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!