Thursday, August 6, 2009

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.

Saturday, August 1, 2009


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.