Inchstones!!

The thing about reporting inchestones is that they seem so tiny. So unimportant. If you aren't in the moment, they seem to disappear into the day. You blink and you miss them!

Inchstones for today:


1.) Asa tried a new kind of cookie today. It was a little butter cookie with a hole in the middle. I wasn't sure he'd even touch it but he picked it up and put it on his finger like a ring!! I ate one (to show him what it is for, duh!) and then gave him a bite of mine. Once he realized it was food, he put his right in his mouth! Let me tell you, it was messy! I don't know whose idea this was!! In the end he gummed on 2 cookies!!! Then took a bath! :)


2.) Asa tried ketchup! I put ketchup and mustard in a ziplock bag and let him poke and play. After he was into that I put ketchup on his tray. It took a minute but he got down and dirty!! He was smearing it on his face and chest so I took that as a sign that he might accept it in his mouth! I took his hand and put his fingers in his mouth. At first he smacked and made horrible faces. After a few times he was more accepting and acted like he really wanted it. Unfortunately he never put his fingers in his mouth on his own! That would have been a home run!!! Still, I'm pretty darn happy that he touched and tasted!!


3.) We've been hearing lots of sounds from Asa. Usually he just squeals, screams or cries. We are constantly making word sounds with him. "B-b-b-b-ball" or "M-m-m-m-m-moma". The list goes on and on! I must sound crazy when we are in public but this is what we do! The last few days we have heard some "mamama" or other constant sounds from him. It is not words or even the same sound but it is something. We used to hear "nanana" and "mamam" and even "bababa" but at some point those went away. Now we are hopeful they might be coming back!! They aren't here yet, but I'll keep babbling along!!

4.) Asa is entertaining himself for 30 min. at a time....sometimes! He will happily scoot around and open and shut doors. Or play with paper. Or play in the fridge. I know, these are the normal baby toys but it works for him so it works for us!!

5.) Asa has socialized with all of his siblings this weekend! He played with Anna while she ate some EasyMac....he wanted the container not the food, she tried! He laughed and laughed while playing ball with Cade! Gracie entertained him when she roller bladed around the kitchen. He gets such a kick out of them all! They make him laugh, he makes them laugh, we all laugh!!

6.) He didn't poop in the tub this morning! YAY!

So that is our inchstones for today! Pretty impressive day, I'd say!!

Champions!!!

Gracie's basketball team came in first place in the tournament. Now I should mention that it is a church league with only 4 teams, not the Olympics! But their team didn't win a single game until the last one. Then they won both tournament games!!

It was hard fought too. The other team would lead by 2. Then we'd get ahead. Then it'd be tied. It went into a 3 min. overtime. Then, with 3 seconds left, there was a mix up and the game was stopped. The clock was reset and the other team threw the ball back in. ACK, the nerves! They threw a shot up but missed and Gracie's team won by 2 points!!! I was hoarse from cheering!!

And Cade decided to play baseball. I hope this is a good thing!! I'm not gonna spend the whole season forcing him to go to practice. I think he was holding out for us to bribe him. He needed a new glove and batting helmet. We set a limit and I think he was waiting for us to get him the "good" stuff before he signed up. Well, we won that battle! Several people told us today that they were sad when they heard Cade wasn't playing! I think it made him feel proud to know people wanted him to play! Anna actually gave him a pep talk, encouraging him to play! And she HATES the ball field. I was very proud of her for putting her own interest aside and being an encourager!

We came home and Gracie tried on her old cleats. She came out of her room with only one on. I asked if they fit, did she need new cleats. Her response.....I only need one, I found this one! LOL!!! Then she tried on Cade's old pair. Again she could only find one, and it was the same foot! We tried to tell her to wear one pink, low one and one black, high one! She didn't think that was a good idea!!

I'm so excited for baseball to start back up! I know, I'll be regretting that in a few short weeks. If Asa could handle the basketball game, I'm hoping he can handle the baseball this year! I saw a neat umbrella thing at Dick's today. It looked like a huge umbrella or half a tent. It said it just popped up and then you were shaded and comfy! Of course it cost $70!!! I'm getting ready to google and see if I can find a better deal!!

Asa had one reflux episode. Well, I'm guessing that is what happened. He was with Anna and we were watching Gracie's game but best I could tell it was reflux related. And he was tired! He didn't eat the Cream of Wheat this morning. He did eat cheerios though. And he fussed when we started the pump in the car until Barry opened the container of cheerios. Maybe he wants to be more oral but doesn't like the choices! Anyway, today was the best tummy day we've had in a while!!

And this is your last chance to sign up for the Mito What? 5K and be guaranteed a shirt and goodie bag!! It is gonna be awesome!!! It is in Millington TN on March 27th!! Almost 250 have signed up!!!

Happy Day!!!

Here are some pics of Asa yesterday at speech. He loves, loves, loves the clipboard!!

I emailed the GI about the reflux and Zantac. Haven't heard back. All emails become part of Asa's file so there is proof that we stopped the Nexium in Nov. and it didn't work. Plus my account of this time.

Overall he did OK today. He got sick 2 times but not puking. You can just tell it hurts him though. Not fun.

We played a new game on the treadmill too. I put a ball in front of Asa and as it rolled towards him he'd kick it and it'd roll right back to him!! He thought this was the funniest thing! We even set him up again tonight to show everybody else. In all he was on the treadmill for 10 mins. today!

And for the best news ever.....Asa had a record eating day!! I made him Cream of Wheat. Now I have to confess that I've never had this before. I love grit and oatmeal but Asa won't eat either of these. He did eat the Cream of Wheat though!! I mixed in some fruit babyfood. He tried it at all 3 feedings. In all he had 5oz!! I'm so excited about these 5ozs!! I'm mostly excited because he tried it each time! And each time he tired of it I gave him choc. cheerios and he gobbled them up!

And at this exact moment he is trying to stack corn on the cob cobs! I kid you not!! He is touching, playing but not eating corn on the cob!!! Talk about texture! I was eating mine and he kept reaching and whining. I can't believe he wanted to touch it. This boy is unpredictable!!





Oh and this morning he had just had a rough reflux moment and was very clingy. I finally was able to put him down and sneak away. Then I heard him scooting around. I looked and he was headed for Cade's room. I turned away and heard him scoot on in and shut the door behind him!!! He shut ME out! Too funny!! The only problem was that he stinkied and was sitting right behind the door. I couldn't get in!!! I tossed some toys in and away from the door. When he scooted for them I was able to open the door!! I better be careful how much freedom I give him!!!

So that was our happy day! I know I've been such a downer lately! It gets tough to watch him struggle so much. And then it affects the rest of the house!

And I've been asked several times how to comment on this site. If you look below this post, it'll give the time I updated and say "0 comments". You should be able to click on that and leave a comment. If you don't have a blogger account, just sign in as anonymous and leave your name with the comment. I still check the CB and I've tried to post some of the copied updates but it is soooo sloooow for me! I haven't even been able to leave comments for some of my favorite people on their CB. I still blame dial-up! :)

Hope you all have a great weekend!!

Another day!

Asa was so happy this morning! I thought the Zantac must be working. I was wrong!!

At PT they wanted to shoot a short video of a child using some of the equipment that was bought with funds from last year's fundraiser. They thought Asa's therapy would work out well. I said it'd be fine with me but there was no telling what Asa would have in mind!! Well, shooting a video wasn't on his agenda!! LOL! He did Ok but he was grouchy and sensitive. He has done much better the last few therapies and I was hoping he'd shine today. It will only be a 2 minute long clip on a news interview so I'm sure he showed them enough but last week he was on fire!!

And at speech later....well, let's just say his therapist let him take a treat home with him! When we tried to take it away he'd just scream!! Here's the story....

He loves his home teachers clip board! I've tried to get him other clip boards but he has no interest in them!! JoBeth's is hot pink and has a storage area under the clip board. Seriously, this is what we lure Asa with sometimes, a pink clipboard!! So at speech I start telling how much he loves this clip board and Beth pulls out a red one she has and doesn't use. You'd have thought it was a million dollars to Asa!! It had paper in it and she got him some markers....man, he was in heaven! And really, if we just tried to move it he'd start screaming! Thankfully she let us have it! YAY!!

So I get the idea that an office store might have a small version that would be perfect for Asa. You know, something more his size! So we stop at the store. I get out the small stroller. I take the clipboard from Asa. He loudly lets me know that isn't in his plans!!! We run in the store, him screaming, nothing distracting him, and look for a small one! Guess what...they don't have them. Maybe there isn't such a thing, I don't know! We were in there just a few minutes and Asa's screamed and kicked his feet the whole time!!! I got him back to the car, in his seat and gave him the clipboard and he was fine!!! How (and why) does he love these so much!! My silly boy!

Oh and while at speech, he put the marker in his mouth! That's right, even though we beg him to eat in there each week, he won't! This week his decides to try a taste of marker. And we kinda let him!! Just a little. Just cause we want him to be oral. And they are non-toxic. The box says so! And it was a yellow one so when he drooled it back out, it was *that* noticeable!

Then he got sick at school. And it had nothing to do with the marker. Just when the feeds were going he started getting sick so I turned them off and plugged up a farrell bag. I hate this reflux. I started feeds when we got home and I could hold him and he could doze. He got sick after that too! I hate reflux. Did I say that already?!!

I had a meeting tonight at Cade's school. They are getting ready for state testing and really pushing the kids. They wanted to inform the parents and give us some tips. Guess how many parents came......2! Yep, 2 parents in all of the 3rd and 4th grades! And the meeting was very, very informative. Plus we won a scientific calculator for the kids! One of the tips was to do some extra work on the weekends and over spring break! HA! I feel like I'm drowning already! I know it is important and we'll try but I can't imagine putting in extra time while getting ready in the mornings or on the drive in the car! Maybe most peoples mornings are so they can run vocabulary but not here!! And car rides....this afternoon Cade held the puke cup under Asa all the way home. And, by the way, Cade is a squimish as Anna (and me)! I can barely juggle the balls I have in the air now! Thankfully, Cade is doing OK. All the kids make good grades. True, they could always do better though!

Juggle, Juggle!

Reflux woes!

As predicted, the Nexium wean forced on Asa by the insurance company isn't going so well! He woke up last night. Then this morning he was puking. And PT was a bust! He was hurting again tonight and didn't want his bottle. We let him go to bed without it. There really is no point in forcing it in when he is so bothered already!

The GI called in some Zantac but it treats differently than the Nexium so I don't expect it to cut all the acid. Plus that stuff tastes awful! I just put it straight into the tube and avoided the mouth all together. It is really funny because Asa usually takes his medicine with ease! He won't open his mouth for a spoon but start at him with a syringe and he opens right up!

And I have a new definition for self-feeding! Asa will take an extension tube and put the end up to his tummy. I really think he is trying to plug himself up!! This afternoon Anna was trying to plug him up and he was resisting. He fights only because he wants the tube!! But she didn't want to touch it anyway so she was pretty jumpy! Anyway, she didn't twist the tube to lock it onto the button and Asa pulled it right off, making the Pedisure go flying on Anna! I was laughing so hard!! I'm trying to train someone else to use this stuff so I'm not the only one who can hook and unhook him! At this rate though, Asa might get it before Anna!! I can't say much because I used to be just a squimish as she is, maybe more so!!!

As I said, Asa didn't participate in PT much today. His PT suggested someone from the ins. company try to keep him while he was on this wean!! But, she called back this afternoon to see if Asa could participate in a short video at the center tomorrow! There is a fundraiser coming up and last years funds where used to purchase the equipment for letting the kids walk on the treadmill!! I told her I was fine with it but Asa might have other ideas!! He was very vocal in the PT gym today! Hopefully he is feeling better tomorrow and they'll get good video!

Asa was pretty opinionated all day today! We went in Target to get the new med. I put him in his Kimba because he was having a hard time. When we came out there was a buggy right beside the van. Asa loves, no....LOVES, buggies. He reaches out to grab other people's buggy when we pass. So he is pitching this fit while I try to get him in his seat. I told him he couldn't have that buggy but when we stopped again he could ride in the buggy. Of course, I used simple words but you get the idea! He totally calmed down!! So I said, "Do you want to ride in a buggy?" and he went "ah-ha"! Is that a word? It was kinda like a sigh but there was a definite "uh-ha" sound!! I really, really think he understood me! And yes, I let him ride in the buggy at the next stop!

Ups and downs

Asa had OT today. He played in flour, corn starch and cornmill! Sounds fun right?! He liked it too. Until Jim added water! The horror! No, he really wasn't that bad but he didn't want to touch the paste! And what a mess....glad we got to leave and Mr. Jim had to clean up! LOL I know Cade and Gracie will love to play cook with Asa!

Then we went to get the WIC. Not usually a fun appt. and today ended up being no different! Things went better than expected at first. We were gonna get out in record time. Then I checked the vouchers. They didn't include Asa's Pedisure. I really could care less about the cereal and milk and juice. We NEED the Pedisure! The sad thing is that Asa was on the pump during the whole appt. We discussed at length the tube feeds.

In the end, we were there for 2 hours. Asa was fed and then got sick. He had on his Theratog suit and it is warm so I took off his shirt as soon as we got in. When I had to wait on them to figure out the Pedisure stuff, I stripped him down to his diaper. He never threw up and I didn't drain him but he gagged and gagged and then zonked out. I hate seeing him get so drained and depleted!

It took 2 hours, 2 clerks, 2 dietitians but we finally got his Pedisure. Turns out the "system" won't let them print over 10 vouchers. Asa gets 12 for 3 months worth of stuff. I asked them to just give us the Pedisure and forget the rest but the system or them wouldn't let that happen. They can only give out 3 months worth because their "population" tends to lose more than that. GREAT!

You might wonder why I'd dare bash a system that I utilize. First, I'm not bashing those wonderful workers. I'm sure they wanted to throw up their hands and give up but they kept on working. At one point the clerk was going to override it on her own because she couldn't find anyone to authorize it but she knew we needed the Pedisure. So those ladies got huge "thank you" from me! Second, this is what I have to do in order for Asa to gain weight, grow and stay healthy. He has to be tube fed. We are actually fortunate that Asa can have Pedisure. At least we can find that on the shelves when the WIC runs out. But the home health provider won't deliver it with his other tube supplies because we qualify for WIC. So every 3 months we go through this routine. Every 6 months we have to bring a boat load of paperwork with us and Asa goes through the ringer with the nurse. Every 6 months I have to get a new RX from the GI saying Asa needs Pedisure. All of this just to get the food to feed Asa. Then there is the fun stuff of the tube!! Next time you drive through McDonald's and throw a Happy Meal at your kid, say a prayer of thanksgiving!!! And that is my third point. Just be so thankful when feeding your kids is simple. When it doesn't involve hoops and red tape! I took that for granted before! No more!!

And on another frustrating note, Asa's Nexium got denied. The insurance is making him take a 2 week wean to see if he needs it. This is a good idea but we just tried it, on our own, a few weeks ago and it didn't go so well. So now he has no reflux meds on board. I noticed some him flinching and burping earlier today. Then tonight he was hurting before bed. Maybe I could make some calls and get this overridden but I was a little busy today! I'm just gonna try to ride it out and who knows, maybe our trial was hampered by something else. Maybe he really doesn't need the med.

But our day did end on a fun note! We went to IHOP for supper. They had free pancakes and only asked for a donation for Children's Miracle Network. The pancakes were yummy. It was very, very crowded but Asa was happy. As long as he was happy we could handle the rest!! Asa even ate some yogurt while we had our pancakes! YAY!!! If that would keep up, I could kiss that WIC and tube good-bye!

Scootn'

Asa usually has a tough time after school. I don't know if it is the transition or what but he usually gets sick and clingy. And I don't really have time to baby him. I need to give the other kids attention after school. They are excited about their day and I have to deal with Asa's melt down instead of listen to them. Then there is homework to be done and supper to cook. Just not a lot of fun around here. Usually!

Things have been improving though. I started running the feed while we are in the car picking up the kids from school. Maybe having something on his tummy helps out. I try my best to get him to take a nap before so he isn't tired but sometimes that isn't successful! Still he has done pretty well last week and then today too. Of course that will likely change tomorrow! :) We don't get too comfortable around here!

Today we got in and Asa was so happy! He was scooting all over the place. Having a great time all on his own. Really, it was amazing!!! In between homework and supper I was so tired I couldn't keep my eyes open. Gracie was doing some extra writing practice and Asa was playing near her, so I laid over on the couch and closed my eyes. Maybe for 10 minutes! But I woke up to Cade telling me to come look....not usually a good thing! Asa had scooted from the kitchen into the living room, around the back of the couch, into the hallway and into Cade's room!! Then he pulled over Cade's trashcan and was playing with an empty soda can!! I can't believe he scooted that far! Or that he was that adventurous! His desire to explore and play is a good thing....it hasn't always been that way! Oh, and Anna said she was watching the whole thing so he wasn't unsupervised while I slept on the couch! And I wouldn't dare lay over if we were home alone! Just so ya know I'm not neglectful!! LOL

Tonight, Barry was rocking Asa to sleep and Asa started pointing at the side table. We were pretty sure he wanted Barry's glass of tea, he loves shaking the ice! But Barry didn't budge. So Asa pointed again and then pushed Barry's hand towards the table!! DUH, Daddy! Barry gave him the puke cup we keep there. Asa pushed Barry's hand and the cup away. Then he pointed and pushed Barry's hand again!! He is definitely getting good at being understood, words or not!!

A great Lord's day!!

We had a wonderful day today! That makes 2 in a row for Asa!! It has been a while since his tummy has played nice all day, much less 2 days! And we haven't changed anything so I'm not sure why it is better.

I've told people recently that I think the GI stuff is the hardest. Sure it is hard to see him so delayed with his development. And I'd love to hear him talk. But something about not being able to feed your kid is horrible. I think as a mother feeding your child is just natural. When it doesn't go so well, I take it kinda personal! If he is fine one day and off the next, my first reaction is "what did I do differently". I'm trying hard to just accept that his tummy has a mind of its own and I have no more control over it than I do his muscles!

We even had sunshine this weekend. It has ended on rain but we got to wear short sleeve shirts for a little while!! Asa would have LOVED it outside today but it was way too windy. He was even a little sweaty yesterday. We may have to break out the cooling vest by March!! I'm so glad I ordered this last year, wish I'd have done it earlier!!

Don't forget that on Tuesday, the 23rd, IHOP will have free pancakes when you make a donation to the Children's Miracle Network. I know we'll be there!! We LOVE pancakes here!!!

Now, bring on the week!!!

Our new toy!

We have a new toy here at the Wilson home!!! I'm so excited because I've been pouring over the classifieds, CL, the sales ads and finally, this week, I just happened upon a super sweet deal!!!



Remember Asa on the treadmill at therapy......






Now he can do the same work at home!!!!!








YAY! He really likes it too. He walked for 5 minutes on Friday and then again this morning. He wanted to keep going this morning but we had things to do!! Can you believe it! I have visions of him walking on his own one day! Oh, and it is good for the rest of us too! And to top it all off, it was a return from Sears and more than 60% off!!! Seriously sweet deal!!

I really have been pouring over the ads because I wanted to be able exercise but with Asa's numerous sensitivities it makes it nearly impossible to just get up and go. We debated about a treadmill or elliptical and personally I wanted an elliptical. But I had a little bit of hope that the gait trainer would fit on the treadmill. And guess what it does! BTW, no need to worry....Barry was holding the gait trainer while I was snapping pictures! Usually I sit behind Asa and help him remember it is "step, step, step" not push or just hang!

The whole theory behind Asa walking on the treadmill is a fairly new therapy. There is proof that the muscle has memories. So if his muscles are "trained" to take steps then when he gets stronger, his muscles will have those memories. This is so exciting for me! I know it seems silly but I can't help it!!

And since I mentioned Asa's sensitivities.....we took Asa to Gracie's basketball tournament today. This was his first time at a basketball game. We swapped around going to the game and staying home keeping Asa because it is so loud and the whistle and the buzzer....not a place he'd usually like. But he proved me wrong today! He did great!!! My Daddy took him out once and Moma again but for the most part he was great!! He even scooted for a minute. I bet he could really book it on that floor if we let him go!

And later we drove through a car wash. Again, loud, unpredictable, bumpy....but he did good. He got a little bothered but didn't get sick. In fact, he hasn't had to be drained at all today! First day in a while!

And Asa got his PT progress report this week. They used to call it a re-eval but now it is a progress report. I thought that made it sound cheerier but what if there is no progress or not much, despite lots of work. Either way, he was graded this week. His gross motor age is now 8 months! At first I was a little disappointed by this. After all, he has made great progress by getting mobile but once I thought about it, I would compare him to an 8 month old. So he is still very, very delayed and still moderately hypotonic but he has made progress. He isn't exactly catching up but still making ground. Inchstones maybe but hard earned inchstones!



And this last pic is just because!!! Asa may not eat but he loves him some McD's!!!! He played with this fry container and straw all afternoon!!! Gives me ideas for next Christmas!! :)

Why inchstones?

Have I explained the meaning behind our blog name?

A child's early life is usually measured in milestones. Babbling, cooing, eating solids, sitting, crawling, walking, teething, talking, sharing, potty training....the list could go on forever. If you have kids I'm sure you have a nice little book that has the dates of when your little one accomplished these skills.

It is also I check list for the doctors. It helps them (and you, if you are honest) know when things aren't going as planned. But what happens if your child doesn't hit these milestones. What if at 2 months there is no head control or eye contact. Or at 4 months they still don't hold a rattle or smile. Or at 6 months is no where near rolling over. Or 9 months won't eat a bottle, much less solids. Or at 1 they are just checking off the 2 month skill of head control. Or if at 18 months, just getting the groove of sitting alone. Or if you never hear a babble, coo or "moma". That, my friends, is the land of developmental delay. That is our world.

And to stare into the face of sweet kids who just aren't hitting those milestone can be depressing and worrying. You can obsess about whether or not you'll ever see those milestones come to pass. The baby book would be empty, no dates to fill in. Just empty space. Blank spaces just driving you crazy! Not that I speak from experience or anything!!

So you start to look closer. And you realize that your little one isn't sitting up but he has finally gotten head control. And maybe you still don't hear "moma" or even "mamamama" but he looks your direction when the word is mentioned. And later on he can sign "moma"! And sure he may not be walking, and yes, he is nearly 2 1/2, but he is a bottom scooting wonder!! Those are inchstones!! Not listed in any baby book. Not on any pediatricians check list. Not talked about in the aisles of Target with other new momas. In fact, they are barely noticed in the "real" world. Overlooked, unimportant, not noticed!! BUT NOT HERE!!!

Here, they are recongized, celebrated, videoed, photographed, talked about, blogged about, Facebooked about!!!! We all get so excited here! When Asa started scooting, we'd all sit around on the kitchen floor trying to get him scoot. When he started waving bye,we'd leave a room just to watch him wave. When it seems he is on the verge of an inchstone, the conversation stops and waits. Why not celebrate these inchstones? It is just so obvious with Asa but we should have this attitude with all things. The simple things are sometimes the most beautiful.

My online friend, Janis, also celebrates inchstones. Check out her blog from today. There are lots of us who celebrate the inchstones. I'm so thankful these awesome momas pulled me out of the world of missed milestones and into the world of celebrating inchstones!!!

Our mito friends!

I wasn't going to post today....it has been an emotional day! But then I saw this update on the Mito What? 5K blog and I had to share it with you!

This is our friend, Bryan. His mom is a God-send to me! And her words are so perfect!! This is just one awesome family....but I'm a little biased!

And I have introduced you to Jack before, way back when I first introduced the run. But in case you need the reminder, here is Jackson's story.

So have you registered yet? If you aren't up for the run, or walk, then you can still register and be there in spirit. The proceeds go to the UMDF!

I bought Asa yet another Superman shirt today. This one has muscles drawn onto the background!! I figure the little guy can use all the help he can get!! Plus it was 50% off the markdown price and I'm a sucker for a good deal!

Fun weekend!

We have had the busiest and most fun weekend.

On Friday, after we picked the kids up from school, we all took some clothes to a consignment sale. Then we played with some ducks at a nearby pond. While we were in the car. Yes, we were in the car and played with ducks! We stopped so Asa could see them but when I opened the van door on his side, the ducks came running!! They though we had food. I really, really wish we had some.....they seemed hungry! We pulled on down to see some geese and the ducks followed us. We were all laughing so hard. Asa though they were funny too. Those ducks even turned around and started following us out of the parking lot. I'm not sure why we all went to the clothes drop off but we had the best time laughing about the ducks! It doesn't take much to entertain this family!!!

Saturday morning we had a children's activity at church. A missionary from Brazil came and spoke. It was so interesting. I can't imagine that kind of life. A life of travel and not being at home. Learning a new language and culture. I'm more of a home body! I'm not sure of my gift but I'm pretty sure God didn't plan on sending me to a foreign country. The kids made bird feeders to bring home and share with our feathered friends.

Saturday afternoon we went for pizza with some friends. We all sat and talked so long. With Asa we usually pick an off time to eat. The restaurants are less busy so it works better. Our family calls it Lupper.....lunch and supper! In the end, Cade and Gracie went to the movies with our new friends! They had so much fun! I'm hoping they behaved!

Sunday we celebrated Cade's birthday with family. He had 2 boys from school spend the night and they played and played!! Gracie hung right in there with them. It is pretty funny because she is only 2 years younger than the boys and we keep saying they may look at her differently when they are Seniors and she is a Sophomore!!

And then last night we got more snow!! I can't remember getting 3 good snows in a single winter, much less 3 in 3 or 4 weeks!!! Thankfully the boys brought there snow gear so they all played outside this morning and this afternoon! Oh, and Anna had a friend over last night! That means 7 kids here!!!

Asa handled all of the activity pretty well. He was really clingy last night. I couldn't put him down at all. He'd just cry and fuss and scoot around behind me! I put him to bed before 7pm knowing he'd probably get up early but it was worth it at that point! And of course the woke up at 5:30 this morning!

He wasn't as clingy this morning. In fact he was back down for a nap when the boys got up. Then this afternoon he scooted into the hallway for Cade, Anna and Gracie's rooms. He scooted to each door but didn't really go in a room. He played and played all by himself for soooo long. Even when we made eye contact, he'd just grin and go right back to playing!

This afternoon Gracie worked on a school project. She had to make a robot out of stuff she found around the house. One thing she used was toilet paper!!! Asa loves toilet paper! He scooted up to the robot and she'd move it. Then he scoot over to it again. Then he started pushing it around because his legs would push the base before he could get his hands on it!! It was so funny!!! I couldn't believe he was trying to "play" with her robot!!

Happy Valentines Day

"For God so loved the world that He gave His one and only Son, that whosoever believes in him shall not perish but have eternal life." John 3:16



"Who shall separate us from the love of Christ? Shall trouble or hardship or persecution or famine or nakedness or danger or sword? No, in all these things we are more than conquerors through Him who loved us. For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord." Romans 8:35, 37-39

Happy Valentines Day!!

Asa update

I haven't been updating about Asa each day. I thought maybe everyone needed a break from hearing about each burp and poop he does each day!!

He had his 6 month PT re-eval on Wednesday. He started meeting a few of the old goals as soon as they came off the printer! Goals like bearing weight without locking his knees. Other goals he still needs lots of work on. Goals like pulling himself forward with his arms while he is on his tummy.

Bottom scooting wasn't on his goals but getting mobile was so he is all good!! And a FYI tip: Bottom scooting on carpet without a diaper can lead to carpet burn in not so fun places!! And puddles too!

We brought home the Theratog suit that Asa has been using during therapy. We'll also be ordering his very own! We were concerned that he might get too hot while wearing it under his clothes. He'd had it on for several hours and was so sleepy while we were grocery shopping. I noticed he was looking especially droopy and checked. Yep, he was getting too hot. In the middle of the check out line I started undressing him and undoing all the velcro!! I'm sure we made a sight but once I got it off, he stared cooling down and was fine.

We are having some trouble with his tummy still, even though we have started the motility med back. Some of it might be because we have gotten loosey, goosey with his feeding. If he won't eat at night before bed then we kinda shrug it off and let him go to bed without a bottle. But many mornings he is very gaggy and spitting up mucus yuck! I don't think we skip meals that often but maybe it makes a difference.

He has also been have several "episodes". I wish I had a medical term or explanation but "episode" will have to do. He reacts to something and gets hot, sweaty, gaggy, pukey, noodley and then will puke or we vent and he'll go to sleep for a few minutes. So far this has happened when he flipped his car over, cried too hard while we went to the bus, feeling uneasy because I was only holding his hands while he stood, some unknown reason while playing in the floor and because of the cool wind while going in a store. All random, different stressors but the same reaction. He doesn't react as badly as he used to and not as often but they seem to have flared up this week. It is hard to know what will set him off. And it is sometimes impossible to spend the time needed to get him through an episode. He'd love to just stop and have calmness and be rocked and doze for a few minutes.

On the plus side, Cade got the new tobyMac CD for his birthday and we have been rockin' out in the minivan!! I looked in the rear view mirror and Asa had his hand in the air waving it around like he was dancing! It was so funny!!!

And he is pointing at stuff like crazy. Sometimes we get to where he was just pointing and he points in a different direction!! I think he is just trying to train me! I usually follow directions pretty well!

Sorry there are no pics tonight! I'll do better next time....promise!

Cade is 9!!

I can't believe our Cade is 9!!

I spent the day with him yesterday and I could really tell he was maturing and getting older. He was so polite and opened doors for me. He was patient while I took care of my errands before we got to his shopping! Of course, I've drilled the door thing into his head since we've had Asa and my hands are usually full!!

I remember when we had the ultrasound that showed he was a boy. Anna was heartbroken and it took a few days for her to really believe she was having a baby brother!

Cade was born at 37 weeks. I was worried the whole time I was pregnant with him. I'd read too many books by kid #2! In the labor room I was concerned he'd be small and need help. The midwife assured me he was Ok and likely 6-7lbs. A few hours later and we found out he was 9lbs. 4oz!!! Not too bad for a 37 weeker....if you still believe that!

He was always all boy! He loved trucks and balls and tools, even as a tiny thing!! He is stil all boy. He loves playing Nerf guns, baseball, exploring the woods, creating "hide outs" and riding his 4 wheeler.



He loved his Anna too! And she loved him, insisting that he move in her room with her at a young 18 months old!! Cade had just turned 2 when Gracie came along!! They have had a love-hate, but mostly love, relationship from the get go! Cade always let Gracie play right along with him and some of her tomboyness may be from her close relationship with him! They are so much alike that they clash.

Cade is pretty jealous of others with Asa. He wants to be the big brother so badly that he smothers Asa, not literally of course, but Asa is a kid who needs his space. Cade loves for Asa to come into his room to sit or play.

And what Asa lacks in eating, Cade makes up for but with sweets!! He has the biggest sweet tooth! He can smell sugar and chocolate from a mile away!

He is also the neat one around here! His room is spotless. Everything has a place and everything in its place! I wish I could be more like him!! I hope this is a habit he never loses!!!

Next year he will be double digits and that is so sad to me! Double digits is nearly a teen. And a teen is nearly high school. High school is right around the corner from college! Aaaack!

I have to go hug my sweet, I mean tough and rugged, birthday boy!!

Can we talk Mito?

Or are ya'll sick of my mito talk. Are you tired of me telling you how mitochondria dysfunction plays a role in cancer, Alzhiemers, Parkinsons, and aging in general.

Are you tired of me telling you how mito affects Asa's GI system? How his cells not making enough energy as affected Asa's muscles.

Are you tired of the links on the side of this blog that points to just a handful of sweet kids whose lives are changed by mito; causing seizures, autistic features, GI dysmotility, hypotonia, failure to thrive, heart problems, lung problems, repeated infections. Causing kids to need feeding tubes, central lines, ports, catherization, oxygen, trachs. Not to mention the families that haul around feeding pumps, special diets, wheel chairs, braces, and O2.

Can you just close this blog and not think of mito anymore? Or do you wake up thinking about it and go to sleep thinking about it? Do you plan your days, nights, weeks, and months around a schedule of a mito kid? Do you avoid certain places and situations because you know your child will get too stessed and have a mito crash? Are you fearful of every bug and germ because it'll halt all progress that you've made in the last few months?

That is our life. That is the life of many mito families. And that is only the tip of the iceberg. We can't forget or turn our brains off.

I don't want you to pity us. We don't pity ourselves...at least not often. We don't pity each other! We ache for each other. We get angry for each other. But not pity. What can you do for us? How can you show that this touches you and you care about a person or family affected by mito?

I'm so glad you asked!!

There is important legislation that is going before the US Senate (S. 2858) and House (H.R. 3502). Your representatives and senators will be in their home offices next week. Will you visit the UMDF Advocacy site and send an email asking for support of this legislation? The email is already typed. It is all done for you! Just insert your name and Asa's name in the appropriate places. It is that easy! Please help us with this "Call to Action"!

But would you like to do something more fun and exciting than sending an email? Would you like to hang out and meet some of these amazing kids and families? How about a 5K or 1 mile fun run?


The Mito What? 5K is March 27 in Millington! There has already been a great turn out but I know it could be better!!! The organizers for this event are amazing! They have gone above and beyond to make this successful. The shirt and goodie bags are gonna be awesome!! And I guarantee you'll have a great time!!

Our family will be doing the 1 mile fun walk. We are going to wear our Superman shirts to support our SuperBaby! Will you please join us on Asa's Super team?! You won't be sorry, I promise!!! Gracie has already informed us she is going to be first and win a trophy in the walk!! Please check out the Mito What? site and register for the race. Then find your self a Superman shirt and join our team!!

"Where is Asa?"

That is a phrase that has been heard around here a lot the last 3 days! Especially today! He is a scooting wonder.

This morning he was in the trashcan that sits beside his highchair. It only has feeding bags and empty Pedisure bottles in it so no fear that he was in something nasty! He was dumping it all out though so Anna moved it into my bedroom. Guess where Asa went!!! Right in there too and continued to pull the bottles out!



Another time we lost him and he was in his room! It is so fun to find him playing alone but it also means we've got to baby-proof!! This scooting and adventuring is such a blessing. We didn't think we'd ever see this with Asa. Not that we weren't trying and praying for it but we were pessimistic, I guess.

Asa tone is so low. He can sit alone but not get into sitting. He can't bear much weight on his arms or for a longer period of time. And mostly he has lacked the desire to explore. He has always been happy to be in one place. Even when he learned to roll over, he didn't explore. He didn't roll with purpose. He didn't use his skill to get anywhere. He simply rolled for necessity. Onto his belly to sleep. Off his belly so he didn't have to work.

I'm excited that Asa learned to scoot but I'm more excited that wants to explore and interact with us and his surroundings! I just hope he doesn't find Cade and Gracie's bedrooms!! Then I'll be in trouble!

We also hung his swing up in the door way today so he could swing. He really likes that and it gave Gracie something to do!!!

We started the motility meds back this weekend. We are seeing increased motility but it from the wrong end! We have had some fun poop stories this weekend but don't worry, I won't share! He has eaten a little better but is still gaggier than I thought he'd be. I'm not sure what is going on.

Asa was so sleepy this afternoon. I changed his diaper and laid him down for a nap. I skipped the relaxing rocking since his eyes were almost closed. WRONG! He started screaming and left him alone to see if he'd calm back down on his own. Well, my smart little Gracie said, "I'd go get him if I were you. He is gonna puke." Sure enough the cry started sounding pukey so I went in and got him up. And yes, he did get sick!!! Isn't Gracie a smart cookie! Too bad she can't read his cues when she is in his face and he is giving her the "back away sista" cry! :)

Super Bowl!!

Barry loves football. No, he LOVES football! In another life, before kids, he watched nearly every. single. game of the season. Now he doesn't get to watch that many. There were a few Sunday's here that football wasn't even on the TV this season, only a few though. I forced Barry to wear this shirt and glasses! I say the dorkier the better! It takes the right attitude to really enjoy a party!!!

I like football. Sort of. I like the highlights. I like the final score. I like the replays. But mostly I'm good if I follow our team....the Titans. That is enough for me!

So this year for the Super Bowl we got invited to a Super Bowl party. Well, party might be an overstatement. It was just us and the hosts. But don't worry we had plenty of food!!! And a huge TV....in HD!!! Really, Barry was in hog heaven. And I had a pretty awesome time too!

We partied it up with a family who has kids the same age some of ours. They've also been around the block with a SN child. They've been doing all of this for a lot longer than us! I feel like I learned so much and it wasn't about football! I hope I was not too noisy and asking too many questions. I don't think I was but I like to talk....a lot!!!

The kids had a great time too. The youngest was chasing Gracie around the table asking for one hug!! I tried to tell her sometimes it is best to just give a little hug....they'll stop asking!!! She didn't listen. Maybe she liked being chased! They decided that Gracie could go back on Sat. and Cade on Sunday! I think we can say they both had a good time!!!

Oh and the Saints won the game! First time they've been to the Super Bowl and then they win!!! WOW!!! They've had a rough road! I'm glad they get to celebrate!!!

This is a Mickey button G-tube. The balloon part is inside Asa's belly and the other part is where we plug in extensions for a feeding. I'm posting this pic for a reason. The balloon normally holds 5ccs of water to keep the button in place. Too little water and the tube will pull out of Asa's stomach. Too much water and the balloon will pop. This is Asa's old tube. I put it in a monkey of Asa's and have used it to show people how to plug and unplug Asa.

Today Cade thought it'd be fun to see how much water the balloon will hold! He used a 5cc syringe and filled it in 5cc increments. Amazingly he filled it 15 times!! That is 75ccs of water before it popped!!!! I don't have pics of how big a "normal" balloon looks because this one exploded and the only other one we have happens to be in Asa's belly at the moment!!!

Before all of the balloon excitement, we went to Gracie's basketball game! This is our first experience with basketball and I love it! It is so much faster than the t-ball and baseball. Gracie is pretty athletic and competitive! She is one of 3 girls on the team but she gives the boys a run for their money!! She was rebounding like crazy today! That makes her DeeDee happy.....she was know for throwing her elbows around in highschool basketball!





And tonight we went to Memphis to meet with our mito group. There are only 4 families but lots of other support was there. There will be a big 5K in Millington on March 27th. It should be great and sounds impressive. I think it deserves a post of it's own, maybe tomorrow.

So how was your Saturday?!?!!

SURPRISE!!

SURPRISE!!! I have another blog!! Did you think I was announcing something else?! Can someone pick my mom up off the floor?! I thought Caring Bridge would be all I needed but it has become a headache. It is so much easier to add pics on here. And I can even load video, but dial up won't let me! That will be changing in the future too, I hope!!

I've been double posting for about a week. The blogs are really cut and pasted so if you are up to date on the CB then you are up to date here! There might be some pics though, if you want to browse them. I hope everyone likes this blog too. If CB is easy for you to get to then please let me know. I don't know why I couldn't keep coping and pasting the posts. My plan is to eventually stop the CB and only use Blogger. So if you want the CB, speak up, please!

Asa will be back on motility meds tomorrow!!! He has been so gaggy and pukey the last few days! We've had to drain and vent him at least once a day. He has gone to bed without his night time cup for the last 3 nights. I hope the med proves to be our "fix". I hope we see the improvement we saw when we first started it. Or this could be just a down turn for a while. Maybe we'll know more tomorrow. The pharmacist said we should notice changes quickly, both good and bad changes.

Speaking of the pharmacist....Anna was with me when we picked up the meds tonight. The pharmacy staff is always glad to see us and we chit chat....alot! We discussed some other meds and issues. I never even had to tell them our name or what we were there for, they just know. I'm grateful for this relationship! As we were leaving though, Anna said "Is it weird that they are, like, your best friend"! I guess we are there alot. I call even more often. I'm grateful that we have them though!

And talking about Anna.....she turned 13 a few weeks ago. I can't believe it! You might expect attitude and moodiness from a 13 year old girl. I know I was dreading it! But I think she has gotten sweeter, if that is even possible! She tells me she loves me at least 5 times a day. If she does snip at us, she quickly apologizes. She gives hugs away freely, even gave me one in Target this afternoon! She is a big help with Asa, even if she won't touch the feeding tube or poopy diapers! And she is soooo funny! She really cracks me up! She is such a blessing and we probably overlook that most of the time. Now, she may flip personalities tomorrow but I know that deep down, she'll always be this precious!

Thursday

Asa has had his first mobile accident today! When we got home this afternoon I sat Asa in the floor and we all went out to get groceries in. Cade and Gracie had made it back in but Anna and I were still at the van. Suddenly we heard a thunk and then crying. Then Cade and Gracie talking and calling me. When we got in Asa had been scooting and pulled on something. He slipped and fell backwards, bumping his head! He was fine but all of the excitement made him get gaggy and pukey and tired.

Then tonight in the kitchen he did the same thing. I guess this is the beginning of many falls we will experience!

At PT today Asa used the Theratog suit again. Everyone comments on how much better Asa looks in it. Not just Asa's therapist but the other therapist in the gym. It is exciting to see them all so happy for him. Nancy had the booklet and she took some measurements to order his own set. There are a few options and she wants to be sure we have it all covered so she wants to ask the OT about it too.

If you can't tell, the suit is actually a back vest, front vest and then hip supports. It all velcros together and is very snug to give him a little support but mostly just pressure. There is also a part that velcros to each side from under the arm to the knee. And then the whole set includes ankle or wrist cuffs and straps. It is very involved but seems to help by giving him a little feed back when his body gets out of line. Asa tends to flop open so we get him into a more closed position and velcro the pieces together. The white tabs in the first pic are the pieces of velcro. Do you remember that Asa has an issue with velcro! He hates the sound!!! He has gotten better but let's just say by the time we are done with him, he'll be completely over it!!! :)


At feeding Asa seemed interested but he is just so hesitant. I asked if I could try to feed him the babyfood. He let me give it to him but if Beth tried, he refused! He had a few bites of oatmeal (a first!) and some babyfood. I asked how therapy got turned into me forcing him to eat while the therapist was the good guy playing with him!! I'm only kidding. It really went well and I'm looking forward to trying more oatmeal tomorrow!!

I also had a chat with another therapist today about mito. She has some biology background and is gonna look up any info she might have. She was hesitant in asking about his diagnosis. I told her I could talk to a brick wall!!!

A day out after the snow!

Yay! The kids go back to school tomorrow!!! Actually, I can't complain today! Gracie went with me and Asa to therapy. When we came home, Cade and Anna had the house clean. They dusted and vacuumed!! It really looked great!!! And I really enjoyed Gracie being with me too! Maybe I'll homeschool.....oh, wait, I'd have to teach not just make them do chores! Nevermind!!!

Asa used his Theratog suit again. He walked on the treadmill with it on. Then he used the same harness and walked around the therapy gym. Nancy said his steps are good. I think they are tiptoes and side steps but she said that is to be expected.

We also chatted about his bottom scooting. I'm hesitant to be too excited because he'll always do what is easiest for him. If it is easier to scoot and he can get where he wants, then why would he try to crawl and walk? Nancy said not to worry so much about it. This is first time Asa is able to want something and go for it. We have noticed that he started pointing at things during the same time he started scooting. Maybe it was just a development boom or maybe he realized he had options!! Nancy even said there is a train of thought that has little bittys like Asa in power chairs!! I can't imagine that. Although he'd be able to chase the big kids!! She wasn't suggesting it for Asa, just that conventional wisdom would say giving them an easy way to move would stop their development and that isn't the case. Interesting....I think I'll do some googling next!

Asa had his applesauce and beenie weenies at supper tonight. He ate alot. We stopped the motility meds so as much as I want to push, I'm not. If he gets sick we need to know if it is from lack of motility or from eating something that disagrees with his tummy. He has been gaggy the last 2 days and even got sick tonight.

I treated Gracie to McD's for lunch today. I plugged Asa's feeding tube up and then sat down to eat. When I looked over at him, he had part of the tube in his mouth chewing on it!!! It was so funny to see Gracie eating her burger and him eating his feeding tube! I got excited thinking maybe he wanted to eat so I pinched off a fry. When I offered it to him he gave me the funniest look! He was happy with what he was having, thank you!!! It was so funny!

I copied this quote from a friends Facebook status a few days ago. I really love it so I thought I'd share it here!

"God doesn't give children with special needs to strong people; He gives children with special needs to ordinary, weak people and then gives them strength. Raising a child with Down syndrome, brain injury, CP or other special needs doesn't TAKE a special family, it MAKES a special family."

This afternoon Gracie was laying in the floor watching cartoons. Asa was sitting beside her. I told her to lay him down and he might go to sleep. He resisted in the biggest way when I tried to rock him a half hour earlier. So Gracie laid him down and he did go to sleep! She rubbed his hand like he likes and he was out. He didn't sleep long but she was proud of herself for getting him to sleep!! It was adorable to see them laying there too!!!

Asa was a bottom scootin wonder again today!!! Anna moved Asa into the entryway while she played with Gracie. Asa scooted over to the front door and played in the side lights on the door. He loves then and we let him tap them when we come out of his room. But this morning he got there by himself and he sat and sat. He'd tap and then rub it. It was so funny. I don't know how long he was entertained by the front door but it was a long time.

Then when he got bored, he scooted back to the living room. He stopped at the stairs and was interested but didn't stay long. He scooted halfway back to the kitchen when I decided to try the Walking Wings on him. That wasn't successful and as soon as I got them off, he took off scooting again!

And there is no school again tomorrow!! When Anna moved Asa into the entryway this morning it was because she was playing volleyball with Gracie and Asa was squealing at them. Then tonight Cade and Gracie had walkie talkies and Nerf guns chasing each other around inside the house!!! And I feel like I was constantly feeding someone today!! Melt snow, MELT!! :)