Well here is the dreaded update. I don't really want to give it but feel like I would be leading my fellow blog stalkers astray. Our Friday, Primary Children's appointment did not go as hoped for but things could always be worse and we are still extremley blessed compared to where we could be. Every Primary's appointment good or bad, seems as though I am being punched in the stomach. Awake up call, that Tyson has spina bifida and all that comes with it. I feel sad and wonder can i do this, will I be strong enough to be his mom. I suppose this is why we start as babies. If heavenly father just through us a teenager it would be rough. Instead we are given a sweet innocent baby to teach and be taught. Most mom's I have talked with who have spina bifida kids tell me to savor these moments while he is a baby when everything is so normal. When peeing and pooping your pants is normal and when not walking is normal. It hurts to think this because he seems so perfect right now and I just want him to stay a baby forever so I don't have to see him struggle. He is growing way to fast! Now I probably seem like Debbie Downer, But most days I feel as though life is perfectly normal and then I have a few days where I struggle. Back to primary's, his urodynamic test showed high pressure in his bladder. Not a good thing. He pee's in his diaper but is not emptying his bladder fully. They claim he is a constant drippler. Although I am not sure I agree I have never seen him dibble, more like a steedy fountain that shoots usually all over me or him. Now I believe he does have some feeling, because every time it would show his bladder was full he would cry and then a steady stream of urine would flow out. Now his real ultrasound looked good. No urine backing into his kidney's. A great sign, so I am sent home to start a cathing program which involves sticking a long tube up him to empty his bladder and a yucky medication called ditropan, which has side effects such as flushed face, constipation and danger in sunlight. Sounds fun right! I am upset because I am not sure I feel like it is the right thing to do. Dirtopan relaxes is bladder which causes him to not go on his own. Does this not seem like we are regressing not progressing. I just don't really understand the purpose. As much as research I just don't get it. I don't want to start cathing just because the famous words "all spina bifida kids cath". I want to start with good reason. Any suggestions spina bifida moms. So cathing is the least of my worries. For now I will probably start until I have a better solution. Next Tyson's head is slowing on an upward curve which concerns them. This is what kills me inside. I did the surgery and went through heck to prevent this. They said if we can make it to 9 months without a shunt we will likely never need one. I have faith it will work out but also ever day feel nervous as I look at his cute head. Is this a test of faith. Now I am have to remember the surgery still helped so many things. They told us he would not eat or breath on his own. He is and growing like a weed. For now we pray fro no shunt. Thanks for the prayers. I truly believe there are strength in numbers.
2 weeks ago