Dec Already

So it is December 2nd already... I can't believe how fast time is flying. I also can't believe the number of phone calls and emails and shout-outs that are asking for ideas for the boys. There are people that asking for small ideas, money ideas, and gift ideas so I am going to post here and on caringbridge. I don't know who reads what but I don't want to send a mass email out because we aren't looking for anything in particular, this is one of those posts that if you were asking it is for you.

Ideas for Aden:
-DVDs- he loves backyardgins, superheros, scooby, etc. We haven't bought new DVDs in a while so he doesn't have many new releases.
-sports
-cars
-legos
-Days out (Monkey Joes, ChuckeCheese, etc)
-twin bedding
Please NO spongebob though

Ideas for Zach:
-Stickers- he loves loves loves loves stickers. This is prob his number one thing that he does
-paper
-Art stuff
-color wonder things
-sleepers (18 months to 2T), preferable those that have buttons or snap at the legs, so we can get the tube in and out.
-pillow cases and crib sheets

Money Ideas (just for those that asked)
-Aden's school tuition
-cleaning services

Time Ideas
-Taking Aden to the playground (Zach can't go)
-Taking Aden to the movies (again Zach can't go)
-Watching Zach so we can do things with Aden
-Preparing meals or gift cards so we can not worry about dinner and have that time together.

Household things:
-a new vacuum (one that has a heppa filter in it)
-storage or something to organize the toy room
-Storage container or file folder things for Zach's artwork

I am sure there are million of other ideas but this is what I came up with, I will update it as the month goes on.

Thankful for Family

So I had an appt today and it made me stop and realize that I am very blessed to have a great network of family and friends to help me/us with Zach. People that do care about Zach and Aden and have helped us beyond what I could ever thank them for. I am so delighted to know that I am not on this journey alone and that no matter what happens we have AWESOME people here with us.

1st, I need to say that I have AWESOME in laws, today you hear so many bad stories about in laws but truthfully I am blessed with the best in laws ever. I am proud to call them mom and dad. I love them both so much and they have walked the world for us and cont to do so. They love the boys so much and have been a huge help with both of them.... Aden loves being over there. I could never say say how much they have done for us. They are wonderful. They kept the boys for me so I could go out on Black Friday.

2nd, we have awesome Church family.... they have stepped up so much helping me with Aden, helping with cleaning supplies and with stickers. The have helped with smiles and hugs and with the prayers. I am so sure that there are things that I have missed but I am so honored to have them as part of my Christian Family.

Sigh

well, things aren't easy.
WOW where to start, 1st I am so sorry that I haven't updated this often, I have been doing the caringbridge cause it has been a little easier but I wanted to write here and add some prayer request on the bottom of this post/update.

So we have been in and out of the hospital lately... we were in the hospital for 13 days out at home for 8 and now have been in patient for 10 days. This trip has been hard and we don't know what all is going. This might all be part of his MITO and it might be things that we have to learn how to handle and move on.

One of the hardest things about this is being separated.... I miss my husband, I miss my son, I miss tucking him in at night and having dinner with them. I keep telling myself that this is just for a season.

I used to think that offering to help was enough but I am slowly realizing, actually I really know that sometimes you just have to step up and do something. Something that is on my mind, It was overheard tonight that "Adam and Jen have so many people that want to do things but they aren't willing to tell them what to do" Oh my, Can I vent on this for a moment? Have you thought about what we are going through and what is happening.. our family has been ripped apart, half at home and half at the hospital. We have always been together for meals and for bed times and now it doesn't happen that way. We don't know talents or abilities or what you might be willing to actually do. This frustrates me... if you know of something, or what to do something, please just do it. I have been so wrapped up in Zach's care that I forgot to eat today, if I forget to eat what makes you think that I know what to tell you to do for us. Please Please please just do whatever your heart leads, whatever God wants you to do.

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.

Speciality Appt

So today we had an appt with the MITO PA. She is the most wonderful person that works for a doctor’s office, I mean the best one out of all the medical office people that we deal with ( I love her and our PT). I mean she is nice, loves Zach and is wonderful at explaining things, she answered all of Adam's questions and all of mine and even asked Zach if he had any questions. She used to be Zach’s NEURO PA and we lost her to this MITO doc. While I will miss her I am so thankful that she will be explaining things to us and that she is there to help other families through this journey.

I know that God has been in this whole thing but now it is all setting in and I am beginning to wondered how in the world. I mean I know that it will work out but on the same hand it makes my head spins.

So here is the update for those that were waiting on the Specialist appt. update. Zach does have MITO we aren’t sure what type but he does have the diagnoses as MITO, we are waiting for some more of the tests to come back to see if we will know or if he will always have plain MITO. Having this diagnosis may open up some doors for some assistance but we are still waiting to find out, it does mean that he qualifies for EI next year when he turns 3. I am not sure what it means but I am sure that I will find out more as we go. Finally getting this doesn’t change how we treat Zach and honestly it doesn’t change what we do for him. The main thing that this diagnosis does is it allows us to know that we aren’t fighting something that we don’t know about. Although a lot is unknown about MITO and all the things that go with it, at least I know that I am pushing him for a reason. It also allows all the comments that people say to now roll off, although I will hear them they will no longer hurt as badly cause we do know that Zach has a medical issue and that we are doing all that we can do for him and that we have been doing all that we can for a long time.

I walked out with a script for CoQ10, which is a supplement/medication that they want him to be taking, it sounded like they wanted us to get it as soon as possible. This sounds easy but I am having to figure out what to do, where the nearest compounding pharmacy is and then I am going to have to take the script see if insurance will cover it and if not, we have to find the money to pay for it. There is a chance that this CoQ10 will not only help with his energy levels but there is a chance that it will also help with the pain that he is having. Besides the amount that it costs the other drawback is the time that it takes to be effective. They cautioned us that it could take up to a full month to be effective.

I also walked out with a script for Syringes which the home health people won’t deliver because they say they don’t carry the small ones. I have to come up with a system to give him all his meds and get the times all down. Since he now has medications that are given 4 times a day. So this is also one of my battles that I have to figure out and win… how do I make sure and keep up with all of the medications that I have to give Zach?

Honestly my head is spinning so I am going to put the prayer request now for those that I have told to look here….

• Pray for Adam and I as we learn about MITO and teach Aden and all those involved.
• Pray for insurance covering this medication (CoQ10) or for the money for getting it
• Pray for money for the med-alert and for the services involved
• Pray for money for the foundations that will allow us to be connected to others with this condition

I am sure that there is more but my head is spinning so much I can’t think of all of it now.

So I am not crazy....

So all along I have thought that I was crazy, well I knew that I wasn’t but I wondered if Zach’s condition was in my head. I heard people saying so many things that I doubted if I was doing the right thing. I felt (feel) led to do all the things that we are doing: OT, ST, FT, PT, and play therapy. I saw him having trouble walking, not saying words appropriately and all that, be tired all the time, running low grade fevers. However, when you hear other things from people it makes you wonder if you just missed the boat somehow. The other day I read a status update off of Facebook and I started bawling, I mean I was delighted about the growth and the positive things that were in the status but I was so sad that at 6 months things her little one was weighing what he was and doing so well (please don’t read that I wanted him to be doing poorly) and was close to outdoing Zach on several things. I know that Zach is different and that God blesses him differently but that was the 1st time that I saw something and it hit me that Zach has his own timeline that is going to be different from everyone else’s.

This week as been hard…. well this past week I should say. We had something that we were doing for Zach everyday so we were busy a lot. We had a great PT session at the park, a great ST session and FT session, and a wonderful Music Playdate as well as a Play therapy session. We were blessed by the Starlight Foundation to go to a Falcon’s Game, taking the boys with us. They each got their own shirt and their own seat. It was AWESOME. However, Zach has been paying for it every sense. He screamed all night Sunday night, he has decreased bowel sounds and he was miserable. Today he has a fever, all from muscle fatigue. He is fighting to put his braces on because they touch his legs; he is fighting to change clothes because it means he has to move to help me put them on. He isn’t able to sign because he is tired. Last night he was so tired he couldn’t eat or even cry. Ever been so tired that you couldn’t communicate because it took too much energy?

So going back to me thinking that I was crazy… I have been told for so long that I haven’t been doing enough for Zach. That I am not going to the right doctors or getting the right tests done cause if it was their child they would know and they would demand for it to be done. It is hard to know that people think that you aren’t taking care of your son. This year we got referred to a doctor that was our last chance, he made sure that we knew that we were doing what we needed to for Zach and that we were doing everything right, which was nice to hear. He also made sure to let me know that it wasn’t my fault and that we were doing all the things that he would be telling us do. Roughly 11 weeks ago we took Zach to get some tests run, they did a number of things like taking blood, skin samples, spinal fluid and muscle tissue samples and they were running things on them. We finally got preliminary results that show that Zach has defects in the mitochondrial (complex I and complex III) as well as a few other abnormal things. They are still doing more tests but the short and easy answer is…. we have an answer…. Zach has MITO.

We don’t know what that means for him, it will be something that we deal with all the time and it is something that we will be learning how to handle for the rest of his life but we have an answer. He has been on one of the medications given to help this for about 10 weeks and it has been helping so much, I can’t begin to even explain how much it has helped. There is another one that they want him to start on and it is something that we are going to have to fight to get covered or we are going to have to pay out of pocket for. It is expensive and it is something that is supposed to help and the docs want him to be on it. So after Labor Day we will be finding out what we need to do to get it covered for Zach. I also need to set up appointments and try to figure out what things we need to do now. We don’t know what it means for school or anything like that but I feel like the world has been lifted off my shoulders and that I am not crazy and I am not a bad mom.

Just the thoughts in my head...

Do you ever wonder how in the world can I make it through all of this? Well yesterday was one of those days… it was a very emotional day and this morning is just as emotional for some reason. I sit here at 6am wondering why I can’t sleep, why do things have to be so hard? How am I supposed to know what to do and how to do it?

So for those that don’t know… yesterday Zach drank a whole sippy cup of whole milk, so the whole day I dealt with a rash, fever, and a fussy Zach (his tummy hurt). It was because of my on Stupidity, so I have been taking it hard. Then I noticed that Zach’s heat intolerance has been getting even worse, walking from the car into church or into the house, is now causing him to be flushed, sweating and miserable. So my question is can it be winter already, please, my little one can’t do the heat and it is breaking my heart.

People don’t understand the heartache that I have had, I mean they say “he looks so good” or “he is doing so well” or “he looks normal”. In my heart I say yeah he looks normal cause we have been doing therapies (OT,PT, ST, FT) while some are new, we have been doing the PT since 3 months old. We have stayed on top of it and I have gone crazy trying to make sure that he has all the appointments and things that he needs to continue to do so well. I mean he looks so healthy cause he has a feeding tube that is on continuous feeds and although he isn’t gaining fast he is no longer losing and he is gaining albeit SSSLLLLLOOOOOWWWWWLLLLLYYYYYY. He is gaining and growing and he is thriving. He has medical needs but that doesn’t mean that he is depressed and worried about life, to him this is normal and he is thriving and smiling. To him all this is normal and he is happy with life and how God made him.

Sometimes I want to sit down and I want to ask people if they understand?

Do they get the finances? Do they get the medical bills? I mean do they understand that on top of all the things that we have like the house and car and all that there are bills for each ER visit and each surgery and each hospital stay. There are bills for the equipment that he has to have and so we have to get it. There is the money for each co-pay and for gas (driving at least 23 miles one way) and for parking. I hate having to decide if we can do this or that because we have been to so many doctors appointments there isn’t money for anything else. I hate telling Aden that we can’t go to the playground because Zach will overheat. I hate telling Aden that we can’t go to Monkey Joes (or fill in the blank) cause Zach is sick or the money just isn’t there this week.

Do they get that waiting sucks? I mean we are 6 weeks out on waiting for tests and we still have no idea, some people have waited over a year on these tests. Waiting is so hard, you don’t know when you will hear but you want to know if finally you will know the name of whatever it is that is causing your baby pain. You want to be able to tell people yes, he has ______? I want to know that I am doing all that I can do, I mean how do you know that you are doing all that you can if you don’t know what you are dealing with. We are always waiting… waiting to see if meds work, waiting for the doc to call, waiting for results, etc. Waiting sucks

Do they get that you are always doing something, let me rephrase, Worrying about something? First, I know that I shouldn’t worry; I know that God is in control, so I really try to no to but still sometimes, some days it is harder than others. I mean do they know that you have to be listening for a pump to go off, aware of the heat, aware of the ingredients of the food that they are near. Do they know what it is like to wonder if the person that has offered to keep your children means both of them or only your “healthy” one? I wonder/worry if I have done enough training or if I am going to get a phone call. Worrying that you are talking too much about your children? Worrying that you aren’t doing all that you can or all that you should be doing, worrying about the money to do things like therapy and equipment.

Well...

Until a few seconds ago, I had totally forgotten that I put a prayer list and a request list that I had put out for Zach. It was something that I had done to get a list for people that were calling me every hour or so about things for Zach, I was overwhelmed with life and I figured if I could stop having my phone ring that maybe things would get better. Well, it turned out that I was just tired and emotional and all that I needed to do was rely on God and not on myself. I totally forgot that I put the list out there, until a few seconds ago that is. God has blessed us for sure, with the little things but it has been awesome to see the little things that God has given us… a cantaloupe here, a cake there, a toy here, a bag of hand me down clothes there. God blesses those who call upon HIM!!!!
So here is a mini update:

• We decided that we were going to step out on Faith and enroll Aden into preschool, Aden is so excited and although I am not sure how it is all going to work out I know that it is the best thing for Aden. If you ask Aden what he will do at school, he will tell you “my ABCs, color, paint and met new friends” so he is delighted about getting to go this year.
  Zach’s surgeries in June and July went pretty well.
• The Muscle Biopsy, skin biopsy, lumber puncture, blood and urine that they took we are still waiting on results, we are 6 weeks out. They told us that it would probably be 6-8 weeks till we might have answers to so we are waiting. We aren’t sure why but Zach had an allergic reaction or something after that surgery and we had to go to the ER and were admitted for 24 hours. He had a low blood sugar and was vomiting and had no muscle tone. I was delighted to be at the hospital (which you know isn’t the case normally)
• The surgery in July (new tubes in his ears and a sedate ABR) went great. They were able to get the old tubes out and put the new tubes in. The result of the sedated ABR was that he can hear the way that he should and all should be fine. Since the new tubes we have noticed that he is trying to form more words and that he attempting to speak more, granted is still sounds odd but he is attempting which is what we care about.
• Zach’s birthday was great, we managed to stay out of the hospital for his birthday and we had a great time going to visit some of my family. He got to spend time in a hot tub (which he loves, his muscles need it) and he got to play. It was wonderful
• One of the biggest things for us is that the neurologist put Zach on a new med and it is for energy. We have been on it for almost 2 months now; we had to work up to his max dose. However, now that we are on the dose it seems to be helping. He is not taking as many naps and is super active. It is frustrating to a point but then again it wonderful to have a “normal” active toddler. We are learning how to deal with it and how to help him handle the bad days.

So new Prayer requests:

• Test Results and the treatment for whatever it is that Zach has.
• That we can handle the people’s reactions that people have had and people that made. Zach has something wrong that we don’t know and that you can’t necessarily see. That doesn’t mean that nothing is wrong and it we have to work on educating others but I need prayer that I can handle people with GRACE, God’s grace.
• Therapy and Equipment, we are dealing/struggling trying to get the things that he needs
• That the gas prices will stay lower, with respite, preschool and appointments, therapy and doctors, the amount of gas that we use is fairly high

Wish list for him:

• Paper and Stickers (he uses these daily)
• Outside stuff (playground stuff, outside toys)
• lunch boxes (he uses these for respite and for church, his stuff has to stay cold and since we use icepacks the zippers tend to bust after a few months)
• Ice packs for lunch boxes
• Long short sleeve shirts (Zach wears a 3-6 month size but we have to put him in 9-12 month stuff because of the length so if you can find ones that are long or can sew)
• Play food, kitchen stuff
  

I am sure there are plenty of others but I can’t think of the top of my head.

Thank you for all that have been praying and all that have done things for my awesome children. Yall have been a Godsend and I thank God upon every remembrance of yall.

Frustration

Just because you can’t see something doesn’t mean that it doesn’t exist. It frustrates me when people think that because Zach is walking that he is okay, they miss the fact or overlook the fact that Zach is only 16 pounds and 4 ozs at 2 years old; that he doesn’t really have any words (the only word he has is yes), that he has a g-tube, that he has braces, that he on average sleeps 19-22 hours a day. He gets exhausted doing normal everyday things, he has muscle termors and sereve pain.

I am not babying him; He isn’t screaming or crying because I have babied him or because I hold him. He screams and cries because he has no other way to communicate. If I babied him then I would jump and react every time he falls, which some days is very often. He would always be in my arms.

We are waiting for results of testing and in the mean time we can just treat what we have seen and what the docs say that we can treat at this moment.

Please take a moment to watch this:

http://www.youtube.com/watch?v=t3C6848Dr2w

Where to start? It has been so long since I have been able to sit down and post anything so I will try to do a quick update.

I guess the 1^st place to start is that my littlest boy is now 2… how can he be 2? The time has flown by. He is 16 pounds 4 ozs, he is 30 inches tall and overall he is doing well. He can walk and is learning how to communicate, albeit not verbally but he is signing and using other things to communicate. We went to my aunt’s house for the 4^th of July weekend and to celebrate Zach’s birthday. We had a great time swimming and having a great time. My Aunt bought him a wonderful present a Kitchen. The boys play with it daily and it is something that they play hours with. It is wonderful!

I signed Aden up for pre-school… it is one of those things that we are going on faith that it will work out. Aden is so ready to go, he wants to do stuff and be involved so I guess in AUG I will become a mom of a child that is going to school. I can’t believe that he going to be going. This means that come August I will have Aden at Preschool Tues, Weds, Thurs and then I will have Zach at respite care Monday and Tuesday. So one day a week I will be completely childless which is weird thought to me.

Aden and Zach went to VBS this year but let me tell you Aden hit the age where he was super excited about going. It was so so AWESOME to see and hear the excitement that he had for it all. He was so excited about getting to go eat snack with his friends, play, and do a craft. He is still talking about it 2 weeks later. Every year they do a penny drive (all money is accepted though) and this year all the money that was collected was donated to The Hope House, which is where Zach goes for Respite. When it was all over the children had brought in 288 dollars. So the Hope House is getting 288 dollars, a 50 dollar gift card and a DVD player (which is what they wanted with the money). My heart just cried when I realized how much the children had done. God is Great!

Aden went back to the dentist and I have to say it was such a better experience this time… he would let them do all the thing that they needed to do.

The boys love each other and it is apparent in everything that they do. Aden is helping Zach do things and trying to make sure that Zach is always taken care of. I am praying that love and support never leaves.

The boys calming down after playing.

The 1st thing that I want to say is that Zach got approved for a session with The Littlest Heroes Project: http://www.littlestheroesproject.org/Littlest_Heroes_Project/Home.html It is an AWESOME organization that hooks families up with photographers that will take pics of their child, children and families. I am praying that we can get Zach’s 2 year pictures done through them, Zach has been through so much and I would love to look back at his smile and at the love that the boys have for each other. I also would love to have a family shot, which we don’t have since Zach was born. It would be nice to have one of those. I am super excited about it… I can’t believe that he gets to be part of this.

So it is summer here is Atlanta… It is HOT already and the boys are loving being out in the sunshine. Zach’s body, however, doesn’t… this is one of the hardest things for me yet. We didn’t deal with this last year, last year he wanted to stay in and since he couldn’t sit, crawl or walk he was happy with it. Well, this year he is doing awesome and can sit, crawl and even walk…sometimes not well but he can walk. The heat drains his body and wipes him out, I am not talking about he just gets hot I am talking about he gets to where he can’t sit, stand, or walk. He asks to go to bed and sleeps hours on end. It is a new battle that I am unsure how to handle. I want him to be outside with his brother and I want him to be “normal” but his body revolts and that is so hard to deal with as well.

Cutest pic ever, I love the belly and the button!!

Since he can’t go outside much and since he has been having so many bad days lately, I am trying to be a good mom and find stuff for the boys to do. I am trying to find those things that they can do together, which is hard. Zach can’t sit at the table with Aden cause he has to have his seat so we can use the floor and the bed… so painting is pretty much out (although I was wondering if we could do it outside). We have found that Aden loves, loves, loves to help his brother, he picks stickers for him and he helps him with the markers and crayons. It is something that I strive to do because I want the boys to have some normalcy in their life. I mean between Gi, neuro, PT, OT, ST, and all the other appointments life gets a little depressing, I get overwhelmed. So I have decided that we will color every day. Now I color with crayons but the boys love markers and so we do coloring. Zach is working on holding it and having the strength to get it to the paper (he doesn’t have enough strength to drag it on the paper), Aden is working on coloring in the lines and telling mommy what should be what colors (on her pic). He loves to pick out the crayons and the markers for Zach and for me.

Until recently, Zach didn’t know how to interact with his brother, however, he knows now that he can fight back and that Aden can’t take everything from him. AWWWW, Brotherly love!!! Aden loves him, checks on him, holds his hands, helps me calm him when we give meds and while I am doing his feeds (well getting them ready). He is an AWESOME big brother.
I have found that he can out first thing in the morning when it isn’t so hot and if he stays in the pool or in the shade that he has roughly an hour maybe a little more before he can’t do it anymore, then he has to go in and rest till later on in the afternoon. When he goes back out he can only go out about 30 mins or so before he starts to turn red, have his head pouring with sweat and starts to overheat. I bought a $10 cheap pool from Wal-mart and the boys love it, it is AWESOME for them and they are having a blast. Aden loves the water and is having blast with it. Aden goes out to it at least 3 times a day, he loves to jump in it and he loves to put the balls in it as well. Lots and lots of fun and I think that he would live in it if he could Zach is working on walking without his braces and he is working on getting in and out of the pool, this is a very hard thing to do for him.

Oh my, I had the realization the other day that Zach is 23 months, do you know what this means? It means my little man; my little blessing is going to be 2 soon. WOW, I can’t believe it, time has flown. I still look at him as a baby… maybe it is because of all we have gone though. I am so blessed with him. We were told that he would never sit, smile, or walk. He is doing all 3. He is a fighting and every day I look at him and I am amazed that he is my little boy

So several of yall ask me what can we do what can we pray for so here is a list of things that we are trying to do or get done.
Prayer:
· Preschool or schooling opportunities for Aden
· Surgery and procedures in June for Zach
· Surgery and procedure in July for Zach
Birthday Ideas or Things we are working on:
· Sand/dirt Toys (trucks, shovels, anything that can go outside and stay outside)
· Outside toys, we have a bit of shade that Zach and Aden can play in, we have a little play thing but that is it.
· Bath toys (the boys love to play together so this is something they can do to cool off and be together)
· Bubble bath and bath crayons, gels, etc
· Cooking stuff: play foods, plates, pans, etc
· Working on: getting pillow cases made for Zach (kids prints or something that is for him)
· Working on: getting a cooling vest, I found a way to make one but I can’t sew and it sounds super difficult
· Working on: getting cooling neck wraps, I found a way to make these as well. (Either homemade or bought.)A new crib mattress, we have to replace the one that he has now

Just my thoughts....

So how does that verse go, “Don’t worry about tomorrow for tomorrow has enough worries of its own” or something to that nature. Man that is one of the hardest statements to understand…. I mean I get that tomorrow has enough going on and all that, but not worrying about today, gets me.

How do we not worry? I mean things happen in our life, weekly, no daily, no without warning at any moment. Stressors come into our lives and they set up camp and when we finally get them to go away, we find out that they shared how much of a good time that they had and all their friends come… which means we STRESS OUT!

God tells us not to stress, not to worry and not to rely on ourselves but to rely on Him for it all. God tells us that He never gives us more than we can handle and that He will never leave us.

So why is it 6:00am and I am typing instead of sleeping… because I am human and my heart and head hurt. I am worrying about things that I have no control of and doubting the decisions that I do have control over.

This week has been a really really hard week, the week before was AWESOME, 5 great, awesome, wonderful days for Zach and then Saturday hits and bam, a bad day, not too bad just bad. Then Sunday hits and it is a really bad day, well the week didn’t get better.

My little boy that is learning how to play and run like other children his age has been teaching me a lot about things and as he is teaching me, I keep hearing God tell me not to worry that He won’t leave us and that we will make it through. Zach has been really unstable this week and because of that he has been falling and getting hurt, yeah I know that he is a boy but come on, if I hear that one more time. He shouldn’t be covered in scraps and ant bites because he falls. When he falls he can’t get back up and sometimes he has problems flipping over to crawl so when he fell into a fire ant hill, he couldn’t get up and since he non verbal he couldn’t tell me and since he has some sort of delay he didn’t cry more than the once, the initial fall. I was right there, I mean I walked over to help Aden but I was right there and still he is covered with ant bites. Now I know that I live in ant country but still… I am so sick of hearing people say well why was he near the ants in the 1st place. Okay people they were in the playground and I didn’t know they were there, it only took secs and you know what ants are everywhere here!!!! The whole thing makes me Angry and upset, I have enough guilt without people being stupid and saying stupid stuff, what mom/parent wants to see their child suffer. I can’t hold him and protect him every sec but I hate to see him the way that he is this week too. It makes things hard for me because there are times that he looks really really good and trust me I know that he is doing well. I love the fact that he is walking, unstable as it is, he is walking. He is communicating with us and all that so yes he is doing well. But when you look at him all the time you see every fall and everything that he is trying to do and can’t and the frustration on his face cause he can’t talk and can’t make his body do what he wants it to do and it makes you wonder how do we not worry, how do I not dwell on things and how do I hang in there and know that the rainbow is coming when all I see is the rain, the storm that is here now.

We also find out that a set of very important appointments that were supposed to be next week were cancelled, they doubled booked and we had to be moved, so they are now in June, I can’t believe that I have to wait that long to take Zach in and for him to have this done. So as it sits now we have a RMR and an appointment, a muscle biopsy, Surgery for ear tubes and a sedated ABR all coming up… what was that “don’t worry”, I am trying. Each time we do a procedure, an appointment, go to the ER or surgery we have to pay a copay, granted that compared to others we are extremely Blessed but it still adds up. Each time we go and have to change medications or anything like that we have to pay for it. There is equipment that we need to get for Zach like a cooling vest and thing to help him in the heat and again, we are blessed for what our insurance covered but there are things that aren't covered. Then there is the doc visits themselves, how do you get there? Several of our doctors are at Egleston/Emory Children’s Clinic which is about 45 mins away from us, so we have to drive there and that is gas and time. We have 3 docs that are in that clinic and most of the time appointments can’t be coordinated to be on the same day because they never seem to have slots available, so we drive back and forth. Plus because of being on the Emory campus, we pay for parking each time that we go. Then Zach is in OT, PT, and ST… he does OT weekly, yep every week and then ST he does every other week and PT he does every other week. Because of some things, we are doing OT and ST privately which means that I have to go and take Zach to CHOA for them, granted we are able to go to Fayette instead of Atlanta (15 mins away) it is still time consuming and take gas to get there. Every therapy sessions we have and almost every appointment we have for Zach I have to arrange someone to watch Aden, not that he can’t go to them all but can you expect a 3 year old to behave, be quiet and calm for hours on end… it is hard but most of them I can’t take him with me. So I have to find someone to watch him, which I have been able to do but I feel like I am pawning him off on people and I feel horrible cause we never know how long appointments are going to be.

I feel horrible because I stop and get myself a Diet Coke (I love my diet coke), that is money that we don’t really have, I mean we do but we have so much for Zach that it really needs to go towards that. I feel horrible about setting up a dinner/lunch meeting with some friends, or just going out with friends because that cost money that we don’t really have just to spend. I feel horrible because I haven’t gotten to go to see some of my friends in a while and when I do get to do stuff I worry about things that are beyond my control at that moment. I feel horrible because I am tired and exhausted all the time and at times I am overwhelmed. I mean how do you celebrate birthdays, friendships, and all that when you know that at any moment the walls can come falling down

So I am trying to remind myself to SMILE, to hang in there, not to worry for I know that God has it all under control, I know that God has been here all along for Zach and for our family, I know that he won’t leave us either. I know that He sings over me and that He collects our tears, that means my tears, all of them, I can’t imagine how big of a container that is. I know that God is AWESOME and Powerful and that He will never leave me or forsake me. I know that His timing is perfect and that His grace is sufficient for me… it will help me and guide me. I know that He will give me a peace that others won’t understand. I am Thankful that he gave me two little boys that have AWESOME smiles, I am thankful that Aden gives great hugs and that he loves us so much. I am thankful for my AWESOME hubby, who works hard daily so I can stay at home, who tries not to get upset when I buy a diet coke, who plays with the boys and who I love so much.

I am very glad that I am not in control of the world the world would be in so much more chaos than it is now.

So another procedure for Zach

So this week we went to the Doc on Monday and found out that Zach is going to have to have his Tubes removed and new tubes put in and then he finally gets to have a sedated ABR… I am delighted about that.

Anyway onto today’s procedure, I wanted to let you know that I have the sweetest most AWESOME little boys in the world. Aden wanted to make sure his brother was fine and that all was okay and he was sad that Zach had to go back to the hospital but since he got to go to Pa-paws he was okay with it all.

Zach waiting to go into the hospital this morning, he was so so so sweet! I love him!

All I can say about Zach is that he is so brave and so sweet. Zach loved seeing the techs and he stayed still for the whole test.

Zach waiting to have the procedure done

Waiting with mommy to have more pictures taken, I have lead on and so he is hot up against me and he was uncomfy

This is what they could see while they had the fluro on! That is Zach's insides

Now we wait for the results and wait for the other tests and Doc appointments

There is no such thing....

As an easy week here, in additions to Zach’s button coming out multiples times, going to the ER multiple times and going to the Docs, Zach’s pump has been going off constantly because of a new button/PEG, Zach is having no energy and if he is awake he is crying. However, last night Adam came home and we had a great night, we played in Aden’s room with all of his cars, trains, and planes, then we came back to our bed and we jumped and had a good time on it. We had a blast. It was a good few mins of happiness to be followed by this chaos.

The feeding bags connection doesn’t like staying connected to the PEG (g-tube. This means that it is popping unconnected and leaking. It happens a lot… well last night it happened again… at 1st I panicked because all I saw was this dark red stuff on his diaper and on his onesis. When I looked I quickly realized that it was just stomach gunk and that it wasn’t blood or anything to be scared or panicked over. I quickly started the water for a bath and got Adam to help me take his backpack off, he was so soaked with stomach gunk, I didn’t want to put him near me to get it all over me. I picked him up and got him into the bathroom.

I undressed him and I found this…. Why??? So we cleaned him up put the nysatin on it and hoped and prayed that it would get better.

Sigh, it is never an easy week!

So here is the long story….

Zach has been having a long week anyway, he was getting tired, falling and was getting overheated easily we were going through it all like we normally do it was all good. Wed we get back from OT and Zach lays down for a nap before Church, Aden and I went to play. When Adam got home we went to get Zach up and ready for church to realize that Zach no longer had a button in, we couldn’t find it anywhere. It had been out for anywhere from 2 to 3 hours at that point. We called the doc and had them paged, or least we thought that they had been paged. We got everything ready to go to the ER if they told us to but in the mean time we went to church. I stayed with him and never got a phone call, we picked up dinner and all came home. I put Zach to bed and I hopped online and I im’ed someone who might know what to do, she urged me to go the ER, I then called the doc again and within 5 mins he was on the phone telling me to go immediately. So we make it to the ER roughly 6 hours after it happened. They were able to get a foley in and after waiting forever to get a Fluro done (an x-ray where they would put dye into the button and make sure that isn’t leaking and that it is in the right place) However, Thankfully it was and so we finally got to go home at 5:30am. I had to go into the GI Clinic and we were able to get a button back in YIPPEEEE it is all over!
Friday was an uneventful day and we had a great time… We went to dinner with the whole family and came home. Adam and I were looking forward to take Aden and Zach to an event at the Hope House (Where Zach goes for Respite Care) they were having a race and Aden was going to do the Tot Trot and Zach was going to get to go in his wheelchair and race with the others. So Adam , Aden and I get up and have our morning routine and when it is time to go I try to have Adam go in and get him (just something we try to do on the weekend) I walked to throw the trash away. I hear this “Zach, NOOOOOOOOOOOOOO” Of course my heart STOPS and I go running around the corner. Zach is standing in the crib, smiling and fine… Adam is on the floor with his head in his hands. I look and I noticed that his extension and the button is out. Oh man, I thought he went to bed at 9:15pm and it was 8:30am, how long had it been out? We tried to get the replacement button and emergency kit in, of course it didn’t work. We were able to call Pa-paw and Grandmama and they took Aden with them and we headed to the ER.

In the ER, they were so slow, it was driving us nuts, every sec we waiting every min we were in the ER waiting room they weren’t trying to put it back in and it was closing and he was getting NO nutrition at all. The doctor tried several different ways to get the tube back but it wasn’t able to, so they called the GI docs and they came done immediately. They both tried multiple times and different things can couldn’t get it is in either. They gave him some versed, in hopes that they can get him to let them really push and prod his belly and all that. The tried and tried and tried and nothing…. The doc as she is pulling it out tells that he was going to have to be admitted and surgery will be on Monday, Zach moves and it pops into his stomach. This was an hour of trying to get it back in. Adam and I just looked at each other and said “Thank you God”. They were not able to get the PEG in or a button in but they did get the foley and got one big enough that he could feed through so we were able to go home.

On the way home we stopped at ate, none of us had eaten that day and we were all starving. We stopped at KFC and I got Zach a honey BBQ chicken snacker. The boy ate the whole thing minus two bites of chicken. He totally enjoyed it and it was a gift from God to see him eat. Of course he hasn’t eaten since!

With the temp foley it has some issues… it doesn’t have a med port so it is really hard to give him his meds and because of how it is put in, the pump went off Saturday night every hour, I got very very little sleep, not to mention that I am nervous and scared that it is going to happen again, his tummy is so tender and red.

So I am praying this week is better, easier and calmer... Which while I was writing this, Zach woke up to the temp foley was out. Man, already.... we put the Emergency PEG in and taped it down. I hate to be the one to take off all the tape but still, no ER visit!