3 days pre-surgery.

Been a while!

Fair statement. It's been a busy month since finding out Kielah is having surgery. Not a whole lot of specific updates, but there's a couple.

• The surgery is technically called a femoral osteotomy.  (femoral: femur; osteotomy: the surgical cutting of a bone or removal of a piece of bone. sounds fun, eh?)
• She'll be in the cast 4-6 weeks. We've got a room at home almost all set up for when she gets home. 

In the month of August, we took SIX trips to Dallas. 😱 I know. Trust me. I feel it, and my wallet feels it because I got to spend $300 on new tires after we got a flat in the middle of Dallas on our last trip. 💰 (PTL for my emergency fund money)

 

 Not all of these were for the surgery. Four were for getting fitted for a new prosthetic, and then getting the prosthetic fixed.

 

Yesterday, Friday, we went to TSRHC to get Kielah's blood drawn. They do this because apparently the femur bleeds a lot and, as stated above, they'll be cutting through her femur. (To be fair, sounds awful. Not saying it won't be as tough as it sounds, but her femur is not as thick as the femurs that come to mind for people without this condition.) 

 

Her dad decided we shouldn't tell her until we got there, and I agreed because our little girl's imagination runs wild, and we didn't want her freaking out the entire time. Once we got there, she needed to go potty, so I took her while her dad checked her into labs. We figured we'd have a wait because we always have a wait. But low and behold, the one time we needed that wait to tell her, there was NO wait. (Of course. Am I right? 😑 ) Walked out, and I could tell by the face that her dad gave me that we were already up. He proceeded to tell her, and immediately you could see the fear take over her face. This child does NOT like needles.

 

Baby girl clinging onto daddy while waiting to get blood drawn.

 

I just want to say, daddy was a CHAMP with this situation. He got out his phone for her to watch YouTube, made sure she didn't look when he poked her (because she kept trying to), and held her LITERALLY the rest of the trip unless she was in her car seat or stroller. (Yes, she's four and rides in a stroller sometimes. Her hip and knee hurts when she walks for a while. Hence the surgery. It's easier for everyone for her to be in that when we know we'll be somewhere like a mall or zoo.)

 

 She got a fancy Wonder Woman bandaid, and a new stuffed animal, or "stuffy", for being so brave!

However, this is still Kielah we're talking about. When we got in the car, I asked her what she was going to choose to get, and she looked at me all feisty with her hand on her hip and said,  

"EVERYTHING. I. Deserve. Everything."

 We're only THREE days out from surgery. Starting tomorrow night, we'll have to start cleaning her with some special antibacterial towelettes TSRHC sent us. These limit the chances of infection during and after surgery. Monday morning-ish we'll be heading to Dallas to have a fun day with her before being at the hospital at 5am for surgery on Tuesday morning. 

 

I'll try to keep updates on here, but we all know how good I am with that. I can't make any promises that I'll be able to post very often, but I'll do my best! Thank you all so much for the prayers and donations to Kielah's GoFundMe. 💜

 

 GoFundMe

What you can pray for.

FEAR.

A lot of people are asking what they can do or how they can pray. Right now, fear is the main thing.

Kielah is a smart little girl. Way too smart for her own good. She asks questions even adults wouldn’t think to ask. She says things even adults wouldn’t think to say.

Some things I’ve been told/asked in the last four days:

·        I don’t want to be in a wheelchair.

·        Am I ever going to be able to go to daddy’s house?

·        Is it going to hurt?

·        Are they cutting my foot off? (Side note to say this question is because she knows the doctor has mentioned this before, and while it was mentioned Friday, it was in a “that’s an option but not recommended” type of way).

·        Am I going to get a shot?

·        Why can’t Bubba be in the surgery room with me?

·        Is it going to hurt?

·        What are they going to do?

·        Will I be able to snuggle with you before bed with my cast?

·        Will I be able to ride in a car?

·        Will I ever be able to go to gymnastics again?

·        Will I ever be able to go to school again?

·       Will I ever walk again?

We went to lunch after her appointment, and while me and her dad were sitting there, out of nowhere she said, “I’m really scared.”

This doesn’t mean she’s nonstop all day asking questions or voicing her fears. If she’s preoccupied, she’s fine.

If you know of any songs about fear (preferably that are new and catchy that she’ll like) please let me know! I want to make a playlist that I can play once we lay in bed to keep her mind from going there. 

*We have a GoFundMe account set up for the costs we will incur throughout this time. Kielah's Surgery

Surgery scheduled!

It’s been a while.

Hey guys, just an update after a long time without one! (Oops.)

We found out in February that Kielah would be having a SUPERhip surgery sometime soon, but her bone development wasn’t quite ready yet. It was determined by Dr. Herring (her surgeon) that it would be checked again in November.

Lately, Kielah has been having a lot of pain lately when she walks around for a little while. We determined this was because her prosthetic leg doesn’t fit correctly. We called last month to get an appointment to get it looked at, and, long story short, it was determined that we needed to have an appointment with her surgeon.

Fast forward to today…

Found out a couple of days ago that they were going to send us to get images done before we saw the surgeon. (Insert dramatic DUN DUN DUN here)

Kielah gets x-rays all the time. First one was when she was a few hours old. She’s a champ at them. However, x-rays mean he’s looking again to see if her bones are ready for surgery.

Once we got done with that, we went to see the surgeon.

Dr. Herring checked her how he usually does (range of motion, gets her to walk, basic stuff), and then says,

“Well the bone looks like our next step will be surgery.”

(According to the man who has made Kielah’s prosthetics since her first one, this is pretty much how I looked at her dad when he said it.)

I was nervous, but I’m still much more peaceful than before because I had prepared myself for an all-day surgery.

(Side note to say that I am forever grateful for Kielah’s dad. He’s really the best dad she could ever have, especially in this situation, and he’s really the best co-parent I could ask for in it.)

The surgery will essentially rebuild her femur head and hip socket. It’ll take 2.5 hours. We’ll be at Scottish Rite for two to three days, and after surgery she’ll be in a Spica cast for about six weeks and be in a wheelchair in this time. After the cast comes off, she’ll do physical therapy and have to relearn how to walk. Dr. Herring said she’ll be walking again by her birthday. (GOALS)

Specific prayers:

-       Peace for Kielah. She was in there when the surgeon was talking, and we would never hide it from her and blindside her on it. She’s understandably nervous.

-       That people don’t constantly bring up the surgery to or around her.

-       Finances for the trips necessary during this. Just through September 6^th, we will be staying in Dallas a total of five nights over at least two trips. That doesn’t include going back for checkups, cast removal, or physical therapy.

We are so thankful that y’all care about our baby girl so much.

The "S" word is better than the "A" word.

Kielah had an appointment this morning in Dallas at TSRHC.

As previously mentioned, the word amputate instantly makes me want to cry and/or vomit. So clearly, last night I couldn't fall asleep until about 2am and still managed to wake up every single hour. 

This morning, Kielah woke up happy about life, but when she remembered she was going to the doctor, she automatically started crying about not wanting to get a shot. (Thanks, IV😂) After she realized her prosthetic doctor doesn't give shots, we were ready to go.

Fast forward to the appointment.

The doctor came in and asked all the things he always asks (pain, range of motion, can she walk on her foot without the prosthesis on, etc). The only difference this time is that Kielah has in fact been having pain, and has been telling me and her dad that her knee is hurting on a regular basis for no apparent reasons. Her doctor pulled up Kielah's previous X-rays, and informed us that she will need to have a SUPERhip surgery in early 2018. (Cue the tears😭)

(Surgery is better than amputation though...Priorities with a child that has PFFD)

Here's her X-rays from right before she turned one in 2014 compared to her X-rays taken right before she turned three in 2016.

2014                                 2016

Good News!

As you can tell, her femur has grown, and the bottom ACTUALLY looks like a real bone now! The bone has straightened out, and it is trying SO hard to be where it's supposed to be!

Not So Great News.

Her hip looks pretty much the same. The anatomy hasn't changed. However, the position is VERY obviously lower. You can tell by the pelvic region that her left hip if significantly lower than the right. The socket isn't formed correctly, and the tendons and ligaments are pulling her hip down because the bone isn't very strong. She'll have to have surgery to help strengthen it. This surgeon described this surgery as "not major, but not minor. Kind of in between." She'll be in the hospital for a couple of days in Dallas. People might wonder if I would rather her have this surgery in Abilene, and the answer is a definite NO.

Her surgeon is literally world renowned for what he does. He speaks in multiple countries every month out of the year over these types of procedures. If my child has to have a surgery, I definitely want someone who is known around the world for performing this exact surgery.

If you're curious about what this surgery involves, check out this link.

Kielah won't be having limb lengthening, so that part of the article won't be for Kielah. She's having it to just strengthen the hip so she can play sports or do anything else without pain.

Ask me any questions if you're interested!! 

Hi, my name is Katie, and my child has a prosthetic.

OH. MY. GOODNESS. 😑

When you think of people who need prosthetics, you probably think of veterans, not a three year old. I completely understand that. I have no problem with that. That's EXACTLY what my first thought was when the doctors told us Kielah would eventually need one.

BUT HERE'S THE ISSUE.

If you see my child somewhere, and you are curious what is on her leg:

ASK ME.

• Do not stare. 
• Do not give her weird looks. 
• Do not poke your friend and point to my child and speak. 
• Do not keep looking into space then looking back at her because I CAN TELL.

It's not a normal everyday thing to see a toddler with an apparatus on her leg. I GET IT! However, if your child had something special about her, and someone was staring at him or her, would you be upset? Yes. 

I don't mind questions, and most parents in my situation don't. 

In fact, I am happy to answer any questions you may have. 

If you are staring at my child, it should be because she is CUTE. AS. HECK. Not because she has "something on her leg."

-Rant over-

Well, here we go!

Well hello there! :)

This is my first blog post so I still have to get the hang of it.

Let's start off with a little background:

Kielah at 1 day old!

Kielah was born in 2013. I was 20 years old when she was born. I had a c-section, so I didn't get to see as soon as I had her. When her dad and the nurse came into the recovery room, they told me that for some reason Kielah's left leg was shorter than her right. 

Kie right after birth. *Check out that hair!*

Thankfully, we have an amazing pediatrician who got us in with doctors at Texas Scottish Rite Hospital for Children when she was only a week old. 

Fast forward three years, three prosthetics, and a few terrifying moments (which will be elaborated on at a later time) later, and now we have this sassy little girl!

Kielah on picture day - 2017.