Saturday, February 25, 2012

New Horizons

Our first family trip to Baltimore started at 4am last Wednesday (February, 15 2012) morning.  We woke up to get on the road very early so that we wouldn't be arriving in Baltimore too late.  It's a 10 hour drive.  Also, we wanted to stay ahead of a snow storm that would be right behind us all the way.  When you drive from Michigan to Baltimore, MD you drive through Pennsylvania.  If you haven't driven through PA before, you really must.  It is such a gorgeous drive.  I was "privileged" to drive that 5 hour portion of our trip.  It was a little unnerving at times driving down mountains next to Semi-Trucks with signs telling you to take this curve at 50mph.  However, every mountain peak gave beautiful views of new horizons.  For a couple of these hours Brandon and Kilah slept peacefully while I gripped the wheel, shoulders tense, eyes squinted, focused on the road ahead.  How telling.  This tends to be the way I take on life.  Sometimes when I get to the top of one of my life mountains I take a breath, look at the gorgeous view and I realize I have very tired shoulders. :)

We arrived at Sinai Hospital shortly after 5pm.  We spent the evening becoming familiar with our surroundings.  We used an Applebees gift card that was one of our Christmas presents and had a nice dinner.  We stayed at The Hackerman-Patz House directly across from Sinai hospital.  Hackerman-Patz (HP) is a house for patients and their friends/family of Rubin Institute.

If you're interested, here is a video about HP:

Here is a virtual tour, if you would like to see more:

Virtual Tour

Kilah seemed right at home at HP.  Her two favorite things were the chair and ottoman in our room and the shopping cart in the playroom.

Introducing Oatmeal (the monkey).  He was with us for the whole trip.  He even had X-rays done at the same time as Kilah.  He's such a brave little monkey.

Oatmeal needed pigtail bows too.

Our appointment to meet Dr. Standard was at 1pm and check out from HP was Noon so we had a little time to kill...

As you can see; Oatmeal was learning to use a camera.

Our appointment with Dr. Standard went wonderfully. As all of his patients and their parents had told us when they recommended him, we LOVED him.  He took care to spend as much time as we needed and answered all of our questions.  He had a little different plan for Kilah's leg than the previous doctor. The best part of the visit was the way that Kilah enjoyed Dr. Standard.  She was very comfortable with him and was feeding him pretend food (her favorite thing to do) throughout our appointment.  He won her heart as he chomped at her fingers and said, "nom, nom, nom!"   We have decided that we will be using Dr. Standard and Rubin Institute for Advanced Orthopedics (RIAO).

After talking with Dr. Standard we now know that Kilah's Tibia is bowed slightly.  This is common with FH kids.  He explained that his normal procedure is to do bone straightening before attempting to lengthen bones. Also, she will gain a little length by straightening the bone.  Dr. Standard also recommended the "Super Ankle" procedure for Kilah.  This is basically correcting her ankle and putting it in the best position for limb lengthening.  He advised that Kilah undergoes as many surgeries as are deemed necessary and beneficial before the age of 4 to prevent any social and psychological damage.  He said long term memory isn't really developed until after 4.  Developmentally, this is the best choice for Kilah.  Surgery has been set for the first week in October.  We will be staying at HP (we already have it booked).  Kilah will have her tibia straightened and the "Super Ankle" procedure done.   Both of these procedures require fixators, so this will be our warm-up/practice round for limb lengthening.  If everything goes as planned, Kilah will have her first limb lengthening next fall.  

Tuesday, January 24, 2012

Heart Encouraged

This will be a brief post to answer a common question and share an amazing video with you.

First, if you've been looking at photos and videos on my Facebook page lately you may have noticed that Kilah often wears a shoe on her shorter leg while wearing a slipper on her other leg.  We have found that this gives her a little bit of a lift and helps stabilize her ankle.  Also, when she stands still (which isn't often these days) she is more likely to stand flat footed.  Most of the time she walks on her toes on her shorter leg so she is loosing flexibility quickly.  Any flat footed time is good.  Our trip to Baltimore is approaching quickly and we plan on talking to Dr. Standard about her shoe lift and AFO (brace).

Second, I'm so excited to share this video with you.  Last night, when I watched it for time, it was so encouraging for my heart.  Although I know that Kilah will be a stronger person because of the things she will experience in her life, it is so uplifting when you see a young person as a living example.  It was nice reminder. My favorite part of this video is when Miranda says thanks for all of the good memories.  I will make sure Kilah has good memories. :)  Here is it.  Watch and see for your self.

Tuesday, January 17, 2012

Road Trip!!

Last Thursday Brandon and I were a part of a live chat with Dr. Standard from Rubin Institute for Advanced Orthopedics, Sinai Hospital of Baltimore.  He was taking questions from people.  Most people in the chat were those with children that have FH.  It was very informative.  Dr. Standard offered to do a free consultation with us and spent a lot of time answering all of our questions during the chat.  During the chat there was plenty of friendly banter going on between Dr. Standard, his patients and his RN, Lee.  Lee has been very helpful and attentive.  She emails me back quickly and her responses are always lengthy and answer all of my questions.  I really appreciate the service I have received so far from Dr. Standard and his staff.  Today I called and scheduled an appointment for the middle of February.  This trip is basically to get a second opinion and to see what we think of Dr. Standard and the facility.  

On a side note, I was playing with my camera a couple days ago and snapped this picture:

It looks like Maggie is going to remove Kilah's arm from her body.  Hahaha!  They really do play so nicely together and Maggie was in mid play bite. 

Sunday, January 15, 2012

Twinkle Toes.

I really just wanted to show that even if you don't have a fibula in one of your legs, you can still dance like a pro. Here are more of those "sillies and giggles" that I have been talking about.  We love listening to Pandora. I think this day we were listening to the "Kim Walker" station.

And here is an example of my future ballerina

Kilah jamming with daddy. 

These videos make my heart smile.  The end.  

Thursday, January 12, 2012

Refreshing comes after the storm.

Well today was not without tears but today it wasn't me.  Poor little Kilah fell while drinking her sippy cup.  She has done it many times before but today was different.  It was a little delayed but soon after the tears came ALOT of blood.  It soon stopped along with the tears but here is the result...

Kilah's first fat lip.  Just in case you didn't feel bad enough, here are a few more pictures.  I couldn't choose just one.  :)

I had to give her some Advil so she could sleep.  She woke up and said, "oh, momma" and pointed at her lip. It was hard not to laugh at how pitiful she was but now she sleeps soundly (the advil must have helped).

I just left a live chat with a doctor in Baltimore at Sinai Hospital.  His name is Dr. Standard.  It was a chat designed to answer questions about Limb Length Discrepancies.  It was very beneficial and I feel very blessed to have met more people with this commonality.  I received lots of great information.  In short, I think we will be doing a "road trip to Baltimore" soon.  That's what I'm calling it.  It sounds more fun an adventurous that way.  heehee.  I will keep you posted on any decisions we make.  

I thought I would share a picture I snapped the other day.  It really shows Kilah's current LLD pretty well.


And in this photo she is standing flat footed:

Wednesday, January 11, 2012

Sometimes there are tears.

Well it's not all giggles all the time.  Sometimes there are tears.  Yesterday I called my husband (THE best husband anyone could ask for, might I add) in tears after hanging up the phone with the company making Kilah's first AFO and shoe lift.  I had no idea what to expect and was socked to hear that an AFO for my tiny little Kia's leg is nearly $1000!!  Apparently we will be paying for that out of pocket because we haven't yet met our deductable.  Money isn't something I usually let bother me but I about fell out of my chair when I heard that number. Once I had my bearings again I called back and told them I would not be purchasing the shoe lift from them.  I have opted to have a local small business start making all of Kilah's shoe lifts because the price is about 80% less.  I asked if my mom, who was already in the area could pick up her shoe.  Later my mom called to explain that when she picked up the shoe, that it already had the lift on it!  Strange.  They had constructed it without my go ahead or payment.  Anyway, after discussing it with the manager they decided to give it to me for free because it was their mistake.  This lifted my spirits a little because it was over $100 for the lift alone.  It was long day of phone calls and insurance issues.  I spent some time reflecting on scripture and praying and felt much better about things when I went to bed (minus a killer tension migraine).

Today was a new day!  I woke up refreshed, headache free and ready to attack the day.  After a "lovely" teeth cleaning at the dentist, and with dinosaur cupcakes in tote, Kilah and I went to celebrate my nephew, Tristan's, 5th birthday.

When we arrived at my mom's house for the little birthday lunch/party.  My mom gave me the "free" shoe lift.  Right now I'm very angry.  I'm very glad that I didn't pay anything for it and I'm pretty sure it's a good thing that my mom picked it up and not me.  I'll post a picture.  We are still waiting on AFO.  Kilah can't wear the shoe lift without it.  Her lift is too tall and if she looses her balance and falls she could break her ankle.  Anyway, here we are a month later and still... no where.  ugh.  I will post a picture or two so that those of you who have dealt with shoe lifts can tell me what you think.

Thanks for reading.  Sometime's you just need to vent.  :)  I know God's got this.  I'm not worried.  I just don't like to be taken advantage of.

Monday, January 2, 2012

The Projection

On April 15, 2011 (Kilah was 7 months old) we met Dr. Paley for the first time.  Paley Advanced Limb Lengthening Instiitute is at St. Mary's Medical Center in West Palm Beach, Florida.  After more x-rays, we met Dr. Paley.  They use special formulas to project what the Limb Length Discrepancy (LLD) will be when the person is fully grown. Kilah's projected LLD is 5.5 inches.  Her Femur (the bone above the knee) makes up about 2/3s of her total LLD and her Tibia and Fibula (the bones below her knee) make up the rest of her LLD.  Dr. Paley explained that Kilah would "only" need 2 surgeries.  Her projected LLD is actually on the smaller side.  So we use the word "only" because many other people undergo several surgeries to Lengthen their limbs.  Also, many people with Fibular Hemimelia have hip or foot deformities that come along with the LLD.  Kilah is very fortunate that she will only need Limb Lengthening and a minor procedure done on her ankle.

Recently we visited Dr. Paley for a second time on December 5, 2011.  At this appointment he laid out a plan for Kilah's surgeries.  She will have her first LL surgery at age 3 along with a procedure on her ankle to help the bone grow correctly.  She will have her second LL surgery around age 8.  At both of these surgeries they will be lengthening each part of her leg the full amount of the projected discrepancy.  The first surgery her Tibia will be lengthened and with the second the Femur.  Dr. Paley also wrote her a script for her first shoe lift (4cm) and an Articulated AFO.  We just went last week to fill the prescriptions.  We should be hearing back from them soon.  I will update and post pictures once we get them and start using them.  It should be interesting.  :)

The latest prayer need we have is that Dr. Paley's office doesn't take our insurance.  Brandon's company changed insurance providers between our 2 visits.  When we went for our second visit we were told they don't take our insurance.  Now we have some decisions to make.  We are considering changing doctors, and we are working on a new budget that includes putting the maximum amount into Brandon's HSA each year.  This condition is so rare (1 in 40,000) that there are very few doctors that do Limb Lengthening.  We will have many expenses along the way because no matter what doctor we choose we will be doing a lot traveling.  She will need to visit and get measured for a new shoe lift every 6 months, so we will have ongoing traveling expenses.  Three months of daily Physical Therapy goes along side the Limb Lengthening process. This is an added expense as most insurance providers don't cover that much PT.  Also, we will need long term lodging during this time.  In short, there are many expenses involved but we trust and know that God will provide.  We would like prayer for wisdom to make good decisions as we journey through this adventure.

Here is a short video for a little more info: