This and that...

Helping his sister color....

This is what I get when I ask Drake to take a picture for me..............

Finally, a decent one!!!

We have been loving going for walks lately. Drake loves to walk the dogs and Laynie also wanted to walk one. She just adores Drake and wants to do everything he does.

Mommy and Laynie:)

I love you!!!

We are so happy that it is spring:)

Understanding a Cochlear Implant

I thought I would share a little information on what a cochlear implant is for our family and friends that are curious. I have been reading about them and learning about them for awhile now, and they still confuse me. So I will do my best to describe it, but no promises that it will be easy to understand. 

Laynie's surgery is next week (as long as she stays healthy... she just got a cold on Monday). She will have a CT scan first so the doctor can see where her facial nerve is. One of the big complications of this surgery is that her facial nerve can be damaged and it can cause facial paralysis. We love our little girl's big smile and we are really hoping a praying this does not happen, but realize it is a possibility. Also her inner ears are formed very differently because of her CHARGE syndrome, so it is going to be a lot more complicated than most cases. The other major complication is infection and meningitis. She will always be at a higher risk for meningitis after her surgery. It definitely scares us!!! And since the surgery is near her brain, the infection risk is very serious.

For the surgery, I think they will be shaving a little bit of her hair behind her ear and then making an incision behind her ear. They will drill a little hole in her skull and put a magnet right behind her ear (in her hair). They are planning on removing her ear drum to give them more room to operate because she does not need it. They fish a coil up in her inner ear into her cochlea. That will contain the electrodes that send the signal to the brain. This will be the part that the doctor is a little concerned about. The more electrodes that goes into the cochlea, the better the results. He said that Laynie has a very small cochlea so he doesn't know how many electrodes he will be able to fit in. So we will just have to wait and see. Then she has to wait 2 weeks for it all to heal before it gets activated. That will be such an exciting day:)

The diagram above shows how a cochlear implant works. It still confuses me, so it can describe it much better than I can!!!

Laynie is getting a new type of implant called the Neptune. It is the first cochlear implant that is 100% water proof (not that she will be swimming) but we really liked it because it is worn completely off the ear. It just has the headpiece that will magnetize to the magnet inside her head. It also has a microphone on it. And then a cord will connect the headpiece to the processor. The processor can be worn on an arm band or clip on to a shirt, etc.... We are really excited about this option so we don't have to worry about putting something back on her ears 100 times a day.

 I am sure we will learn so much in the next few weeks and we will become pros, but it seems very overwhelming right now. I hope I explained everything right. I remember when they told us we would be pros with the trach and I laughed. You learn quick when it comes to helping your child!!!! We are excited about this new adventure for Laynie, but still are very nervous!!!

Somebunny is cute...

Welcome spring...

Happy first day of spring!!! It was hailing this morning... what a wonderful way to welcome in spring:)

Drake went to the dentist to get a cavity filled. He was excited to go because if he was good then he would get to go pick out a surprise!!! He gave me a thumbs up and was ready to be brave!!!

He was so good. He never moved an inch. He had laughing gas and it must have really relaxed him. You could see his hands moving and he started making a little noise near the end, but I was so proud of him!!! There is a sweet story about this picture.... Laynie LOVES to look at the pictures on my phone and when she got to this one she stopped and looked really closely at it. Then she signed Drake and did a fake cry. It was so sweet. She knew something was wrong with this picture and she was very concerned about her brother!!! 

After he was all done, he picked out Optimus Prime because he was so brave!!!!! He was super excited about it.

Laynie helping me make some cookies.

Well we had one semi-nice day this week and we hung out outside for awhile.

Spring wouldn't be spring without a rainbow!!!

And just because these two are so cute:)

The good, the bad, and our weekend...

Good news first..... we went to an appointment with Laynie's plastic surgeon to schedule her 3rd repair on her soft palate. It was supposed to get done this summer. Her palate was so wide that it is going to take 3 surgeries instead of 1 to get it all repaired. The surgeon said that we can WAIT until her next palate surgery (hard palate) and do the rest of her soft palate along with the hard palate repair. So she won't have that surgery this summer and we are sooooooooo excited!!!! Her plastic surgeon usually does the hard palate at about 4 years old, but he said we will do it at 3 1/2 and do the rest of the soft palate too. So in about a year from now! Yay!!! One less surgery this year:)

 

Bad news...... she got sick:( and yes we are blaming that doctor that stuck her fingers in her mouth. She was probably the most miserable I have ever seen her on Friday night and was throwing up constantly. Then she was completely normal on Saturday. It was so weird. But then we were up all night suctioning her last night, so she has another cold. I swear this girl is sick more than she is healthy. It is going to be a miracle if she is healthy for this surgery in a couple of weeks.

 

We had a great weekend though. My dad and step-mom came for a visit. We always love it when they visit:)

We took the kids to a movie. We went to Escape from Planet Earth and the kids had a great time! We ate delicious food and just hung out!!!!

Happy St. Patrick's day from us!!!!

Trevor took us on a ride to show us where he took his first ride on his new road bike. He got a flat tire on his very first ride:( Such a bummer!!! Those windmills are soooo huge!!! Laynie took a snooze, Drake bugged the dogs, and Trevor and I chatted and relaxed.

It was a great weekend:)

Appointments and greeny celebration

We had a trip to Primary Children's yesterday. Laynie had an appointment with the dysphasia clinic (trouble swallowing) where she sees a GI and dietician. Then she had an eye appointment. We were on extreme germ patrol since we are only 2 weeks away from her cochlear implant surgery and it seems to be a miracle if we get out of the hospital without her catching something nasty!!! She thinks if she pulls the canopy of her stroller over her head then she is safe. She is starting to know when we are in a doctors office and does NOT want us to get her out of her stroller. We don't mind though, because it guards her from germs as we are walking through the hallways!!!!

Her GI appointment went great. She is 23.9 lbs and 33 inches long. She is tiny, but doing okay proportionally. Like I said before, we were trying so hard to keep the germs away and then her GI doctor came in and shook our hands and wiped food away from her own mouth, then stuck her finger in Laynie's mouth. We were so shocked that we couldn't even say anything. Seriously, a doctor sticking an un-gloved finger in a medically fragile child's mouth without washing her hands???????? Urrrrgggg, it made us so mad and if Laynie gets sick we are totally blaming her.
Her eye appointment went well, but we had to wait for like 3 hours. Good thing Laynie is the best child in the whole wide world because we just walked back and forth, and back and forth for 3 hours (without letting her touch ANYTHING). She was happy the whole time and waited with a huge smile on her face, unlike Trevor and I!!!
The ophthalmologist said her vision is doing well. She is very far-sighted but that's okay for now. Her right eye is starting to turn outward so we will keep an eye on it. If it starts to do it more than 50% of the day then she will need surgery to correct it, but for now it is probably only doing it 10% of the day, so we will just wait and check it in another 6 months.

We decided we needed a little yummy dinner since our day was not so fun and we went to Tepanyakis!!! Our favorite place in the whole wide world!!! It was delicious and Laynie thought it was soooooooo cool. She was a hoot!!

Drake stayed with Grandma Maureen and had a very fun day. We are so thankful that he loves staying with grandma and that she is so willing to help us when we go to Salt Lake.

He had his St. Patrick's day celebration at school today. He wore green from head to toe, even in his hair:)

I had Drake stand here so I could take his picture and Laynie wanted to get in the picture. Drake was trying to push her away because it was "HIS St. Patrick's Day picture."

She kept pushing and started making him mad.......

"No Laynie I don't want to take a picture with you!!!"

I guess she won this battle!!! Gotta love sibling rivalry!!!

Signing with the kids

We have been learning sign language as a family since Laynie was about 1 year old. We learned a lot at first and Laynie caught on really well. It seems like I have been stuck for a long time though. I need to learn more so I can teach Laynie more, so she can communicate. You would never realize how important communication with your child is until you can't communicate. She is 2 1/2 now and it is only going to get so much harder. I don't even like thinking about her communicating with her peers as she gets older because it makes me so, so sad. I am really going to try harder to learn more for her!!! This is the kids practicing signing. Laynie pretty much copies whatever Drake is doing, but she really knows most of them too!

 

I started watching this video of Rachael Coleman (signing times) the other day and loved it. Once I started watching I couldn't stop. She is so inspiring!!!! 

http://www.youtube.com/watch?feature=player_embedded&v=b1VUpNv80IQ

Weekend shenanigans...

We did some spring cleaning this weekend. I love spring cleaning:) Laynie loves to help me sweep and vacuum!!!

Laynie had a bad day due to her cold and her oxygen levels weren't where they were supposed to be.

 We had to bring out the oxygen. This picture shows exactly what she thought of that!!! Every time I would put it on she would bawl and rip it off. Luckily, she didn't need it for that long and she is back to no O2.

These kids love their grandpa Petersen

I love her to pieces

Ahhhhh, sibling LOVE!!!

And Trevor spent the weekend admiring his new bike!!! I am happy for you Trev and can't wait to cheer you on in your races!!!

"Ornament giver"

This is probably the most random post I have ever written, but I was looking back at my blog book tonight and saw this picture. It is a silly wood ornament that Drake colored for Christmas when he was 2. I have thought about this ornament so many times over the past years, and it means so much more to me than a homemade ornament worth a quarter.

Families from our church brought us dinner a few times a week after we returned home from the hospital with Laynie after her trach. It was by far the hardest time of my life, and I was literally drowning!!! I wouldn't admit it at the same, but looking back I have NO clue how we all made it through.

Anyways, someone brought us dinner (they were new in our church and I don't even remember their name) and the lady also brought this ornament and said, "My kids were decorating these today and I thought your son would like one." I know I sound so crazy, but that lady will never know what she did for me!!! We had received all sorts of wonderful acts of kindness over the months prior, but this is the one thing that I look back on and stands out the most. She didn't know that I was feeling so guilty and horrible about not being able to give Drake the attention that he deserved. All my energy was spent on keeping Laynie alive at that time. It made me so happy to be able to sit down with Drake for a few minutes and help him color this ornament. No one will ever understand this, but it made me feel like someone was thinking of him too, not just Laynie. He was going through a major change in his life too and I was so afraid that we would put him second because Laynie needed so much. I really think siblings of special needs children are very special too- they deal with a lot!!!

I often think of times when I can be the "ornament giver" to someone else. Whenever someone needs some help I have a hard time knowing what I can do to help and sadly most of the time I do nothing because I don't know what to do. Bringing a meal or cookies often comes to my mind, but I want to do something that means more... like the ornament!!! Anyways this post is so random, but it has inspired me to do something more at times when I can help!!!

You never know when a simple kind thing can mean so much to someone:)

The story of Laynie and the bunnies...

Grandma's rap, sick girl, and sensory play... random

It was my lovely grandma's birthday on Sunday and we had a little get together!!! Trevor was being a good dad and stayed home with Laynie because she was sick again.

And we made up a dance and rap for my grandma's 79th birthday. Here is the rap portion... This is quite embarrassing, but who cares!!!!

Here is our little sicky!!! She just had a bad cold and fever and she is actually almost better now. I feel so bad for her sometimes. She literally spends half of her life sick. And it isn't easy for her when she is sick. She still smiles through it all. Sometimes I get used to her life or don't really think a lot about her being different. Then other times, it gets me. I can't believe all she has to go through. I would take your place in a heartbeat if I could. Hang in there tough little cookie. Mommy loves you!

Laynie's nurse comes once a week during the day so I can go to the store and run errands. Drake and I went to the dollar store and brought her back these surprises (slinky and balloon). She was so happy but she wasn't happy when I tried to take her picture. haha she would seriously start crying every time I tried to take a picture. I thought it was funny!!! 

For occupational therapy Laynie got to play in some oatmeal for "sensory play". We thought she would hate it, but she loved it. She dug her little hands right in and was flinging oatmeal everywhere. Sometimes I think I have a harder time with the sensory play and getting messy than she does, because messes stress me out!!!

She loved it!!!

 

This is a much better and cleaner type of play that I can handle..... playdough!!!!