Tuesday Therapy

Jax had some occupational therapy this morning and he did really well. He seems to be getting stronger everyday.

Look at me mom!

I'm standing! Today Jax got his prone stander so after getting him all strapped in we turned him up and he was able to bare weight on his legs. I was so proud of him! He never once dropped his head. He held it up high and looked around and as you can see appeared to be pretty pleased with himself!


I do have to admit for about 10 seconds I thought "ugh I hate this" but my pity party ended quickly after seeing Jax's sweet smile. No time for sadness. His physical therapist reminded me today how every accomplishment is another victory for Jax. We might not be celebrating milestones like we did with our girls but let me tell you that this mama will never again look at another smile, another reach, another focus, another squeal of excitement or any other amazing accomplishment the same ever again. Jax teaches me everyday and I am proud to be his mommy, and humbled that God would see us fit to be entrusted with such a precious soul.

A Little Occupational Therapy

Jax has been receiving occupational therapy twice a month since February. Little by little we see him getting a little stronger.

Zephaniah 3:17

He will take great delight in you Jax. The Lord will rejoice over me Jax with His song and He will quiet me Jax with His love. --Zeph. 3:17

It's amazing to think that an all powerful God would take delight in me. Just as I delight in my own children and speak praise over them so does our Heavenly Father speak praise over us.

I found such joy the other night in the routine task of giving Jax a bath. We played in the water for a bit after his bath and he LOVED it! I pushed him around on his bath pillow letting the water flow all around him. He had a huge smile that lit up his whole face. When it was time to get out, Jax let me know right away he was not happy. His frustration and discontent made me smile because I was so delighted that he was being vocal about something. He kept making all kinds of squeals and yells. I knew then that he liked something and was mad when I took it away. Little things like this bring joy in the dark hours of the day. Even though I knew he was frustrated I delighted in the fact that he was showing emotion.

Peace for the journey

 My son's affliction is like the enemy staring at me right in the face every morning, and every day I have to remind myself with the word of God that I must not succumb to that fear and intimidation. Every day I have to find life where it feels there is only death.

Today has been one of those days. You know that day when you wake up and the world just doesn't seem right. Nature might be all aglow with heaven's sunlight but your soul feels weary. It was a darker day. One that I haven't had in awhile. I found myself feeling anxious, overwhelmed, fearful and just plain sad. I was giving in to today's battle. I give myself these days from time to time. Days to have a good cry. The tears somehow seem to cleanse my soul, my spirit.

I felt like David today in Psalm 13 when he wrote or rather asked God--"How long, O Lord?" Will you forget me forever? How long will You hide Your face from me? How long shall I take counsel in my soul, having sorrow in my heart daily?" And though David questions God and feels as if God has forgotten him in the end he finishes with telling God that he still trusts in His mercy and his heart rejoices in His salvation.

I have been reminded once again on this journey that it is imperative to take one step at a time. If I allow myself to to think too far into the future I become overwhelmed and fearful of the tasks and challenges that are not even yet a reality. I have to live in the moment and give thanks for God's present mercies and in doing so I can rejoice in His salvation. He will give me strength and bless me with peace.

I pray many things over Jax but one thing I pray for every day besides healing is that God would be merciful to him. Regardless of how His mercies are manifested, I must trust in the sovereignty of God and continually praise Him.

Forgot to Post This

 I had a pretty cruddy day this past Friday. Mommy and I drove to Chattanooga in the morning for my two doctor appointments. I had to visit my neurologist and my eye doctor. While we were in the waiting room at the neurologist I had a mild seizure that last for about a minute and 15 seconds. Mom and Dad have been concerned that I have been having breakthrough seizures so I guess this was the proof. My doctor decided that because I have gained weight that my medicine is no longer within a therapeutic range so she increased my phenobarb again. This is the second increase since September. The doctor also wanted me to have an EEG done that morning but I had another appointment to be at so I am going in the morning for my test. I may be having what the doctor says are infantile spasms.

Right after the neurology appointment my mom drove me across town to the eye doctor appointment which was pretty uneventful except they like to drop this stuff in my eyes that makes my eyes get really big. But other than that the eye doctor said my eyes are healing well, my retinas are attached and look healthy, and when I come back in January they will be able to determine more of where the position of my eyes are going to be. This is what I thought of the doctor appointments. Those things wear me out.

Hijacked!

Hey everyone! Jax here. I am hijacking this blog. I told my mom she needs to do a better job at keeping up with my site. Not like she doesn't have anything else to do.

Let's see. Where do I begin? Oh yeah, my eye surgery. The week before thanksgiving I went to the hospital really early in the morning. Way before the crack of dawn. For those of you who know me, you know that I like to sleep in so my mom wasn't sure what kind of mood I was going to be in after waking me up so early. Of course we were a few minutes late for our check in and we got lost in the hospital and my mom had to ask for directions and this nice lady pointed us to the right place. After signing in around 6:50 am we had to wait in this tiny crowded room that was kind of smelly. Mom decided she was going to pick me up and hold me so I wouldn't get cranky. I love being held. I got so excited a let out a loud excited yell that scared my mommy half to death. It was so funny I did it a second time. It was the first time for me to make that kind of noise and I think I even surprised myself.

After waiting a really long time we were taken upstairs where they put us in a private room. My nurse came in to get me ready and change me into this not so cool gown and then this funny looking man came in to talk to mom and dad about giving me something to make me really sleepy. After the nurse was finished checking me over and probing me with all sorts of things another lady came with a really big bed with wheels on it. But my mom wouldn't let me ride on it cause she wanted to snuggle with me for some reason. I just wanted to take a spin on that thing.

That is the last thing I remember. Guess I fell asleep before they took me in to see the doc cause the next thing I know I woke up back in the room I started in with my same sweet nurse. My eyes were sore and puffy, I had this poky thing taped to my foot, I was hungry and mom and dad were standing over me just staring. I wasn't a happy camper. After being awake for about an hour and getting to eat my nurse took that poky thing out of my foot and my mom got me dressed in some really comfy clothes and we headed home.

For the next week I looked like I had been in a fight with a boy bigger than me. My right eye looked like a raw piece of meat and my left eye not much better. I didn't look so great but my mom said I was still her handsome little man.

It has been almost two weeks since my surgery and my eyes look a lot better! I go back to see my eye doctor on Friday so he can check out my eyes and see how they are doing. So far I think this surgery thing where they tightened my eye muscles has really helped me be able to see more clearly. I don't think mommy has two heads anymore. Now if I could just get my brain to do what I want it to do all will be well.

I had a really good Thanksgiving day with my mom, dad, sisters and nana and poppi. I decided to be sweet that day and give everyone a break. Mom was so happy.

This week I went back to the ortho clinic where this guy drew on my feet and legs with this funny blue pencil.  Then he used this metal thing and measured my feet and ankles. Before I knew it he was wrapping my feet and legs up like a mummy. It was really cool. My mom said he was making casts of my feet. After it dried he cut it off and wrote my name on it so they can make me some really cool braces for my feet. Mommy picked out these really cool aliens and spaceship design for my braces. I should get them before Christmas. Mom says they are suppose to help my feet stay straight when she puts me in my jumpy thing. My therapist, Andrea, said I need to be in my jumpy thing everyday so my legs can get stronger. I like it. It is nice not to be laying around on the floor all day trying to see what's going on. My sisters are crazy and I like to see what trouble they are getting into.

According to what the doctors have said about me I shouldn't be doing a whole lot but my family is out to prove them wrong. Hopefully I can defy the odds and show everyone how strong I really am.