But first an Asa update! I know several see the FB posts but I haven't gone into details about the ick on the blog mostly because it is just minor stuff.
We've had several totally typical kid illness here with Asa. That in itself is a milestone! First, the day before Christmas Eve, Asa woke up with an awful croupy cough. I am normally the wait and see kind of Moma but with the holidays and then a Sunday coming up, we headed to the walk in clinic. Asa was fine, just an upper respiratory infection. He got 2 doses of steroids and an antibiotic. This worked wonders and he was fine over the holidays. In true antibiotic fashion though, he got a yeast infection in the boy bits area. This landed us in the peds office on Thursday. Got the cream and started treating. On Friday Asa's right eye started looking red and slightly runny. His teachers thought he was fine and he has eye issues occasionally so we carried on with our normal routine. By Saturday afternoon I was getting worried about the weekend and the massive 3-4" snow fall we are predicted so I called his ped back. Thankfully he just called in pink eye drops and we started them on Saturday. By today Asa's eye is most definitely pink eye and I'm glad we have the drops! So he had a cold, the meds gave him a rash, the ped gave him cream, the clinic gave him pink eye and we are treating! How's that for a normal series of childhood illness! Oh, and he is our first kid to have pink eye!
Now on to MY very important message cause it's my blog and I can do what I want to! Hee Hee!
I didn't do a big New Years post and I'm not one for resolutions. Mostly because I lack will power and any promises I make myself end up broken by the next day! I can't give up bread. I won't give up sugar. I'd like to lose 10-15 pounds but only if i don't have to work for it. I'd like to exercise but it is kinda boring. So you see I make a horrible resolution person! At least I know myself well!!!!
I did however think that I'd make some changes this new year. Nothing major or life changing I just think I'll be a little more ME! See, I'm really a shy, quiet person. I hear the grunts and laughs from some of you out there! But the internet is different! You can say or do or anyone on the internet and only you know the true you. For those of you who have only known me as an adult, you know I'm a talker and social. But just ask my Moma or anyone who knows me from way back when and they'll tell you I was a wall flower, an introvert, quiet and NOT outspoken at all! I think that is the deep down REAL me. I think it is also who I'm out growing! I still freak out over public speaking. It wouldn't matter if I was standing up giving you a weather report, my voice gets high pitched, I talk too fast and I'll likely cry! But I'm getting better!!
But first I'm also a Christian! A born again believer! A princess cause my Abba is the King of kings! So this new version of ME is going to try to shake off this shy version of me and let God shine through! I try to live so that God shines in my life. I'd like to think I'm a good person and people notice my faith but it isn't something that comes out of my mouth with ease. Seems I can easily fall back into my shy personality when it comes to this. It is more natural for me to be a quiet observer or give my opinion only when asked. And this is just how Satan wants it and wants me!
Even as I had the thought that I'd like to be a more vocal servant of God, I got a message from a teacher at my kids school. She wanted me to come speak to a women's group at her church! I said "YES" before I gave much thought to the fact that I'd be in front of a group of people. Speaking. About Asa and God. Something so personal. AAACCCCKK! I quickly sent a second message asking how many people would be there! LOL!
I spoke to her friends on Wednesday. It went well. I wasn't nearly as nervous as I thought. And I think I was slightly interesting because they asked questions and made comments. I had practiced several times and had 25 minutes of material but somehow we talked for well over an hour!! I guess my talker came out!!!
I also started a Bible study with some great ladies on the book of Jonah. It is called "Navigating a Life Interrupted"! I think if anything describes my life it would be "interrupted"! And while interruptions are usually not a good thing, when they are God's interruption, they are awesome!!!! So I know that God has put Asa in my life for a purpose. I know He is giving me precious insights and lessons everyday. I know I love seeing God work and I know He wants me to tell others about these lessons! Not that I'm perfect or having anything that will change your life (or WILL it?!!!) but I know that miracles are happening in my life and to sit and be quiet isn't something I want to do!
So along with Asa updates or our fun family adventures, I'll be sharing some testimony of God's work in my life! Often times these all go hand in hand! God's pretty great like that!!!!
So what has God done in your life lately that you'd like to share?
Sunday, January 9, 2011
Tuesday, January 4, 2011
Asa's room
I was so happy to move Asa to Cade's old room. But then after a few weeks he stopped sleeping. It was hard to rock him to sleep and then he'd wake up as we put him in the crib. He'd wake up during the night and we'd do the whole process over again. There were many nights that I slept in the recliner with him on top of me and my neck all crooked. And I even tried to sleep on the floor with him but he thought that was play time. I was tired!!!!
I wanted to move Asa to a big bed so that I could at least crawl in with him. If I couldn't sleep in my own bed at least I'd be in a bed! We can't let him cry it out because he ends up puking from crying too much. The only thing worse than not sleeping is cleaning up puke and bedding and not sleeping! With Asa's tone and lack of gross motor skills he can't get out of bed and stand, sit or crawl. He can roll and buck and that really takes him places! Like off the couch, out of the recliner, down the stairs! And there are a ton of special needs beds but they are pricey out of pocket and insurance takes forever. Plus it seems kidda like a lot of effort when we really on need something that will contain him. The SN beds are awesome with adjustable height so parents don't have to bend over and pick up a heavy child. It'd also be handy to have a bed with the head elevated so Asa's reflux is better controlled.
After thinking all our options over and shopping in stores and online I came up with my own solution. It probably wouldn't be a good idea for a kid who is much stronger than Asa but a kid much stronger can probably handle a regular type bed.
So here are some pics!
Asa is smiling behind the paci! He kept scooting in front of me while I was taking pics so I put him on the bed and he was happy. He has also started this silly thing where he moves the paci to one side of his mouth. It reminds me of Popeye and his pipe!
The foot of the bed. His toy shelves fit perfectly along the end. This only works because he doesn't end up at the end of the bed often and he isn't strong enough to turn it over. This would be a bad set up for most any other kid and I'm looking for a shelf to fit here. I'm waiting on all of this organization stuff to go on clearance at Target soon!!
The head of the bed. These are the letters Gracie painted and I hung over the baby bed. I may lower them or find some wall clings that I could hang lower. More likely I just won't worry about it!
The view from the door. I can sneak in and check on him and he can't see me! I can also sneak out when he is going to sleep!! The chest of drawers already served as his changing table and storage and it fit perfectly along the side.
I didn't use a pillow or top sheet or blanket because Asa doesn't use these. He is still mostly a tummy sleeper so pillows scare me. Personally, I can't sleep without covers at night but Asa has a fit when he is covered up. Not to mention it is hard to regulate his temp all bundled up. So far this plan is working perfectly! And the best part is it was all stuff we already had and I only paid $4 for the striped sheet! I'd like to get a new CD player for him. He still uses the lullaby CD we got from the hospital but we've played out 2 CD players! They stop repeating so he wakes up and his music is off. That's when he calls me!
I wanted to move Asa to a big bed so that I could at least crawl in with him. If I couldn't sleep in my own bed at least I'd be in a bed! We can't let him cry it out because he ends up puking from crying too much. The only thing worse than not sleeping is cleaning up puke and bedding and not sleeping! With Asa's tone and lack of gross motor skills he can't get out of bed and stand, sit or crawl. He can roll and buck and that really takes him places! Like off the couch, out of the recliner, down the stairs! And there are a ton of special needs beds but they are pricey out of pocket and insurance takes forever. Plus it seems kidda like a lot of effort when we really on need something that will contain him. The SN beds are awesome with adjustable height so parents don't have to bend over and pick up a heavy child. It'd also be handy to have a bed with the head elevated so Asa's reflux is better controlled.
After thinking all our options over and shopping in stores and online I came up with my own solution. It probably wouldn't be a good idea for a kid who is much stronger than Asa but a kid much stronger can probably handle a regular type bed.
So here are some pics!
Asa is smiling behind the paci! He kept scooting in front of me while I was taking pics so I put him on the bed and he was happy. He has also started this silly thing where he moves the paci to one side of his mouth. It reminds me of Popeye and his pipe!
The foot of the bed. His toy shelves fit perfectly along the end. This only works because he doesn't end up at the end of the bed often and he isn't strong enough to turn it over. This would be a bad set up for most any other kid and I'm looking for a shelf to fit here. I'm waiting on all of this organization stuff to go on clearance at Target soon!!
The head of the bed. These are the letters Gracie painted and I hung over the baby bed. I may lower them or find some wall clings that I could hang lower. More likely I just won't worry about it!
The view from the door. I can sneak in and check on him and he can't see me! I can also sneak out when he is going to sleep!! The chest of drawers already served as his changing table and storage and it fit perfectly along the side.
I didn't use a pillow or top sheet or blanket because Asa doesn't use these. He is still mostly a tummy sleeper so pillows scare me. Personally, I can't sleep without covers at night but Asa has a fit when he is covered up. Not to mention it is hard to regulate his temp all bundled up. So far this plan is working perfectly! And the best part is it was all stuff we already had and I only paid $4 for the striped sheet! I'd like to get a new CD player for him. He still uses the lullaby CD we got from the hospital but we've played out 2 CD players! They stop repeating so he wakes up and his music is off. That's when he calls me!
Saturday, January 1, 2011
Starting the New Year off right
Last night our family rang in the New Year like usual. We watched movies and broke out the sparkling grape juice in our plastic champagne flutes! I bought a big party pack at Target for less the $4 three years ago! It had 20 flutes in it and we still have enough left for next year! Now that is savvy shopping!!! This year we celebrated in the eastern time zone with New York and went to bed! I guess technically we slept in the new year!
Asa started 2011 off with a bang! He got up so happy and playful this morning. He ate scrambled eggs with us for breakfast. We were celebrating how far Asa has come with his eating in 2010. This time last year Asa was totally tube fed. At the beginning of the year we tried to do feeding with a big syringe but soon tired of feeding time being such a chore and completely hands on. Soon we did 4 bolus feeds with a pump. This gave us time to play with food while his belly got full from the pump. If he completely revolted we could let him play while on the pump and we could still get things accomplished. In the spring Asa learned to drink from a straw and a whole new world opened. He started drinking most of his pedisure from a straw cup but would still resist and be tube fed. He could drink juice from a juice box though and this gave him added hydration. Shortly after he turned 3 in October he started accepting more textures and even better, he started asking for food and tastes! Even as a newborn he never seemed get understand hunger pains and he never asked for food! It was like he was finally enjoying eating! In the last month or so Asa learned to sign "more please" to ask for food! I love it every single time he does this!!!!
Tonight my mom cooked the customary New Years food. Cabbage (for money) and black eyed peas (for health) for the next year. She also made a stew to put up for the winter but we had to eat some NOW! Yummy! I made Asa a plate with cabbage, peas, potatoes, a baby carrot and stew. It was more food than he's ever eaten but I wanted him to try it all. He surprised us by eating it all!!! And still asked for "more please"! I gave him a slice of cheese and he finished all of that!!! And cheese is a new food! The eggs this morning gave him an awful tummy ache and I had to suck the food off his tummy. So far he has handled the cheese fine!
I'm just so thankful with how well he is eating! Is it possible that 2011 might be the year we get rid of the tube? I have to say that I LOVE his tube. Odd as it sounds the tube is such a blessing! We can drain his tummy when it doesn't want to work. We can feed him when he is sick and won't eat. We can give meds when he needs them and refuses. Yes, I'm not sure I want to get rid of the tube! I don't want to have to use it but i like having it around! Kinda like the GUN (as opposed to the "gin" that I orignally posted!) I keep under my pillow.....kidding!
Will 2011 be the year Asa walks? I'm really not sure! I hate to be negative but this is his weakest area and he is soooo far behind. He just isn't adventureous enough to strike out on his own even if his body is ready. He just lacks a confidence in his skills.
Will 2011 be the year we hear him say "Moma" and "Daddy"? Wouldn't that be wonderful?!!!! 2010 brought us several helpful signs and for that I'm so grateful!!! This morning we were talking about "friend" and he created his own version! I wouldn't say he used it on his on but with a lot of encouragement he used his version. He has signed "Daddy" a few times too! Mostly we see "more" or "more please" for hungry or thirsty but he will use it for more kisses or tickles. He signs "all done" and "school". He even signed "thank you" to my mom tonight. So 2010 didn't bring us any words but it brought us communication!!! Whether 2011 brings us more signs or more skill with the iPod touch communication apps or, dare we hope, WORDS, we will be grateful and thankful!
I can't say 2010 was bad to us personally. It brought our family ups and downs. Disappointments and celebrations. It sadly brought the mito family the loss of many little mito fighters. Little fighters whose too short life's have taught us much and given us many smiles. I can only pray that 2011 spare us from more of these losses and instead brings a treatment or cure for all those fighting mito so bravely. Could 2011 really be that year? That is my prayer tonight! 2011 would be a great year for a cure, don't you think?!
Asa started 2011 off with a bang! He got up so happy and playful this morning. He ate scrambled eggs with us for breakfast. We were celebrating how far Asa has come with his eating in 2010. This time last year Asa was totally tube fed. At the beginning of the year we tried to do feeding with a big syringe but soon tired of feeding time being such a chore and completely hands on. Soon we did 4 bolus feeds with a pump. This gave us time to play with food while his belly got full from the pump. If he completely revolted we could let him play while on the pump and we could still get things accomplished. In the spring Asa learned to drink from a straw and a whole new world opened. He started drinking most of his pedisure from a straw cup but would still resist and be tube fed. He could drink juice from a juice box though and this gave him added hydration. Shortly after he turned 3 in October he started accepting more textures and even better, he started asking for food and tastes! Even as a newborn he never seemed get understand hunger pains and he never asked for food! It was like he was finally enjoying eating! In the last month or so Asa learned to sign "more please" to ask for food! I love it every single time he does this!!!!
Tonight my mom cooked the customary New Years food. Cabbage (for money) and black eyed peas (for health) for the next year. She also made a stew to put up for the winter but we had to eat some NOW! Yummy! I made Asa a plate with cabbage, peas, potatoes, a baby carrot and stew. It was more food than he's ever eaten but I wanted him to try it all. He surprised us by eating it all!!! And still asked for "more please"! I gave him a slice of cheese and he finished all of that!!! And cheese is a new food! The eggs this morning gave him an awful tummy ache and I had to suck the food off his tummy. So far he has handled the cheese fine!
I'm just so thankful with how well he is eating! Is it possible that 2011 might be the year we get rid of the tube? I have to say that I LOVE his tube. Odd as it sounds the tube is such a blessing! We can drain his tummy when it doesn't want to work. We can feed him when he is sick and won't eat. We can give meds when he needs them and refuses. Yes, I'm not sure I want to get rid of the tube! I don't want to have to use it but i like having it around! Kinda like the GUN (as opposed to the "gin" that I orignally posted!) I keep under my pillow.....kidding!
Will 2011 be the year Asa walks? I'm really not sure! I hate to be negative but this is his weakest area and he is soooo far behind. He just isn't adventureous enough to strike out on his own even if his body is ready. He just lacks a confidence in his skills.
Will 2011 be the year we hear him say "Moma" and "Daddy"? Wouldn't that be wonderful?!!!! 2010 brought us several helpful signs and for that I'm so grateful!!! This morning we were talking about "friend" and he created his own version! I wouldn't say he used it on his on but with a lot of encouragement he used his version. He has signed "Daddy" a few times too! Mostly we see "more" or "more please" for hungry or thirsty but he will use it for more kisses or tickles. He signs "all done" and "school". He even signed "thank you" to my mom tonight. So 2010 didn't bring us any words but it brought us communication!!! Whether 2011 brings us more signs or more skill with the iPod touch communication apps or, dare we hope, WORDS, we will be grateful and thankful!
I can't say 2010 was bad to us personally. It brought our family ups and downs. Disappointments and celebrations. It sadly brought the mito family the loss of many little mito fighters. Little fighters whose too short life's have taught us much and given us many smiles. I can only pray that 2011 spare us from more of these losses and instead brings a treatment or cure for all those fighting mito so bravely. Could 2011 really be that year? That is my prayer tonight! 2011 would be a great year for a cure, don't you think?!
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