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.
- 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.