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. 

Tenotomy and Dedication

Friday was Icem's tenotomy appointment. Thank you for the texts and well wishes! It is so nice to have so much support! We once again took off his casts and gave him a bath. He is starting to do so well during bath time! Then we gave hime Tylenol before heading to Seattle. His skin under his casts is bad but the rest of his body is responding so well to the lotion.

This week we thought to measure him before the casts went on. He is now 23 inches. The nurse Sue came in and put a numbing gel on the back of his ankles and covered them with saran wrap and elastic wrap. I believe we were one among many there for a tenotomy that day as Dr. Mosca had missed last Friday. I heard quite a few upset babies. The procedure itself was very quick. He had a very small scalpel he used to slice the tendon. We asked how the achilles tendon would regenerate. He mentioned that the tendon sheath was still there which would help the tendon reconnect, but long enough for dorsiflexion of the foot. After making the cut he used a syringe to numb/medicate the area. Then he applied gauze and elastic wrap and had me hold pressure on the ankle. Icem was not a happy camper. The same steps were repeated on the other ankle. We were able to comfort Icem while the area was allowed to clot.

After about 20 minutes Dr. Mosca came back with the casting specialist and applied his casts. His feet are now at the angle they will be in his boots and bar, they are also flexed. It is so amazing how fast this went and how well he is doing through it all.

Don't worry, he was strapped tight on the ride.

We gave him more Tylenol after the appointment and twice more that night. He had a pretty rough night, I am sure some was due to his discomfort.

His smile melts my heart!

He loves his giraffe!

Sunday we got up early and headed to church for Icem's dedication. It went so well! Paul and Britta, the pastors at our wedding, led the dedication. It was so special. I love the idea of a dedication instead of a baptism. This allows him to make that decision for himself later. He slept through it except for the part where Britta held him up for the congregation to see. He made his "little old man" face for everyone, opening his eyes to check everything out. It was so adorable. We had quite the crowd to watch! My parents, Garret's parents, Trey, Kyler, Nana, Uncle Colin, Aunt Kathy, Uncle Brian, Aunt Merri, Auntie Barb, Steve, Kim, Jesse, Ashleigh, Camden, Branton, Kathleen, Short, Leann, and Chris. I LOVE MY FAMILY! It has been such a blessing to be home. Everyone is always so supportive of each other, it is so nice to have that for Icem. Lindsey, Whitney, and Kenzi showed up at the party to support us too.

Fifth Cast and UW Apointment

Yesterday was Icem’s Fifth casting appt. His feet are looking so great! I can’t believe how fast this first phase has gone. His poor skin is so dry under the casts. I can’t wait to put lotion on him. They don’t want us to put it on between casts because it can cause them to slip and need to be redone. He liked his bath this week as well.

Look at those straight feet!!

Someone was smiling today! 

Icem weighed 11 lbs 2 oz at the appt, which means he put on 17 oz in one week! You can really see it in his face. The doctor was happy once again, Icem wasn’t so much. He was pretty fussy during casting.  We were given a Tylenol prescription for him to take before and after the tenotomy on Friday. 

After our appointment Icem got to meet his Great-Grandma Dona.  

Later we watched the Seahawks with the Reece family. Go Hawks!

Today Garret, Icem, and I met with Paul and Britta, the pastors doing Icem's dedication this weekend. It was great to catch up with them. They officiated our wedding and now get to come full circle with our family. 

Later, Pops and I drove Icem down to UW Medical to see Dr. Sybert. She has dealt with Ichthyosis for a very long time. We have been using the same lotion that my brothers use on their skin with great success. He has baby skin again on his torso and arms. His head is almost done shedding too. She said his skin looks great with what we are doing. It isn't necessary to do the genetic test, we can be pretty sure he has it and keep treating it with the Amlactin lotion. She did say that if we needed further assistance they could get us into the Seattle Children's Dermatology clinic. Overall, I felt good about what we were doing for Icem, it will just be a part of our routine. 

 After our appointment we ate at Sakuras to celebrate Nana, Icem's other Great-grandma. Icem smiled quite a few times, which was so fun! 

Dad needed a bottle...

We are raising a genius! He held his own bottle ;) Look Mom, no hands!

Another update Friday, wish us luck with the tenotomy!

Fourth Cast

Yesterday was our fourth casting appointment. We tried to meet up with a family I had met on the Facebook clubfoot group but it didn't work out. Their little boy turns four this week and he is done with his boots and bar. It has been nice to see their journey end positively with our doctor and to see that this is just one phase in our boy's life, it does not define him. This will end one day, so until then we will work through the process with a positive attitude. 

Once again we unwrapped Icem's casts. His legs are extremely dry and the top layer is cracking. We are thinking that he most likely has a skin disorder (I use this term lightly as it is not serious, just a nuisance) that runs in my family. It is called x-linked ichthyosis and I am a carrier. I had the lab taken when I was pregnant so I would know if my children may have it. Females are carriers and males show the disorder. Basically it means that males with the disorder don't shed their skin the same way we do and need a certain type of lotion to help this process. Icem started with normal newborn shedding but after our doctor looked at his legs before casting this week, he said this degree is not normal and assumes he has the disorder. We are going to Seattle Children's dermatology department doesn't have an opening while we are down here, so we will try to get him tested for sure and find a dermatologist to ask about current lotions and treatments to make sure we are on top of it. I know it isn't a big deal, and once again there are much worse things. I just can't help but feel bad passing yet another thing onto my son. This is something he will deal with his whole life. While not serious, it will be a constant annoyance. I am just hoping it doesn't make boots and bar worse for his feet. I also can't wait to get his casts off so I can start applying lotion to his poor legs. For now they must stay dry through this phase. 

We always joke in our family about the strange things that plague us. Clubfoot is just one more strange occurrence. I am so proud of how well Icem is doing so far!

Below is a picture of his feet after taking off this week's casts. They have turned so much! His right one is tighter and likes to curl back to the inside, but they have made so much progress.

I love the time I get with his free feet and legs each week. I get to kiss them all over and hold him the way he loves to be held, with his legs tucked up under him. 

This appointment required quite a bit of stretching to Icem's feet which he didn't like. We used sugar drops along with his bottle to help calm him. His left foot is where it needs to be after this cast, but the right is still a little tight. Dr. Mosca gave us good news at the appointment. Only one more cast before his tenotomy. The nurse is going to call us this week to schedule it. It will be one of the next two Fridays. We are so excited as this is one step further in his journey and puts us back to Alaska in January!

In the picture above are his fourth set of casts. I can't believe how much his feet are turned out this time. We used Tylenol this week as he seemed more uncomfortable than usual. But today he is a happy baby :) We got in some tummy time today and his casts, then boots and bar are going to help him roll over eventually I think, they seem to give him momentum.

Thanks again for following our wild ride!

3rd Casts

This process seems to be flying by! We headed down for our third casts today. Below is a picture of how his feet looked after taking off his second casts. A lot of progress again. I love taking them off and kissing his feet, I can't wait until they are off for good! 



Weekly bath:


Dr. Mosca was still pleased with his progress this week and said it is still looking like five casts before the tenotomy procedure. This would mean going home with his brace the first full week of January. Below is a picture of his third casts. 



On the way home Garret had some business in Maltby so we stopped at the Maltby Cafe. Icem wanted a treat so we got the biggest cinnamon roll I have ever seen! We highly recommend the food, it was all delicious!


Thanks again for following our journey. It has been so positive so far, we can't wait to see what the future holds for our little guy!

Second Casts

Garret flew into Washington yesterday. It is so good to have him home! Before heading to Seattle, we  were able to take Icem's casts off and give him a bath. 



The difference in his feet was cool to see.

Last week:



After one cast:


We drove down to Seattle Children's together today, Garret wearing his Coug gear into "enemy territory" as he calls it. Once again, surrounded by sick kiddos checking in, we felt so blessed that this was the only thing our little guy was dealing with. 

Before his doctor came in we were able to get his weight. 8 lbs, 11 oz. This little guy is gaining each week which is so great to see. Dr. Mosca came in and looked at his feet, testing their flexibility. He told us he was very happy with how they had responded. He thought that instead of the 8-10 casts he quoted us last time, that Icem may only need 5 before his tenotomy. This could change, but for now it was great news! 

Once again we fed him while the casts were applied and he was a trooper. He even fell asleep at the end. 

2nd Casts:


After getting his casts we were able to catch up with Garret's friend Eliza  from Darrington who is completing a residency at UW Medicine, and her son Cohen. It was so nice to see a friendly face. They even brought Icem a book. 



Thank you to everyone following our family's journey through this clubfoot treatment process. We appreciate your love and support!

Casting Begins!

Mom and I drove Icem down to Seattle Children’s today. We were early so I nursed him in the car and we headed to check in. The check-in process was quick, and they called us back on time. Once back in the room Icem was weighed and measured. He was up to 8 lbs 5 oz! Then, Dr. Mosca, the orthopedic specialist came back with his PA and a visiting doctor from the UK. After looking at his feet he let us know that Icem’s were “severe” which meant that instead of 4-6 weeks of casting, they could take 8-10 weeks. We are hoping and praying for less if possible!  We had brought a bottle to feed Icem after casting, but upon the doctor’s request started to feed him in the room.

They ended up casting him while he drank the bottle. Dr. Mosca and the PA stretched his feet for about a minute, then held them in place while a nurse wrapped the casts. They wrapped the bottom of the casts first, holding the feet in place while they dried. Then they wrapped the tops of each cast. Icem finished his bottle just as they were finishing. We changed him and held him, then headed home. He did well on the drive home, only crying twice. Once we got home we changed his first casted poopy diaper (he hasn’t been very regular so we were worried about the casts giving him issues, but apparently not!) We also quickly discovered the usefulness of the baby leggings. They protect the casts from poop and pee. Also, they are helpful in creating a soft surface for those of us holding him.

Overall our first experience was positive. We are hoping for a shorter casting time than predicted. There weren’t any tears from Icem or myself during the casting process which was more than I could hope for. We were very thankful to have Gigi there to help! We talked to dad soon after. Now to see how he does this first week with casts. Dad will be back in town on Sunday and will get to go to the second appointment with us. We get to unwrap the casts before heading down. The plan is to remove them and give him a bath. Wish us luck!