Sunday, May 31, 2009

4 mm

We're slowly growing over here. Things are going okay. The turnings are not going as smooth and pain-free as we were hoping they would be. Jack has some pain and discomfort in the back of his upper leg while we’re doing the actual turning. It’s ending up to be quite the ordeal every morning, which we are all disapointed about. He’s definitely had a bit of a set back in how he’s feeling since we’ve started doing the lengthening. I think that makes sense, it’s got to take quite the toll on his body each day. He’s complaining a bit more about pain, but we’re trying to keep him off of the pain medication. It zaps his appetite, and he’s barely eating anything. I think right now we all feel a little bummed but we’re hopeful that his body just needs to adjust to this process and things will improve. He is enjoying the thought that his leg is growing. He sticks his fingers between the growing space between the rods and you can tell he’s thrilled about that!

We’re hoping to get him started in some massage therapy this week. I really think the sitting all day is tightening up his whole body. A good massage should help with that. He tells me he wants to do it, but I have a feeling he’ll spend the entire time giggling! Tomorrow we start physical therapy. He’s been with this therapist for a while, so I’m hoping things go smoothly. I think it’s going to help so much with some of his pain.

So, that’s where things are for us today. This entire process is a roller coaster, we are learning. I have a feeling these months will be filled with really good days and really bad days. Let’s just hope the good outnumber the bad!

Friday, May 29, 2009

Growing bone

Yesterday we went in to see Dr. Kogan. Jack had xrays done and they were fascinating to see! I wish I had brought my camera to take a picture of them to share. You could see where both bones were broken and where the pins and rods are attached. We all thought it was very cool, including Jack who seems completely unfazed talking about the saws used to cut his bones and how the pins were drilled in there.

We learned how to turn the fixator. Basically, there is 6 rods and we turn each one until it clicks. There is ruler markings on each rod, so we can see it growing the 1 mm each day. Pretty easy, even Jack did one of them. She gave us this printout of a shows each day what the ruler reading should be after the turnings. We decided I would do the turnings each morning after I shower Jack and clean up around the fixator. Jon isn't happy about this...he says I'm stealing all the glory :) We're going to try to make a video of how to do it and show that it's painless (Jack says it feels weird, but doesn't hurt).

I've gotten a lot of questions about the fixator getting wet. He can shower with it on. We have to use Dial antibacterial soap and basically soap up above the fixator and let the soap run down his leg. It's fairly easy, but I have to say Dial soap does not give him the sweet little boy smell that his Wild Berry Suave body wash does. After showering, I usually inspect around all the pin sites to see if there's any gunk that's built up (gross, I know!) If there is, I clean it up with sterile q-tips. He can't take a bath, but he can swim in a chlorinated swimming pool. He starts pool therapy soon, which I am so excited for. I'm also debating putting him in swim lessons, it is a huge hassle to drag all 3 kids to the YMCA. But, it's really the only exercise he can do and he loves swimming. They offer private lessons, which obviously he would need. I'm going to see how the first pool therapy session goes and then decide.

We really got quite the looks yesterday in the hospital. It's amazing how nice people are to you when they see you've got a kid in a wheelchair. We got a lot of questions of "how did he break his leg?" I am torn on how to answer this....part of me wants to really educate people on what we're doing and about his congenital defect. The other part of me thinks it's A LOT of effort to explain over and over what's going on. Jon and I were trying to come up with funny responses. My favorite was "it's a skydiving accident." Jack didn't find that funny.

We ended the day at Rainforest Cafe for lunch. I really really really do not like Rainforest Cafe. But, it was Jack's choice and Jon said he had one more day of getting anything he wanted so that's where we went. :)

Wednesday, May 27, 2009


Whew, today is over. What a crazy day, but now all the kiddos are tucked into bed…so all seems right in the world again. :)

This morning was wonderful. We had friends stop by this morning with lunch, dinner, balloons and presents. What more could we ask for??? They even spent time playing with my kids, which right now is the biggest blessing I can get! One can only play so much Uno, and I’ve had my fill. So thank you Debra for keeping Jack entertained for an hour and Michelle, the food was delish!

Oh, and then this showed up on my doorstep.

I think it went over well.

Each of the 3 kids had their name on one cookie. The boys asked me which cookie was mine since my name wasn’t on any of the cookies. I told them the rest of them were for me. Jack looked at me, serious as can be, and says, “I think you need to call the person that sent them to make sure. That just doesn’t seem right.” So, Kent and Kris, if he asks…I called you, right? And the rest are all mine, right? :)

Amelia has started crawling, which to be honest I could do without. It’s cute and all, but I’ve got a 6 year old learning how to drive a wheelchair. He ran over her today. Twice. And it hurt. A lot. She cried. A lot. He was upset because he really loves his sister. A lot. She was rather crabby today anyway, on account of she’s getting over the stomach bug and popping out 2 teeth. She was a real peach all day, but tonight we finally figured out that she’s happiest naked playing with matchbox cars (a future Danika Patrick perhaps?) So, I went with it and we ended the evening on a nice note.

Jack complained about some pain today above his knee. I think it's from not being stretched out in almost 2 weeks. I did my best to do some stretching and he loved that. He asked me if I used to be a PT. When I told him I hadn't, he said, "Really? Well, you should think about it because you are good."

Oh, and I find it very amusing that I overheard my boys discussing Jon and Kate this morning over breakfast. (I'm referring to Jon and Kate plus 8, in case you are living under a rock and don't know who Jon and Kate are.) Based on what I overheard, I'm pretty certain that the boys are on "Team Jon".

I’ve gotten a request for pictures, so here you go! This is Jack’s view:

Here he is with a few of his lego masterpieces:

Jon and Jack, using this fixator as an excuse to play video games for hours.

The volcano launch. The blanket was there to provide warmth, not protection.

Amelia…don’t be fooled by the bow and the sweet smile…she is a beast. I also realize there is snot all over her face, I’m fighting a losing battle with that this week.

And a final picture of Max. No reason for posting this picture other than to annoy my father who’s first thought is going to be “can’t they PLEASE cut that kid’s hair?” :)

Tomorrow is the day we head to see Dr. Kogan. I’m hoping Jon is home in time from work today to go with us tomorrow morning!

Monday, May 25, 2009

First Hurdle Cleared

If someone would have told me a week ago that we would be where we are at today, I would have never believed them! I can say that Jack has recovered. He is down to 1 pain medication twice a day and that seems to be managing any pain he has. His attitude is back to being very positive. He's entertaining us with his never-ending commentary on life in a wheelchair. "I'd love to help you out mom, but in case you haven't noticed, I'm in this wheelchair." He's immersed himself in legos (thank you to all who have sent legos!!!) and art projects. We all relaxed a bit and had a great weekend. Jon's parents came down Sunday and gave Jon and I a break for a couple hours. It was nice to get away and we went all crazy and went to Lowe's and Sam's Club. So, a big thank you to them for coming to visit!

Tomorrow Jon goes back to work. I know he’s sad to be leaving us, but I am confident that we will all be fine! He’s an amazing father and husband, and he took care of ALL of us through the worst of the days. But, it’s time for life to go back to normal… get to work Jon!

I truly believe that there will be many blessings that will come out of this process. One thing we have learned these past 10 days is that we are truly loved by so many people! To all of you that called, texted, emailed, followed our blog, made meals, sent cards, gifts, prayers…words can not express how thankful we are. We have had people reach out to us from the east coast to the west coast…from Canada to Florida! It is absolutely overwhelming, but what a blessing to come out of all of this. People we haven’t talked to in years and years and years have tracked us down to offer support. So thank you thank you thank you to all of you! To my family, you guys are the best. You have rallied around Jack and took care of all of us during all the rough times. I don’t know how we could do it without you, and I know that Jack wouldn’t be half the kid he is if it weren’t for you.

Our next step is to start the lengthenings. We see Dr. Kogan on Thursday and she’ll walk us through how to do it. I know Jack well enough to say that after Thursday he will happily educate anyone on an Ilizarov fixator and give a complete demonstration on how to do the actual lengthening. We will turn the fixator 1 mm a day. We’re hoping to lengthen 5 cm, so if everything goes perfectly it’ll take 50 days for the lengthening. And the good thing about the lengthenings is that they should be pain-free. During that time, he is non-weight bearing. He can swim in chlorinated water and will be in physical therapy at least twice a week and have weekly doctor's appointments for xrays to watch the bone grow. It’ll be an adventure…that I am sure of!

So…..for now, we’re taking it day by day. I will keep updating our blog very regularly. It’s a great way to keep everyone informed and it’s been very therapeutic for me to organize my thoughts each night. We originally started this blog to put our story out there….in hopes that there’s a family in the position that we were in 6 years ago that can find our blog and gets answers and reassurance. We’ve never let Jack be defined by his medical limitations and it was hard during that week to have them so “in our face.” It’s nice to have that past us and have our “Just Jack” back, good as new.

Saturday, May 23, 2009


Things that were said in my house today:

1. "Jack, do not run over your brother with your wheelchair."

2. "Max, you have to do everything I tell you to because I just had surgery. A really big surgery."

3. "UNO!"

Things are going well. Our biggest challenges now are that our house is definitely NOT wheel-chair accessible and how to keep him entertained in that wheelchair for the next 2 months.

I am so NOT complaining that these are our challenges. We're loving having things back to normal...a new normal, but normal nonetheless.

Friday, May 22, 2009

One week post-op

One week down and things are going GREAT! We have drastically reduced the amount of pain medication he was on and taken him off of the Valium completely and he is doing AMAZING. I think he can handle a bit of pain/discomfort SO much more than he could handle the side effects of the medications. It is such a relief to see the old, upbeat, funny Jack back! It's like someone flipped a switch. The poor guy...that medication was messing with him!

Yesterday was busy. We hung out in the clubhouse of the swingset making and painting our volcano. And legoes. Lots and lots of legoes. He fell asleep doing legoes and woke up wanting to finish them! Good sign!

We got to participate in a chat last night with a limb lengthening specialist from Baltimore. His clinic does a huge amount of the lengthenings done in the US each year. Anyway, it was neat to read get his opinion on lengthenings and how they should be done. The biggest thing I took away from it is we need to up his vitamin supplements. He already is on Calcium and Vitamin D, but we need to up his dosage a bit. The doctor also recommended during the lengthening portion of this process to keep the leg elevated as much as possible. So it was nice to learn a few things...even if it was at 11 pm!

We talked to Dr. Kogan yesterday. She loves Jack, Jon overheard her telling the anesthesiologist in the OR that he was her favorite patient (how could he NOT be???) She's great, she's given us her phone number with strict intstructions to call her directly whenever...don't bother dealing with the residents. Which, of course, is awesome...but the comment about the residents made us laugh. Anyway, we feel so fortunate to have her. In fact, she just called to check up on Jack and see how he's doing.

Obviously we are just thrilled with his progress. What a difference a few days makes. We could not be prouder of our little man!

For those that asked...Jon was shopping for home decor, not balloons and streamers! Jack told him yesterday he's turning into a woman! He's gone to Bed, Bath, and Beyond twice by himself!!!! And yesterday, he even hit the craft store and the greenhouse. I think he's been taking some of that medication, he's acting awfully loopy :)

Thursday, May 21, 2009

Adding pictures

Good night last night. His attitude seems to be MUCH better this morning. I'm doing a happy dance...he's been trash talking during Mario Kart and planning his volcano eruption. We are definitely feeling good today! I'm adding pictures throughout the blog, so if you're interested scroll down through all the old posts.

Signs of the old Jack coming back.

This showed up in our backyard yesterday. We're hoping he's good enough to get on the swing soon, until then he enjoys hanging out in the clubhouse.

This picture is priceless...the first genuine smile we'd seen in days.

Don't be fooled by the enthusiastic look on his face, he was not thrilled that we were making him do this:

And THIS is what we're dealing with folks. It isn't pretty, but we're hoping to be looking at it for the next 5 months!

Wednesday, May 20, 2009

Another day down

It is so nice to be home, but quite a bit busier! Jack had a great night last night, he slept for 10 hours. I had to wake him up every 2 hours for his medicine, but he fell back to sleep quickly.

We are still battling that back pain. He complains of it constantly, so we know it's hurting and frustrating him. He can't get comfortable in a position to relieve the pain. It's so frustrating for us, he rarely complains about pain in the's the back pain. Jon pointed out that Jack seems to have a tolerance for the leg pain, he expects it to hurt. But the back pain is unexpected and so frustrating. We're hoping it gets better quickly. It has to, right???

We've decreased his pain medication today. He threw up every time we gave him the Valium, so we decided it wasn't worth it and stopped giving it to him. Funny story, that I'm not laughing about today, but someday I will....We put Jack in the wheelchair and he and Max were in the deck sitting and playing legoes. Amelia was scooting/her-version-of-crawling on the deck. Jon gave Jack his Valium and he projectile (and I mean projectile) vomited all over Max. Max starts screaming "I don't want puke on me", Jack is screaming because it hurts his back to throw up, and Amelia starts crawling in the puke. It was unbelievable. Ok, actually I can laugh about it now.

We're still working on lifting his spirits up. This has been the hardest thing for me to watch. I just did not expect this from Jack. He is such a vibrant, happy-go-lucky kid and to see him in this almost-depressed state is just heart-breaking. We have got to get this back pain taken care of and then he can be up in the wheelchair and we can do more. Jon is taking Max to his last day of school party tomorrow and Jack and I have plans to build a volcano. I'm praying he can sit up long enough to do it (and stay awake!)

Jon and I each took a little break today and got away for a while. Jon went to the store for pillows to pad up the wheelchair and came home with stuff to decorate the house with. Those of you that know Jon will find that very funny! He did a good job, I may be putting him in charge of decorating the rest of the house. It's hard to believe that we moved from NC and closed on this house one year ago tomorrow!

This is a crazy roller coaster of ups and downs. I keep telling myself he's improving everyday, slowly improving, but it is getting better. I've taken pictures along the way. I need to find the time to download them and post them to this site.

We're hanging in there. I've got strict instructions to get some watercolor crayons that we used in the hospital, so I'm off to do a little online shopping. Retail every time :)

Tuesday, May 19, 2009

We. Are. Home.

It feels really good to say we are home!!!

After a rough night and a difficult morning PT session, I got to the hospital with Jack's favorite person ever...his baby sister. His spirits were immediately lifted and he was pretty pleasant the rest of the day. He tried to put up a fight during his afternoon PT session, but I didn't give him a choice. He walked across the room a few times and then we were free to go home.

To celebrate...a chocolate covered strawberry. I swear this was his idea.

Jon took care of some of the discharge work and I packed up the room. We had a visitor from Jack did a piece of art that will be included in a mural in an exhibit in June. We all throught that was very neat.

He likes the concept of the wheelchair, but we need to do some modifying to it to make it comfortable for him. He loves trying to push it himself, which is really interesting seeing as he's pretty loopy and unsteady from the pain meds. His back is really sore right now from the epidural and we're hoping that gets better soon and he'll be feeling much more comfortable. We're still working on keeping him calm and for the shrieking to stop. Please God, stop the shrieking. I know with time, he'll get more comforable with the fixator and the anxiety will diminish. Anytime now would be great. Jon and I are totally over that screaming!

On a funny note...he did tell me he was going to run over people at the mall in his wheelchair. When they look mad at him, he's going to tell them, "Come on...look at me...I had surgery, look at this thing on my leg." That made me laugh...typical Jack!
If this picture doesn't belong on a Wheaties box, I don't know what does.....

Monday, May 18, 2009

Monday update

I'm updating this from home, unfortunately Jon and Jack aren't with us. I came home tonight to get the 2 little ones home in their own beds. Max has preschool tomorrow and then is headed to a friend's house. Amelia and I are heading back to the hospital in the morning. Hopefully, we'll be bringing Jon and Jack home with us. If not, Jon and Mia will be coming home tomorrow night and I'll stay with Jack.

What a roller coaster this is. Pain management-wise we are doing okay. He's definitely in pain, but for the most part it's tolerable. Our biggest hurdle right now is emotionally the kid is just spent. Literally, he just can not settle down. I think he's hurting, exhausted, scared, and so drugged it's confusing. The moment someone opens the door to the room, he just starts shrieking....uncontrollably. He doesn't want anyone near him, I don't blame him at all. We wanted to get him up in a wheelchair today and to take a shower. Neither happened. He was not going to cooperate so we all decided it wasn't worth it. We did get him in a recliner sitting on my lap. He screamed the entire time we were doing it, but finally relaxed and slept on me for a couple of hours.

The child life specialists have done their best to try to help us out. They sent a therapy dog and a therapy rabbit...neither of which impressed Jack much. He did get a wooden model care to assemble and paint. He had fun putting the glue on for Jon and tried his best to paint a "rainbow car". His pain medication is so strong, he is having troubles focusing visually on things. Coloring, video games, reading....all of this favorite things and right now he can't do them.

Obviously, this has thrown us off. Jack is such an easy going kid, we never expected him to react this way. It's totally understandable, we are just unprepared for how to handle it. I'm hoping that once he's home he can relax.

I talked to his surgeon, Dr. Kogan today. I saw her in the hallway and burst into tears. She was so reassuring and told me that everything from the pain to his behavior was totally normal. She said this is one of the most painful processes for someone to endure. She said when she rounds on her teenaged patients after the surgery, they scream at her and tell her to cut their leg off. Within 2 weeks, they're almost back to themselves...within a month, they're good as new. She promised me that the kids always bounce back from this and recover, however, most parents are left scarred. She told me that once he's weight-bearing (~6 weeks from now) we need to celebrate....and celebrate BIG. We're planning a trip to Disney in November, but I'm starting to think we may be planning to go sooner. Like in 6 weeks and 1 day from now :)

On the upside

Good night last night. We got Jack laying on his side and I crawled into bed with him. What a difference it makes to have mommy by your side all night. Instead of waking up screaming, it was a calm, "mommy, I need something." It felt so good to hold him all night, I swear I was trying to heal his little body with love.

The pain is well-managed now. This is not to say there is no pain....he gets severe cramps and sharp pains in the pin sites where the skin is stretching. HOwever, he is comfortable most of the time and we are able to settle him down with breathing and distracting.

The epidural is coming out today! I can't wait to lose the tape on his back. It sounds silly, but that tape is one of the worst things right now. It is driving him hurts when it pulls his skin, it's hot, and sticky. Once the epidural is out, we can take out the catheter and I think he'll feel so much better.

That's the plan for today. We saw his surgeon today and she said everything that is happening is 100% normal....that's what we want to hear. She wants him to take a shower today, which will be interesting...but he'll feel so much better afterwards. And, we're scheduled to do PT in the therapy room so we get to get out of bed and out of this room!!!

Today, we are feeling good. It feels like things are getting better slowly and that's all we're hoping for!

Sunday, May 17, 2009

pin care and therapy

We were able to get a better handle on the pain. That was a relief. The nurses did pin care for Jack, basically they washed the fixator with a peroxide solution. They had a child-life specialist come with them. Her name is Shira and she is by far the best person in this hospital. Basically, her job was to explain to Jack what they were going to do and then to keep him distracted while they did the cleaning. She worked wonders!!! Not a single wimper during the whole cleaning. What a relief.

The PT came in to do a little therapy. I really wanted to get him out of bed, but he was so scared that it would hurt that he was fighting us. We did get him to sit on the side of the bed but he was so upset it wasn't worth doing much more. I was disapointed because I really wanted just to hold him on my lap, but while he was sitting up I did get to give him some hugs which felt really good.

He fell asleep immediately after the PT left. He is on so much pain medication that he's in this semi-sedated state. It's nice to know he's not hurting so much anymore, but it's so hard to see my vibrant boy struggling to keep his eyes open.

We did get some visitors today. Jack had a friend from school that stopped by with his parents. Jack was sleeping so he didn't actually get to see him, but they left an amazing care package that warmed his little heart up when he saw it. My parents brought Max by. Oh, how I miss that little guy. He was his normal, bouncy self and the normalcy that he brought into the hosptial room was such a relief. Jack was so excited to see his nana and papa. He played a little, ate a little, and fell back to sleep. It was so hard to say good-bye to Max but he was happy with going back home with my parents. Mia is doing great with my sister's family. She's quite attached to my sister and insists that Mindi holds her all the time. It is such a relief to know she's happy, but we miss her so much!!! Miss Mia usually goes everywhere with me, so I'm having a hard time going so long without seeing her. My brother and his wife also came to visit and as always, the laughter that Rick provided was great. It's nice to laugh and forget how crappy our current situation is.

Let's pray that the pain continues to be managed. I am dreaming of getting that epidural out, so we can lose all these wires and tubes. I joined a online support group for parents of kids with fixators and my inbox has several messages of other moms telling me we just have to get through these first 2 weeks. They've promised me that in 2 weeks, I'll be yelling at Jack to settle down or he's going to break the fixator. Right now, that seems hard to believe. I've asked myself a hundred times if this is worth it. I know that 5 months from now I will be so glad we did this, but right now it's hard to think we chose to do this.

Tomorrow afternoon, I'm going to get the little ones and spend the night at home with them. I'm hoping to leave Max with a friend on Tuesday and come back to the hospital with Mia. I'll continue to be back and forth until Jack is home. It kills me to think of leaving him, but I think the little ones need their mom too. Jon will be here with Jack at all times...he is just amazing with all of this. His medical training definitely is a blessing at times like this and he's a great I know Jack will be in great hands.

So tonight we are hopeful. In a much better place than we were last night. We know that this WILL get better, so we're full of prayer and as always, trying to focus on the positives. My sister in law told me that Old Navy is having their $1 flip flop sale this weekend...I just may have to go seeing as I promised Jack a pair in every color :)


Just a quick update. We're having some problems getting Jack's pain under control. He's at the maxiumum dosage for his epidural, so we upped the frequency of the vallium and added in some tylenol with codeine. It's hard to believe, he is still in pain. He seems comfortable for about an hour or two and then will wake up screaming in pain. Jon and I are doing our best to keep him distracted and calm, but it's so hard. He's in a bed connected to wires and tubes, so it's frustrating to not be able to give him a hug. I would love to just have him sit in my lap right now, I think he'd feel better and I know I would!

I'm not sure if the epidural is coming out today or not. It would be nice to get it out because a lot of the wires and tubes can be taken off once the epidural is out. However, we're afraid that oral meds won't control the leg pain. We're waiting for the pain management team to get here.

We were supposed to have PT at 8:15, but our nurse is having them come later. We're also scheduled for pin care today.

So, please pray that a solution for the pain is found today. We'd love to get that under control, get him out of bed, and maybe eating a little.

Jon and I are so proud of him. I don't know how such a little boy can have such strength. We know we just need to get through these next few days and hopefully before long, this weekend will be a distant memory.

Saturday, May 16, 2009

1st PT session

Can I just say...sitting in a hospital room is soooooo boring. I mean, really really boring. And you're sort of damned if you do, damned if you don't. Sitting in the room staring at one another gets a little old, but leaving the room is heart-breaking. So many babies and really really sick kids in here. It's a tough place to be.
Doing a crossword puzzle and watching a movie with Daddy:

Jack is hanging in there. He had his first physical therapy session today. It went a little rough. We got him sitting up with his feet over the edge of the bed. We thought he'd love that because he is so tired of laying flat and he's been complaining of the tape from the epidural hurting his skin. Unfortunately, sitting up did NOT relieve that discomfort...add in the pain from the PT bending his leg and it was torture. He was in so much pain and the PT was trying to distract him by asking him questions about school and his family. He was trying his best to answer her between wasn't pretty. But, it's over and shortly after the nurse came with our favorite thing in the world, the Valium, and I started reading his book and he was out within 5 minutes.

After a 2 hour nap, he woke up for a snack. Jon had gotten him popsicles and saltines. The popsicles were a 2-pack and Jack informed Jon he was going to only eat one because eating two would be "way too much sugar." He wouldn't try the saltines because they were the low-sodium kind and he "only likes the ones with salt." sheesh, talk about hard to please. Kidding, of course. Thankfully, I had a bag of goldfish crackers and he is happily munching on those playing MarioKart, which after Valium is my favorite thing in life right now.

I just got instructions to finish coloring the picture of the Painted Lady caterpillar that he had started earlier. I hope my work lives up to his expectations :) I'll keep you posted.

Valium is golden

Last night went well. After the pain was under control, Jack slept from about 7 until 11. He woke up and played some video games from 11 until about 1 am. The nurse came with his valium and he was out until 6. He woke up with some discomfort...more from the epidural tape, IV, and all the sheets/pillows/blankets stuffed around him. I think he was more uncomfortable than in pain. We watched a movie until the nurse came with his Valium. Within 5 minutes he was peacefully resting. The Valium is to relax him and prevent muscle spasms, and it is the greatest thing in my life right now!

Right now we're hoping that he can keep down the juice he had this morning so we can graduate to some broth or jello. He is starving....truth be told, so are Jon and I, but I challenge you to eat in front of a 6 starving 6 year old that can't! We're thinking we're going to sneak out and each grab a quick bite to eat.

Jack is holding up okay. He told us he's scared about what else the doctors are going to do to him :( We're trying to reassure him that the worst part is over, but I can completely understand his worries. We're not sure what is in store for us today, if he'll be getting out of bed or not. We'll keep you posted!

Playing DS with his animals and blankie that never left his side.

Friday, May 15, 2009

Surgery Day

Thanks Rick for the update. The surgery went well from what we hear. They were able to put an epidural in and will be leaving it in for a few days.

We met Jack in recovery and he was slowly waking up. After an hour or so, he was up, playing video games and drinking water. He said, "this doesn't hurt at all." We showed him the fixator, he paused his video game, glanced and said, "cool" and went back to his game.

Unfortunately the anestheiologist decided to lower the pain medication. Jack proceeded to projectile vomit the water all over Jon (great aim that boy has!) We got transferred to our room and he started complaining of pain. We told 2 residents and our nurse about 5 times....after an hour or so someone from the pain management team came up and realized he is NOT kidding, he is in serious pain. She gave him a quick dose of medicine and upped his epidural meds back to where they were. Of course, this made him naueous, so he vomited the water again...but is now resting peacefully.

So.....we have yet to keep anything down liquid-wise. But, the pain is under control. At this point, that is our only concern...once the pain lessens and he's taking less medicine, he'll get to eating and drinking again.

The fixator....oh, the fixator. Let me just say....seeing pictures of the fixator does not prepare you for actually seeing the fixator ON YOUR CHILD. For those of our readers that are facing a limb lengthening in the future.....look at lots of pictures of fixators and then multiply that sick feeling in your stomach by 1000. I have yet to get a real close look at the pin sites or watch them change the dressings. I'm observing from afar at this point, and thankfully my amazing husband has promised that I can take my time...he'll take care of everything....for the next 10 days at least!

Overall, we are feeling good. The surgery is OVER!!!! WOOHOO!!!!! We know these next few days are the worst and we have today over, for the most part. We appreciate all the messages and good thoughts. Our hearts are full of prayer and hope for this to work!!!

Before surgery, looking a little nervous, but very brave:

Surgery is over, Jack is doing Well!!!

Getting to the point as quick as I can, surgery is over and Jack is doing Well!!!  I only have a couple more detail other than that.  The surgery started earlier than expected because the case before him finished early.  Jack is still sleeping and just starting to wake up.  Jon and Heidi are right by his side helping him out.  

On a personal note, what a brave big boy.  I know he has more courage than I and has such a good spirit about everything.  He and his whole family always put a smile on your face when you see them.  Heidi, I used spell check :).

Thursday, May 14, 2009

Let's Get This Party Started

Jack took the news of the change of plans well. Of course, that could have something to do with the fact that I told him on our way to Toys R Us to buy him whatever he wanted. We're not above out-right bribery in this house.

We're set to go tomorrow at 10:30. Which means if we are in the OR by noon, it'll be a miracle. The surgery is about 3 hours long, so hopefully by early afternoon it will be over. And then, we can all breathe.

My brother Rick will be updating the blog as soon as Jack is out of the OR and we see him. So, please excuse any spelling or grammer mistakes that he makes (just kidding Rick) :)

Jack's last day of Kindergarten was today. He was sad to say good-bye, but excited to hear that he can spend the next few months in his pajamas :)

Jack had his first surgery on May 9th, 2003. He was 6 weeks old and was sedated and intubated for 10 hours for hip/foot surgery and an MRI of his spine and brain. I remember thinking that day that it would be so much easier to do this if he were older and we could explain to him what was happening. Now, he's 6 years old and I can't help but think this was so much easier when he was a baby. Truth is, it's never been easy to do this and it never will be. But this surgery has been hanging over our heads for 6 years now and it will feel soooo good tomorrow to check it off the list. I know we have a lot of support and prayer and we appreciate that more deeply than I can put into words. Please know that despite the worries that we carry we are filled with excitement and celebration right now. Jon and I are very strong parents, and we have been blessed with a son that has more strength and courage than anyone I know. Add in his fabulous sense of humor...and he's going to be a real catch someday!

Thank you to everyone that follows our blog. We promise to updated it often throughout this journey. We also wanted to say a big thank you to my parents and my sister's family...they'll be keeping our little ones all weekend. It is a relief to know they are in good hands and we don't have to worry about them. Please don't send them home too spoiled!!!

Wednesday, May 13, 2009

What is going on????

I hesitate to post this here, for fear that in another hour things will change again!

Back to the original plan. We are doing the tibial lengthening on Friday at 10:30. Jon and I really challenged her decision to make the change in the first place and after consulting with's been decided to keep with the original plan.

None of this is too shocking. Jack's case is an original...this complicates everything b/c there is no presedence of a treatment plan to follow. Making medical decisions for him takes a team of doctors (usually from all over the country!) Everyone has their own opinion on the right way to do things and of course, Jon and I get to weigh in too.

Sooooo.....let's hope that things don't change again. We are much more nervous now because this surgery is "the big one". But, at this point, we all just want it DONE! I am excited to get Jack from school because I think he's going to be excited.

Jack lost his first tooth last night. It was very low-drama...Jon reached inside his mouth in the middle of dinner and pulled it out. Jack told us the rest of the night, "I feel so different about myself now that I've lost a tooth. I feel like a different person."

Can you imagine how he's going to feel about himself when he sees that fixator on his leg? YIKES!!!

Tuesday, May 12, 2009

Slight change of plans

We got a call from Jack's surgeon yesterday and she wants to make some changes to his surgical plan. Originally, the plan was for him to have the leg lengthening this Friday and then after that process was done to do a patellar tendon lengthening on his knee. She has consulted with a couple of her colleagues and they have decided to do the patellar tendon lengthening this Friday and the leg lengthening in 4 weeks.

Soooooo.....that's the new plan. A bit disapointing because we were all really looking forward to getting the leg surgery over with and that process started. The tendon lengthening will still be on Friday and he will be in the hospital through the weekend, but should be feeling good again by next week.

I could go on and on about how this really complicates things for us, but I'll spare you. It's a huge inconvenience, but we're trying to stay focused on what's important...doing the right thing to get the best results.

On a happy note, I was the "special visitor" at Jack's school today. He invited me to school to help him share with his classmates the details of his surgery. He definitely listens to us and knows what's going to happen! His classmates asked the sweetest questions afterwards. One girl asked when he'd be back and school and when we told her he wouldn't be back until the fall, the entire class was so sad. It was very heartwarming!

We'll keep you posted if there's any more changes.

Friday, May 8, 2009


Incurable Optimism

Did anyone watch the Michael J Fox special on optimism last night? Wow, what perfect timing for our household!

Last night's show was about optimism and how optimists view life differently than pessimists. I've never considered myself as either an optimist or a pessimist, I've always thought I was more of a realist....sort of a "prepare for the worst, hope for the best" mentality. I really recommend that everyone find the time to watch ths'll make you re-think how you think about life! One thing that MJF said last night that really resonated with me was, "Optimism isn’t about hoping for the end result. I’m content to enjoy the hope, without needing to be assured of the outcome.” AMAZING!!!

Anyway....the program was really great for Jon and I to watch, helps us to refocus on the positives.

Monday, May 4, 2009

pre-op appointment

We had Jack's pre-op appointment with Dr. Kogan this morning. Jack was a little nervous, but Dr. Kogan is awesome and got him to open up a little. She spent a bit of time talking with Jack, walking him through what will happen the day of the surgery. He had written down a few questions to ask her and she answered them. I think he felt better after that and I KNOW he felt better when she sent him down the hallway to pick out some treasures out of the toy chest.

She gave Jon and I the specifics. She isn't going to do the patellar lengthening after all. This was to help with his knee-flexion. She's afraid it might complicate the lengthening process. She thinks she'll wait until after the lengthening is over to do that. His current LLD is 6 cm. The ultimate goal is to get it totally lengthened, which is ~5 cm. We're going to leave the leg a little short b/c he does limp when walking and keeping it short minimizes tripping. She can't give us a guarantee of how much lengthening we'll all depends on how his bone responds to the process. The surgery itself will take 3 hours and the hospital stay can be anywhere from 3-10 days. She's guessing 3 days, but I think she wants us to prepare for more.

He'll come home with a wheelchair and crutches. That should be are we going to keep him off that leg for a month??? If I could come up with a way to install a system of monkey bars throughout my house that would be perfect! He could just swing Tarzan-style throughout the 1st floor!

On the way home from the appointment, I asked Jack what he thought of not having to wear a big shoe lift once this is over. His face lit up, he is thrilled with the thought! He loves flip flops, and is always jealous of Max because Max wears them all summer long. I told Jack I'd buy him a pair of flip flops in every color. He liked that idea. I did too. In fact, I think when this is all over I just may treat myself to a pair in every color too.

After the appointment, Jon and the boys went to LegoLand. I was under the impression that my living room is LegoLand, but apparently I am mistaken.