Success

Kelli's surgery was a success.  It started around 9:30 in the morning and ended about two hours later.  The plate was pretty embedded in the bone, so the doctor had to dig it out.  It took her awhile to wake up from the anesthesia and she was a bit grouchy at first.  After taking some more pain medication, she went back to sleep for awhile.  This time she woke up in a much more pleasant mood.  Overall she has been doing well.  Our only concern is getting her to use the potty.  Hoping we don't have a repeat of the problems we had last summer!  Thank you to everyone who has been praying for her!

Daddy held the posicle for me.

making silly faces

Finally relaxing at home

Surgery Details

On Friday, June 20, Kelli will have the plate and four screws removed from her femur.  These were put into place during her superhip surgery last summer.

After the surgery, she will have to wear this brace for a little over 2 weeks.   While I don't know all of her restrictions yet, I know she's not allowed to stand on her left leg.

Upcoming Surgery

Five years ago when I first met my little peanut, I had no clue how much this amazing child would be able to accomplish.  However, she was blessed with a strong dose of determination that helps her overcome the obstacles that she faces.

Since she ended physical therapy in November, she has been running, dancing, and climbing.  Her new-found thrill is climbing up the slide part of the slide (the steeper the better!) and learning how to swing by herself on the swings.  She has mastered riding her tricycle and loves to dance during worship.

Today was her last day of pre-kindergarten, and because she has done so well, she is going to be starting first grade in the fall.   She has already learned to read, loves to make up math problems and solve them, and has somehow taught herself how to tie her shoes!

Medically, she has had much to deal with so far this year.  Because she has frequent bouts of bronchitis/respiratory infections, her pulmonologist recommended that she have her tonsils and adenoids removed.  However, in order to do this, ear/nose/throat doctors and the insurance need confirmation of sleep apnea before performing the surgery.  As you can well imagine, being hooked to all kinds of monitors during the sleep study to test for sleep apnea did not make her a happy camper.  However, she managed to get through the test, which turned out to be negative.  We will be going back for a follow up in August to talk about what to do next.  Until then, she is on a medication that is supposed to reduce the size of her tonsils and adenoids.

Sometime in March, Kelli started to have urinary issues as well.  Her pediatrician needed to take a urine culture to check for an infection; the catheterization really scared and upset her.  Luckily, this test also turned out to be negative.  When the symptoms continued, her doctor sent her for an ultrasound of her kidneys and bladder.  Because medical procedures cause a great deal of anxiety in her, the technician was only able to get pictures of her kidneys and not her bladder.  Fortunately, her kidneys appeared to be fine.  At this point, I was starting to believe that her symptoms had more of an emotional basis and not a physical one.  I mentioned it to her counselor, and she has been working with Kelli on her anxiety issues.  Because her symptoms persisted, Kelli was sent to a urologist.  When a urine culture was taken this time, it showed a trace amount of blood and an elevated protein level.  However, further testing was within the normal range.  She will have a follow up appointment in August, and until then we are to increase the dosage of her laxative a bit and help her find ways to lower her anxiety levels.

Kelli's next surgery will be on Friday, June 20.  This one will be to remove the plate and four screws that were placed on her femur last summer.   This procedure should only take about an hour and a half.  Afterward she will be in a hip abduction brace for two weeks.  During that time, she will not be allowed to do any weight bearing on her left leg.  Her doctor will see her again on July 7, and if all is well, Kelli will be able to start walking and enjoying the rest of her summer.

I appreciate all of you who are and have been praying for her!
James 5:16  The prayer of a righteous person is powerful and effective.

School Time

Some pictures of my little student

CLASSROOM ACTIVITIES

Kelli can read at a beginning first grade level.  (She comes from a long line of bookworms.)

painting the first letter of her name

journal writing

playing letter bingo

practicing handwriting

SPECIAL DAYS

picture day

dressed as an angel for the school play

school Christmas dinner

 SCIENCE PROJECT

creating an ocean diorama

the finished project

HER FIRST BOOK

(She was supposed to do a collage on one mammal.  However, she asked if she could do more than one.  Here's her finished work.)

  

Full Recovery

Life has been very busy since the new school year started.  Kelli attends pre-kindergarten full time and is doing very well this year.  (Fortunately I get to be her teacher for half of the school day!)  For the first three months, Kelli had appointments 3 days a week after school.  Once a week she met with a counselor to work on self-esteem and self-control issues.  Twice a week she worked with a physical therapist to regain muscle strength.

It was heartbreaking at times to watch her during physical therapy.  Four-year-olds should be out running and playing, not doing exercises in a PT office.  All the hard work has paid off, though. She "graduated" from physical therapy the week of Thanksgiving. Now she is back to walking, running, and dancing with no difficulty.

She does still meet with her counselor once a week to work on self-esteem issues though.  Both her counselor and I are trying to get her to identify things she does well.  When we ask her what she is good at or what she likes about herself, she usually changes the subject or refuses to answer.  She also has a very low tolerance for any discomfort (shirt tags against her skin, pants being too long and covering her foot, small scrapes) or for what she feels is less than a perfect accomplishment (letters not written to her own expectation, drawings not turning out the way she envisioned them, etc).  Despite our encouragement and assistance, she does not handle these events well - usually resulting in some sort of meltdown.

So, where are we going from here?  Kelli has seen other children wearing an external fixator and knows a bit about the leg-lengthening process.  At this moment in time, she does not want to go through it.  Knowing her personality, we also do not think she will handle the pain of a leg-lengthening procedure and the extensive physical therapy that would be involved.

Found this pic from an online search.
Kelli would have to have this on her femur if she chose to have the lengthening surgery.
 I can barely handle looking at that thing!   

Our choice right now is just to wait.  If she changes her mind later in life, we will support her as she undergoes the difficult lengthening procedure.  If not, she will either have to get higher shoe lifts as her discrepancy grows or start wearing some sort of prosthetic.

She does need to have a plate and screw this year.  In two months we have an appointment to see her surgeon in Baltimore to talk about this procedure.  However, we also have an appointment with a specialist in Hershey in a week and a half to see if she can do it and to find out her recommendations for further treatment.  If we are able to have this done in Hershey, we will not have the large expense that would come with having it done in Baltimore.  (In-state procedures are covered by her secondary insurance.   Out-of-state ones are not.)

Getting Stronger

It's be a very busy couple of weeks for Kelli.  During the month of August she had physical therapy three days a week and counseling one day a week.  Now that school has started, we can only fit in two days of physical therapy and counseling.

Kelli only takes naps in school on Mondays during gym class (since she can't really participate well.)  The other days she stays awake to participate in the classes.  Despite not having very many naps during the week, she has not had any temper tantrums at school.

first day of school

recess

She has been practicing walking off and on as well.  She does feel more comfortable using her walker or crawling, but she can walk across the room if she takes her time.

We had a follow-up visit with her surgeon on Monday.  Hoping that he says her bones are healing well.

Learning To Walk Again

Kelli has been working hard to get her muscles strong enough to be able to walk again.  She has physical therapy three days a week, and she practices some of her exercises at home too.  At the moment, she is confident enough to stand alone without holding on to anything and to walk with her walker.  Two days ago, she managed to lift her left leg into the air when she was lying down without using her hands to help it move.  It was quite the accomplishment for her.

Today we picked up her new shoes that have a 7.1 cm lift.  At first she pitched a fit about having to walk in them.  The way she was screaming you would have thought there were knives in her shoes.  It took her almost 20 minutes to walk with her walker the short distance from the door of the office to our car because of her temper tantrum.  At first she said it hurt - her right heel hurt, her left foot hurt (but couldn't identify where), her legs hurt.  By the time we made it to the car, she was screaming that she was scared.  That time I think she was being honest.  When she is afraid of trying something new she will say her legs or feet hurt in an effort to get out of it.

Once she calmed herself down in the car, I explained that we needed to stop at the library next.  I planned to use her wheelchair since she was having so much difficulty walking in her shoes.  Guess what?  She wanted to use her walker, and she didn't fuss at all as we walked through the library.












This has been a long, difficult journey, but it is teaching us a lot.  Kelli is learning to become more confident and to overcome her fears, and I am learning to be patient.

walking in the grass is difficult

at church