Saturday, December 31, 2011
Many of our mito friends have not had such a peaceful year. At this moment 2 little boys are very sick in the hospital. One little boy is home on hospice care and almost didn't make it to Christmas. Many friends spent Christmas or the days leading up to Christmas dealing with major medical issues. There was several, too many, that spent their last year on earth in 2011. Yes, 2011 has been a hard year for the mito community!
It has also been a year with bright spots. There's the new drug trial EPI-743. In 2011 the trial was opened up to many more kids. Several kids whose blogs I follow we're accepted and started the drug. They've all had success, some mild but others great! And none have had bad effects!! It is really very promising! I can only hope and pray that this really turns into a decent treatment for mito patients. They all deserve it!
My prayer is that no matter what 2012 holds for my family, that I have my eyes open for God's plan and that I praise Him in all things!
Thursday, December 29, 2011
Santa brought Asa a handy red recliner. He likes it! I love it!! He hasn't really used it during a sick time but I think he will.
Santa brought Gracie a hunting bow and target. She's been asking for one for 2 years! We don't hunt so she's just using it for target practice. She's pretty good too!
She practiced all day and even packed her own stuff up. My dad put Asa in the wheelbarrow and he happily watched Gracie for a looong time!
Anna got clothes.....lots of clothes! And Cade got an iPod touch. They're just too big for pics and blogging!
I saw this cool idea on Pinterest and knew Asa would love it! Barry's parents got new recliners for Christmas and Asa got a happy box! :-)
He even talked my mom and dad into playing in his house. Moma would try to sit up and talk to me and Asa would push her back down. Daddy helped him make it even more festive and Asa was trying to wrap the lights around himself!
Asa loves lights and I bought a kit that has adapters for 3 outlets and a remote. The remote turns on or off whatever is plugged into outlet. We plugged in a lighted angel in one, a string of lights in one and a hanging string of lights in the 3rd. Asa could turn on and off random lights and he LOVED it! He would crack up when he made it work. It was adorable! Then he lost the remote! We looked in every nook and cranny and dug in the garbage but it is nowhere! Unless he put it in a gift bag under the tree and we didn't notice. I still haven't given up all hope but it is looking like its gone!
Asa also got a Hot Wheels Wall Tracks. Its a Hot Wheel set that attaches to the wall. The first time I hung it too high. it was made for a stander. I had to adapt it since Asa is a sitter. He loves it! I mean he is laughing eveytime and will play for 15 minutes at a time....and alone! He even put a ball in it all by himself. Pretty creative! Enjoy!
Saturday, December 24, 2011
I sit here with 1 hour left before we leave Christmas Eve for Christmas Day. Cade and Gracie asked to go to bed at 9pm. At 10:30 I got up to get "Santa" ready and found Gracie sitting on the stairs! After a pep talk (and a tiny dose of benedryl) she headed back to bed. Her alarm clock is set to go off at 5am. Not because I want them up that early but so they don't come downstairs until 5am!
We had a great Christmas Eve together. Gracie and I made cookies this morning. After they cooled all the kids decorated while Chrisymas music played. Anna, Cade and Gracie decorated while Asa ate broken cookies and licked icing off the spreaders when they finished with them. I cooked at the stove and Barry watched football. My heart was full!
We ate supper and opened gifts with Barry's family. I can't even tell you how good Asa did! It gets noisey and busy and over stimulating but Asa was awesome! He had a few,moments of clinginess but he settled again and would play. The kids had a blast, of course!
Tomorrow morning we will have "Santa" and our gifts. Then we'll go to church. We'll have lunch and gifts with my family after that. I'm pretty sure a nap will be in order too!
I'll leave you with the Word we've read numerous times in the last month:
Matthew 1:18-25 ESV
Now the birth of Jesus Christ took place in this way. When his mother Mary had been betrothed to Joseph, before they came together she was found to be with child from the Holy Spirit. And her husband Joseph, being a just man and unwilling to put her to shame, resolved to divorce her quietly. But as he considered these things, behold, an angel of the Lord appeared to him in a dream, saying, "Joseph, son of David, do not fear to take Mary as your wife, for that which is conceived in her is from the Holy Spirit. She will bear a son, and you shall call his name Jesus, for he will save his people from their sins." All this took place to fulfill what the Lord had spoken by the prophet:
"Behold, the virgin shall conceive and bear a son,and they shall call his name Immanuel"
(which means, God with us).
When Joseph woke from sleep, he did as the angel of the Lord commanded him: he took his wife, but knew her not until she had given birth to a son. And he called his name Jesus.
I pray that you feel the love of our Savior during this holiday season and that you see His blessings all around you in the New Year!
Tuesday, December 20, 2011
I've been thinking I would take videos for this post but so far that hasn't happened. I've got to make it a priority though because I don't want to miss these milestones. Asa is doing some great gross motor work lately!
A few days after he started aqua therapy my dad gave him an adult walker and Asa took off with no one holding him!
Last week I put a set of Walking Wings on him and he took off with no one touching him! In case the link doesn't work... its a vest (?) with straps that come up at the shoulders so parents hold the straps while the baby walks without holding hands. This is the first time Asa would walk without holding onto someone. We've had the Walking Wings for a long time but Asa just would not let go of the hands! He'd have a complete panic attack. Now he just toddlers along. He really looks like a puppet. His muscles and joints are loose and he is uncoordinated so he is wobblely as everything but he is not afraid to try! That's a huge step! Now just to get video!
Asa is also cruising along furniture without holding onto our hands. Again, this is new and he is being very brave!
He is also holding one of my hands and using the other to cruise along. Last night he held my hand and cruised along the kitchen using the cabinet handles. This required him to take a few shuffles between handles while only holding one hand! So amazing!
I'm so glad we started the aqua therapy when we did because Asa is having a great surge in gross motor skills and having the extra therapy can only help.
He is also getting quite good at getting off the furniture we put him on. He gets out of bed by himself, off the couch, off the recliner, etc. This has mixed blessings but it is all very welcome!
He is not eating solids still but has increased the Elecare. So much so that he is almost out and a new shipment can't be delivered until next week! I called the GI and they should have sent new orders to the HHC so we can bridge the gap. I just didn't realize how quickly an extra cup here and there would add up. Hopefully they'll deliver some extra tomorrow!
He is also sleeping weird! He is staying up late or waking up early, like 4am early. This morning he was so funny even at 4! He woke up and I went in to lay down with him. He just kept "talking" and making funny hand gestures. His talking is grunts, sighs and hums but it is adorable. He was definately telling me some stories! I wanted to eat him up....for 15 minutes and then I just wanted him to go back to sleep!
I'll add videos to my "to do list" tomorrow!
Monday, December 19, 2011
"Christmas Grinch" is what Anna is calling me. She says this because we have no presents under our tree. I take that back, in October Gracie found things around the house that we'd all like and she wrapped them up for us. Those presents are under there.
I've bought gifts. They are stashed in our bedroom. They know the gifts are in there. I just haven't wrapped them. Initially, I was waiting until I had bought a decent amount so i only had to drag out the paper and tape and bows once or twice. But as I noticed how disturbed the kids were by the naked tree my reasoning changed. Some kids have empty trees all season, only getting gifts when a charity delivers donated gifts. Or maybe there are no donations and the tree stays naked even past Christmas morning. My kids know they have presents ready to go under the tree but many kids are left to wonder.
I think we already keep it pretty simple and meaningful. "Santa" only brings 3 gifts because baby Jesus only got 3 gifts. We also only give 3 gifts. They make their wish lists out carefully! Still, I think there is room to simplify, to appreciate our blessings. There are many times that my own wish list gets out of control but it doesn't take long for me to remember that we have all our "needs" met and then some!
I'll get to the wrapping but not until they have some awareness of the blessings we have. And we are already talking about Christmas being different next year.
Monday, December 12, 2011
Our Christmas tree has a button we step on o turn the lights on. Asa pushes the button with his hands to light the tree. This morning Asa was sitting in the floor in the living room and I told him to turn the tree on. He scooter over to it but then scooter back to where I was curled up in the recliner. He reached up and tried to pull up. Usually I have to hold a hand and give him support while he untangled his legs and feet. This morning though, he grabbed my leg and the chair and pulled up on his own! He has done it 3 times today!! Oh and after he pulled up he turned his back to me, took my hands and pulled me so I'd get up. We walked to the tree where he tried his best to stomp on the button! He never did hit it though because his balance and coordination are awful! :-)
On the GI front, Asa kinda self weaned off foods. He just drinks the Elecare formula now and we offer him bites when we eat. Many times he refuses our offer. We have noticed that when he does eat he gets a rash around his mouth and often has diarrhea even though he is chronic ally constipated! We know he had blood test that showed food allergies. We pulled those foods but didn't really see a change. Now that he pulled the foods from his diet himself it seems like we are noticing a reaction.
I'm so worn out over eating issues. He prefers the formula, its faster and easier and apparently his body likes it better. I'm finding it hard to sit for 30-45 minutes and coax him into eat 80 calories when he needs 280 per meal. Its like a never ending feeding cycle! He loves to have a cup while we are in the van driving to and from school. They offer him food at school and he does eat better for them but they get to give him treats like pudding since he's already had his complete nutrition. Its so hard to push feeding real food! I just play it by ear! We never don't give him food if he wants it but we don't waste time forcing it either.
I feel like I'm leaving it on a downer part of the update but overall things are going well!
Thursday, December 8, 2011
I'm not a huge fan of change. Even good changes take some adjustment and I kinda just like a nice smooth hum kind of life! I'm sure this makes me seem pretty boring and even down right depressing to some of you! That's OK by me though!
Asa's life is kinda like the movie "Groundhog's Day". He goes to bed about the same time, wakes up about the same time, eats the same things at the same time....very routine. When there is a change in the routine I can gaurentee something is stirring. Sometimes its a bad thing like a cold or bug but it can also mean a development surge.
Recently Asa tried to change his sleeping routine. He was horrible going to bed. He was up hours later than his norm. He was restless and stirring in his sleep. He got up this morning before 5 am and from the looks of things he'd been up a while just playing in bed. He has also stopped eating. He will only take his Elecare formula by mouth. He has some interest in food but not an appetite or huge desire for food. He had been doing so well too! :( He is more gaggy and constipated too. Just not a happy tummy.
For a while I watched these signs and waited on the other shoe to drop. He did get a slight stuffy nose but nothing horrible. No other signs of sickness.
But he has had a big surge in some developmental skills! He got out of bed and scooter to his door on Tuesday.....first time in months and only the 3rd time ever. He is much steadier when walking and holding hands. And don't forget about using the adult walker on his own! BTW, he still won't use the kid size walker at school! He stood alone in a chair at the table while he watched it snow. He played outside Saturday as we hung Christmas lights. He rode in his power wheel car, walked in the gait trainer and scooted all over. He even scooted out of the yard and into the taller weeds in the tree line! He was on an adventure! He is doing some really hard work in aqua therapy!
So it seems that while his body is working so hard in these gross motor areas, his body has to give a little in other areas. Its typical mito, actually. Only so much energy to go around! Now I could be wrong and he could wake up in the morning sick but so far so good. This seems to just be one of those happy times of change!
And in another area of change.... after Christmas we will start looking at other school/class placement for Asa. He has really outgrown his class. I love his class, his teachers, his school but just like a moma bird pushes the baby bird out of the nest, its time for his teachers, therapies and us to push him beyond his comfort zone. Please pray that we find the right fit. That we have wisdom to make the right choices. And this is nothing that has to happen now. We just need to reevaluate! I'm praying this is another change that while it may not be fun, will turn out great!!