She Did It!

I was pleasantly surprised to find Kelli trying to stand by herself.  She also tried taking a few steps.  This girl never ceases to amaze me!

Taking more steps!

A Relaxing Sunday

My day started with movies and puzzles.

I'm really scared, but if I want to walk soon I have to start by practicing standing up.

Since I was willing to practice standing, mommy painted my toenails!

Surgery Description

Many have asked what was involved in Kelli's surgery.  It was a five hour long, multi-step procedure.  Her doctor wrote a description of it for our local physical therapist, and I copied down what was written.  Then I had to look up the definitions of all the medical terms!  The words in parentheses came from my online research.

The hip incisions are several inches down along the outside of the hip.  There is also a smaller incision higher up. The groin muscle incisions are small (one to two inches) in the groin crease.

1. arthrogram of left hip   (imaging based test that is conducted on joints. An imaging device, usually an x-ray machine is used to take pictures of the joint after a dye or contrast has been injected into it.)

2. valgus derotation shortening osteotomy left proximal femur (super-hip type)
(cutting and removing a portion of the femur and re-positioning the ball of the femur in the hip socket. Sometimes the socket itself must also be worked on in order to have it contain the ball better.)

3. implantation of bone morphogenic protein-II to repair nonunion femoral neck
(to stimulate the production of bone so the portion of her femur that is still cartilage will harden into bone)

4. degas pelvic osteotomy   (A surgical cut is made in the pelvis, above the socket; part of the pelvis is bent down to form more of a cup. The space created in the pelvis is filled with a piece of bone graft and eventually fuses with the child’s bone.  The bone used for this graft was taken from her femur.)

5. release of rectus femoris   (cutting of the tendon to increase flexion of the knee)

6. transfer tensor fascia lata to greater trochanter   (To minimize the symptoms of limp and instability, the anterior ½ of the gluteus maximus was transferred to the part of the femur connecting to the hip bone and sutured under the largest part of the quadriceps femoris muscle. A separate posterior flap was transferred under the primary flap to substitute for the gluteus minimus and capsule. To ensure tight repair, the flaps were attached and tensioned in abduction.)

7. decompression of lateral femoral cutaneous nerve   (to relieve pressure caused by a neuroma, a pinched, or entrapped, nerve)

8. partial osteotomy of iliac wing   (realign/remove a segment of the hip bone. Most often, an osteotmy is performed to realign a deformed bone. The bone is cut with surgical instruments, realigned, and allowed to heal in its new position.)

She also had a plate and screw inserted along her femur to help in grow in the correct position.

Medical Diagnosis

When we left Baltimore, we were given a letter to take to our local physical therapist that detailed Kelli's condition and the surgery that was performed on her leg. I copied down what was written so I could do a little research.

This is her official diagnosis along with descriptions of each that I found through an online search. In the next day or two I hope to be able to post a more detailed description of the surgical procedure because I know many people have asked about it.

1. left coxa vara   (decrease of the femoral neck shaft angle to less than 120-135)

2. left congential femoral deficiency   (shortened femur)

3. left hip abduction contracture   (Permanent fixation of the hip in primary positions - in Kelli's case the movement of a limb away from the midline of the body,- with limited passive or active motion at the hip joint. Locomotion is difficult and pain is sometimes present when the hip is in motion.)

4. left hip flexion contracture    (A person is said to have flexion contracture if he cannot bend his knee properly. It is a deformity when the patient cannot fully straighten their legs either actively or passively. A flexion contracture patient may walk with a limp and may find normal activities more demanding in terms of energy needed and utilized.)

5. entrapment of lateral femoral cutaneous nerve     (a nerve that supplies sensation to the surface of your outer thigh — becomes compressed, or "pinched." The lateral femoral cutaneous nerve is purely a sensory nerve and does not affect your ability to use your leg muscles.)

6. nonunion of left femoral neck   (a section of bone has not yet ossified, it is still cartilage)

7. acetabular dysplasia   (the femoral head is not completely covered by the acetabulum (socket), the hip is unstable, may become painful and eventually develop osteoarthritis)

All of that was a lot for me to digest. Why does my sweet little one have to deal with such a difficult condition? I know I may never receive an answer on this side of heaven. But right now my heart aches for her. I wish I could make all of this better for her, but I can't. All I can do is be there for her, encourage her, and support her through this journey.

Firsts

relaxing after her first bubble bath

The last 24 hours has seen a lot of firsts for Kelli.  Yesterday morning Kelli had her first visit to our local physical therapist.  Everyone there was very nice and did a great job with her.  However, Kelli had a different opinion. She screamed through most of the hour long session.  I think it was more out of fear than actual pain, though.  When it was time to leave, she did give the therapist a high-five and a smile.  Kelli will have therapy every Monday, Wednesday, and Friday for six weeks.

first high top shoes

Next we went to her orthodist to have a new shoe lift made.  While this wasn't a first for her, it will be the first time she will have high top shoes.  We're hoping this higher shoe will add some stability to her ankles.  When we picked out the shoes at the store on Tuesday, she pitched a fit and said she didn't like them.  Hopefully, her mood and opinion will change when the shoes are finished and she gets to wear them.  I'm also hoping they are a good fit because she was unable to stand and walk around in them.

Our next stop was at a medical supply company to get a walker for her.  In order to make sure it would be the proper size, Kelli had to stand up - a first since this cast was removed.  Again, she screamed through this process, but at least she now has a walker to use at home when she overcomes her fear of standing up.

Another first happened at dinner.  While she was in the cast, Kelli ate all of her meals propped up on the couch or toddler bed.  Last night, she sat in her booster seat at the dining room table.  Yes, this did cause some fussing as she was afraid it would hurt.  It must not have been too uncomfortable for her because she ate all of her dinner and dessert as well!

This morning she used the potty for the first time since her surgery.  It was not easy for her because she feared having to stand up to wipe.  As a reward for using the potty, I made cinnamon rolls for breakfast (her favorite!).  She's now back to using "big girl panties" instead of diapers, and I'm hoping that potty times will become easier and less traumatic for her.

Look At Me...I'm Cast Free!

Hey look!  I now have an extra leg!

The cast removal was very traumatic for Kelli.  The saw used to cut the cast was very loud, but I think it was the fear of pain that really scared her.  While she felt confident to roll, crawl, and walk in the cast, she is now terrified to do any of those things.  Even picking her up causes panic because she is afraid it will hurt.

The good news is that the doctor said her bones have healed nicely.  There is still a section of the femur that needs to ossify though.  Once that happens, we can make plans for leg lengthenings.  Her doctor said it will take at least a year or more.  I guess in Kelli's case, the longer it takes the better.  I don't think she'll be emotionally ready for another surgery anytime soon.

Physical therapy starts tomorrow, and she will have another appointment on Wednesday and Friday.  For the next six weeks, she will have to go three days a week.  Please pray that she overcomes her anxiety and is willing to cooperate with the therapist.

So glad to have my cast off!

Cast Removal

After being away for three weeks, Kelli and I returned home on Thursday.  She was thrilled to be reunited with all of her toys and stuffed animals.  In fact, she's been in such a good mood that she has not had one temper tantrum since we've returned!  I'm so proud of her for making good choices and for being cooperative the last few days.

Her cast will be removed tomorrow at 2:30.  She is so excited to finally have it taken off.  She is looking forward to being able to play at the park and to dance again.

Nothing's Going To Stop Me

Climbing

Once she starts, she doesn't stop.  Standing and walking yesterday, climbing today.

Walking

Tonight Kelli decided she wanted to try standing up by herself...

It ended with her wanting to try walking...

 

 



So proud of my little one for overcoming her fears!

Incentives

Kelli has has three - almost four - very good days in a row.  We're working really hard with her on using words to express her feelings instead of screaming, hitting, and being uncooperative.  While we have tried incentive charts and rewards before, this time it is working better.  I think part of it has to do with the fact that she can earn rewards faster than in the past.  I'm planning to increase the time it takes to earn rewards each week.  Hopefully this will help Kelli learn how to deal with uncomfortable situations and frustrations.

writing in her journal

using mommy's laptop

finally sitting up

enjoying a cupcake

   

Grouch Bug

Yesterday was a rather difficult day for Kelli. She had not had a bowel movement in awhile, so I had to give her a suppository.  It was not a pleasant experience for her or for me.  She screamed and shook for quite awhile.  It terrified and hurt her.  As a parent, the last thing I want to do is hurt my child or see her in pain. However, I had to do something to help her have a bowel movement.  Unfortunately, when I changed her diaper, I realized that it had fallen out.  So, we tried again in the evening.  This time it was worse.  Screaming, shaking, and a look of sheer terror in her eyes lasted for a good half and hour afterwards. (Thankfully she did go about two hours later.) Not to mention all the other fits she threw throughout the day. I was exhausted. She seems to be doing better this morning.  While she is in a better mood, she is not moving around much today.  I guess yesterday wore her out too.

Trying New Things

I've figured out how to sit up.  It only lasts awhile because the cast squishes my belly.

I can do push-ups and lift my left leg.

I'm terrified to stand up, but I'll at least kneel!