Saturday, November 14, 2009

Spina bifida clinic


Well, We have been a little crazy around here so I have been a little neglectful on my blogging. I will try to catch up though. Christopher had his Spina bifida clinic last week that we go to every 6 months. On a whole it was a pretty good day. We were there though from 7:45 to 1:30. Chris was not a big fan of that. The nice thing is that we stay in one room and all the doctors and specialists come to us. He is almost 2 so the challeng there is christopher having the whole "stranger anxiety" thing going on. But, we worked it out and we got everything done. Robert was able to work from home that day (thank goodness) so Spencer got to stay home with Daddy!
We saw so many cute kids there that we haven't seen before. Lots of little boys. We saw one adorable 7 yr. old boy who was in a wheel chair ( he had no mobility in his legs at all) he was the funniest thing. When ever Christopher started crying he would play peek-a-boo with him to make him happy. Christopher love it. He was just a happy easy going kid. It's cool seeing boys that are older than Christopher with SB it kinda helps me imagine what he will be doing a few years down the line. Another little boy we saw there was 4 1/2 and he was cruising around with crutches. He had a little more mobility than the other little boy. I can see Chris kind of being like that. Although they say Christopher may be able to at some point walk with just his AFO'S (braces), which would be awesome. Anyways, I talked to this mom quite a bit, it's always nice to talk to mom's that are going through the same things you are. But, this mom's story started out a lot different thatn mine. She went into labor with her little guy without knowing he had Spina Bifida Or Hydrocepholous! Could you imagine that? Not being prepared at all!?! She gave birth and it wasn't until a few hours later that SHE not the doctor's noticed the lesion on his back.... WHAT? How does that happen? So of course he ended up with Spinal menengitis because they didn't protect his spine from infection at birth. What a great mom though, she is just making sure her little guy has the greatest future possible.... and he is such a happy little boy too.
The last mom I met was a new mom of a 4 mo. old little boy. This was her first child. You could tell everything was al little new for her. But, with all these mom's we have one thing in common..... We will fight to the bitter end to make sure our son's have everything they need to have the brightest future. This mom was getting ready to have her 4 mo. old have his 3rd shunt revision surgery. Bless her heart, that would be so hard to handle. I hope and pray this shunt takes and works perfectly for him. We talked a while, and I just felt like giving her my email so that we could get to know eachother.I feel like I have a little more experience with all of this so if I could help in any way I would love too. I knew no one that went through this before me. It is a very lonely place to be I will tell you that!
Anyways, So Christopher's bladder is looking a little worse than last time. He still has reflex on one side and a little swelling. We will just monitor a little closer and in 3 months if it is worse we will have to go back on antibiotics or maybe start cathing. We shall see!
Also they casted his feet for new AFO's which he hated!!!! Last year the AFO's cost us $1,700 after our insurence paid their portion. This time we were a little nervous to get the total.... but our new insurence ROCKS!!!!!!! Our portion is only $300 and some change! We could not believe it. So exciting. Then we also got a prescription for a reverse walker and therapy to learn how to use it. it's going to look like this

It is so tiny and so cute! The greatest thing about it is he can be on the same level as all the other kids. He never plays with the other kids because he is crawling and they are walking. That really breaks my heart, so I am really excited for him to be able to start walking. And we know he can do it because of the walker his daddy made him for home. Which by the way all the doctor's thought that was awesome. My husband is amazing!!!!
Well, I'll stop for now but that's our update. I have alot more to talk about so I will post again soon. To all you mom's that have kids with Spina Bifida that may read my blog... let me know who you are! I would love to get to know you and share stories with you all. I think you are all amazing women! Every mom is an amazing woman though :0)

81 comments:

Julie said...

Auntie Julie is so grateful for this fabulous update, Auntie Becky! Love seeing how my boy is doing!

And I'm SOOOOO proud of you--YOU are an amazing mother! You need to post more often, though--you've got a lot to share! Wish we lived closer together...distance stinks! Love you, sis!

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I agree..distance stinks. I would love to live closer to all of you and lend my support and hugs. I think you are an amazing family and Christopher was so lucky to come to your family. I believe you have the true SMITH grit and determination--and that also includes a happy and positive countenance. I truly believe your Smith grandparents (and the others you have) watch over you Becky. I know how excited my mother was to be a grandmother and how she looked forward to special times with grandchildren. I believe she got a head start with each one in heaven. Thanks for you most touching thoughts about your son and the clinic. Hug everyone for me--aunt Diana

Adrienne, Scott, Hanna and Hayden Trigg said...

Great walker! I hope it goes well. We are so happy to have Medicaid for Hayden to help fill the holes with our insurance. Have you all tried for that? In Texas it is not based on parents income. You might want to try it too. We are so happy to have some additional help. Christopher looks great and glad that no big news. Hope his bladder continues to improve as he grows!

kjtroxel said...

I loved reading little guy's updates! Becky, you are such a great mom. I am certain the girl's you met in the Clinic lounge were inspired by your genuine happiness. I am so happy that Christopher is doing well. I loved the post with the homemade walker. His little determined spirit will get him so far in life! Love it!

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