a new day

Nothing is ever easy I keep saying…

Daddy and Aden praying together at Flag time during AWANA!

Zach getting ready for his G-J button Change at Egleston

However there are nights like last night that just reminds me that God is certainly with us. Aden came in from his wonderful day and didn’t want to eat, watch TV or anything, all he wanted to do was go to bed, I did something that I never do, I let him have a cup of Kool-Aid and go to bed. So Adam, Zach and I sat down for dinner. Zach did so well; he ate oatmeal, soup, and peanut butter crackers. He wanted to be with daddy so daddy and Zach had a great family time. Oh Aden slept till 6:39a this morning, he was tired. I am so glad that he rested because today he has school.

We are wondering if some of his pain and all… his screaming and frustration has to do with the old tube, like something was wrong with it. Cause even though he is still screaming and frustrated it is so much better now that he had the new tube, so as much as I didn’t want to put him in anesthesia again is now that I know that he NEEDED his tube to be changed. Thank God they didn’t let him wait the two weeks. I would have been without my mind, because I would have lost it!

Our family minus Aden....dressed up for AWANAs

In Sunday school we are learning that God doesn’t belong in a box, there isn’t a box that is big enough for me to put him in. One of the verses that I found it one that I now love and that I hold dear, it makes me realize even more that God knows what it is like to be a mom and He knows that sometimes moms (and others too) need extra encouragement and that we need to know that it is all going to be okay. I don’t mean that it will all be perfect, I mean can you imagine how boring life would be if nothing ever went wrong. However, what I do mean is that there is nothing that God can’t do and there is nothing that too much for Him (which is the tie in to the second verse). The two verses that I we have been focusing on are Isaiah 40:11 and Jeremiah 32:17. God carries us close to his heart and He leads us. It is nice to know that God holds me and that He gathers me and loves me so much that He knows that I am an emotional person that needs the love, hugs, and confirmation that I am not alone in all of the things that we are going though. There is nothing to Hard for God…. why am I worried about all the things of this world because He can do it ALL.

Isaiah 40:11
He tends his flock like a shepherd:

He gathers the lambs in his arms

and carries them close to his heart;

he gently leads those that have young.

Jeremiah 32:17
Ah, Sovereign LORD, you have made the heavens and the earth by your great power and outstretched arm. Nothing is too hard for you.

One more MAJOR THANK YOU!!!!!!!!!!

Okay so I have a person that I need to say THANK YOU too, a person that God placed in our life for one purpose, supposedly the one purpose. This person has stepped out of that role and into many many many more, sometimes I struggle with it because I know that God has been AWESOME by placing her with Zach and in return with me. She is one that I have been able to talk to, pray with, cry and ask questions that I would have asked my mom if she was here, she has always answered them the best that she could and listened.

This is for you... I will not say your name here but you know who you are!

• Thank you for coming and playing with Zach, bringing markers and a coloring book for him and the movies, Aden loves Jonah as well.
• Thank you for the game that was brought to Aden, we played it downstairs while we were at the hospital and the wonderful thoughts that were said to me.
• Thank you for being one of the only people that I have been able to cry to and vent to about all of the emotions and feeling that I have.
• Thank you for calling us and checking on us and for calling and asking questions for me.
• Thank you for praying with usThank you for praying for us
• Thank you for all of the things that you have done
• Thank you for being concerned about us and about me!
• Thank you for the love that you have shown when you didn't have to.
• Thank you for saying the hard things, making the hard suggestions even when you knew that it would hurt and that my heart would crumble

So we are HOME!!!!!!!!!!!!!!!!!!!!!!!!!!!!! It has been forever and I am so sorry.

After 13 days in the hospital Zach is at home, still having a few issues but we are home. He isn't able to stand really and isn't able to walk at all, he is still so weak, he is barely able to crawl and crawling with the pump is even harder. He ate dinner last night and some crackers this morning. We are all delighted to be home, ALL of us are delighted!

So now that I am home I want to say THANK YOU to all... I am not going to say names because I didn't ask permission but you will know who you are.

THANK YOU:
-- to all of yall who called me and checked in by phone.
-- to those that let me call you past 9pm so I didn't use my mins on my cell phone
-- to those who brought food
-- to the one that brought me some diet coke and food at 1:40am, even though she didn't have makeup on or know where she was going. I will never forget it.
-- to those that immed me
-- to those that left messages on caringbridge and facebook-- to those that were willing to keep Aden
-- to the one that took Aden to the playground, to school, and wherever else
-- to the one that allowed me to cry over the phone to them, even though they didn't understand -- to the ones that came and saw Zach and played with him
-- to those that brought stickers, markers and other art supplies to Zach

I know that there are a thousand more but those are the ones that came up... so now that we are home pray for the whole SSI thing, we were denied because of income so we have to do the KAtie Beckett/deeming waiver, man.... that is some paperwork and it all has to be signed by a doctor of course. PRAYING I can emotionally hold it together!

4, already?

So Tomorrow, October 1st, is Aden’s 4th Birthday. I am not sure how that has happened. I mean it seems like just yesterday that he was born and that he was a little baby wearing 0-3 month clothes and size 1 diapers. Now he is a BIG BOY. He is 41 inches tall and 30 pounds; he is wearing 4s in pants (blue jeans) and 4t/5t and X-Small shirts and big boy undies. I can’t believe that he all of a sudden got to be so big.

He is in preschool and loves it; he still 4 weeks into it wants to live there and asks every morning if we are going to school and/or if we are going to church. He loves having friends and being involved with other children his age. He has also started Cubbies in the AWANA program. He is loving learning his verses and getting to learn the sign language for all of his verses. I stand in AWE of how God works.

Every day when I pick him up he crawls into the van, kisses Zach and then goes to his seat. Even with all that Zach causes him to change and be flexible he loves him. Aden is best educator that I have ever met. He is able to tell others that his brother has a tube and that he gets tired easily and that he can’t have milk or any milk proteins. He is able to tell that he can’t have apples or watermelon and that you have to check the ingredients before he will take it and eat it. He has found sports… he loves to watch basketball and football and loves to watch it with daddy. He gets excited and cheers on the teams (He even yells at TV like Daddy). We have gotten to go to several Falcon games as well, he loves going to the game although his attention isn’t that long and with all the noise he wants to “go home and watch the game” He says that he wants to grow up and be a judge (to help say what is right and wrong) and play football, sounds like a wonderful goal!

My little boy is 4, How did that happen???

MITO AWARENESS WEEK!

Roughly 2 years we started on a journey that I didn't know would take this long, be this serious or be so full of nonanswers. I took Zach in because he wasn't nursing from one side and I noticed that the muscles in his neck were tight and he had trouble turning to that side. I totally expected to be told not to compare him to Aden, that Zach was a different child. The Ped looked at him and proceeded to check his muscle ton and do some tests... this is when our world offically changed forever. Because of the muscle tone and not being able to nurse, Zach at 2 months old was labled as Failure to Thrive. I was heartbroken to go through this again but I was confident that I could, that we could handled it. We slowly realized that he wasn't gaining and through many hospitalizations, we got an NG tube, a G tube and everything else.

Finally we decided to do genetic testing, we found out that he is missing part of chromosome 1 (1p35.2 to be exact) and we were delighted not that he was missing it but that we had an answer, then they tested me and I didn't have it, Great this is what is wrong with him. They then tested Adam and guess what he had the deletion as well, so that means that it isn't the cause of his problems. We stayed several months trying to figure out what to do and him not really gaining (he is 17 pounds barely) and begining to have major issues with muscle tone and other things. We finally decided more testing was due.

After a long wait we found out that he has defects in the mitochrondia in complex 1 and complex III. We aren't sure what it means but we do know that it shows us that all the heart ache and the issues have a name.... my sweet baby boy has MITO.

DETAILS:
The mitochondria act as the “powerhouse” of the cell to produce energy for the body to live. Mitochondrial disease is an energy metabolism disorder that affects babies, children, and adults of all ages, races, and gender. Experts agree that at least 1 in 4000 children and adults have mitochondrial disease; however, "Mito" may be under diagnosed until improvements in diagnosis and awareness occur.

Symptoms of “Mito” vary in type and severity, and may include profound muscle weakness and fatigue, seizures, gastrointestinal dysfunction, developmental delay, vision and hearing loss, and unexplained organ failure.

Today there is no cure for mitochondrial disease; treatment is focused on energy conservation and vitamin therapy.

Mitochondrial dysfunction has been related to other diseases including autism, diabetes, Alzheimer's and Parkinson's disease and aging.

FACTS:
• Every 15 minutes a child is born that will develop mitochondrial disease by age 10.

• It is estimated that of the 4 million children born each year in the United States, up to 4000 develop mitochondrial diseases.

• At least 1 in 200 individuals in the general public have a mitochondrial DNA mutation that may lead to disease.

• There are over 40 identified types of Mitochondrial Diseases and believed to be over 100 variants of mitochondrial diseases

• In the United States, more than 50 million adults suffer from diseases in which mitochondrial dysfunction is involved. Mitochondrial dysfunction is found in diseases as diverse as cancer, infertility, diabetes, heart diseases, blindness deafness, kidney disease, liver disease, stroke, migraine, and the toxicity of HIV and other drugs. Mitochondrial dysfunction is also involved in aging and neurodegenerative diseases such as Parkinson and Alzheimer dementia.

• The World Health Organization (WHO) calculates that neurodegenerative diseases, also associated with mitochondrial dysfunction, will become the world's second leading cause of death by the year 2040.

Update

So yesterday I took Zach to a marathon appointment day... we went and dropped Aden off and school and headed out to the the Emory Clinic for both a GI appt and a Neurology appt. Here is the mini update, if you want more details please ask me!

GI appt: He got a new button placed it, there was lots of blood when they pulled the Mic Tube though, there is lots and lots of irritation as well. They are having me give a double dose of Nexium for 5 days to see if we can help with the healing of all the tissue that is irritated and angry. I also have to go by the pharmacy and pick up a cream, it appears that inside the stoma he has a yeast infection, how that happened I do not know. We are also going to be doing some clean out today, I know not the best thing to be doing but if it keeps us out of the hospital then I will do it.

Neurology: This appt is one that has no answers really... It was a hard appt for me and one that I wish that I didn't have to go to. Although I know that it could be worse and that many others have situations that are worse, this is my son and it is hard on me. We talked about his legs turning in and about the braces that we can't seem to figure out what to do to help him. I was told that it is very very very common for mito individuals to have this, that anything we do is going to be a temporary thing. So we are getting 1 new specialist.... an Ortho. They want Zach's hips and spine to be looked out, just to make sure there is nothing wrong with them. If there isn't there is nothing that we can do for his leg/foot turning in everything is a temp fix. Kinda glad to know just heartbreaking in a way.

We talked about Zach's low grade temperatures and she looked back at his blood work and all and so we are getting our 2 new speicalist an Immunigiolost. I don't know what this will entail and I am amazed that we are getting 2 more doctors.

She also said that I needed to look at getting a new wheelchair for him (his old one is only 6 months old). I am going to look to see if I can get his chair modified, I am not willing to accept this yet. The reason why is that his muscle tone in is chest has decrease so much that he has chunks of time that he needs to recline, our chair has now tilt at all. He is struggling even with the harness to sit in it at times. I didn't know that he would need it and they didn't either till now. As hard as that is they also are putting me in contact with a social worker (she says I never should have been doing all this alone). We have to get the whole deeming waiver thing started. Sigh, my heart is crumbling. Needless to say I didn't sleep well last night, with thoughts of medicine that we need to buy but can't afford, new doctors, etc. My mind needs an off switch.

So prayer for those of yall that pray, which please don't stop praying for us:

• Zach's medication, we need to figure this out so we can start it and not push his MITO appt back.
• Aden, please pray that his birthday doesn't get over looked with all the things for Zach, his birthday is Oct 1.
• All the new appts and that I can get it all together
• That the resources will come available and clear so we can provide all the things and support that we can do the boys.

MEDICATIONS SUCK

So one of the things that help with MITO is a drug, well the FDA considers it a supplement called CoQ10. Many people take it as a supplement at roughly 100mg per day. The script that Zach has is for 800mg per day and I just got a call back that says that they can't get the brand that the Mito Doc wants and that the only way that they can do it is to get a powder and compound it up, I asked how much that was. He got off the phone with me and figured it out and then called me back... anyone ready for this, no seriously are you really ready for this it is going to be $400.00 a month for that one drug that insurance doesn't cover. Keep in mind that this isn't a liquid form (which has been shown to absorb better) that is compounded.

So I am overwhelmed to say the least! I had been told that it was expensive and I knew that going in that insurance probably wouldn't cover it but 400 a month is beyond what I could even have imagined.

If you are one that has been praying for us, please please please pray for this. Hearing this today is hard since Zach is stumbling and falling, feeling miserable and running a mild fever. It makes it all so real and hard for me. Yes I know that it can/could be worse but right now for me it is hard.