The end of the journey...

Well at least the end of this first lengthening journey. JP had another follow up doctors appointment today and his X-rays showed that his leg and regenerated bone are healing nicely. So well that he will be having his fixator removed next Friday - May 22 (also Keith's and mine 11th wedding anniversary).

It's so hard to believe this thing is coming off! Some days it feels like we just got it on and others it feels like he was born with it on. It's a funny wave of emotions I'm having right now. 

Proud- I'm so proud that he has done so well with it. While it was defintley rough at times, I think for 3 he handled this well.

Joy- that my baby is on his way to having his legs a little closer to even. That we picked an amazing surgeon who has encouraged us all the way and celebrated each of our little victories with us.

Relief....no more altered clothes, no more worrying about pin site infections (we only had 1 yay!!), no more having to deal with stares and glances and to be frank explaining over and over what the ex fix is and why he has it on.

And disbelief... That we have survived his first lengthening! That his first lengthening is pretty much over! When I think about when we first learned about his birth defect and how overwhelming this all seemed or when we moved up this surgery and the stress and anxiety that I was feeling or the day and night to follow post surgery- this day seemed like a dream that would never come true. And now surgery and procedure #2 are "in the books"!

The last 4 months were anything but easy- there has been tears, frustrations, doubts, and struggles for all of us, but JP has shown resilience and strength. He has showed us that....well, he has got this!

So next week his "superman leg" will come off. He will go under and have outpatient surgery to remove the external fixator and wake up with a straight long leg cast (aka above his knee ). It will be interesting it see how he handles this next transition. JP has had a cast before, but he was 18 mos old and it was different surgery/experience (it was when he has his tibia straighten and his ankle reconstruction).

We have been talking to him and preparing him on what will happen when he wakes up, but I'm not sure he grasps it.

JP will be in a cast for two weeks and then we will go back for  X-rays and a check up. At that time he'll be molded for his new AFO (another foot on foot articulating one- woohoo!!) and then depending on how things look, he will go into an air cast or back into a hard cast for 2 more weeks / until his new orthotic is done. It looks like the AFO will have a 5cm difference to cover.

So here we are heading into the end....well of lengthening #1. He will still have lots of PT ahead, but we are finishing this part of the journey and should have a few years "off". So please keep our Superhero and his big brother in your thoughts and prayers as we tackle a new transition...our latest new normal.

From lengthening to consolidation

I can't believe how bad my lack of updating has been, I guess we have been busy. So where to start...

Well JP has just hit the two month mark for his ex-fix/ post surgery anniversary. He is doing well adjusting to the ex- fix, but we defintley had some bumps, frustration, and struggles for sure.  We have had a lot of sleepiness nights. And we have had a lot of tears(both JP and me).

He has struggled with keeping his knee and leg straight which is so important during the legthening process. His doctor has pulled out some tricks to assist him. The first one was a cast and extension of his ex-fix, which lasted a week. 

Then we moved on to wrapping his leg up in an immobilizer and that was the answer. 

PT and doctor appointments were a nightmare. He would scream through both if anyone came near his leg or touched it. Most of it was fear with a little pain sprinkled in.

But since the immobilizer- his leg has gotten stronger, he has been able to straighten it himself, PT & stretching have become easier, doctor appointments & X-Ray have become a piece of cake, and he started walking again...and without his walker! 

IWalking is such a big parent milestone, but we have gotten to experience the joy three times now.  He mainly walks with the immobilizer on which does help support him some, but he has taken 10-20 steps without it on in PT.

So it's defintley been a long month. But it's gotten better and as of yesterday, Jonathan is officially done the first phase of the process- lengthening. No more struts turns. All together JP has gained between 3.5-4 cm, which is just awesome!

 He is now on phase two- consolidation. Basically he is now at the point where he'll spend the next couple months letting his bone heal in the ex-fix. The doctor has been happy with his bone regeneration and healing so far. 

On Monday, Jonathan will have the bottom portion of his ex-fix removed, the foot plate. Basically it's a 15 min outpatient procedure where the doctor will remove the wires from his foot and ankle to "free" it. So he'll be able to start walking on his own foot again (and not lose range of motion)!

With the end of lengthening, it means JP should have less pain and  be closer to having his legs equal!

While this isn't the end of the road for Jonathan (for this procedure or journey),  it's an amazing start! We are so happy to see his leg be stronger and look longer! And whole it's been rough, he has amazed us and handles this situation fairly well for a 3 yr old.

And his older brother, Aiden...has been amazing too! He has been shuffled to grandparents and therapy appointments continuously. He has listened to his brother scream and yell, cried and be scared, and just be grumpy at times. Through it all, Aiden continues to be so supportive and loving. His school work and attitude hasn't changed one bit. We are so proud of him  and how wonderful a big brother he is!

A Superhero turns 3!

Jonathan's birthday was this past Monday and it's hard to believe he's already 3!

We had a long celebration for his big day. JP celebrated with his grandparents, aunts and uncles, and cousins this past weekend and he had a great time despite his moodiness. He also got a lot of favorite presents. This year was heavily Batman themed.

Then on his actual birthday, he had lots of mini celebrations- opening presents with a Mom & Dad before a Dad had to go to work.

And then a trip to the movies with his brother and Mom, as well as a few more presents.

Then another run of ice cream and cake (when a Daddy got home) before bed.

Jonathan very much enjoyed being the birthday boy and even more so all the presents. 

Both boys also had their yearly check up this week and are doing well and very healthy. Aiden comes in at 48lbs and 45 1/2 inches and JP is 31.1 lbs and 37 inches, both in the 25-50% range for their age. Aiden does need to get his vision checked as this is the second year in a row that he was borderline failing the test at the Pediatrician's office. I'm not surprised, I figured one of my boys would end up wearing glasses thanks to their genes. 

Jonathan defintley has had a wild ride in his short. I recently read my blogpost from when he was born and I could sense how scared, how naive and how unsure I was of what his life would be like.

The last 3 year has been anything but easy, but it has been so much fun with him too. He's so determined, so opinionated, so funny, so loving, and so full of life. Nothing like what was going on in my mind three years ago.

 I wish I could go back and tell myself- "it's not going to be easy, but it's going to be worth it."

Saving a Limb is...hard

For the last few years, I have been very positive about saving JP's leg. I have tried to boost the spirits of those in our support group that have been down.  I had some doubt during JPs first hospital stay, but once we got home, in his own environment, his attitude changed and I was back.

JP is almost 3 weeks post surgery and it has been 2 weeks since we started lengthening his leg. He's doing great handling his second major surgery and he's not even 3 yet. He still amazes me.

But this has been hard, harder then I thought. I figured second time around, we got this, but it's has been more of a struggle or maybe just different. JP is moving around well, but not walking yet. He's happy, but he has  pain, more pain then I anticipated. I also think he's scared. Scared because he's not sure what to think of the sensation the pins in his leg give,  scare to walk, and maybe scared of how it looks.

We have rough nights- JP hasn't  slept through the night since surgery. He's up in pain or he wakes up crying because he is uncomfortable. We are trying to help him by giving him valuium, Tylenol or pain meds, and raising his leg with a pillow. We have had some nights with  stretches of 6 hrs sleep (so Momma is happy those nights!), but it typically takes 30-45 mins to calm him down and get him back to sleep. Some nights I walk and paced the floor with him and feel helpless.

Last week, he had his 2nd post op appointment and his first strut change (struts are what they use to help lengthen the leg). He was doing great and even helping the doctors change it with his tools, but it was a bit hard to change the strut because of his leg being so small. There isn't much room to work with and a lot of tension built up and it "popped" which hurt him. He wasn't happy after that, bribing with food didn't even help. I felt helpless.

We started Physical Therapy this week-JP is slated to do "land" therapy 3-4 times a week, which we will do at the place he's been attending for the last 14 months called Theraplay.  He's slated for aqua once a week, but we are still waiting to get on the schedule. PT  is now more like torture then rehab. JP use to be so good, go back and play with the therapist and loved being there, but the last two days he has hated it and made me go back with him. 

They're are trying to get him up and walking via a walker. He did it once without even being asked to do so, but since then he won't, he refuses. He claims he can't walk. We have to bribe and force him to use the walker, but luckily today he was open to doing it the 3rd time we pushed.

They are also helping him stretch out his leg to help him keep  it straight and he hates it, in fact he screams bloody murder. He says it's painful and he acts like it hurts too. I'm concerned (well so our the PTs) because he wants to keep his leg bent which could cause so many other issues. We are to also do stretches at home, but yet he cries and resist us too. I try to push through, but I feel helpless.

Then there are times he surprises us... He pulls himself up and then let goes and stands on his own or he gets himself out of his bed and room somehow.

I have been struggling and this recovery process seems  different and harder then last time. I feel helpless because he seems to have more pain, more sadness then before. But we are a part of an amazing support group, who have people ahead of us in this journey, they have provided some great advice and suggestions because they have been there. I'm trying to keep my eye on the prize....a longer leg. A leg that in a few more months will be closer in length to his "good" leg.

So saving a limb is hard, but I hope in the end JP will appreciate it.

History repeating itself, Phase 2

So last Friday was JPs surgery to begin the lengthening part of this process. It is the operation were he received his "Superman leg". It was a surgery we pushed up a month and half and that we were excited and scared about all in one.

The surgery would be a short 4 hours, as oppose to the last time (a 6-7 hour surgery). This time, it seemed tompast fairly quickly for Keith and I. It was still so hard to hand him over for surgery, but I did well with minimal tears. There is something about watching your child on "happy juice" that makes it a bit easy because they are so funny. I actually forgot how loopy they get.

The surgery was very successful and the doctor was happy with how it went and the positioning of JPs ex-fix. Due to Jonathan's leg being on the smaller side, we now have a goal of 3-4 cm for lengthening, rather then the 5cm we thought. This is so we don't compromise his bone.

They say that you go on to have more kids because you forget the pain of labor and only remember the joy of having the child. I feel the same about JPs journey. I forgot how horrible it is to see your kid in pain. How useless you feel when you can't help take away the pain. JP doesn't come out of anesthesia well- he thrashes and screams and cries. We try everything to calm him down, but with little success.

This time was so rough because he could verbalize his pain. It broke my heart to hear him say, "take off my superman leg" and "Mommy it hurts, make it stop". Friday night into Saturday was very difficult and meant no sleep for JP, Keith or I. Jonathan was in pain and didn't understand why. He also hated all the tubes and wires. It nearly broke Keith and I (again) and  made us question (again).

Saturday came and it was a new day...a little bit better of a day.  Just like last time, JPs epidural came out. This time he decided to pulled it right out of his back. This meant we had to get ahead of his pain now with oral medication, but also had us freaking out that he paralyzed himself. The CRNA (anesthesiologist) came and reassured us (more then once) he was okay and that he didn't paralyze himself. After the epidural was out,  JP became more like himself. This time it seems we were better getting ahead of his pain and Saturday was a good night.

Sunday came and the "old" JP was back. He wanted to eat, he asked to get out of bed and sit in the chair, he wanted to play, and wanted to just get out of his room. His (very awesome) doctor came in and checked him out and said go home! So by Sunday night JP was in his own environment and sleeping in his own bed and that was all he needed (just like last time).

Since being home, JP had been doing well. He definitely has pain at times, but he has moments of being himself. He is also starting to play more and more instead of just sitting and watching tv. He even learned to maneuver around the house. It's like watching your kid go through all the infant milestones in a few days. First he sat up and was playing, then he was scooting around the house, then crawling, and recently he has been standing and cruising around furniture, which means in no time, he will be walking... I mean running again! 

Today, we had our first post-op appt and all looks great. We are now officially lengthening.  What that means is we start turning his struts. This is exciting and causing me anxiety all in one. He has 6 struts to be turned/moved  and they come with a schedule. Today was the first of 3 and I'm so nervous about if  I moved them to the right spot! 

We also start pin care, which means carefully cleaning the pin sites to (hopefully) keep infections away. For about the next two months, we will turn JPs struts and hope to gain length in his bone while keeping infection at bay. So please keep us in your thoughts and prayers as we strategically lengthening his leg and hope for minimal pain and pin site infections.

This surgery has so many similarities as his first, but also so many differences. But just like the last one, I know the joy we will feel when we see his leg being closer to even then it was before.

Here we go....again

 The hospital bags are packed and ready to go....3 years ago that would have meant, "Get this kid out of me I'm ready to deliver." This week it means we are ready for surgery...again.

Our little Superman goes back in for surgery this Friday. We begin round 2, the next phase, leg lengthening.

Going into surgery this time around is such an interesting wave of emotions. There is less anxious feelings, but at the same time anxiety.  I'm excited, scared, happy, and frightened all in one. 

Less anxious feelings because I know what to expect this time- well at least with handing my child over for surgery. I understand better the feelings I will have come surgery day and know it's okay and natural.

An excitement and happiness knowing my baby will start his journey to two even legs! While even after all that is said and done after this surgery/ recovery-JP's leg will have about a 2 cm difference, it will be the closes his legs have been to even in a long time!

But yet the sadness ...

Of having to hand your baby over for surgery. This still haunts me, but I'm coming to realize this part will never be easy. Also JP will be in an external fixator for 5 or so months- this is new territory for us and that's scary too.

Of going through his closet tonight and starting to packet his pants away. The pants that haven't been altered to work with his external fixator and will never wear again.

 

Of worrying about Aiden. Not just how this will effect him this time,  but keeping track of who will have him  and making sure he gets to school on time, has what he needs for school and so on.

Keith and I met with JPs doctor last week just to get a run down of things again. The surgery this time should only be 4 hrs, as oppose to the 7 or so last time. We also learned the actual lengthening process will be about 60 days/ 2 months. So while he'll be in an ex- fix for 5 mos, we will only have to turn pins for 2.... Yes that's a sigh if relieve you here from me.

So we are learning and adapting with every phase of this process, but still feeling confident about our decision in saving JPs leg. So please continue to keep us in your thoughts and prayers as we go through this next step. Pray for us to handle the rigorous  PT process (it'll be 5 times initially), for limited pin site infections, and for JP handling his "superman leg"!

We will be sure to keep you posted on how things are going.