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!
Sunday, May 31, 2009
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 schedule...it 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. :)
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 schedule...it 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
COOKIES!!!!!!!!!
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!
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…..so 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.
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…..so 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
Overheard
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.
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 :)
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!
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!
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