Getty Owl Foundation

The Beauty of 27!

From Kate:

Since Getty’s 3rd month of life our family was introduced to an amazing lady named Morgan Saunders. She is the kind of human being that understands love and commitment. Ever since she has been taking pictures of Getty, they not only have formed a bond, but we feel like Morgan is a part of our family. She has been with us through the good time and those times when we had no clue how much time we had with Getty. She has remained ever so kind and gentle with Getty and I know that Getty’s love is mutual.

Yesterday Morgan took pictures of Getty’s 27 month pictures. I know it is a little unorthodox to take pictures at all kinds of random months, but that is our life, unorthodox.

After each photo shoot, I simply cannot wait to see what comes of all of her pictures. And without fail, Morgan finds a way to capture Getty’s zest for life and personality.

Here are a few:

Oh our little lady is growing up so fast and so beautiful and as usual, we are just in awe of her spirit. We have shared 27 months together.

Inventory:

Estimated days spent snuggling together and counting!

Naps: 820

Slumber parties: 820

Estimated amounts of books read and counting!

15 x 820= 12,300

Time cherished and counting.  😉

Our beloved Morgan has chosen to study abroad in Australia for an entire year, starting in July. We will miss her so very much and I know Getty will miss her big sis for sure. Don’t worry Morgan we will ALL be here when you get back and ready for another photo shoot. We love you and your experience in Australia will be such an enriching experience. We know that you will exude love and cherish all who you meet there. Safe travels our friend. And if you can, bring home a kangaroo for Miss Getty.

Recon Run: Mission Complete

From Kate:

This may be a long post, but please know that there is a method to my madness (or long winded post, whichever you’d like to call it).

Before Getty, I used to run a lot. A lot. I had not ran a marathon, but that was next on my list. The planner in me had literally scheduled out all of the training weeks and races leading up to the California International Marathon. I was preparing for that grueling 26.2 miles for the entire year really. I was in the middle of a 4th of July run when around the 4th mile my body completely shutdown. Like I couldn’t move at all. Turns out that was Getty’s way of telling us that a) She was here (we had no clue we were pregnant) and b) That I needed to chill out with the running and take a break. So after the tests came back positive and we were with baby, well I pretty much stopped all activity.

I knew you could exercise but I was so freaked out that I would hurt her, that I seriously stopped cold turkey. I walked, but that was pretty much it.

At around 8 months I purchased a Road ID bracelet. You can put all kinds of information on it just in case of an emergency on route, etc. There was one line left on the bracelet that I could add info, but I didn’t have anything else to add. So I wrote, “Doing it for Getty!”

Mind you we had not “met” Getty yet. Turns out she waited well into 41 weeks to meet us. 🙂 But there was something weird about me writing that on the bracelet. What was for Getty? And why was I putting that on an emergency bracelet?

Life has such a weird way of staging events that will happen in an uncertain future for just the right reasons. Since Getty’s dx I have not run, I have not exercised , I have not broken a sweat like I used to everyday. My time and my devotion is to Getty and only to Getty. In my mind and in my body, every day was like running a marathon.

Making sure she had everything she needed, constantly monitoring her, suctioning, preparing for what could happen and when some scare would occur, breathing treatments, being able to jump in a nano second to fix the problem and remedy a solution. Sometimes it is as simple as repositioning and then to the opposite extreme; resuscitating her. My legs may have needed a good run, but my brain and my heart were working overtime. Caring for a child that is so medically fragile can fatigue you and you don’t even realize it because it becomes routine and your new normal is normal.

I was not eating, I was losing weight, I was in this anxiety ridden world that I could not break from. I was just so scared that if I was not hovering over her, that something drastic would happen and I would not have my “A” game to help her.

What I am learning now, and mind you very, very slowly is that I can’t be the best mom I can be unless I do break away and get time to do things that make me feel good, like running. I remember the first time I geared up and put my running shoes on for the first time in well over two years I just cried. I cried because I was leaving her for a half an hour for myself. I felt so guilty. But I will tell you this. After I put on my shoes and I reached for my timing watch, my Road ID was leaning right up against it. I grabbed it and put it around my wrist and saw the inscription of “Doing it for Getty”, and I knew I needed to get out, sweat, run and burn off all of this frustration I have been harboring for so long.

SMA frustration sucks, hands down. It comes in all forms and that first run I took was an amazing experience. I felt my legs move at a speed I remembered and cherished. My knees were a bit weary, but strong. Overall I did run for a half and hour and it felt awesome. I have no idea how far I went, but whatever the distance it felt like a victory and I wanted to celebrate. I ran inside the house and could not hold Getty long enough. The guilt I thought would follow me on my run had gone away and I even started to think about the next time I might be able to get out.

So fast forward to last Saturday. The Recon Run in Tracy was simply unbelievable. I wish I could bottle it up and keep those memories alive for my entire life. It felt invigorating, it felt empowering, it felt right. I did not want my Road ID to take the burden of all of the mud, but I did bring it with me, to remind myself that I am a better mom for Getty because I was doing something that was helping me mentally and physically.

We had such great support that day. Well over 20 people participating with us. We all had on the same t-shirt. SMA Warrior seemed to be a very fitting statement

I got the privilege to be with two other SMA moms, Meri and Jen you gals rock! It was an honor to be there with you. Two members of our GOF board was there as well. Takoa and Morgan, we kept together as a team and “killed it.”

The run itself was something that I think all people need to experience. The very first obstacle was a water slide to a pool of watery mud. Once I hit the water, there was no going back, it “was on!” And that really was the theme for the entire run. Tires, carrying bags of sand, going over and under into muddy water, jumping over 4ft walls, running up and down sandy dunes, etc. But you know what there was not one time I wanted to even complain. I kept thinking about the phrase, “We run for those can’t”. I had no business complaining when my daughter fights for her life every day. So I kept pushing and pushing.

The 12ft wall I was so worried about, nothing but a few planks of wood and a rope. We scaled it like it was no one’s business, it was awesome. I can’t even swim and the last leg of the race as swimming. I had no business being in there, but I did it with the help of my team.

Running across the finish line was a complete affirmation of strength, both mentally and physically.

Rejoicing as a team was a great experience. Hugging and cheering for a job well done felt so good. Oh and the beer was freezing cold. No one got hurt. 🙂

I have learned many things since Getty has graced us with her presence. One really important lesson is to listen to her and follow her lead. She has never led me astray and I think she has been telling me that I need to get out and do what I love to do. She is right, it only enriches our time together.

So Mark and I have been working on a new schedule that will give me about an hour a day to get out on the road and exert whatever I need to get out of my mind, process what is in my mind, and give me the time to clear my head and heart so I am ready for Getty to fill it up once more.

There are a few more races this summer that Team Getty will be entering and there are a few more Mud Runs that the SMA Warriors will be participating in and I can’t wait.

I think the only thing I would pass on is the gravel in the teeth. That was a new experience. 🙂

Here is a collage of the Recon Run. Some pictures were off the website.

Baby Steps with Dad

From Mark:

Today was shaping up to be just another Saturday. Mom was out of town in an effort to destroy SMA with some other SMA warriors. I was home, having some coffee and making Getty’s food for the day.

It dawned on me that it was Father’s Day weekend. Then I thought I would love to do something special — just Daddy and Getty. I instantly decided Getty and I were going to go have lunch out on the town.

It may not seem like a big deal, but since Getty lost her swallow function, about two years ago to this day, Kate and I have NEVER taken Getty out with only ONE adult present because (1) Getty has a bunch of unwieldy equipment; and (2) Getty can find herself with an instant airway obstruction thanks to SMA taking her swallow and cough functions.

I was reluctant to take Getty out alone. I reminded myself that I know the drill and I can handle it.

Getty and I took off for lunch! I was a bit nervous in the van with Kate absent from the back seat, but it wasn’t too bad. I picked The Streets of London Pub mainly because  it’s one of the closest places to home should I need to return in a hurry.

Getty and I had a fabulous lunch and enjoyed some great father-daughter time together. Our server was nice. I told our server we were out for Father’s Day and she was delighted.

After quietly singing a couple of Getty’s favorite tunes, she spotted the soccer game on the TV across the room. Suddenly, she wasn’t so interested in Daddy anymore. Oh well, it was still a good time.

I had discreetly hidden her G-tube, feeding pump, and feeding bag. I wonder if our server thought it odd that I ordered no food for Getty and ate the whole meal myself without offering Getty so much as a crumb.

In all, we had a great time out and about. Going out alone was a new experience that will hopefully lead to more opportunities for Getty to see the world. What began as a ho-hum Saturday turned into a day I will always cherish. I loved sharing these baby steps with my little girl.

Here we are at Streets in West Sacramento, California. Yes, our first trip out as a pair was to a pub — not the zoo, toy store, or a park.

PS: I put her on bipap (the nose mask in the photo) because it provides filtered air to help prevent germs and also helps her blow her own spit out so it’s less likely to get down her throat.

Recon Run? Oh For Heaven’s Sake!

From Kate:

This past April some incredible SMA mommies ran in a mud run to which I was not able to participate in. Our Getty Owl Run/Walk, moving, settling in, and finding Getty a new routine kind of left my tank on empty. I thought for sure if I participated I would end up stuck face down in the mud left to suffocate.

The Mud Run was a huge success for them. Money was raised, bonds were made and I could tell that there was an amazing sense of accomplishment they all felt about completing such a  physically challenging run. Add to that to  have so many SMA mommies together in one place at the same time is so hard to do. I was jealous, I’ll be honest.

So the same SMA mommy (Crazy Meri) nudged us all to do another mud like race. The Recon Run this June 16th, is less than a week away, taking place in Tracy. I’ll just say a few things about this “event”. I peeked at the map and when I saw the 12ft wall we need to scale over and the barbed wire to go under? Who does that? Well I decided I would no longer look at the map. It is was it is and I am in! I get to participate with some incredible SMA mommies (Meri and Jen). Takoa and Morgan, friends and board members will be flanking both sides of me to make sure I remain upright. Miss Angie, who helps me take care of Getty and her friend Iris will be there in support as well.Well over 20 of us in race shirts and bandanas.

I am not sure what to expect but all I know is that I am in good company. I look forward to running alongside my fellow SMA mommies. I can only imagine the kind of adrenaline that goes through one’s body to complete this kind of event. I am nervous but also looking forward to it. I can’t wait to get all of my SMA frustrations out into something productive like scaling a wall, soldiering through mud, and pretty much being yelled at by a drill sargent. I feel like I need this kind of extreme torture to prove something? Not sure what yet, but I think it must be something SMA related.

As I write in my comfy chair and my clean clothes I guess I would say right now this race will symbolize my journey so far with SMA. I hate it and I want to beat the crap out of it. So every challenge on that route on Saturday will be another slice of what SMA means to me.

Now Saturday will be another story, I might turn into a mouse and run away and hide in my car. 🙂  But my hope and my goal is to push through every challenge with strength and dignity. Another hope is that afterwards I feel a strong sense of accomplishment. Lastly, I hope the beer that they promise to have at the end of the race is super cold and refreshing or someone will pay dearly.:)

We are raising money for Getty Owl Foundation for this the Recon Run. If you feel compelled to donate to this crazy mother, I thank you in advance. I would like to thank SMA Mommy, Heather Scanlon for raising an absurd amount of money for Getty Owl Foundation already. Unfortunately, she just found out that she will not be able to join us this Saturday. Girl you will be missed but with us in spirit! Thank you for working so hard to raise money. We really appreciate it.

Updated post to come soon.

Our Bathing Beauty!

From Kate:

Last year around this time, the weather was absolutely gorgeous, like it is now. I was inspired by seeing so many SMA kiddos enjoying swimming with their families and really soaking up the sun and honestly taking advantage of the summer weather.

RSV Season is technically “over” after Memorial Day Weekend and from that time on it feels like a race to get in as much sun, activities, seeing family, experiencing life and slobbery dogs you can until October starts to rear its ugly head.

Although as a mother I have begun to make some concessions about Getty’s exposure during  next year’s RSV season, it will still be crazy to most people and it will indeed contain the incredibly insane cleaning protocols that have been instilled in our home and exposure to others.

Okay so going back to last year. I was fascinated by this particular pool. It was one of those soft pool contraptions that could be set up and taken down “easily”. I have those, “Getty should have this”, moments and we found one and I put the darn thing together that night. I was getting eaten alive by mosquitoes, but they were no match for my quest to get Getty into that pool.

Water was added that night and the idea was that by like two days it would be fit to jump in and experience our summer, poolside. On the first day of waiting for the water to get just right, we had Getty in her stroller in the backyard and some thing strange started to happen. Her heart rate began to elevate into the 140’s. Didn’t think much of it. Her O2 levels were fine and she did not seem uncomfortable. Then as I started to walk her around the backyard, her heart rate started to kind of spike into the 160’s and 170’s.

Getty had never been sick before. This roller coaster of HR numbers had us worried but not like crazy worried. We took her inside and tried a couple of things to see if the numbers would decrease. They didn’t and that night was our first indication that something was not quite right. She had been teething for the past couple of weeks big time and so we truly chalked it up to pain. Back and forth we went from Mortin to Tylenol and while it did drop it down some, something was just not right. Since Getty’s diagnosis I think Mark and I were just so sensitive to watching her O2 levels that the HR was one of those things that could be several different ailments or remedies, all we could not render.

Then two days later we were in the PICU and there we stayed for two weeks. Getty gallantly fought off her illness. Mark and I almost killed a few employees and I think we managed to get about 10 hours of sleep between the two of us. And all the while our pool remand in place, heating with every summer day.

So fast forward to yesterday. I decided to lower my standards. Did we really need a gigantic pool? Where on earth would this thing go anyway? And in a really weird way I did not want to sabotage Getty’s great health with the same pool. I guess you could call me a little superstitious.

So Mark ran to our neighborhood Lowes and he bought a cheap kiddie pool.

Added water to it and our backyard turned into a Hawaiian paradise for Getty.

Getty’s makeshift bikini, she grew out of last years. 🙂

Hi beauty.

Hanging out poolside.

Trying to figure out if she likes it or not.

Look who’s swimming!

Post swim snuggles

We had a wonderful time yesterday. Getty got a chance to experience something new and she truly enjoyed it. It was awesome to watch her move her arms and her legs and to do it all by herself. The water was a bit cooler than her bath time and so there were some seconds of surprise on her face. Then I think she realized that it wasn’t a bath and she was very happy. I asked her today if she would like to go swimming again and she gave me her intense look, which is code for “duh Mom.”

Mark, Cooper and I were able to also hang out poolside and enjoy the remains of the day, together as a family. It gave us a chance to kind of reflect on how far we have all come as a family since last year. Cooper still tried to eat our dinner, so he did not learn anything. 🙂 But it did give us pause to reflect on Getty’s continuing good health. SMA has a way of changing a person. Good or otherwise, one thing is for sure, we are all still here together and we are just so thankful to have our little mermaid with us.

She continues to flourish and with that, continues to inspire us to keep on, keeping on.

Well time to fill the pool up again for tonight. Hope everyone had a great weekend.