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