Getting around on the other side

Well, we're now almost two weeks post surgery and things are starting to move in the right direction and look better.

The first week home was rough- I have equated it to having a newborn all over again. When JP cried, we had to figure out what was wrong. Was it pain? Was it just being uncomfortable in the cast? Was it just the stress of everything?

He didn't want to eat anything besides bananas, applesauce, or yogurt, but we felt we had to get more nutrition in him. He still doesn't have his full appetite back, but he's back to drinking milk and eating other food now.

When we came home from the hospital, we had to manage JPs medication and get his pain under control. I was wishing we could bring a nurse home with us to help; just like most new parents feel when they leave the hospital with their baby. He came home taking a Valium (a muscle relaxer to control his spasms) and a Lortab (a pain killer - codeine and tylenol) every 4 hours. By mid week, we spaced it out to every 6 hrs and by Saturday we had him weaned off both and were just giving him Tylenol.  He's now med free, with giving him tylenol as needed for pain (which I'm never sure if it's pain, tiredness, or moodiness)

The other adjustment was going back to the land of sleep deprivation. After having my sleep back for the last year this has been REALLY rough! We initially had to wake him up to give him the medication, but towards the end of last week and into this week he's now just waking up at all hours of the night and staying awake for 2 to 4 hours. He's fighting sleep or struggling to get comfortable; I just don't know. What we do believe is that it's not pain related. He tends to whine or cry and as soon as we come in to the room he is as happy as can be to see us and wants to talk or play. So we're still trying to jump over this hurdle and find ourselves praying each night that this be the night he sleeps through the night again.

Now that we're in the second week JP has become himself again. He's goofy, he's playing, and fighting with his big brother. I'm happy to have my baby back! He's seems to have adjusted to the cast well! JP is crawling - and fast - to get around. He's pulling himself up and trying to figure out how to walk.

Last Friday, JP had to endure another cast change. His cast was slipping (probably because the swelling had gone down in his leg) and we could no longer see his cute little toes. We had to get it corrected quickly because with his cast slipping it is pulling on the pins coming out of the bottom of his foot which actually pulls the pins keeping his "broken" tibia bone together to heal.  

It was a quick procedure, but a bit anxiety ridden for this Momma as well. He was sedated, but still aware of what was going on and he wasn't happy about it.  We were able to "assist" in the changing of his cast so we got to see his "new" leg! Again the vision was fleeting, but I remember being overjoyed to see his little foot right under his leg. Only one word could explain it ~~~AMAZING! Seeing how straight his leg is now was a little hard to envision with all the action going on in the room. I had to hold down his good leg so that they could get some quick X-rays and recast it. His leg still was pretty swollen too, but only 6 more weeks till I can stare at it everyday!

Many people recently have complimented and commented on this blog. I started this blog when Aiden was born to keep family and friends out of the area up to date, but over the last two years it has turned into my emotional outlet and therapy sessions, too. It has allowed me to go through all the emotions I need to have to handle and deal with JP's Fibular Hemamelia diagnosis and journey.

I'm happy that we are able to keep our amazing support network posted on how we're doing and that you all enjoy hearing not only about our struggles, our joys as well! (And a special thanks to my hubby for being the editor of the blog :)) We have been so overwhelmed with all the love, prayers, well wishes, and generosity that we have experienced in the months leading up to this important event in JPs life! And from the bottom of our hearts - Thank you and we love you!

  I also must note that I'm so proud of my big boy, Aiden! He has done so well dealing with us needing to give JP some extra love and attention! He has also has given him some extra love at times.

August 9th: a day to go down in history....for the Giosa's

It was a typical Friday- August 9th; a warm (albeit not hot) summer day, but for us it wasn't so typical. We woke up at 5:30AM; an hour or so before Alison would go to work. With one kid in their bed; not two, like usual. This day would be anything but usual for our family.

Today was the day that Keith and I spent 22 months of researching about; 22 months of looking for answers, becoming advocates, being cheerleaders, networking, and planning for this exact moment: The moment when JP would have surgery. We couldn't believe it was finally here and it became a bitter-sweet day.

We got to DuPont (a children's hospital) around 6:30AM where they brought us back to the pre-op room. The pre-op experience was so overwhelming; well, maybe just for Mommy. We met fabulous nurses who helped us through the preparations for JP's surgery and his surgeon/doctor came out to see us and talk us through what will happen one last time. 

It really was a bitter-sweet day. All the RNs and (of course) JP's doctor were great and understood our emotions were running high, but for this Mommy and Daddy, it was strange. For as happy as we were happy the day was finally here for us to start "correcting" JPs birth defect, it was still so painful. JP did great. He did everything they needed and never fussed or complained. Daddy was strong and listened to everything that the RNs and Doctor said to us. Mommy, though, had a harder time. She cried at almost every conversation. Mommy thought she was so strong, but when it was time for her to hand over her baby for surgery she felt like she couldn't do it. It had nothing to do with what was about to be done; nothing towards the Doctor or nursing staff, but just the fact that she couldn't part with her baby for 6 hrs or so and know that when she saw him again there would be such pain. In fact, she felt shame - this women who speaks about FH and all the possibilities fell apart when it was time for her.

It was a long 6 hours being away from our sweet baby boy, but it went well and I was able to compose myself thanks to my amazing husband. He reminded me that this was the right decision and best decision for JP.  Once the surgery was over, JPs amazing doctor (and our hero) came out to talk to us about how it went. JP had undergone 11 procedures that day (maybe the most in one day or at least that Friday). The Dr. also showed us pictures of before and after and it was so cool to see JPs new leg! Although the vision was fleeting for us (we can't really picture it anymore), we know it was amazing to see and can't wait for it to be our new "normal".

After surgery, we got to be with Jonathan in post-op. He wasn't doing great. He would sleep and then freak out for a while; he was having muscle spasms, which is common with his procedure. Once they gave him some medication to help (valium) with it, he was resting comfortably again.

The first night he did great. He slept well barely waking for his meds and never making a sound. Unfortunately what he did do was roll over and break the line for his epidural while sleeping which meant they had to take it out and begin oral medication for pain.  By early Sat morning, things had changed for the worse. JP had uncontrollable "freak outs" where there was no way we could comfort him. It was so hard and many tears where shed by him and Mommy. It got to a point where I questioned our decision. Was Lengthening the right choice for us? For him? Could JP handle it or should have we just amputated? Needless to say, Saturday was a very hard day for us; to watch your baby in pain and have no way to comfort him was just awful. 

Later that night, we decided maybe it was time for JP to get out of the room and maybe it would help him to relax. So, we got a wagon and we walked the halls of DuPont. JP turned into himself again; starting to say hi to everyone we passed, enamored to see different scenes, and just relaxing - finally.

We soon realized JP hated to be in the hospital room anymore. In fact, he would only sleep in the wagon after we walked him around the halls. He just would not sleep in the hospital crib!  So, Saturday night, Mommy and Daddy spent a lot of time walking the halls and finally getting JP to sleep.

Saturday night was rough, but only for the fact that every time he needed meds or his vital checks he would wake up and it would take a while to go to sleep which usually was walking him again through the halls in the wagon or sleeping on Mommy.

Sunday came and JP was like a new kid. We walked around a bit, played in the lounge, and had a nice visit with his big brother and grandparents. The old JP was slowly coming back and we realized we had made the right decision for our family. We also realized he just wanted to be at home in his own comfortable place.

A little later that day we got the okay to go home. It was a bit of relief for all of us! Although I was scared about going home without a nurse to assist us, I knew my baby would sleep and relax better and that was exactly the case!  He went to bed on time, slept through the night and wasn't happy when we woke him up for his meds. A totally different experience then the hospital.

Monday was a little harder for us. JP had moments of unhappiness and we were still trying to figure out exactly what it was, but we also had moments of "our" JP. He is on the road to recovery and while it won't be easy, he's already figured out how to get around to do what he wants to do!

So overwhelmed it's time to get over yourself

So recently (as I have kinda of mentioned) I have been on an emotional roller coaster with the days leading up to JPs surgery. I have also been (back to) feeling sorry for myself...and our family- like "why us"/"why our kid".  Totally selfish right? I couldn't agree more, but I think when you have a child that isn't "normal", I think this is a recurring thought.

No parent wants their child to feel pain or hurt and you would do anything to stop that. So when you have a child who will suffer, struggle, & hurt, it's so hard to handle. Whether this child's "pain" is from not being able to communicate to you effectively or surgery or anything in between- no parent with a child with disability wants this and I'm sure struggles from time to time and feels sorry for them self.

Well I have a lot of "ah ha" moments, a lot of wake up moments, and a lot of "get over yourself" moments recently. Today has been a day of overwhelming joy. It started with going into work and having my amazing co-workers make meals for us and a care package for us so while handling JPs recovery we don't have to worry about much. It's was hard for me not to cry and I can't even begin to express to them how much we greatly appreciate it! It just amazes me and and everyone in the house has had a moment of happiness. I think I have the best co-workers in the world!

And then to top it all off...JP walked today. (Okay I know no big deal, he's been walking for a couple months), but he WALKED barefoot, without his AFO and lift.  To some this is exciting, but to us this is just the most amazing thing ever and a very PROUD moment! We went from parents that weren't sure if our kid would walk initially (we were a bit naive), to our kid could walk with an AFO/lift...to a little "spitfire" who can walk LOTS of steps barefoot.

So for me- today is overwhelming....overwhelming about how amazing kids with FH are...how amazing  people are and what they will do for you in hard times...and amazing how your support group is huge!

A friend of my said to me tonight that "certain people are "chosen" by a higher power to take on hardships for a reason. " I don't know if initially I would agree with her, but when I think about it now, I know a few people that have struggles of one kind or another and taking it all in stride and I believe they are chosen because of the amazing support network they have. I know that's our case.

I can't thank EVERYONE enough for all their love, positive thoughts, prayers, and well wishes. You guys are amazing!

A day for Aiden

Today we took Aiden to Dutch Wonderland. The point of the day was to make this a day for Aiden. A day for him to have fun and do whatever he liked. We have taken him the past two summers and he really enjoyed it, but today was a day to let loose and make sure Aiden knows how important he is in this family. Aiden was very excited to be going to a place where he could "drive" cars and had a monorail.

The day went very well, he enjoyed almost every ride and had a big smile on his face. I was so happy that he enjoyed the day and was glad to see his smile because I wanted this day to be focused on him, and when we ask him tonight about his day, he said it was great. I would say success!

And I must note, even JP had fun....enjoyed everything, except the wait in line (which was for every ride) and the Merry Go Round....such an strange kid.

1 week and counting, but who cares when you have an awesome worker twin

Well we have made it down to the one week before JPs surgery mark. I have a lot of emotions going on in my head and I feel like I'm on some kind of wild emotional ride. At times I can't think of the surgery or talk about it without tears. I can't believe it's finally here... after almost two years of research, consulting doctors, networking with other FH families and now our turn to start the journey. That really is  what this surgery will start, JPs journey. Although this might be the first surgery it's definitely not the last and as I mention before its the beginning of giving JP a "normal" leg. Okay so normal might be defined a little different for us now, but its his turn to run, jump, and do all the things kids (especially boys) do to drive us parents crazy.

This past week I had to travel to upstate NY for work. While I hate leaving my family for a few days, I love the opportunity to hang out with my coworkers up there and they always make sure I feel like part of the group.

While up there I got the opportunity to have lunch with an old co-worker (as well as a current one). Her and I were pregnant at the same time, in fact we were both pregnant with our second son and our due dates were a week apart. It was nice to have someone to commiserate with about the pains/annoyance of pregnancy (yes many of my teammates had kids and been pregnant before, but lets be honest we all forget till we're back there- lol).  I felt like it was how her and I formed our relationship.  Our babies ended up being 3 days apart and we like to refer to them as worker twins.

She didn't return from maternity leave, in fact she moved. We have kept up with each other and watched our boys grow by the beauty of Facebook. She's has also followed JPs situation by reading this blog and Miles of JP. 

Well when we met up for lunch, she gave me a gift- it was an awesome hospital bag for JP AND filled with lots of goodies (toys, books, and stuff animals). I am overwhelmed by her sweetness and generosity, in fact it still brings tears to my eyes.

One of Jonathan's favorite items was his stuffed Curious George Monkey. He's been walking around the house with it since I returned home- hugging it and saying "Monkey". I think we have found our comfort toy to bring to the hospital.

 My ex co-worker's generosity and all the thoughts and well wishes I received from my NY co-workers this week reminded me that there are so many people "routing" for JP and it reminds me of the amazing support network we have.

I know this week is going to be hard for me and I know next Friday my wave of emotions will be more intense...feeling tears of sadness when I hand my baby over to the trusted medical staff & his doctor...tears of fear and anger as we await word on how everything went and question why Jonathan has to go thru this...and tears of joy. The tears of joy might not be immediate, but I know when that leg is "revealed" to us after 6 weeks in cast, it will be overwhelming happiness and something we will continue to have as we move along this journey and know this is the RIGHT decision for our JP.