Appointments, fun, and a little getaway

We went to Utah last week. We usually have 3 or 4 appointments for Laynie in one day so we usually just leave Drake home and go down and back in one day, but we only had 2 appointments and so we took Drake and stayed the night and had a little fun!!! It was nice to go down and have some fun, instead of just going to appointments. But........... I don't ever want to go somewhere for just one night again if we don't have to. It is so much work to pack up all the medical equipment, unpack it, put it all back together, pack it back up the next morning, unpack it again, and then put it all back together again!!!! We had a great time though.

Trevor took Drake to McDonalds and to play at a park while we were at our first appointment. She met with the trach/vent clinic, where she saw an ENT, pulmonologist, respiratory therapist, got some blood work, and a chest x-ray. Everything went well and there is nothing major to report:)

Then she met with the audiologist and got fitted for a new ear mold for her hearing aid. She had some hearing tests done in the sound booth. There was no major improvement. She said it is time to start the cochlear implant process if we want now. I think that is what we want for her, but we have to make sure the doctor will even implant her first. Her anatomy is different, so he will look at her MRI and some other things and decide. This is probably one of the hardest decisions I have had to make for her. I want to give her the best possibility to hear, but there are some risks and concerns I still have.

Overall, her appointments were a success and hopefully we don't have to go back until the first of May!!!!

Drake had a blast playing at the park with his dad.

We stayed in Midway and my sister and her family came to visit and go swimming that night. Drake was beyond excited to see his cousins. He told me that "Jaxon is his favorite friend!!!"

Laynie had an absolute BLAST in the pool. She kicked and kicked for an hour. She had a HUGE tantrum when it was time to get out.

Drake loved swimming. The end of last summer he decided that he hated swimming and refused to get in the water. He hadn't been since, so I was worried that he wouldn't want to go. He didn't even hesitate for a second. He jumped right in!!! Drake and Ivy had so much fun swimming together.

The next day we went to The Hogle ZOO. It was 70 degrees outside and beautiful.

This gorilla was hilarious. It laid here picking his nose and eating it.

Laynie was so happy to be outside and seeing new things. The simplest things make her so happy. She is such a sweetheart!!!

Drake's favorite animal is a giraffe

Drake was tired from staying up so late with his cousins so his dad carried him around most of the time. Drake had a great time seeing all the animals though.

There is nothing better than sleeping kids in the car.

I know this picture isn't very appropriate, but I had to document Drake's first time going potty on the side of the road:) He was SOOOO proud of himself!!!

It was a quick trip, but we had a good time!!!

Getting closer...

"The Mother Survival Mode"

I swear all I do is worry about my kids, especially Laynie. I think every mother worries and even has night mares about something terrible happening to her children. I really think it is a mother's biggest fear. I don't like it that I worry about her when I leave. If I missed a call while I am out, my mind immediately turns to something horrible. I worry about her when I go to sleep. I worry about her breathing during the night. I know life isn't fair, but I feel it is not fair that I have that worry. I feel like I should worry about her climbing out of her crib at this age, instead of being able to breathe throughout the night.

Laynie gave us a scare last night. When she woke up this morning I hugged her a little harder and a lot longer!!! Her nurse came and woke me up at 2:30am and said the high-pressure alarm on her ventilator wouldn't stop going off and her PIP was really high. This means that the air that the ventilator is trying to push into her lungs has some sort of resistance. It could mean that she is coughing, the tubing is kinked, or her airway is blocked. She was not coughing and the tubing was not kinked, so I decided to suction her. She was really dry so I added a few drops of saline to her trach and tried to suction a tiny bit deeper and the suction catheter wouldn't budge. I woke her up to try to get her to cough and continued doing this. I was pushing as hard as I could to get the catheter down her trach and nothing would budge. She had a really dry mucous plug. By this time she was having a hard time breathing and was barely getting any air through at all. She was trying to cough but couldn't get the air through. We changed her trach and continued the saline and suctioning and eventually she started to cough things up and was able to breathe again. We had one more trach change and then she was finally back to breathing normal. I got out her old humidifyer and put it on her for awhile to try to get her as moist as possible. I have been worried that she has been too dry ever since she has been using the ventilator. I'm not sure what to do because she wears a HME (little portable humidifier) all day long and has a humidifier on the ventilator. Good thing she has an appointment tomorrow with the trach/vent team. It couldn't come at a better time. This is my biggest fear with her. I worry about mucous plugs because I know how dangerous they can be.

After she was fine and back to normal, I went back to bed. I just laid there and cried and prayed. I couldn't stop thinking of how horrible it is to have such frightening feelings and worries flash through your mind about your child. I was also so thankful to have such a wonderful nurse for Laynie. I am thankful that I am able to have the knowledge to know what to do in an emergency. I am grateful that my body was able to kick into "The Mother Survival Mode" to help my daughter when she needed it so badly. Sometimes I just wish she had some sort of other problems instead of airway problems. There is nothing more stressful and worry-some than an airway. But on the other hand, she is healthy right now and growing and thriving. I couldn't be more blessed to have such a wonderful little girl as my daughter:) I thank Heavenly Father daily that I get to be her mom!!!

Our date with David

My uncle David got to come hang out with us one night. We LOVE having David over. He is such a delight!!! He is always happy and can always make you smile:) He is such a special guy and everyone loves him. We all went to get ice cream!!!

Drake has a real love for his great-uncle David. He snuggled him all night on the couch. He would talk to him and ask David to help him do everything. I'm pretty sure Drake was driving David nuts, but I couldn't stop it because it gave me huge hope that someday he would be nice to his sister!!! It seriously was the sweetest thing. It just melted my heart.

Last week...

We had a pretty good week. Drake got super sick last weekend with the stomach flu and he was so nice and didn't share it with any of us. He is still talking about being sick and tells everyone he sees. If he doesn't want to do something that I ask him to do, he says, "I don't feel really good." He has been better now for about 5 days so I think he is a pretty good milker. We spent our weekend hanging out and spending time with family. It was my grandma's birthday, so we had a little party for her!!!

My grandma (mammy), my mom, me, and Laynie

Laynie loved playing with my mom's glasses. Her personality is just so cute.

Drake loves playing with his cousins.

Halle and Drake

This is my uncle David. David calls Drake David Jr. because his middle name is David. It is so cute:)

Laynie playing in the sink. She LOVES taking baths and splashing! We can't let her get her trach or neck wet so we have to be pretty careful. I wish I could just let her go swimming and splash all she wants. She throws major fits when it is time to get out!!! She is so sweet, but oh boy does she have an attitude. It is pretty funny. She lets you know what she wants.

He loves trains

She likes this new toy and does pretty well on it. I have to be close because she tips over, but she can move it where she wants.

We have been working on tummy time since she was born. It has been her biggest challenge. She hates it with a passion. Her arms are so weak because she hasn't been on her stomach enough to build arm strength. She is starting to stay on her stomach for a little longer and even getting into the crawling position. She can hold herself in the crawling position for a few seconds, then her arms slowly get weak and her head ends up on the floor. I think she is getting closer to crawling though. It is so exciting!!!

Developmental milestones are celebrated very big in our house, because she has to work so hard to accomplish them!

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.