No answers yet

I haven't posted about Colin in a few weeks. I thought I was doing it because I was waiting for more answers. Tonight I realized I haven't done it because I don't like what I'm hearing.

We had the sleep study: It showed mild sleep apnea both central and obstructive. What that means is his brain forgets to tell him to breathe at night at times. AND also at other times he tries to breathe but can't because something is blocking his airway. At this time they want us to just watch it.

We had a CT scan: That showed classifications and sever chronic infection in his sinuses. That resulted in a 30 day prescription of antibiotics. His chest CT scan showed Mosaic air ways in lower lungs and scaring in upper lungs. The Mosaic means that his bottom lungs aren't getting the air they should be. They aren't sure if they are fully destroyed or just damaged. The scaring at the top is from the constant pneumonia.  At this time the pulmonary doctor isn't sure where to go with this info.

We had a hearing test: It showed normal hearing except for the two highest sounds on right ear. This isn't a huge concern and they felt if he didn't have as much fluid build up in his head he would be okay. Right now just watch and maybe retest in 6 months to a year.

We had an appointment with the ENT: She said start nose spray twice a day to try to help the sinuses. She really didn't want to do surgery. She is hoping he will grow out of everything. (Right now I'm not really happy with our ENT at all and haven't been for about a year. I'm hoping at our next pulm appointment we can find a new ENT that fits the needs of Colin and our team better)

We had a speech eval: She was concerned about how he breathes when trying to eat. She doesn't feel he is aspirating on food. (She watched him eat). But she feel she can't help him at this time. She noted that he can't ever close his mouth and breathe. So to try to do oral exercises to strengthen muscles we would in a way asking him to suffocate himself since he can't breathe unless his mouth is open. So until something is done about his sinuses she can't help him. She feels there are issues but right now can't address them until other things like sinuses and pulmonary function is controlled.

We go back to see the pulmonary doctor in March. I'm hoping she has talked to a few other doctors and has a plan. She has talked about a lung biopsy, and also some other testing. I don't think March appointment will give us any answers but since we haven't come up with any other maybe we can try a few more roads.

For every step forward it feels like 2 backwards.

So that is the update on Colin. He still needs prayers. He needs prayers that the doctors on his team can find a cause or find the correct tests to run on him to get the answers. After 3 years of praying for this I feel defeated and at times really down. I do thank God that he is a trooper through it all. I will continue to fight and do what I feel is best for him until either we find an answer or he is old enough to tell me what he wants on his own.
  

5 year stats

I always enjoy looking back and seeing how much the kids weighed and how tall they were on each of their birthdays.
Yesterday Alyssa went for her 5 year check and did fantastic! She got three shots without a cry, scream or fight.
She was 46.25 lbs and 44.25 inches tall.

Arizona Vacation

We had our first true, out of the state vacation as a family of 4 in three years this past weekend. It was a wonderful vacation and the kids did fantastic!

It all started when the girls basketball team that I helped manage in high school was being inducted into the hall of fame in Chandler. I decided I wanted to attend. So then we decided to add a few extra days on and enjoy some warm Arizona sun.
We landed on Saturday and my mom picked me up from the airport and we headed to the induction while the kids got the luggage and made a stop at McDonalds.  Afterwards we met back up and went to see a few of my friends from when I lived in AZ.
 On Sunday we went to the Renaissance festival. The kids had a blast and Alyssa got a mermaid painted on her arm.
On Monday we went to an indoor play area and a see turtle aquarium.
On Tuesday it was the Wildlife zoo and aquarium.
On Wednesday we got an a plane and came back home to the cold.

Everyday we went from early morning to about 8:30 pm every night non-stop the kids got a few little cat naps in the car from one place to the other, but nothing big. And they did fantastic!! We had two very very small meltdowns from each kid but nothing big or that lasted very long. They were well behaved and seemed to really enjoy everything we did.
A few times throughout the trip Alyssa would lean over to me and say "Thank you for bringing me here". Since we have been home Alyssa has talked about going back every day.
I love watching the kids interact with my mom and step dad and brother. Since they don't get to see them often I always wonder in they will remember them, but each time it takes less and less time to warm up. Most of the time the kids wanted to hold Michael Michaels hand or Grandma's hand.
Even on the flights the kids did a good job. They are long flights and the kids sat still and didn't cause any issues on the flight.
I can't wait to have more vacations and enjoy them as our kids get older and enjoy more.

Dear Alyssa (5 year old)

Dear Alyssa,
   Today is your 5th birthday! Where has the time gone? I love the little girl you have turned into. You are smart, stubborn, funny and passionate little girl. You weigh about 45-48 lbs and are about 45 inches tall( I think you go to the doctor next week) You wear anywhere from size 4t to 6 depending on what it is and if it runs big or small. Most of your clothes are 5s. Your favorite thing to wear is dresses, but have started to add your own layers. Most days your clothes don't match but you love your outfit selections and are proud of what you pick out.
     You are in the preschool class at daycare. You have started to learn some sight words, and get very excited when you see one of those words in print. You can't wait to start kindergarten.
    You have become a picky eater and there are many meals that we cook that you refuse to eat, but your absolute favorite meal in b-bque chicken. You also enjoy all breakfast foods, corn dogs, fish sticks and roman noodles. You dislike mac and cheese and chicken nuggets (unless they are from McDonalds).
   You are the best big sister anyone could ask for. You love your little brother and care about him. At daycare you don't let anyone pick on him except for you.
   You have started not to like to get up in the morning for daycare, but have no problem popping out of bed on the weekends. On the weekends you get up somewhere about 6:30am. On week days when I try to wake you up about 6, you act like it is the end of the world.
    You are still in a car seat but we have started booster training and you love to ride in Daddy's car because he has the booster seat.
   I love to have conversations with you. You have so many ideas and opinions on how things should work.
There is so much about you I don't even think I could write it all down in one blog.
   I love you to the moon and back. I'm excited to see where this year takes you and to see you turn into a kid versus a toddler/preschooler.
Happy birthday big girl! Please stop growing so fast.

Love,
Mommy

5 year old Interview

What is your favorite color? Purple, Pink and Silver

 What is your favorite toy? Two Barbie houses

What is your favorite fruit? Oranges

What is your favorite tv show? Ariel

 What is your favorite thing to eat for lunch? Fish sticks

 What is your favorite outfit? My Ariel dress up


 What is your favorite game? Hide and seek

 What is your favorite snack? cookies

 What is your favorite animal? Hippo

 What is your favorite song? Frozen "Let it Go"

 What is your favorite book? Bernstein Bears

 Who is your best friend? Madelyn and Lizzie

 What is your favorite cereal? Frosted Flakes

 What is your favorite thing to do outside? Play in the snow

 What is your favorite drink? Water

 What is your favorite holiday?  Christmas

 What do you like to take to bed with you at night? My bear and my blankie

 What is your favorite thing to eat for breakfast?  Frosted Mini wheats

 What do you want for dinner on your birthday?  Pizza and chips

 What do you want to be when you grow up?  I want to be a cooker