Exhausted Giggles and Sillies

One week ago we flew to Baltimore for Kilah’s check up with Dr. Standard.  Because we had a very early flight out of Flint Bishop, we set our alarm for 3am and woke Kilah up at 4am.  We were back in our beds by 11:30pm that same day (so much better than the 11 hour drive one way).  Southwest Airlines offers great deals from Flint to Baltimore and we are so blessed that all 3 of us were able to fly.  Thank you again to everyone that participated in our “Kilah Art Auction” to help fund our trip.  We raised over $600!  It was much more than we needed.  Any funds we didn’t use went into Kilah’s savings account for future medical costs.  We are so blessed by our amazing network of family and friends. ❤

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After picking up our rental car and heading into Baltimore we had, what some might call, a healthy appetite.  We went to “Our Favorite Place” to eat near the hospital, Pepe’s.  They DO have great food but mostly it’s one of the few places close to the hospital that we know how to get to and back without getting lost.  Once we were refueled, we made our way to the RIAO to visit with Dr. Standard.  As usual, we had a long wait to see our wonderful Doc.

X-Rays first :

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After her X-Rays were done we had a little time to kill…

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It’s best to utilize your exhaustion and turn it into “the sillies”.

Oh yeah… so the important stuff:

Dr. Standard said that Kilah’s Tibia and Ankle look wonderful.  The bones are completely healed now.  Kilah’s current discrepancy is 3.5 cm.  He calculated her future discrepancy and, at this time, he is recommending we wait until age 7 to do her first lengthening.  This was a major relief for me.  Most of you know, we are expecting a little girl in June.  I was also expecting surgery and a 3 month stay in Baltimore at the end of this year.  This combination had me a little concerned.  Taking care of a new baby while also taking care of a Fixator, Physical Therapy and administering meds to my 3 or 4 year old did not sound like a good time.  Brandon and I are both thankful for this blessing.  Doc also mentioned that Kilah has developed a slight Knock Knee.  This happens with FH cases and is easily corrected with an Out Patient procedure.  If it doesn’t get worse or become painful it may not ever need correction.  A second lengthening would also be needed when she reaches skeletal maturity.  Probably around age 13.

For now we will be taking her case a year at a time.  We have an appointment scheduled for next March to see if anything has changed.  Every Fibular Hemimelia case is different and there is no formula for treatment.  Dr. Standard said to feel free to email or text him if there are any issues between now and next March.  We are truly thankful for having met Dr. Standard.  We feel like we are in the best hands and it’s a wonderful bonus that he’s a great person (and fun to be around too)!

Our appointment was over around 1:30pm and our flight home wasn’t until 10pm. You could say we had a little time to kill so we decided to check out the zoo.  57 degrees and sunny felt great to us Michiganders.  My Brother’s family got us a Saginaw Zoo membership for Christmas and with it we could get into the Baltimore Zoo for 1/2 off.  What a blessing!  We had 2 hours until closing time and some how we managed to see most of the zoo before we left.  It took Kilah about 3 minutes to fall into deep car sleep when we left from the zoo and began our drive to the airport.

It was a long and tiring day.  We really made the best of it and had a fun family day.  Thank you again to everyone that helped make our trip financially stress free.  We love you all so much!

Thanks for reading.

 

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Jet Lag

The Sherman family is feeling some jet lag today.  We woke very early yesterday (3:30am) to make it to our 6:25am flight out of Flint to Baltimore.  It was a long and tiring day but there were blessings along the way.  Our first stop.  Breakfast.  After a very hearty breakfast at Pepe’s (one of my favorites near the hospital), we took a chance and tried a different route to a Barnes and Noble we had been to before.  We turned a corner and it was as if we were in the U.P. of Michigan.  It was a wonderful surprise.  It would have been easy to forget that we were in a major city as we drove through the beautifully wooded area.  For several miles there were trees, hiking trails, kids and youth camps, farms, and horse ranches.

Since it was around 95 degrees we opted for an air conditioned  book store with a train table for our thrifty entertainment.  We first thought we would check out the Baltimore Children’s Museum but a google search left us disappointed.  Closed Mondays.  Bummer.  Another time, I guess.  Instead we spent time playing with the train, reading, playing with puppets, and playing with blocks.

We spent much of our afternoon in the waiting room at RIAO making friends with other patients and/or parents.  Kilah had some X-rays taken.  She did her first standing X-rays.  When the girl asked if she could do standing X-rays it blew my mind.  Where has the time gone?!  We used to have to hold her down and hold her still on a table to get a good image.  Yesterday she stood perfectly still in the exact position she was told.  My almost 3 year old.  Wait. What?!

When our favorite PA, Allison (besides Darla Mays, of course), came in the room she expressed how pleased she is with the way that Kilah’s leg has healed.  She said that if the leg wasn’t shorter you wouldn’t even know she had Fibular Hemimelia.  Kilah’s current discrepancy is 3cm.  When Dr. Standard came in Allison mentioned how great the bone looked and he agreed that her bone has healed exceptionally well.  He asked Kilah several times what she was doing so that her bones healed so well.  We know why.  Prayer.  I told him it was because of all of the prayer.   As we finished talking with Dr. Standard the long day caught up with Kilah and she fell asleep in my lap.  Ok, now she didn’t seem so grown up and my heart melts.

We made our next appointment for March of 2014.  That appointment will be more lengthy and we will be making a plan for Kilah’s first lengthening at that time.  So for right now, we have 9 months to enjoy life with our little girl (just as we have been).

Overall it was a tiring day but we had lots of blessings and giggles along the way.

Here are Kilah’s X-rays from yesterday:

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Here are a few pictures of Kilah from today that show her current discrepancy:

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She wanted the puppy in the pictures.  heehee.  It looks like the puppy is struggling to get away but I assure you she is not.  They are best friends.  It’s a love/hate relationship.

Thanks again for all of the Love and Prayers.

Thanks for reading

Is it June?

Half a year has gone by since my last post!  Can it be?  Things are going so well with Kilah that there hasn’t been any need for an update.  We are enjoying life.  Kilah has had no issues since her cast came off.  She does use a lift on her right shoe to help with her 2″ discrepancy.  For now she doesn’t have to use an AFO (ankle brace of sorts).  Her ankle is very strong because of the reconstruction that was done in October.  When her cast first came off she she had very little flexibility in her ankle but now, 6 months later, you would never know.  She is running, jumping, climbing, and, more recently, working on jumping on 1 foot.  Kilah has developed quite the sense of humor and keep us laughing.  We are still full of giggles here at the Sherman house.

We have a regular check up appointment in Baltimore on June 24th.  After doing some research we figured out that it was less expensive for 2 of us to fly to Balitmore than for the 3 of us to drive there and stay 1 night.  It just didn’t make any sense for us to drive the 12 hours there and 12 hours back when we could get on a plane and sleep in our own bed the very same night.  I was a little nervous about flying with my 2 (almost 3 year old) by myself.  Kilah is still a little hit or miss on potty training… and hauling a bag or 2… going through TSA… the possibility of a tired 2 year old (from no nap)… I could feel my back tightening from frustration just considering the possibilities.  I decided to make a plee on FB to see if anyone had some miles or free flights they would be willing to donate so that the 3 of us to go together.  It wasn’t even 12 hours later and we were holding a check from an anonymous donor.  This person/persons had paid for all three of us to fly to Baltimore and back.  I’m so thankful for them, whoever they are.  ❤  Thank you.  Thank you.

At this appointment they will do some x-rays and we will see Dr. Standard.  I’m sure we will be discussing when we will schedule the lengthening surgery.  I will make sure to keep you updated as we know more.

Finally, I have decided to do a little more work with my Darci’s Doodads.  When Kilah had her surgery in October we didn’t realize that her fixator removal would end up happening in January.  Due to the holidays we could not get in for removal before January 3rd.  With one surgery being in October and the second in January we ended up paying our full deductable ($3500) twice in a matter of 4 months.  Along with Christmas gifts, and some car issues ($400), we were hit pretty hard.  February and March we cleaned out our savings account.  Since then we have gotten ourselves on a budget and things are looking much better.  🙂   I’m saying all of this so that I can be completely transparent.  We have had a lot of people help us out financially and we appreciated every penny.  For those of you who have helped financially, Thank you!!!  We got through a very emotional time in life and didn’t need to worry at all about money.  🙂  All of this to say, I’m going to be doing a little more work with my Doodads so that I can help contribute an income to reestablish some savings for our family.

 

Just look at how this girl can move!  As you can hear in the video, I’m giggling.  Just try not to laugh when you watch it.

Thanks for reading.  Thanks for your prayers.

On The Road Again…

In a couple of days we will, once again, be driving to Baltimore.  I figured it’s about time that I fill everyone in on how things are going for our little Ball of Giggles.  Our previous trip to Baltimore was only a 2 night stay and we were quickly on our way to South Daytona, FL.   After 3 months of that metal contraption on Kilah’s leg we were very excited to have it removed.  This mom had a little anxiety, as would any mom, when leaving their child in an OR even if it was only an Outpatient Procedure.  However, Kilah was out of surgery, out of recovery, was released, snacks were in hand and was walking around in the Hospital Lobby just 45 minutes after leaving her in that same OR.  The fixator was removed on January 4th.  Per Kilah’s request a green cast was put in its place.  The cast covers her foot with just 4 of her toes peeking out and goes about 1/2 way up her thigh.  MiMi (my mom) was along for this trip.  She was able to see all of the wonderful facilities at “our” Sinai Hospital and meet some of the great staff that attend Kilah including Dr. Standard.  Prior to our trip we had decided that following the fixator removal was the perfect time for the 3 of us girls to head to FL.  My mom’s dad, Papa Warren, had had some health issues in December.  Although, he is completely healthy and has recovered wonderfully, we thought some family time should be in order.

In the couple of days following the removal, Kilah would ask, “Mom, put fixator back on?”  For her, the fixator had become a normal fixture and a normal part of life.  I would just smile, laugh and say, “no, remember Dr. Standard took it off and now you have this cool green cast?”  She would then ask, “where my fixator go?” Searching my head for an answer, I remembered at some point someone telling us at  that Dr. Standard spends time in the Dominican Republic every year doing Medical Mission Trips and that they reuse all of the parts from the fixators.  “Another little boy or girl who needs a fixator is going to use yours.  Isn’t that cool?”  is my response.  This seems to hold her… for now.

Our trip to Florida was full of wonderful times with family and friends.  My fondest memories are the little moments.  Kilah using coasters as pretend hamburgers and “mac’n’cheese sandwiches”.  Papa Warren on the floor playing whatever Kilah instructed him that they were playing. Many games of hide and seek with my not quite 77 year old Nanny (my mom’s mom).  4 generations of girls watching Family Feud every night because Nanny can’t miss “her Steve Harvey”.  Going for long walks in 80 degree, sunny weather.  Making a late night run (literally running) to the grocery store because someone (yep. me.) needed a chocolate fix.  Throwing together a surprise 77th birthday party for Nanny.  Even better, Kilah asking about Nanny’s balloon and cupcakes and therefore, blowing the surprise 77th birthday party for Nanny.  Kilah seeing the ocean and yelling “HI OCEAN!!  I LOVE YOU OCEAN!!”  Thrift store shopping.

Someone mentioned that we should make a map of how far we drove on our adventure.  Well, here it is:

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Wowzers!  That’s a lot of driving.  On our way home we drove about 20 minutes out of our way to stop in Nashville.  We did not want to try to drive the 22 hour drive straight through with a 2 year old so we made at stop at Jim’s house.  A long time friend of mine and, not to mention, one of the greatest I’ve ever had.  Also, a most gracious host we were so thankful for a cozy bed and a good night sleep.  It was the next best thing to our own beds (by this time we were a little eager to get home).

While in Baltimore we were told that Kilah would need to wear her cast for 4 weeks.  We scheduled a cast removal date.  It seems that that date is already upon us.  It’s hard to believe that 4 weeks have already breezed by but I guess we really “had it rough” for the first two (wink wink).

Here are some photos from our trip:

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The “Surprise” Party

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Playing on the floor with Papa “Larren”

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“HI OCEAN!!  I LOVE YOU OCEAN!!”

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Pretending. Serious Business.

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Mimi cuddle time

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Fun times

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Kilah and her best friends; Nanny and Chico

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Just 45 minutes after surgery

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The Green Machine

Thank you for reading!  Thank you for praying!  We love you.

Christmas Cards and Medical Bills

It has been some time since the last blog post.  There has been a lack of action regarding Kilah’s leg, to which we are very grateful.  When we first arrived home from Baltimore we worked with Kilah so that she would use her walker.  It took some tough love to get her walking again but now she practically runs.  We also had the adventure of weening her off of her narcotic pain killers and switching her to Tyelnol  for pain control.  This wasn’t a very fun process for any of us.  However, it is now a thing of the past and I barely remember the sleepless nights during those days.  She has not been taking any pain meds for quite some time now.  I’m so glad she is not in any pain.  The incision site continues to heal nicely.  Over all, there has not been any drama and we are very thankful.

The lack of action regarding the leg does not mean there has been a lack of action regarding Miss Kilah Jane.  This little munchkin keeps us laughing.  Everyday it is something new with her.  Currently, she has an obsession with closing all of the doors in the house.  She apparently learned how to take off her shirt during “nap time” today.  She loves to sing at the top of her lungs (just like her mommy).  She can now sign “I love you” and usually pairs it with a hearty “uhga mahga!” (a term of endearment taken from Daniel Tiger’s Neighborhood).  Hide and seek is her game of choice and she’s quite good at it.  Who has time for any worries with this much fun and giggling going on?

We would ask for continued prayers for no infections.  We are very happy to report that we have only had 1 infection.  I have heard many stories from parents that had constant battles with infections.  We are also happy to report that Kilah has a removal date set.  January 4th will be her surgery to remove the Fixator.  We are anxious to go back to normal life and this Mommy is especially excited for Kilah to wear jeans again and unaltered clothing.  The fixator removal surgery is an Out Patient procedure.  As long as everything goes as planned, we will only be in Baltimore for a couple of days.  Once the fixator is off she will have a cast on her leg for about 4 weeks.   We will then be making one more trip to see Dr. Standard so that he can remove the cast and get some final X-rays.  We’re in the home stretch, folks.

Today when I got the mail there were 4 Christmas cards and 1 medical bill. Although the bills are starting to roll in I’m very thankful that they are off set by so many Christmas Cards.  This seems to balance things out a bit.  🙂  We are so thankful for all of the financial gifts that SO MANY have given.  To those of you who purchased shirts, gave us a financial blessing, and circulated the blog:  Thank you!  Thank you! Thank You!  Here we are with the Christmas Season upon us and are looking at a metal contraption on our little daughter’s leg.  A couple of years ago when I was carrying this little blessing inside of me I never imagined we could be catching our breath from our daughter’s first surgery.  Well, here we are and we truly have peace.  A peace that can not be understood just as the word of God promises.

“Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.  And the peace of God,which transcends all understanding, will guard your hearts and your minds in Christ Jesus.” – Phil. 4:6-7

Thank you, Father God, for the gift of your Son, Jesus.

 

"Uhga Muhga!"

“Uhga Muhga!”

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Fun outside using the walker

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Raking with Daddy

Raking with Daddy

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Playing at the Park

Playing at the Park

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Shower Time

Shower Time

Our Little Artist

Our Little Artist

I will be putting in one last order (until February) for shirts this week so that they will be back before Christmas.  If anyone would like one please let me know.

We now have adorable hoodies too!!

We now have adorable hoodies too!!

Adult T-shirts – $20

Youth and Toddler T-shirts – $15

Adult Hoodies – $30

Youth and Toddler Hoodies – $20

Thanks for Reading and Thanks for Praying.  ❤

We’re Going Home!

I must keep this short and sweet because we are leaving tomorrow morning and we have 3 weeks worth of mess to pack up.  Kilah’s cuteness tends to attract stuffed animals so we have a few extra passengers for the ride home in our little Alero.  One such Stuffy came today in a wonderful package.

 Here are a couple of pictures of Kilah and the goodies:

^ This is Kilah’s “CHEESSSSSSSE” face.^

We saw Dr. Standard today and he told us we can discontinue turning on Kilah’s Fixator.  He is pleased with the position that the bone is in and said it is very likely that she will have her fixator off in 6 to 8 weeks!!  Yipee!  Doc also said that we have gained a little under a cm. in length from the straightening process.  Yay!!  The thing I was most excited about was when he said, “Your pin sites look so good. These could be the best looking pin sites I’ve ever seen.”  Yep.  He really said that!  Glory to God.  🙂  I told him we’ve been praying for no infections so we’re glad to hear him say that.

Our schedule now looks like this:

  • X-rays in Michigan in 4 weeks
  • Trip to Balitmore to get the Fixator off in 6 to 8 weeks (Dr. will give us an exact date after seeing 4 week X-rays)
  • Cast goes on when fixator comes off (cast on for 2 weeks)
  • Return trip to Baltimore to remove cast and check up
  • 6 month check up and discussion for limb lengthening next Fall
  • Next Fall begin Limb Lengthening process

Pictures of Kilah at the Doctor’s office being a silly goose.  She loves everyone here and is the same social sweetheart that she is at home.

Pictures of Kilah’s X-Rays

Before and After:

Above is the before X-ray.  You can very clearly see her “wanna-be fibula” as one doctor dubbed it and the bow in her tibia.  You can also see her discrepancy is in her tibia (or bottom portion of her leg) as well as her femur (top portion of her leg).

We learned today that Kilah no longer has her “wanna-be fibula.”  Apparently it was removed during surgery because it serves no purpose.  I was a little sad when I learned this.  You will see that it’s missing in the after X-rays.

Above: From these before and after shots you can see the correction of the bone and the length we gained while straightening.

Above: One more angle to show the “Super Ankle” development.  You can see the pins/wires that go up through the bottom of Kilah’s heel to affix the ankle so that it heals properly.  Also from this angle you can see the new bone growth in the break of the tibia.

Again I would like to thank everyone for all of the financial blessings!  We have been overwhelmed by the love and support we have received and continue to receive.  As you can see there will be multiple trips back and forth from Michigan to Maryland.  The financial blessings will go a long way to help us with all of these expenses.  🙂

Thanks for buying shirts and for sporting them so proudly.

Mostly, thank you for praying.  We love you all!

Making Friends

There really aren’t any new things to report on Kilah.  A week ago we saw Allison (Dr. Standard’s P.A.).  Tuesday and Thursday we had Physical Therapy appointments and we were anticipating an appointment today.   Allison emailed us on Friday and said that Dr. Standard wanted to see us on Thursday Oct. 18th and do X-Rays to see how Kilah’s straightening is progressing.  We changed our Monday appointment to Thursday and here we sit.  There was one day of considering going home.  If we left Friday, we would have about 5 full days at home before we would need to return.  We did some calculating and decided the gas to go home and back would be about the same cost as staying here until the 18th.  Even though our hearts miss home and even more our backs miss our bed, we thought it best to stay near this facility for Kilah’s sake.

So far we have had no infections!  This is a major praise report.  We were told in our class that educated us on the fixator and it’s required care, that they have only seen a handful of cases that had zero infections.  Every child patient, with a fixator, upon leaving the hospital is given a prescription for antibiotic in powder form/along with distilled water.  This way you can have it on hand when an infection happens.  Children don’t swallow pills so they need the “pink bubble gum stuff”, as I used to call it when I was a child.  This only last a couple of weeks in the fridge so in order to have it at the ready you get the premixed kind.  You, then, mix it yourself when (not if) you need it.  These infections can become very serious very quickly so it’s important to start using antibiotics as soon as there is any sign.  If left untreated, a pin site infection can become a bone infection and can, in some cases, result in hospital time and a picc line.  We are watching each pin site very closely.  We pray over Kilah’s leg multiple times a day.  We’re believing for the best possible transition.

Here are some photos of Kilah’s leg taken this morning:

Above is a photo of Kilah’s leg when it’s all “done up”.  After we clean her fixator and her pin sites we put a sponge around each pin.  The sponges help keep dirt/bacteria from entering the pin sites.  They also dissuade little hands from exploring.  In this picture you will also see her splint.  The splint (or “spit” as Kilah calls it) goes on and off throughout the day.  It is meant to keep her toes and foot from drooping.  Normally we cover the whole thing up with a one of our fixator covers.  Kilah is not fearful of the fixator and, actually, is quite fascinated by it all.  She loves helping with the sponges and the splint and often I catch her opening up her cover and “working on things” all by herself.  We try our best to keep her hands away from her pin sites but we’re pleased to see that she’s adapted so well.

Above are photos of each side and the top view.  If you can remember from the last photos I posted you will see she is healing up quite nicely.

One of my favorite things about being here at the HP House is all of the people we are meeting.  I love talking with everyone and hearing each person’s story.  We have seen lots of people come and go in the time we have been here.  When we go home Kilah will be 1 in 40,000 again but while staying here at the HP House she’s only about 1 in 3 people in need of some kind of correction.  🙂  There are so many stories but I’ll share a couple of my favorites with you.

Probably my favorite story so far is that of Mira.  Mira is a 6 year old who was adopted from China 6 months ago by the Newmans.  This family adopted Mira with very severe leg deformities.  Kilah and I have spent lots of time playing in the playroom with Mira and 2 of her sisters, Sammy and Kayla.  If you were to meet Mira you probably wouldn’t know that she’s only been in the States for 6 months,  you probably wouldn’t know that she knew no English when she arrived, you probably wouldn’t know that she just had surgery on both of her legs (aside from the cast and fixator), and you probably wouldn’t know that this girl was once labeled “un-adoptable”.  You would know that Mira is stronger because of it, sweet to the core, very intelligent, and has a wonderful sense of humor.  You absolutely MUST read Mira’s story.  Check it out here: http://www.leapingformira.blogspot.com You will be amazed as you read and see the photos of this sweet little girl.

I was helping Mira make Turkey Hands.  🙂

Elizabeth is a little girl we met today.  I can not remember the name of Elizabeth’s diagnoses but her father explained to me that her case is very unique and she is somewhere around 1 in more than 750,000.  Elizabeth is 7 years old and has had 20 surgeries on her legs.  Dr. Standard believes that he is finished working on her legs but tomorrow they begin work on her arms.  This family reports for surgery at 7am tomorrow morning.  Please say a prayer for little Elizabeth tomorrow morning as she goes in for surgery number 21.  Here is photo of Elizabeth and Kilah playing “dinner time”.  And, yes, Kilah is crying in this photo.  We left right after this to go back to the room for a nap.  We’re hoping we get to play with Elizabeth a little more tonight before bed time.

I will attempt to get more photos and tell the stories to go along with them in the next couple of day.

Thanks for reading. Thanks for praying.

Day at the Zoo

Today we visited the Maryland Zoo.  After doing some internet searching, we figured out that the zoo is located literally 3 miles from where we are staying.  We checked out the weather and today seemed like the best option.  It was about 73 degrees today and partly sunny.  Perfect!

Here are some photos and some highlights from the day:

(If you click on a photo it will open up a photo viewer of all of these photos)

So many wonderful memories!  Kilah’s first Carousel ride.  “The Many Faces of a Tortoise” by Brandon.  We enjoyed getting close and personal with a giraffe (I got to feed it!), a penguin, an adorable little owl, goats and donkeys.   Kilah said Hi and Bye to every animal.  So cute.

One of the greatest things about the day was that Kilah did some standing and a little walking.  She was enjoying the animals so much that she didn’t even notice if there was any pain.  Also, there was a ton of cuddle time with mommy and daddy.  We carried Kilah a lot today and loved every minute of it.  It was quite the work out!  Nothing a little ibuprofen won’t take care of.  The last couple of pictures are at the end of our adventure while we are waiting for the zoo tram to pick us up.  Sleeping toddler=success?  I think, yes!

~Look for some videos on our YouTube Channel of the Zoo too~

Over all would give The Maryland Zoo a 9 out of 10 (10 being the best).  It was very kid friendly and the exhibits are set up so that you are very close to the animals.  It was clean and the employees were very friendly and eager to educate.

On the medical side of things; we found out today that our appointment for next Monday with Alison (the P.A.) is being changed to Thursday with Dr. Standard and X – rays.  We are guessing that he will tell us we can go home after that appointment.

Kilah has her 2nd PT (physical therapy) appointment tomorrow.  I will update you tomorrow on how that goes.  I think it will go much better than Tuesday because we are scheduled for 9am.  Tuesday our appointment was at 2pm which is exactly at nap time.  ugh.

Ways to continue to pray:

For less and less pain for Miss Ki

For NO infections (so far so good)

For Kilah to become more mobile

Thank you again for all of your love and encouragement and prayers!!

Feeling Better

Today is one week from surgery!  Can you believe it?  It’s amazing how well our little buggar is doing.  Kilah woke up very much herself this morning.  Aside from running and climbing she seemed her same “spirited”, yet sweet, self.  After her shower we cleaned up her pin sites and reapplied sponges.  This is a daily routine.  It’s the new normal for Kilah and she is very eager to get in on the action.  She loves to place sponges on her leg and say “allllll better, momma!”  Today after we were done applying sponges she said, “kank you mom! Kilah’s alllll better. Fits-ator off now.”  It seems our little sweetie is back with us.

Here are some photos from our morning routine:

Kilah enjoys her shower time except for rinsing her hair (pretty normal 2 year old).  We take toys in the shower and wash them too.

                                                                                                         

Here is how Kilah’s leg is healing up.  On the right side of her leg she had about a 6″ incision.  It’s healing up nicely.  Also, you can see her smiley face from Dr. Standard is still fully intact.  🙂  Today someone told us it can take 2 months for them to fade and that many times kids are sad to see the smiley go.  

We had our first physical therapy appointment today.  It was hard but our little trooper did very well.  During some of the stretches Kilah would say, “ooo ouchie.”  You will see in the photos that Sara was handling the stretches and Shoshana was handling the distracting.  Coloring was the distraction of choice for stretches.  Then it was onto walking and trying to get Kilah to use a walker.  She wants absolutely NOTHING to do with the walker.  She didn’t use the walker today but Sara thinks we will get her used to it soon.  I’m not so convinced.  heehee.  Without the walker, Kilah did take some steps while holding onto Sara.  We were told that it is no longer much of a pain issue but more of a fear issue with walking.  That was good to know so that we can push her a little more.

Kilah and I made a trip to the playroom (she calls it “bedroom”) yesterday evening.  We spent most of the time coloring.  With her wagon right next to the kid size table, she was able to stand and color for about 30 minutes.  This was the longest she has stood since surgery! I was really excited but I didn’t say a word.  I knew if I said something about it, down she would go.  She tends not to want to do anything mommy or daddy want her to do.  Here are some pictures of our color time and our art work.  An even bigger deal is that Kilah started drawing faces yesterday for the first time!  After each one she pointed and said, “Kilah.”  You will see from the picture that they are not very happy faces.  Telling, eh?  There is one that has a smiley face and that is because I asked her to draw one happy.  She may be an artist like her daddy or a crafter like her mommy.  If it’s up to me, she’ll do both. 🙂

Tomorrow we go to the ZOO!  We are all excited to get out of our room and do something fun.  The zoo is 3 miles from where we are staying.  The weather is supposed to be perfect.  Yay!!

Questions Anyone?

I realize there are questions that I’m not answering.   It’s difficult for me to remove myself enough from the situation so that I can inform you readers thoroughly.  I will try to answer some of the common questions that I have been hearing in the last couple of days.

1.  When are we coming home?  That’s a good question.  🙂  We would love to know that answer, as well.  In our opinion, the sooner the better.  However, we want the absolute best for Miss Kilah Jane.  The doctor wants us to stay for the entire adjustment time.  Normally that is about 2-3 weeks.  We will have X-rays and a doctor visit next Monday morning.  At that point Dr. Standard will look at the before X-rays and the current X-rays.  He will be able to tell us how many more turns will be required to achieve our desired result.  So, I guess the answer to this question is not really much of an answer at all.  Hopefully we will be able to answer this next Monday.

2. How long will Kilah have to wear the fixator?  This is another good question to which we do not have a definite answer.   The doctor said about 2-3 months and then the fixator can some off.  Once we are done with the adjustment period she will have a time of healing and the fixator is necessary to hold the bones while she is healing.  We expect that we may have to make a trip to Baltimore in November for a check up to ensure everything is going correctly.  When Dr. Standard feels it is the appropriate time we will be back for removal.  Kilah will undergo anesthesia again. However, thankfully, this time it is an out-patient procedure.

3. Is she walking? Will she walk/play?  Will it continue to hurt her?  Kilah has not started walking yet.  It is still very painful and the fixator is heavy for her little leg.  We have been reassured that she will be moving quickly in no time.  Last night, while we were playing in the playroom here at the HP House, a family checked into their room. They have a 2 year old little guy named Jagger (just a little older than Kilah).  Jagger is in the middle of limb-lengthening currently.  He has had his fixator on for a couple of months.  When they arrived he ran down the hall, tore into the playroom and rip apart the play room in a matter of minutes.  I have never been so pleased to watch a toddler make a mess.  Brandon and I were very encouraged to see Jagger getting around so well with his fixator on.  Kilah will be able to play, walk, run, and most anything she was doing before she had a fixator on.  Once her incision heals, the skin around the pins heal, and her muscles relax she shouldn’t experience much pain during the healing faze.  I’m very much looking forward to taking her to the park once she’s feeling up to it.  My girl LOVES to swing.

4. Will she need to wear a cast during this process?  Finally a question I feel relatively confident about.  Yes, Kilah will need to wear a full leg cast for, I believe, 4 weeks after the fixator comes off.  When they cut the cast off they will give it to us to use as a removable cast.  This way she can continue to wear it a little longer but we can bath her more thoroughly.  🙂

I hope this answers some of the lingering questions.  If there are more, please let me know.  Please continue to hold us up in prayer.  We are attempting to cut back Kilah’s muscle relaxers and would like prayer for no more spasms, quick healing, less and less pain, and for her tibia and ankle to perform exactly as Doc has intended.

Below: We are learning all kinds of new ways to keep a toddler entertained.

PBS App on the IPod.