How is that for a title? I would like to thank Morgan Shanahan and BuzzFeed for posting pictures of some of our incredible kiddos in their Halloween costumes. Here is the LINK. Check it out and then come on back. The ability to have a platform to spread SMA awareness and show off some our amazing kids and their costumes is a HUGE blessing.
I can say firsthand how hard it is to find the right costume for Getty. Fitting just right, making sure she is comfortable in it, and positioning her in a realistic position is both fun but also a little stressful. Getty is always such a great sport about everything. Although, when it comes time to a smile, she gives me nothing. A bit camera shy or stubborn. Not sure which one.
I worry too much about germs, so we stay inside on Halloween. There are times when I wish she could experience Halloween just like most kids do. As a kid myself, I loved going house to house to find out what kind of yummies I would be rewarded with. At the end of journey the time honored tradition of counting every single piece of candy. In our house I buy some taffy and let Getty taste a little bit while our suction machine is close by after a couple of licks. She seems to like Laffy Taffy’s cherry the best.
What is similar in our household is the time honored experience of watching Peanuts, The Great Pumpkin. Getty loves it and I love to watch it with her. She giggles when the football is stripped and Charlie Brown is down for the count. Her humor is spot on.
While SMA changes the game plan, kind of like when Lucy pulls the football away from Charlie, there are still many ways to celebrate the holiday. It is just different.
A reminder to everyone interested. We have our 4th Annual Halloween Costume Contest. Here are all the DETAILS. Take lots of pictures and send us one to enter your child to win some really cool gift cards. Check out the details in the link.
Happy Halloween to all.
Well it is that time of the year again. Dress your kiddos up in the cutest costumes and enter into our 4th annual Halloween Costume Contest. Every year we are overwhelmed with cuteness and talent. You kids and parents are awesome and you come up with the coolest ideas. We did a little picture taking today and here is our Miss Getty…. sorry Mike Wazowski. :).
So here is how you can enter your child, little youngster, cuddle bunny, awesome human being.
It is very simple:
1) Take tons of pictures and then send (1) of them to firstname.lastname@example.org
2) Send picture buy November 3rd.
3) November 4th all pictures will be showcased for all to see and vote on.
4) We will use www.surveymonkey.com to hold the online voting process. The more votes, the better your chances for your little youngster to win one of the following prizes.
1) 1st place (the most votes) $100 Barnes and Noble Gift Card
2) 2nd place (the second most votes) $50 iTunes Gift Card
3) 3rd Place (the third most votes) $25 iTunes Gift Card
Voting will begin on November 4th and continue until November 6th at noon (pacific time) we will announce the contest winners on November 7th!
Have a safe and fun Halloween.
I thought it would be a good time to give some great updates on how Getty doing. Great I guess would be the term I would use. Great is an amazing word around here. Anything less would have this mama in a stir.
Getty recently had her clinic day at Kaiser. She got to see most of her doctors and she checked out with great reviews. Nothing needs to change. Miss lady is 45 inches and 42 pounds. I need to tweak her diet just a tad so she doesn’t increase in weight to much, but other than that, she is good. Genetically, my side of the family is long and lanky. So I think that is what we are dealing with over here. She is a growing daisy that just keeps growing and growing, and growing.
She got her labs taken. The lab lady just had to do one stick to get enough blood for ALL of her labs. A) That is so rare and B) I need to find her next time we come in. We got her labs back and she is well within the range for everything except for iron. I will supplement iron into her diet to fix that. So glad everything else came out level. There always seems to be a nervous lull before the lab results are in. I am on my toes trying to think of how to supplement before I even know what to supplement.
The past three or so weeks Getty has had some allergies that we finally got a hold of. When anything out of the ordinary happens in the health department, you triage immediately. We need to rule out a, b, and c, and d, etc. The good thing is that it is just allergies, but I am afraid she got a bad case of them due to the bad air here this past month and her poor head and sinuses were affected. She was miserable for a few days while we finally figured out the right mixture and then she had the relief she needed. Lots of secretions and snot. Singular, Flonase and nebulizer of Albuterol and saline seems to continue to do the trick. Just so thankful a remedy was found. I hate to see her uncomfortable. Especially when she can’t tell me exactly what is hurting.
Getty started the school year and she loves it. She has a speech therapist come two days a week, we love her. She also has a great orthopedic therapist come once a week. The rest of the week she is tuning in and interacting with her classmates on the VGo. This year already is so interactive for Getty. Last year we were just trying to learn the system and learn some techniques on how to be as interactive with the class as possible. Since we came in so late I think it was hard for the kids and Getty to form relationships. Honestly I was a little apprehensive this year. I know what this system can do and I wanted so much for the kids to attach to Getty. Well I will just say this, kids are awesome. Getty is just one of the kids and it is awesome.
She tunes in for the entire class period (roughly three hours), except for recess. The kids welcome her every morning and say goodbye every day. She participates in songs, math, cycle time, playtime, and one of her friend’s even poured her some tea the other day. It is so great to watch her interact with them. I attribute the incredible coordination and inclusion to Getty’s teacher. She is terrific and she is so good about making sure that Getty is a part of all activities.
Lockdown is among us. October is about the time our doors shut and life is created in the confines of a four wall house. This will be our fourth year of lockdown and while I am used to it, I am not used to it. Cleaning protocols are at their highest. A sterile living environment takes a lot of work and consciousness, but we know the drill. So here we go.
Getting ready for Halloween. We are slowly working on decorating the house with all things Halloween. Getty has her costume. We are so excited to take pictures. Can’t tell……it is a secret.
Oh and before I forget we will be doing the 4th Annual Halloween Costume Contest again this year. Very excited. I will make an announcement soon.
Here are some pictures of Getty in the classroom with her classmates.
Well yesterday (Thursday) was one for the milestone/memory book. Getty got to trial the Head Pod. I will do my best to describe it. Basically it is several bands that attach around Getty’s head so she can have complete control of her neck and head. Before I go any further, I need to explain that Getty has never felt this sensation. Since she is a type 1, the ability to hold her head up was never an option. When she was a tiny baby she could, but it was for tiny stints. So this is a big deal. Can you imagine never having the ability to hold your head up? Can you imagine what it would feel like to be given that ability? Well yesterday she got it. This is where I would add the word awesome. This was an awesome day. To her this was an awesome experience.
So as you can see the support to hold her head is around her forehead and what you can’t see is the support under her head. It took her a long time to realize that she was in the driver’s seat. To know she has been given this gift of independence of her neck and head was probably mind blowing but also a kind of apprehension. Slight movements here and there and then something extraordinary happened. Getty started to move her head from left to right and up and down. It was beautiful.
Our hope is with more practice, Getty will be able to gain more movement in her neck and head.
So I got a bit of footage to watch. She was being sassy and would stop her movement every time my phone came out, but I was able to get some footage.
So here is Getty in her debut performance. Click here!
A million cheers for Getty!!!!!!
Getty, once again hit another incredible milestone……….she lost two teeth. Two of them on the same day, I think.
We woke up as our usual routine would dictate. Getting ready for school demands a diaper change, new clothes, and an hour long breathing treatment. As I was brushing her teeth I noticed one of her lower middle teeth was gone. Like completely gone, vanished, no where. My first instincts was, “where is the tooth?” Since Getty cannot swallow, it is easy for a tooth to be aspirated. I lightly dug my finger into her little mouth in an effort to find the missing treasure. Nothing.
I had already started her breathing treatment so my thought was if it was in there it could have already come out and didn’t notice it. But nopety, nope. This tooth was gone. I started to get kind of frantic. She hadn’t simulated any choking at all that day or night, so where the heck was it?
I decided since the tooth next to the missing one as also loose, it needed to come out. Two missing teeth would send me reeling. So I began to move it around. Gross! The feeling of pulling a tooth out is so gross. But sure enough with a little twist, it was out. A sweet little tooth. Getty’s little tooth. I coveted the little thing in my hand and I just stared at it. Another milestone, chills ran up an down my back. About that moment Angie found Getty’s first tooth. It was on the ground. It must have come flying out last night during her breathing treatment and no one noticed.
So now we have two beautiful little teeth. The gap in Getty’s mouth is so cute too. It just feels like she went from being a little lady to a bigger little lady, instantly. Where does the time go. I remember like it was just yesterday when those little pearly whites were coming in.
So here is our proud little lady showing off her little teeth.
The tooth fairy was busy that night as you can tell. She was all over the place finding the perfect gift for Getty’s efforts. She found two shirts and a Lego set Getty has been wanting.
Congratulations little owl!