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!

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!

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!

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!

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!

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!

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!

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!          

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!