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: http://www.youtube.com/watch?v=Obj-ntX65yI&feature=youtube_gdata_player

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?!

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!!!

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!