Thankful {day 28, 29, and 30}

28) I am thankful to be a woman. I love being a female and everything that goes with it! Believe it or not, I am very grateful that I am the one that gets to be pregnant and carry a child for 9 months.

29) I am thankful to live in this time. I am grateful for modern medicine, technology, and all the advances that our world has.

30) I am thankful for my life! I am healthy and happy. I am learning new things everyday. I have people in my life that love me and I love them. I have a wonderful family and so many blessings! I and so grateful for my life.

Such a BIG girl!!!

Every once in awhile I look at one of my kids and just can't believe how much they have grown or changed. I have been noticing that in Laynie lately. I wouldn't say she has grown because she hasn't, but she has matured and changed a lot. She is quite sassy these days. She has an opinion and an attitude. I love it! She is still really sweet, but her personality is getting bigger and bigger every day. She loves to roll all around and back scoot her way to everything. She even goes down the hall into Drake's room to find new toys. It is really funny. She just started to reach out for whoever she wants and we love it. It sure makes me feel special when she throws her body towards me because she wants me to hold her! She still loves "Signing Times" and it is the only show that she will sit and watch. She loves to play in food and take tastes of food. She sticks her tiny tongue out and wants a taste of everything. She doesn't let anyone go in her mouth, but she loves her licks of flavors! She scrunches up her face like she is going to cry whenever she is giving attitude. We kind of like this little girl. She is so sweet!
First time wearing shoes... or I guess they are slipper boots:)

She is standing up leaning against the couch. She thinks she is SO COOL when she does this trick. It is pretty cool in my opinion too!!!

Looking cute as ever

Playing in bananas. This was during an occupational therapy visit. She loved smashing the bananas and making a mess.

Thankful {day 26 and 27}

26) I am thankful for my sisters. We are all very different and have different lives, but I love them and I consider them to be great friends. Every girl needs a sister, and I am lucky I have 2!

27) I am thankful for the town that I live in. Sometimes I wonder why I live in such a cold place, but I really love it here and I am grateful I can live in beautiful city in a gorgeous part of the world!

Thankful {day 23, 24, and 25}

23) I am thankful for CHARGE syndrome groups. I have learned so much from these groups. I get to share things and ask questions to parents that have children with CHARGE and individuals with CHARGE. These people live everyday dealing with similar challenges that we deal with. It is nice not to feel alone. I am inspired by so many of them. The girl in this video has CHARGE syndrome and she is dancing and signing "Firework" by Katy Perry. I loved this. I hope Laynie can be a rock star like this girl someday in the future. She already is a rock star in my eyes! The longer the video goes the better it gets... I am grateful for people like this young girl who I can smile at and be inspired by!

24) I am thankful for THANKSGIVING day!!! We had a wonderful Thanksgiving this year. We spent it with both of our families and ate so much wonderful food. Unfortunately, my camera is broken so I didn't take any pictures. I need to send it in to get fixed because it is getting really old to have to rely on Trevor's phone for pictures.

25) I am thankful for my health. It is something I take for granted way too often! It always takes a time when I am not feeling well, or see someone else with poor health to realize how blessed I am to not have any diseases and for my body to function properly. It really is a miracle!

I was right...

I love to be right, but not this time. Laynie is sick, just like I thought she would be:( Poor thing has a fever, runny nose, and has a lot of secretions. Thankfully, our nurse Holly was here last night because she got suctioned over 25 times. Whenever we let our guard down and take her around a lot of people she always gets sick. At least we were able to enjoy a fun vacation, but I feel bad she has to suffer now! Hopefully it will just be mild and not turn into pneumonia!

I also got a call about her sleep study results. I wasn't expecting a call for 2 weeks so I was a little shocked and I didn't have all my questions ready. They said that she had a lot of central sleep apnea and desaturations with and without the use of oxygen. They recommend that she uses a ventilator at night. Of course I will do what is best for her, but I asked if it is something they strongly suggest or something that she might benefit a little from. He didn't really answer the question. He just said that is the recommendation. This is another big machine that requires training and I am sure it is a big pain in the rear! She will have to go into the hospital for 5-7 days to get on it and make sure the settings are right and she tolerates it well. Then we have to go to classes to learn how to use it and then we can bring her home on a home vent at night. It just seems like this is a step in the wrong direction. I still have some questions for the doctor and I need to make sure this is something that she really needs!!! The good news is the ventilator might control her secretions a little better at night because it gives her PEEP (positive end-expiratory pressure). I'm not exactly too thrilled about doing this and spending a week in the hospital right before Christmas. Hopefully we can do it after Christmas, and I am still crossing my fingers that she might not need it at all.

*****I just talked to her doctor and he explained to me the difference between obstructive sleep apnea and central sleep apnea. He said that obstructive is when something is in the way, like tonsils or a floppy airway ect... You try to breathe while asleep but it is being obstructive and you have to work hard to breathe. Central sleep apnea is when your brain is not giving the signal to breathe at all. Laynie has central sleep apnea and it is a lot more concerning than obstructive sleep apnea. He definitely suggested the ventilator. So it looks like some changes will be coming in the future for little Miss Laynie Bug! Someone is researching what home ventilator our insurance will accept and getting back to us next week.

Thankful {day 22}

22) I am thankful for a glitz and glam.... make-up, hairspray, hair dye, perfume, clothes, jewelry, and accessories that make me feel more beautiful :)

Our busy, fun, & crazy week

We had a very busy week. We started it off last Sunday with Trevor's birthday. He turned 28! We had family over for dinner, and cake and ice cream. He said he had a perfect birthday staying home and watching football all day. I love you Trevor and I hope your birthday was great. Thanks for being my husband, the love of my life, and partner in life. xoxoxo

On Tuesday we headed down to Salt Lake for some appointments for Laynie. Drake stayed home with Mamma Maureen and Papa. She had a sleep study scheduled for Tuesday night. We had to be there at 8pm and she was pretty good while they hooked her up with all the wires. She was extremely tired because I kept her awake most of the day, so she just layed there and let them put all the stuff on her. I was surprised she behaved so well. She slept pretty good most of the night and then she woke up at 4:30. She wouldn't go back to sleep so they ended the study at that time. I am glad Drake wasn't there because Trevor had to come back to the hospital at 4:30am to come get us! This is very typical of her, she has some sleeping issues:) We should get the results back in about 2 weeks.Then, Wednesday morning she had an audiologist appointment. It turns out her hearing aid has been broken. I have no clue how long it was broken for! I hadn't noticed any difference with it on or off and now I know why! We got a new aid and she did some tests in a sound booth. She responded a little with it on so that is good. She will have some more tests over the next 4-6 months and then we will decide if she needs/wants a cochlear implant. I have heard great things about cochlear implants, but for some reason I am a little unsure about it. It seems like there are a lot of risks involved with the surgery!

Next, she had an eye appointment. The doctor said that she does have a small coloboma in her eye. It is in a location that it will most likely not interfere with her vision. Other than that, her eyes looked great. This is something we are SO thankful for. Eye problems and blindness are extremely common with CHARGE syndrome. 80% of CHARGE kids have colobomas in their eye.... so when they told us she didn't have them (at 2 months old) we were surprised, but happy! She is very lucky with her eye sight and I am so glad she has good vision (so far) since her hearing is so bad.

Her last appointment was with the GI doctor and a dysphagia (trouble swallowing) team. She saw a GI doctor, a dietician, and an occupational therapist. We changed her formula from Neocate to Elecare about a month ago and she has completely stopped vomitting. She was vomitting after every single feeding before and now she isn't at all. It has been so wonderful... a huge answer to my prayers! She has been losing weight though. She had a great curve going with her weight and she all of a sudden completely dropped down again. She is back into the 1 percentile for weight and she was in the 16th percentile. So we are increasing her formula from 20 calories to 30 calories. I am sure this will help a lot, and she will plump right up!

Her appointments went really well!!! We hurried home Wednesday night and got ready to go on a vacation!!!

My dad flew us and my sisters and all the kids down to California. My grandma from Washington also came down! We had a little early Thanksgiving together and we got to see my little brother's championship waterpolo game. He is a senior and this was his very last game. They won the game and it was so great to be able to be there to cheer him on!

I was extremely nervous about taking Laynie to California and on a plane. We got everything we needed for her (a special oxygen concentrator to take on the plane, and supplies shipped to my dad's house). It is just scary because I wanted to make sure we brought everything we needed for her and I wasn't sure how she would be. We also don't take her around a lot of people, because she gets sick so easily. She did really well though and everything went really smooth. Drake did great too! Our flights were delayed both ways which wasn't fun at all. And they lost Trevor's bag on the way home (still lost). Thank goodness I packed all of her supplies on a carry-on!
Halle, Drake, and Trevor on the plane to California

My dad and Laynie

My sisters and I

Cousins!!! Maddox, Drake, Jaxon, Sophie, Halle, and Ivy. Drake had a blast playing with his cousins all weekend. He loves Jaxon and copies whatever he does.

My brother Matt after the game recieving his award! He played so great and it was so fun to watch him play! Congrats Matt! We are proud of you!

Thank you so much dad and Erin for the weekend. We had such a great time and we are so glad we were able to spend some time with you!

We made it through the week and we even made it through a vacation. It was a lot of work, but so much fun! I am counting on having a sick week now:( I hope not, but I will be surprised if Laynie doesn't get sick after being around so many people.

Thankful {day 19, 20 and 21}

19) I am thankful for my church. I am thankful to have knowledge of the gospel and to have a testimony of Jesus Christ, the Atonement, our living prophet, temples, eternal familes, and The Paln of Salvation.
20) I am thankful for "little things". It is the little things that mean so much. This morning Drake said, "I want to kiss you!" Of course I said, "Ok!" He kissed me and said, "I love you!" That sure melted this mamma's heart. Little things matter most!!!!
21) I am thankful for my parents. I was so blessed to be born into a wonderful family and I am so thankful for that. My mom is one of my best friends and we are so close. I love it that way! She is such a good mom and a good example to me. I just got back from spending the weekend with my Dad and step mom in California and we had such a great time. I love my in-laws. They treat me like a daughter and are such a great example to me.

Thankful {day 15, 16, 17, and 18}

15) I am thankful for my dogs and all the animals. I am an animal lover! I love my dogs Ernie and Elmer!

16) I am thankful for technology. How wonderful it is to be able to punch a few words in the computer and get all the information in the world. Technology makes life so much easier and I am grateful for it!

17) I am thankful for being a stay-at-home mom. Of course some days become long, and I might loose my mind sometimes, but I LOVE being able to stay home with my kids. I am so thankful I can be there to watch them grow and learn new things. I wouldn't have it any other way! I love being a mom more than anything and my kids make me so happy.

18) I am thankful for my husband's job. He works hard for us everyday. I am thankful that he has great hours, works close to home, has a good work environment, and is able to provide for our needs!

Thankful {day 13 and 14}

13) I am thankful for friends. I have a great group of friends and I have such a good time with them. I have good friends from high school. I have met new friends from different neighborhoods and wards I have been in. And I have friends in the CHARGE world (haven't met any of them, but I call them friends). I am grateful for friends that are always there for me!

14) I am grateful for a reliable vehicle. I am still loving my "mini" soooooooo much!!!

Thankful {day 12}

I am thankful for grandparents! My kid's have the BEST grandparents in the world! They are so lucky to be loved so much by grandparents. My kids LOVE them so much. It makes Drake's day if he gets to spend time with any of them! I also have wonderful grandparents and I am grateful for all they have taught me and done for my family!

Thankful {day 11}

I am thankful for our country! I feel so blessed to live in this FREE country and enjoy all of the opportunities and blessings it has to offer! I am so thankful for the brave men and women who risk their lives so we can be protected! I am grateful for their families who sacrifice so much while their loved ones are away! Thank you!!! I loved this video!
Happy Veteran's Day!

Thankful {day 8, 9, and 10)

8) I am thankful for medical technology. I could go on forever about this, but I won't. I am grateful for doctors, nurses, medicine, machines, etc... Especially those doctors, nurses, and equipment that saved my daughter's life:)
9) I am thankful for food. I am grateful that I don't have to starve and I have plenty of food to eat. I can't believe that there are little children in other countries (and our own) that are starving for food. I need to think about that more often when I am looking through my pantry and fridge and "there is nothing good to eat"!
10) I am thankful for sleep. Not that I got ANY last night, but it makes me appreciate it more when I want and need it so badly! Our little party animal stayed up until 4:30am. Yes, that is TRUE... She didn't even close her eyes for a second. She was mad because she wanted out of her crib... so crying leads to more suctioning:( And she only took an hour nap yesterday. I think it might be time to talk to the doctor about sleep medicine?!?!?!?! Like I said before, she loves to pick the nights when our nurse isn't here to be naughty! The two previous nights (when our nurse was here) she slept like a rock! She is such a little stinker sometimes!

Never perm your hair!!!!!!!

My mom was giving my cute little niece Ivy a perm this weekend (it turned out adorable), and somehow I got talked into getting one as well. I thought it would give me more volume and would be really easy to fix on days I didn't want to do my hair! It turned out worse than horrible. All of my bleached hair turned to fried mush, and there really isn't any curl. Seriously, I can't even run my fingers through it without it falling out. I am so worried that I am going to have to cut my hair at the root. I have slept in a deep conditioning treatment the past two nights. It seems to be a teeny, tiny bit better today. I wore a hat yesterday, and today I look like a poodle with a fro!

This picture quality is horrible and the picture still doesn't do my hair justice to how bad it really is! Trust me, NEVER get a perm! And the worst part is... the lady at the beauty supply store told me to do a strand test to make sure it wouldn't make my hair fall out. I wish I would have listened!

Thankful {day 7}

I am thankful for our nurse Holly!
She comes 3 times a week so we can get some sleep, and then 2 days for a couple of hours so I can run errands. It is so wonderful! Holly fits in our family perfect and I couldn't think of anyone better. Laynie loves her and I know that she loves Laynie (which is so important to me). We didn't have a night nurse for awhile, because it is a little weird having someone in your house while you are sleeping. After I just couldn't survive anymore, I finally gave it a try. It has been the biggest blessing in the world. I wish sleep wasn't required, but since it is, Holly makes our lives a lot easier. I would be so lost without her. When we first brought Laynie home from the hospital after she got her trach, we didn't have nursing for awhile, and it was 5 weeks before I left the house (not even to go to the gas station). I have no clue how I did that without literally pulling out my hair. Now Trevor is a pro and he can watch her. I look forward to spending quality time with Drake and getting out of the house twice a week. But on the other hand, I dream about the day I can take Laynie anywhere (without worrying about her getting sick and without all the equipment). We do go a few places, but we are limited. I am so grateful for Holly to work a crazy schedule and help us out! Although we love Holly, I am very excited for the time to come when we don't NEED her anymore!

My new THING... check it out!

My neighbor, Kristie got me started selling Paparazzi Accessories! I went to a party at her house and I couldn't believe that everything was only $5! I came home with 2 necklaces (with earrings included) and a headband for only $15. I didn't feel guilty for buying myself a little something, and I couldn't believe how cute and trendy they were! I began talking to her and before I knew it, I signed up to sell it myself! I just thought it would be something fun and super easy to sell! I am not into businesses that pressure people to sign up or buy something, but this was so different because everything is so affordable! Also, you don't have to order from a catalog... you just take what you want and have it right away! Here are some examples of the types of accessories I am selling!

Necklaces... they all come with matching earrings too! All for only $5!!!
Earrings

Hairclips

Head bands

Bracelets

Kid's jewelry.. the kid's jewelry is all only $2

And rings!!!
I am having an open house at my house on Thursday, November 10th from 6-8pm. Everyone is invited! If you are interested in hosting an open house you will get free stuff:) and you can also talk to me about becoming an independent consultant, like me! I love it so far, and I am so excited to start something new!

Thankful {day 5 and 6}

5) I am thankful for family. Somehow I lucked out, because I have been blessed with the BEST family... both my family and my in-laws! Family is so important to me and it is so much fun to spend time with them! This weekend Drake and some of his cousins have a blast sliding down Mama Debbie's stairs in a sleeping bag!

6) I am thankful for my little boy Drake. He has the most tender-heart in the world. He is so caring and sweet. He is also a true boy and is FULL of energy! He makes my days so much brighter and exciting! I just love my little boy to pieces!

Thankful {day 4}

I am thankful for what I have learned from Laynie.

In high school I signed up to be an aide in the special needs classroom for one of my classes. I have always been interested in special needs kids, because my uncle David is handicap and I just love him to pieces and he is the coolest guy I know! On the first day of class I was so sad. I watched all these kids in wheelchairs, drooling, not able to talk, or doing uncontrollable things and it made me so sad for them. I felt so bad for them that I couldn't stand watching them suffer. I remember leaving and having tears in my eyes, and I went straight to the office to change my schedule. I always felt bad for doing that, but I couldn't handle how sad it made me feel.

Now I have watched my own daughter suffer. I didn't have the choice (nor would I take the choice) to "change my schedule" and not be there for her. I have watched her get poked probably 50 times, held her down as they stick scopes down her nose and into her airway to look at her vocal cords, watched her go through many, many surgeries, watch her gag and vomit almost after every feeding, watch her not respond when I make an extremely loud noise, watch her fight as I clean and change her trach, and many more uncomfortable procedures, etc... It is not easy to watch your child suffer, but I can't even begin to explain how much I have learned from this.

I have learned to have a greater appreciation and understanding of the Atonement. I have learned to enjoy and celebrate the little things! I have learned that I am a different mom and person than I was a year ago. I am grateful for that. I am grateful that Heavenly Father trusts me enough to give me certain challenges at only 25 years old. I have learned life lessons that will help me throughout the rest of my life. I realize I wouldn't have the same perspective on life and motherhood if I didn't have Laynie. My life is different than I ever thought it would be, but I am happy and that is all that matters! I have learned that even though my daughter has a hard life, someone always has it much worse. I have learned to be thankful for life and not take even one day for granted. I have learned to be positive, because it makes you feel a lot better. For any problem in life, I try to only let myself complain for a few minutes and then I start to count my blessings (one by one). It helps! It is amazing what special children can teach you! I have learned not to look away from someone that is different. I used to to think, Oh, I don't want them to think I am staring at them, so I will look away. Then, I would stare at them when they weren't looking, only because I was curious. I have learned to look at them in their eyes and smile and talk to them like any other person. I love it when people ask me about Laynie and talk to her! I have learned that I am stronger than I ever thought I would be. I remember writing about when we first learned that Laynie was going to be born with a cleft lip {here} and I thought there is no way I can do this and put my baby through surgery. At that time, I had no idea what was really in store for her and what I would have to watch my baby endure. I have learned that I am strong and I can do hard things!

If I would have stayed in that class in high school, I am positive I would have learned to love the kids and I am sure they would have taught me some wonderful things! I am so grateful for what this little girl has taught me. Our family would not be the same without her. I thank Heavenly Father every day that He trusted me to be her mom!

Thankful {day3}

I am thankful for laughter. Nothing feels better than getting out a huge laugh from the belly. I love hearing Drake's cute laugh and hearing little sounds of Laynie's laugh. I am thankful I can hear those things and I hope someday Laynie will be able to hear something!

THANKFUL {day1 and 2}

1) I am thankful for my husband. He doesn't get as much of my attention as he used to, because my other two little stinkers take almost everything out of me. But I want him to know that I love him and appreciate everything he does for me and our family! I know he would do anything in the world to make me happy!
This is one of my biggest pet peeves (drinking milk from a cereal bowl).... but honestly these two make me not even care about it. This might be the cutest thing I have ever seen! I forgot to mention that he is a great dad too!

2) I am thankful for my home. It is warm and comfortable and I love it. It makes me sad to think that so many people in the world don't have a home! Sometimes I think... Oh, I want this and that, and more of this, and one of those. I have so much, and I need to remember to be thankful for what I do have. I am so blessed!

Halloween

Halloween was fun this year. Drake was the cutest monkey and Laynie was an adorable butterfly! I took Drake tick-or-treating around our neighborhood and then we all went to go visit the Grandparents!


Cutest little trick-or-treater

Mesa Falls

We got out of the house and took a drive up to Mesa Falls this weekend. It was such a fun day! I think we missed the pretty leaves by a couple of weeks, but it was still beautiful!

The kids both LOVED being outside and doing something new!

The water fall is so pretty...

I sure LOVE my little family and spending time with them!