It is time to celebrate some inchstones, some one say milestones even!
For the first time ever Asa ate oatmeal in feeding therapy on Tuesday. Then again at home on Wednesday, Thursday and today!!! He had yogurt on Friday. So if you are keeping count, he has eaten a real breakfast for 5 days in a row!!! That is a record! He is also trying new foods at supper at night. He is pretty willing and that alone is shouting worthy!!
In other eating news, he likes sweet tea! I know, shocking right! Who doesn't like sweet tea. I actually used tea as a bribe on Friday! He needed a diaper change while we were in Target. He hates those wall things and in normal circumstances I take him back out and change him in the van. Friday however, the van would have been boiling so we headed to the hidden, family bathroom in Target. He started freaking out when I laid him on the wall changing station. I reasoned with him though and promised my tea if he'd lay still and let me change him. I may have chanted "you can have Moma's tea" in a slow calming voice the whole time I was changing him. Hey, whatever works!! He did great and had my tea sucked down by the time I cleaned up, washed my hands and got the buggy out of the bathroom! So I will never leave the house without gallons of sweet tea to use as various bribes! I should remember to put that in his IEP!!
And being able to reason with Asa is huge too!!! Since he doesn't talk or sign I think I treat him much like a baby. He is dirty so I get him up from playing and change him. He needs to be fed so I sit him in his chair and fed him. He needs to get dressed so I put clothes on him. The last few weeks though I've been asking his opinion and giving him choices. I give a choice of what to eat. I hold up two shirts and let him pick. This may sound simple but it has helped his fits! There are tons of little examples but the point is this boy has opinions and ideas and plans and he needs to be heard, with or without words!!
Speaking of fits and freaking out, he hasn't gotten startled to the point of puking in a while either. Really, how do you go from 1 or 2 a day to none in a week! I almost set him off though and I really should have known better! We were killing time in the toy store one day. As soon as we walked in I spotted some cute, fuzzy rocking horses on the floor. Now anyone who has followed us for very long knows that Asa has major sensory issues to fuzzy things and doesn't have good balance! So you'd think his own mother would have at least thought twice before she plunked him out of the buggy and onto the rocking horse! He screeched like I've never heard before!! And I was holding onto him, imagine if I'd let him go to sit alone!!! I spent the rest of the afternoon trying to calm him and keep him from puking!!
He has also started giving hugs!!! For a while he has leaned into you when ask for a hug but lately he has been squeezing and patting you! So adorable! I love those tiny squeezes!! He has also starting holding onto my ear when I pick him up. I'm not sure what that is about but my ear is a little sore. He likes to poke at my knuckles on my hands, my elbow and the bones in my hands. Any hard, boney place he picks and pokes. Maybe I have sensory issues too, but this drives me crazy!!
Now for the biggest news!!! Asa had an amazing PT session on Friday! He walked while holding onto the PTs one hand and supporting himself with the other on a low table!!! Thankfully, I had my handy cell phone video and while the quality is not good I put it on Youtube! My first ever Youtube video! Asa first ever one hand walk!!! At one point in the video he lets go and I say "don't let go" and the PT says "yes, let go"!! Can you believe I said that!!! I must be off my game this week!!!
Ok, I tried loading the video on here but something isn't working so here is the link instead!
A huge missing link in his development is that he doesn't support himself with his arms. He doesn't crawl and doesn't bear weight on his arms. I've made him start lifting weights!! He loves to sit behind the treadmill and play. So I put the 2 lbs. dumbbells near him and he lifts them up and onto the treadmill. I'm not sure if this is helping but he has been using him arms to bear weight in different ways. Maybe it helped him be secure enough that he walked holding onto that table at PT.
He ended PT by riding a tricycle! He pushed the top peddle down twice but the bottom foot came off. If it was adapted a little I think he could peddle. He loved it either way!!!
So Asa is eating, making huge progress in PT and reasoning and interacting like never before! This is as close to "normal" as we've ever been!!! While I'm jumping for joy I can't help but be sad too. Each time we have made progress, it hasn't been long until he has had a loss of skills too. 1 step forward, 2 steps back. I guess as long as he keeps gaining I should be grateful but it makes me leery of the forward progress each time. I'll just try to enjoy these new skills all the while praying he doesn't get sick and lose them again.
I've thought alot about why we are seeing such a surge in progress. We did double his CoQ10 on Dr. K's orders. Could this be the reason? Could mega doses of Q10 really be the miracle for certain types of mito? I don't know but it is interesting to see so much overall activity in Asa. Usually he is stronger in one area and the others stay the same or decrease. Not now though! He is amazing me in all areas!!
I mostly think that it is because Asa is surrounded and covered in prayer each day. I believe that God has His powerful, healing, comforting, peace giving hands on Asa. Asa's life, and ours too, are all on God's schedule and plan. Not on mine or the doctors or the therapist. We could try all the medical stuff thrown at us, do all the therapy he could handle or we could afford, see all the specialist and gurus but God is in control of this little boy, of this home, of this family! If tomorrow we are back on the pump, back to the low energy, back to the crabby and needing to be held all day, well, that too will be in God's control. I may not like it as much as I love this surge but I'll rejoice in that too!
Oh and I wanted to end on this funny... Last night I was holding Asa and Barry kissed me on the cheek. Asa teared up and started bawling! It was like his heart was broken. So sweet!!!