video of Jake walking one week after super hip 2 surgery

Jake is getting stronger and stronger everyday!! We are so proud of you Jake! 

One Week Post Op!

Today marks the one week mark since Jake's surgery.  We have a follow up appointment today with Paley's group (don't think we will see Paley b/c he is in surgery).  Jake was discharged on Sunday from the hospital and is resting comfortably at the hotel.  We have been going to PT everyday to try to help Jake learn to walk with his hip locked in the fixator and to get some range of motion back in his knee which is really tight.  He is not a fan!  He asks us if we can leave and never come back.. "deal" he says... :-(  It will take a while for him to be independent.  He still has a lot of pain and finds it uncomfortable to stand and move around.
Pray for his comfort and desire to learn to be more independent.  He is very fearful of the pain and that holds him back from wanting to try to walk or stretch.

Brother time!

"Cheers!"

Yummy!

Charles turned 35 on Sunday!  We were able to get out to a restaurant while mom watched the crazy kids!  "Thanks Mom!!"  xoxo
Also, Mom helped us sew a pair of shorts to fit over Jake's fixator.  Kristen Hafner lent us the sewing machine (along with a lot of other toys and baby/kid essentials to borrow while we are here.. A BIG THANK YOU HAFNER FAMILY!!)

We are getting ready to fly back home soon!!  We leave WPB on Friday morning!

Day 2 and Day 3 post op

Our Jake is being such a trooper!!  He had his catheter and epidural out today and we are weening off the IV meds and switching over to PO meds (oral).  Trying to get a 4yo to take medicine every 4-6 hours for pain that tastes gross is NOT easy.  We are on track to be discharged tomorrow!! YAY!  Please pray for our transition out of the hospital to hotel/home.  His leg is still really sore and stiff and moving him is not easy.  He is a good patient until he has to be moved or take meds.  The other really tough part is pin site cleaning.  Its torture for him and it is really hard to hear him scream and beg you to stop.  :-( This is all really hard on all of us, but we know it will be worth it in the end. 

Thanks again for all your thoughts and prayers!!

Jake's Recovery

 

Jake had an 'okay' first day of recovery.  He asked to go home a lot and complained of pain on and off all day but with the proper pain management we were able to keep him as comfortable as possible. He is such a brave little boy and I am so proud of him. PT came in today and got him up and standing (with a lot of help) and seated in a wheelchair for a couple hours. There was a patient care nurse that came in and gave him a dinosaur, blanket, stuffed animal and stickers which cheered him up. He was in the PICU most of the day but was transferred to the pediatric unit around 6:00pm.  Please continue to pray for Jake's healing, comfort, rest and good spirits. Thanks!!

Surgery Day

Jake was in good spirits this morning!  He was cooperative and silly at times while we were in pre op. The team took him back around 9AM and prepped him for surgery.  Dr. Paley came out to the waiting room around 10:15 and let us know he was going in to start Jake's surgery.  We should be getting an update @ 12-1:00 ish. Thanks again for your continued prayer and support!! xoxo

12 pm- Update- Candice our patient advocate came out and said everything was going good!  Should get another update @ 2ish

3 pm update- still on hip may not have to do the knee surgery! 

7:30- Dr. Paley is done with the surgery. He is very happy with the outcome and said everything looks good.  He did not have to do the super knee surgery which is great news!!

9pm Still in post anesthesia recovery, sleeping.

10:00- Finally transferred to PICU and I got to see him.  He whispered.. "water and blankie" got to love this kid!  So happy for him to be out of surgery!!  Total surgery time 11 hrs.

We are here in West Palm Beach, Fl and settled in...

We are here in West Palm Beach, Fl and settled in our suite.  We have been hanging out at the beach and poolside for the last two days.  Jake had his pre op visit today.  He did so good!! They took blood and he didn't even flinch, We couldn't believe it!  We spoke with one of dr Paley's PA's today and he reviewed the plan with us.  The surgery is set for tomorrow 8/8 at 8AM and will be about 5 hours. When he is finished he will have an external fixator on from his hip to his tibia with several pin sites.  We really appreciate all the thoughts and prayers for Jake and all of us as we stay strong and trust God through this procedure and recovery.  Here are some pics of our trip so far.

Here is a news story of a little boy like Jake.

Rare surgery may give little boy a normal life

Jake's Journey

It was September 2007 when we found out we were going to be parents.  We were thrilled at the new adventure ahead of us.  Little did we know what God had in store for us.  During our routine 20 week anatomy ultrasound we were told that baby Petraske had a short right femur bone and that it would never "catch up" to the other femur.  They were not sure what else could be wrong and told me I would have to go see a high risk OB and get a level 2 ultrasound to check for other abnormalities.  Our hearts broke for our son, what would this mean for him?  Would he ever be able to walk? Would he need a wheel chair? Was it a bone disorder that affected other bones in his body?  Was it a genetic disorder? We had tons of questions and little answers.  We prayed and asked God for some guidance and comfort then turned our search to the Internet, where we found the PFFD website and Dr. Paley.  Its been a LONG journey since then.  Long story short, we had several MRI's and visits with Dr. Paley to determine his plan for fixing Jake's right hip, right knee and lengthening of his right femur bone.
Which brings us to August 2012.  We are going down to West Palm Beach, FL for 12 days to have Jake's "Super Hip 2" and "Super Knee" surgeries, which is basically a reconstruction and stabilization of his hip socket and knee.  We won't know completely if Dr. Paley can reconstruct and stabilize Jake's hip until he performs the surgery. Please keep Jake and Dr. Paley in your thoughts and prayers.
Jake will have a metal external fixator brace on his right leg from his hip to just bellow his knee for about 4 months.  If all goes well with the reconstruction and stabilization of Jake's hip and knee we will explore leg lengthening surgery in about 3 years.

We really appreciate all the thoughts and prayers from our family and friends. Charles and I will keep this blog updated with details of our journey and with Jake's progress through surgery and recovery.