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