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Wednesday, October 14, 2009

Spina Bifida! YUCK!

Okay is this not the cutest hospital gown ever. Yes, I know it is a hopsital gown but I am a nurse and so I think stuff like that is cute. It was so tiny. I wanted to bring it home.
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.

11 comments:

Robert and Lindsay said...

Hey Jess! My mom said she saw you at the fair and I'm bummed I didn't get to see you. How are you? It's been SO LONG!
So I have a confession to make...I've looked at your blog lots over the last year to see what you were doing and how you were and to hear about your baby. Now, I finally have a blog of my own so I don't feel so guilty looking at yours, but I hope that's ok. Wow- what a year you have been through! You have definitely had some crazy ups and downs and I'm sure many more challenges will come- your optimism is inspiring though!
My nephew on Rob's side has spina bifida so I've seen first hand how hard it can be. Like I said though, I'm amazed with your optimism and your strength. You went through so much for him while you were pregnant and I'm sure Heavenly Father knows that and knows what you are going through now. I want you to know I'm thinking of you and praying for you and your adorable baby! I think he looks like his dad.
Chloe has gotten SO big! She is gorgeous and you dress her so cute!
Hope nursing school is going well! You are seriously a trooper with two kids and going to nursing school! WOW!
Seriously, I'm just so inspired by you to be better.
I love ya and I'm glad we can stay in touch better now that I have a blog.
Lindsay

Celee said...

Jess, Keep your chin up, Heavenly father has a plan.. He seems to be thriving! I'm proud of you! xoxo

Claire Evenson said...

I am constantly amazed when I read your blog at how strong you are. I think there is no way I could deal with all this. You are such an amazing daughter of God, wife and MOMMY.
I bet you are sure learning a lot though which helps with your nursing area. We are told to always keep learning and you are definatly doing that. Always thinking about you and your precious family! XOXO

Leesee Girlyfield said...

Oh man, Jess! I am so sorry!!! It makes me so sad to know that you and sweet little Tyson are going through so much. I don't know how you do it. You and Ty must be such amazing spirits to be given such a test here on this Earth. Good luck and we will keep you in our prayers!!!!!!

mandycamp said...

Jessica I love you so much! I'm so proud of your strength. You are doing amazing and you may not feel like it at times but you are truly an inspiration to moms every where, whether there child has a disability or not. Tyson is beautiful and he is growing and looks so perfect. Keep your optimism! Love you so much

Adam and Brittany said...

Oh Jess...he does look adorable in that hospital gown, who knew they made them that tiny?!

You and your family are always in my thoughts. You were given this challenge because you are strong enough to handle it. Keep a positive mind...you inspire me to be a better momma.

Lynja said...

I only know of one person that has Spina Bifida. you can read her story here. http://www.signingtime.com/rachel/lucys-story/

also, I know her mom is willing to talk to people about what they have faced. She always says "do what you feel is right for your child". I hope you can figure out the cath/no cath thing. also I thought you might like this blog about "strong enough to be your mom" http://www.signingtime.com/rachel/2009/07/24/strong-enough-to-be-your-mom-part-2/
keep smiling and praying. Life is good:)

Kami said...

Oh Jess...you're such a great example. Even when you think you're being "Debbie Downer" I can still see your hope and optimism shining through. You're an amazing mother...and Tyson and Chloe are so lucky to have you. I know trials show our true colors...and Heavenly Father has to be so proud of you. You're a shining example to all of us. Love you!

Bry and Meliss said...

You're such an amazing example of courage and love Jessica! Your family is so adorable, you really have been blessed! Hang in there, you are doing a wonderful job!

O'BRIEN FAMILY BLOG said...

i think its time for another chat! ok so your feelings about primaries are normal. its never easy to go there. and what your experiencing reminds me so much of so many of my own experiences. your always in our prayers. i know what that whole shunt battle internally feels like. i have been there so many times and i went through what you did, i know how that makes it feel meaningless but we both also know that its not meaningless. no matter what, you did the right thing and what you did was not nearly in vain. and the whole cathing/ditropan thing ... keep in mind you dont have to do everything they say. paula likely would kill me for not being supportive of cathing.... but each kid is different. your an intune mom. you know whats right for your child. stick to that no matter what they say. if you dont want to do ditropan dont ... hang in there. call me if you need me. and you know what you are definately strong enough!

Jaci said...

Wow Jess! What huge load for you to carry around on your shoulders. Be strong woman. You are doing just what you should-- enjoying this baby boy as much as you can and learning about all you can do to help him. I know angels are watching over you and whispering in your ears giving you guidance as Tyson's mommy. You are his earthly angel. love ya and I look up to you so much.
Jaci