Yum, Solids!
From Kate:
Labor Day weekend brought a few firsts in the Storm household. Sunday, Getty and I enjoyed a great walk with Takoa and her two beautiful children, Mady and Charley. The walk and the conversation was much needed and we enjoyed looking at all the nature around us. Thank you Takoa for your support and time.
Getty tried solids for the first time. A bit of rice cereal was not to Getty’s liking. She opened her mouth when the spoon came to her lips and then she spent more time spitting out the contents. It was very fun to watch.
Another first was for Mark. We ate in old sac and found that the restaurant
we ate at did not have an elevator, so daddy picked up Getty’s stroller with her in it up three flights of stairs. Thanks daddy!
Tonight my Mom and I tried rice cereal again. Thinking Getty was not going to be interested, we were pleasantly surprised when she happily opened her mouth and happily swallowed every helping. Followed by a quick rinse of milk and she was a happy camper. Way to go Getty!
Tomorrow is a big day. The doctors that formed Team Getty at Kaiser will all be meeting with us, we look forward to meeting everyone.
The picture I am attaching is Getty and her new friend, “crunchy” Lion. She gave him her formal licking, so we know he is now a member of her animal pack.
Goodnight little owl!
7
Sep
2010
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2010
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Teammate
From Kate:
In roughly a month, Mark and I will be celebrating five years of marriage. From the moment I met Mark I knew I was spending time with a wonderful man. He is engaging and when we would go out on dates I knew that to him, I was the most important person in the room. He is patient and he is deliberate in his word.
I remember when we found out about Getty’s arrival, we both were a bit shocked, but I think inside we both were so ready to become parents. As the months went on Mark went to every appointment, participated in every parenting class, and also was willing to rub my throbbing back in the last months of pregnancy. Mark has always been present and willing to lend a hand. We were a team.
In the labor room, he as there, actively making sure I was comfortable and coaching me along the way. We were a team.
Getty’s arrival has not changed Mark, it has just made him an even better husband and now father. The characteristics I have always appreciated in him have become even more apparent.
He is an amazing father. After going back to work after 6 weeks of maternity leave, he and Getty created the “Daddy & Getty Club”. A very exclusive club that developed a mutual love for one another. So exclusive in fact that there were times when I would come home from work and Getty would look at me as if to say, “Mom you need to wait your turn, I am with Daddy right now.” It melted my heart.
Mark is conscious of Getty’s needs and he is always doing his best to give her and I love and attention.
Our marriage has obviously been tested with a diagnosis of SMA. Can you nurture a marriage and a child with the same kind of care? Can two individuals who are equally consumed by grief, take care of each other? I can say this much as of right now, I wouldn’t want to be going through this journey with anyone else but Mark. He is Getty’s favorite guy, and he is my teammate. We are doing this together and I appreciate his love for both of us.
Five years ago I agreed to be a part of a team, but at the time I was not sure what that entailed. Now it is obvious what it takes to stand together and walk this journey together.
Mark, I thank you and I love you.
5
Sep
2010
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2010
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Mama Bear
From Kate:What a week it has been for our family. Mark is back in the swing of things with work and I am now two weeks back into school. We are finding that the regular stresses of work, add on top of that, the unconscious emotional pull, and it has really zapped our energy. By the time 8pm rolls around you can find us all ready for sleep.
I hadn’t thought about the emotional toll the body goes through. I mean I knew I would have my moments throughout the day, but what I wasn’t ready for was the constant and unwavering blanket of grief that seems to follow me throughout the day. It is like a shadow at all times of the day and it slowly zaps my energy. I am thinking of Getty, I am grieving her condition, I am thinking about Mark and wondering if he is feeling the same way, I am thinking about the future, I am thinking about the present, and all the while holding up my end of the bargain and trying to be the best teacher I can. Exhausting is really the only word I can come up with to describe it. So the majority of this Labor Day weekend will be for sleep and snuggles.
Yesterday was Getty’s barium swallow test. We weren’t sure what to expect. We knew she would be given a series of x-rays to determine what her strength was, but we were not sure if we would be given information at that point or if we would have to wait until the 7th when we see all of the doctors.
Mark and I were a little frustrated with radiology. They didn’t seem to know how to make Getty comfortable while also x-ray her. Because Getty can’t hold her head up on her own for very long, it was difficult to feed her, hold her head, and do the x-ray. Mark and I saw that “their way” wasn’t working, so we took charge and made sure Getty was as comfortable as possible. My Momma Bear instincts came out immediately and I swear if I wasn’t a civilized person, I would have given that technician a piece of my mind.
Fortunately the speech therapist gave us the news immediately after the screening. She determined that Getty’s swallowing was normal. Normal like a regular 5month year old. I can’t tell you how incredible that sounded to our ears. She felt that we could start trying some solids. We are really excited to jump in with solids and give her some more variety aside from the usual formula.
Stacey came over for dinner and we gave some more discussion to a craft fair that will be coming up soon in Getty’s honor. When we have all of the details figured out I will definitely pass the word along and if anyone in the Sacramento area would like to come and spend the day looking and buying some incredible crafts, know it will be for a great cause. Stacey thank you for your kind way of helping our family. You have been an absolute gift to us.
The picture I am attaching is a picture of Getty in her new official owl hat. Stacey knitted it with great care. Thank you so much, it is just precious.
3
Sep
2010
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2010
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Girl’s Trip!
From Kate:
“Road Trip”! Getty and I got a chance to get out of town this weekend. Getty got to see and spend time with her beloved Auntie Krista & Auntie Chris and Miss Pixie P. The weather in Oakland was terrific. I was looking forward to bringing Getty for some time. The bay has a great feel to it. The weather, people, and places are so inviting.
Last night we slept in a big comfy bed and Getty’s eyes got huge as she looked at the big fluffy bed. We sat up and I told her a couple of stories about a little frog and his friends in the pond. She giggled and as I told the story she had her hand on my forearm. As the story went on I noticed her moving her hand back and forth caressing my arm. It was so precious.
We enjoyed a long walk around Lake Merritt. There were all kinds of birds and people walking around. She enjoyed watching each and every thing pass her by.
Krista and Chris thank you for your hospitality. Thank you for your love and support. Getty loves all three of you so much.
Our trip home was short and quick. We wanted to get back to Daddy as soon as we could. I could tell that at times she was looking for Mark, especially last night. The reunion was tender and sweet. Kisses and hugs were plentiful.
29
Aug
2010
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2010
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Gratitude
From Mark:
I continue to be amazed by the outpouring of love and support from family, friends, and total strangers. SMA families and others who know nothing of us beyond some knowledge of our current situation have generously offered and given so much to ease the hardships in many different ways. It is difficult to find the proper words to express our gratitude, but thank you.
Thank you.
Something else that really helps take the edge off is our evening walk in the park. Cooper gets in a good run. Getty loves looking up into the trees (probably looking for owls). Kate and I get a chance to unwind and enjoy some family time together. Good times.
27
Aug
2010
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2010
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