September- October 2014

We have really enjoyed being back home in NY since the end of August.  Jake has started 1st grade and we love being back in our home!!
Since we have returned Jake has had some issues with his fixator and his stomach.  He developed what we think is an ulcer from all the pain medication he was on throughout the summer and from the antibiotics.  He is taking meds for it and hopefully it resolves once the fixator comes off and all his medicines are discontinued.  Jake also had some pins become very loose in his tibia or the lower end of his external fixator.  He has been non-weight bearing since early October.  He has been using a walker to swing his right leg through with out stepping on it.

Jakes fixator is scheduled to be removed on 11/3, which can't come soon enough!!

Jake update 8/13

Jake had an appointment yesterday 8/12 and his bone is looking great!!  He has 72 mm of beautiful new bone growth. Dr. Paley's assistant said if everything continues to go well then we should be done in about two weeks.  So we scheduled our LAST Dr. Paley clinic appointment for 8/25... YAY!!!!!

Here is a screen shot of Jake's progress so far... Praise God!! Amazing right!

Thank you for all your prayers for Jake.  He tells us all the time that God is helping his bone grow and he says he feels better when people pray for him!  He still has to endure so much pain, discomfort and frustration with this process but he handles it like a champ.  He really is Super Jake!!

Here are some pictures of our August so far....

Charles caught a monster Cobia which made him very happy! 

Jake has been feeling great over the last week which has allowed him to enjoy swimming again.

Group pic at the South Florida Science Museum

Dad's birthday dinner at Panama Hattie's

These are two of the "main" physical therapists that Jake sees everyday and who have helped him tremendously through this whole process!

Mom and Jake after scheduling our last Paley office visit and starting the two week countdown to HOME!!

Please continue to keep Jake in you prayers, we found out that Jake has some more loose pins and he has a minor pin infection.  He is on antibiotics which are working great and the loose pins are not creating any additional pain at this time.  Please pray that the infection will not get any worse and that his loose pins will not cause increased pain.  Please also pray for his strength and determination these last few weeks and for God to grow his bone to our goal length of 8 cm.  Thank you!  Love, The Petraske Family. 

The Power of Prayer!

 For the last two days Jake could barely move without wincing in pain and he definitely couldn't walk because his hip was hurting him so bad… well through the power of prayer and Gods grace,  Dr. Paley was able to remove one pin from Jake's hip that was very loose, he also performed a peroneal nerve decompression which will help with his nerve pain in his leg and foot from the lengthening process. Jake is resting comfortably at home and was even able to walk around tonight and play with his brothers. 

  

 Jake is so happy to be feeling better and also to hear that so many friends and family are praying for him and thinking of him during this process! Thanks again for all the support... I really can't say thank you enough!

 Also today we received a new lower shoe lift!! Jake is thrilled to see all his progress!! 

Amazing right!!  What an awesome answer to prayer! Jake is currently has 51-53mm of new bone growth at this time.  Our next x-ray is on August 1st and he should be at 63mm which puts us at our goal length of 8cm by the end of August.  Please continue to pray that we have no complications and Jake gets the maximum growth with minimal muscle and nerve pain.  

With Love, 

The Petraske's

Jake Update 7/16

First the good news... Jake had an x-ray yesterday and we saw 51mm of new bone growth!!! 

Now the not so good news;

We found out today that Jake needs to go back in for surgery. He started to have increased pain last night and today in his hip area and was complaining about his pins hurting him (severe burning, bee-sting like pain).  Dr. Paley's physicians assistant, John saw that the pins in his hip (pelvis) and shin (tibia) are loose and need to be changed out.  This is a somewhat common complication that happens around this time in the lengthening process. Dr. Paley and his team will have to assess the condition of Jake’s fixator and pins and make adjustments as needed.  We are told that this is an outpatient procedure which means Jake will most likely be able to recover at home after the surgery and hopefully have only a small amount of additional pain from the procedure. 

Please keep Jake in your prayers, pray for Jake's comfort, for the surgery to be successful and for the medical staff and Dr. Dror Paley to have the wisdom to correct the issue and for  Jake to be in a lot less pain. 
Surgery is scheduled for this Friday 7/18

Thanks again for everyone's love and support for Jake during this time.  We appreciate all of the thoughts, prayers and the cards and donations!!  The pic above was taken after the boys opened a big box of toys that our neighborhood (The Estates of Halfmoon) sent us, Thanks so much for all the love!!! 

Jake Update

Hello from Florida!!  Hope everyone had a great 4th of July, as of today its been almost 8 weeks since surgery and we have been lengthening for almost 7 weeks or 46 days which is 46mm. 
We are more than halfway there!! 

We have had two more appointments since our last post. 
On June 16th we had our second post op visit we saw that Jakes lengthening is going well, we had 28mm of new bone growth ;-)

 



 

Also on June 16 Jake received his new shoe with a smaller shoe lift!!

 

 

Our third appointment was on July 1st, Jake has 41 mm of new bone growth!!

 

 

 

Our appointment was with one of  Dr. Paley's physicians assistant (PA) Servando, he assured us that Jakes new bone growth looks great and he is also happy with Jakes physical therapy progress.  He has an 85 degree knee bend and he is able to get to 0 degree extension, both important for the muscle and joint integrity as the bone and leg lengthen.

 

 

Some other highlights:

Jake lost his first tooth.. (and about 3 weeks later his second ;)

 

Luke turned 4!!!!!

 

 

 

 

 

Please continue to keep Jake in your prayers, he is having a lot of pain with his muscles and nerves in his right leg.  His knee stretches and pin cleanings are becoming much more difficult and it takes a lot out of him to deal with the intense pain. My heart breaks when he cries and asks us why this has to happen to him. :-(

He is my hero and so very brave and strong and I tell him that 10 times everyday.   Thank you so much for all of your support, prayers, concern and love! It means so much to our whole family to be surrounded by so much love and well wishes.  We are truly blessed!!

 

 





Jakes 1st follow up appointment

We will be having follow up appointments every two weeks with Dr. Paley or a member of his team.  The appointments consist of an x-ray, knee range of motion evaluation and an overall well check for Jake. 
At our first follow up visit we saw Dr. Kevin and Dr. Paley.  We were able to see for the first time Jakes 'progress' so far with lengthening.
 
 

 

The shaded area has new bone which will harden (consolidate) over 9 months.  This growth is from 12 days of pin turning which slowly separates the bone ¼ of a millimeter at a turn.  We turn the pin 4 times a day which equals 1mm a day and every 10 days equals a centimeter of bone separation ie. new bone growth.  This lengthening process has many moving parts and it has been a team effort to get this far,  between, PT appointments, Jakes medications and vitamins administration, heat application, muscle massage, muscle stimulation device application, pin cleaning, drying and wrapping, along with trying to entertain him (and his very active brothers) this is a full time job! All of our family and friends who have supported us along this journey has helped us tremendously! We really do feel your love, prayers and support and it helps!  We are 1/7^th of the way there, Praise God!  Please continue to pray for Jakes pain management, his strength and his determination. 

With love,  Jake and Family 

Week 2 & Jake and Evan's Birthday's

It's been a little over two weeks since Jakes lengthening surgery.  We are turning jakes fixator everyday and lengthening since tuesday 5/20 at a rate of 1mm per day, we have also been going to physical therapy 5 days a week. Jake loves his therapists and he is getting stronger everyday. We had a great week and Jake is doing well. Some days are better than others.. lately he has been having a lot of muscle aches and spasms and his stretches are getting harder!  Jake has to do a number of different knee stretches and leg lifts with the physical therapist everyday including a challenging knee flexion stretch three times a day (we usually do this stretch on his belly so we call it the belly stretch and it is very unpopular) and they are VERY hard for him, the goal is to get close to a 90 degree knee bend with each stretch.. Every time we lengthen his leg by turning the screw on his fixator his muscles get tighter and tighter and we need to stretch the muscles to maintain joint and muscle health and mobility.  He is such a trooper though and so very strong!!

We celebrated Jakes 6th birthday on Wednesday with our friends Kristen and Shawn Hafner and Jakes friend Brennan.  Jake got lots of presents and had a great time! We also celebrated Evens 2nd birthday today!!  Can't believe my baby is 2!!! :-0

Thanks again to all our amazing family and friends for your outpouring of love, prayers and support during this challenging time. Keep Jake in your prayers for his strength and comfort and determination.  God is good and he answers prayer ;)

We have an x ray and Physician Assistant post op appointment on Monday 6/2