THANK YOU!!!

  Sitting in bed all day can get quite boring.  However, thanks to friends and family, Kelli has been receiving wonderful care packages filled with things to keep her occupied while she heals.

Life is Just Better With A Dog

Daisy has been helping Kelli with her recovery.  

Mobility

   It's not easy to get around when you have had surgery on both legs.  There were two incisions on Kelli's right leg where they stopped the growth of the femur.  She has to wear a brace on this leg for at least two weeks.  When we have our follow up appointment, we will find out if she has to wear it longer.

  She has one incision on her left leg from the guided growth plate, and we keep an ace bandage wrapped around it to protect it.

  Her doctor had told us that she can weight bear and walk as soon as she feels comfortable provided that she wear the brace.  For the first few days, it was too painful for her to put pressure on her legs, so her dad and I would carry her to and from the bathroom.  This was so much easier when she had her first two surgeries at at ages four and five!  Back then, I could carry her by myself.  Now, her dad picks her up under her arm and I support her legs. 

   We decided to invest in a portable beside toilet so she wouldn't need to be carried as far and she wouldn't need to walk as far when she felt comfortable standing.  The beside toilet arrived on Friday afternoon, and I set it up for her.  After using it twice that day, she decided she wanted nothing to do with it and was determined to get to the bathroom on her own.  At 11:50 pm, she grabbed her walker and walked down the hall to the bathroom on her own.  By Saturday afternoon, she was walking to and from the bathroom without her walker. 

   We knew she would be allowed to shower starting on Friday, so we also purchased a shower chair for her so she wouldn't have to stand if it was too painful.  Our shower already had a handheld sprayer so she was able to safely enjoy a nice, warm shower.

   Each day her pain level decreases and she requires less pain medication.  Through it all, she has maintained a positive attitude and hasn't lost her sense of humor.  She is one amazing young lady!

First Day at Home

   While surgeries do come with their fair share of worry and anxiety, it is the post surgery time that always worries me the most.  In the past, the days following Kelli's surgeries have been really hard.  She has a really low pain tolerance which leads to refusal to eat and drink and emotional meltdowns. 

    We've been home for a little over 24 hours now.  Kelli has been in pain but seems to be in pretty good spirits.  As long as she remains somewhat still in bed, her pain level is relatively low.  Moving (especially when getting up to go to the bathroom) causes an increase in pain.  While she is allowed to stand and walk as tolerated, it is too painful for her at the moment.  We tried wheeling her back and forth from the bathroom on an office chair, but that didn't work as well as we wanted.  For now, her dad and I work together to carry her until she feels more comfortable with standing and walking.

   Thankfully, she has been eating and drinking well.  I have been trying to keep all of her favorite things in stock to encourage her to eat and stay hydrated. 

   Although there have been many unexpected changes with this surgery, I think it has been for the best.  Twice since we've been home Kelli has said that she's sort of glad that they were unable to do the lengthening because she would be in even more pain than she is currently.  I guess all things happen for a reason. 

A Change in Plans

   We left home bright and early this morning for our almost two hour trip to the hospital.  Everything was going well until we were about 8 miles away.  A multiple vehicle crash stopped traffic for about 45 minutes. 

   Fortunately, we were only 40 minutes late for our check in time.  Kelli had to go through the COVID testing again before they could proceed.  When the doctor came in to talk with us, he expressed his concern that the internal nail might be too big for Kelli's femur.  His plan was to place it on her thigh and take an xray to see if it would fit.  Unfortunately, it did not so she will be unable to start the lengthening process at this time.  

   Her doctor did do the epipysiodesis  (stopping the growth of the right leg) and hemiephysiodesis (adding a plate on the side of her left knee to straighten things out a bit).  During the surgery, he noticed that her left knee was more unstable than originally thought.  He thinks that she will need to have knee surgery before any future attempts at lengthening.  

   Her doctor plans to consult with a colleague and come up with a  new treatment plan for Kelli.  The inital thought is to reconstruct the knee while we wait for her femur to grow enough for a lengthening.  We meet with her doctor in two weeks to start formalizing a plan.  

   As I have learned throughout Kelli's journey, expect the unexpected.

Expect the Unexpected

   We opted to get a hotel closer to Philly because we had early appointments scheduled on Thursday and Friday.  On Thursday, Kelli had to have the COVID-19 test at 9:00.  Although it was a painful test, she did really well with it.  I was so impressed! Afterwards we hung out at the hotel and did a bit of hiking at Valley Forge National Park.

  

   We were to arrive at the hospital at 10:15 on Friday.  We got checked in and started the pre-surgery routine.  Around 12:15, they gave her some medicine to help her relax and she started to get a bit drowsy.

   Around 12:45 they took her back to the operating room.  Since it was lunchtime, Greg and I decided to go to the cafeteria for a bite to eat.  Shortly after we started eating, I got a phone call requesting that we come back upstairs because the doctor needed to talk to us.  There was a change in plans.  The doctor explained to us that the internal nail part had not been delivered to the hospital. (Thankfully they discovered this before she was given any anesthesia!)  Our options were to see if a courier could bring it that day, do part of the surgery (stopping the growth of the right leg) and save the lengthening for another time, or rescheduling all of it.   Our first choice was to see if someone could bring the necessary part to the hospital, so the doctor started to make some phone calls.  Unfortunately, that didn't work out as we wanted.  Finally, we opted to reschedule the surgery for Tuesday. 

   Kelli was still napping from the medication during this time.  When she woke up, I had to break the news to her about what had happened.  She was really upset.  She was able to hold it in until we got to the car, and then the tears began.  It was absolutely heartbreaking.  I know she was looking forward to getting this process started. 

   We're now spending the weekend regrouping and prepping for the new surgery date.  Unfortunately, Kelli will have to redo the COVID test, but they will be able to do it the same day as the surgery.  Hopefully, things will be a bit smoother this time.

Our next surgical adventure

After her experience with hip surgeries in 2013 and 2014, Kelli did not want to procede with limb lengthening.  We respected her decision and chose to wait until she felt ready.  Last year she started to express some interest in beginning the process, so we began to do some research.  We found a doctor she felt comfortable with and learned about the internal nail procedure for limb lengthing. 

Orginally, we had planned to schedule a surgery for May because we knew this process would take several months, and we didn't want it to interfere too much with the start of a new school year.  However, when everything started to close because of COVID-19, we didn't think the surgery would happen this year.  This was devastaing news for Kelli because she was looking forward to starting this journey. 

Luckily, we got a call that surgery would be a possibility in June.  We met with the surgeon in May and started planning for a summer surgery.    Kelli is scheduled for her first limb lengthening surgery on June 19.  These videos explain the procedure.

https://www.youtube.com/watch?v=GukL80YEVjk

https://www.youtube.com/watch?v=RPKQ55qkFb0&t=31s

Kelli is both excited and nervious about this upcoming surgery, and to be honest, so am I.  However, I know that we have a wonderful support system and that we will get through any difficulties that come our way.

Hives :(

Just when we thought things were going well after this surgery...Kelli broke out in hives on Saturday.  Benadryl has helped take away some of the itchiness, but not the redness.  Today I took her to our pediatrician.  The recommendation is to give her benadryl every 4 hours during the day and another prescription medication at bedtime.  Doctor said this could last for several weeks.  :(

Being Silly

This lasted for at least five minutes.  You can tell she's feeling better when she's acting like this!  (Yes, she made up the song herself....and she gets her taste in music from her daddy.)

Recovering

lounging with her puppies

homeschooling

coloring

playing with her favorite toys

dinner time

Countdown

When we met with Kelli's doctor earlier this spring, she had said that after the surgery Kelli would either be in a custom made brace for two weeks or a pillow-type brace for six weeks.  The doctor chose the custom made brace, so we are all hoping that Kelli will only have to wear it for two weeks.  However, after the surgery, the nurse did say that the doctor will assess Kelli at her follow up appointment in two weeks and then decide what happens next.  Please join us in prayer that her doctor will decide on July 7 that Kelli no longer needs to wear the brace.

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.)