4 wks post surgery

We got the big red cast taken off and a big green one put on in celebration of St. Patricks day! Nolan's bone is healing well, but it is curving just a bit. Dr. Shoemaker molded his leg in the cast a bit today to correct it. We go back in 4 wks and HOPEFULLY this is our last one. He is in a long leg again but he made the bottom flat so he can try to stand on it.

He was such a trooper! Just some fussing but no tears the whole time. He had to get the red cast sawed off, X-rays with no cast on to support his leg, pins pulled out, antiseptic rubbed over his pin sites (one was a little infected), glue removed off his suture sites, leg molded in a straight position, and a new cast put on. He really does inspire me every morning to put on my big girl panties and deal. I love this kid so much.

As for the comments that bombard me everywhere I go...it's not getting any better. I'm so sick of "poor baby" and "it's ok, mom's drop their babies all the time." I've started telling people it's a skydiving injury or he was running with the bulls. If people keep pressing I honestly try to make them feel as guilty as possible for not minding their own business. I know it's horrible. I usually tell them all the gross details of the surgery to correct his BIRTH DEFECT! Of course then I get the...well did you do something wrong? I honestly can't win. Good news is that we only have 4 more weeks left of the cast and hopefully we are done with inappropriate comments coming at me from every angle.

Check up

Today we had our 1 wk post op check-up. They took the spacers out of his cast, closed the gap left for swelling, and put some red over the top. Figured feb is the month of love so red is appropriate. I think I'll get green in March.

The Post-surgery post

My kid is a rockstar!

The surgery went well. He was under for 2 hours total. Kaiser was awesome and let me be in the operating room as he fell asleep. It was really hard seeing him so scared but at least he wasn't alone and scared. I did cry for a good half hour in the waiting room though.

Both his tibia and fibula are broke. Dr. Shoemaker opted for a dome osteotomy to correct the tibia with 2 pins going through the bone to hold it in place as it heals. The fibula is just broke and lined up together. The tibia will act as a splint to line up with. We spent one night in the hospital to monitor his swelling and we were home by 2pm the next day.

He is on 2 dosages of Tylenol with codeine at night and 1 does of children's Motrin during the day. He is happy in a carrier (we use our Tula buckle carrier and ocah custom mei tai.) and is fine sitting playing with his toys. He does get frustrated that he can't crawl sometimes. He is still napping the same and sleeping well at night in his crib (we just transitioned him to the crib a month before the surgery).

The big revelation I have taken away from all of this is the beauty of positivity. Nolan is this little beam of sunshine even with pins and a massive cast. It makes me have a quick attitude adjustment whenever I see his huge smile.

Update

So we had our 1 yr check-up and it didn't go quite to plan. First having to track down my orthopedist to get an appointment was incredibly frustrating. Thankfully, now have every direct line number for Kaiser orthopedics. As for the appointment...there was no correction to Nolan's leg in 6 months. It's still showing an approximate 130 degree bow. Then there was the bomb..."I think it's time to consider surgery." This option has been lingering in my mind since day one but the optimist in my believed his leg would straighten out. Dr. Shoemaker said Nolan's case is the worst he has ever seen but surgery will be a definite full correction. After my initial panic attack, I knew he was right.

The night I broke the news to Cameron and he was shocked as well. The other option to consider was a brace and re-evaluate in a year. However the constant pressure on the leg from walking would hardly help the situation. After discussing our options, we both agreed surgery was necessary.


A few days later I got a call from Shoemakers office claiming someone had canceled and they could get us in within 2 weeks. The decision I had seemed so confident of even hours previously suddenly seemed like the end of the world. I kept it together on the phone. But I couldn't help but to break down and cry once I hung up.

My sweet, delicate, loving little man was going to endure a surgery that makes most grown adults run and hide. They will be breaking to bone, cutting a wedge on the outside of the curve, and the re-inserting the wedge on the inside. He will then have pins and a cast for 4 weeks. Following that will be a walking cast for 6 more. He isn't allowed to put any pressure on the leg for the first 4 weeks.

I'm so nervous and scared for my little dude. The last thing you ever want for your child is to deliberately put them through pain. I know that this decision is best though. I get so sad when I see him try to walk or stand. He gets it for a few seconds and then falls down crying. He is so angry that he can't walk or keep up with me. He knows something isn't right. I know this will all be worth it when I finally get to see him take his first steps. It's something most parents take for granted. I know that when I finally see it, I will be recording it and showing everyone around me. Watch out stranger in line at Target...you will be seeing a video of my baby walking. There was a point in my pregnancy where I didn't even know if he would be able to walk.

Oh and let's not forget the LLD. As of now Dr. Shoemaker doesn't see a significant difference. However, when you break the bone, it stimulates growth. His left leg will be getting a little longer after the whole surgery. Hopefully if there is any sufferance, this will correct everything and no more surgeries necessary! At least I could end the post on a good note. Lots more info and photos to come tomorrow post-op.

Recess is over

We have been having a great time on our 2 month break.  It occurred to me that I should update the blog but no...we were on a break from treatment so I took a break from blogging too.  Within the past 2 months my hubby and I went on a trip to San Francisco.  We went camping in the Santa Cruz mountains for 2 nights then went and visited the city for another 2 days.

Here is Cameron and Nolan hiking in Big Basin.

Here is how excited Nolan was to visit the Academy of Sciences in Golden Gate Park.  This was inside the rain forest exhibit and there were butterflies everywhere.

I was home for 3 days and went back on a plane to Boston!  Here is the little man and I on board the USS Constitution.

We have also had good family time.  Cameron recently got a new job so things are a little less stressful around here.  He is working for an awesome company (who has awesome health care) and we will continue to receive Kaiser health care with his new employer.  I am so thankful we get to keep all of our doctors.  I finally was feeling ok with everything.  And I am SO SO SO happy we only had to pay 2 months of cobra insurance.  We made it work but I was not a fan of writing a $800 check for something that used to cost $80.

So in the middle of all these good times I got the dreaded call from the orthopedist.  It's impossible to ever get an appointment so I always get a call the day before and am told a time to be there.  I got the call yesterday to be there today at 1:45pm.  I know it is necessary but I am just so afraid of bad news.  I've gotten really good about being relaxed and not stressing.  So maybe only having 24hr notice is good...it only gives me 24 hrs to stress and I can relax the rest of the time.

Here are the xrays from the appointment today vs. May 16th.  Today's are on the top and May's are on the bottom

Here is the close ups of a frontal view and a side view.

What do all these pictures mean? Well the curve of his leg was 120 degrees in May.  Today it is 140 degrees!  That means there was approximately 20 degrees of correction with no casting!  Now only 40 more degrees to go before getting to 180 which is a straight line.

Also Dr. Shoemaker pointed out the tiny little white dot that is at the end of his tibia...can you see it in the left xray?  That dot is where new bone growth will develop and it uses that bone? as a guide.  It is supposed to be in the middle...Nolan's is on the side.  Usually this would be bad but in our case it's good!  It shows that his body knows there is a problem and is fixing it.  Hooray!

We will go back in 4 months for a recheck.  At the time he will probably be fitted with an AFO or otherwise known as an ankle foot orthodic to help is foot stay in place when he learns to walk.  The shoe will also provide an extra lift to make up for his LLD.  Right now it is estimated to be 2-3cm and will be corrected with a leg shortening surgery of his right leg when he is 4 or 5 years old.

So far so good!  Thank you to everyone for your positivity.  We need lots of good vibes to make it through the next few years.

A well needed break

So we went to the ortho yesterday morning and he was happy with Nolan's progress. We took X-rays and it showed that there is new bone growth on the inside of the bow and nothing on the outside. What does that mean? It means his body knows his leg is supposed to be straight and is working on fixing it. We now are on a 2 month break from casting! This doesn't mean we are done...it's just a break...like Ross and Rachael from Friends. We go back in 2 months to do more X-rays and see how is body is handling everything. As of right now there are 3 ways things could go:

1. His body does fine and we don't need anymore treatment till his surgery to correct the leg length in a few years
2. His body is fixing the problem but just not fast enough to support him walking. In that case he will need an AFO which is a shoe like brace to support him when he is walking.
3. There was no correction made during the 2 month break and we are doing a second round of casting.

I am of course voting for #1 but I will not be upset if we have to start another round. Once we got through that first tough time; casting was pretty easy. My biggest complaint was that he wouldn't sleep well. He wasn't unable to reposition and fall back asleep....so whenever he did wake up he was wailing and it took awhile to calm him back down. Plus every time he woke up he would need to nurse to calm back down. I am just happy that I have been able to successfully breastfeed my little one so that I can give him the love and comforting he has needed during his treatment.

Since we have been cast free for almost a week he is only waking up about 2 or 3 times at night (which isn't a big deal since we co-sleep). He is sleeping from 9pm till 8am. And he is also taking good morning and afternoon naps.

I hit super mom status yesterday when I was able to scrub my bathroom tile floor, seal the tile, scrub the toilet, scrub the countertop in the kitchen, scrub down the kitchen cabinets, sweep the whole house, AND bake banana muffins! I'm pretty sure it was the most productive day I've had since he was born! Today was mopping but it looks like we are having a bit of a nap boycott. He has one more chance until I wrap him to my back and he helps get the chores done.

Attached is new X-ray followed by his first one. It's hard to see the change unless you look at the distal end (ankle joint) of his tibia and fibula. Also remember that this condition takes 5 to 7 years to fully correct. It is easy to get discouraged when you only see month to month and not year to year.

End of cast 3

Here is a picture of Nolan's progress. We finished cast number 3 on Friday and we are enjoying some time off before number 4. We have a doctors appointment on Weds morning. Hopefully Dr. Shoemaker likes what he sees!

Also attached a cute picture from mothers day! Since I now have one of every type of wrap I'll be posting some cast babywearing pictures really soon!