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Thursday, July 29, 2010

New Blog

I feel the time has come to add another blog, one specifically related to K's diagnosis and Spina Bifida.   This blog is supposed to be varying content, but with all that is going on, I feel like I need a separate place to put it all down. So while I'll still update here occasionally on K's SB, it'll be more focused on my family and life as a whole. I also feel lots of mommy guilt, since I blog here mostly about K and leave J and H out. So I am working on that, plus there are other things I want to blog about too. :)

If you wish to stay up to date with the most recent info on K, please follow our new blog:
Our Spina Bifida Journey

This is a work in progress and is just beginning, we hope to see you there.

Wednesday, July 21, 2010

Weekend Update

J and I made it home from Girl Scout camp at Camp Trico. Overall it went well, the girls all seemed to have a blast, despite the rain, heat, bugs and squeaky beds. We lucked up and were able to stay in the unit houses and they had air conditioning! WOOT. I know, I know, it's not really camping if you have AC, but when it's this hot in Alabama you are thankful for what you get. :) I admit I went prepared, I took an air mattress and a small plug in fan (yep we even had electricity and indoor bathrooms) so I would be more comfortable. In fact it was suggested that the adults bring the air mattress to put on top of the mattresses on the bed because they were so thin. I was the only one that listened and I slept great. I bet next time they listen!

We arrived Friday evening, had our sack dinner and then the girls got to do a few crafts. They made some name tag necklaces and medicine bags to put their beads in they earned during camp. Unfortunately our campfire that night got rained out. So we headed to our bunkhouse to get settled in for the night.  Saturday morning we woke up bright and early to head down for breakfast and then out canoeing and for Indian crafts. While I did not go canoeing, the girls seemed to be loving it. They were all nervous and a little scared their boats would tip, but they did awesome. One of our girls got scared and cried and came back in early but ended up back out there and loved it. So glad she gave it another chance. 

After lunch that day, there were Indian games and archery to be done! We took a short hike on the way to the Archery site and by short I mean NOT really short lol. After learning the basics all the girls got to shoot 5 bows and one of our girls even got a bullseye! I know she was proud. Then it was off to swimming for a few hours before dinner. I would not exactly call what we had "dinner" but it was something to eat. We had what was called a "hobo dinner", which essentially was a frozen hamburger patty, corn on the cob and some thawed tater tots thrown into tin foil and wrapped up and put in the fire.Once it was cooked, you simply opened it, put together your hamburger and ate.  Ummm, this had to be the most unappealing looking food I've ever seen. If you haven't had it, I don't suggest it.

Before and after dinner, we were lucky enough to have a group of Native Americans come to our camp and bring all kinds of neat things for us to look at. Plus they ended up singing, dancing and playing music with us. It was the high light of the trip for me. We had a real Chief there and she was like a sweet ol' grandma. Just wanted to hug her. :)

Soon after it was time to head out for s'mores! It was a beautiful night, a slight breeze and tons of chocolate and yummy gooey marshmallows! The girls were exhausted and soon as they hit the bed they were out like a light. Sunday after breakfast and clean up we headed home.  We managed to shower and eat lunch before passing out for a good nap.

A few favorite pics from the weekend

Thursday, July 15, 2010

Camping Time

Tomorrow I embark on a 3 day camping trip with 5 Girl Scouts and 3 other parents.  That means the odds are pretty good right? I am trying to tell myself this will be fun, it has to be right? It's camping, how boring could it be. I have not been camping since I was about 18 and well let's just say things were different with 15 friends vs taking 5 Girl Scouts.

I am looking forward to the fun trip with Jessica.  She's so excited about all the fun activities we're going to do. She is ready for canoeing, archery, swimming and of course the campfires and s'mores! I think I am most looking forward to the Indian Pow Wow. They are supposed to be in full dress and perform. Can't wait! I hope to get some good pictures to share when I get back, so we'll see.

Oh have I mentioned how HOT it's going to be or the good chance of rain all weekend? This is the part I am not looking forward to. I can deal with a little rain, but do not want bad storms or rain all day.  Say a prayer for us will you?

Monday, July 12, 2010

Healing

Miss K is doing great, her incision is healing properly and she got her stitches out today.  I was worried how she would react, would it hurt her etc, she just kinda of laid there like it was no big deal.  :) We return to UAB in 3 months for a MRI so they have a baseline of what her spine is like since the surgery. We were hoping for a 6 month break but I would rather them be thorough and know exactly what is going on with her.

Thanks for the thoughts and prayers!

Sunday, July 11, 2010

Middle of July? Already?

How is it almost the middle of July already? It's been a busy summer and will continue to be for us. I guess that's good in some ways and bad in others. School will be starting back in a month, bittersweet for me.  H will be going off to Kindergarten, J into 5th grade ( umm what??? ) and it'll just be K and I at home. That will be a change for sure. I am looking forward to the quiet(er) days!

Tomorrow we head down to UAB for K's 2 week post op visit. Hoping it all goes well and everything looks good and hope we will not be back to see Dr W for 6 months.  We do have to make another trip the following week but to see the urologist. I am nervous about tomorrows visit, not quite sure why.  K seems to be doing great here at home, eating, sleeping, and moving around as normal....but there is still so much unknown.  So if you could say a quick prayer or send some positive thoughts our way, it would be appreciated.

J and I are preparing for Girl Scout camp this upcoming weekend. I am looking forward to spending some one on one time with her (along with the rest of our troop lol) and I know she is too. The part I am not looking forward to? Camping....well really the no air conditioner part, it's kinda hot down here in Alabama! Never the less, there is camp fires planned, an Indian Pow Wow, canoeing, archery, swimming, crafts and games. What else could be more fun? I hope this trip gives J a lifetime of memories.

J's 10th birthday is coming up August 2nd, and I still find that hard to believe. How is it I am old enough to have a 10 yr old? Well, OK I am old enough to have a 15 yr old if I started having kids when I was 18. However, I digress. Sometime between all the other stuff going on, I still have to plan a party and get ready for school to start too. I wonder if I can buy some time in a bottle somewhere?

Wish us luck for tomorrow!

Thursday, July 8, 2010

Two Months Ago

Two months ago, my world seemingly got turned upside down. Two months ago K was born via c-section after trying for a vbac for 12 hours and not really progressing. Today I look back at that and am thankful because we had no clue about K's Spina Bifida.  We also do not know if her lipoma could have ruptured or not during birth as it was half filled with spinal fluid. The last two months have been stressful, happy, sad, worrisome and so much more but right now I feel at peace.

K had surgery approx two weeks ago and sometimes I am still trying to wrap my head around that. My 6 week old baby had major spinal surgery.  She could have been paralyzed, she could have major bladder/bowel issues, she could have required another surgery to put a shunt in her head.  She could have been. She's not paralyzed, had a very short term bladder issue and she did not need another surgery.  Miracles happen. Prayers work. Believe it.

When K was 4 days old I found a support forum for people living with Spina Bifida or parents of children with Spina Bifida:  Spina Bifida Connection .  This was my saving grace. The people there are inspiring, helpful, friendly and most of all been there. To be able to connect with other moms/dads who have been there and done that, to know I am not alone in this journey is priceless. Reading their stories, blogs, and helpful posts in regard to my own situation, I learned so much.

I learned that K having Spina Bifida is not the end of the world, just a different world. Her life isn't going to end or not be fulfilling because she has a birth defect. She will go on to lead a fulfilling life filled with love, joy, friends and family.

I am learning to live in the here and now and not in the future. No one can predict what will happen in the next 6 months, year or 10 years and rather than worry and dwell on it, I am living life and enjoying time with my 3 girls.