Saturday, July 28, 2012

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 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.

Thursday, May 17, 2012

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's just a 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 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.

Monday, May 14, 2012

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!

Monday, May 7, 2012

Gooooooood news

Well I think it's time for a happy post to follow up my angry rant. Are you ready for it....Cameron got the job!!!!! We are so so so so so happy! So here are all the benefits of the new job: a raise, no worries about me being a SAHM, we get to keep kaiser (blessing and a curse), we get to stay in San Diego, and lots of advancement opportunities. I married one of the most amazing guys out there. I am so fortunate to have found someone who has all the same values I do and can provide for our family.

Now about Nolan....we are 1 week into cast number 3. Dr. Shoemaker will be doing X-rays after cast number 4. There is a possibility that we might be done for a while after that cast. There will still be plenty of more steps in his treatment but it would be nice to at least be done with one of them.

I know it has nothing to do with his treatment but here are some pics of Nolan's first hike!

Friday, April 27, 2012

Angry vibes

I hate kaiser.....

It really has been a love/hate relationship this whole time but I am fully aboard the hate train.  Nolan's 2 week mark in cast number 2 was on Monday....does he have a new cast? No.  Why?  Because there are no appointments.  This is completely inexcusable!!!!!  If the doctor is that packed, hire another one.  But no, Kaiser is cheap and they resort to just not providing care for their patients.  I've called 4 times in the past week.  I finally called this afternoon crying hysterically to finally get through to someone who could help.  I now have an appointment for Monday and a follow-up for Weds the 16th.  I also have 2 new numbers to call "in case this happens again."  That was reassuring last time this happened.  Now I just translate it as 2 more lines someone won't answer "when this does happen again."

Cameron has been interviewing with a new company and I don't care about the money, location, or even travel.  All I care about is the insurance.  If he finds out he gets the job it would be the biggest blessing to be able to find a doctor who actually has availability.

Well I guess the schedulers ears were burning when I was writing this because he just called me with 4 appointments.  I guess I need to send some angry vibes more often.

Wednesday, April 11, 2012

Cast number 2

I've been holding out on updating the blog for fear of jinxing Nolan's good behavior. We went to see Dr. Shoemaker on Monday night and he was pleasantly surprised how well cast #1 helped to straighten out his foot. His leg of course will be slower at correcting.

As for adjusting, He slept ok Monday crying but very fidgety. Since we co-sleep I got kicked with a heavy plaster cast all night. Plus he was up at 7:30 where he usually wakes up at 9 after a 7:00 feed. Tuesday went better. No fidgeting but he was up at 7:30 but went back down around 8:30 so I could get a shower. Hoping by tomorrow we are 100% back to normal...or as normal as is gets in the cast.

So far we haven't had to use any Tylenol for cast 2 but I do notice his patience is shorter in the cast then not casted. If something bothered him before he would fuss a little before we go straight to wailing. Other than that he has been great.

Baby wearing has also gotten way easier! He does really well in our Tula carrier (kinda like an Ergo but WAY better!). I have also been using a ring sling for quick up and downs. It's working great for short trips or quick chores around the house but he will not sleep in it. I guess he likes the big hug feeling of his carrier vs. the sling. Pictures to come of how we have been managing to baby wear with the casts!

Monday, April 9, 2012

Cast number 1 done

Last night Cam and I took of Nolan's cast number one. This time it was because we were supposed to! We get number two on tonight. In the meantime here is an update on what his little leg looks like.

Sunday, April 1, 2012

The calm after the storm

Well it took 3 days. By Friday my happy boy was back. I am still trying to figure out baby wearing options but hopefully he will work with me. Please enjoy the picture that summarizes the past few days. I love how his little attitude shows through. Hopefully it doesn't grow like his mommy's big attitude.

Wednesday, March 28, 2012


Every post I try to be positive about casting but it's getting harder and harder. I'm in a catch 22. I can give Nolan infant Tylenol and he is happy. However for his size I can only give it for 24 hrs before it can become harmful to his little system. Or I could just take the cast off and have my happy man back...but that doesn't solve anything. It seems like the only. option is to be a complete wreck while my baby cries for the next 3 months day and night. God I hope this gets easier.

Tuesday, March 27, 2012

Cast number one part 2

This morning we got the second cast put on. Well...technically it's still cast number one since number one only lasted 3 days! The doc was out of office all week last week so this was the earliest I could get in. So far so good. I do have to admit I am on edge since the last round went so badly. I went to the zoo this morning and walked around. He actually slept in his new Tula carrier and it's working perfectly with the cast. We did have a few tears putting him in but he got comfy pretty quickly. He has already slept a lot more this time around. Let's hope this time we can keep in on!!!!

Monday, March 19, 2012

70 hours

Cast number one lasted 70 hours. By Saturday morning at 10 am, I was soaking that sucker off. Of course I was a wreck. On one hand I want my little boy to be happy and comfortable and on the other hand I know he needs his leg to be fixed. I finally had enough when he was refusing to eat and the cast was beginning to cut the inside of his thigh. I'll probably get a lecture by the ortho office but oh well.

Friday, March 16, 2012

The first 48 hours

This casting thing is a little harder than I thought it would be. I honestly thought it would only really be inconvenient for me...yeah a little selfish I know. The little man has been having a really hard time adjusting to the cast. The first 5 or 6 hours he was good but once he realized it does not come off, he started screaming. That night he slept for 30 min then screamed for 30 mins...all night. The morning I dug out the infant Tylenol I was given at my shower (thank you Tim and Sarah!) and started giving him half the dose he should get. After trying all day...and failing...I went up to the full recommend dose. That stuff is magic! He slept from 8:50pm to 3:44 straight! We are still trying to figure everything out but I think he is finally getting used to the cast. The good side of all of this is that I sewed him some super cute baby leggings to protect his bare leg! I love my sewing machine!

Wednesday, March 14, 2012

Sad day

Ok I am probably just being dramatic but my little one had to be casted today. We got X-rays done 2 months ago and his leg was at a 45 degree bow. The X-rays today show the same. His body is not correcting it quick enough. The cast will help his leg grow straighter from now on...hopefully. The doctor wants to do 4-6 casts that are changed every 2 weeks. Hopefully he will get used to this extra baggage for the next few months. If this doesn't work he will have to have a surgery where they break his leg and reset it straight.

I'm trying hard not to stress but the cast makes everything real. For the past 3 months I've had a completely normal little boy. The only thing abnormal about him is that he is toooo damn cute!!! At least that's what the average onlooker sees. Now with this cast it's a neon light shining "look what's wrong with me!". Not just to everyone else but to me. It was so easy to ignore until we hit this point.
The positive idea I have to keep repeating in my head is that once his leg is fixed, by cast or by surgery, his leg will be completely corrected. He won't walk funny, he will be able to do any sport he wants to do, and he won't have a neon sign shining "look what's wrong with me.". I love my little man so much. I hate the idea of anyone seeing him as less than amazing.

Wednesday, February 1, 2012


Ok I have been neglecting the blog. Being a new mom is amazing and stressful all at the same time. So here is the dish on Nolan's latest treatment.

On Jan 5th my husband and I started the trek to LA. While driving up I called Aetna to get his insurance number and tell told me I wasn't covered. I began frantically calling my hr department to get everything figured out and we found that when I called to add Nolan on to my insurance my open enrollment info was changed back to kaiser. My hr told me they would get everything straightened out in a few weeks. I took the opportunity to tell them I wanted to stay with Kaiser. It felt like one of those moments where it was meant to be. Now we are back with Dr. Shoemaker.

A few weeks ago I went to our 3rd appointment with Dr. Shoemaker. He was very upfront and honest with me which I appreciated. He explained to me that casting is the preferred treatment option but there has been no studies to show casting will improve his condition. He also told me that movement is important for proper growth and development. The other option is the stretching exercises we have been doing since has was a few weeks old. The decision was to take baseline X-rays, continue stretching exercises, and take X-rays again in 2 months. Currently the bow of his leg is at a 40 degree curve. As long at it is corrected to 35 degrees or less in 2 months then Dr. Shoemaker is ok to continue with just stretching. In the meantime we are stretching and hoping we do not have to do serial casting!