Hope and Hugs

Today was cast #6 for Kiya. Kind of hard to believe but they we were ready for our normal to come back to us. Cast off is sadly not our normal anymore.

We showed up bright an early and honestly I didn't have a whole lot of hope. You see we have never really gotten good news on cast day. So I was expecting the to hear pretty much the same thing we had heard for the last 5 casts. The one thing I was super excited for was being able to hug my friends.

I have said this before but I am so very blessed to share this journey with some amazing women and two of them and their kiddos shared cast day again with us. I have shared so many cast dates with Catie and Sarah that it just doesn't seem right if we aren't together for a new cast.  We were all surprised when Chrissy showed up for moral support and some super great hugs. We were definitely wishing our friend Kelli among others could have been there too but that just wasn't doable this time.

Okay back to the story...We typically are 3rd to go back to surgery on cast day. They tend to take the kids in order from youngest to oldest so 3rd has been our place, we get it. We accept it. Well to our surprise we got bumped to 1st. One other little cast kid was sick and couldn't make it so they bumped Kiya up.  We have been first only once and that was on cast number 1. We were thrilled and a little out of practice with the faster flow of the day but we figured it out. Gwen as always was there to save the day. Gwen is truly an angel and we are so grateful for all she does. I am so glad she was there today. She was missing for cast 5.

So we headed to x-ray with our favorite x-ray tech. Tom is a shining star. He is so great with the kids and the kids all know that once they are done with the x-ray the get a stuffed toy and stickers. We then went to pre-op with Ruby. Ruby is one of a kind and really sweet. She helped finally get Kiya to take her versed and was so patient while Kiya screamed.

5 minutes to 8am Kiya went back to surgery to get her new purple cast on. And then we waited. We ate some breakfast, had some coffee and waited for the lights to flash on our pager. It seemed like it took awhile but the lights finally went off.

I went to the door and waited for it to open. I was met by our amazing advocate Linda. She is just awesome. We chatted about Kiya, her heart murmur, her casting, it was nice. We were both just waiting for Dr. H. She finally went back to get him.

Dr. H came out and in true stoic form, started with the "well we are about where we have been, she is about 46 now. We would really like to see her straighter out of cast." Hold the phone....did he say 46? She was around 60 degrees, 12 weeks ago. This was seriously the best news we have ever heard on cast day. I then asked if she was basically straight in cast to which he replied yes. He seemed shocked by reaction. I was over the moon to finally have hope again. To know that the decision to cast in order to try and correct her curve was starting to finally work. It may not next time and it may take a few more before we get good news again but it doesn't matter. We finally know that good news is possible.

For perspective at 1st cast Kiya was 52 degrees. Then we had to take a long break due to the nasty sore. At 2nd cast she was 64. 3rd cast she went down to 62 so basically the same. 4th cast she went up to 66 and at 5th cast she was 60 ish. So our path has been filled with not so great numbers. Today restored my hope. Hope that we may see straight.

I was glad my friends were there to share in our joy today. Casting is not easy. It just plain stinks really and we have all had good cast days, okay cast days and really horrible cast days. Together we stand strong and hug and get each other through. I know that we are never alone. These cast moms have picked me up on our horrible days and celebrated with us on our good day today. I can only hope to do the same for them. I will shout from the mountains when there is good news and be there with a hug, support and anything else I can offer when not so good news comes.

With hope and hugs, friendship and love.

3 years ago....

January 6, 2009 will always be a day I remember. I saw this sweet face for the very first time. I can hardly believe it has been three years. She was so tiny, so scared and yet so tough. You can see the fight in her eyes. She still makes this exact grumpy face. I love it. She never hesitates to let you know what is on her mind.

I pause today to also think about Mama Zinash. She is the reason I saw this face and I will never forget that. As Miss Kiya gets older she is looking more and more like her mom. Her eye brows, her eyes, her nose look just like her mom.

She was 5 1/2 weeks old in the above picture and weighed a mere 6lbs and was just so little. She is still tiny but very tall. We will find out soon just how much she weighs again but likely about 31 lbs and probably close to 40 inches tall.

That concerned little girl pictured above is now my feisty, sassy, smart, compassionate big girl. She has come so far. Her journey hasn't been easy but it definitely could be worse and while scoliosis still sucks, I am grateful that is all we are dealing with.

I am thankful for this little girl. She is my shining star and I am so very blessed to be her mom.

Wordless Wednesday-Christmas addition

Pictures!

Sweet Katie is 9 months old and just so completely adorable. We got 3 new pictures today. I am only posting 2 since the third is with her foster mom and out of respect to her I am not going to post it.

Seriously so in love. She looks happy which makes me happy. Well and a little sad. My heart is so ready to have her home and yet we wait. I am not good at waiting. I am trying to be but it is so hard. I just want to wrap my arms around her and give her a big kiss. Kiya wants to take her to her to the pond.  We will wait. We don't really have a choice. We love her so much and we pray for her everyday. Next year at this time she will be here. I hold on to that. I am so excited for that time. My family will no longer be missing someone special.

3 year check up

I took Kiya in for her 3 year check up. It has been one year since we have seen her pediatrician. Kiya (knock on wood) doesn't need to see her regular doctor often. She gets the sniffles or a slight fever but nothing we haven't been able to manage. That said she does see a few doctors every 12 weeks so I think we are good on the doctor visit quota.

So here is what we learned while at Kiya's yearly check up.

1) She is VERY tall. Everyone couldn't believe just how tall she was. She wasn't being super cooperative so at a minimum she measured in at 39.5 inches tall but is likely closer to 40 inches maybe more. On record she is 39.5. That puts her well into the 90th percentile for height.

2) She is super skinny. She weighed in at 33 3/4lb in cast so we have to subtract about 3lbs. She is in the 25th percentile for weight once you adjust it down to factor out the extra weight the cast adds.

3) She has super dry skin in the winter. The doctor wants us to really work on it and keep in touch if our ideas don't work. We are using the Aveeno baby lotion twice daily with a layer of aquaphor on top and that seems to be working.

4) She is a trooper when it comes to getting shots. She just got the flu shot this year but was so great. One scream and done. Of course the princess sticker helped :)

5) Scoliosis and her treatment were definitely on the agenda. We got caught up on the casting and the progress or should I say lack of progress. We discussed long term what could happen and at what point we are willing to stop casting and go to bracing and or surgery. She and I both agree that as long as Dr. H agrees to keep casting her that we will cast as long as we can. Then if feasible we will brace to allow her time to grow and get older before pursing rod surgery. Our ultimate hope is to not have to have surgery at all but if we do then we would hope to be able to delay it so we could do permanent rods and not growth rods. We are so far from this point in Kiya's treatment but it was nice to lay it all out there too.

6) Ok I saved the big issue for last. The heart murmur. We discussed it at length and she listened a few times and heard nothing. She is of the opinion that it is possible that Kiya has a benign flow murmur which can't present in children when sick, stressed or dehydrated. It is harmless and something she will outgrow. She does not feel that an EKG or an echo cardiogram are necessary at this point but will support us if we decide differently. She also said that if she did have an actual heart murmur it wouldn't be heard sometimes and not others. At this point we can't do tests in cast so come cast off week in January, we will go back and see her doctor again and see if she hears the murmur when Kiya is out of cast. We will decide at that time if we need to pursue further testing.

Kiya turns 3!

It finally happened. My sweet baby girl is officially 3 years old. Her birthday was just a few days after Thanksgiving. We celebrated with the family on Thanksgiving day. She even got all dressed up in her party dress and sparkly shoes which she LOVES. The dress lasted about an hour but the shoes lasted all day. Seriously have a girlie girl.

Great shot of her blowing out her candle. She wanted pink cupcakes so on top of a turkey, this momma made cupcakes for her little princess. The dress was gone by this point and back to cheering on the Packers. You can't see it but she still has her sparkly shoes on.

The first time in 3 birthdays with little miss that she actually dug right into the frosting and managed to eat almost 2 cupcakes. Well I should say, one whole cupcake and all of the pink frosting and a few small bites of the second cupcake.

Me with my little girl. Man I love this kid and while she can be a handful some days, she is truly the best. I am a lucky momma indeed.

Catching up

So I know it has been awhile. I have been a tad busy with work, life, etc. So this is catch up post number 1.

I was honored to go on my very first Mom's weekend. It was seriously one of the best weekends of my life. I went with Catie, Chrissy, Sarah and Kelli my fellow cast moms from Chicago Shriners. It was our first get together outside of the hospital.

We went to some remote really dark state park in Indiana. So glad I wasn't driving alone it was really dark.

That aside the weekend was full of laughs, tears and some serious bonding. There was that initial fear would things be awkward since we usually only see each other in the confines of the hospital on cast day. Within 5 minutes that fear was gone. We all just clicked. We got it. We got each other. Our bond may have started with the plaster cast that our kids share but it goes so much deeper than that.

We shared. We confided. We supported. It was awesome. Oh and we had more fun that I had had in awhile. It was amazing and silly. We saw the new Twilight movie. We ate junk food. We drank wine. We had a blast.

This time it was 5 of us and hopefully next time there will be more. It was a much needed time away with some really great women that are like sisters to me. I cannot wait until we can do this again. I still hate scoliosis but I am glad I get to walk this path with such amazing people. People who are a phone call or text message away on the good days and the bad.

I left the weekend feeling connected and really blessed.