"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......

I Have Time to Type....

All three of the girls are sleeping, so I thought I would type a few updates. The last few blogs have been mostly pictures and not a lot of information.


Brooke goes to St. Louis for a Pulmonary appointment on December 8th. She is now down as low as she can on her vent. At this appointment, the doctors will talk to me about our plan for the wean. When I talked to them a few weeks ago, they mentioned taking her off and getting a blood gas (a test to measure the amount of carbon dioxide you are exchanging??? She's had a million so you would think I knew what it did!) She is unplugging herself A LOT during the day and is really doing much better than she used to when she would unplug herself. She is also able to stay unplugged for longer amounts of time. I think the most we have done is about 20 minutes. We had her annual review last month and she did exceptionally well. In fact, she was kicked out of occupational therapy because she didn't qualify. If you want to get technical, she didn't really qualify for physical therapy or developmental therapy either but because of her vent, she gets it. I wasn't giving up physical therapy for anything. I can do OT with her but Sue (her physical therapist) does WAY more than I could. We have been taking Brooke everywhere lately. We went to the Rochester football game and Disney's Playhouse Live. She absolutely loves seeing other kids. I don't know who she liked more, Mickey and friends or seeing all the other kids that were there. She just wants to go, go, go and hopefully soon she will be tube free (at least during the day)! About the picture...she loves her bibs. She needs one to fall asleep and you know when she is tired because she goes and gets a bib. This particular day her baby needed a bib too. She did this all by herself. It was too cute not to snap a picture of!



On to Kami Lu... She had a high fever the other morning and with tiny babies that makes me very nervous, so I ran her to the ER. They found a urinary tract infection which was pretty surprising to the doctor, because she is so young. He gave her an antibiotic and we made an appointment with our pediatrician the next day. He ordered another culture of her urine a week later and found that she still had an infection. He recommended we have an ultrasound done of her kidneys and her "plumbing" system. From the ultrasound, they found a slight abnormality which means she probably has this reflux something or other (I can't remember the exact term). It generally corrects itself, but he wants to do one more test to be sure. This test will look at her kidneys again, but will look to see where her urine goes. It's possible that it is backing up into her kidney, causing the slight abnormality. Sensing my frustration (crying), he reassured me that this was more common than you would think. She has another culture next week, because she has to be clean for the next test. Let me just tell you it's not easy getting urine from a baby--can't have her pee in a cup! That was an experience. I really think I could become a pretty good nurse! About this picture... Can you find Kami? This was her sister's doing.






Hadley is well, Hadley. She definitely keeps me entertained each day. Our little darling has started wanting to wear dresses all the time. I guess she inherited this from me :) Ha! We had to put skirts and dresses on her Christmas list because she only has a few. She is really enjoying school and is super excited for Christmas. "Buddy" the Elf (From Elf on the Shelf--she named him Buddy) is making his first appearance this week and will be watching her until Christmas. Maybe he can get her to eat her vegetables, cause I sure can't.

I thought you might all like to know that Brian and I are officially DONE Christmas shopping. Yes, you read that right! We headed out the other night with lists and a highlighter in hand and after a few hours, found all but two things on our list. I ordered the other two when we got home. Gotta love online shopping. It feels really good to know that I will not have to make a last minute trip to pick something up. Also, we had family pictures taken last week and they turned out really cute. The ones of the girls are even better. I will post a few next week when I get the CD. I am so excited! Have a super Thanksgiving. I am so thankful for my husband, our beautiful children and our wonderful family and friends. Enjoy your time with your family.

Daddy and his Little "Deer"

Well, Brian didn't see a deer this morning in the woods, but he definitely has three sweet "deer" at home! Here they are with their daddy after he got home from hunting. Pretty cute in their camo, huh?

Lots of Girlie Fun!

Ok, I'm a little slow updating the blog, but I do have lots of pictures to share this week.

Hadley was the flower in girl in Brian's cousin Tracy's wedding. Hadley was so excited to wear a princess dress and go to a party! On Friday, I took her to get a mini manicure and pedicure before the wedding. She loved putting her feet in the purple water but she did not love the lady touching her toes! Check out these pics of our big girl!

The Rehearsal Dinner

Tracy and Mitch got Hadley a gift card to Build-a-Bear and the flower girl dress. She is so excited to pick out an animal to make. What a cute gift idea!

Saturday morning, I took Hadley to get her hair done with Tracy and her bridesmaids. Hadley loved this. She couldn't stop looking at herself in the mirror.

Mitch with Hadley, Madigan and Seth

Running off some energy

Tracy and Mitch with the Flower Girls and Ring Bearer

Hadley and Seth had a great time playing together while we waited for the ceremony to start. They were going on a bear hunt and really got along well. At the reception, Seth came up to Brian and asked "May I talk to Hadley please?" Oh my goodness it was sooooo sweet. Brian was pretty impressed.

Ellie and Brooke

Where is she going?

Hadley fell asleep on the way to the reception.

Kami slept through much of the reception.

Brooke yelling at me. She has a lot to say :)

I don't have anymore pictures from the reception because we were busy chasing our daughters around! Let's just say we were all tired at the end of the day, but what a fun day it was.

A Trip to the Airport

My brother Stuart and his wife Jackie flew home during the first week of November. One of Jackie's friends was getting married and she was a bridesmaid. They flew in on Wednesday and I decided it would be fun for the girls to surprise them at the airport. We loaded up Nana and Papa's van and set off. Here are a few pictures from the airport. We had to wait about 20 minutes before they arrived. Hadley made friends with a lady waiting for her daughter. Her exact words to this woman when she told me I had my hands full. Hadley said "It's ok, in a few months my mom will get through this." What?!?! Where did she hear that?





These next two are of Brooke "hiding." She's covering her eyes in one and crouching down behind the counter in the other. I had to crouch down because I was too tall and Stu and Jackie would have been able to see me, so Brooke thought she needed to hide too.

The best part is... I unplugged Brooke so she could walk out without her tubes (Stuart and Jackie had not seen her walk yet). Anyway, I unplugged her and as her and Hadley were walking out to surprise them, Hadley tripped on something (nothing) and fell down. As she was laying there, Brooke wasn't paying attention and fell on top of her. Of course I didn't have my camera for this, but it was priceless. They are both laying there on the floor of the airport. It was like slow motion. SURPRISE! Stuart runs over to help them and Brooke gets scared, starts crying and won't let him help. Here I thought it would be so cute for her to be walking up to them and the first thing they see is my girls laying on the floor!

Their visit wasn't long enough but they will be back for Christmas and will be here for ten days!