Friday, April 30, 2010

Think before you speak!

You'd think I would have learned my lesson by now! If you say your child has a skill and ask for it, he won't perform! The same holds true for the opposite as well! If you say something bad hasn't happened in a while, well, look out cause here it comes!

I just mentioned to someone that Asa hasn't had any gushers in a while. Don't get me wrong, he gets sick nearly everyday but there is usually warning. There is a pattern and a set of signs of what is to come. We can prepare ourselves. We can plug in a farrell bag and usually avoid a huge mess. Usually!

A gusher is different. Without any kind of warning Asa suddenly throws up. No rhyme or reason. You can imagine this is much worse than those daily pukes. We usually don't have enough time to get a bag. We might have enough time to get a cup. But now he thrashes around so much that he almost never hits the cup!

Asa has been doing so good and I just mentioned to some that he hadn't gotten so sick in a while. We were at the ball field tonight for practices (yep, plural, both Gracie and Cade had practice). It was nice out but windy and Asa doesn't do wind so for the first practice he stayed out in the van with Barry. We opened the back and folded the seats down so he could scoot around! I love a mini-van, it should be called a mini-home! We even set it up so Cade and Gracie could change in the car in privacy. And as long as only 5 of us ride, I can put Asa's chair in while it is still folded! Much easier on the back.

Anywho! For Cade's practice I thought I'd take him up to the field. It didn't seem too windy and wasn't crowded. Asa really liked it. He was tired and got a little crabby but not bad at all. The wind didn't bother him in the least! YAY!!!

Then on the way home, out of nowhere, BLAAAH! It wasn't pretty and he continued the whole way home! :( Poor guy! I hope it is one of those random things and not that he is getting sick. We've been so blessed this winter and spring to have very few issues!

Please continue to keep Cooper in your prayers. They are hoping and praying that tomorrow is the next step in the whole transplant process. When they transplanted the colon and small intestines they couldn't get him closed back up. They are hopeful he will be ready for surgery tomorrow to close him back up. I doubt any of us can imagine seeing your child sedated, in the ICU, with his new organs exposed (with dressings). Please lift this family up in prayer as this journey is just now beginning.

Wednesday, April 28, 2010

Let the shopping begin!

I found Asa a new toy yesterday. I know, I know, how often do I NOT find him a new toy, whether I buy it or not. It is just so much fun to watch him explore and sometimes the only way to do that is to buy it and bring it home!

Asa loves, loves, loves shopping carts. Most of the time he is in his chair and I just load it up. Sometimes I push his chair and pull a cart. Sometimes I let him sit in the cart, or I make him a bed in the seat part, but there is a cover and 2 pillows to keep him up. The point is he loves carts but rarely gets one! He'll reach out and try to grab other people's carts as we pass them in the aisle. And that is alot of action for a noddle guy!

I think it is the allure of the metal and the holes in the carts. I've looked for baskets or desk sets made like a cart but to no avail. So I was super excited when I was cutting through a toy aisle in Walmart yesterday and saw this cart!! And it was cheap. And it might help him walk if he'd hold onto the handle and push.

Asa was asleep in the cart (sleeping off a crash :( ) when I got it so he wasn't as excited as me. I'm not sure if the picture of a cart would have been too exciting either. So we get home and I start putting it together. The basket came in 5 pieces and Asa was super excited over these! He scooted over and held them up to his face.

As the basket was taking shape, he tried to scoot into it! He put his feet in it and bent his head over to take a closer look! He loved the wheels and spun them. I was so excited that this was gonna get my boy walking!

Unfortunately, by the time I got it put all together and stood him up for a trial walk, he had figured out my plan and wanted no part of it! He made that clear! Later on I got him to walk to a little bit but he is much happier just playing with the basket part! Oh, well, maybe he'll be more open to shopping next time!

Funny thing...Gracie was so excited too. I find tons of Asa's stuff in her room. I guess it is the fun of something new. She'll take it to her room but baby toys aren't very interesting so she abandons them!

I have a special prayer request. There is a little boy from Texas who was just diagnosed with Mito. His GI system is severely affected. Even before they had a diagnosis, he was on the transplant list to get a new small bowel and colon. Cooper got his call this week and had the transplant yesterday. Please pray for an uneventful recovery. It seems that mito doesn't like to play by the rules and things can go from good to bad on a dime! Please pray for this family as they are separated from the other children at home in Houston. This will be a long recovery and they need all the prayers they can get! His mom has a blog here and a little more info about the transplant.

Oh and didn't Anna do a good job as my photographer! The batteries kept running out and she'd had to swap them out. She is one awesome girl!

Monday, April 26, 2010


First, I have to say that I have the best hubby in the whole world! Well, he is at least in the top 10!

We've been planning a mito moms meeting in Memphis for a few weeks now. We settled on this past Saturday as the date. We were all so ready to go...and then came the tornadoes! So we postponed to Sunday afternoon.

Now I know many ladies enjoy a girls day out but our days seem to be different. We are known to show up at a restaurant and spend the next 5 or 6 hours there all the while completely oblivious to the time and any thing around around us! And that held true on Sunday. We met for a "late lunch" at 2pm. I left the restaurant at 8pm!! And I'm sure we had some odd sounding conversations about feeding tubes, seizures, IEPs, supplements (which I'll now refer to as "replacement therapy"), therapies, genetics, EEGs, MRIs and Houston. Seriously, I don't think anyone sat very close to us and maybe that is why!

So all during my marathon lunch Barry tended to the children at home! But that isn't what makes him so awesome cause as my new favorite FB group is called "it isn't called babysitting when they are your own kids"! He is amazing because he did the laundry and cooked them spaghetti for lunch. He had Asa fed and playing when we came in from church. And the best, he doesn't complain when I don't cook!

And still those things don't really make him too extraordinary. Maybe it is that he takes the garbage out. Or he always puts out the new roll of toilet paper, which because of some odd issue he won't allow me to write out on the grocery list. It can only be TP cause no one else buys the stuff!! And I can't remember the last time I had to open a new tube of toothpaste. Aren't these the silliest reasons to be so amazed at Barry?!

He also makes the coffee here. That is mostly for his own survival though. He says I make it so strong that I'm starting to grow hair on my chest! But not only will he make the coffee, on the weekends he'll pour me a cup and start the internet so I can check my email first thing! Now that says love better than diamonds if you ask me!

Plus, he works really hard, does the ball stuff with the kids, acts goofy with them, makes me laugh, changes diapers, cleans puke, washes the van, mows the grass and mostly just has to put up with me!! So I guess all of that combined makes for a pretty awesome guy. And why this has struck me now, I don't know. But these things just keep passing through my mind and I need to put them down and get them out! You know, make room for the REALLY important stuff! :)

Secondly, Barry stayed home from church with Asa because Asa has been so off! He won't nap, he fusses, pitches a fit really, red faced, won't poop, etc. I know that doesn't sound so bad but when it is coupled with a disease that causes low energy and the need to avoid stress, well, there is the problem. Picture your normal 2 1/2 year old without a nap. Now picture that child on steroids! CRAZY! The less he sleeps, the more he needs! The more he needs, the more he fights. And while he is busy resisting sleep, his tummy is throwing in the towel cause it is just too much work to do all this at once! We usually remedy this by giving him some much needed down time and getting back to a good, solid routine and things straighten up. So far this hasn't happened in the 4 days we've tailored just to Asa. He did start pooping better today...even though I really begged him to get it all out yesterday when I was at my marathon lunch!

Tomorrow is a therapy day but maybe he'll be in a better mood for that! SURE! Well, I can hope, right!

Oh and a Gracie story to close. She had a softball game tonight. They did pretty good and had almost tied the score when the other coaches lost it over some calls. Seriously, they got so ugly! Anyway, after the argument and the delay, Gracie's team lost. So in the car we are talking about tempers and tantrums. I called Anna and she tells me that Asa is asleep, at 7pm and not for the night! I scream "get him up!". I go on to loudly tell her he needs to be up, why he needs to be up, how could she let him go to sleep, whoa is me, etc. So I hang up and Gracie said "well, looks like somebody else had a temper tantrum tonight"! HA!! Out of the mouth of babes!! And for the record, the lack of sleep must have finally caught up with Asa cause he still went to bed before 9pm! Poor guy.

Thursday, April 22, 2010


I feel pressure to have a topic and stick to it. I have a hard time not just rambling on about lots of stuff. Tonight I will ramble!

We had PT today. Asa was in a mood. And it wasn't a compliant one!! He screamed to avoid the mat work. Seriously, he won't even try to get into sitting. You'd think he'd hop up so he could scoot away but nope! He has the skills but it is hard to get them in order so he quits.

He also had speech/feeding. I told his SLP that I was gonna bring my grandmother with me next time. She seems convinced that if we just tried to get Asa to talk then he would. She misses the part where I talk to him all the time and sign and sound out words and babble on like a crazy person. Today was feeding day though, not speech, except funny thing about is alway on! But back to feeding, his therapist put a cheeto on the tray and some goldfish. And Asa picked up the cheeto!!! He seriously hates cheetos! But he touched it. He even tried to crunch it. You should have seen his face! Total disgust! He fed me a bite. Then while Ms. Jill was feeding him the pudding, she slipped in a bite of cheeto! He didn't gag at all. He didn't like it at all but he didn't gag! I realize 2 year olds eat cheetos all the time but this was a big step for my guy! So guess what I bought at the grocery store...cheetos!

After therapy, not so great. We went to Kohl's so I could look for some shoes, and I'm just now thinking I should have looked for the friendly, understanding worker I met last time I was there! Shucks, I'll have to go back! lol Anyway, while I was looking at shoes I noticed Asa was getting red. It wasn't hot in there so this perplexed me. Then I realized he was pooping! Not good, so I walked away to a secluded spot in the back. While trying to push out, his lunch was pushing up! His belly got sooo bloated the chair buckle was cutting in his stomach. Then he started gagging. I pulled out and hooked up a Farrell bag but it didn't work! Seriously! So we are in the back of the store with a tube and bag hooked up to his belly, I've got a syringe sucking the stomach contents to see if the bag will start working, he is sooo stinky, and since the bag isn't working he is puking and I've got out a puke cup and burp cloth! So are you ready for what happens next....

A worker stops at the next aisle and says, "ya'll doing alright today?"!!! I kid you not! Did she even glance this direction? Heck, who couldn't smell the poop or hear the crying and gagging! Maybe she was security sent to be sure I was hunkered down in the bedding section while shoving jewelery in the stroller! I paused and mentally flipped through the smart aleck, sarcastic comments I had in my mind and then opted for a "pretty good, and how bout you" while I came up for air from the toxic fumes!!! Fun times!

So once I got a handle on things we went to an empty dressing room and chilled for a while. Again, I walk into the dressing room with nothing in my arms, I'm sure security had their eye on me by now! I never got the bag to work so I drained his tummy into the puke cup, changed the diaper and just regrouped. Funny thing about this episode...he didn't crash and sleep like all the other times. He rested and was noodlely but he never went to sleep. Is this progress? Will we see an end to these episodes? One can hope!!

It is only fitting that when I get home this afternoon I find this blog post by someone. I'm not sure how I got to this blog. I don't "know" this person like most of the other blogs I follow. Still she has some good insights. Please read these because we have been hearing nearly all of this too often lately. The Rules of Special Needs Parenting! Kinda fitting for my day!

Tonight we went to Cade's ball game. Well, Asa didn't but I did. Funny how I refer to me as we cause it is rarely me and often we! But, I had a good time at the game. It was a good game, not as good as Tuesday I'm told but good. It was good to see the kids and families from last season. And I'm sure Asa had much more fun here than he'd had at the game!!

Tomorrow night Gracie is having a birthday sleepover. Her first sleepover! She invited 3 girls. That is enough, right! I spent the grocery budget on candy and drinks and pizzas! Well, and the cheetos that I'm sure the girls will eat cause Asa will reject them.

Oh, and I got my new shoes! I haven't had new shoes in 2 puke, poop and meltdown will deter me! I did skip Old Navy though, I have my limits!! :)

Wednesday, April 21, 2010

One more birthday and sleep deprivation!

First thing Gracie is 7 today! I can't believe it! She told me today, "Moma, your kids are all growing up"! So true. She may be growing up but she is still holding onto some of the sweet little girl stuff. She kept asking for the new Buzz Lightyear with the wings for her birthday. I'm sure she'll outgrow him before her next birthday and she'll wish she'd ask for highheels or makeup! Gracie has loved, LOVED, Toy Story since she was tiny! She has a whole collection of Woodys, Buzzes, a Jessie and a Bullseye. Still, just to keep the memories, I got her the new Buzz. This is the last of the easy years when they want one of each from the toy aisles! It gets harder to buy for them as they get older. But for tonight, I tucked her in bed with a plastic Buzz Lightyear with the flip out wings!

Gracie is the closest thing we have to a nurse or therapist here. She isn't fazed by any of the stuff that goes on with Asa. Or any injury, to anyone, for that matter. She is very interested in the tube changes and diaper messes. She pays attention when she goes to therapy with us or hears us working and she'll do the therapy with Asa on her own. She has gotten him to show off skills that we have worked and worked on!! With Anna's muscle and Gracie's gut, those two wouldn't have a problem with Asa on their own. Gracie is like no other, I promise you that!

She has confidence like I've never seen. She'll say she is the best basketball player, the best softball player, even the best soccer player. I reminded her that she'd never played soccer and she said it didn't matter, once she plays she'll be the best. Confidence! She likes playing PollyPockets and Brats but also loves Power Rangers and army men. She loves her bike and is the best golf cart driver around....not just her words! She was tickled to get tissues, toothbrushes, toothpaste and bandaids as presents. She also happens to have the messiest room in the house and that is saying alot! She also saves her money! Cade and Anna will pool their money to buy a game but Gracie keeps hers. She is splurging if she buys a pack of gum! I love that girl bunches!!

So you remember Sara that took those wonderful photographs of Asa last fall? She is also a talented baker! Oh, and she sews. And I'm sure there are tons more craftiness that I don't know about! I've seen a few of her beautiful cakes and have eaten some great cookies she made. A few weeks ago she made the cutest cookies for a bake sale at the therapy center. So I bought 4 cookies and when Asa wouldn't eat his, I had it. YUMMY!! I liked a baseball she'd made and thought maybe I could make softballs for Gracie's birthday snack at school. Sara kindly gave me the recipe and I actually made cookies and icing!! Seriously, from scratch, like with flour and sugar and butter! Turns out this recipe was so easy! Of course, I only made circles for softballs. I'm sure it all isn't so easy when you have a more complicated design but this was fun! I don't think mine are as good as Sara's but they are tasty. And I kinda obsessed about the exact color of the softball (not exactly yellow but not too much green!). Turns out you can't find stickers or ribbon or anything with softballs on it! Go figure! Anyway, here are my, I mean Gracie's, cookies! The recipe made like 40 cookies. She took some to school and some to church tonight. Oh and one of my pans stuck so really it made closer to 50.

Today was also Asa's ABR hearing test. Dr. K in Houston wanted us to get his hearing tested with a BAERS test. We tried to do it when he was sedated for her recommended MRI/MRS but it didn't work out. So after some searching, I found out we could have a ABR done here in Jackson. He just needed to be sleep deprived at 8am this morning. Then they'd hook up 4 electrodes and measure how well his ears send the signal to his brain. Did you get the part about being sleep deprived at 8am!!!

So we got up at 4:30 this morning. Asa is not a good napper. He likes to be in his bed, in his room, with his music. He is kinda picky like that! So I'd called the ped to got a prescription just to be sure he'd be asleep and not be bothered by the poking and prodding. I got him up early, fed him and gave him the meds when we left. We get to the appt and he was playing and kinda perky! Not acting sleepy at all. YIKES!! But once we got in the dark room and I got him comfy and pulled out Barry's bedtime trick of rubbing his head a certain way, he quickly drifted off. And he stayed asleep. Even through the placing of electrodes, inserting the earplugs and wire, and the testing! He slept perfectly!! And he heard perfectly!!! YAY!! I was a little concerned about this test since he has such a startle but his ears and nerves work. Not sure what happens once the sound hits the brain but the hearing part is A OK!! So another worry put on the back burner for another year or two!! Oh, and the dr. that performed the test knows a little girl with mito! How crazy is that!!

Last night, Anna, Gracie, Asa and I went to a support group meeting that was organized by Asa's EI teacher and her student!! The focus was tube feedings and feeding issues! Asa's OT and his substitute SLP were there. The other speaker was a lady who'd fostered SN infants and kids. She was a wealth of knowledge about tube feedings. And I got to meet and talk to another mother. Her DD doesn't have a tube but has feeding issues and delays. I could have talked for hours but my girls were ready to go! Anna told me on the way to the meeting that I could start a conversation with a tree! HA!! The kids were all so good too! Even Asa. He doesn't usually do well at night. In fact, while typing this he got sick and I had to stop and drain/vent him. He went to sleep and I just put him to bed. This is how our evenings usually go! But last night they were all so good. I've been wanting to meet other parent locally who have SN kids. Now just to work out a time for a chat!

While we were at the meeting, Barry and Cade were at Cade's ball game. They won in extra innings! Sounds like it was an awesome game! Gracie had a game on Monday. They didn't win so was over quickly! Cade has another game tomorrow and Gracie on Friday! I'm telling you this week is crazy busy!

I found Asa a mug with a straw! He loved it! Crazy how much he likes a straw cup!! I love it!! I got this one at Target but I saw another one I liked at Penny's! Can you really ever have too many straw cups?! Kidding, the answer is YES, so I left the one at Penny's and it was 50% off! Aren't you proud of me for showing some restraint even when there is a new skill involved! Funny thing about Penny's. They had a little area set up with the baby clothes. It had summer stuff and a pink Adirondack chair. I got Asa out of his chair and let him try out the pink one! He liked it!! We sat there for 20 mins at least. He was so happy and just chilling out so I let him relax! Too bad it was pink!

Asa's OT tried out a new swing for Asa. He wasn't so impressed at first but we did get several grins from him. I'd just been looking a hammocks at Gander Mountain last week. I guess great minds think alike! HA!

Thursday, April 15, 2010

Exciting things happening

I know it has been a while since I posted. We have been super busy and I've felt icky, I guess the pollen. I went to bed early 2 nights and that is when I usually do my posting. So much has been going on and I need to do about 3 posts but I'll just give you the best news tonight!!

We changed Asa PT up again. I needed to free up some time. We've been going 2 days a week for 30 minutes each and while Asa has benefited, it is hard. With summer coming up I didn't want to be gone 3 days in a row for therapy. So we bumped him back up to a single, 45 minute session. We'll see how it goes but I hope Asa's able to give us some good work and not tire out.

So today we went to PT. Asa has loved to be up and walking and he walked part of the way into the therapy gym. Walked, with support, of course. But Ms. Nancy had a little walker out for him to try. I admit, I wasn't a believer it would work. What do you think? Do you think he held onto that little walker? Did he grin so big and start stepping? Did he push the walker out in front of him with very little support? Did Asa do it......

YEP!! He took right off! At his best, Ms. Nancy was only holding him by the back of his pants!!!! He went back and forth across the therapy gym 3 times. And how amazing that I had my camera with me! He got tired and I'm not sure how long he could go but I was amazed at his first try!!

Some other good things, Gracie got her hair cut off. Ball season has started. Gracie played 2 games Sat. and one tonight. They lost 1 and won 2. Cade played one game on Sat. They won. Asa saw the ped for a well-child (I could do a whole post on that in itself!). Dr. Woods was impressed with his progress! Some bloodwork came back good, still I can't help but question.
We are having a yard sale this weekend. Hopefully we get enough to cover our trip to Houston.
So see it's been crazy here!!! And it doesn't look to be ending anytime soon!

Monday, April 12, 2010

A pump free day

Sounds good right! Well, hold on for the rest of the story!!

I thought I'd try feeding Asa breakfast this morning. I do this occasionally! Really, I try applesauce or yogurt or cream of wheat. He usually refuses. This morning he was OK though. He ate a whole applesauce but wouldn't drink anything. I had to use some trickery to get him to eat but nothing too overboard, just some singing and dancing and he fed me.....what that isn't normal?! It only took 45 min. for him to eat 4oz of applesauce!

Then for lunch I thought I'd really push it! I went to the pantry to see what kind of torture I could find! I found a Gerber meal with ravioli and green beans. Well, the green beans would be a no go with an oral sensitive kid. Have you ever thought about green beans. They have that stringy kind of part. Plus the bean separates from the pod. You have 2 different tastes and textures in your mouth at the same time. Plus they aren't all that good when they don't have the butter and salt and stuff! Sorry, I probably just ruined green beans for some people!

Anyway, the ravioli won. I heated it and fork mashed 3-4 raviolis and put them in an applesauce container (cause that is a preferred dish!). Then I got out another applesauce. I poured 1/2 a bottle of Pedisure into a straw sippy (that he'd already refused today) and to the highchair we go!! I could have cooked a 7 course meal in the time it took me to prepare one for Asa that he'd likely refuse....but on we go!

He really liked the Pedisure this time. He drank that 1/2 cup so I refilled. He ate the applesauce and I slipped in bites of ravioli in between. I wouldn't say he hated the ravioli but he wasn't to sure about it. He ate most of the little bit I mushed up. It was a HUGE texture jump so I'm just glad he only gagged twice!!

So even though it was much more work than the pump, he was doing pretty good. Sure he was low on fluids and calories but it was ok. Then after school! He would only eat a yogurt, no drink at all, no Pedisure or juice. I was growing concerned but not too bad. Something upset him and he got gaggy and sick so I vented him and he crashed out on the couch. When he woke up he was CRANKY!! So clingy and needy. He wouldn't drink or eat. About 5, Barry fed him a sippy of Pedisure and he gulped it down and wanted more. He drank most of this down too. But almost immediately he puked it all back up on Barry!

It really just went downhill from there. He was ill and wanted nothing and everything. He cried and fussed and fussed and cried! He wanted up and then down.

It was finally 8pm and Barry gave him another cup of Pedisure. He drank it and played for a minute or two before wanting to be held and not held again. Finally Barry just put him in bed! He was happy and quiet then! We were all happy and quiet!!

So even though he was pump free, I can't call it a success! It was exhausted and by the afternoon, nobody was having fun!! I'll not try this routine again. I see the flaws in my plan. And I really didn't have a plan. I was just gonna try breakfast and then somehow I decided to press my luck!

Tomorrow we go back to 8oz of Pedisure at 500ml/hour at 8, 11:30, 2:30, snack at 5 and bottle of Pedisure before bed! Why rock the boat?! Who needs the pressure and stress?! Yeah, your right, I'll be right back at it tomorrow. It isn't a party until he pukes!!

On a completely different note.....thank you all for the comments and emails about the post yesterday. God just really laid it all out there for me to see so clearly and I'm glad it touched so many of you as well!

Sunday, April 11, 2010

Plans, hope and a future

"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11

I'm a planning person. I WAS a planning person! Then I was surprised. We didn't plan for Asa, he was a surprise to everyone but God! Then once I got settled into the thought of this "surprise", the surprise came with surprises!! That is when it become harder to plan!!

In the early, really tough days (mostly the nights!) I tried to plan and reason why Asa was suffering. What could I do about it? How could we fix it? There sure weren't baby books on any of the stuff we were going through, we had no plan! Even the plans we would make would go sour. That made the plans even worse!

So one day God gave me this verse of scripture! It has become my life verse! I have no idea what the plan is now but someone better does! God has a plan for Asa, for me, for our family! It sure isn't the one we thought we were on but it is a plan of more than I could ever ask for or imagine!!

So, I was delighted when our pastor started preaching from these verses this morning! Cause, you know, I got this verse figured out, right!! I could get an A++ if we had a test after the service! Well, turns out there is more to this verse and guess what, it fits into my life even better now!!

This verse was given to the prophet Jeremiah, by God, for the exiled people of Israel. You see, they had been taken to a foreign land, against their will. They were in a strange and unfamiliar land. In Jer. 29:4-7, God tells the people to "settle down" in this new land, to continue to "marry" and "increase in numbers" (which is basically "go on with life"), to "seek peace" and "prosperity of the city to which I have carried you". The end of verse 7 says "because if it (the city) prospers, you too will prosper"!

Wow, that spoke to me! My mind jumped right to the poem "Welcome to Holland". I wasn't given a choice to be in this land of special needs parenting. And I resisted at first. I prayed that I'd wake up in the morning and it would all be a bad dream. I prayed the supplements would amazingly "cure" Asa's tone and one day he'd just start to sit up and crawl and walk. I eagerly went to appts and sought out the experts and advice, just knowing we'd find a magic combo that got us out of Holland and on the first flight to Italy! Then one night, I decided maybe God knew what He was doing when He put us in Holland. Maybe Holland isn't so bad if we just used the guidebook God gave us. You see, it applies to Holland or Italy or any other country!

And while I didn't throw out the regular handbook and I still flip through my Italy tour guide occasionally, I have come to love Holland! And you remember the part about prospering the city you are in.....there are some amazing families that make Holland rock! You might look at a special needs family and feel pity but let me tell you, I know some awesome families who would pity a "normal" family! By sharing info and tips and ideas, not to mention the amazing support and love, we make the special needs community prosper. Not whither away in some corner. Just look at Morgan's about prosper! Maybe Walt and Co. should look out!!

I love it when I get a familiar passage of scripture and learn something new. Something relevant for me, for now! There is a ton more stuff I could say about this scripture. I could go on about how the Israelites were banished and suffered to be molded for a better, higher purpose. I could go on to talk about how the struggles and trials of life only make us rely on God more and better us for His kingdom. I could mention that many suffer more than we do and God cares and sees their pain and needs, and He has a plan for them too.

But it is just enough to rest in the idea that I don't have to make the plans anymore. That part is taken care of, all I have to do is follow the map! And at the end is prosperity, hope and a future! That is enough for me tonight.

Friday, April 9, 2010

Appointments and stuff!

Asa stole my sweet tea while we had lunch!
He held on with both hands!

We made him fill out his own paperwork!
Notice the pain scale....this wasn't for how much of a pain is it to wait hours for a scheduled appointment! Had that been the case, this moma would have been a 7! You wouldn't want to see the picture for that one!!

The super long exam room at the eye center made a great place to practice steps, complete with a rolling stool!!

Look....NO HANDS! Seriously, this skill just poked its long awaited head out this week!!! He even took one step while in this position!!! I believe that is what you'd call, wait for it.....
Ok, so maybe he has a little ways to go before he can earn that title but it is in sight!!

Asa playing "Patty Cake" while his eyes dilate! Look at those red eyes!

We had a safe and pretty easy trip. We kept thinking Asa would go to sleep in the van but he was wide awake the whole time!! He was very vocal too. Lots of squeals and grunts and fusses!! I really liked him testing his vocal cords out, he doesn't do that very often!! Unless he is fussing, he can fuss with the best of them, even with no words!!!

The neurology appt was kinda a bust. After waiting in the waiting room for 1 hour and then the exam room for 30min, there really wasn't time to discuss much since we had the eye appt in 20 min! This is the second time this clinic has been sooo far behind with us. I don't mind waiting for a little while but seriously is seems like it is the norm with this clinic. Anyone else have that happen over and over? I'll just email with my questions later. Thankfully we had no pressing or urgent matters to take care of!

So when Dr. B came in he thought we were another family! It was OK though cause I was gonna ask about the same thing this family was after! Meghan, he thought I was you coming after the appeal letter! I told him he had us confused but I wanted the letter too! LOL! He is sending me one to have on hand! Thanks for having him on the ready!!!

Before we left for the eye appt. I left thank you notes for the GI and geneticist that are leaving. Is that weird? I really do like them and they were the 2 most encouraging drs we have!!

The eye appointment went great!!! They dilated Asa's eyes and he did great. The dr. checked his vision and he did great. The dr. checked the back of his eye and he did great! The boy barely moved while she held a magnifying glass to his eye and shined a light in it! He was amazing. His vision is fine and his eye itself was fine. We don't have to come back for 2 years!

While we were waiting for his eyes to dilate he had the best time stepping and scooting around the room! He was so funny and playful!

We had a great day overall! Tiring from driving 2 1/2 hours each way but we made it safe and sound. I just couldn't get Moma to pay attention and stop watching Hannah Montana that they had in both waiting rooms!!! That show is gooooood! Maybe we do need our satellite back! lol

And Cade is fine today! He has been fever free for 24 hours now. I have my doubts about this whole flu test thing. I don't want to jinx us for tomorrow but this has been the easiest flu ever! Was it the Tamiflu or a false positive test. I don't guess it matters, just glad he is feeling so much better! Now to keep everyone else well! Gracie said Cade made her wait on him today! She had to bring him popcorn and OJ so he wouldn't touch the kitchen!! Seriously I didn't want the boy anywhere downstairs!!

Tomorrow, Gracie has 2 softball games and Cade has a baseball game. The weather is supposed to be great so I'm looking forward to it!! Just got to remember to take my allergy medication in the morning!!

Thank you all for the prayers for our travels and for healing for Cade!!

Thursday, April 8, 2010

On the road again!

We'll be traveling again tomorrow. Asa has an appointment with neurology and then an ophthalmology appt with a new doctor. I don't expect any surprises and just a baseline check up but prayers for our safe travels would be appreciated!

As I said before, this is a month of appointments for us. First, these 2 appointments. Then, next week, we see the ped for a well check. On the 21st, he'll have a sleep deprived hearing 8am! Then, the first of May, we see the new GI. Busy, busy!!

And on top of this travel and appointments tomorrow and ball games.....Cade has the flu! He doesn't seem so sick, if you ask me! He has a fever and the only reason I took him in was because I'd be gone tomorrow and the games are Saturday!! I know, crazy! So, I was hoping he had strep that way he could get a shot and be done. But no, they did a flu test and it came back positive.

I've been keeping him isolated anyway but now we'll be extra careful! Anytime the kids sniffle or feel warm, we forbid them to be near Asa! This has gotten us through several sicknesses so prayerfully it'll work this time! Cade seems good though so maybe this will be mild. It is funny cause I've spent all winter just waiting for this to hit and it finally hits during spring break! I know Cade would rather be outside playing than inside confined to the upstairs!! Just praying this is one time he doesn't share!

Wednesday, April 7, 2010


Can we just hit the pause button? Can't we just stop the clock for a little while!

Asa is 2 1/2 today!! As close to 3 as he is 2! When did that happen?!

And you know what happens at 3? School happens at 3!! We have a meeting tomorrow for his last 6 month EI goals. Next meeting will be for school transition. Then we'll have IEPs. If you don't know what IEPs are be least that is what I'm told. I won't know until Asa is 3, which is 6 months from now!

And mostly what I'm so wary of about him starting school is myself! What will I do with my mornings free? Barry said "get a job" but Asa will only go to school for 1/2 days. Who hires people for 3 hours a day? It's funny because when Gracie was almost old enough for school, I was soooo excited. I had plans for my days! Now I'm holding onto the school house doors for dear life! Who'd thunk it!

And this 1/2 birthday bring about a whole bag of 1/2 year specialist and appts. We got a yearly pass from some doctors but the biggies we see every 6 months. So this brings up some more fun. Last week we got a letter stating Asa's GI was leaving Vandy. Oh, and the GI clinic will no longer be coming to Jackson. We'll have to travel for this appt. too. And I really liked Asa's GI. So then today we get another letter today stating that the geneticist was leaving too! Now, I really, really like the geneticist. He would sit right down with us and talk like normal. Not that complicated doctor speak that always ends in a "and so, what this means for you is....". Yeah, cause that is the only part I cared about anyway but thanks for the complicated, long, drawn out lesson you gave me!

So now we have a new geneticist and new GI! The geneticist isn't soooo new to us. He is the medical advisor for the UMDF group in Nashville so we've chatted a bit. Funny thing, I emailed him to see if he had a GI preference for Asa, with the mito and all. Who knew he'd be our geneticist too!

And I'm sure that was long and rambling so forgive me!

Now on to Gracie. She'll turn 7 in 2 weeks. Really, when does this stuff happen!! Do they grow while I'm sleeping! So she was standing next to me last week and I noticed how tall she is, like a big kid. I tried to bargain with her and let her turn back to 5 on her birthday instead of 7. She said no. Well, at least I tried.

On a serious note, could ya'll remember a little mito friend in prayers? Her name is Brigid and she is very, very sick. She has battled much more than I can imagine. And now she battles again. This is wearing on her little body and the bodies and minds of her family! Please mention Brigid in your prayers tonight!

Tuesday, April 6, 2010

Our Easter in pictures

We all clean up pretty well!

The girls

The boys

There are a ton of outtakes from this set up!
I could do a whole post based just on these pictures!

Easter at my moms

This is all the kids that hunted that day. Well, minus one who was in punishment for an egg stealing incident! Someone joked "wasn't the Easter picture the punishment"! You know what we should do next year.....make them take the picture BEFORE they can hunt! This is my kids, my brother and sis in law's 4 boys, my cousin (I'm not sure why we made Carrie get in the picture, she is all grown up now!) and my older cousins baby, plus 3 kids from across the road. You know, the more the merrier!

This is my cousin Lacy and her sweet peanut, Danilyn! They walked in the Mito What? 5K but the pictures I took of them were awful. This one is great though! And Danilyn was a super egg finder but someones ate her candy when she took a nap!

Cade hunting eggs. He is ill that I made him pause for a picture!

Gracie and her "prize" egg!

Some are too old to hunt eggs!

And some are too hot and thirsty! I'm so glad Asa is drinking from a straw. He thinks it is fun but it really ensures he is hydrated enough!

And we like to make the hiding an adventure, not just the hunting!

We've been hiding an egg in this bird house for as long as I can remember. It is usually so funny trying to get the egg up there. This year Daniel, Lacy's hubby, got it on the first toss. I'm convinced he was training for this since last Easter!
Gracie found this egg but needed a little help from Eric getting it out! She is holder her prized egg in the picture above!

And Chris, my brother, hid an egg on top of the house! Did I mention that I'm a shorty in a family of giants!

We really had a wonderful weekend! The weather couldn't have been nicer, the family couldn't have been more fun, the food couldn't have been yummier! The blessings were really piled on us!! I want to hold these kind of days in my heart and be able to pull them out when I need a boost!

Friday, April 2, 2010

Asa made breakfast this morning

Asa was scooting around the kitchen and got to 3 drawer organizer we keep his supplies in. While banging around on it, his chocolate cheerios fell onto the floor. Asa happily played with the box for a while. He loves opening and closing things so he opened and closed the top for a loooong time!

Then the box fell over! Out came a few cheerios!!

So he reaches in and pulls out a few to feed himself. Then he dumps the box upside down and a lot spill out!!JACKPOT!! He sat happily in his little pile of chocolate cheerios for quite a while. He really only ate a few. He put some back in the box. He opened and closed the top some more. He kicked around the ones he had on the floor.

At some point many got stuck to the underside of his leg and he was not happy with that at all! Once he started throwing them, I ended his happy breakfast game!! It's all fun and games til the cheerios start flying!

I'm so glad so many of you really understood about my happy run in with a super lady yesterday. I was amazed at the conversation and couldn't really figure out how to put it into words. I guess we live in a world were pleasantries are exchanged and sometimes not much else. Employers train employees to say "hi", "welcome" and "how are you" but they don't train them to mean those words! I have had the exact same chat with people several times a week and it has NEVER gone the way our chat did at Kohl's. I hope Amanda S. is only moonlighting at Kohl's because she has a God given gift to see people and things like no one else sees it! I pray that I'm able to have God's eyes like that and see the people around me more clearly!

Thursday, April 1, 2010

A good day

Asa went to his first ball game of the season. Well, technically it was a scrimmage but it counts!!

Cade had a scrimmage and Gracie had practice so we all went off to the ball park! And it went wonderfully!! Asa seemed to love the people and didn't startle at the noise. It wasn't too windy or hot so that was perfect for him. This is so different from last year. He had a meltdown nearly everytime we tried the ball park last year. Now, I'm sure as the season gets going and it gets busier things will be different but tonight was wonderful!!

I also had an amazing run in with a stranger at Khol's today! Odd place to meet an angel but I'm almost convinced she was one! I ran in to look for Anna a shirt. I only had 20 minutes and it only took 3 minutes to decide I wasn't sure what she'd like so I moved on to the baby dept. As I was looking at stuff for Asa, an employee started up a conversation. "How old is he, what's his name, how'd you come up with that name", just the usual. But she didn't give the pre-recorded responses to my answers. "How old is he? He is 2 1/2. Is he running around everywhere?" or "What's his name. His name is Asa. Oh, that is neat, weird, unusual (take your pick). Thank you we like it." You know these conversations usually follow a pattern.

But not this conversation. Turns out she knew the meaning of Asa without me telling her....physician or healer. And she wasn't taken back by my joke of "we thought he might grow up to be a physician, not have a dozen on speed dial". She had several siblings with special needs. Then she goes on to tell me that perhaps "healer" had a different meaning for Asa and our lives. Perhaps he wasn't to be "healed" but he was to "heal" others. And not a "healer" in a physical kind of way but by showing them things they'd never seen before or teaching things they hadn't been taught before.

Now this might sound like a deep conversation for the middle of dept store but let me tell you I get chills thinking back on this even now! I got to tell a little about how Asa has opened our eyes to new people and things. How life is so much sweeter and things aren't taken for granted as much now. How can so much be said in only a few minutes during a shopping trip? I wonder what spurred her to approach us like that? Well, no I don't wonder, I already know! God sent her to me so that I could share a little of our story, our life with someone. Each time I tell how blessed we are to have Asa, I feel it even stronger than before! God has been so good to us!! So good to me!! We are never alone!

My heart and mind are just so full right now!