Cabin Fun!!!!

We had our family reunion with Trevor's family at their cabin last week. We had a great time spending time with family, enjoying the outdoors, going into town in West Yellowstone, enjoying Arrowleaf ice cream, going to Beauty and the Beast at the Playmill, floating Big Springs, playing with cousins, eating lots of yummy food, and just hanging out.

 

 

 

Inspiration....

A fellow CHARGE mom posted this and I just bawled like a baby watching it!!!! This is exactly the type of things I worry about when Laynie gets older and I want her to feel excepted and loved by not only her family, but also her peers. Rachel is such an inspiration and a beautiful girl. You will definitely want to check it out. If you don't have time to read it all then scroll down to the bottom to at least watch the video and don't forget your tissues:)

 

http://catherine-allen.com/when-different-is-awesome/

Having fun and random stuff...



There is nothing sweeter than a sleeping child. He still loves his buddies:)

It doesn't get much better than swinging on daddy's lap!!!!

Meet Molly..... she showed up at our house last Sunday and became our new house guest for a night. We couldn't find her owners, so she got some food, water, a bath and a place to stay for the night. The next morning we finally found her owners:) She was a sweet dog and I actually kind of miss her!!!

We went to the splash park with our friends. The kids had a blast. It is so fun to watch them have a great time!!!!

Weeeeeeeeeeeeee......

 

The kids also loved the carousel. Laynie loves horses, so she was really happy to be sitting on one!!!

These boys have been friends since they were born. This is them 4 years ago at the same carousel!!!! So cute:)

FAMILY PICTURES

 While we were in Arizona for the CHARGE conference, we got our family pictures taken. Another CHARGE mom (Catherine Lacey Dodd) is an AMAZING photographer and we were lucky enough to get in a quick session with her. It was last minute so we don't have perfectly matching outfits, but I LOVE them!!!!

catherinelaceyphotography.com

Our cute little boy. He was a bit of a stinker during the photo shoot, but of course we still got a cute one of him!

Our beautiful baby girl!!!

Me and my love!!!

Me and my beautiful mom who was in Arizona with us!!!

 My favorite..... this one makes my heart melt every time I look at it!!!!! It also shows their relationships so well. Drake is so sweet to his sister and it shows how excited Laynie is that she is getting a kiss from her favorite person in the world!!

Fun stuff, therapy, and blenderized diet

It's so sad that summer is coming to an end!!! It has been pretty hot lately and the kids have had fun playing outside.

The city was flushing the fire hydrants in our neighborhood and the kids had a blast playing in it!!!

My dirty girl doing front- rolls in the front yard.

My two favorite boys! I just love them to pieces:)

My grandpa turned 80 and we had a little party! He is one good looking 80 year old.

When Laynie turned 3 she graduated from the Infant Toddler Program in our state. It is our state's early intervention program which provides therapists to come to your home from birth until 3. She has had occupational therapy, speech therapy, physical therapy, and a deaf mentor. Some of them have been coming since she was born. We are still privately keeping occupational therapy and speech therapy, but it is crazy that she is 3 and graduating from the program. We made these cute things for her therapists...

Speaking of therapists, I think Drake gets the gold metal for #1 therapist!!! I can't even begin to describe what he has done for her. Laynie's ENTIRE day consists of following her brother and trying to do EVERYTHING he is doing. She is practically on top of him all day long. He tolerates her being by his side all day very well (most of the time). I know she would not be doing as well as she is without the help of her big brother.

Another big thing that has happened lately is changing Laynie's food a little. Not many doctors or dieticians are supportive of the blenderized diet (using real food and blending it into a puree for a feeding tube) because it is a lot of work and harder to count calories. We haven't had much help from the dietician we have been seeing and so I have just been figuring it out by myself and with the help of other CHARGE moms. About 2 years ago I started adding a little bit of baby food to her formula and it magically helped with her vomiting problem (she used to vomit after 90% of her feedings, even with special prescribed formula).

Anyways, we saw a dietician here in town and she was so helpful. She has never helped a patient with the blenderized diet before, but she was willing to put in some work and help us figure out what we needed to do to decrease more of Laynie's formula and add more real food. So, now we only use 6oz of formula in her total day time feedings and the rest is baby food and oils. Eventually we will switch to more real food, but I need to get a vitamix blender first. After switching everything, I have been able to eliminate one of her feedings during the day and add more volume to the other 4 feedings. It has been so life-changing for all of us. I feel like all we do is feed Laynie and this has helped a ton!!!! 

YUMMY!!!!

Ice cream party!!!!!!!!!!

We had an ice cream party for Laynie this year. It was so much fun and she loved every minute of it!!! She got spoiled and had a great time at her party. She loved licking the ice cream!

She got a cake from icing smiles, which is an organization that makes cakes for children with life-threatening medical issues and for their siblings!!!! A very nice baker in our area made this amazing cake for her!!!

Happy 3rd Bday Laynie

Another free digital slideshow by Smilebox

Dear Laynie, I can't even believe that you are 3!!!! It is crazy that you are growing into such a big girl. On the other hand, it is hard to believe it has only been 3 years since you came into our lives. You kind of turned our lives into chaos but you have definitely changed our lives for the better! We all love you and admire you so much. I can't even explain how proud I am of you!!! This past year, you have done some amazing things and have progressed so much. It has been amazing to watch. You really are a very special and unique little girl that has a passion for life. I don't know anyone more happy to be alive than you. You deal with a huge amount of challenges and you don't let them get you down at all. You are ALWAYS happy and I LOVE that about you. I don't know anyone who doesn't smile when they look at you. You truly have something very special about you. Looking back at your other birthdays I remember thinking how hard those years were. Looking back at this year, I don't feel that way. Of course you have had your far share of hard times, but overall you have done awesome. You learned to walk right before Christmas (at 27 months old). This was much sooner than expected and we were thrilled for you!!! Of course it isn't easy for you to walk because of your balance problems, but you keep amazing us with how well you are doing. You can now walk on grass which has been super hard for you all summer. In the spring, you got rid of oxygen during the day. This has been such a huge blessing. I can't even imagine chasing you around all day with the o2 hose with how active you are now. One day your body just decided it was strong enough and I can't even tell you how happy we all were. It is so much fun to celebrate those types of accomplishments. You had your cochlear implant surgery in April. This was a big surgery for you and you did so great!!! It has been so exciting to see you hear for the first time. It has been slow, but you are still improving and I get a huge SMILE every single time you respond to me saying your name. It is AMAZING!!!! You are communicating with sign language more and more. You always sign, "I love you" to your daddy and I know it makes his day every time you do it. You are now running and doing things that any other typical 3 year old does. You try to keep up with your brother and you love him more than anyone. I just want you to stay how you are forever. I never want you to experience a bully or feel bad because you are a little different from everyone else. I am so proud of you and I hope you know that forever and ever. I feel like the luckiest mom in the world to be your mom. Seriously, you have taught me more than anyone else has and you are only 3. You are my little hero and I hope you have another AMAZING year. Your daddy and mommy are cheering you on and we love you so, sooooooo much!!! Happy Birthday Miss Laynie Lou!!!!! Love, Mommy xoxo

Cochlear Implant Update

It's been awhile since I have done an update on Laynie's cochlear implant. She had a few appointments yesterday in Utah. One of them was an audiology appointment. I had noticed a regression lately in her hearing. She has been taking off her headpiece and hasn't been responding as well. During her appointment we figured out that her headpiece has been going on and off. It intermittently was not working. We got her a new headpiece and changed the settings by creating a new map for her and she did pretty well. She went in the sound booth and had a major improvement since the last time we were there. She was hearing high frequency sounds at 35db which is amazing, because before her implant with her hearing aid she could hear it at 90-100db. The picture below shows some pictures of what she can hear. To be honest, it has been a very slow process. She still isn't responding to much at all, but we know she can hear something and we will just continue to work with her!!! After going to the CHARGE conference and noticing all the older kids who cannot speak (but they sign well) it kind of hit me that sign language is probably going to be her main language her entire life. Add the trach on top of her hearing loss and she is pretty much hit in both of the major areas needed for speech. We will never give up, and I am still hopeful one day I can hear her talk!!! 

Trevor's brother Jordan was so incredibly nice and drove us down. Our plans fell through with who we were supposed to go with before, so he volunteered to drive us and we are so thankful!!!!! He is such a nice uncle and just in case anyone is wondering.... he is single:)

 

I can't even believe this little girl will be three next week. She is such a good girl and was perfect on our long day in the car and at appointments!!!