Shiny New Struts

We went to Rush yesterday to have the fixator struts changed. I swear if you could put our car on auto-pilot, it would take you to Rush! The car ride there was loooooooong with an uncomfortable, crabby, and very hungry little boy. Everything went fine. Jon carried Jack back to the OR (our request) with his ni-ni (very special, very tattered blankie). Jon said Jack was checking out the OR, and we were wondering how many 6 year olds know what the inside of an OR looks like! Jack panicked a bit when they put the anesthesia mask on, he always does. Now, this is the kid that will watch a nurse put in and take out an IV, but hates the gas mask….strange! Jon and I had enough time to grab a quick bite to eat and within 30 minutes Dr. Kogan was done. They page us to a waiting room and we talk to the doctor over the phone from the OR, because she had another case to get to. Her first comment to Jon was, “please tell me that ni-ni had a hole in it before we took it to the OR.” She was concerned that they had put a hole in Jack's blankie in the OR. She’s a mom, can’t you tell??? And that is why we LOVE her, she “gets” kids!

Anyway, she said he definitely has an infection. She scrubbed the pin sites and gave him a huge IV dose of antibiotics. She said to keep him on the oral antibiotics and keep an eye on the infection. She said if the new struts get to be hard to turn (they weren’t this morning) we may have to switch to turning more often….I really don’t want to do that, I like to stick to protocol. :) It would be nice to do the lengthening twice as fast, but there are risks….and I don’t like risks! We'll see, like I said, today they were nice and easy to turn.

Here’s are new shiny struts. They go up 62 cm, we won’t need to go that high, but another 3 cm would be fabulous!!!!

Jack was starving afterwards, so the ride home went well. I sat in back and helped him eat potato soup (his favorite) and then he crashed into one of those anesthesia-still-in-the-system naps. It was heavenly...until I made myself carsick by reading in the back seat! :)

Here’s a picture of the new foot brace. It’s been tolerated quite well!

And, here’s a picture of Jack…sending some love to his readers that we love so much!

appointment update

We had an appointment with Dr. Kogan today. The xrays were amazing, we have 3 cm of bone growth! Dr. Kogan was REALLY excited, you could tell she was having one of those “this is why I do my job” moments. It was very neat to be a part of that! She thinks the reason we are having difficulty turning the struts is because his bone is healing so quickly each day. We asked what that means and she said, “It means we need to hurry up.” We can’t turn more than 1 mm a day, so she was joking…but I think that the more we lengthen, the harder it will continue to get and eventually we won’t be able to do anymore, and at that point we’ll be done. This is just *my* thoughts based on what I’ve read, heard from other parents, and from things Dr. Kogan has said. I am hoping that the quick-healing means that the consolidation phase (bone hardens, still in fixator, can be weight-bearing) goes smoothly.

I think Jack is getting another infection in the same pin that was previously infected. I’m not sure it ever really cleared up. We’re going to keep an eye on it, he will be getting a super dose of antibiotics in the OR on Monday, so hopefully he’ll be fine until then and that will do the trick. This one pin has been problematic, it’s really the only one that bothers him. Dr. Kogan said technically she could take it out, she wants to keep it in until the lengthening is over (~30 more days).

Jack’s PT pointed out to me that Jack’s foot seems to be dropping a little (like as if he is trying to point his toes). I think it’s called plantar flexion. Anyway, he was fitted for a new foot brace (I’ll post a picture tomorrow). He did not like it at first, but I stood him up and showed him how his toe is touching the ground and the rest of his foot is not….he realized that’s a problem. We told him if it continues to get worse, he’ll need a foot surgery after this was over and amazingly enough…the new foot brace was much more tolerable after that!

Overall, a good appointment. The worst part was the car ride. The poor kid is just miserable in a car seat.

Cute story….the other night we went out for dinner. As we were leaving, Jack (in the walker) was trying to open the door. He got really angry and says to me “all places should have those doors with the buttons you push to open the door (referring to handicapped-accessible doors).” I told him that I would help him open the door and he got so worked up and says *he* wants to open the door for himself. He went off on this rant (I was very proud, I love a good rant) about how places are just not made for people in wheelchairs and walkers and how it’s not fair and he tells me “it makes us feel sad and frustrated. We want to do things for ourselves.” Jon and I explained to him that when he could do something about that…grow up to become an activist, lawyer, etc. Fast forward to today….we’re on our way to Max’s t-ball game and Jack says it would be fun to grow up and be on television, but “I’d rather fight for the wheelchair people.” Then he asked me not to forget that because that’s really what he wants to grow up to do, but he’s afraid he’ll forget when he’s bigger what it is he wanted to grow up to become!

Fraggle Rock

My favorite show as a kid was Fraggle Rock.

Little did I know someday I would actually get to live with a Fraggle.

I haven't updated for a few days, not too much going on. Therapy visits are going well, massage is going well. We go to the doctor to see Dr. Kogan on Thursday for xrays and a check-up. We are scheduled to have the struts changed next Monday. This is very exciting because it means he will have outgrown the original struts. This is an out-patient procedure. He will be sedated, mainly because it's easier (and quicker) for the doctor to do it this way. Sort of a bummer, because he won't be able to eat all day Monday, but I'm sure he'll be rewarded with ice cream and other highly-desired edibles once it's over.

As of today, we are at 2.5 cm. Here is Jack's shoe, the foam lift insert is 6 cm. With the growth that we have so far, we would be able to remove 2.5 cm of lift, which is the white layer of foam. If we can get another 2.5 cm - 3 cm, he would only need a very small lift, which can be worn inside his shoe. If we get that far, I will be dancing in the streets, and Jon will be at the mall spending a full paycheck on flip-flops and crocs. Oh, the things we have promised.....

Here's a picture of the current struts. You can see the progress he has made. He started at the bottom of the ruler, and is nearing the top.

So, we're making progress and things are going well. All in all, a good week!

Today is Father's Day, so a big happy Father's day to all the dads out there! I'm a lucky girl...I have a great dad and I married someone who is a great dad. I've been told that I am the spitting image of my dad, which would explain why we find one another so incredibly charming and splendid. My one question is though....does that make Jon the spitting image of my mom???? We're heading to my parent's house for a cookout (we put the men to work in our family, even on Father's Day :) ) I'm hoping Jon gets off work in time to join us! I picked up some steak kabobs last night and I KNOW he can hear them calling his name! Happy Father's Day Jon, from all 3 of your adoring kiddos!

Not much of an update

Not too much to update on...which is the way we like it! Everything is going so well, it's sort of scary. We're enjoying it and hoping it stays this way. We're waiting on a call from Dr. Kogan. Two of the struts we are supposed to turn daily are really tight. Today I could barely get them turned, so we're hoping to find out if there's a way to loosen them. If not, I'll be getting out the wrench tomorrow, which will make Jon nervous....he always gets nervous when I get in his tool box :) We took a one of the incision bandages off and noticed a stitch that is sticking out of his skin! It's the craziest thing, it's about an inch and a half of clear string sticking straight out of his leg. I want to cut it off, but Jack won't let me.

The other really truly exciting news in our house is that Jack lost another tooth. I'm hoping Mr. Tooth Fairy has cash in his wallet because Mrs. Tooth Fairy has none!

I'll end with a cute story....yesterday Jack figured out how to hoist himself from his walker into his carseat. I drive a big SUV (a gas guzzler, which I do feel horrible about) and it's quite a feat for him to do this! He looked at me and says "I'm Jack, the kid that never gives up and works harder than everyone else." :)

Then, on the way home from PT, Max scraped his foot on the curb in the parking lot. He was sobbing all the way home (he doesn't deal with blood....even a teeny tiny speck....very well). Finally, Jack says "Max, look at me. I've got big huge pins sticking out of my leg and you don't see me crying about it." I couldn't help but laugh. A lot.

Milestones and Anniversaries!

I’m happy to report that we are on a string of really good days. The complaints of pain have been much less frequent and Jack’s attitude is waaaaaaay better. It’s been heavenly, life seems much more normal. Let’s hope it stays that way!!! Jack had aqua therapy today at Peak Fitness. He asked me on the way why it’s called Peak and I explained to him that when athletes are performing their best, it’s called being at their peak. We were waiting to get into the pool and he looks at me with his green goggles on, hair sticking out everywhere, and says “I think I’m ready for a workout.” He wasn’t kidding! He swam for 45 minutes. He was having a blast, it must have felt so good to have that freedom of movement and be able to use that little leg. He had a noodle under his arms and swam until he couldn’t go any more. He gets out of the pool, looks at me, and says “mom, I think I’m at my peak.”

The best part of swimming, is it softens the skin around the pin sites so well that tomorrow we won’t need to do much pin care in the shower. When I told Jack that, he told me we need to get a pool in our yard so he can swim everyday.

Tomorrow is a very exciting day, we are at the 2 cm mark. We are all so excited about that, we are 1/3 of the way there!!! Today marks one month since Jack had his surgery. One month??? Really…that seems unreal. Those days are a blur to us, but it seems like ages ago. I am so glad it’s behind us, and really glad that I’ve kept this blog to keep record of everything. I have a feeling (and I’m sort of hoping) that this all becomes a blur someday!

Tomorrow is our 8th wedding anniversary. I said to Jon the other day, “Really? It’s only been 8 years?” It seems crazy all that we’ve done and gone through in just 8 years. We started dating when I was 18 and got married at the ripe old ages of 22 and 24. Over the 8 years, we’ve moved 5 times (twice 850 miles), had 3 kids, made it through med school and residency, battled leaky pipes and crappy cars, went to endless doctor’s and therapy visits….and tried to keep laughing through it all. Our lives have changed so much since we first met….we’ve replaced college drinking games with Uno and Memory and late night runs to the store are for Dairy Queen rather than a case of cheap beer. We still do shout out “nudie” whenever one of our kids decides to streak around the house at bathtime….so maybe things haven’t changed so much! It’s been a great 8 years, I would not change a thing…I’m looking forward to 80 more!

UP

Dare I say we are making progress? Two nights ago, Jon had a heart to heart with Jack and tried to teach him some relaxation techniques that he gives his patients to help them sleep. Jack got up twice that night, which is a remarkable difference compared to the 200000 times he’s been getting up. Friday morning’s shower was a disaster again, and I’m starting think that’s not going to change and I should just get in there and do it as fast as I can and forget trying to calm him down along the way. Afterwards, Jack and I had a talk and I told him I miss the old Jack, my happy, silly, loving kid. He looked at me with that glazed look in his eyes that men get when they want you to think they’re listening, but they’re really not. You women know what I’m talking about.

We had a busy day…Max had swim lessons. He has a new instructor and it’s just him and his friend, Sara. The 2 of them are just too cute together and her mom and I enjoy chatting the 45 minutes away. Then, Amelia had her 9 month check up. She’s our tall (75%ile) skinny (25%ile) baby. Clearly, she’s destined to be a supermodel, but surely will choose something much more fascinating like an astronaut or politician.

Jack had his massage appointment. I am not sure what happened on that table, but it was wonderful. A minute into the massage, he started chatting and just would not stop. It was heavenly…it was the endless silly chatter of kids that really gets on your nerves, but then when it’s gone for a few weeks you really miss it. His massage therapist is married to an artist (a really amazing one) and we decided that he is going to start giving Jack art lessons. Anyone that knows Jack, knows that this is perfect for him! We had sent Jack’s friend (daughter of the lovely massage therapist and amazing artist) a thank you card with a picture of Jack on it, and we were told that she carries the thank you around in her purse. It’s safe to say that Jack was completely flattered about this. He kept bringing it up throughout the night…”can you believe that Sylvia carries a purse? And, like her mom said, she puts *my* picture in it.” Too funny! I was telling the massage therapist about his sleeping problems and she offered to give us some essential oil that she puts on a cotton ball on her daughter’s pillow to help her sleep. So, we left with the oil that we affectionately named “Sylvia’s sleep potion.” On the way back to the car, Jack tells me that he wants to be old Jack again, and that the sad and angry Jack is no fun. We agreed on that one and opted for a hug and kiss rather than a shake of hands. And I made a note that the glazed look face does not necessarily mean that they aren’t paying attention.

We had a date planned, and our first stop was Toys R Us. My aunt had sent Jack a gift card and after 24 hours it had singed a hole in his pocket. He knew exactly what he wanted, a new lego set and we were out of there in minutes (this made possible by the fact that we have ditched the wheelchair and are now using his walker almost exclusively).

Then off to the theater. We saw UP. BEST. MOVIE. EVER. If you love your kids….your spouse….anyone….go see UP. Jon took the boys last week and Jack loved it and wanted me to go see it. I want to go back today and see it again. LOVE IT LOVE IT LOVE IT! And it being Jack’s favorite movie makes me so warm and fuzzy inside….those of you that have seen it will understand what I mean. Anyway, he was a great date, insisting we hold hands until my arm fell asleep. Then, he oh-so-casually slipped his arm around my shoulder and tickled my shoulders. (I’m not making his up people). Anyway…do yourself a favor on this rainy day, get to the theater and see UP.

We ended with dinner at Panera bread. We chatted over a bowl of soup and made plans to head to the bookstore. These plans diminished as Jack was sound asleep before we were out of the Panera parking lot. We got home and tucked him into bed with his sleeping potion. It took about 30 minutes to get him comfy and asleep….but he is STILL SLEEPING NOW….10 hours later. No wake ups all night long.

Yesterday was the best day we’ve had in a month. I think both Jack and I forgot for a few hours about fixators, wheelchairs, pin care, bad-tasting medicine, and just enjoyed one another’s company. I know that we both needed it and what a blessing it was! I’m hoping and praying that we are turning a corner here and things continue on the upswing.

Oh, and for those of you that are wondering….Jon took the little ones on a date as well. Apparently, they did some serious mall walking as he had some shopping to do. (Yes, you are allowed to laugh at that. He was looking for an anniversary gift and not out shopping at the mall for fun). And he took them to Garrett’s to the driving range. How funny is that??? He said Max hit all the balls while Mia slept in the stroller. He said he got quite a few comments from other golfers…I’m sure he did, hanging out on a Friday night at the driving range with 2 little kids! They ended the night with dinner at the Olive Garden and when they came home, they all looked pretty happy as well!

update!

I changed the settings on the blog, so anyone should be able to leave a comment now. I know some people were trying and not able to do so.

Yesterday was an okay day, lots and lots of complaining about so many different aches and pains that I lost track of what was actually hurting! Last night he spiked a high fever and totally lost it. It’s hard to explain, and I know that those of you that know Jack find it hard to believe…but it’s like he literally loses control of his emotions and just starts screaming about everything. Jon and I were wondering what to do to calm him down. I suggested to Jack that we get in the shower and I promised him that it was just to relax and play…no pin care. We stuck him in there and within minutes he had relaxed. I got him a bunch of squirt guns and he sat in there for an hour happily playing and singing. At this point, Jon and I didn’t know if we should hug him or wring his neck. I got him out of the shower and we had a little talk. He had gotten himself so worried about everything he hears us talking about…how he needs to sleep, the infection, the fever, etc etc etc that he just could not settle down. Sometimes I can’t believe this kid is only 6 years old, he takes the weight of the world on his shoulders, and obviously this process is more than he can handle. So, I talked to him and told him the infection was better and the fever was gone (not true, but he needed some reassurance). I told him the doctor said his leg was doing so perfectly he didn’t have to come back for 2 weeks (that’s the truth!) and that if he doesn’t sleep tonight it’s no big deal (meanwhile thinking, "please God, let this kid sleep tonight"). The look of relief on his face was priceless. So, we went downstairs, watched some Ice Road Truckers and I massaged his leg. He did eventually fall asleep and he did have another very restless night, but it was better than previous nights.

So, Jon and I have decided we need to be REALLY careful about talking about anything in front of Jack. He has a HUGE tolerance for physical pain, but the emotional pain of this is more than he can handle. This comes as a shock to us, as he is SUCH a reliliant kid...but everyone has their breaking point and I think we've surpassed his a few times now. Lesson learned....

This morning so far is going well. He has learned to transfer himself to his wheelchair and out. Out of the blue, I hear him yelling, “mom get the video camera, I want to show you what I can do.”

And here's a picture of him doing his favorite thing, going as fast as he can and then letting go. It's actually quite amusing until someone gets run over.

I gave him a shower and did some serious pin care. He hates this and to be honest…I really do too! There are 9 pins and I have to get in there and clean them out, push the skin back, all the while the shower water is soaking me and Jack is screaming his head off. It’s so important to do though and if I didn’t do it early in the morning, I’d reward myself each day with a drink! He definitely has a couple of infected pin sites that I’m hoping the antibiotic clears up soon.

Anyway, it’s almost noon and today (less the shower) has been very low drama and actually quite enjoyable. The boys are playing dominoes now and watching a new movie from Aunt Jen and her family.

I wanted to take a minute and give a big shout out to my 2 little ones. Amelia, who is typically a mommy’s girl and is only happy when attached to my hip (literally) has taken a complete 180 and now is happily entertaining herself most days crawling around putting small choking hazards into her mouth. Okay, I could do without having to dig the choking hazards out of her mouth all day, but the fact that she is happily entertaining herself all day is a blessing. And I know I am completely biased...but how cute is she? This is how I found her this morning.

And Max….he is just a gem. He patiently has been understanding that I am busy with Jack and he seems to be Jack’s favortie target of releasing some frustration. He takes a beating well...what else can I say? Max is a kid that is just wired to be outside all day and he has been SO great about staying inside playing games with his brother. Anyway, I just can’t say enough about Max and what a trooper he is. He starts tball tomorrow and I can’t wait for him to be the center of attention for a while…doing his favorite thing in the world! Here's Max on his birthday:

Build A Bear

First, just let me say…I hate coming on here and blogging after a bad day. But, I made a commitment to keep this honest, so here goes……today was a REALLY. BAD. DAY.

Saturday was a rough day and I was up with Jack allllllllll night long. Sunday was a better day, we went to the Shriner’s circus, which was a nice distraction. We loved the circus, but are all in agreement that we have no interest in actually joining the circus. Sunday night was another miserable night. Jon and I were up with Jack all night. He literally was tossing and turning and whimpering the entire night. He finally fell asleep a couple of hours before I had to wake him up to leave for his doctor’s appointment. Jon cancelled his clinic at the last moment and went with me. He just felt with how rough things have been the last few days he needed to be at the appointment. My mom went with too which was nice, she kept the little ones in the waiting room while we had the appointment. They did xrays, which were AMAZING to see!!!!! He has exactly 12 mm of new bone growing between the 2 breaks. This was such a relief to see and definitely the highlight of the day!!!!! We asked Dr. Kogan about all the pain he’s been having. Some of the pin sites look a little red, but she didn’t think they looked too bad. She wrote us a script for an antibiotic just in case. The muscle aches and pains he’s been having are normal, and part of this process. For the discomfort at night (it’s almost like he has restless leg syndrome) she and Jon discussed a few medicines and they finally decided on Neurontin. Let’s hope it helps!!! We are scheduled to go back in 2 weeks.

We headed to Build a Bear, where as promised we bought a ridiculous amount of cute stuff for their beloved Zebra (Zebrie), Turtle (Simon), and Bunny (Anna). It was a lot of fun!

We got home in time to get to swim therapy. I was unsure how it would go, at this point Jack was a mess. He was/is so overtired, he just gets so worked up and can’t settle down. But, we had to get to the therapy appointment so we went. Jon went into the pool with him and it went okay. The therapist said the first couple of sessions they just give the kids a chance to warm up to the concept of aqua therapy. Jack definitely was not having the time of his life, but by the end of it seemed much more comfortable. I’m really hoping this ends up to be a positive experience for him because he loves swimming. I had filled the prescriptions while they were in the pool, which was good b/c he felt feverish when he got out. Sure enough, we get home and he’s running a fever. I got him in the shower and really tried to clean up the pin sites, which did not go over well. And by that I mean, he was screaming at me the entire time. But, I did it and I’m glad I did. We’re pretty certain he has an infection in one of the pin sites. Thankfully, we have the antibiotic and we’re hoping it clears the infection up. Quickly. He’s been sleeping pretty restlessly for about 2 hours. We’re hoping that tonight is a better night¸but are preparing to be up with him.

So, that’s where we are today. Jon and I are both feeling a little drained by this all right now, and now understand what the doctor said when she told us we do this until the kid can’t take it anymore. Here’s hoping tomorrow is a better day!!!!

CELEBRATE!!!!

The most important thing I have to say today is….HAPPY BIRTHDAY MAX!!!!!

Four years ago today, Max entered this world at a whopping 11 lbs, 1 oz!!!! He was a big ole’ chunk of love then and he still is today! All he wanted for his birthday was a Chronicles of Narnia sword and he spent the entire morning sword fighting before heading to the driving range with Jon. He’s looking forward to eating dinner at his favorite restaurant tonight, Buffalo Wild Wings and I’m looking forward to spending the day celebrating our Maxi Moo Moo…which is the horrible horrible nickname we started years ago and it’s stuck. Yes, someday we will be paying therapy bills to undo all the damage a nickname like that does.

Another reason to celebrate today…we’ve reached the 1 cm mark!!! The turnings are still a bit rough, and to be honest a crappy way to start each day. It is SO neat to think we’ve grown a cm though, we’re making progress. I can’t wait to see the xrays on Monday. My mom is coming with me and I’ve promised the boys a trip to Build-a-Bear afterwards. It should be fun and filled with an excess of stuffed animal purchases.

We had 2 therapy sessions this week. They’re going well, it’s nice to see him getting stretched out because I worry about that leg being so straight all day long. His therapist really worked him Thursday and he told me he felt like his skin was ripping at the pin sites. That was tough to hear, but it’s so important to keep him stretched out. He has his first swim therapy session on Monday afternoon. I can’t wait to see him in the pool. I know at first he will definitely be hesitant, but once he relaxes he’ll love it.

We had his first massage today. He giggled for the first minute or two and then he was a silent, wet noodle for the rest of the session. I think it’s safe to say he loved it. The therapist had his knee bent at a 45 degree angle by the time she was done when he was on his tummy. It was soooooo nice for me to see him so comfortable and relaxed. We’ll be going back weekly…yet another appointment, but so worth it! And the highlight of the massage…he got to see Sylvia, a girl from his class and the daughter of the therapist. Jon and I have a suspicion that Sylvia holds a special place in Jack’s heart….and he was so pleased when she came running outside to see him!

We’ve got Jack up and about in his walker for the most part. He has a little bit more independence and it’s so much better for his back to be up and moving. I took the boys outside the other day and we figured out a way for Jack to play t-ball, swing, and maneuver up and down the swingset. We had a blast with the kids on the swings the other night. It was so nice to see Jack having fun just being a kid and to forget for a while that he isn’t our “patient.” Here’s some pix and a video….now, I know the video holds little excitement for most, but Jack’s comments that you can hear towards the end are really heart-warming.

Oh, and just an update on the cookies....Amelia enjoyed hers too!

Turnings

Yesterday's and today's turnings went better than previous days. In large part due to this guy:

When squeezed, he does this. Gross, I know...but very amusing to a 6 year old boy.








It's something to distract Jack and I think the squeezing when it hurts helps release some of the tension. We called Dr. Kogan and she said the pain behind his knee is where the calf muscle attaches. As the bones grow, the muscles/tendons/ligaments do too...so the pain he has is the muscle stretching. Makes sense because he describes it as a pull that burns. She said to give it a few more days and if it isn't better by our appointment on Monday there are some things that can be done to alleviate the discomfort.


He had his first PT session yesterday. He was pretty excited to see Niki and she was so happy he was there. He got quite the attention from several of the therapists, and he didn't seem to mind that one bit! A lot of the therapy is going to consist of stretching the knee and trying to prevent atrophy of the muscles. We'll see Niki twice a week and do aquatic therapy once a week. I am really hoping the aquatic therapy is fun for him, if so we'll get him into swim lessons. He's looking forward to it, he has a friend from his school that will be in the therapy session with him!


Here's some pictures of the ruler along the fixator struts.





These markings show the progression of the lengthening...1 mm a day. These struts can give us 37 mm of lengthening. Our goal is 50-60 mm, so in a month or so we will need to go back and have the struts changed out. This is a non-surgical procedure, just time consuming. From my understanding, he will be sedated for it just to help keep him still and for the process to go a bit more quickly.


This is the knob that we turn. You can see in the background 3 of the 5 other struts.








And that's about it for the excitement around here. Niki suggested that we encourage him to get up and moving with his walker more and that he can scoot around on his bottom. I'm trying hard not to push him, but it would be realllllllllly nice if he could start doing a bit more on his own! I really think at this point, he is still afraid of potential pain (understandably), but I think with time that will pass and he'll get more of his independence back. I know that will be nice for all of us!