Thursday, May 15, 2014

Almost home.......

Looks like we are down to the final few days of our stay in West Palm Beach.  Here is the latest:

Right leg - She had surgery on Monday to remove the pins and 8-plate.  Surgery went very well, and Dr. Paley was pleased with how the ankle looks.  She is already putting weight on the leg!  She will need to wear an ankle brace when she sleeps and requires a 5 cm shoe lift.  We will get the ankle brace made in Baton Rouge but want to get the shoe lift done here in Florida.  Shoe lift is expected to be ready on Monday.

Left leg - Fixator is still on her left leg and will be on until the new bone completely hardens.  This should take another 3 months.  All of the pin turning is complete!

So all we are waiting on now is the shoe lift.  Once we get it, we will take Eloise to therapy for them to check it.  Hopefully, we can get all of this done on Monday.  If so, we will be pulling out of town Monday evening and arriving back in Baton Rouge on Tuesday!!!

Look forward to seeing everyone soon!  Thanks again for all the prayers and support!






Friday, April 18, 2014

More pin turning

Eloise had a check-up today with Dr. Paley.  Her tibia on the left leg has bowed outwards with the additional length (so it appears to be a backwards "c"). We were given a three week turning schedule today that will basically shift the lower half of her tibia around one of the rods in her leg creating more of an "s" shape which will straighten as she grows. 

Our next appointment is May 12th to check the status.  We are hopeful this will complete the pin turning - keep your fingers crossed!!  We will also check the buckle fracture on the right leg which should be healed by then.  If it has, we can schedule removal of the pins from the right ankle.  We are thinking an end of May departure date now.  

As always, she is in good spirits.  We hope you and your families have a Happy Easter.  Love to all!


Friday, April 11, 2014

UGH!!!!

Well, so much for all the good news that I have been posting!  Yesterday, I fell down the stairs carrying Eloise, and she fractured her right tibia!  She was put in a full leg cast and will probably need it for 3-4 weeks.  Luckily, the fracture / fall did not affect her left leg or her right ankle.  Our poor girl has been through so much so far!  But as always, she is back in good spirits.

She will have to get fitted for a shoe lift on her right side so this means we will not be able to leave Florida until the cast comes off.  We are guessing mid-May for a departure date now.  She is still scheduled to get the pins removed from her right leg on April 21st.

All in all, it's not too bad.  It could have been a lot worse!  As always, we appreciate the continued prayers.


Monday, April 7, 2014

Another encouraging appt today

We met with Dr. Paley today, and everything looks great!

Right leg:  Ankle looks great; pins are scheduled to come out on April 21st.  Once the pins come out (outpatient surgery) we will have to get Eloise fitted for a shoe lift and possible ankle brace.  Hoping this only takes a few days so we can get home!!

Left leg:  New bone growth looks excellent.  We are finished lengthening but she needs 1 week of strut tweaking to get everything in line for the bone consolidation phase.  We start tweaking today and have more x-rays next Monday.  Once tweaking is done, we can come home for the consolidation phase.  This usually lasts another 3-4 months.  She will not need an eight plate because the tweaking of the fixator will correct her knock-kneedness.

Looking like we are on track to leave the last week of April or first week of May. We are ready to get back and see everyone!!!  Thanks for all the prayers and support!




Wednesday, March 26, 2014

Update

Eloise had a checkup on Monday on both the left and right leg.  Her left leg lengthening is on schedule.  She already has achieved 5 cm of new length and only has 1 more week of lengthening!!  Usually there is some sort of tweaking (turning the fixator struts to ensure the new bone is exactly where it needs to be before consolidation) that is needed after lengthening, but we will not know if Eloise will need it for another few weeks.  This is probably the one thing that could keep us here longer than expected.  Some patients need a month or two of tweaking.  We are hopeful that if Eloise does require tweaking, it will be very minimal.  The only new news that we received is that Eloise will need an eight plate in her left knee / femur because her femur is slightly bent.  The eight plate will prevent knock-kneedness.  It is a simple, outpatient procedure and will be done on April 21st.

Her right ankle looks great.  Her hard cast was expected to be on 8-12 weeks but was removed on Monday (6 weeks since surgery) because of her amazing progress!  She now has a removable cast on for the next couple of weeks to protect her ankle.  She is scheduled to get the pins removed from her leg on April 21st.  Because the hard cast prevented her knee from bending, she is having to regain strength in her leg muscles.  Needless to say, therapy is a bit of a challenge right now!!

All in all it was an encouraging day.  Our next big appointment is on April 7th.  Hopefully, we will find out a lot more about the tweaking on her her left leg during this appt.  This will give us a better idea of when we can expect to come home.  Hope everyone is doing well!


Sunday, March 16, 2014

Great progress!

A lot has happened since our last update.  Visitors have come and gone, Eloise has finally given up on crying during therapy and Charlie has added a few more Cars to his world record collection. 

All of Eloise's checkups have been perfect.  Her bone is growing as expected, (already over 4cm of new bone growth!) and she has not had any more pin site infections.  We will meet with Dr. Paley again on the 24th to check her bone growth and also to examine her right leg.  We are hoping to get a good report so the cast can come off as soon as possible.  If all goes well, we may be able to come home in the middle of April!  The way time is flying by here, that day will be here before we know it.  We are soooo ready to get back to Baton Rouge.

We really enjoyed BetBet's week long visit a few weeks ago.  I think Charlie enjoyed it the most as his Cars collection tripled by the end of the week!  Aunt Lee Lee and her entire crew also came to see us for a few days.  The cousins were so excited to play with each other.  Charlie and Eloise were definitely missing their play buddies.  We were sad to see them go, but they will be back to playing together before they know it.   

Another adventure since the last update was Uncle Brad and Charlie's trip to Magic Kingdom last Monday.  Let's just say that Charlie did not get any character autographs!  He was a bit frightened by the life-sized Chip and Dale so their stay at the park was short lived.  Then it was off to to the Cars section of the Art of Animation Resort.  Charlie was in his element.  All of the Cars characters received big hugs from their #1 fan.  I guess we know where we are staying when we go back. 
  
Eloise has been doing great the last 2 weeks in therapy.  I think she has fianlly realized that crying is not preventing any of the exercises and stretches.  She is walking with the walker by herself without crying!!  She is even climbing the staris at our condo.  Her determination is remarkable!  They may even cut her therapy sessions to 3 days per week instead of 5 because she is proressing so well.

Here is a video of our trooper in action!  We will continue to update when we get new information.  We are ready for Oma's next visit next week!  Hope everyone is doing well and enjoying the welcome change in weather! 





Wednesday, February 26, 2014

Home and 6 week checkup

Sorry for the delay with this post.  Eloise did go home from the hospital on Monday and continues to do well.  She was sent home on an oral 7 day antibiotic.  We are back on our normal routine of therapy 5 days a week for 1 hour a day.  Therapy sessions continue to be a challenge, not because Eloise is not able to do the exercises, but because she doesn't want to do them!  She is able to get around pretty well with the cast and fixator.  She has mastered the scoot and gets to where she wants to go in no time.

Eloise had her 6 week checkup on Tuesday for her left leg.  Everything looks great!  She has gained over 3cm of length in both the fibula and tibia.  Here are a few pictures of her last X-ray. Amazing!


Sunday, February 23, 2014

Should be going home tomorrow!

Eloise has been doing very well the last 2 days.  She hasn't had any fever since late Thursday and all of the tests have come back negative.  Our sweet, energetic Eloise is back!   We think the infection was caused by a pin site on the left leg or the incision on her right leg since none of the other test showed anything.

She is acting and feeling well enough to go home now, but she needs to stay on the IV antibiotics for 72 hours.  They then need to analyze her blood work before discharging her.  This means we should be out of here some time tomorrow.  Although we would like to get out of here today, we know it is better to be safe and get her a full dose of the antibiotics.

I will hopefully be back with another update tomorrow titled "We are out of here!"  Have a great Sunday!





Friday, February 21, 2014

Another infection :(

Yesterday poor Eloise had a looooong day.  Her 11:00 am therapy session didn't go so well and one of her pin sites looked a little red so we went to see Dr. Paley's assistant.  Well, they took her temperature and it was 103!  We initially thought it was due to an infected pin site on her left leg, but the PA wasn't convinced that it looked severe enough to be causing such a high fever.  He also told us that it could be the an infection from the incision on the right ankle.  But instead of removing the cast on the right leg to check out the incision, he suggested we see a pediatrician to make sure it wasn't an ear infection or something else unrelated to her legs.

The pediatrician did not find anything out of the ordinary so it was back to Dr. Paley's office to get the cast removed and checkout the incision on her right ankle.  Dr. Paley took a look at the incision and thought it looked a little red but nothing severe.  They decided that since they were not 100% sure where the infection originated from, it would be best to get us in the hospital on IV antibiotics and run a few tests.  

We finally got to our hospital room around 8:30 pm last night.  They took some blood and a urine sample and then got the IV started.  All of the tests (flu, pneumonia, uti) have come back negative which leads the doctors to believe the infection started from either a left leg pin site or the right ankle incision.  Her fever was still over 102 late last night but after the IV antibiotics got in her, she has been fever free!  I believe they will keep her in the hospital until they are comfortable that they have the infection under control.  I suspect that will take a few more days.

Once again, Eloise has been such a trooper.  Take a look at a few pictures of our smiling princess today.  We will keep updating the blog when we get more information.  Thanks again for all the love and prayers.  It really means a lot to us.  We are so lucky to have all of you with us!




Tuesday, February 18, 2014

Week after surgery

It has been 1 week since Eloise's last surgery.  She is still doing very well.  No pain meds needed since we left the hospital.  Only time she really complains is when we are doing pin turning and pin cleaning.  Therapy started again yesterday and as expected, she is less than thrilled about walking for her therapist.  But she does it and continues to impress us with her determination.

She did need a new cast today.  The old cast was sliding down her leg so it needed to be replaced.  We hope this is not a recurring thing as changing a cast is quite an ordeal with a screaming 20 month old!  Here she is walking yesterday in therapy.  Again, not too happy about it but gets it done.  We are so proud!


Can't believe it has been 6 weeks since her first surgery.  Time surely has flown by which is a good thing - we are ready to get back home!  We enjoyed Oma's visit last week and look forward to BetBet's visit next week and Aunt Lee Lee and her crew in 2 weeks.  And of course, we have enjoyed the frequent visits from Uncle Brad!  Talk with y'all soon.  Stay in touch!




Friday, February 14, 2014

Home with new cast

Eloise was released yesterday afternoon from the hospital and is in great spirits.  No pain meds needed since we left the hospital!  She did have a rough night because it is difficult for her to get comfortable.  Hopefully, that will get better as she gets used to her new cast.

Today, Eloise got her temporary cast replaced with a permanent one.  And, of course, it is pink!  She loves it.  She is already standing and will soon be walking.  She is such a determined soul.  We are so proud of her!

Happy Valentine's Day!





Wednesday, February 12, 2014

Doing well

Eloise had a good day today.  Still on the pain meds but has been up most of the day in a fairly good mood.  The only time she really gets upset is when the nurse or doctor comes to check on her.  Her big surprise today was when Charlie got here.  She was so happy to see him.  He was really happy to see her too!  He told her that "everything is going to be alright."

We will probably get discharged tomorrow.  Looking forward to getting her back to the condo.  Will update once we get home! Miss you all!




Tuesday, February 11, 2014

Successful surgery!

Everything went well today. Both procedures went according to plan with no surprises. We are in a room and will probably be here for 2 nights. Eloise is in good spirits and we have even seen a smile out of her already. As we thought, her right leg is in a full leg cast.  It comes all he way up her thigh. Still trying to figure out how we will get her in a car seat to get her home!!

Here is our sweet little angel.  She is such a trooper!  Thank you to all for the prayers today!


Monday, February 10, 2014

Surgery tomorrow

We had a long day of pre-op and doctor appointments today, but the good news is that Eloise was cleared for surgery tomorrow.  Surgery will probably begin around 8:30 am.  Dr. Paley will be correcting Eloise's ankle and straightening her tibia.  The ankle procedure, called superankle, will be similar to the procedure that was done on her left ankle.  However, the right ankle is in better shape than the left so as Dr. Paley said, "it will be an easy one."  We were happy to hear that! 

Dr. Paley did want to go ahead with another procedure that we were not expected to have tomorrow.  Her tibia in her right leg is a few degrees off center causing her knee to be in a valgus position (knock-kneed as opposed to bow-legged).  This is a simple fix and is done by inserting an eight-plate in her tibial growth plate in the knee area.  This eight-plate (called that because it looks like the number 8) helps the tibia to grow straight and corrects and prevents further knee issues.  It was a surprise but not a concern as it is a relatively mild procedure.  The eight-plate stays in her leg for about a year.

The ankle procedure will require Eloise to be in a cast for 8-12 weeks.  The unsettling part of this is that they probably will have to put her in a hard cast up to the thigh.  They are concerned that a cast just below the knee will come off too easily since her foot is so small.  This means no knee bending for 2-3 months!!  Not sure she will be too happy about this!

The good news we got today was that her left leg growth is progressing as scheduled.  So far, she has over 2 cm of length in both the tibia and the fibula.  She only has 6 more weeks of lengthening to go!!

We will update the blog tomorrow after the surgery.  Stay tuned!          

Tuesday, February 4, 2014

New condo, pin site infection and next surgery

Well, it has been quite some time since my last post.  A lot has happened in the last week and a half.  First, we moved out of the Quantum House and into a condo.  The Quantum House was such a great place, and we hated to leave there.  We made plenty of friends and ate wayyyy too much food!  We are getting settled in the condo and are enjoying the extra privacy and the adult beverages with dinner!  Charlie misses his play buddies at the Quantum House but is having no problems adapting to his new home.  The condo is in a great location - Juno Beach.  The beach is walking distance from our place, and there are plenty of parks close by as well.  And the best thing about it is that Tiger Woods lives about 5 miles from here.  I will be grocery shopping at the Publix near his house in hopes of running into him.  Let's just hope I don't get arrested for stalking.  Here are a few pictures of the condo:






Eloise has been progressing very well.  As I mentioned in the last update, her bone growth has been on schedule.  We meet with Dr. Paley on Monday to get the 4 week update.  Up until yesterday, her pain level has been very low, even during pin turning and pin cleaning.  Last night, she really had a tough time with the pin cleaning, but we figured it was normal as we have been told it can be painful from time to time.  Well, she had a very rough night and was still in pain this morning.  We knew something was up.  Sure enough, the therapist took a look at one of her pin sites and told us it was infected.  This is what was causing all the discomfort.  Pin site infections are very common and are treated with antibiotics.  Here is what it looks like




Nothing to worry about but need to treat it so it doesn't get worse. It has been a rough day for her but hoping that is starts getting better soon.  Therapy sessions have been productive.  Eloise hates walking for her therapists, but she toughs it out and gets it done.  This is a normal walk down the hall for Eloise.  She will soon be walking on her own!!


Next Tuesday is Eloise's next surgery - superankle surgery on the right ankle.  It will be similar to the procedure Dr. Paley performed on her left ankle 4 weeks ago.  She will not need lengthening of the right leg so no fixator!  She will be in a cast for 8 weeks, but it will be built up so she can put weight on it.  Cross your fingers that her runny nose and cough are out of here by next Tuesday.  Definitely do not want to delay it!!

It has been quite an experience so far.  Eloise has been such a trooper through all of this.  We are so proud of her.  Here are a few random pics and videos.  Again, thank you all so much for the prayers and support!











Sunday, January 26, 2014

X-rays and pin turning

It has been a little over 2 weeks since the surgeries.  Eloise is progressing very well.  We had our first follow-up visit last Thursday.  Here is the x-ray of her tibia and fibula.  As you can see, she is getting some length!  So far, she has added 1cm to her tibia and fibula.  The space that you see is actually soft, liquid bone that will harden in the next few weeks.  Dr. Paley is projecting 5cm of new bone growth throughout the lengthening process.



You can also see the pins going through both the fibula and tibia in the x-ray.  These pins come out of her leg and are attached to the external fixator.  The fixator is equipped with 6 struts that must be turned in order to separate the bone.  A computer generated program tells us which number the strut is supposed to be on each day. The strut below is strut #6.  As you can see on the sheet, strut #6 should be on 106 on day 12 (today).  Tomorrow we will turn it to 107.



Occasionally, the turning of the pins causes Eloise some pain.  But overall, her pain level has been very low.  We have not given her medication in over a week.

Eloise has also been doing very well with her walking.  She is even walking on her own with the walker.  Big brother Charlie has been cheering her on!!



Saturday, January 18, 2014

First Steps!

Eloise took her first steps at therapy on Friday.  We are so proud of her.  She is doing better each day! And Charlie made it down yesterday.  Eloise was so happy to see him (and so were mommy and daddy).  Hope you all have a nice weekend.


Thursday, January 16, 2014

Therapy

Sorry it has been so long since my last post.  Things in West Palm are progressing well.  Eloise is going to therapy 5 days a week for an hour a day.  We also see the orthopedic specialist who checks her blister that formed around her incision.  He is not worried about it, just monitoring it until it pops.  Each day seems to get a little better for Eloise.  The first 3 days of therapy were tough.  Today, however, was a lot better.  During the stretching part of therapy, Eloise hardly fussed at all. She is still fighting the weight bearing exercises, but I think that will get better by next week.  Here is a picture of her putting some weight on the left leg.  We are thinking it will take a few more weeks until she is walking.


Overall, her mood is slightly improving.  She is still not a fan of strangers because she thinks every new face will inject her with something or twist her leg.  But she has her moments of laughter.  I am sure it will get better once Charlie is with her.


Another milestone we hit this week was bath time!  We are finally able to get the fixator wet.  We can't submerge it yet, but she can take a shower.  We decided to put a small chair in the tub as it seems to be the best way to get her clean.  She is not a fan!!!



We all are adjusting well to our new routine.  We are so excited to see Charlie tomorrow!!  He arrives with Oma and Pawpaw at 11:00 am!  His bed is ready for him at the Quantum House.



Tuesday, January 14, 2014

Quantum House

We moved into the Quantum House on Sunday.  The Quantum house is similar to a Ronald McDonald House.  It is located on the hospital site and can house 10 families at a time.  We will be here until February 1st.  Some of the great things about it are

- we can walk to our therapy appointments everyday
- they have a huge playground outside which will be great for Charlie when he gets here on Friday
- other families with similar conditions are staying here so we get to share our experiences with them
- the volunteer work in the community for the Quantum House is amazing.  Every night a different group comes over to fix dinner and most days there are crafts or other activities that volunteers put on (today was a visit from a few companion golden retrievers).

Of course, there are privacy issues as all 10 families are sharing a kitchen, living room and play area, but we are definitely enjoying the experience.  Here are a few photos:














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