Our *S*n*o*w*m*a*n*

Winter has been so weird this year. It has been really warm and we have had barely any snow. It snowed a couple days ago and there was BARELY enough to make a snowman.

Drake loved it outside...

Our lovely snowman.

So proud... he was excited for dad to see it when he got home from work.

He was excited to ride his scooter outside...

Next time it snows we will hopefully build a big, beautiful snowman.

A new diet for Laynie Bug...

Mmmmmmm...... looks delicious?!?!?!? This is Laynie's new food for today (formula and sweet potatoes). We are starting her on a blenderized diet (BD). She has only ever had formula her entire life. Right now she uses Elecare formula which is a special prescribed formula that is supposed to be the easiest to handle, but she pukes after every single feeding usually. I have spent hours researching the blenderized diet and talked to a lot of fellow CHARGE mom's who have helped me a ton!!! A lot of their CHARGE kiddos have done amazing on the blenderized diet, so it gives me great hope.

A lot of times doctors and dieticians don't recommend it because it is harder to calculate the exact amount of calories the child is getting. It requires a TON of work for the parents and so it is something that they usually don't recommend. I am willing to do anything to help my poor girl. I am willing to cook all day (even though, let's face it... I dislike cooking) if it helps her out. We have an appointment with the GI team next week so I will run it by them and I am hoping that they are willing to help me to figure out her exact needs and help me with some recipes.

Right now we are just starting super easy.... I am blending baby food in with her formula. It can be quite complicated though. Some people don't use any formula at all and just use real food. They use meat, grains, fruits, veggies, oils, etc... and blend it to liquid form and feed it through the tube.

I am not sure how far we will go with this, but I am hoping and praying that it helps our Laynie Bug. So far today........... NO PUKING!!!!! That is a miracle!!!

What to do on a boring day???

Oh the joys of being bored. My mom used to always tell me that, "Only boring people get bored." I must be boring. The snow has just started to fall, but we are already ready for summer. We did have an afternoon filled with a fun coloring contest between myself, Drake, and Laynie. When I was little, my sisters and I would always have coloring contests and we would make my mom judge them. She would put a 1st, 2nd, or 3rd on our papers and tell us not to show each other. We would get our papers back and all 3 of us would be smirking and silently bragging that we got the 1st place. Then we realized that she put 1st place on all of them. I got really into those coloring contests and I always tried to get my mom to secretly tell me that I really won!!!

Laynie creating her masterpiece!!!

Drake actually painted instead of colored. He is catching on about staying in the lines!!!

The finished products..... You betcha I entered the contest. I gave myself 1st place too. Even though I won to two very small children, it still made my day better:)

Here is a close up of the mouth of Drake. When he was just learning to walk he chipped his front tooth so that is why they are different sizes. The dentist says they will start to spread out and straighten up since there is more room now!

Any tips, ideas, or secrets on what to do on a boring day???????

Drake's Dentist Adventure...

Drake had some dental work done. He went to the dentist about 4-5 months ago and they told us that he needed a lot of dental work done and it was best to do it all under anesthesia. We finally got around to getting it done. He ended up getting a tooth pulled (it was an extra tooth right next to his right front tooth), 4 caps on his teeth (sort of like a root canal... they remove the decay, do a nerve treatment, put some filler in, and cap it), and a whole bunch of cavities filled!!!

This is a picture of him before. You can notice the extra tooth next to his right front tooth?!?!

Our little trooper before. He looked so cute in his little gown. I told him what was going to happen (in a nice way) and he did pretty good. When the nurse called me a few days before his procedure to get his medical history, it was so strange answering "NO" to all the questions. Drake is such a healthy guy. I am used to giving them a medical issue for EVERY question they ask with Laynie. When the phone call ended she said, "Well, it looks like he is a healthy boy" instead of "Well, she has been a busy girl".

Drake and Daddy before..... When they were ready to take him back, the nurse gave him a piggy back and she galloped with him down the hallway. He looked back at us like, "Uhhhh, what is going on?" but before we knew it he was gone. They said it only took a few breaths and he was out.

His teeth were a lot worse than the dentist originally thought they were. He was in there for about 1 1/2. I'm not trying to say that I am perfect at brushing his teeth twice a day. Occasionally we miss, but we really do try to brush them everyday. How can his teeth be so bad? Well, the dentist said he wouldn't even consider his teeth moderately bad. He said he has had to pull every tooth on some kids and give them dentures. How sad!!! He says a lot of it is genetics and I guess Trevor got 9 teeth pulled when he was little. My last time going to the dentist was the first time I have ever gone without having a cavity. So I guess he doesn't have the best genes. I feel so bad that I have done this to him, but maybe it isn't ALL my fault.

Trevor and I decided that we have been in surgical waiting rooms way too much as parents. It's not a fun place to be!!!

Here is our little rascal after his procedure....................

He was a little sleepy and he fell in love with these dolphins. He wasn't upset, but he kept saying he wanted to go home.

This next picture is a little gross. They ended up pulling not his extra tooth, but the other tooth that was the same as the extra tooth. The extra tooth was healthy and the other had a big cavity in it, so they decided to save the extra tooth. The dentist said his teeth will slowly move back to where they should be. He has a big gap, but I couldn't get a good picture of it. Here is his tooth that was pulled. I was so shocked with I pulled it out of the envelope. Holy cow... is my child a werewolf??? It looks like the tooth fairy is coming tonight!!!!!!!!!!!!!

Drake has been a champ! He has been bouncing off the walls like his usual self. He is a tough little boy!!!

P.S. Can you guess which foot he painted and which one I painted??? He painted it in 1 minute flat. I was standing right next to him and didn't even notice.

We are so proud of you Drake!!!

This girl likes Trucks...

Crazy randomness

We are back in our routine of hanging at home. I had to capture a picture of my sweet girl. Her ventilator has been going okay. It was magical while we were in the hospital (no suctioning and sleeping like an angel) then once we got home, things changed. Alarms were going off every 10 minutes. It was crazy!!!! She also has been needing suctioning about 5 times a night. I don't understand why it was so wonderful in the hospital and now it is different. I finally got a hold of her Pulmonologist and he gave us permission to turn off 2 of the alarms that were driving us nuts. She is still needing suctioning though. I guess it was too good to be true. And we have to drain the water out of the circuit quite frequently or it causes madness.... Serious MADNESS with very loud alarms!!!

She is usually the child that doesn't get into trouble..... until she got into the markers today!!! We usually leave the mischief making up to Drake. As I have been typing this I walked out in the kitchen to do something and I found him with ranch dressing smeared in his hair!!! He is sure an entertaining kid.

We brought up the high chair last night from down stairs so Laynie could sit in it while we were eating or in the kitchen. Drake has been obsessed with it and he tells me that he is a baby!!! He talks like a baby and tells me he wants a diaper, his sippy, and tag (blanket).

Then... he starts back scooting around the house. He is copying Laynie, because she is a baby. Kinda cute if you ask me!!!

Laynie has learned 6 signs. She knows eat, sleep, play, more, all done, and no. It is sooooo cute. I tried to get them on camera, but it is hard because sometimes she likes to do them and other times she won't. I am amazed at how fast she is learning them though.

Laynie's new ventilator

Before we headed down to Primary Children's on Tuesday, my parents took my brother to his first movie. They went to Puss in Boots and I stayed home with my nurse, Holly. Drake loved the movie and did really well and can't wait to go to another one. They wanted to do something fun with him, because he was staying home with our grandparents. (Thanks grandparents for taking care of our boy... He had a blast)

We went to the hospital to get me started on a ventilator at night. My sleep study showed that I have central sleep apnea and need assistance while I sleep. We were there from Tuesday to Friday and it was a long and boring stay. I am soooooo glad I wasn't there for surgery or because I was sick, but it still isn't fun being in the hospital. My parents had to do some ventilator training during the day, but other than that we just had to hang out all. day. long!!! I did AMAZING on the ventilator. My parents were sooooo shocked because I only needed suctioned one time at night. That is a major record. I usually get suctioned a million times. It is a little complicated to understand and the alarms would put a fire alarm to shame. I loved not having to work so hard to breathe at night, and I slept so well.

Some of the things I did while we were there to take up time was being held by my mom a lot.

Played in a fun activity center.

Sat on my dad's lap and played with the remote.

Pulled my valve off a million times an hour.

Went on walks in a wagon. This was my favorite activity. I would smile and chat the entire time.

My dad blew bubbles for me.

I played in the bath tub.

And I got my first hair cut. My mom couldn't stand my stringy mullet and it would get in the way of my trach ties, so she cut it. I like my new look:) My poor head is getting quite bald on top/back because of my crazy back scooting. I can go all over the house now.

This is what I look like hooked up to the ventilator. There are a lot of tubes and wires and the vent alarms at everything!!! My parents are a little tired today because I was alarming every 5 minutes last night. They are new to this and need to work out a few things!!!

Another thing I worked on was signing. I know A LOT of signs now. I am happy to be home and I am happy to be sleeping safer and sounder!!!