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!