Randomness

First, I have to say that I have the best hubby in the whole world! Well, he is at least in the top 10!

We've been planning a mito moms meeting in Memphis for a few weeks now. We settled on this past Saturday as the date. We were all so ready to go...and then came the tornadoes! So we postponed to Sunday afternoon.

Now I know many ladies enjoy a girls day out but our days seem to be different. We are known to show up at a restaurant and spend the next 5 or 6 hours there all the while completely oblivious to the time and any thing around around us! And that held true on Sunday. We met for a "late lunch" at 2pm. I left the restaurant at 8pm!! And I'm sure we had some odd sounding conversations about feeding tubes, seizures, IEPs, supplements (which I'll now refer to as "replacement therapy"), therapies, genetics, EEGs, MRIs and Houston. Seriously, I don't think anyone sat very close to us and maybe that is why!

So all during my marathon lunch Barry tended to the children at home! But that isn't what makes him so awesome cause as my new favorite FB group is called "it isn't called babysitting when they are your own kids"! He is amazing because he did the laundry and cooked them spaghetti for lunch. He had Asa fed and playing when we came in from church. And the best, he doesn't complain when I don't cook!

And still those things don't really make him too extraordinary. Maybe it is that he takes the garbage out. Or he always puts out the new roll of toilet paper, which because of some odd issue he won't allow me to write out on the grocery list. It can only be TP cause no one else buys the stuff!! And I can't remember the last time I had to open a new tube of toothpaste. Aren't these the silliest reasons to be so amazed at Barry?!

He also makes the coffee here. That is mostly for his own survival though. He says I make it so strong that I'm starting to grow hair on my chest! But not only will he make the coffee, on the weekends he'll pour me a cup and start the internet so I can check my email first thing! Now that says love better than diamonds if you ask me!

Plus, he works really hard, does the ball stuff with the kids, acts goofy with them, makes me laugh, changes diapers, cleans puke, washes the van, mows the grass and mostly just has to put up with me!! So I guess all of that combined makes for a pretty awesome guy. And why this has struck me now, I don't know. But these things just keep passing through my mind and I need to put them down and get them out! You know, make room for the REALLY important stuff! :)

Secondly, Barry stayed home from church with Asa because Asa has been so off! He won't nap, he fusses, pitches a fit really, red faced, won't poop, etc. I know that doesn't sound so bad but when it is coupled with a disease that causes low energy and the need to avoid stress, well, there is the problem. Picture your normal 2 1/2 year old without a nap. Now picture that child on steroids! CRAZY! The less he sleeps, the more he needs! The more he needs, the more he fights. And while he is busy resisting sleep, his tummy is throwing in the towel cause it is just too much work to do all this at once! We usually remedy this by giving him some much needed down time and getting back to a good, solid routine and things straighten up. So far this hasn't happened in the 4 days we've tailored just to Asa. He did start pooping better today...even though I really begged him to get it all out yesterday when I was at my marathon lunch!

Tomorrow is a therapy day but maybe he'll be in a better mood for that! SURE! Well, I can hope, right!

Oh and a Gracie story to close. She had a softball game tonight. They did pretty good and had almost tied the score when the other coaches lost it over some calls. Seriously, they got so ugly! Anyway, after the argument and the delay, Gracie's team lost. So in the car we are talking about tempers and tantrums. I called Anna and she tells me that Asa is asleep, at 7pm and not for the night! I scream "get him up!". I go on to loudly tell her he needs to be up, why he needs to be up, how could she let him go to sleep, whoa is me, etc. So I hang up and Gracie said "well, looks like somebody else had a temper tantrum tonight"! HA!! Out of the mouth of babes!! And for the record, the lack of sleep must have finally caught up with Asa cause he still went to bed before 9pm! Poor guy.

Rambles

I feel pressure to have a topic and stick to it. I have a hard time not just rambling on about lots of stuff. Tonight I will ramble!

We had PT today. Asa was in a mood. And it wasn't a compliant one!! He screamed to avoid the mat work. Seriously, he won't even try to get into sitting. You'd think he'd hop up so he could scoot away but nope! He has the skills but it is hard to get them in order so he quits.

He also had speech/feeding. I told his SLP that I was gonna bring my grandmother with me next time. She seems convinced that if we just tried to get Asa to talk then he would. She misses the part where I talk to him all the time and sign and sound out words and babble on like a crazy person. Today was feeding day though, not speech, except funny thing about speech...it is alway on! But back to feeding, his therapist put a cheeto on the tray and some goldfish. And Asa picked up the cheeto!!! He seriously hates cheetos! But he touched it. He even tried to crunch it. You should have seen his face! Total disgust! He fed me a bite. Then while Ms. Jill was feeding him the pudding, she slipped in a bite of cheeto! He didn't gag at all. He didn't like it at all but he didn't gag! I realize 2 year olds eat cheetos all the time but this was a big step for my guy! So guess what I bought at the grocery store...cheetos!

After therapy, not so great. We went to Kohl's so I could look for some shoes, and I'm just now thinking I should have looked for the friendly, understanding worker I met last time I was there! Shucks, I'll have to go back! lol Anyway, while I was looking at shoes I noticed Asa was getting red. It wasn't hot in there so this perplexed me. Then I realized he was pooping! Not good, so I walked away to a secluded spot in the back. While trying to push out, his lunch was pushing up! His belly got sooo bloated the chair buckle was cutting in his stomach. Then he started gagging. I pulled out and hooked up a Farrell bag but it didn't work! Seriously! So we are in the back of the store with a tube and bag hooked up to his belly, I've got a syringe sucking the stomach contents to see if the bag will start working, he is sooo stinky, and since the bag isn't working he is puking and I've got out a puke cup and burp cloth! So are you ready for what happens next....

A worker stops at the next aisle and says, "ya'll doing alright today?"!!! I kid you not! Did she even glance this direction? Heck, who couldn't smell the poop or hear the crying and gagging! Maybe she was security sent to be sure I was hunkered down in the bedding section while shoving jewelery in the stroller! I paused and mentally flipped through the smart aleck, sarcastic comments I had in my mind and then opted for a "pretty good, and how bout you" while I came up for air from the toxic fumes!!! Fun times!

So once I got a handle on things we went to an empty dressing room and chilled for a while. Again, I walk into the dressing room with nothing in my arms, I'm sure security had their eye on me by now! I never got the bag to work so I drained his tummy into the puke cup, changed the diaper and just regrouped. Funny thing about this episode...he didn't crash and sleep like all the other times. He rested and was noodlely but he never went to sleep. Is this progress? Will we see an end to these episodes? One can hope!!

It is only fitting that when I get home this afternoon I find this blog post by someone. I'm not sure how I got to this blog. I don't "know" this person like most of the other blogs I follow. Still she has some good insights. Please read these because we have been hearing nearly all of this too often lately. The Rules of Special Needs Parenting! Kinda fitting for my day!

Tonight we went to Cade's ball game. Well, Asa didn't but I did. Funny how I refer to me as we cause it is rarely me and often we! But, I had a good time at the game. It was a good game, not as good as Tuesday I'm told but good. It was good to see the kids and families from last season. And I'm sure Asa had much more fun here than he'd had at the game!!

Tomorrow night Gracie is having a birthday sleepover. Her first sleepover! She invited 3 girls. That is enough, right! I spent the grocery budget on candy and drinks and pizzas! Well, and the cheetos that I'm sure the girls will eat cause Asa will reject them.

Oh, and I got my new shoes! I haven't had new shoes in 2 years....no puke, poop and meltdown will deter me! I did skip Old Navy though, I have my limits!! :)

One more birthday and sleep deprivation!

First thing first....my Gracie is 7 today! I can't believe it! She told me today, "Moma, your kids are all growing up"! So true. She may be growing up but she is still holding onto some of the sweet little girl stuff. She kept asking for the new Buzz Lightyear with the wings for her birthday. I'm sure she'll outgrow him before her next birthday and she'll wish she'd ask for highheels or makeup! Gracie has loved, LOVED, Toy Story since she was tiny! She has a whole collection of Woodys, Buzzes, a Jessie and a Bullseye. Still, just to keep the memories, I got her the new Buzz. This is the last of the easy years when they want one of each from the toy aisles! It gets harder to buy for them as they get older. But for tonight, I tucked her in bed with a plastic Buzz Lightyear with the flip out wings!

Gracie is the closest thing we have to a nurse or therapist here. She isn't fazed by any of the stuff that goes on with Asa. Or any injury, to anyone, for that matter. She is very interested in the tube changes and diaper messes. She pays attention when she goes to therapy with us or hears us working and she'll do the therapy with Asa on her own. She has gotten him to show off skills that we have worked and worked on!! With Anna's muscle and Gracie's gut, those two wouldn't have a problem with Asa on their own. Gracie is like no other, I promise you that!

She has confidence like I've never seen. She'll say she is the best basketball player, the best softball player, even the best soccer player. I reminded her that she'd never played soccer and she said it didn't matter, once she plays she'll be the best. Confidence! She likes playing PollyPockets and Brats but also loves Power Rangers and army men. She loves her bike and is the best golf cart driver around....not just her words! She was tickled to get tissues, toothbrushes, toothpaste and bandaids as presents. She also happens to have the messiest room in the house and that is saying alot! She also saves her money! Cade and Anna will pool their money to buy a game but Gracie keeps hers. She is splurging if she buys a pack of gum! I love that girl bunches!!

So you remember Sara that took those wonderful photographs of Asa last fall? She is also a talented baker! Oh, and she sews. And I'm sure there are tons more craftiness that I don't know about! I've seen a few of her beautiful cakes and have eaten some great cookies she made. A few weeks ago she made the cutest cookies for a bake sale at the therapy center. So I bought 4 cookies and when Asa wouldn't eat his, I had it. YUMMY!! I liked a baseball she'd made and thought maybe I could make softballs for Gracie's birthday snack at school. Sara kindly gave me the recipe and I actually made cookies and icing!! Seriously, from scratch, like with flour and sugar and butter! Turns out this recipe was so easy! Of course, I only made circles for softballs. I'm sure it all isn't so easy when you have a more complicated design but this was fun! I don't think mine are as good as Sara's but they are tasty. And I kinda obsessed about the exact color of the softball (not exactly yellow but not too much green!). Turns out you can't find stickers or ribbon or anything with softballs on it! Go figure! Anyway, here are my, I mean Gracie's, cookies! The recipe made like 40 cookies. She took some to school and some to church tonight. Oh and one of my pans stuck so really it made closer to 50.

Today was also Asa's ABR hearing test. Dr. K in Houston wanted us to get his hearing tested with a BAERS test. We tried to do it when he was sedated for her recommended MRI/MRS but it didn't work out. So after some searching, I found out we could have a ABR done here in Jackson. He just needed to be sleep deprived at 8am this morning. Then they'd hook up 4 electrodes and measure how well his ears send the signal to his brain. Did you get the part about being sleep deprived at 8am!!!

So we got up at 4:30 this morning. Asa is not a good napper. He likes to be in his bed, in his room, with his music. He is kinda picky like that! So I'd called the ped to got a prescription just to be sure he'd be asleep and not be bothered by the poking and prodding. I got him up early, fed him and gave him the meds when we left. We get to the appt and he was playing and kinda perky! Not acting sleepy at all. YIKES!! But once we got in the dark room and I got him comfy and pulled out Barry's bedtime trick of rubbing his head a certain way, he quickly drifted off. And he stayed asleep. Even through the placing of electrodes, inserting the earplugs and wire, and the testing! He slept perfectly!! And he heard perfectly!!! YAY!! I was a little concerned about this test since he has such a startle but his ears and nerves work. Not sure what happens once the sound hits the brain but the hearing part is A OK!! So another worry put on the back burner for another year or two!! Oh, and the dr. that performed the test knows a little girl with mito! How crazy is that!!

Last night, Anna, Gracie, Asa and I went to a support group meeting that was organized by Asa's EI teacher and her student!! The focus was tube feedings and feeding issues! Asa's OT and his substitute SLP were there. The other speaker was a lady who'd fostered SN infants and kids. She was a wealth of knowledge about tube feedings. And I got to meet and talk to another mother. Her DD doesn't have a tube but has feeding issues and delays. I could have talked for hours but my girls were ready to go! Anna told me on the way to the meeting that I could start a conversation with a tree! HA!! The kids were all so good too! Even Asa. He doesn't usually do well at night. In fact, while typing this he got sick and I had to stop and drain/vent him. He went to sleep and I just put him to bed. This is how our evenings usually go! But last night they were all so good. I've been wanting to meet other parent locally who have SN kids. Now just to work out a time for a chat!

While we were at the meeting, Barry and Cade were at Cade's ball game. They won in extra innings! Sounds like it was an awesome game! Gracie had a game on Monday. They didn't win so much...it was over quickly! Cade has another game tomorrow and Gracie on Friday! I'm telling you this week is crazy busy!

I found Asa a mug with a straw! He loved it! Crazy how much he likes a straw cup!! I love it!! I got this one at Target but I saw another one I liked at Penny's! Can you really ever have too many straw cups?! Kidding, the answer is YES, so I left the one at Penny's and it was 50% off! Aren't you proud of me for showing some restraint even when there is a new skill involved! Funny thing about Penny's. They had a little area set up with the baby clothes. It had summer stuff and a pink Adirondack chair. I got Asa out of his chair and let him try out the pink one! He liked it!! We sat there for 20 mins at least. He was so happy and just chilling out so I let him relax! Too bad it was pink!

Asa's OT tried out a new swing for Asa. He wasn't so impressed at first but we did get several grins from him. I'd just been looking a hammocks at Gander Mountain last week. I guess great minds think alike! HA!