So, guess what! I've decided I'm stuck in the middle of the movie "My Fair Lady"! Change out the characters and replace Eliza Doolittle with my CDH son, Adam! Oh the joys of Apraxia - a neurological speech disorder. It really is quite the challenge at times.

I hate H1N1; I hate it, hate it, hate it! It's a beast; it's a mystery; it's a threat to my family!

[color=darkred:3c772ec62d][/color:3c772ec62d]Hello, Hello! I can't believe it has been a year and a half since I've blogged. You've missed out on a lot of stuff that's been going on with us. LOL! Let's see if I can remember a year's worth of stuff and update you.

First off, since I last blogged I have attended 2 CHERUBS conferences :D If you have never attended one and you have the opportunity to, I would highly recommend it. It's a bonding experience that I can't even begin to describe. Well, yeah, maybe I can describe it a bit. . . . . have you ever sat down with your friends/family and thought to yourself "this stinks; not a person here can understand me and what I go through each day with a CDH child"? When you attend a CHERUBS conference you are in a room filled with those who share your life's daily triumphs and struggles. You realize that how close you are to people that you have met for the first time and it is a wonderful feeling. Here at CHERUBS, we are family! In the past year or so, I've also been blessed to attend 2 Pennsylvania CHERUBS get togethers, 1 Ohio get together, and the Angel Ball! My family and I look forward to many more get togethers.

Me . . . . . the past year, I have been really struggling with exhaustion, migraines, and weight gain. I've been feeling about as useless as one can get and I hate that feeling! :x I got myself to the doctor and as it turns out, I have thyroid issues. For the past 6 months I have blood draws every 6 weeks to check my thyroid. So far, we haven't been able to regulate it. It's getting better, but still isn't where we want it. I'm also really struggling with food the past 6 - 9 months. I have a ton of food allergies, but now it is suspected that I am Celiac. I've not yet been tested, but my doctor wants me to get tested for it. I've been trialing gluten free diets and I really do feel a ton better when gluten free. I just hate to go that route as it leaves me with not much to eat.

My oldest son, Aaron, started Kindergarten this year. So far, he is bored silly. He comes home telling us he wants to skip Kindergarten and go to 1st grade. The principal has already told us that Aaron is way above the school's Kindergarten curriculum. We meet with the school in 2 weeks to discuss our options. Aaron also continues to have issues with reflux. His medication is no longer effective and our pediatrican is no longer comfortable handling the case. On Monday, we take Aaron to see a gastro doctor.

Adam, my CHERUB, is now 3 and full of life! He's the most tenderhearted and kind child I think I've ever met. Of course he's all boy as well and does know how to be a bit of a stinker. LOL! Adam continues to struggle with dysphagia. We've had him in feeding therapy (VitalStim) since June. I'm not yet convinced that the therapy is helping the swallowing problem :cry: We'll continue on for about another month and then get another swallow study done. Adam is also Apraxic (neurological speech disorder). He's in speech therapy for that and is making huge strides. :D I'm running like a chicken with it's head cut off with the therapies. Feeding therapy is every Tuesday and Thursday. Also on Tuesdays he has speech therapy and on Thursdays he has a preschool teacher come into the home to work with him. I'm basically left with Monday, Wednesday, and Friday to fit in all the rest of life (house chores, doctor appointments, school meetings, etc.).

There you have it; there is my life the past year. Hopefully, I won't wait so long for my next update. LOL!

I don't even know where to begin with this blog. I'm this big ball of emotions and just need to vent.

I'm scared, ok! I'm scared beyond recognition at what tomorrow might bring. Tomorrow . . . . March 6 . . . . one year ago is when Adam suffered from a Gastric Volvulous and almost died. It was a perfectly normal day. It was a happy day. It was a day of playing, trying new foods, bouncing and playing together. Who would have ever known that something so terrible was about to happen to my baby boy. He seemed a little sick, but I didn't bat an eye at it because his brother was sick, too. But then he seemed to be miserable and wretching a lot. When Chuck got home he watched Adam and decided we better go to the emergency room. A few tests were done and it was realized that Adam's stomach had folded over and rotated 180 degrees. At midnight, emergency surgery was performed. We were warned that there wasn't much time and not even enough time for a chaplain to come and pray with us. We were at risk of losing Adam that night. I bowed on bended knee in the surgical waiting room crying out to God. Good news did come that he was fine.

I honestly think that night was more scarey for me than Adam being born with CDH and having to be in NICU. March 6, 2007 is a terrible nightmare that I keep replaying in my mind over and over. Every moment of it is so vivid in my mind.

I'm scared . . . as tomorrow is the anniversary, I'm scared that something bad will happen tomorrow.

On New Year's Eve, I found myself realizing that we haven't had to take Adam to any doctor appointments since September! Of course he has his normal check-ups and Synagis shots, but other than that he is very healthy and continuing to maintain or gain weight. He is 17 months old and developmentally is tracking at an 18 - 24 month range.

As I stumbled to the Christmas tree this morning to turn it on, I couldn't help but notice a potato under the tree. I had to step back and chuckle. I knew exactly where it came from - Adam. I forgot that potato was there, but I do recall watching him putting it there. Earlier this week, I was busy wrapping and putting presents under the tree. Adam took off towards the kitchen and came running in with a potato. He dashed over to the tree and placed his potato underneath. Oh the sweet innocence of little babes. To us that potato might not mean very much, but to Adam, it meant the world to be able to give a gift.

At this Christmas season, step back and reflect on not the grandeur of the season, but on the little things that make it so special.

[b:7c63988986][i:7c63988986][color=red:7c63988986][size=18:7c63988986]Lift your voices high and sing
Praises to the Newborn King!
Rejoice for Hope is born again![/size:7c63988986][/color:7c63988986][/i:7c63988986][/b:7c63988986]

Thought you'd enjoy a picture of Adam with Santa!

[img:181b537ae1]http://cdhsupport.org/members/weblogs/upload/22/18324199474756b1a58c276.jpg[/img:181b537ae1]

Let's go back and discuss this four year old of mine. Yeah, um . . . I told you before that he's pretty intelligent and sometimes even stumps mommy with the questions he asks. Tonight's question certainly did take me by surprise and leave me laughing hard. "Mom, do chickens have butt cracks?" What in tarnation? Where does he come up with these ideas? I know I really encourage him to use his imagination, but my goodness. . . . . "Well, Aaron, mommy has never picked up a chicken and looked at its butt, so I don't know if a chicken has a butt crack." "But mom, I think chickens must have a butt crack. I think they spread it apart and stick the egg in it to keep the egg warm till it hatches."

Good night, Aaron!

It's been a couple weeks since I've posted and oh, how my Adam has changed over the that time. I recall posting some time ago about how I had to wonder what the age of 15 months was going to bring. Oh it's here and in full throttle.

There's no doubt about it, I've got myself a little smartie! I'm amazed at the problem solving skills this kid has for his age. For example, we keep a stool in our kitchen, mainly for Aaron to use. Adam has mastered using the stool and yesterday he went and got it; took it over to the counter; climbed on so that he could get a fresh baked cookie. I took the stool away and yet he still figured out a method to get to the cookies. He pulled out a 10 lb bag of potatos and stood on them to get to the cookies.

Later on that day, I went to put my shoes on. They were gone! I asked Aaron what he did with mommy's shoes. He claimed he didn't touch them. I finally found them lined up on the kitchen counter with numerous pairs of other shoes. The culprit was Adam. A couple days ago, Chuck couldn't find his shoes. We finally found them in the pack n play. We later observed Adam tossing shoes into the pack n play and knew he had done it.

Changing gears a bit - Adam had his 15 month check-up and the pediatrician couldn't be happier with where Adam is today. His weight is in the 15-20th perceile and his height is in the 90th percentile. Very tall and very skinny! We will continue to give Adam monthly RSV shots and continue on with his early intervention services which include a dietician, an occupational therapist and a play/developmental therapist. The play therapist will come out more to observe than anything because Adam is already playing at an 18-24 month level.

It's kind of funny when I think about the occupational therapy. To keep Adam's left torse built up, we continue to do what we call baby weight training. We play tug of war with him, have him push laundry baskets around, etc. Exercises that will keep his upper body strengthened. I somehow think it must really be working as yesterday Adam pulled an 18 pound bag of rice across the floor. Wow!

Well gang, my crew is up for the day. Time to go into mom mode.

Ta Ta For Now

"When fear controls us and our faith is small, the courageous person calls to Jesus, Who is always there to rescue us."

Heavenly Father, give us a radiant courage to face the dark places in life. Foucs our minds on the light and strength of Jesus Christ. Remove all panic from us so that we may know You are always present and caring for us.

Adam didn't really go trick or treating, but he did get gussied up to go over to Grandpa and Nee-Nee's house on Halloween.

[img:7eb321ad5e]http://cdhsupport.org/members/weblogs/upload/22/2127834944729b2a2ce7d6.jpg[/img:7eb321ad5e]

[img:b73a0b807a]http://cdhsupport.org/members/weblogs/upload/22/94333961247277ececc4dc.jpg[/img:b73a0b807a]

Wow, November 1 is almost here. Where has time gone? We've enjoyed our family outings and time together, but now it's time to say goodbye to freedom and hunker down for a long RSV and flu season. No more trips to the store with Adam and no more taking him to church until next spring.

Adam received his first synagis shot of the season today and his flu vaccine. Everyone in our household has now been vaccinated for the flu. I hear say that this year is supposed to be a realy humdinger and worse than normal. All the more reason to keep Adam in the house and not take him places.

Nothing real exciting and new going on with us. My dishwasher is still broken and I'm really tired of handwashing dishes. There is a hole in the tub of it and so I will be getting a brand new dishwasher. However, I'm dealing with Sears and they have a terrible track record with me and I'm sure I won't see my new dishwasher for another 6 weeks at least.

I saw a great onesie the other day. It says "All Mommy wants for Christmas is a Silent Night". Yes, we need that shirt around here. I like to say that I'm allergic to noise. I'm not fond of it and yet I have have the worlds loudest and noisiest 4 year old!

Speaking of Christmas, I'm really getting in the spirit and we are officially playing Christmas music in our house. I do have some shopping done. Not a ton, but I think 3 or 4 people are out of the way. I need to get busy and take advantage of the beautiful 50 - 60 degree weather we're having here in Ohio. That's not typical for us this time of year. I think I'd go out and get everyone done right now if I could, but stuff isn't on sale yet and I'd kick myself later for paying the higher prices.

Till next time.

"I will praise You, for I am fearfully and wonderfully made; Marvelous are Your works, and that my soul knows very well." -Psalm 139:14


So my son isn't like a lot of other kids out there; he has problems that many others will never face in life. I, as a mother, have many struggles in my life that other moms have never even thought of. My life is not what I imagined it would be like, but that doesn't mean that it is a mistake. I hardly think God is sitting in heaven saying "OOPS - BOTCHED THAT ONE."

Rather, the almighty creator is looking down on Adam and seeing a beautiful and wonderful creation of His. He is fully aware that there are challenges ahead for Adam and for me. This is a road that was marked out and planned just for me to travel with my son. No one else is capable of it. As harsh as the curves in the road might seem at times, it is a road full or opportunities and blessings.

God doesn't see a damaged child or look at me as an unworthy mother. He sees beauty and love. He sees me as a special mom that He entrusted with HIS precious creation.

Adam isn't a mistake. His challenges aren't unfortunate happenings. God has an exciting future planned for Adam and for me. Isn't it comforting to know that God doesn't make mistakes? He has His hand over Adam and me.

"Mom, what does a robot smell like? Do they use deoderant, too." "Mom, if God made everything, then did he build our house?" "Mom, Santa and God are just alike cause they both know everything about me." Mom . . . . . . oh, mom . . . . . .

Oh my goodness - I think I am going to go bonkers with the questions of a genious 4 year old. I'm learning a lot right along with my kiddo as I have to look a lot of info up to answer his questions. Most importantly, I've learned that I'm really pretty ignorant and I don't know a whole lot about much of anything.

Why can't he just ask me how to make a batch of cookies or draw a picture. Instead I have to tell him how oil converts into energy.

[img:82ddadaa62]http://cdhsupport.org/members/weblogs/upload/22/21349409364717676cdb5cd.jpg[/img:82ddadaa62]