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Getty Updates

From Kate:

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.

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Head Pod

From Kate:

 

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.

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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!!!!!!

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Toothfairy….We’ve Got Two for You!

From Kate:

Getty, once again hit another incredible milestone……….she lost two teeth. Two of them on the same day, I think. :)

Quick rewind.

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!

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Sparkles for Getty

SparklesforGetty_fb_coverFrom Kate:

I want to thank our friend Freya for offering to hold a great fundraiser for Getty Owl Foundation.

Here are all the details:

WHEN: Starting NOW and until the end September

WHERE: Online http://www.chloeandisabel.com/boutique/freya/700412

HOW DOES THIS HELP GOF: 25% from every purchase of her Chloe + Isabel jewelry line will be donated to Getty Owl Foundation.

WHAT ELSE: They will also be giving away raffle tickets to those who place orders of $100 or more. Winners will be drawn on October 1.

TELL ME MORE ABOUT CHLOE + ISABEL: Chloe+Isabel is a jewelry line that carries both trendy and timeless pieces. All the jewelry is designed in NYC, hypoallergenic, lead-safe, nickel-free and backed by an amazing lifetime guarantee.

 

We would like to thank Freya and all who order. Thanks a bunch. The jewelry is so pretty. Mama owl already bought some stuff. :)

 

Here are the raffle prizes. Hoot! Hoot! Check out the details above to see how you can be in the raffle.

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Best Bargainer in the West

From Kate:

I remember when Getty was first diagnosed and our family was trying to make sense of all of it, I got some advice from a fellow SMA mom. She was and is a veteran mom. One who has been in the trenches for some time and was able to offer some advice as well as some insight in to what this disorder will bring not necessarily to Getty, but to me as her mother.

“Grief is a bitch. You will find yourself in and out of different types of grief. Some you will stay in for some time, while others will come and go and you may not even have time to name it. But it is there in all of its glory just hanging out when you are least expecting it. You may use it to your advantage some times. You may grow as a person, knowing it is there. It has the capacity to build friendships and ruin others. It has the capacity to ruin you or strengthen you.” Mind you this was about two weeks after Getty was diagnosed. The topic was a bit heavy at the time. I know she was trying to help but now that we look back on “the talk”, we laugh because for a newly diagnosed mom, I was no where near grief. I was in a fog and I could not function, even in a state of grief.

As Getty grew older her advice became apparent. I can’t speak for the SMA community, but what I can say is that I feel as though I am in what people call a state of anticipatory grief. We live in a purgatory, if you will, of grief that is really weird to explain. Getty is here and she is doing so well and we are loving our life with her and all of her awesome milestones AND Spinal Muscular Atrophy is still working its deadly magic in a form of degeneration. We don’t live in the negative, you simply can’t you will drown. But certain days seem to be more heavy than others. Certain kinds of grief step in as a place holder and whether I like it or not, it is present.

Anger is easy. Anger can hurt. Anger can hurt others. Anger for me at least is a result of not being able to take the SMA away from Getty. I can do x, y, and z, but at this point and time, SMA is still here. The monster lives. So who gets the anger? EVERYBODY, including me. I pass it around like it was candy. No one is immune to my anger when it is present. What does it look like? A short fuse, a sense of adrenaline running through my veins that can’t seem to be elevated with a good run. It is a pulsating feeling of failure that comes and goes. Sometimes I don’t even know it is coming until I have said something I should not have to another person. I try and take a step back and gain some perspective, then move forward. Anger lingers, anger isolates, anger is destructive.

Isolation is easy. Spending time within four walls of the house pretty much all day is safe and easy to be isolated. There are all kinds of ways to stay present and identified by others, but I know there are certain days that isolation is my “happy place” at times that I don’t care to share other types of grief. Isolation allows for great memory making times with Getty. I don’t have to stay connected with other people, I don’t have to feel the need or tug to get out and see other people, I don’t have to do anything. However once I am out and about I do realize that it actually is nice to see the sun (we have a huge drought happening in California so the sun is the only thing anyone sees). Isolationism is a safe place and is probably one of the “stages” that I often find comfort in and is hard to push myself out of. But once I do I always say, “I need to get out more.” :)

Acceptance and depression are two that I will choose not to talk about. They are both ever evolving and even though this is a blog and even though it is public, there are certain aspects of my life that I would rather keep to myself. What I will as is this……… depression is a bitch. In regards to acceptance, the only acceptance I have is that Getty was diagnosed with SMA at the age of 4 months. Other than that, that is all I will accept. Anything is possible and Getty will and is thriving, living life to the fullest and is given all there is to be in the world if she wants it, on my watch.

Which leads to a stage of grief I think I would like to name myself, The Best Bargainer in the West! I am the Queen of bargaining, the champ of bargaining. If you looked up bargaining in the dictionary, you would see my face, not the definition, because I am the definition. I am aware of this, I feel it coming on, I take full responsibility for my actions.

Let me explain. I bargain with SMA all the time. I bargain with the monster that lives in my home. This is our usual conversation.

“She is starting pre-school you can’t take her.”

“Getty got new clothes for school, you can’t take her.”

“We just got a computer for her to virtually be in her classroom so she can grow leaps and bounds both socially and academically, you can’t take her.”

“I just cleaned her clothes and everything is put away, you can’t take her.”

” Her room is nicely decorated and she loves it, you can’t take her.”

“Getty is tolerating and doing so awesome in her power chair, you can’t take her.”

” We aggressively have a successful respiratory routine, one that helps expand her lungs and helps to keep her healthy, you can’t take her.”

“Her birthday is coming soon, you can’t take her.”

You can fill in anything and end it with “you can’t take her”, I have done it and said it. Call it what you will but so far I am the champ in this rodeo in my need to bargain. While daunting and perhaps unhealthy, this is where I am right now. I bargain and I plead. I even verbally say on many occasions, “Take that SMA.”

Why do I do this? Not exactly sure. I need more time to psychoanalyze this, but I think some of it is my competitive nature. Most of it is to continue my consistent fight for Getty. Most of it is purely out of love. I am her mom, I am her protector, and I will go to the ends of the earth to make sure things get done. She has everything she needs to be offered all that life has to offer.

I know I don’t often write about topics as heavy as this, but this morning I needed to get it out and this is what I came up with. Maybe this will help another SMA mom or really anyone in grief. Maybe there are some similarities that one might be able to relate to. But as always, this is one mom’s perspective. My perspective.

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