Monday, May 31, 2010

Being OK

I wasn't going to do a deep post. I was thinking all light and fluffy for a Monday post. Really, I was!

And then I checked in on a message board that I frequent. For the record, if you deal with a child with special needs and feeding tubes and therapies, meds, ect. these parents have a ton of knowledge and if you are in need of a place to vent, they are awesome!! I don't want to post a general link but if you are interested leave a message and I'll send you the link.

Anyway, I checked out the boards and there was an interesting topic being discussed and I found one post that reflected my own thoughts so well. The discussion was spurred by the "probable" diagnosis of one of my long time internet buddies. I'm just saying that many of us who met on a hypotonia message board are now members of a mito message board. Coincidence, I think not! When we first started talking mito for Asa it was like the rug was being pulled out from under me. Then when I felt that I had gotten a grip, we got the diagnosis and it all started again. I remember getting the call and literally shaking while kneeling beside the bed to take notes. But 18 months later I find it much easier to talk about mito. In fact, Anna says I can talk to anyone about it!

Here are some wise thoughts from a wise fellow mito mom:

Having a name for the monster does indeed help.

You're in for a roller coaster - as much as this ends one chapter of the journey, it also marks the beginning of a whole new one... not more or less terrible/scary... but different. You will now spend the coming months learning how to 'be ok' with the fact that things will get worse, and you will not know exactly 'what' is going to get worse until it does... the uncertainty does not get better, but it does get bearable.

You'll learn how to 'be ok' with discussing this horrible disease... you will reach a place where you can quite plainly explain that your child has this condition, and it will get worse, and there is really nothing that can be done (yet!) to stop it... people will be horrified that you can talk about it without being a total mess... (and I promise - with time, you will be able to talk about it without being a total mess!! it takes time, but you will get there).

you'll learn how to 'be ok' with the fact that your child's life (and yours!) is now going to be vastly different than most... and it's just that - not better, not worse, just very very different... you will find joy in things most people dont notice... you will lose sleep over things most people dont even think about... you will cry (both happy and sad tears) over things most people would never comprehend...

You don't know it yet, but your entire world, and everything you thought was important 'before' has been fundamentally changed. Nothing will ever be the same...

But I promise, with time, patience, and support - you and your family will get to a place where its 'ok'... you may not 'beat' mito, but you absolutely will grow from it, in ways you cant even imagine...

Big hugs...

Be kind to yourself... be patient with your spouse - he will likely process all this in a completely different, incompatable way than you, and it will upset you when he muddles through it differently - but its just that - different - no more or less right... allow him to get through it how he needs to, and ask him to allow you to get through it your way... The same goes for all your family...

Be prepared to lose friends. And be prepared to find amazing friends in old 'aquaintences' you never expected. Be prepared to be let down by people you believed would be there no matter what, and be ready to be surprised by the ones you didnt.

Learn how to ask for help - and do it specifically. Come up with a list of things that are difficult when things get bad (laundry, cooking, etc) and ask friends and family to help out in those areas when things are rough... People WANT to help, but they will always come to you and say 'what can i do' and at a crisis point you will not be able to tell them. So tell them ahead of time. Tell them when things are bad you really need someone to come clean the kitchen and throw some laundry in, or deliver a meal or two... help them help you.

These are all the things I wish someone had shared with me when we started this journey - we have had to learn them on the fly instead... we're getting there - but every year brings new challenges, new bombshells, and new lessons... and new joys, and achievements.

It will be 'ok'.

It will never be the same, but it will be 'ok'.

It has to be 'ok'.

I found this to be the same path I took in becoming Ok with Asa's mito and the needs he'll have for the rest of his life. I also try not to look too far into the future. That becomes overwhelming. Maybe some of my OKness is because Asa is doing so well. Maybe I'm in denial about many things. I think that is healthy too though. Heck, if you think about it the chances that any of us will develop some debilitating illness is very likely. Thinking too far in advance about that is depressing too!

But I think by far, my best coping mechanism is my faith and family. We are truly surrounded by so much family that can help out when we need them too. They go to appointments with us. They ask questions and support us. And they brought me up to have the faith that I have!

And faith is definitely how I can be OK with all of this. How can I explain it, I don't know. I just know that there is some greater plan for our family and Asa than him just being sick. I feel I've grown closer to God, while others might grow farther away. I'm not wise enough to know how that happens. I kinda of stopped focusing on it so much. I just trust each day that God has a greater plan that I can't yet see. How it will pan out, I have no idea. Will I someday crumble and not be so trusting? I don't know but I sure hope not!

So if my ability to talk about Asa's special issues is shocking to you, now you know how I can do it. How I can discuss the ways his little body fails him. How I can seemingly accept that he might not live past puberty (although this is an old way of thinking about mito, many kids now live into the teenage years!). Why I don't tear up at the mention of childhood death. I have hope and faith and even a little denial on my side!

And wise Keely blogs about her smart, funny boys here. Thanks for sharing Keely!

Saturday, May 29, 2010


Can I just start this post by saying how much I love you all!! I know so many of you visit here regularly and comment or email. Many visit and laugh, cry and pray right along with us. Some visit to catch up occasionally, reading several posts in a row. And dare I hope that a tiny few wait on the edge of their seat for my next great revelation on kids, marriage, life and WIC! Ok, I'm probably stretching it there but I love you all!! Many of you belong to a little club of special families. Many are family and friends from real life. Some are friends of friends. But you all celebrate right along with our family each time you read a post or comment! Thank you for being here!

This morning there was a little celebration over on Facebook! You see, I posted this picture of Asa that we took this morning!

Pardon the large scale of the picture I'm still trying to figure out how to get the picture from my phone onto the blog! BUT, our hearts were about as huge this morning! I got Asa down from his highchair and was walking him to the living room. I was holding under his arms and he was stepping. When he got to this chair, he turned and put one foot right on the bottom support rail! Then I helped him step up and he stepped the other foot onto the seat!!! He tried to climb into a chair!! He stood holding onto the back of the chair for 10-15 minutes. He'd take little feet shuffles and let go with one hand and try to shake the back of the chair. He had more energy than I have ever seen. Usually he props on something or grips so hard and grunts, refusing to move. But not this morning, he was BUSY! Anna has it on video on my phone but since I have trouble with the picture, you know I don't have the video up! I'm telling you, our whole house stopped and we just watched and laughed right with Asa! He got very tired and I helped him down and he went right back up, so determined! He finally compromised for sitting in the chair at the table!

And yesterday, Gracie, Anna, Asa and I went shopping. We all went into a big dressing room. Gracie was busy with my phone and Asa was in his chair...for a while! Soon he got tired and bored and was fussing. I sat him in the floor and he happily played with the wheels of his chair...for a while. Soon he scooted around the chair and to the door. There was a 12"-18" opening from the floor to the door and Asa leaned over and peered out. He took a few scoots forward and looked again. Then he tucked his head under the door and used it to help scoot himself out from under the door!!! Anna and I were done changing and had just been hanging the clothes up when he started this. We both cracked up!! I quickly rescued Asa, although he cried like I was kidnapping him! This whole scene created an education moment with the lady in charge of the dressing rooms. Turns out her grandson is having some development issues so we chatted. Anna says I can talk to a tree! Asa was none to happy about getting back into his seat after his jail break though!

We got the van ready for our trip next week. Barry worked on the wipers while Anna and I cleaned it out and I vacuumed. Barry was disgusted by the amount of stuff that came out of the van but I LOVE my van! I can't imagine anything else holding all of our stuff! Well, look for yourselves:

Shocking?! There are some blanket in there that we probably won't need for ball games anymore but all of the rest is in the van everyday! And that doesn't include Cade's ball bag and another bag chair! I can't even imagine trying to trade vehicles. When I was shopping for just the right diaper bag I'd take everything out of the old one and put it in the trial one! Can't you see me unload and reload in a car dealership! LOL!

We got this van right before we had Asa. We had a cute, sportier black van with a DVD player but no rear air. Once we got a carrier for Asa, I tried to put it in the van and it wouldn't fit. No worries, I had another carrier and I tried that. It didn't fit. We tried both middle seats and had to have the front seats completely forward and sitting straight up and even then the car seat was wedged in. It was the weirdest thing. We had put a carrier in a 2 door car. We'd had one in another Dodge minivan. We'd have one in a Mercury minivan. I had never had a carrier not fit in a van! I tried several carriers, some I bought and returned and some hand me downs. I was at a loss. So one day I went van shopping. I know, crazy thought since they are only in a carrier for a short time but it was impossible to drive with the steering wheel in you belly, and not safe! So I find this used van, long wheel base, with rear heating and air but no DVD. I bought it that day. Looking back now there is NO way we could have fit into that cute black van now. Asa stayed in a carrier until he was 15 months old and was rear facing until nearly 2. No way Asa's chair would go in. No way I could climb all over it to take care of business with Asa. And there is certainly no way he could have survived without the rear air!

I was wondering today if it wasn't all in God's divine planning for that van to absolutely NOT work from before Asa was born. Man, isn't God great in His perfect wisdom!! Why is it so hard for us to just follow along?!

Friday, May 28, 2010


I'm not a patient person. I've been forced to be since having Asa but still it doesn't come naturally. I've learned that appointments can't be rushed. Tests will take 2 times longer than you think. Development skills won't happen easily. I've learned to wait a lot but it isn't easy.

This week, my patience has been tested daily it seems. I don't mind the waiting and delays when things are still moving, even if it is slooooowly. I didn't mind the hour it took at WIC while they verified info, took blood, talked with the nutritionist. But I did mind the next hour while they sat trying to figure out how to make all the Pedisure vouchers print with the food package. At one point I had the Pedisure vouchers sitting in front of me and I almost grabbed them up and darted out the door. By the end, Asa had a horrible meltdown and got sick. While I was wrestling him and plugging in a drain bag they must have figured the computer system out cause they practically threw the vouchers at me and closed the little window. Think it was the screaming that finally helped see the way! I came home wrapped so tightly that when Gracie didn't do a simple task I asked her to do, I snapped her sweet head off. Granted all I asked her to do was carry in a Target bag and she said she was tired (from watching TV!?) but it didn't warrant me being snappy. She didn't know that I'd spent the last 2 hours wrestling Asa and being pushed to my waiting limits! Like I said, I don't do patience well!!

Then, I've been going round and round with the cell phone company. What should have been a simple request has proved to be anything but! It was all being held up by a vendor I had upgraded with. Finally yesterday, I went charging in, well, as much charging as I could do with Asa in the wheelchair and on the pump, and he surely new he had pushed me past my limits. I had customer service on MY phone and handed the vendor my cell phone! It took 10 seconds for him to read them a code or something and then the ball could get rolling. Really, 10 seconds!! Wonder why he just didn't do this on Monday, Tuesday or Wednesday when I called several times a day! Even after all of that I still had to wait while the next center had the issue on their desk. Thankfully, things sped up and we finally made some headway.

I also tried to make some plans and reservations for our Houston trip. Doing anything with dial up is like watching paint dry! And when I did have some speed, Asa was in dire need of some cuddling or changing or something! By the time I'd get back to my plans, the computer would have kicked me off and I'd have to start all over. Finally on Wednesday morning I got up before 6 so I could have 2 hours to just focus on the trip. It took 3! Thankfully, Asa slept late and I let him!!

And there is the ever present battle with the insurance company. It just seems like such a round and round process. Each request being passed from one department to another. Once I used a case manager or something. I should look up that name! Yeah, I'm sure I still have it laying around!! :)

Thankfully Monday at Vandy went smoothly. There was still plenty of waiting, like the traffic jam on the way up, but mostly it was great! I don't mind waiting like that...I'm not THAT demanding. Unless you talk to Barry!

I'm trying hard to remember all those Bible verses about patience and taking deep breaths and counting to 10! Thankfully, this is Friday and we have very little planned for the weekend. I wish it was a long weekend here but it won't be. That is OK though!

Monday, May 24, 2010

Our new GI

Asa, Moma and I traveled to Vandy today to meet our new GI. Our old one left and while I really liked him and he had such confidence in me, he was reluctant to test and explore our options. Dr. A has already made several changes and I'm excited and hopeful that they will help. I heard for so long that we should just expect him to have issues with reflux, puking, constipation because of the low tone but doing nothing and just accepting it is hard! When do you give up the fight...NEVER!

Anyway, Asa made the trip fine! He was really very funny. He "mmmmmm"ed most of the way up and back! When we came thought thunderstorms and had to turn the wipers on full blast he really cracked up! He tried to eat his toes! He has never done this before! I had a hard time driving cause I wanted to watch him in the rearview mirror!!

So he now weights 29lbs. He has been at this weight for a while and it is 50% on the growth chart so he is nice and solid on the chart! This is the first time he has been this high!! The GI even suggested we hold back on the Pedisure a little!! So glad to hear those words!!! And I have tried this a few times but since he isn't eating orally, it is hard to be sure he is hydrated and blood sugars are good.

But she had a plan for the oral eating and puking too! Barry and I have thought for a long time that Asa's tummy doesn't empty properly. We've never really been able to get anyone to listen to our opinion though. Dr. A is putting Asa on Reglan. Hopefully this will help things flow better and Asa will want to eat more by mouth! Then we will use the tube less!! Music to my ears!!! It will be hard to see him not gain weight or consume as many calories! I think I've been reprogrammed to aim for calories over quantity and now I'll have to readjust! I'm soooo ready though!

The Reglan kinda makes me nervous because it can have some neurological side effects and since we already have neurological issues, it makes me nervous! In fact we avoided it until now. It was suggested before, by another Dr, and I didn't want to try it! Now I'm ready. I think Asa is bigger and we will be able to tell if it is working or if it causes side effects. Before he was just a jumble of issues. Now we seem to have the line untangled a little! Of course, we are praying we see NO side effects!

Asa is only 33in. That doesn't even hit the chart and he has been that way for a while. The first times he measured short, I thought it might be an error. But this has become the norm! Now Barry and I aren't tall, just average so we didn't expect a giant but I have become programmed to be alert to anything that isn't the "norm"!! Dr. A wasn't concerned so I'll just roll with that too!

We will follow up with a nurse practitioner in the clinic in Jackson in a few months. The GIs don't come anymore we really don't have huge needs so we can see them in this clinic and avoid the 5 hour drive!

Ok, now that the GI appt is over I can start planning the Houston appt. I have lost all ability to multitask and can barely accomplish one task at a time! Barry says it is old age! :)

Sunday, May 23, 2010


I don't know how to start this post. I don't really have the words for today. I just sit and reflect but have no voice for it all.

A few weeks ago during Sunday School, I mentioned that we will be taking Asa back to Houston in June. My teacher made a comment or two and that was the end of the conversation. Until the next day! My teacher called and said she'd talked to some people and they wanted to have a benefit for us and wanted to let us know of the date! LOL! A benefit had been mentioned several times since Asa's birth but we always turned it down. We kept thinking we might have some huge need and then we'd need to do a benefit. On this Monday, though, she wouldn't take no for an answer! I'm sure I could have completely resisted but something in her voice, in her spirit, made me say Ok, hesitantly.

What I thought was gonna be a lunch after church soon turned into a lunch after church, a special song service and an invite to several other neighboring churches! I'm not sure I signed up for ALL of this! :)

I've been involved in benefits for others before. It is a time of celebration and the feeling like you are helping. I love being on the working side of this coin. The receiving side is much harder, at least for me! I've felt awkward and needy in the last few weeks. I wasn't given many details and certainly no "job" so I felt a little useless and like I was doing all the taking with no giving. It is an odd feeling! I was so nervous about this day for several weeks.

And then the day was here! It was a little weird for a while. Had this been for someone else, it would have been an awesome party, I thought. Then it hit me! All of these people came for lunch with us, for Asa. All of these wonderful people spent their Sunday afternoon singing with us! All of these families rejoiced, celebrated and worshiped with us!!! People who we have known and loved for our entire lives. People we've only just recently joined with. People who we don't even know. I was blown away.

The lunch was great! I'm not sure what it was like behind the scene but it seemed to go perfectly! The singing was amazing! So much talent! Such a worshipful service. To be joined with so many from other churches, other families, other walks of life and all of us worshiping and being ministered to was awesome. I don't know how I held it together all day! Definitely divine intervention!

When it was all said and done, over $4000 was raised! I know, unbelievable!!! Again, stunned silence. I just keep reading that number over and over again! I don't know what we did to be so blessed by so many.

So many could share our same journey, our same path. We only do what must be done. We only do what any parent would do. And it is not by any of our own strength. I am so blessed to be surrounded by people who understand that faith and trust in a God who is Love is the only way I can do anything I'm thrown into. God has blessed us so much!

Thank you all who participated today! The old friends and family who came. The new friends who showed out! Those who spread the word and brought others! Those who cooked and cleaned and planned the smallest details. Those who sang and shared and let us worship with them! Thank you to EVERYONE! Your presence and prayers are what we desire most! Thank you giving us both!

And the best news is that Asa made it through the whole day without a crash or puking. I can't remember the last time that happened! And we are talking some major stressors was crowded, it was warm, it was loud. It was not his environment but he did great!! If that isn't a testament to God's plan, then I don't know what is!

We did have one slight mishap this morning. As I was putting Asa into the van to go to church, he jerked and hit his forehead on the door. The fact that he had strength enough to jerk either means I'm getting weak or he is getting strong. Anyway, instantly he got a huge bruise and bump on his head! GREAT! But no tears, no crying, no freaking out and puking! Nothing but a nasty bump! WOW!

Tomorrow we go to Vandy for a GI appt. This is a new GI and I hope she has some ideas of how we can stop this puking! I reeeeaaally hope she has some ideas. We can't make any progress in oral feeds unless we stop the my mommy opinion!

Thank you God for such wonderful friends and family! Bless each one as richly as You have blessed our family! May we only let Your light shine through our lives. Amen.

Friday, May 21, 2010

Feeding therapy!!!

Asa rocked at feeding therapy Thursday!!! YAY, finally! First, he had 1/2 a Popsicle. Then he had some Gerber Lil' Crunchies things that were cinnamon flavored. Now just so you understand how great these two things are, let me tell you how feeding therapy usually works!

Asa can tell right away the weeks it is feed therapy not speech therapy! He gets a little nervous and is very, very watchful of everything! Jill and I chit chat a lot and try to not make a big deal of the food. She'll put some food on his tray and try to get him to at least play with it. Sometimes I try to distract him so she can slip in a bite of pudding. Many times I "help" him take a bite by holding the back of his head with one hand and keeping his face forward with the other hand. If you read that as "I hold him down so he will take a bite" you are kinda right. But I rarely have to "hold" it is more of him just feeling my hands on his head and face. Not so much pressure but a security of me being there. And even so, I only "help" with one or two bites. If he still refuses then we move on!

Now you might thing we only have to do this with gross food like broccoli or brussel sprouts. But no, this happens with pudding or even favored foods like applesauce and yogurt. He has aversions nearly each time we offer the food no matter if he eats it at every meal! It is really a mental thing for Asa. If it is a textured food then he really has a reaction!! Although he hasn't gagged in a long time!

So for Jill to "offer" the popsicle and me "helping" a few times, and Asa taking the bites on his own, is great!!! And for the Gerber Lil' Crunchies! Wow that was amazing!! I ate one to show him it was safe. I helped a few times. Then he let me and Jill both feed him a few pieces!! He never self fed it but he was close!!! We were so excited! Funny though, we can't really celebrate out loud because Asa is already so on edge that we have to just keep talking and basically ignoring the fact that Asa is awesome!

When Jill taught Asa to drink from a straw a few weeks ago, it really changed our lives. I know a juice box isn't much for most people but for us it was great!! I told her if she got him to eat popsicles then we'd be on cloud nine!! Easy, fun, normal ways to keep him hydrated! YAY!!!

Oh and add to the mental picture I just painted for you, Cade jabbering away and wanting Asa to try goldfish! I pretty sure he just meant HE wanted the goldfish! That is how it happens at home. I try something for Asa and when it doesn't pass the test, Cade and Gracie get to fight over who finishes it off!

Even after all the great feeding advances, Asa has puked every day for a week or more! Always in the late afternoon or before bed! No matter how good he gets at the eating part, if his GI system isn't working right, it will not matter! We have a GI appt on Monday with a new GI!! Praying she has some answers for this and many other questions!!

Now with all of those food sensory issues in mind, this is how we found Asa when the pump alarmed "DOSE DONE" at the 3pm feeding today!

Usually we insert the extension into the button and twist it to lock it. I think this button has is faulty since it has leaked some from day 1. Either it didn't lock or Asa unlocked it, which would require great OT skills! Whatever happened, Asa sure did have a blast "feeding the table" while no one was watching! He was splashing all in the sticky Pedisure! Notice his foot but on the table too! The boy is flexible! It always amazes me!!

Oh and he went to another ball game tonight! He did great! YAY!!

Wednesday, May 19, 2010

Schools out!

Cade and Gracie are done with school! Cade is now a 4th grader and Gracie will be in the 2nd grade! It is so exciting but so sad too. At awards day today I watched as Cade's group got awards. Many of these kids we've known since Kindergarten. I noticed this year how much older the kids looked. How mature. Like little people, not little kids. I can't believe Gracie's class will change in the same way. And then Asa will be coming along. We won't even discuss Anna and how her classmates have matured! With the makeup and hair, they certainly aren't the same kids from Kindergarten. You see how sad it all is?!

Gracie got 2 awards. One for perfect attendance and the other for straight A's. The all A's award was a big trophy. I could see Cade's mind churning! When it got to Cade's class, he got one award...perfect attendance! He got a trophy but it was small. He argued and argued with me that he had all A's and B's. Now really, with 3 kids getting report cards, 4 times a year, plus the progress reports, I kinda lost count of who had what grades. I know I'm a horrible parent but hey, this brain needed more room and something had to go!

Anyway we got home and I looked at his report card and he was right. He'd had all A's and B's, all year! So I called the school and they checked into it. He now has a trophy waiting for him at school! He has asked me a million times if I would go get it but I told him he could wait until tomorrow. He is a little obsessed about it though!

I didn't rejoice in the glory of summer too long though because I suddenly turned into a short order cook! I've got to quickly come up with a meal time game plan for the summer! Maybe I could talk them all into getting feeding tubes!

Oh and I forgot to tell you about our new OT plan! With Asa starting school and his sensory issues involving sound and crowds, we've decided it'd be good to try to expose him to busy situations in small amounts before school starts. Without realizing it we have seriously adjusted our lives to minimize these busy, loud situations for him. We eat out at odd times to avoid crowds or just do a drive thru. We don't take him to many functions to avoid the noise. We have really sheltered him, which is what you'd do too if your baby puked all over everything each time he freaked out over a crowd or noise!

Anyway, we now need to get him adjusted to these environments. So Mr. Jim suggested we play music at supper or even record the school lunch room noise and play that. I think we could get the same affect by taking him out to restaurants! And not the ones with drive thrus! Jim suggested it'd be a good idea to have his family along to offer OT tips and extra noise! Then Asa has been doing some touch screen computer work. I'm tickled about his abilities already! But how do you adapt that to the home environment? I'm thinking an iPad!!! Right?! So my next goal is to get insurance to cover meals out at restaurants and an iPad! Should be easy, right?!

Tuesday, May 18, 2010

Ball games!

For all of my talk about Asa hating the ball games, he made it 4 hours at the ball park tonight!!! I am in shock! Gracie played at 5:45 and since it was a cooler day I thought I'd try taking Asa. Cade played at 7:30 and I really didn't think we'd make it to his game. I just knew Asa would be done before Gracie's game was over! Ha! Little guy proved me wrong! He was a little needy and jumping during Gracie's game but he sat in his chair the whole time for Cade's game! He had a Smarties sucker and made a huge mess but he was happy. He got a little tired of holding his own sucker so he took my hand and made me hold it! Silly boy!!!

After OT today, we went to Target (of course!). They have Dr. Pepper Icee in the cafe section now so we stopped there first! The guy at the counter asked if Asa wanted a crazy straw. I though he must think the icee is for Asa. I turned him down at first and then he offered again so I accepted. I stuck the crazy straw into Asa's juice box and he was in heaven!!! I am soooo thankful for Asa's ability to drink from a straw. This simple skill has been so handy!!! Oh and all during OT Asa did this happy "mmmmm" sound that he was doing all morning! Even some "mama" and once or twice a "b" in there! His speech therapist loves it when he won't make a sound for her but does all the "chatting" in other therapies!!

We have learned that we have to be careful with this new skill though. Late yesterday I gave Asa a juice box. Then while I was at the PTO meeting Barry gave him a juice box. Then he had a bottle and a half of Pedisure at bedtime! Can you say "STUFFED"!! He was soooo sick when I got home from the meeting. He was also sick this afternoon after school. Another reason I was shocked he made it all night at the park.

Tomorrow Cade and Gracie have awards day! Then they are supposed to go back to school on Friday. I know sooo many kids will be done after awards day! I can't wait. I know they both got a couple of awards. I'm sure I'll keep you posted tomorrow! :)

Monday, May 17, 2010

What a weekend!

I had to go back and read the last post to see where I let off!

Saturday, Cade and Gracie both had early ball games. I had Asa's cooling vest, cooling blanket, feeding pump, fan with water bottle, big umbrella, all the extras he needs, packed up and ready to go by 8am! Then Anna got up and begged me to let her stay home with Asa! It didn't take me long to say OK since they both would be so much happier at home. Those 2 are homebodies!! I'm pretty certain they'd be fine never leaving the house if we let them get away with it!

The games were so much easier without Asa. Since the times overlapped I spent some time going from field to field to check out the action on both teams! Unfortunately, Cade's game was less than stellar so I spent most of the time at Gracie's game! Cade's team lost 14-1 or something! This kid pitch stuff is serious business and I think the boys can let the other pitcher really get inside their heads! Then the self doubt spreads like wildfire around the team!

Gracie's game was really exciting! Her team played better than they ever have. They are a very new team and only a few have played ball before! One little girl is tiny and not a big swinger. When she got a hit and got to second base on errors, you'd thought she'd hit a grand slam by the way we were cheering! Even the ump had a huge grin on his face! It didn't hurt that we were playing a team whose coaches have horrible attitudes! Last time we played them they halted the game for 10 minutes to argue and yell! Really sad for the kids on his team! Gracie's team didn't win but they did so good! And her coaches are great! On yelling or arguing from them!

We got home from the games just in time to pack up and head to a family reunion with Barry's mother's family! There was great food, as always, and the kids had a blast! Asa did so good and he pushed around in the gait trainer. He also scooted around on the table like he owned the place! I think we may have learned something too. I tried giving Asa a cookie and he wouldn't touch it. Then he had on his sunglasses and he finally touched it and played with it! Maybe even the sight of food is gross to him! Would it be weird to feed him while he wears his sunglasses!

It is funny cause we went to a lot of reunions when I was a kid. I dreaded them. I couldn't understand why all these people wanted to get together when I barely knew any of them. Now I'm the one dragging kids to reunions each year! And they really didn't complain but I was looking so forward to it. Sorry Moma and Daddy for all the mouthing over reunions! :)

After the reunion, the kids went swimming! My mom had my brothers 4 boys and they joined in. Then Barry's 2 nephews joined them! Barry commented that there was 10 kids in our little pool and I though he was exaggerating but when I counted it up, he was right! Technically, Asa and Simon were in the baby pool on the deck but still! We said next year we were gonna have an inground pool! And with all 10 kids shoveling they might get it done this year! lol! The kids didn't think that was funny!

Sunday was fun too! Barry and I had the nursery and it was funny watching Asa with the other little girl in there. She is 1 and he does well with her. Not sure how he'll do in school when he is the youngest and delayed! I know, don't start worrying yet!

After church we had lunch at my every Sunday, the woman is a saint!! My dad took the kids to a creek behind the house and I sat on the porch with Asa and Moma. Asa went to sleep and I got to talk and read the paper!! There is no better way to spend a Sunday afternoon!

It was perfect until Daddy brought all 5 kids home covered in water and sand! Oh and Gracie found a fish in a little puddle in the creek so she brought it home and named it Nemo! Great! My cousin just happened to be there and he just happened to have an aquarium and my dad so lovingly clean it up for Gracie. So now we have a creek fish, in an aquarium, in her room! Surprisingly, he made it through the night! She's decide we can let him go in a pond if we buy her a goldfish instead!

So such a busy weekend and the only picture I got was this one! And that is how I felt after this weekend!

Now onto my Monday of calling doctors and insurance. Seems like I spend hours on the phone each Monday starting at 8am!

Friday, May 14, 2010

And so it begins!

Asa and I had a big morning today. Well, it was a biggie for me, Asa seemed clueless! We had a meeting here at home with his early intervention coordinator, his home teacher and a psychologist from the school system!!!

It went pretty well. I got some good info and ideas to think about as we speed towards October and his transition into the school system. Our system is doing some reorganizing and they are considering changing from a half day program to a full day program. And a whole school will be devoted to 3 and 4 year olds, special needs and typical programs. I also found out he'll wear a uniform like the big kids! So I'll be clearance shopping for tiny white polos and khakis!

Maybe I need to back up and explain that right now Asa's therapy is funded by Tennessee Early Intervention. I love all of our people in this group! They work with babies, birth to 3, and then the kids transition to the school system at 3 to get the therapy they need. Insurance only has limited therapy coverage and you'd be surprised to learn we used up Asa's insurance PT before March this year! So in order for Asa to get therapy he'll have to start school in October when he turns 3!!

I have so many mixed feelings about school! Asa really doesn't like other kids too much. His sensory issues make fun, exciting environments scary and overwhelming. I think school will be great if he can be in a smaller class where they can monitor how he is handling things to avoid a huge crash and reboot! I'm also wary of the therapy at school. School therapy is educational therapy. They have to get him ready to learn. They will work on him being able to sit in the chair in his classroom but not really be too concerned about him being able to climb the jungle gym. I'm not sure this will be a big deal in Asa's situation right now, but I know some families have to really fight to get services covered at school. Some school systems are just so poorly funded that there isn't staff or resources to really push for the kids. I never got that vibe today at all but I feel I'll need to be on my toes and ready to advocate if things go that way. I'm not confrontational at all so I think I'd have a hard time doing this. Like I said though, I never got that vibe today. I was so pleased with the meeting!

In August, Asa and I will go to the school and kinda browse around. Then in September we will have another meeting with the teachers and therapist from the school to set goals and make a plan (IEP) for Asa. Right now I kinda depend on Asa's therapist to set the goals. I offer input but I feel like they are the professionals so I listen to them mostly. With the IEP, I'll be offering much more insight and ideas so this makes me nervous. What if I leave something out or make a big deal about nothing. BUT, I'll study up and tackle that issue closer to the date. No need to waste a worry on it now!

I also worry about the full day schedule. I can't even imagine how that will work for Asa. Especially 5 days a week! I have tried to picture it and just can't see it!!! Full days would be great for me though! Think of all the free time I'd have! I already asked about volunteering and they do have a PTO type organization. I'm giving my treasure position at Denmark this year so maybe that will open some volunteer time up for me. Or maybe I'll just take a seat in the corner for a while.

And ya'll know how much I hate change! I love, love, love all of Asa's therapist now! I can't even imagine a better team! I just love the happy, friendly vibe of the therapy center, even the therapist who don't see Asa are soooo nice! I don't want to leave this environment for a drop him off at school thing where I don't know what is going on! That makes me sound like a controlling parent doesn't it?! A helicopter mom! I don't think I am but maybe I am and just don't see it! I just really, really like being in the know! I don't have to run the show, I just want to be invited! What is so bad about that?!

I will, however, be so glad when Cade and Gracie get out of school this year! The last two weeks have been full of field days and picnics and water day. I don't know how our PTO president and vice president managed these last 2 weeks!! And I was really no help! I volunteered so much before Asa but now I just can't. He isn't the kind of kid you just drag around with you. Instead you bend to him! In that way I am looking forward to him starting school. Maybe I can do the field trips and fun days and lunches again. I really do get heartbroken to have to miss these days. It is so much fun and a lot of work, but mostly fun!

Tomorrow Cade has ball pictures at 8am and a game at 9am. Then Gracie has pictures at 9 and a game at 10! Cade will have another game at some point that day we just aren't sure of the time. And Barry's family is having a reunion at lunch. I think our weekends are busier than the week! Maybe we should reverse it all and only go to work and school on the weekends and have the whole week to play! I like that idea better!! :)

Wednesday, May 12, 2010

Playing catch up!

I can't believe I haven't posted since before Mother's Day! And to leave on such a downer post too! Well rest assured that my mood is so much better after a little blog therapy! Seriously, there is so much going on in this little brain of mine that once I get some of the negative thoughts out I feel so much better! I'm sure you all love having to endure the whining and pity parties I can throw! But you guys are always so great! I got several emails from some super moma's who said they are having the same feelings as me. And then several comments on here! Really, you guys are great!! You make a girl feel a lot less lonely and a little less crazy! :)

My Mother's Day was good. I'm not sure why Mother's Day is on Sunday, I think it should be Saturday. We get up early to go to church on Sunday so there goes the plan of sleeping late on Mother's Day. And this year Barry thought it'd be a good idea to join in the Homecoming festivities at church and have lunch there. Sounds great unless you consider that lunch has to be ready by 9:30am, when you leave for church. Bless him, he tried to make it a no stress day but that was a lot of pressure! Barry really did give me a great day though. I had a long nap in the afternoon and he did most of the Asa duty. Asa, on the other hand, got super sick before bed Sunday night and I was sad to see my day go out with him so pukey!! It really takes so much out of him to get sick.

The rest of this week has been busy with stuff. Not sure what exactly but I know I haven't gotten much accomplished and I'm tired so I must be doing something...somewhere. Monday I got some phone calls made. Tuesday was OT. Oh, Asa's OT gave me the name of a lady whose 7 month old was getting a G-tube. He got the mom's permission and my permission and then swapped our numbers. I called her today. The surgery is tomorrow! I hope I helped to calm her fears. She sounded like she was at the point we were at with Asa and just ready to get it over with so they could focus on other issues. Please pray for Lydia's family and doctors tomorrow.

This morning Asa got up at 4 am and then I had a terrible headache. I don't think my day started until after 11am today. Of course, then Asa's routine was off but I think we got it back on track. Hoping he sleeps better tonight. He has some booger of mosquito bites and they may have been bothering him. He doesn't scratch them but they are swollen and warm so they must hurt.

I do realize this must be one of the most boring post ever but I felt bad about leaving off the way I did on the last post! Maybe tomorrow will be more exciting and I'll have something fun to blog about tomorrow! HA!! Exciting and fun don't usually go hand in hand here!

Saturday, May 8, 2010

Just thinking

It is late...after 11pm! That is late for me, I should be in bed. But my mind has been wandering this week. And not really to happy places. Maybe cause Mother's Day has been approaching. Maybe cause Asa's been in a rare mood. Maybe cause we have 2 big appointments in the next month. Who knows but I've been in a funk.

One thing I'm thinking about is this....
Asa has started making an "mmmmm" sound. Not a "ma" sound but just a steady "mmmmm". Kinda like a hum. Sometimes he is loud and singy. Sometimes it is deep and angry. Sometimes it varies. But, I like this new sound. He is usually silent other than grunts or screams so a "mmmmm" is music to my ears.

That is until we went into some stores this week. Asa will "mmmmmm" for a long time. Sometimes I "mmm" right back and we have a conversation. This week I noticed something. At what age do the "cute baby" comments get replaced by stares and then worse avoidance? Right now Asa's "mmm's" are cute and baby like, kinda like babbles. But what will the reaction be when he is 10 and only has "mmmm" or grunts in his vocabulary? What about when he is an adult? Will he be one of the adults out on a shopping trip with an aide and people avoid the aisle or section he is in? Ya'll know what I'm talking about.

What about his chair now? Heck, I even get compliments on it and people wan't one. I bet that won't happen when he is 12 and needs a wheelchair. Or when he is 30 and his head tilts to one side because he doesn't have the strength to sit up straight.

And don't even get me started on diapers and changes!!! I'm certain people aren't so understanding of that.

The point is when a baby is delayed, it can somehow be ok. But when an adult is delayed or disabled we look at them completely differently. I can admit that I did, even do. I was never mean or made fun of a disabled person but it can be uncomfortable. This week I tried to picture the adults I saw as kids, as babies. I see one lady and her grown daughter out often. They probably don't even see me but I wish I could pick the mom's brain a little. Boy, the wisdom she must have!!!

I have also been going through some pictures for a project I'm working on. Pictures of Disney World before Asa was even a thought. Pictures of us in Mammoth Caves while I was 6 months pregnant with Asa. Pictures of the beach from this past summer when Moma and Daddy took the big kids. It just seemed like too much to take Asa and the beach isn't someplace that Asa would love, I don't think.

All of that seems so far away now. A different life. I can't even image trying to plan a vacation anymore. And we have it easy. I know some who travel with a lot more accessories than we have! This just isn't how we thought it'd be when we found out we were expecting again. When is it ever how WE thought it'd be though!!

Maybe it is seeing all the people at the ball park who were pregnant last year. Now they have walkers and toddlers they are chasing around the ball park.

In the special needs world we have it pretty easy. Asa is delayed but healthy. Nothing immediately life threatening. So I can kinda ride on easy street for a while. But then I realize how completely different we are to "normal" families and I feel like we are on the outside looking in again. I guess that sounds like jealously doesn't it. Not that I want someone else to have to go through what we do. No child should ever suffer or have to endure what Asa does. I just wish we were "normal" too.

Don't get me wrong, I thank God everyday, numerous times a day, for the blessing in our lives. The struggles do make us stronger. I do see the world differently than before mito. But I also tend to walk around with blinders on. I wrap myself in this little cocoon and I don't peek out often. I visit blogs that are about special needs kids. I check and post on message boards for special needs kids. Most of my Facebook friends have special needs kids. It is a safe little world full of encouragement and love, mostly. Sometimes the real world isn't always that way!

I know this isn't a post you'd expect while you celebrate Mother's Day. But I had to get it all out. I'm not a good stuffer of feelings. Especially when you throw hormones into the mix! Anna and Barry probably wanted to throw me out of the van this afternoon during my mood swings!! I did get to walk around Target all alone for an hour though so that was nice!

And I'm so happy to be the mother of 4 great kids. Anna is so smart and funny. She loves Asa and is a huge help. He even wanted her today instead of me. He put her hands on his sides to be picked up and pushed my hands away! I'm not kidding!!!

Cade is....well, a 9 year old boy! He is pushing my buttons by wanting to negotiate and control EVERYTHING and while it drives me bananas, I'm sure those are great skills for the real world! Right?!?! He is also super sweet! We have been butting heads lately but he usually comes back around and gives me a hug and tells me he loves me! Gotta love a soft heart on a boy!!

Gracie is the funniest thing I've ever seen! She can say the sassiest things with the innocence that makes you believe she isn't being sassy. Maybe I'm just too gullible. And talk about a soft heart! She is my helper and isn't grossed out by much! Gracie is just so easy going she can be Anna's best bud or Cade wrestling partner and Asa's best nurse all in a single hour!

And Asa! Well, ya'll know he is the toughest 2 year old around! The things he has to endure each day and then depend on me to boot! Really, it is a wonder I can even remember half of what he needs! Poor guy, somebody should get him someone who is better at this than me!! And even through the pain and frustrations of his life, he is the best cuddlier in the world. He is very patient with me, usually, and try so hard to an easy kid!

So despite what I may moan about, I am blessed! I am loved and supported. I have great kids who cut me some major slack and love me all the time. That is my mother's day present! Just forgive me of my yelling, of my forgetfulness, of my weariness and love me and my frozen pizza suppers! Who needs more than those little arms wrapped around your neck and the "I love yous"?!! Maybe Asa will surprise me with a hug tomorrow, too!

Thursday, May 6, 2010

Take me out to the ballgame!

Cade is having so much fun playing baseball this season. He didn't want to play when it came time to sign up. He literally waited until the last 20 minutes of sign ups to make up his mind. Personally, I think he was holding out for us to bribe him to play and that wasn't gonna happen. It was like a game of chicken, in my opinion...Cade will argue with this!

Anyway, he moved up to 9 and 10 year old kid pitch! Real kids pitching to real kids. They get walked and can steal bases! This is really the big leagues! And it is exciting. Sure sometimes the pitchers have a loooong wind up routine. And sometimes it drags on while ball after ball is thrown. But then suddenly someone will steal a base and have to slide, then things get exciting!!

Cade plays first. He loves playing first. He has played first on most of the teams he has been on. He considers himself sort of a professional first baseman. And he doesn't miss many but he has his errors.

And his batting has it's ups and downs. Don't they all. But he is fast when he gets on base. Tonight, though, his batting was pretty good. He got his first home run!!!! It was a fast in field ground ball that zoomed past 3 players all the way to the fence! I knew he had a double but the next thing I knew he was on third and then coming home! Moma and I were on the fence behind the plate cheering. We are pretty sure the sight of us at home plate scared and mortified Cade and he'll never hit another one for that simple reason alone! But boy we were all on cloud nine!!!

I feel bad too cause I've not had my camera for his games before tonight. And while I did take it tonight, I didn't get a picture of the home run! The first thing he asked me was if I had video of his home run! Oh, well, maybe next game!! And I took lots of pictures but I'll not bore you with all of them!

This is him getting a throw at first. I'm not good with the action shots. I tend to get into the action so I miss it with the camera. But if you ever need a good pre or post action picture, I'm your lady!

And this is at bat. Can you see the ball at his head?! Don't worry he ducked but the batters do get hit. A few per game usually. No worries though, you get to walk to first base if you get hit! I'm sure that more than makes up for the welt and bruise left by these fast pitches!

Another plus of ball season....the concession stand food isn't half bad! :)

Monday, May 3, 2010

Bike riding

School was out today because of the flooding and storm damage but it was a beautiful day!! I took the kids to our church to ride bikes! The church is 1/4 mile from the house and has lots of pavement and a great hill to ride down! This has always been one of their favorite activities. I was afraid that it might be too hot for Asa and I took the cooling vest but he stayed in the shade and had a great time!!

The kids actually rode to the church and I followed behind them with my flashers on. I love being in the country and remember riding on the rode all the time when we were kids. There is more traffic these days though. On the way home we had 2 bikes, 2 Razor scooters, Asa's chair, the gait trainer and 3 kids in the van! Really, have I said how much I love my van!! I should have took a picture of all of that. There was handlebars and wheels everywhere.

Gracie was quite a poser today. Somedays she runs when the camera comes out and sometimes she strikes a pose!

Cade had a great idea of playing "tag" on bikes. He wouldn't take no for an answer! He saw no danger in tagging while riding or bumping tires while riding! And bikes are no fun unless it is full speed ahead! He and Gracie both started riding when they were 3. He used to think it was a blast to ride super fast and then shove the bike forward while he feel down on his bottom! DAREDEVIL!

And Asa loved the gait trainer on the pavement...for 30 seconds and then he headed off road! Seriously, do you see all the parking lot he had to ride on behind him and he headed for the rough and the grass! Must have learned something from his brother! Asa really did manage well out there. He gets frustrated in the house cause he is always hitting something!

And Anna! She wouldn't get her picture made but the riding was actually her idea! The days are few when she wants to play with Cade and Gracie. Today was full of bike riding, jumping on the trampoline and riding on the trails in the woods! I'm not even sure she had her electronic devices with her today! :)

And I know they should have had helmets on! We left out with so much "stuff" and I didn't even think of them until we were on the road. I think we take for granted that it is "just" a bike and it is safe but we have learned a lesson about helmets from the real life experience of a neighbor! Next time I'll do better!

They are out of school again tomorrow but it is a day full of therapy and grocery shopping so nothing fun tomorrow!

Sunday, May 2, 2010

Complete washout

We had storms again last night. Tornado warnings, thunderstorms and lots of rain. When it was all said and done there was a lot of damage and schools are closed until Wednesday. Even going back on Wednesday will be tough. There are a lot of bridges closed and roads gone!

The roads in front of Barry's parents house is one that is out. We took pictures today, after all the rain was done and gone. The pictures I've seen when the water was really rushing are scary. So much destruction but thankfully, Bob and Judy and all their possessions are safe. Many aren't so fortunate. Several areas were flooded in the early Saturday storm and then again early this morning.

This is directly in front of Barry's parents house, on the main road. It is completely gone, all the way across.

It was very deep and was still crumbling away. We didn't get too close to the edge!!

This is the culvert directly across the road from the house. It is on a smaller road. Yes, 2 separate roads washed out in front of their house. Had this not washed out, their house would have been flooded.

This is at a house on Bob and Judy's road. The boat was on the trailer, under the carport and got washed away. I guess someone found the boat and tied it to a tree nearly 200 ft from the house!

And while in the 20 minutes it took for us to snap these pictures, they closed a bridge on the only road left to get out of the area. Praying this gets cleaned up quickly.

Saturday, May 1, 2010

Rain, rain go away!

We have had some major storms in West TN so far this weekend! It started with a 3am tornado warning. When our town was mentioned we loaded the kids up and drove down the road to my parents. We hunkered down in their basement with my parents, my 3 nephews who were spending the night and for a little, while my cousin, his wife and their little overnight guest. That is right, 13 of us in the basement for what seemed like an eternity. Funny thing that being up in the middle of the night with storms brewing, brings out the hyper in kiddos! I think Barry and my daddy stayed up above ready to wrestle the tornado than the kids in the basement!

Thankfully, we didn't have a tornado but we have had a ton of rain. I've heard it was 12 inches of rain! Barry's parents house nearly flooded when the culvert in front of the house backed up. They evacuated as the water got to the bottom of the truck and the driveway washed out. At some point the culvert washed out and the water receded from their house. There are tons of roads out and many churches canceled services for tomorrow. I even saw where one school will be out on Monday! I'm not telling the kids that though. No need to get their hopes up!

Asa did well getting up and out in the wee hours of the morning. He ended up sleeping until 1pm though. He has spent a few days this week doing nothing but sleeping. We ran out of the CoQ10 and I thought I'd hold off on ordering it to see if it was really helping him. I think after a week or so without it I can say it is worth the money!!

Asa didn't get sick again after last night in the car. I was really afraid we'd being looking at a whole night of sickness. Thankfully not! He did get sick again tonight but there was a just cause for that. I bought these chocolate soy drink boxes. I didn't really think he'd drink it but he drank nearly all 8oz. I should have stopped him since he has had trouble with all chocolate drinks we give him, even the chocolate version of the elemental formula he was on. Sure enough, before bed he got so sick. Again, the drain bags didn't work and I had to wrangle the tube while he was puking. Thankfully Barry was holding him so it was our 4 hands vs. Asa's one mouth. Shockingly enough, Asa won! He got him and Barry both covered! Then Asa got a nice long bath and was soooo happy! He loves water but the kitchen sink is getting a little small!

Asa has a new trick. I've been getting him to practice standing up by standing him on the changing table in front of me. At this height his head is at my shoulders and I can give him good support around his hips. I can also use the same position by sitting in the floor and having him standing in front of me. So yesterday Asa lays his head on my shoulder and proceeds to bite my shoulder! Well, it was more like a lick and maybe a gumming since he has such a weak bite. Since he isn't oral and doesn't mouth toys or food, I kinda felt privileged to be worthy of his bite! I acted all silly and said "oh, don't bite me" and other goofy things so that he'd laugh and try again. This was such a fun game to him and yet it was great therapy all in one! He was oral, he was standing and he was following my directions...or rather doing the exact opposite, which is totally age appropriate.

And just to prove it wasn't a one time game, we played again today only his bite was a bit stronger (he left a red mark!) and he was pulling my shirt away with his teeth! He thought this was great! He even bit Cade and Anna. Cade had to push it a little farther and got Asa to bite his ear and cheek but I discouraged that after I finished laughing at them! If no one was near him and we said "don't bite me" he'd open his mouth and stick his tongue out! I do realize we may have created a monster and he may bite anyone who picks him up so maybe I need to put a waring sign on him! I can't help it but I can't discourage his biting at this point. Now if becomes a Mike Tyson, we'll talk but right now just guard you shoulders!!