Tuesday, August 08, 2006

12) The end of the first year . . .

Wil was unable to sit up by himself and he couldn't crawl either. He spent a lot time either like the pic below or with pillows supporting him or in his 'saucer'( similar to a walker). Anytime Wil needed to move or change positions we needed to do it for him and of course we needed to move his feeding pump as well. We also had him sleep in the same position as below, because of his constant vomiting . ( so he wouldn't choke on it)

Saige and Wil Christmas morning.(2000) Wil was beginning to balance well while sitting up. We found this quite miraculous considering he didn't have any abdominal muscles. Saige was three and Wil was just about ready to turn one.



After Wil's last extended stay at Riley he was hospitalized a few times at a local hospital for dehydration. Wil vomited about every day. He has acid reflex and at the time a very sensitive gag reflex. He was only being fed through his NG tube (nasal gastric) and was not eating orally yet. If Wil would vomit too much within a day we would start to see 'warning signs' and would usually place pedialyte into his tube instead peptamin jr. and would switch the rate at which he was normally fed. Most of the time we were able to catch the dehydration but there were several times that he needed to be admitted into a hospital. Wil was also on a continuous feed from the time we brought him home, 30 cc(1 ounce) every hour, 24 hours a day. Every few hours we would have to add more food to his tube so it would not go bad (especially in the summer). I was very sleep deprived. Around that time I remember wondering if things would get easier or if they were going to stay this way. I never once was prepared for the long haul. In my weak mind I thought that this (Wil's problems) would be temporary and after a few months everything would be normal. Needless to say that year (the year 2000) depression started to run my life. It started right before I became pregnant with Wil, escalated during the pregnancy and by the time he was a year old I was suffering from depression. I never acknowledged it until a few years later and didn't try to get any help until a few years after that. My depression is another story and most of it is rather depressing ~ ha ha! Some day I'll write about that!
Anyway, things seemed to be getting better and there was more time in between each hospital stay. It felt good to have Wil home!

As I look back reflecting on the first year I can say that I am so happy to be done with it. It was probably one of the most difficult years in my life. As difficult as it was, I did learn a lot and I know that it has made me a stronger woman. I know as a christian that the enemy (satan) only wants to rob, steal, and destroy. His efforts to rob Wil of his life, steal Saige's childhood, and destroy our marriage and family did not go unnoticed. I will always claim victory in Jesus that Wil is alive, Saige is not dysfunctional, and our marriage is stronger than ever. It's so easy to see how people are destroyed through this. How easily it is for satan to shred people into pieces. I have no clue of what the future holds and I don't know what to expect with Wil's health or for that with my other two children or Bryan or even myself. I do know that I wouldn't of made it this far if it wasn't for God's grace and mercy. Through Him all things are possible, through Him I have my peace, and through Him I have my hope. A verse that I have carried with me for years is Romans 5:1-5 'Therefore since we have justified through faith, we have peace with God through our Lord Jesus Christ, through whom we have gained access by faith into this grace in which we now stand. And we rejoice in the hope of the glory of God. Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance: perseverance, character, and character, hope. And hope does not disappoint us, because God had poured out his love into our hearts by the Holy Spirit, whom he has given us.'

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