"My Christmas Wish Came True!"

We have five new ornaments on our tree this year. I received them last year as a Christmas gift, so this is the first year we were able to use them. They are silver stars that say "WISHES" on the outside. You open them up and they say "DO COME TRUE" on the inside. Every year, each family member writes one Christmas wish on a piece of paper and you put it in your star. When we were writing our wishes, Hadley said "I wish that Brooke would get off the 'bentilator'." Totally unprompted and very sincere. So I wrote her wish on the paper, put it in her star and we hung it at the top of the tree "closer to God." Brian and I didn't share our wishes, but I'm pretty sure you can all guess what they were. When Brian saw Hadley on the day Brooke went to St. Louis and explained that we were going to start weaning Brooke from the ventilator, she screams "My Christmas wish came true! Brookie is off the ventilator!" She didn't understand that it would be a process and Brooke would still use it part of the time, but she was so excited for her sister. What a sweet big sister!

Well, a little bit has changed in the last week. I explained to you all that Brooke had been off for about an hour twice a day and doing quite well with that. On Thursday, I emailed Brooke's doctor and asked her what I should do to keep Brooke plugged in for the roughly ten other waking hours of the day. She emailed me back and said that maybe Brooke is telling us something. She gave me the go ahead to leave her unplugged for as long as she tolerates it and plug her back in for naps and of course during the night so she can get good rest. Last Friday, I unplugged her at 8:30 after breakfast and she was unplugged until 2:00 for naps. She took her nap and I unplugged her when she woke up and she was unplugged for four more hours!!!!! On Saturday, same thing. Today, same thing. Can you believe it? Brooke has been able to go five or six hours in a row and seems to positively LOVE it! She won't stop, won't sit down to listen to a story, do a puzzle or play a game. SHE IS ON THE GO ALL THE TIME! We still watch her very closely and this doesn't mean she won't have a set back and need a little support sometimes, but for the most part we are able to let her be free. Over Thanksgiving, Brian had said that maybe by Christmas she would be able to be off for a little while. I remember saying that I thought that was wishful thinking. I guess I was wrong and by the way, my Christmas wish came true too! And what a wonderful Christmas it will be.

I was reminded this week of just how precious life is and how quickly your world can be shattered. I want to urge all of you to slow down this holiday season. Kiss your children, tell them how much they mean to you, how proud you are of them, how you thank God for them everyday. Tell your parents you love them and are thankful that your children have such wonderful and giving grandparents. Make sure your family knows how much you care for them and take pride in the memories you share with them. Let your friends know you appreciate them. Please don't let this special time of year pass by without taking time to enjoy what matters the most. We hope you all have a blessed Christmas!

Calling All Super Wrappers!

So, I know I bragged about having all of our Christmas shopping done pretty early this year. Now I will admit that I have NOT ONE present wrapped. Yikes! Everything is sitting in Kami's room ready to go, but I haven't had the time (or motivation) to spend any time in there. Once I get started, it will go quick -- I just need a little push.


I'm a little behind with the blog. Maybe after the New Year, I will get into a more structured routine, but we'll have to see about that. It's super crazy around here!


The most exciting news this week is Miss Brooke. She is now able to be unplugged for about an hour each morning and an hour each night. She absolutely loves her new freedom. We had forgotten what a toddler can get into when you aren't watching. She has discovered the toilet, the trash, the pantry and her favorite -- Kleenex boxes. She is doing better each day with her wean. I am not going as fast as the doctors would like me to, but I want to make sure she is tolerating everything (and I'm her mom, so I can do what I want). What I do want is for someone to explain to her that she has to be plugged back in when it's time. If you ask her she shakes her head no and runs the other way. Is she telling us something? Who knows! Only time will tell, but we are super excited for her. She loves following her big sister around and they are really starting to "play" together and of course they have their shares of fights. We have to make sure they don't shut the door to Hadley's room when they are playing and we even put a jingle bell on Brooke's leg so I can hear where she is. When we unplug the vent, she wears a Passy-Muir valve which allows air in through the trach but Brooke has to breathe air out through her mouth and nose. This is training her body to breath the way it should. It's also known as a speaking valve, so she is really starting to explore the sounds her mouth makes. I love listening to her, even if she is screaming at me. I got to thinking the other day... Until now, Brooke has never been able to breathe without the help of some kind of machine -- oxygen, CPAP, or ventilator, so to say that we are happy is a major understatement. Her body is still "learning" how to do everything, but we are moving in the right direction. We have a video of Brooke hitting her vent with Hadley's pink baseball bat. Watch out! Don't get in this girl's way!



Kami had an appointment with a urologist last week, and she was diagnosed with VUR, Vesicoureteral Reflux (ves-ih-koe-yoo-REE-ter-al) Grade 3. This means that urine is backing up into both of her kidneys and her bladder isn't emptying completely, which explains why she continues to have urinary tract infections (UTI). There are five grades for VUR and she is right smack in the middle. Normally with a 1 or 2 you will just watch and wait. With a grade 4 or 5 you have a simple surgery to correct the problem. With a grade 3, you are "sitting on the fence." Do we watch or do we fix? At this point, we are going to give her an antibiotic each night and watch her. If she gets one more UTI we will go ahead and have the procedure done.

We would like to wish everyone a very Merry Christmas. This is absolutely my favorite time of year. Brian and I are truly blessed with three beautiful daughters, wonderful families, and great friends. Thank you to everyone who has helped us this past year.

I have many more pictures to post, but they will have to wait. One of my beautiful daughters is hungry and then it's bath time! I love being a mom --craziness and all!

The Longest and Most Nerve Racking 31 Minutes, EVER!!!!!

Hi everybody! It's Tuesday evening and my dad, Brooke and I are just returning from Brooke's appointment in St. Louis. We saw her Pulmonary doctors and oh what a happy day it was! Let me just start by saying they were all EXTREMELY pleased to see little miss Brooke walking down the hall to their office. She acted like she owned the place, and didn't let one person go by without waving at them. We started the appointment by updating the docs on everything Brooke has been doing lately, including unplugging herself constantly. After looking at her blood gas and watching her "sats", they decided it was time to unplug her and TURN OFF THE VENT!! I will be completely honest and tell you this scared the you know what out of me. I seriously felt like I wanted to puke. Yes we have let her play around unplugged but never officially with doctors and nurses watching. We unplugged her, turned off the vent and let her run around the office for 31 minutes. Yes that's right 31 minutes! That's the longest she has ever been off the vent at one time. She did great and showed no signs of distress and she was "satting" 99 when they checked and her blood gas was great, all with no vent. I, on the other hand, was so nervous and was watching the clock the entire time. The only reason she was off for 31 minutes was because I wanted her plugged back in. At one point, my mom called and asked how things were going and my dad informed her that "she" was hyperventilating and needed oxygen -- he was talking about me. Needless to say my mom wasn't amused.

So, the plan is to take her off for 30 minutes twice a day for two days. In two or three days we will unplug for 1 hour twice a day and so on and so on until she is off for the whole day. I have no idea how long this will take, but oh what a wonderful Christmas present. I already know that she will be taking a bath with no tubes tonight. Boy do I have big plans for this girl. More later, but I wanted to let you all know how things went. As I am typing this, she is unplugged and loving her new freedom. Please continue to keep Brooke in your prayers during this nerve racking time in her mom's life :) Happy Tuesday! God is Good!

Typical Tweryon Craziness!

Here's a sneak peek of our family pictures......