Wednesday, June 29, 2011

My softball star

Gracie has just finished an great season of softball! She has always loved playing and has some natural talent that obviously doesn't come from me! When it came time to sign up for spring ball, she said she didn't want to play though. Being the good mom that I am, I signed her up anyway! Turns out she is glad I did!

This is Gracie's league team. Bless her heart, it seems like every season she is on a team that is in a building year. Most of these girls were new to softball and they only won a few games but they learned and improved soooo much! Next season is their season! I'm really proud of her team and coaches. Each girl just improved every game!

Her great coaches got the girls a trophy at their last game. Isn't that why you play ball, for the cool trophy?!

Gracie really improved this year. The week of her 8th birthday she hit her first home run. And she hit one nearly every game after that! She loved this and would grin from ear to ear. And don't think she needed the boost in confidence. She is quick to tell you that she is the best hitter, best fielder, fastest runner and she can jump tall buildings! And that goes for any sport! She is the best smack talker ever. Again, I don't know where she gets this! hehehehe

Near the end of the season we got word that she made the All Star team! She was so excited. The only problem was the regular season wasn't over yet. That'd mean double practices and double games. Plus Cade plays and Anna and Asa have activities. We had to decline for my sanity. But just after the season ended, the coach called back to see if Gracie could play. And she has loved it!

Yes, I painted my van! Barry and Anna didn't get the "G-softball". It should look like "Go Gracie Go". Oh, well.

Her team came in 3rd in the district, not making it to the state tournament. I'm proud that Gracie learned and held her own with these girls who are older than her.

It was a blast but I don't think any of us are too sad that the season is over!

Don't worry though, Cade's All Star tournament starts July 15th so we aren't completely away from the ball field for another few weeks!

Wednesday, June 22, 2011

Let Summer Begin!

Asa finished up summer therapy today. He won't have therapy again until school starts back in early August. I don't think he's ever had a month off from therapy in his 3 1/2 years! I'm sure we'll stay plenty busy though so no need to worry that he'll get bored!

Asa is still drinking the Elacare! Sometimes even signing "more" after his cup is empty. I'm still trying to get used to mixing formula again. I nursed all the kids mainly because I'm too lazy to wash bottles and mix formula, yet here I am, still doing it!

Asa went to his first All Star game tonight. Well, technically he went on Monday too but I kept him at the van. Tonight I got him out and we sat on the bleachers for the game. Monday I had all the seats laid down, the DVD ready, a picnic planned and a blanket in the shade. And still all Asa did was fight me to go to the fence!!! I decided not to wrestle him it was cooler and only 85 degrees!

He really had a good time. I kept an ice pack behind him in the stroller. He drank water and had a snack. He scooted on the bleachers and the concrete! He played in the dirt and had filthy hands that got onto his dirty face! He had a big time. Gracie's tournaments start on Friday. I hope he is up for a full weekend of ball!

I'm proud of both Cade and Gracie for making All-Stars. I won't lie though. I tried to talk both of them into passing on the games! It's just a lot of practice, a lot of games and a lot of running. It's also a lot of fun but only if they enjoy it and aren't begging to skip practice or whining about the games. So far so good! Neither took the bribe to skip so I guess they mean business! Who passes up the beach for ball?! :)

Oh and if you don't follow on FaceBook....I found a buyer protection plan for the laptop and they tell me that even acts of idiocy is covered! I still won't believe it until I see it! And I never, ever buy those warranties! I was digging in our "junk drawer" when I found the receipt and pamphlet from the office store. I called and told her what I'd done and she said no problem, I'd bought the "premium" package! Now I can't imagine that I bought the premium but that's what the receipt says!!! So I wait on my box to pack up the busted one and cross my fingers it's as good as it seems!

Friday, June 17, 2011

Thanks guys for the comments!!

Thanks guys for the comments!!

Asa drank 3 cups of Elecare today! And it is the vanilla flavored. It actually didn't smell too bad...I didn't taste it though!

Rose-Marie, I was sooo close to blending food when he was tubing. Now that he is eating orally though I'm just trying to make do with our table foods. He just has such a poor bite and tires when chewing. Liquid is definitely easier for him to take in.

Clarrisa, google blended tube feeding and there are a few sites and tons of blogs that offer advice. At the very least I was thinking of tubing babyfoods. Dump in a meat, 2 veggies and a fruit and you've got a healthier meal than most kids eat! :)

As for the Reglan, he has been taking it for a year. We were to start at one dose a day and increase to 3 times if we needed to. We have not increased. I haven't seen any side effects.

Jana, we tried some samples of the Splash. He would not drink the grape! He did ok with the other 2. The GI didn't like using the Splash for his nutrition. She said it lacked some of the nutrients of the Elecare. She did say that we'd use it before we used the tube for feeding.

And for the output... I noticed an improvement the first few days if going non-dairy! He started going on his own with no meds for the first time in forever! They were hard but not nearly as painful it seemed. Today was the first day of Elecare and it was very, very loose. I'm not sure that was really a good thing though.

Sorry if this post was TMI! Lol

Please remember the Moody family in your prayers. The laid little Zach to rest today. And the Hilliard family. Eithene celebrated an early birthday on Monday. They have now stopped all antibiotics and only using comfort meds.

And this weekend is the weekend of the Mito Symposium in Chicago. I wanted to go so badly but we had so many things going on I changed my mind. I do hope my friends who are there are taking thorough notes!!! Hint, hint!

Thursday, June 16, 2011

GI appt

So about the GI appt! Is it dairy, is it not dairy?! Is it reflux, is it not reflux? Is it dysmotility?! And what about the tube he keeps pulling out? Did he loose too much weight?

Let's just say I had a lot of questions for the GI NP! I had more to talk about today with GI than I've had in a while! I'd already emailed back and forth so she knew what was coming!!

And can I just say that I'm so thankful for Ayer's Clinic!! The Vandy docs come down and it saves me 6 hours of drive time! The nurses in the clinic are beyond sweet to Asa since they've seen him for 3 1/2 years now!! He can rule the roost if he wants to!

Anyway back to the appt! Asa has lost 4lbs in the last 6 months. While that doesn't sound like a lot when you take into account that he's supposed to be gaining you can see the problem. He went from 40% on the growth chart down to 4%! wow, nearly FTT again! He did NOT need to be at 40% but 4% is too low!

He actually looks pretty good. He is easier to carry around too. But he has stopped sitting up on his own. And forget about trying to get out of bed or even scooting around. These things aren't good if it's from the lack if good nutrition I can help fix that!

Since he can't have Pedisure because of dairy then we are going to try Elecare orally. He'll have at least 2 cups a day plus all his other foods. Hopefully he will drink it from his straw cup and he'll gain weight. If that happens we'll try to do without the Reglan. Maybe what we thought was dymotility was just an allergy. He never had motility testing done. They just tried it and it did help some. If the Elecare, weight and no Reglan works well then we'll talk about taking the tube out!! Not for at least 6 months though!

I'll start the Elecare tomorrow. I'm praying he will drink it. He doesn't and can't eat enough to sustain him. He needs the Elecare! He'll drink it! Right?!?!

Wednesday, June 15, 2011

Stupid....stupid in love!

I will be blogging from my phone until at least Christmas. It seems that I tried to give the laptop a flying lesson and it failed!

Asa had a GI appt this morning and we were a few minutes late leaving. I had Asa in my left arm, stuff in my left hand and the laptop in my right hand. It was actually a last second decision to even take the laptop. I knew I was gonna have an hour or more in between appts and thought I'd work on some VBS stuff. So at the last second I grabbed the laptop without putting it into the case.

Once at the van I had to lay the laptop on the roof so that I could open the door on Asa's side. I opened the door, emptied my hands and put Asa in his seat. I buckled Asa in, got in myself and took off. It was only after I got a few houses and the laptop fell of did I realize I'd left it on the roof!!The lights still come on but the screen is gone!

Surprisingly I'm not that torn up about it. It was stupid for sure but I'm not having a pity party. We won't be able to replace it but I'm ok with that. How weird is that?!

Now let me tell you why! Asa woke up so happy this morning. He was full of hugs and ready to eat. He was very vocal, doing lots of "aaaaa"'s. He took a bath and played and grinned up at me so happily! Since he was vocal, I'd mimic his "aaa". We had little "aaa" conversations! As I "aaa"ed, I realized it sounded like my "I". I've been trying to get him to sign "I love you" for a while. I kept saying "I love you" when I'd start a mimic "aaa" conversation.

As Asa was sitting on the couch waiting for me to put his clothes on him I started signing it again. And he did it back!!!! Keep in mind I only had 3 minutes to get Asa dressed and into the van for the appt but I said "phewy" to that and videoed his new signing skills!!! Some things are just more important than others!

Here's a link to the video on YouTube:

And honestly if that's not enough to put me on cloud nine, I was over the moon when Asa gave me hugs and kisses as I buckled him in the van. This is VERY different from the normal screaming and screeching he usually does while getting buckled in.

So see, you can tell why my mind wasn't on the laptop. But also why I'm not torn up about the computer! Having those little hands communicate with me was divine! Getting the hugs and kisses that back up the signs is miraculous! And I'm not using those words lightly! I do consider it a gift from God each time Asa shows affection and contact and an awareness of my world! Not everyone is given those blessings. Worse yet is the people who don't know to appreciate those blessings. If only they knew....

So goodbye laptop but hello communication and love!! Ha, communication through technology vs communication with my boy?! Which do you think I'd pick?!

Friday, June 10, 2011

I've had so much I've wanted to blog about but it's been so long that I'll just hit the high points.

First of all, the food allergies! The blood test came back positive for food allergies and negative for environmental allergies. The scratch test came back negative for food allergies and positive for environmental allergies. Despite these misleading results we decided to go a week without diary, soy, tree nuts and peanuts. After a week off we added the foods back. Really just the diary. He never really had nuts anyway.

During our off week things went well. Asa didn't eat enough to feed a fly and lost 2 lbs but other than that.... He was pooping on his own, even if they were little golf balls and difficult, he still did it without meds or screaming. There was much less gagging and no puking! NO puking! I even squished his leg in a grocery cart and he cried and cried but no puking!

So Sunday we added dairy back. A cup or two of Pedisure every day. After a few days Asa puked 30 minutes after drinking a cup of Pedisure. There was no trigger, just a puke. Since then he has been gagging in the morning. He has been ill and a pain. He has puked a couple of times. And he is beyond constipated today. If you were in Walmart this afternoon and heard the screech and screams of a little kid that made your ear drums burst...that was us! I felt so bad for him but what could I do!

Our directions were to withhold the dairy again and then again. See, off one week and on another so we can be certain it is dairy triggering the symptoms or some random trigger. I'm thinking we are NOT starting it again. Of course we are NOT giving him dairy now. Hopefully, we will have that happy tummy back again. We see the GI on the 15th to discuss the weight loss and a plan.

We ordered Asa's wheel chair this week. We've been missing the DME and communicating through phone calls. We have been trialing a Quickie Kidz for a while now and are getting it. I thought we were ordering a new one but today the DME said his understanding was that we were buying the one we are trialing. It was new and hadn't been used so that's fine with me. Just means we get to keep it now and not have to wait. If you haven't seen Asa chair it is the cutest thing ever but it doesn't have a parent handle, like a stroller handle. That means that I have to bend over to push him along when he gets tired or distracted. I requested one of those, a firm back support and a different foot rest. The DME immediately said he had a handle in the store! Good to know now! He put it on today and added a longer seat belt so that we can buckle it from the back since Asa learned to unbuckle! We were trying the new system out in Walmart before the poop attack occured!

In some hopefully pretty awesome news, there is a new announcement in the world of mito. EPI-743 is a drug that's been used in a few cases of mito where death was imminent. Since it is still so early the trials there had to be a known mito mutation to even be considered for the trial. Many mutations are not "documented" as disease causing so this eliminated a large number of people who suffer and could benefit. Once example is Piper. Even though so much of her medical history pointed to mito she didn't have a "known" mutation. She couldn't get the drug and she died. Her doctor is speaking on the reasons to change the rules for compassionate care and has a very touching video on YouTube. It is a bit long but Piper's story is in the last 15 minutes, I think.

So now the FDA is giving EPI-743 Orphan Drug Designation. ODD is reserved for diseases that have fewer than 200,000 people affected in the US. Mito affects 60,000. That is reason #1 to raise awareness for mito. It is highly suspected that many more are affected but only mildly so no one looks for mito. Anyway, with this new designation many more people will be accepted into the trial. It is still a study so there are criteria but I'm hopeful for Asa and others that we know. To be clear, it is NOT a cure but a possible treatment. Only the sickest of the sick have been tested and they haven't had miraculous turn around but they have done better. I'll be email the Dr. for sure but we've been warned to be patient. You can imagine there are many seeking info. By the way, Dr. Koenig in Houston sent us a pretty generic letter stating the info and that our child may be a candidate so we should contact the doctors. Her clinic isn't participating but just like I suspected her clinic got the info before the Vandy dr. did. Or at least she passed it on first. That's why we have a mito specialist!

Ok that catches you up on Asa...mostly. In other family news, Gracie made the All Star team for her 7&8 year old coach pitch league. She is beyond happy and I'm already seeing it'll be a busy summer! Cade also made the All Star team for his 9-10 year old kid pitch league. Yep, that's double the practices for both kids plus tournaments and games in different cities at different times all of June and July! Good times!!! Gracie plays in her first big tournament on Saturday. I'll be excited to see how she does!

Oh and VBS is next week too!!!

Wednesday, June 1, 2011

Pics, please!

Thanks for the support and love about the last post! I'll be short on this one! Hahaha

We took Asa's loaner wheelchair into Target last week. The whole point of the chair was to give him freedom but since this chair doesn't have a parents handle it is impossible to get it across the parking lot in a timely manner. Asa knows to grab the wheels or stick his feet on the wheels to keep from going where you want him to go! Since I had Aana, Cade and Gracie with me I decided to give it a try. The chair fit perfectly in the Target buggy and made for a great supportive seat for him in the buggy.

This is where he went once he discovered his new freedom!!! Just like a man!!

I call this "Feeding the Beast but Keeping the Peace"! Asa LOVES water!!! Loves it! He wants to kick in the pool everytime we come in the back door. He loves the bathtub. He loves the sink! I've been known to sooth him at tough dr appointments by letting him splash in their hand sink. So when the scream and squealing gets to be too much at home I make him a splash pool in the kitchen floor. It keeps him happy for hours but I'm not sure it's a good idea to feed his obsession! Another plus to this plan...if he splashes and scoots enough I get my floors mopped!

Walmart was giving away samples of some green tea. Asa took my cup and sucked it down and the did the same to Anna's! He was shaking holding the little cups and drank with his pinkies up for a long time! And yes, I did buy the tea bags and that's what he drinks at home now!