Tuesday, February 22, 2011

A little of our weekend....

We had quite a busy weekend! On Saturday we went to our church parking lot to ride bikes, scooters and so Asa could walk in the gait trainer. I wasn't sure how Asa would do in the wide open spaces but he did great!!!! He has only ever taken a dozen or so steps at one time. I have video of 2:22 minutes of him walking and he probably did 3 minutes in all. Too bad that right after I turned the camera off and helped get him back on the pavement, Cade ran by him and scared him. Cade wasn't trying to scare him but Asa completely lost it. He got scared, fell down, cried, clung to me, thrashed around, gagged, screamed and then dozed off. When he woke up he was perky and happy again. I really wish we knew what these episodes are and if we could help him with them. Imagine how far he would have gone if he wasn't so jumpy and scared. Anyway, here is the walking video! I'm so amazed that he is walking and moving but also that he is so straight and tall and you can't tell much but he is grunting and humming and vocalizing! He was soooo happy!

Saturday night we went to our local volunteer fire dept for the annual chili supper and auction. I remember going to this when I was a kid. Yummy food, lots of neighbors and friends and lots of good junk (or treasures if you look!). At the end of the night they opened the bay doors and lots of the kids were hanging out on the fire truck. Makes me wonder how many of these kids will be volunteering on this truck when they are grown up! It was also funny to see all the adults pull out cell phones to get this shot!

On Sunday afternoon we headed behind my parents place to a dry creek the kids like to play in. We had tried the gait trainer earlier and Asa fell and then we started the whole pukey stuff over again! Good times! Anyway by the afternoon he was playful again. We took the push chair my dad made and Asa was trying to push off road. He had fun playing with some sticks with Cade. And it was very windy so Gracie and my dad were flying kites. Asa had a kite that was already broken and he had the best time flinging it around and watching it flap. And yes, the wind is a pretty big stressor for him but lately he has handled it great. We started playing a game where I tell him the wind is going to tickle his hair and he better hold it down. Sometimes he rubs his hair and sometimes he laughs and is fine without rubbing his head.

And since Monday was a holiday the kids were all at home for the day. We had a great, relaxed morning. I did my treadmill training for the Mito-What 5K. Then I threw the baseball and softball with Cade and Gracie. I got a double work out from them! As soon as I had the baseball back to Cade, Gracie had the softball coming my way. I may or may not have thrown a few over their heads just so they'd have to run after them and I could have a breather!

After ball, we had lunch and I laid down with Asa for his nap. Just as he was dozing off I hear the front and back doors opening and closing, opening and closing, banging around. Of course Asa heard this too and would open his eyes. By the time Asa finally dozed off I was ready to have some kid's behinds! Why would they be so loud when they knew Asa was going to sleep?! It didn't take long to find out why they were so loud!

Cade flipped his 4 wheeler over and they were trying to get it out before I got up! Cade was fine and we got the 4 wheeler out and it was fine too! I'm not sure what happened but we had the whole safety talk again and the 4 wheeler is parked for a week.

In all that excitement I completely forgot about Cade's buddy's birthday party! My heart had just started beating at a normal pace when I got a message about the party. I hated I forgot because I happen to like the grown ups involved and Cade was mad because it was a cool laser tag party! Oh, well, I'm just glad my heart was still beating!

After such a busy weekend I was kinda glad we were back on regular schedule today! Until Cade and Gracie missed the bus and I had to shift into high gear to get them to school on time! We made it though and the rest of the day was as expected....well, with only the regular craziness at least!

Friday, February 18, 2011

A little YouTube

Here's a couple of videos that I've posted to YouTube. There is another one I'm working on but it is too long!!! Oh and I aplogize upfront for my loud, red neck voice!! I have a hard time remembering the mic is so close to me! In fact you should just turn your volume OFF from the get go! hehehehe

Asa cruising

Brother fun

Thursday, February 17, 2011

GI appt

Asa had a GI appt yesterday. Once a month a GI or GI nurse practitioner comes from Vandy to a clinic in our local hospital. Saves me a 5 hour round trip drive!!! Our first GI left Vandy and we switched to a female Dr. that I like but I love the NP that comes here! She is soooo down to earth and easy to talk with. She has followed up with questions or issues that we've had to leave hanging at the appt.

I also love our local clinic because Asa started getting weighted there when he was discharged from Vandy with the NG tube at 4 months old. We did weekly weight checks for ever! The sweet nurse even commented yesterday that she remembers the day she got the call from Vandy saying we were coming in to get a baseline weight as we left Vandy. So each time we go it is a little like visiting friends!

And after all those weekly weight checks and weight worries, I'm happy to report that Asa is sitting happily on the growth chart! He is at 40%! We tried so long just to get him to the 3% mark!!! Unfortunately he isn't growing longer and that throws his BMI off! He is 32 lbs and 34 1/2" long. For the last month I've tried to keep him down to 3 cups of pedisure a day plus whatever food he eats during the day, which isn't a ton but some. From now on I'm gonna try even harder! No wonder my back and left shoulder kill me! I've finally got a chunky monkey! Oh, and since he is over 30lbs he had to be weighted on the stand up scale. Except he doesn't stand up! It was so cute to see him sitting down on the scale. I should have taken a picture!

Asa was pretty great the whole appt, especially considering I didn't have a paci for him. We've been trying to keep the paci away unless he is tired, hurting or screaming! There is always one in the car seat though. Or in the seat the car seat sets in . Or in the floor beside the carseat. Or in the diaper bag. Or in my purse or even pocket!! Except yesterday!!! He was fine during the BP check, the weight check, the height check, the waiting. He was really good. Then the dr came in and turned on the sink to wash her hands!

Asa loves water! Like OCD loves water!!! He had a fit wanting in the sink. And that is partly my fault bc I've let him play in the water at appts before bc he is usually naked and getting poked and prodded! This time he was fully clothed and no sticks were coming! No matter to him!!! He set out screaming!!! Really screaming!!! And when I didn't respond he started hitting me and then hitting himself. I had 2 choices, get him naked and stick his hiney in the hand sink (which would only feed his fire!) or just deal with him. I chose the latter and we just talked over his screaming and fit! I do feel bad for the other patients though! This really seems to be a new way of life for Asa and us. I keep writing blogs about it in my head but don't put them on paper. Maybe soon though. No promises though!!!

So the GI appt was great and we go back in 4 months!!! Sure beats weekly weight checks!!

Wednesday, February 16, 2011

Rough week for mito kids

Thanks to this big internet stuff, I've been able to "meet" many mito families and follow their triumps and struggles in the 2 years since Asa's DX. I've seen several kids struggle and fight and overcome sickness and obstacles that I can't imagine. I've witnessed several whose little bodies have fought until they can't fight anymore and they gain healing and peace in the arms of Jesus. I've learned from the strong parents that I feel a connection with even though we've never met in person.

This week has been pretty hard on several mito kids. I asked the question if this was happening more or am I just aware of it more. Obviously the answer is that I'm more aware. There is struggle and heartache all over the place and we usually just walk around with blinders on, not aware of the hurt that surrounds us. I know Asa's condition is so much more stable than lots of kids but even in our situation, I look at people as they go about their daily lives and I wonder if they realize the blessings they have! Do I realize the blessings I've been given?

First, Eithene has been in the hospital for 10 months straight except for a brief 10 days at home. She has numerous struggles and each time they thing they have a handle on things, something else is thrown off. Her family has had to make many, many decisions that are beyond difficult.

And then sweet Cooper, who I've asked prayers for before, is not doing well. He had a transplant last year and after a long, difficult recovery was doing OK and even took his Make A Wish trip in January. Sadly, he had to have another difficult surgery and mito being mito, he had a hard time afterward. His family is still praying and believing in miracles but many of his specialist believe it is time to just take him home and love on him until the infections take Cooper from his earthly home and he goes home to be with Jesus. The things this boy and his family has overcome are inspiring. I know they wouldn't want to be called that though because they are just doing what you do to keep your sweet boy alive!

And sweet little Zach! He has been a fighter too and this time got hit with a big whammy of infections and his little body needed rest and help. He is in the ICU on a vent and with a chest tube. His is doing some better this morning but is still very, very sick.

These are just a few of our mito friends. And I ask prayer for all the mito kids fighting this horrible disease. It affects each person completely differently and that is a huge part of the problem. And these kids don't fight alone. Each child I've mentioned has awesome parents and siblings. They are loved by grandparents and aunts and uncles. They have touched the lives of the therapist and doctors and nurses who work with them. None of us fight alone!

And when I ask for donations for the Mito-What 5K in Millington or the Energy for Life Walkathon in Nashvile, I do so not only for Asa but more importantly for these kids who so desperately need a treatment or cure! How many more kids will have to fight, and ultimately lose, before there is awareness and treatment?

Monday, February 14, 2011

Sunny day!

We finally have some warmer sunny weather around here!! And sunny with 60 degree temps is perfect for Asa!! We spent the morning out in the flowerbeds. I spent an hour (or more!) mutilating a crazy rose bush that won't die! I found it kind of ironic to be in a battle to the death with the symbol of love on Valentine's day! And just so you don't think I'm harboring some kind resentment or anger at love and romance, this rose bush cost $1 from the dead buggy several years ago and it has just grown and taken over everything each summer! It just won't follow the rules! Nothing against true love!!

And while I battled the thorns, Asa happily played, scooted and laughed in the sunshine! He played with the leaves and dirt and sticks. He had the best time!!! At one point I was chopping at a tough root and I was grunting. When I took a breather I noticed Asa had a stick and was grunting while banging the stick on the sidewalk! Was he making fun of me?!

We only came in for lunch and a nap. After we picked Anna up from school it was back outside. Asa wanted us to hold his hands while he walked around some. Then I hung his swing up and he had a great time swinging outside! Oh, if only everyday could be sunny and 60!

And the pic above needs some explanation! Asa was playing and had his paci in his mouth. He found a clump of dirt and picked it up. I was so pround he was touching it even if he was making an awful face. As I was watching so proudly, Asa popped out his paci and stuck the dirt in his mouth!!! GROSS!!! Who'd thought he'd put dirt in his mouth when he will barely put food in his mouth without prompting! He did self feed an applesauce pouch, a few gummies, 2 cheese and cracker, a pinch of shredded cheese and fruit loops today so maybe a little dirt didn't hurt!!

Wednesday, February 9, 2011

Tubie pics

This is Feeding Tube Awareness week and I've seen so many people do a photo journal of their feeding tube experience. We didn't take too many pics before the tube, when Asa was soooo sick, but still I think it is neat to have this sort of journal.

Asa's first feeding tube was a NG tube when he was in the NICU right after he was born. He physically couldn't suck and his blood sugar would drop without eating so they used a NG tube to feeding him while we taught him to suck. He didn't come home on the tube and we hoped this was the last we'd see of a feeding tube!

But it wasn't. Born at 8lbs. 4 oz. he quickly stopped gaining weight and started loosing. I wish we had taken nudey pics at this time because he was a sick boy! You could see his ribs and his legs were just sticks.

Our ped. started paying attention to the weight loss at his 2 month visit. She consulted Vanderbilt and they scheduled an appt. for several months away and recommended stopping breast feeding (heart breaking!) and starting a special formula, Neocate. When Asa still only gained tiny amounts he was brought inpatient for testing and a NG tube. This was Feb. 2008 and Asa was 4 months old and 10 lbs.

The NG tube went in his nose and down to his belly. Barry and I had to learn how to pull it out and put it in the other nostril before we could leave Vandy. Barry was a great learner!

With the NG, Asa did gain weight and perked up. He finally started gaining weight and making eye contact and smiling. Unfortunately he didn't stop puking but he was gaining and eating a little by mouth.

In April 2008, after 2 months on the NG tube (and Easter Sunday) we wanted to try a tube free feeding trial. Asa must have overheard us talking because during the night he pulled the tube out himself! I kept detailed feeding journals of intake and pukes. For a while Asa held his own but then he started on the down hill spiral again. In July 2008 Asa was down to eating 9-12 oz a day! A DAY! He was loosing again and we decided it was time to get the G-tube. He got a Mic-key button in July 2008. BTW, I'm not sure why it is called the Mic-key, it has nothing to do with Mickey Mouse but I certainly think they could make these in fun shapes or colors to pep them up a bit!

Right before surgery! "It's all good", a bit of positive spirit!

Right after surgery. They did it laporscopicly and went in his belly button. They made him a cute little baseball bandage.

We feed him at night for a while and then with a big syringe while we held him. Kinda like this step up we use for meds now.

It was hard to hold him and still have enough hands and the reach required so we eventually got a feeding pump and I wish we'd done it sooner! We could sit him up at the table and be hands free to help him play with food and oral feed. The pump also allowed us to feed on the go. I could just pack the pump in the cute little backpack and take it with us. Then I'd hook Asa up when it was feeding time. So much easier and less stressful!

Eventually Asa started trying to hook himself up! He knows where his tubie is and will point to it if you ask. It is just another part of him, like the belly button, ears, eyes and nose.

And in case you were wondering, you can do anything with a feeding tube that you can do without one! You can swim in a pool, ocean or lake. Asa loves the water!! And the tubie isn't the reason the big kids want him to have his own pool! He likes to skinny dip!! OK, I prefer he skinny dip cause the on and off of swim diapers and trucks is just crazy at your own house!

This is one of my favorite tubie pics!!!

At this point, we don't do much feeding into the feeding tube. We can usually wait him out if he won't eat during a meal time. I'm sure his blood sugar drops but so far it is managable. We use the tube for a couple of meds but sometimes Asa will take those by mouth. What we mainly use the tube for is draining and venting him. He gets so full and miserable because his tummy won't empty so to keep him from puking we drain his stomach contents into a farrell valve bag or a cup. There have been a couple of times we've used the tube for fluids and Pedilyte when he has been sick. With mito it is likely he will dehydrate quickly and that puts more stress on all his body functions so we try to keep him hydrated all the time.

I was so afraid of the tube but it literally saved his life back in Feb. 2008. By the time we got the G-tube in July 2008, it was so save my mind! Feeding your baby should be a fun and enjoyable experience, not a fight to get 9oz a day in him! I'm so thankful for that little tube in his belly!!! If I designed feeding tubes, I'd make them little hearts!

Oh and I added this one because it made me laugh when I came across it! When I say Asa didn't gain head control until after his 1st birthday, I have proof!!!! Who gets a Bumbo as a first birthday gift! Bless him!

I hope this might help explain our tubie story better. If you have any questions about tube feeding then just ask. I think being open and honest is the best way to educate and advocate for tube feeders!

Tuesday, February 8, 2011

Inchstones, inchstones and more inchstones!!!

This has been a pretty exciting few days. In little ways but each little thing is HUGE to me!

Yesterday, I was on the treadmill and Asa had been playing on the couch. After a while he got bored and wanted down. I was trying to tell him to lay down and slide off. He understood what I was telling him but he wasn't about to slide off the couch by himself! Once I got done I helped him down and we did it several other times. We've also worked on it today. He is almost doing it on his own now!!! If he is sitting with me then he will roll over and slide down. If I'm not sitting next to him then he is more hesitant! Still this is progress!! Huge progress! I'm sure I won't be so excited when I can no longer put him in the chair and trust that he'll be there when I turn my back!

He also cruised along the couch 3 times with no one helping him. In fact we weren't even trying to lure him! We were just hanging out with him standing at the couch (inchstone enough that he'd stand up alone!) and then he shuffled over to me! So fun!!!

And....can you believe there is an AND.....Asa has been going from sitting to laying down on his own. He can sit fine but he can't get into or out of sitting alone. So he had been laying down on his own when Gracie taught him a trick! She holds her finger like a gun and says "bang, bang" and he falls over and lays down!!! By the time I got my camera out he was so gigglely that he just wouldn't sit up at all! We were all cracking up!!

And another AND! Asa ate a whole Gerber Entree meal!!! It was mashed potato, gravy and carrots. He can't really handle the chicken so good but I did chop up 2 pieces and he got them down. He starts out really chewing but slows down so much and by the time I call it or he signs "done", he is just rolling the food around! Oh and did I say it took him 2 sittings to finish it? He had part of it at lunch and part at supper. Still it was one less cup of pedisure for the day! 

Hmmmm, that may be all for now. There are other improvements like he is humming and grunting more. Kinda like a conversation I guess. Still no words but he sure thinks he is telling us stories sometimes. 

And he is steadier when we hold his hands to walk him. In fact he will squirm away from our carrying him so he can try to walk! I've got his gait trainer stripped down and I'll have to take a pic of him to show you! 

He is also obsessed with our barstools and the aquarium on the bar! I mean OCD obsessed! So much so that we took the barstools away! Gotta find some cheap ones with backs and sides! He loves sitting up there!!! 

So I guess this has turned into a pretty long celebration! Praise God!!! I've got videos but I can't load them onto YouTube until I get WiFi, so be patient! Of course the videos are 5 minutes of us coaxing Asa or him hanging out and then 5 seconds of his skill! That's ok though!!! They are priceless!!! 

To God be the glory!!!  

Monday, February 7, 2011

Wonderful Friends

Yesterday, I spent most of the day with some wonderful friends. There are 4 mito families in our area and the Momas try to get together every couple of months for a meal and chatting. We mostly talk, if we ate as long as we talk we'd all be big as houses!! We started out meeting for supper or a late lunch but we'd stay until bedtime so we started meeting for an early lunch. And still, we talk until until the hubbies have to call looking for us. Yesterday, we met for breakfast so I could be back earlier. And still, I had to drag myself away at 3pm, despite meeting at 9:30am!! By the time we paid, our tickets had been kicked out of the system! Now just so you don't pity the restaurant we choose, there was plenty of available tables all day and we tipped our waitress well! I figure she is probably thankful that she got the same tip and only had to refill our water glasses a few times.

You may wonder what we really have to talk about for that long. We do have tons of medical talk but we also have regular talk. We shared tips on hotels in Houston, how to get nursing or the diapers we need, different therapies and meds, specialist but also talked about school and homework, cooking and hubbies. I've always thought being a stay at home mom is kinda isolating but being a sn mom is even more isolating! I'm so thankful that I've got this great, funny, smart, fighting group of women to give me confidence and cheer me on!

And one of these awesome families is the Culley family!! They are from Millington. Emily and John have 3 kids and their youngest has a form of mito called Leigh's. I don't think many would argue that it is a devestating, severe form of mito. But Jackson's family is so amazing! They fight, advocate and work their hineys off to get the best care and info and help for Jackson! Last year they held the 1st Annual Mito-What? 5K in honor of Jackson. The proceeds of the race went to the UMDF. Nearly $20,000!!!! How amazing is that! Just one family touching the lives of others, spurring some wonderful ladies to organize this run and more than 500 runners, walkers, families and voluteers turning out to raise money to find a cure for Jackson and Asa and Bryan and Emma!

And it is that time again! The 2nd Annual Jackson Culley Mito-What? 5K will be on March 26 in Millington TN. If you are local and a runner, this is one well organized run that you'll want to do over and over. If you aren't a runner but want to come with our family to walk and raise money then we'd love to have you! If you can't come but want to be part of the amazing day then you can sponsor me as a Mito Hero!! I need 15 friends to donate $10! That's the price of one lunch out!

And the sooner you register the better! Only the first 200 are guaranteed a shirt. And the Mito Hero money needs to be collected by March 1st! That's 2 weeks away!!! Really just 2 weeks!!!! I'm printing and mailing our registration in this week! You can also register online! It's just when you do it X5 that processing fee adds up!

So if you choose to participate you have several options!

1. You can register and run or walk with us on March 26 in Millington.
2. You can help me be a Mito Hero by sponsoring me for just $10.
3. You can share with all your friends and family. Maybe they'd like to compete or walk with us. Or maybe they'd just like to help out a Mito Hero.
4. If you are a business and want to be a sponsor there is plenty of room for that too.

In all cases, go to the Mito-What? 5K blog for info and registration. The registation link is on the upper right hand side. I know Asa, Jackson, Bryan and Emma would appreciate you standing up for them! And so would their Moma's because despite our marathon breakfast we didn't cure mito or even develop a treatment! Who knows though, with your help we will be one step closer!!

Sunday, February 6, 2011

Feeding Tube Awareness Week

Today is the first day of Feeding Tube Awareness week! Who knew there was such a thing! I wanted to share this with you because before Asa, I had never seen a feeding tube before.

It just so happens that this week in February 2008, we were inpatient at Vandy. Asa was 4 months old and we had finally gotten someone pay attention and check Asa out. Asa was not growing despite our changing some things so we were admitted and a NG tube was inserted. An NG tube goes in the nose and down to the tummy. After several months of this we tried to be tube free but Asa still wouldn't eat and grow so in July 2008, Asa had surgery and a G-tube was inserted into his belly. He still has this today except we don't use it for daily feeds now. Now we use it to drain his belly and to give meds and an occasional feeding.

My how that little tube has saved us! It literally saved his life when he was so tiny and starving. It has saved us from going inpatient several times by allowing us to keep Asa hydrated when he is sick. It has saved my sanity when I have fought with Asa to eat! As weird as it is, I love that tube!! And I love my tubie boy! As you can see, Asa loves his tubie too!