I know y'all must have been praying for that! There was plenty of give and take. Everyone seemed interested in my ideas and had tons of great ideas they shared with me!

Asa will start on October 19. He'll go 2 days a week for a while. We'll gradually add more days until he goes 5 days a week. Afternoons only though! He'll wear a uniform like the big kids. He'll have 30 minutes of PT, 30 mins of OT and 2 30 min speech sessions a week.

I'm really excited and I think Asa will like it too!

Tomorrow we are having am awareness night event at a local Chick-fil-A! I'm so excited!!!

Sunday, September 19, 2010

Super busy weekend!!!

This weekend has been jam packed and my head is still spinning!

We started out Saturday morning with a benefit run in Jackson. It was the Racing So They Can Ride benefiting the hippotherapy program. Asa doesn't use hippotherapy but I've heard nothing but good things about it and it whole program is paid for by scholarships. This is welcome news to any parents ears!! I hope one day Asa will try this out. I filled out the paperwork this spring but never sent it in. With his sensory issues and fear of animals, I just wasn't sure this was the right time for him to try it. Maybe next spring!

This race is in memory of a special little boy who also had mito. To have 2 kids in the county diagnosed is amazing to me. Unfortunately I never got to meet Caleb. He passed away in July '08 and Asa wasn't diagnosed until November '08. Caleb's parents have been so open and supportive of us and I this was the first "event" that our family did as a Team Asa.

Team Asa 2010-Christina (my longtime friend), Jakob (nephew), Kayla (Anna's BFF), Rayn (nephew), Anna, Barry, my Moma, Cade, Asa, Gracie.....I had the camera!

This year I decided I was gonna try to run the 1 mile event! They also offer a 5K run and a 15 mile bike ride!!! Believe me the 1 mile was a lofty goal for me!! I've been "training" on the treadmill for a few weeks but outside is so different. Turns out that I did make it the whole mile!!! Woooo Hoooo. Cade and my nephew Jakob can in 1st. I wasn't in the front but I did run it all!! My super amazing friend Christina was running too and that is the only reason I was able to make it! I kept thinking she'd want to take a break but nope, she just kept on going so I did too! Thanks Christina!!! Next up, the Mito What? 5K in Millington in March 2011!!!

After the race we had to run a few errands. Nothing like walking around Walmart on noodle legs!

We got home after lunch. Asa got pukey. Gracie and Cade went to my 3 nephews soccer games. Anna and her friend wanted me to take them to the fair. I should also point out that it was 95 degrees that afternoon!! For some crazy reason I agreed and I loaded Asa back up and off we went.

The big kids had a great time at the fair and Asa and I enjoyed the (indoor!!) 4H building. There was lots of displays and even a little pageant going on. I tried to get Asa to check out the ladies but he wouldn't listen! I did meet a special ed teacher who I loved chatting with. At first I was a little taken back when she started asking questions. Many times people seem surprised if I tell them his cool stroller is really a wheelchair or that his has issues. I was kinda surprised she recognized him as a special needs kid. Once I found out she was a teacher it all made more sense. I am noticing that we get more looks these days though. I'm sure that will happen more and more often as he gets older.

Seriously after the run, walking around while running errands, walking at the fair, all I wanted to do was crash last night!! I was in bed by 9:30pm! And it wasn't easy to get up at 6 this morning for church!

But we did get up and get going and had a great day in the Lord's house! I'm always so thankful for my church family. There are times when we can't go because someone is sick but thankfully Barry and I can switch out so neither of us misses too much. Many Sundays Asa is just a pill! He is difficult to get up and then he won't eat or he eats and gets sick. Seriously the devil will work if we let him!! Sometimes we do throw our hands up and Barry will stay home when it just gets too difficult. Still neither of us likes to miss too many Sundays!

After church we had lunch at my moms, as usual! The lady is a saint for cooking for all of us!!! Asa, in true form, got sick! After lunch Asa stayed with Barry and I went to get materials for a presentation board for the mito night at Chick-fil-A on Tuesday. Turns out the store no longer carries any of the stuff I had in mind! That's OK, I can work on it tomorrow night! You know, right before the event! I hate feeling behind!!

I also picked up some yard sale stuff from an awesome Facebook friend! Seriously, what did we do before FB?! Oh, yeah, laundry, dishes, cook and clean! Anyway, that brings me to the fact that I'm seriously behind on my yard sale prep. Well, not really behind but I don't see an opening to get it ready this week! I'm sure I'll think of something, maybe less FB!!! Oh, who am I kidding, no I won't!

Tomorrow is Asa's very first IEP. The meeting where we plan out the rest of his life, I mean his new school year! Again, I feel like I'm forgetting stuff. Will I make important points or will I only remember the silly stuff? Of course I'll take notes in with me. The same notes that I should be gathering right now instead of blogging.

Say a prayer for me in the morning!

Friday, September 17, 2010

Asa the movie star

Asa PT asked if Asa could be a subject for a video she was making. She is putting together a presentation of ways to trigger kids into proper posture even if you aren't working on PT. My understanding is that if you are a classroom teacher and you see a child in poor posture with a stacked neck and curled in shoulders, there are little touches you can do to get him back into good posture. I find this whole idea very helpful as a parent too. I don't know much about physical therapy but I do know of several touches that triggers better posture. So naturally I agreed that Asa could play!

Today was show day and I'd actually forgotten about it! His hair was messy and his shirt was huge! He was very busy though so that was good footage. Too bad he showed all of his bad postures!! Hehehe! I'm teasing he did really well! He gave several great examples of poor posture and with just a stroke he would be alerted and get tall again. It really is an amazing thing!

One funny though, we took his shirt off so you could really tell how low his tone is and how slouchy he was being. At one point he was sitting down and his belly was all pooched out......with a feeding tube! Lol!!! He had a gut with a spare tube! In reality he had sucked down a juice box was pretty bloated! I wish I had a picture of that!!!

We'll be videoing again next week too! Asa is such a camera hog!!

Oh and I'm sorry about going on and on last post! I didn't even realize how long I rambled! I got several really great FB messages though. I guess I've got some pretty awesome people supporting me! Thanks, love y'all!!!

Thursday, September 16, 2010

A little reflecting......

My heart has been a little heavy lately and I haven't had time to sit and write it all out. This blog is MY therapy and if I don't clear my mind i can't let it go. Usually once I post about something I sleep better at night. Funny how things can weigh on you!

Asa will be starting school in about 3 weeks! This is gonna be a huge change for both of us! I know it will be wonderful and I think most of anxiety is about the time leading up to school and planning for school, not school itself. The paper work, the choices available but mostly the evaluations!

Asa is evaluated often. Every 6 months for each of the 3 therapies and EI. Plus a monthly handout from Early Intervention. Then there is the yearly appointment with the developmental ped. Trust me, no kid is more closely watched!! But I've found that starting school requires a different kind of evalution. It requires ME to evaluate Asa!!

You see, when you have a kid who doesn't follow the typical path at some point you stop looking at the typical kid path and you look at YOUR child's path. It is better if this happens sooner rather than later. I remember when Asa was a newborn and I'd think "I don't remember my big kids doing that" or "didn't Anna, Cade and Gracie make eye contact by now". And then there is the comparing him to other typical babies. He holds differently. He holds heavily!! You know when your baby falls asleep in your arms and is just so heavy, that was Asa's norm for soooo long! It is a little better now! It is just normal to compare kids.

At some point though I stopped comparing Asa to other kids. When we did evals I was excited to see him accomplish goals and to set new ones. Even if the ones we checked off were tiny for the typical kid! That's how I got the title for the blog, celebrating inchstones. That is what I do! Each small step is huge for Asa! So maybe others look at him and see all he CAN'T do but I look at him and see the huge strides he has made!

But not for school! I have to take a hard look at what he can't do. That is the only way to be sure his needs are met. I can't say "yay, he can bottom scoot". I have to look closely at the classroom to see if Asa will be able to get around. I can't look at his sensory issues and just see how well he is doing lately. I have look closely at the way we've adapted our whole lives so he doesn't get overstimulated. Which classroom is going to be more sensory friendly. To get Asa what he NEEDS for school, I have to take my blinders off! This doesn't mean that I don't see the great strides he has made but I also have to see where is so far behind.

Another realization is that despite all the therapy, supplements and work we've done, Asa has not caught up. He is no closer to his peers than he was as an infant. Like I said he is the most watched kid! I have most of his evals. If I go back and compare I can see that Asa has made great progress on his devlopment arch but he is no closer to a typical development arch. He has been consistantly 75% delayed gross motor wise. He has been consistantly about 50% delayed in other areas. That means at nearly 3 years old, he has the gross motor skills of a 9 month old. And his communication and cognitive skills are that of a 16-18 month old.

I guess I expected that at some point he'd close the gap and get closer to his peers but in 3 years that hasn't happened. I guess it still could. One good thing about my new awareness is that I can better plan for Asa. I can stop putting off those adaptive things that I've hoped we'd outgrown! With such a delay it seems highly probable that Asa will be in some type of chair for the mobility. A chair requires a ramp so why not go ahead and get started on that. It seems unlikely that he'll be able a regular bed with no adaptations so why not start shopping now. It takes eons to get SN equipment.

I'm not depressed about these new revelations. I just don't usually spend much time focusing on Asa's delays. Does that seem crazy since my whole life is about his delays, therapy and appointments. I just see a cute, sweet, tough little guy who is full of so much love!

A brilliant mom, who has a SN son, blogged about her son starting 7th grade recently. Her words fit my mood perfectly. Like Alison, I realize my child doesn't just belong to me. Asa is so much more that mine. God's love for me and Asa covers all sense of loss and defeat that a negative eval can carry! His love and comfort have seen me through many hard times and will this bump in the road as well.

Please go read Alison's post! I feel like I can learn a lot from her!! She is also a mom of 4 but her kiddos are much older than mine. I can only pray that I manage this new life as well as she has helped her family to do. They are involved in sports, church, camping, well, life! That is my goal and my desire! Delayed or adapted or whatever, we will be involved in LIFE!!

So school begins and Asa's teachers will fall in love with him just like everyone else who works with him. Of that I have no doubt. I'm so thankful that there are amazing people in this world who don't just see the delays but see the smile and twinkling eyes. And if I should happen upon someone who can only see the delay, well, he or she better look out!

Tuesday, September 14, 2010

Oh, what a day!!

I've had a whole other post rolling around in my head. A post about grow up and time passing and school starting. It was gonna be great!! Trust me, you should check back in for it! But the events from today trumped all that deep thinking!

Asa had a hard time going to bed last night. Then he woke up at 5am! He wasn't too I'll though so at least I could go on with my routine. He drank his Pedisure easily too. I was having an easy day!

We went to feeding therapy. Asa did ok. He actually took a spoon of oatmeal to his mouth while we were talking. He didn't eat it but it touched his lips. I'm impressed! Jill just had to remind me that Asa only has 3 more therapies with them! 3!!! I had not counted them! And the last week we have plans for a fall break trip and won't be there! So sad!!

While Asa was having OT I ran an errand to talk to a group that is starting a HBOT clinic in Jackson. HBOT is hyperbaric oxygen chamber therapy. Some people are using this to treat things like CP, autism, mito and other developmental delays. There is controversy because it is hard to measure improvements and there is no standard amounts. It is kinda new territory but I do believe great things can come from it. I've seen video and blogs of too many kids to just discount it altogether! The problem is that it is expensive to try. I was only aware of big clinics in other states. I almost ran off the road when I saw the sign for this clinic last week! Researching this will occupy my time after Asa starts school!

Now the fun begins!!

I drove thru and got lunch for me then Asa and I had a picnic in the car. I was sitting in the back with him and the van was running with the AC on high. Asa drank his Pedisure and I ate. He started getting crabby and sweaty. I just thought he was tired from his early wake up and the fussing got him sweaty. Plus heveanted my cup of sweet tea. Not just the tea cause I put some in his cup! Finally the screech got to me and I gave him the huge cup. Then we went to Walmart!

As I got him out of the van I realized he was gaggy and droolly. Thankfully I grabbed a cup and burp cloth! When we got inside heveas completely drenched in sweat. He wouldn't lay back and go to sleep but instead he dozed sitting up. He gagged several times and I was ready. I was cooling him and begging him to fight off the puke. I have to say, I thought I was doing pretty good. Heck, he was asleep and hadn't puked, I was all out sure he beat it!

Now Anna says I can strike up a conversation with a tree. And when I saw a lady wearing a Special Needs Baseball Association tshirt I just couldn't help myself. We talked about delays and diagnosises. We talked school and therapy. I was enjoying my little visit. Then Asa woke up and projectile vomitted into the other lady's buggy!! Yep, just that quick! He just woke up and there it went! Thankfully he didn't hit anything in the bug and only hit the empty end. Still I'm sure they switched buggies! And I hope Walmart got the right aisle as I was dashing to the bathroom to clean us both up. I managed to get most of the rest into the cup but we had a mess!

After that Asa was better but not happy. I came across another lady who had a little girl in an umbrella style type SN chair. Of course I couldn't let that conversation go!! And Asa was empty, right. I still didn't get him near them though. So I had another nice conversation! Anna will be so proud!!!

After the shopping and paying and loading and getting in the car, I realized what had happened with Asa. The fan was set on defrost so no cool air was coming through his back vents. He overheated!! And it wasn't overly hot. I was very comfortable while we ate. That just shows you how easily it can happen!

He did go to sleep as we drove to school pick up but woke up while we still waited. And he was ill!!! I tried everything short of getting him out and he just screamed! Oh and slapped his legs. That's his new way of showing frustrations. He just slaps whatever is nearby. Buckled in the carseat all he could hit was himself. When Cade got in the car, he commented how red Asa's legs were. We got home and I think he may have bruised his left leg! That's gonna look great!

I spent an hour calming him after we got home. Now he is upstairs playing with Cade and Gracie. He pointed to go up there. This is a new and helpful skill! Makes it much easier to figure out what he wants. Oh and in the midst of his fit at home, he started signing "Moma". We've been working on this but I'm a little offended that he used it in anger! Oh well!

Thursday, September 9, 2010

Some pics

Oh so many things are going through my wee little mind but I'll spare you and give you mostly pics tonight. I will say that the next few weeks are gonna be jam packed and I'd be grateful for any prayers for my sanity that you can offer up.

On Monday, Sept. 20 I'll have Asa's IEP meeting. I'm sure this will be fine but my hands get all sweaty just typing these words. There is so much to cover and I'm having a hard time staying focused and retaining information these days! Ok, I've BEEN having trouble focusing and retaining info! lol

On Tuesday, Sept 21, we are having a mito awareness night at Chick-fil-A (on Vann Drive) for you local folks. This seems to be easier than the Maggie Moo's event last year but again, it requires planning and forethought....hard to come by here. We will be selling t-shirts that night also!

On Saturday, Sept. 25, we are having our semi-annual rummage sale. People have been so kind and generous to donate their Goodwill stuff so that we can add it to our yard sale collection. If anyone local has anything they'd be taking off to donate, we'd sure appreciate it if you donated it to Asa instead. We'll come pick it up and everything!

Ok that was a lot more blah, blah, blah than I intended!!! Pics already! Oh, I should say though that I imagine myself a decent photographer but turns out I'm not! I have a decent point and shot camera but I lack lighting skills, setting skills, prop, editing, creativity and well, everything else! So my cell phone has been my go to. I know sad but true. I'm sure there is a support group for people who document the most special of life's moments on a cell phone camera!!! Ok, ok, pics......

Sunday, Labor Day weekend. We had Sunday lunch with my mom, per the original agreement we set we our family only had 2 little ones (we now have 8)! I'm sure she wants to renegotiate the terms but I'm not having any of it!!

Anywhoooo, after being a total noodle for a good week or more, Asa completely rebounded and had a blast! Here are the pics of him eating my ice cream cone that I talked about in the last post. So cute!!! You do realize more got on his shirt than in his mouth, right!

And him in his little Power Wheels that his OT let him borrow. I've been looking for deals on something similar for him birthday.

And I've shared before how he loves bananas. Not really the eating of a banana but just holding one and scooting around with one. At feeding therapy on Tuesday he did eat some of one. This isn't new but what was new is that he opened right up for it. He usually resists our first attempt at most anything. I usually "help" him with a bite or two first. Not the banana on Tuesday. So of course I bought some more at the grocery store that day.

And today for breakfast Asa had some oatmeal and then his banana. He didn't even hesitate. He opened right up again. And then he wanted to hold the banana. Now you may not realize that with his low tone comes low oral tone. He doesn't bite. He doesn't really chew. Mostly stuff is pureed or it melts. But he started self feeding the banana. First with licks and then even a few bites. And the fact that he wanted to touch and hold the banana is progress enough! Of course I had my phone nearby so you get some pics! YAY!!!

Sunday, September 5, 2010

Well, shut my mouth!

Asa has done it again! He has proved his Moma a liar! But I couldn't be happier about it!!

I have had plans all week this past week. We've had revival at church. I've had errands to run. We planned to go camping. And Asa ruined all of these plans! When he is in tip top shape, he is at least double the work of a typical kid! When he not up to par...well, I want to put my head in the sand and never leave the house!! That is how this morning started out!

Barry stayed home from church with Asa. It just became too much to fight with him and get him ready! Since it is a holiday weekend, there were many different activities going on. We tried to camp on Friday but it didn't work out. For today I made no plans! I had hopes but I really thought we'd eat lunch at my moms and then end ip back home while everyone else got to have a ton of fun. The weather was perfect for Asa though so he had an amazing day outside!!

He rode around in his little car. He enjoyed his swing outside. He used the gait trainer outside (although not much). AND......for the first time ever, he went down a slide!!! I know this sounds so boring but it was great! He LOVED it!! I started out with Gracie holding him but that wasn't a good plan. Then I held his hands as he went down. Still he wanted more freedom! Soooo I started sitting him on the slide and letting him go down alone! He loved it!!! I could barely get him sitting down before he was trying to scoot down again!!

I made him take a couple of breaks. One time Barry gave him a lick of his ice cream. Asa started signing "more" with no prompting!! Lol! I got one to share with him and he quickly just took it from me and called it his own! He got so sticky!

He was even feeling good enough that we went down to the creek where everyone was going camping. We did get to enjoy the campfire and some hot dogs!! I wish we could have stayed longer!

Asa got sick and we came home after he zonked out. He did great though!! He did endure the sounds of a four wheeler, golf cart, go cart and a dirt bike! Not to mention the sound of 7 other kids playing!! It was a fun Sunday!!!

So maybe Asa has been bored around here with just me! Maybe he needs more activity. I'm pretty sure I don't have the energy to ay like we did today, everyday!!!!

Saturday, September 4, 2010

Another week down

Sometimes I just find myself wishing the days away! Looking forward to the weekend or the next event or the next holiday! It seems like there is little to celebrate these days and most days i'm just counting down the hours until bedtime! I know I'm not alone in that feeling!!

Asa is still weak. He won't let us help him take steps. He stops, whines and turns around to be picked up. Even in PT with the gait trainer, he was leaning on the supports more than being upright. We tried the moblie stander again but he only moved it a tiny bit. His posture was horrible!!

The odd and sad thing about this is that his mind still wants to do all the things he was doing!! This creates some, uh, frustrations!!! He wants to be all over but his body won't let him. This leads him to scream and screech until someone does what he wants. But it is not easy to tell what he wants! Mostly he wants to be moving. That is kinda hard on my body! Wonder if I can find a wrap that will hold a noddlely 30 pounder!!

The weather was wonderful here today. This evening we took Asa out for a while! He rode in his little power wheel car that his OT loaned us a while back! Asa was really into it today! At one point he was close to a tree and I thought he was going to get stuck. Turns out he drove TO the tree! He reached out to the tree trunck and the leaves! He drove until the batteries ran out!!!

On the eating front Asa is not eating early. It usually takes him several hours before he'll eat. He spends those hours completely cranky!! He did have waffle this week. And he tried diced pears one day! Oh and donuts! So some new things. He has also been getting sick every night again. I thought the Reglan had taken care of that business!