California Trip: Post # 5 Aquarium

These photos were taken at the aquarium on the last day of our trip. We got to spend the day with the Weaver cousins.

I’m not sure what this look is about.

Katelyn wanted to push instead of ride.

Katelyn is having a melt-down.

Blake found a new favorite friend. He likes to show off how strong he is buy carrying people.

Blake just touched a shark.

After the food ran out this bird latched on to Derek’s finger. He was really tough because it took a minute to get the bird to let go.

California Trip: Post # 5 Disneyland Day 2

I told you we took a lot of pictures. We’ve been back for a while but we are still posting them.

This is Blake and Derk's new favorite ride but they were a little nervous. Can you tell?

Top Ten Reasons Why Our Dad's The BEST!

10. He Helps Us A Lot (Blake)
9. He Doesn't Hurt Us (Derek)
8. When He's Asleep He Doesn't Kick Us (Blake)
7. He Makes Food For Us Sometimes (Derek)
6. He Plays With Us (Derek)
5. He Plays Video Games With Us (Blake)
4. He Makes Up Stories Before We Go To Bed (Derek)
3. He Tells Us Jokes (Derek)
2. He Prays For Us and Gives Us Blessings (Derek & Blake)
1. There Isn't Anything He Isn't Willing To Do! (Mom)

Happy Father's Day! We all love you and think you're the best dad!

Botox for Brandon

We've recently been introduced to the world of botox, unfortunately it is not for the wrinkles that are starting to appear on my face. Relaxing muscles is helpful for many different reasons and managing tone is one of them.

An occupational therapist at Shriner's Hospital recommended botox for his left arm to increase function and help him be able to use his left hand better especially when he uses his walker.

So we met with a physiatrist (a rehab doctor) who agreed that he needed botox. She introduced me to a new aspect of Brandon's care. As he continues to grow the tone in his left side will likely increase. And there are many ways to manage this tone, but botox is the best option for him right now.

The neurolgoist explained it this way: the brain is like the gas for your body and the spinal cord is like the brakes. So with the brain not working on his left side he only gets brakes so he gets too much tension in his muscles.

Friday we went for his first injections. I had no idea what to expect becuase we opted not to use sedation and so they told me to be ready to help hold him down and give him pain reliever prior to the appointment. So I was a bit apprehensive about it but it wasn't that bad. There were 2 staff members and I holding him down, the doctor did the injections and there was a music therapist there to help distract him as well. The whole thing lasted no more than 5 minutes and I think it went fine. The botox only lasts 3 to 4 months. So we'll have to evaluate how effective it is in helping him. It can take up to 2 weeks to see the results, but as we were walking out of hosptial on Friday we could already see an impact.

I never cease to be amazed at all he has figured out how to do. He has conquered so many tasks that we didn't know whether he'd ever get. His physical therapist's visits have become show and tell for me because in the two week period of time between our visits he has made so much progress that she is in awe. He will do great and we are confident of that.

Can You Fix Something That's Already Perfect?

Yesterday we met with the plastic surgeon about our beautiful Katelyn's lip. The hemangioma that developed on her lip shortly after her birth has been treated about as much as it can be. She has been on systemic steroids for it, her lip has been injected with steroids and then the it almost completely resolved after starting her on a propanlol, a blood pressure medication which was very recently discovered to help infantile hemangiomas.




Although we rarely notice what is left of the deformity on her lip, we know others do and that it will be a problem in her future. People sometimes will comment that she has something on her lip thinking we just need to clean her face and other kids will sometimes try to pull it off. The older she gets we know this will be an even bigger issue as she becomes more aware of it.




So with the recommendation of our wonderful dermatologist Dr. Parkinson who cares a lot about Katelyn, we went to see a very well respected plastic surgeon who has many years of experience. When we arrived at his office Brent almost immediately noticed several sculptures of Brent's Great Uncle Avard Fairbanks in the waiting room. It was a pretty impressive collection and then we connected the doctor's name to the collection. We were there to see Dr. Grant Fairbanks. So he turned out to be Brent's dad's first cousin. Such a small world! He knew Brent's grandpa as Uncle Ellis and commented on his love of life. It was fun to talk Fox family history with him for a few minutes. Grandpa Fox was so proud of his sister's husband. He traveled with the two of them to Italy when he was a young man while Avard was studying sculpture. It was clearly a high point in his life and he reminisced about it frequently.





So the son of the man who created sculptures like this, now sculpts bodies in the flesh. He thinks the only course of action is to surgically remove the hemangioma from Katelyn's lip. He is unsure about the timing of it because while her youth is in her favor as far as healing and scarring goes, the bigger she is and the more lip she has to work with, the more successful he feels it would be. So he wants to see us back in a month or so and then decide. He was very clear with us that surgery creates scars and that is what we should expect. I don't know where this is headed, but I feel like we are embarking on a very significant journey in our little girl's life and the weight of it in my chest is palpable. We have to start seeing what we don't see and don't want to see.

Conquering the Indiana Jones height requirement

One of the highlights of our recent Disneyland trip was Derek finally making it on the Indiana Jones ride. He was super excited about it before our trip in October but he was denied twice then. We tried hard to get him on by stuffing his shoes with napkins and putting his hood up on his hoodie with a diaper in it. Not only were we denied, we were also discovered in a slightly embarrassing moment. He and Blake (who also didn't get to ride even though he is tall enough) were good about it but definitely disappointed.

When we decided to go back we measured Derek at home and he was an inch taller than the required height. So we confidently walked first to Indiana Jones our first day at Disneyland and he wasn't tall enough, by an inch! I have no idea how our measurements wee 2 inches off! We tried again later that day with the napkins, but it was still a no go. I seriously think their measuring stick is off. Every time I measure him he is tall enough, but that doesn't matter to the guy in charge at the ride.

So our second day we were more prepared. We took his Grandma Fox's old inserts and folded them over and added more than an inch to each shoe. He could barely keep his heel in his shoe. We went there Friday and got a fastpass even though he didn't measure up still. Then the ride closed but Friday late afternoon we finally had success. A few more napkins and some more training on how to stand up as tall as possible and we got on! It was so close there were people in line congratulating him. We had so much fun. They were both really excited and it is such a fun ride.

Here is what was in each of Derek's Shoes - about 8 layers in all.

California Trip: Post #4 - Beaches

These guys were playing in the water near the pier.