Love THEM to pieces...

I sure love these two. Ever since Laynie was born, Drake acted afraid of her and not interested. We are STILL having that problem. He isn't mean at all, in fact he has the sweetest heart. He is just hesitant and distant towards her. I have always told myself that it is just her situation and he is afraid all her medical stuff and is afraid of hurting her. It has been bothering me a lot lately and I have started getting mad at him for it. Growing up, he needs to be her biggest protector. I hate even thinking about sending my kids to school. The smartest and most beautiful child gets teased, and I don't want anyone hurting my little kids, especially Laynie because she is "different"!!! I know I have a little ways before they are in school, but it is a definitely a big concern. From everything I have observed, I think Drake thinks if he gets too close to her then he will have the "hurts" that she does. When I am feeding her through her tube in her stomach, he will look at it and say, "I don't want to go to the doctor." Who knows, I hope and pray that they will be best friends and protectors of one another!!! I know my Drake has the kindest heart and I KNOW he loves her, but we have got some work to do with him to understand that he is not going to have the same medical problems as her if he is close to her. I LOVE these pictures of them. They were really enjoying being next to each other (okay, maybe there was a little bribing). I especially LOVE the one below......... they are so cute:)

It was super windy the other day and Laynie loved it when I would stand her against the back door. The whole house was shaking, and she could really feel the wind when she would be against this door. Little things make her so happy, and it is so much fun to see!!!

Laynie gettin' jiggy with it...

Laynie loves to dance. We were getting ready to leave Grandma and Grandpa Petersen's and the little cousins were dancing and Laynie just started shaking her groove!!! Pretty good for someone who can't hear the music! I told you she is the cutest thing in the world!!!

18 Months Old...

It is crazy that my baby girl is already 1 1/2 years old. I still think of her as my baby, but she is not a baby anymore.

We rarely see a sad face like this. She is the happiest girl in the world. I don't know how we got so lucky to have her. She can brighten up my day with just a single smile. She is getting sassier and more dramatic lately though. I guess it is just a normal girl thing:)

She loves to hang out on the floor. She rolls and back scoots everywhere. She loves to play with these puzzles!!! She is an extreme mamma's girl lately and I love it. She holds her hands out for me any time she sees me. It is pretty sweet.

She usually sleeps from 8:30-6:30 and has 1 nap for about 1 1/2 to 2 hours. Sometimes she likes to party at night and stays awake for 2-3 hours, but usually she sleeps through the night.

She hit the 19 pound mark this week. She is still doing well on the blenderized diet. I gave her some nutella lightly spread on this spoon and she was having a blast. I no longer give her actual big foods because she bites them off. It scared me a little after I was suctioning oreos out of her trach. No good!!! She is doing well with little licks though!!!

She has been doing really well lately. She hasn't been sick since Christmas and before then she was seriously sick every other week since September (knock on wood). Her doctor thinks the ventilator is really helping her and keeping her MUCH healthier!!!! Her brother just caught a cold, so who knows how much longer she will stay healthy. Laynie is such a sweetheart and melts our hearts. She is still the strongest girl I know and has helped our family grow in so many ways. Happy year and a half baby girl!!!!

Valentine's surprise!!!

I had a BIG surprise for Trevor for Valentine's Day. I had it planned for at least 2 weeks and it was the hardest thing in the world not to tell. He came home on his lunch hour on Valentine's Day and I handed him his card. In the card I told him what we were doing for the rest of the day. We were going to Salt Lake to our favorite restaurant and then to the Lady Antebellum concert. He was sooooooo shocked. I had already talked to his boss and arranged for Drake to stay with Grandma and Grandpa Petersen and Laynie was staying home with Holly (her nurse). I know Trevor would never guess in a million years that I would do something like this because I would have to leave Laynie for such a long time and we would be out of town if something were to happen. But, I totally trust Holly and we really needed some alone time:) Alone time is a little harder for us because we have to have a nurse watch Laynie. The longest we have been away together is 3 hours since she has been born, so we were very grateful for some time to spend together.

Here is Trevor opening up his card...

We went to dinner at Tepanyaki. It was delish:)

Ross and Afton met us at dinner and went to the concert with us!

The concert was so much fun. Thompson Square and Darius Rucker opened for Lady Antebellum. They were all amazing.

We seriously had such a great time. It was one of our favorite nights spent together!!!

We had a great time with Afton and Ross

We sang until we nearly lost our voices and danced like crazy people. I think you could tell we don't get out very much. haha

We drove home and got home at 2:30am. It was a late night, but totally worth it. We got in bed at 3:00 and Laynie sat up and peeked her little head over the crib at about 3:05am. I was so happy to see her, but I was sure hoping she would go back to sleep soon. Luckily, she did!!! It was so much fun to hang out with my husband and just focus on him for a night. It made me remember when we first fell in love almost 11 years ago. He is my FIRST and ONLY love. I love you so so so much! Thanks for being my Valentine!!!

Weekend in a nutshell

• Laynie has become quite the eater. She is LOVING food. She basically just licks and won't let you actually put something (like a spoon) all the way in her mouth, but she is doing awesome. She was licking pudding off of this cracker that I thought she couldn't bite and a couple of seconds after these pictures I was desperately fishing in her mouth for a piece of the cracker. She didn't like that!!!
• Went out to pizza. We all enjoyed, especially Laynie who never gets out.
• I discovered some new taste bud favorites. I can't believe I had never tried Nutella?!?!?
• Winco.... I hadn't been there in forever until my mom asked me to go on Saturday. All the bulk foods were amazing. I will be going back.
• Dinner at my mom's house. All the cousins were there and played like crazy. They had fun playing playdough with Papa Leo.
• We rented a movie and did not watch it. We did watch part of the Grammy's though.
• Got my hair done again by my fabulous sister. Sure is a perk having a sister that does hair!!!
• Drake went to Sunbeams without a fuss:) Thank you Mason for showing up!!!
• Lost Drake at church
• Drake made his grandparents homemade Valentines. They are so cute and he is very proud of them:)

Happy Valentine's Eve...

Play time!!!

I love this picture of my kids playing together!!!
Laynie has pulled this wagon all over the house today. It has become a major obsession for her. She goes down the hall and back, over and over and over.... I had to take it away for the day because she has the worst rub burn on her head. I think we may need to get her a helmet because her head is sooooooo red and sore by the end of the day. She is a funny little girl:)

Appointments for Miss Laynie

We headed down again to Salt Lake for some appointments for Miss Laynie. She had an appointment with an Endocrinologist to talk about her missing olfactory bulbs and talk about her lack of growth hormones. He just ordered some blood work and we will just get her labs drawn once a year until she reaches puberty. At that time she will need to start growth hormones to help her go through puberty. So all in all, a very low-key appointment besides the blood draw:(

Next up was a modified barium swallow study. They do this in radiology and mix barium with some thin liquid, nectar, and honey consistency. She did surprisingly well during the study. She stuck her little tongue out and happily ate everything they fed her, besides the thin liquid where they had to use a syringe to squirt it in her mouth. She is VERY protective of her mouth and doesn't let a sole inside it!!! She ended up failing the thin liquids and passing the nectar and honey. I was so proud of her. Since she is so inexperienced with eating we will start her with honey consistency foods. We now have the go ahead to start with oral feeding. This is a VERY slow process, but it is exciting to start letting her experience real food.

Last, she had an appointment with the dysphasia (trouble swallowing) clinic where she saw the GI doctor and a dietician. The dietician was NOT impressed with our new blenderized diet. She was all about using formula, but the GI doctor was fine with it as long as she got all the nutrients she needed. She weighed 18lbs 4oz which is still not as much as they would like her to weigh. We are going to continue on the blenderized diet, but up the calories in the formula. Hopefully this will help our little gal gain some more weight. They try to compare her to a normal healthy 17 1/2 month old on a growth chart and most kids with CHARGE syndrome are small, so it isn't fair to compare her to the normal chart. I think she is doing great, but I will do my best to fatten her up a bit.

Our poor girl was sooooooo exhausted after a long day of driving, appointments, and a blood draw. She zonked out on my lap during our last appointment. She is a trooper:) We are proud of our girl and happy with the results from her appointments.....

Oh, and she also had an appointment with orthopedics last week and her hips are doing good. They still want to monitor them as she grows, but so far so good! (She has hip dysplasia)

And her little conjoined toe is fine. He says he doesn't want to separate them unless there is a problem. One of the toes is missing a little bone actually so it is better that they are together!

Geez, this girl keeps me busy.