Boots and Bar - BNB

Today was a big day! We got to take off Icem's casts that he has had on for three weeks. His skin is very sensitive and he didn't want his legs touched. On the bright side his feet looked great! I got to put his special lotion on his legs and feet. It is going to take awhile for it all to shed but it was nice to get started.  Mom hunted down the perfect onesie for the occasion! He is our little superman.

Garret is now up in Juneau and back to work so Mom was able to go to the appointment with me. We also picked up Grammy Carol on the way. It was so nice to have both of them there to support. We needed all three sets of hands at times!

Dr. Mosca is in India, so his nurse Sue showed me the stretch Garret and I will need to do on each of Icem's feet three times a day. You use the heel of your hand to stretch his foot back and out. We are going to be in 23 hour wear with the boots and bar, leaving one hour to have them off. I was under the impression we would do an hour free time at night and check his feet a couple other times during the day. However, Sue suggested two 15 minute chunks and one for 30 minutes. That way we can stretch and check for marks. I am sure we will figure out a schedule that works best for us. The thirty minute time will be used for play and baths.

The orthotist, John, came in to fit Icem with his boots. He was very kind and informative. He started Icem in size 00 but it was too small. Then we tried size 0. He decided to move him up one more to size 1. I was very surprised, I guess he has big feet. Also with us not coming back for three months it give him room to grow. The boots are gray and have three straps. They buckle on the inside since it is easier to strap them that way. John showed me how to strap the foot back with the middle strap first, then the toe and top strap. Finally, to come back to the middle strap to make sure it was tight enough. I know this will take awhile to get used to. Icem was not excited by the whole process. Who can blame him, his skin is sensitive and he had some bruising from the casts. My boy was so brave! We snapped the bar in which was adjusted to shoulder length. Then I put his cover on (made by 23rd Ave. Bar Covers) and we headed out. I made an appointment for March 18th, during my spring break. It sounds like the next appointments are a little more flexible. This date is before his three months of 23 hour wear is up, but it makes it so I don't have to take another day off of work (days I don't have). The hope is that he will be approved to go down to 12 hour wear a few weeks after that appointment. Sue said that we will have appointments every three months for the first two years, then every 6 months until he is four. Thankfully my insurance covers two flights a year and we are down enough visiting family and the other two we can work into visits I would think. 

His BNB didn't fit in his carseat. I was disappointed as I had read on the Clubfoot site that the Chicco Keyfit should work. We put a blanket under his feet to raise them up high enough to clear the sides. We will either keep doing this as we don't have far to drive in Juneau, or move him into the convertible carseat we have at home. 

We gave him a few doses of Tylenol today to help with his sensitivity and discomfort. He took a nap shortly after getting home, I took one at the same time. When we woke up I took his boots off, then socks. His skin around the ankles is the worst. It is going to be hard to tell exactly what is happening with his skin until it all sheds. It looked like he had a small mark/opening. I put Aquaphor on it, rubbed foot glide on both ankles and replaced his socks. Putting the boots back on was a trial for sure. He was very upset and I re-buckled one of the shoes after not getting the tongue quite right. I didn't get his heels down quite as good as before and his toes don't seem as far out but I am trying to have grace with myself in this process. I beat myself up very easily. If it wasn't perfect tonight, we get to try again tomorrow. There are holes in the back sides of the boot that allow us to see where his heel is. The hope is to get it as far down as possible. It is so hard to know what is the right fit but I am sure it will get easier. I feel for the little guy! 

I was able to get him to smile in his swing but he didn't want to go for tummy time. His smile melts my heart.

I am sitting typing this as I've laid him down for the fifth time tonight. We have just gotten on a much better schedule where he has slept 8-10 hours at night only waking us to plug his pacifier back in every once in awhile. Tonight he has been waking up and I would assume wondering what exactly is on his feet and feeling his sensitive legs. I have been able to put him back down each time so he is being a trooper! Holding him is a bit trickier but as his boots get more comfortable I am sure he won't mind being held different ways. 

Today has been bittersweet. It is nice to move onto the next step, but it brings a whole new set of worries and wonderings. Will he get sores/blisters? What will I do about them? I have items such as molefoam and blister bandaids as recommended from the Clubfoot site. I also have the email and phone number of both the nurse and orthotist. They are there if I need them. I guess my worry comes from being so far away. It isn't just a simple drive away. Here is to praying for a smooth journey and being thankful for the team we have. 

Icem and I fly back to Juneau on Thursday. We can't wait to see Daddy! We are flying midday and in preferred seating. Hopefully the few days are enough for him to get a little more comfortable.  I am able to be his main caregiver until the end of February which I am so thankful for! Both sets of grandparents have plans to visit this spring which is exciting. Our parents are the best you could ask for!

We are so grateful to my parents for putting us up in their house, providing what Icem needed, being amazing hosts and such a help during this journey!  Thank you Gigi and Pops! We will miss you!

Carol and Ernie for hosting us in Darrington when we needed it and doting on Icem, we love you!

Also a big thanks to Uncle Gavin and Aunt Kati for letting us borrow their car! So helpful to have a means of getting around while down here and made it so we didn't have to ship our car. 

Finally, to our Juneau Tribe for helping from day one when Icem came early and surprised us all. Bringing hospital bags, helping my kinders transition, being flexible with Garret's work schedule. Then, taking care of our house and puppies. Thank you so much!

23 hour wear should end the first week of April if all goes according to plan. I will do an update then! After that, Icem will wear his boots for 12 hours a day until he is four years old. We are already planning a big celebration!

Happy New Year from our family to yours! This one will be filled many firsts, blessings and challenges.