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.

Christmas and a New Year

We hope everyone had a wonderful holiday season! We had a great Christmas and, as always, busy and chaotic one.

We (have always) spent Christmas Eve with Keith's family. We get together with his parents & brother, sister in law, and kids and then head to church. It's always so much fun when we are all together. Now with 5 grandkids and 4 of them being boys, it gets a bit crazy, but I love it!!

And it takes a long time to get a good pic of these 5- lol. I look at this and it makes me sad how quick these kiddos are growing up. My niece is almost 13- I still can recall the day she was born! 

When the kids open their gifts, it's my favorite time. I love seeing how happy and excited they ALL get!

We let the "cousin twins" open gifts at the same time, it's just easier that way! Then we made the older 3 due birth order- youngest to oldest.

And I love the chance to capture these 5 loves and their grandparents- Always special memories

After church we went and hung out with Keith's moms side of the family. We don't get to see them often, but this is a tradition long before I started dating Keith and it so nice. Keith's cousins are so sweet and  give the kids presents. This year we did another cousin photo, it is all the cousins' kids on his moms side. We did this about 5 years ago, when Aiden was 1, so it was cool to have an updated photo with some new spouses/ significant others. We were only missing one cousin/spouse!

Then Christmas Day came and I think this was my favorite one yet! Although tired, the kids totally were into it this year. It did only take all of 5 mins to open gifts, but the were so excited and JP kept saying, "oh this is awesome!" These are the memories I realize are fleeting, but will last forever. Now I know why people say you kids are only young once!

And this year, I got the most amazing gift! Aidens school does a Secret Santa workshop, so we sent him with money to buy for his parents, grandparents, and brother.  Well Aiden got me a ring and his reason was he wanted to "replace" the (wedding) rings I lost earlier this year. Yes that's Mommy's heart breaking you hear!! I had lost my wedding ring(s) in Sept and we can't find them anywhere, I've been upset about this and the fact my sweet 6 yr old understands how important this is to me is amazing!

We then rounded out Christmas Day by celebrating with my family, where the kids were showered with more gifts from my parents, sister and brother in law and then my aunt/uncle, cousins and their kids!

And I'm excited to announce, next year they'll have a new girl cousin on my side to celebrate with!! My sister and her husband are having a baby and found out two days before Christmas it's a girl!!

We are now preparing to head into the new year. While a new year is always exciting and refreshing, we know this year ahead will defintely have it's struggles. JP is scheduled for his next surgery on Jan 23rd. We will begin lengthening his leg. He will be in an external fixator for at least 5-6 mos and this will defintely be new territority for us.

We had a pre op appt Monday and both the doc & the PT at the hospital thinks it won't be long after surgery before JP will be back on his feet!

So as you go into the new year, please keep us in your thoughts and prayers as we embark on the latest journey for JP having two even legs. Please also pray as this will be an adjustment for Aiden too!  He will have to deal with seeing his brother in pain, needing more attention, and being away from Mom and Dad when we are in the hospital with JP.

We wish you all a very happy & healthy 2015!!