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.

I've Been Ev-a-ry Where, Man....

I can't believe Christmas is just around the corner. The last month and a half have seemed to fly by. October was an extremely busy month for us. We had birthday parties, visits to the pumpkin farm & apple orchard, halloween parties, school parties, trick or treating, doctor appointments, soccer games & practice, dance and gymnastics, physical therapy sessions, orthopedic clinic, haircuts....phew I am exhausted just typing it all out. I am sure I have left something out but I am sure you get the gist of the busyness.

Jax had some rough nights for a few weeks in October and it about wiped me out. Especially with all I had to do running here and there and every where. I think most of his rough patch was due to belly pains and gas but I think we are over the hump and back on track finally. At one point I thought he could be teething and he may have been but the little fella still hasn't gotten any of his teeth in. I have been consistent in offering baby food daily now and he is doing better each time it seems. However, it is a very slow (and messy) process.

As far as development goes we are still at about the same place we were a month ago. There is still no mobility, no reaching for toys, not sitting unsupported but he does appear to be taking in more of his environment. I think he is paying more attention to what is going on around him. We are doing our best to get him up off the floor and more on the level of his peers so he can observe and be part of our daily lives. He really likes looking at red, black & white toys. Things with high contrast are easier for him to see I think.

Which brings me to his eye doctor appointment the end of October. This was our second visit to the eye doctor and we met with the head opthamologist. He was extremely nice, informative and compassionate. He actually held a prism up to my right eye so that I could actually get a glimpse of how Jax sees the world. It was like having double vision and the only way I could focus on anything was to close one eye at time. Which is what Jax is actually doing. His brain is unable to "tell" his eyes to come to the center so he compensates by using one eye at time. This is causing his eyes to turn outward (exotropia). In some cases glasses can be effective but not so in Jax's case. He would have to have such thick lenses that it would be impossible for him to keep them on. At this point our only option is strabismus surgery. It is a pretty common and minimally invasive surgery that Jax will be having Friday, November 16. The doctor will go in behind his eyes and tighten his muscles hoping that it will help bring them more to the center so he can have a chance at seeing the world correctly. We were told that he may have to undergo more than one surgery to correct it but if we don't do the surgery eventually his eyes would permanently turn out. If all goes well the surgery on each eye is 15-20 minutes and he can come home the same day given he does well with anesthesia.

He will be having another neurology visit this month. Those are always my favorite appointments to go to (insert sarcasm here). His seizure medicines were increased the last appointment and Jax seemed to be doing well on them but lately he appears to be exhibiting some more breakthrough seizures. But it is so difficult to determine what is a seizure in little ones. You wouldn't believe it unless you are familiar with seizures but even such small things as lip smacking or chewing can be signs of a seizure. It is so nerve wracking. I watch every little movement or non movement and it makes me down right paranoid most of the time. Usually when I go to these appointments and the doc asks if he has had any seizures I sarcastically laugh on the inside because I am like how the heck am I suppose to know what you say is a seizure. So my answers usually are probably so. I am thinking about taking some video footage and just showing them that so they can see for themselves what is going on.

Another big step we have taken in this journey was taking Jax to his first orthopedic clinic. The orthopedic doctor was also very nice. He said that Jax's muscles and hips appeared to be fairly loose with good movement. He didn't see any real problems at this point. During this visit we also met with a rep who measured Jax for his new kids cart (wheelchair/stroller). I was amazed at how far they have come in the development of this kind of equipment. It really does look like a stroller. Of course the seat and support systems are different but it doesn't look so institutional. We were even able to pick out which color we wanted. So as much as I hated even having to look at these things for my son at least I got to have input on how the thing was going to look. Also discussed getting small braces for his feet/ankles but we are not ready for those yet. Those will come when he is more weight bearing. Jax will be getting his new set of wheels in about four months. It takes a long time for everything to go through insurance and for it all to be ordered to meet his needs. The stroller should fit his needs for about 3 years. And I am hoping this will make him more comfortable when we are out in public.

I will try to post an update on the surgery as soon as I can. But I always like to leave you with some current photos of the little man. Oh, I almost forgot to mention that the first of November I finally got his hair cut. He definitely looks like a little man now! Such a cutie head.

 Visit to the Pumpkin Farm

 First time falling asleep in the high chair

 My sweet angel in the morning. Look at that hair!

 At cousin Jack's Ninjago Party

 Enjoying riding in the big boy seat at Target

Finally the new do!

Thanks for stopping by!

Misty

The Last First

We made it through September. Last month was a time of celebration, reflection and bittersweet moments. Jax turned one on September 13th. A day a year ago we weren't even sure we would be celebrating. He is our last baby. His birthday will be the last first birthday we will celebrate in our family.

The first birthday is one that is anticipated and usually celebrated with grandeur. Over the last six months I struggled with what to do for Jax's birthday. I questioned if I should even have a party at all. It was hard not to focus on all the milestones Jax had not reached. I wondered what is the point in celebrating because this is not the life I want for us or my son. I felt as if I had nothing to celebrate. But once again after soul searching and putting myself back in check I realized that I do have a reason to be thankful. It may not be the things I thought we would be celebrating for Jax but we had a reason to celebrate none the less. We have a son. A beautiful GIFT from God. We weren't able to celebrate lots of milestones reached but we were able to celebrate his life. To say living with a child with special needs is difficult is an understatement. It is so hard at times to describe to someone what it is like and how it feels. I came across a woman's blog one day and she shared a story about a woman's description of living life with a special needs child. The story, Welcome To Holland, brought tears to my eyes, and really was the reason I started looking at our situation in a different way. Does it mean I don't have the negative thoughts and self pity at times, absolutely not. But it did, however, shed some light on my perspective.

Back to birthday stuff. I LOVE planning parties and was so excited to finally plan a boy party! You may have seen pictures posted on facebook, but I decided to have a "Little Monsters" party for our little monster, Jax! If you have ever met Jax, you will agree that he is so SWEET and LOVABLE. You can't help but want to snuggle him and kiss his chunky cheeks. He can also be a down right stinker at times as well. So the theme felt like it fit not to mention it was so much fun to plan. The pictures speak for themselves.

Hope you enjoyed looking at some of the pictures from Jax's Party. There were several more I wanted to share but for some reason blogger is not uploading them correctly.

Jax had his one year well visit last week. I am happy to report that he is FINALLY registering on the growth chart for his weight. He is at the 5% for his weight at 19 lbs; still small but we will take it. As for his height and head circumference they are still not registering on the chart but he continues to grow and make his own curve. He is now 27 inches long.

Thank you to everyone who stops to read our blog and keep up with Jax's progress. Every time I hear about someone reading I am thankful that there are those of you who truly care.

For my sweet Jax, if you ever are able to read these entries one day remember that you are loved!

Praying for Rain

The other day I was looking back through emails and messages that we received over the last year regarding Jax. It must just be that time of year since we are approaching his first birthday and the anniversary of when our lives changed forever. So many of you wrote, called, prayed, sent things and to this day all those acts of love are not forgotten.

One particular email I came across was one sent to me by my sister inlaw back in January. She shared with me a devotion about Elijah. The devotion meant something to me today as it did back then. I will just share the devotion with you.

"There is nothing."  -I Kings 18

Elijah was a man who hoped perfectly; hoped against hope until the abundant answer came.  He continued, in the very face of darkness and perplexity, to expect, because the very God of hope lived in him and expected through him.  And he was not ashamed, for it came to pass the seventh time his servant said, "Behold, there ariseth a little cloud out of the sea, about the size of a man's hand," and in a little while the heaven was black with the clouds and there was a great rain!

Canyou count God faithful when only the still small voice speaks?  When there is neither wind, earthquake, nor fire?  Can you start when you see the cloud no bigger than a man's hand?   Can you say:  " There is nothing," but I wait on Thee.  My mind is peculiarly dark regarding the way I am to take, but Thou knowest.  Unto Thee do I look up!"

"There is nothing"- though the raindrops needed sorely and so long

Have been promised by Jehovah, by the Father true and strong.

And the sky is blue and cloudless, and the earth is parched and dry,

Yet no showers are forthcoming from the reservoir on high.

"There is nothing-" but the prophet knows and trusts his Master's word;

He is not a senseless idol, but the mighty, powerful God.

He has seen His wondrous working, he believes Him faithful still;

So he humbly waits in patience for Jehovah's perfect will.

"There is nothing"- oh, how often doth the enemy declare,

Nothing for your constant wrestlings; nothing for your cries and tears.

And the faithless heart says

"Nothing," through deceived she ne'er has been,

For the little cloud so longed for, at the seventh time is seen.

"There is nothing,"- but there shall be: God is still the Great "I Am."

He is NOW Almighty, faithful, and forevermore the same;

And the tears, and cries, and wrestlings, have been recorded on high;

Not forgotten, nor neglected, to be answered by and by.

-James Boobbyer

"Get up, eat and drink; for there is a sound of abundance of rain!"

There are so many times I feel as if I hear that still small voice like I have many other times in different situations but this time it is over shadowed by the loud reports ("facts") from the doctors. The tears of desparation that I have cried have seemed to go unnoticed by God. I want to believe in that voice I hear but fear overwhelms my soul most days. It is the darkest place I have ever been in. I cannot even begin to describe what all this tragedy has done to our lives. 

However, it is Words such as this that remind me that just maybe there is still hope. That there is still a compassionate and loving God who really does care and hear this mother's heart for her only son. I am so afraid to hold onto faith and the unseen for fear that it will bring disappointment. I pray that I can have the faith and hope of Elijah and believe until we SEE the cloud the size of a man's hand that brings with it an outpouring of healing for our sweet Jax. 

Nine Month Update

Since our last post Jax had his nine month well visit which consisted of his normal weight check and measuring. He also had to get one shot. Normally he would have gotten two but because of his seizure activity back in the spring he is not allowed to have the DTAP until he is seizure free for six months.

Jax is still taking 1tsp phenobarb a day and 2ml of kepra twice a day to help control seizures. Since he started on the kepra we have not seen any seizure activity and hopefully this will continue as his body naturally weans off the phenobarb as he gains weight. At his last well visit:

Weight: 16 lbs 2 oz--he is in the 5th%
Height:  25 5/8"--he is in the 3rd% (still keeping an eye on his growth)
Head Circumference:  15 1/8"--still not registering on the charts but the size of his head is STILL growing and making progress.

Our pediatrician said that in spite of all Jax has been through and the prognosis given he was pleased with Jax's growth. He is continuing to grow in all areas. Some are slower than we would hope but GROWING nonetheless. Jax is going to be 10 months old on July 13th and developmentally he is about at the 5 month mark an improvement from his last 4 month mark.

It is all bittersweet in that you want so much to see your children healthy, normal and thriving but in this journey we have been learning to grab hold of even the smallest signs of progress and hope that we will continue to see improvement.

Jax has been doing great in his therapy sessions. He actually grabbed hold of a toy on his own this weekend and he has been showing signs of possibly trying to roll over from back to belly. When he is in a good mood, which is mostly in the mornings, he has been smiling a lot more and I even heard him laugh a little. Although it was not the contagious belly laughter that babies have it was a little chuckle and I will take even that!

I finally caught some videos of him smiling and having some play time with Eden this morning. Enjoy!

Looking back at this video I should have just let the boy have a lick of the lollipop but I am so paranoid of germs. Afterall, it was an organic lollipop that should make it okay, right?!