Summer is close at hand. For many SMA families, this is finally a time to be able to break out of their enclosed and safe places and venture out into the world. I remember when Getty was about two, we ventured out to the zoo and she loved it. Illness is no joke for any child with SMA and for any family caring and loving for their child with SMA. Following strict cleaning protocols means not only making sure the internal environment is sterile, but also making sure that while the winter could cause great havoc, staying indoors and creating a life within the walls of one’s house becomes the new normal. I have always loved Spring, but I think since Getty’s diagnosis, it has kind of taken on a new meaning. When spring rolls around, it is more of a symbolic meaning of breaking out and exploring, because summer is coming. Yes, germs are still around, but summer gives us more permission to venture out and explore without the possible chances of getting sick. Summer in California is kind of a mixed bag. In Sacramento, it can get a bit sticky and hot. 🙂 I have lived here my entire life and I often ask myself, “why do you do this to yourself?” There are so many other places to live that does not melt every fiber of your body. 😉 But here we are, here we will stay, even if it means finding every possible intervention to relieve the possibility of burning, melting, perspiring, and just overall feeling like melted goop. 🙂
So I got to thinking, and over the past seven years, we have tried all kinds of ways to help Getty tolerate the heat while we explore during the summer and I thought it would be fun to offer a giveaway to 10 families with SMA. We will be holding a giveaway starting (today) Thursday, May 25th and will be completed on Tuesday, May 30th at 5pm PST. All you need to do is email us at email@example.com with the following information.
-You and/or Your child’s name
-What kinds of activities will you be enjoying this summer?
-Submit a picture of your kiddo.
Super simple to enter. Please only send one entry. As always we are a foundation for individuals with SMA, so we will only consider those entries.
So what is in the giveaway? These are our go to ways to keep Getty nice and cool outside throughout the summer and we think your kiddos will benefit as well.
Thanks a bunch. We will be using random.org to randomly choose the 10 recipients. I will announce the recipients by 6pm on Tuesday, May 30th!
We hope everyone has a wonderful summer. Go make some memories!!!!!!!!!
Frogg Toggs Chilly Pad
Cool on the Go Rechargeable Mini USB Fan
Getty Owl Foundation Canvas Bag and Water Bottle (not pictured)
I thought blogging was going to be easy once we got to Getty’s treatments. I was hoping to jump on and post about all of the the stuff that has been happening, but man, this has been hard. There have been so many things happening and so much emotion behind it, negotiating what gets documented and what gets left out has left me in some paralysis. This is the best I can do for now.
First of all let me just say this for the record, Getty is doing awesome! She is patient, she is calm, she a soldier that just keeps going. So far not much has really bothered her. I think she is annoyed that we have to drive and stay in the hospital. Then there are times I think she appreciates the change of scenery, regardless if it is at the PICU.
Spinraza is administered into the spinal cord. I can understand how that alone can give one the heeby jeebies. Essentially a spinal tap every time this drug is administered. I WISH there was another way. But there isn’t at this time and this is where we are in this journey. We discussed this in great lengths as a family and we knew this was the right thing to do, knowing that the benefits might clearly outweigh the discomfort of an injection was what we wanted to invest in.
There were some things to consider before treatment:
-Getty would need to be admitted to the PICU for every treatment. While it is a burden (equipment, back up equipment, supplies, back up supplies, clothes, books, iPad, medication, and negotiating control), at the end of the day it made sense to us and I am glad our doctors are remaining as conservative as possible. I also appreciate their understanding that I am primary caregiver. I was not going to relinquish my responsibilities to Getty’s care to people that do not understand the nuances of SMA and Getty. The doctors and I agreed on a “drawn line” of care and we went from there. As long as Getty was stable and did not need any extra care (IV, intubation, etc.) I would remain caregiver. Deal!
-How was Getty going to handle all of this? She has always been a extremely calm and patient little girl, but would this be the deal breaker? We have been so hesitant to explain all of the details of this procedure for fear she would have so much anxiety. But after some discussion she was good to go. I wish I had a fraction of this child’s “whateverness”. Some side effects include headaches, constipation, respiratory distress, etc. Important aspects to be very concerned about post-injection. We could definitely remedy many of them, but some we could not, so we were very hopeful that the most extreme side effects would not rear its ugly head.
-The plan for the first injection was overnight observation. Again, not excited about having Getty remain all night. We were being housed in the PICU, where the most critical children go for care and often times that can be children with respiratory issues. Very nervous about sharing our space with the potential to pick something up. But, it made complete sense. Spinraza, while revolutionary, is still extremely new for EVERYONE. While there are side effects, we were not seeing very many of them come to fruition in the SMA community, so we were hoping we would be good to go. How on earth was I going to care for her if when we got her home immediately after injection if something did come up? I didn’t want to even put Getty into a situation like that. Thankfully after the first injection, Getty was doing so well, we were allowed to go home after the 6 hour observation regulation. The second injection on the 4th of April was also a limited observation stay and we were allowed to go home after the 6 hours.
The staff was terrific on both procedural dates. It was collaborative and transparent. We felt like this whole process so far has put Getty first. It is clear we are all working together to make sure she is thriving and we all have her best interest at heart.
Both injections have been done in one shot. Thankfully finding the exact spot has not been an issue. Getty has to lay on her side and remain in the fetal position throughout the few minutes of treatment. The worry as always, is her respiratory abilities to remain as comfortable as possible in a very uncomfortable position. The two doctors in charge of her care have been more that amazing. One does the injection, while the other holds Getty in place and monitors her respiratory status. So far, she has been doing amazingly. While the position is temporary, her natural position is not to have her knees into her already compromised chest cavity. So knowing she held her numbers just fine was a huge relief. Mark and I have been allowed to remain in the room while the procedure takes place. We are allowed to help get Getty into position before the treatment, which again, is a huge relief. Positioning a child with incredibly low muscle tone can be complicated and I appreciate the staff’s willingness to let us take care of her. All was taken care of in about 5 minutes (positioning and procedure).
Getty was just fine. I wish I could be more detailed but it was just that simple to her. She didn’t even wince when the needle went into her back. As her parents, were trying to compartmentalize what we “thought” she would be feeling, but again, our attempts to shelter her from any harm was futile. She was just fine and as long as Moana kept singing in her movie, all was perfect. In fact after the second injection Getty actually giggled. 🙂 I do not have a normal child. 😉
After the procedures we remained in the PICU room until discharge. All patients need to remain flat for several hours after the injection. Lucky for Getty, she already remains flat, so we just hung out and watched some movies, read a book, and just tried to relax as much as we could before loading everything up and driving home.
Post-treament has been a learning curve. It seems as though the next two after the injection, we just kind of lay low. Lots of increased liquids and around the clock Tylonel. Getty has not developed any of the side effects, thankfully she has been good. She is very tired for about three days. The first injection we did not go back to school for almost a week. After the second injection, I noticed Getty was more energetic and so in my haste I thought going back to school after two days should be good. Lesson learned for sure, she wasn’t ready and so we pulled back school for the entire week like last time. After the first injection we had some pretty crazy winds that brought some allergies for Getty. I think the combination of fighting off allergies and the 2nd injection just made her feel spent.
So the big question really at this point is what has Spinraza done so far for Getty? I think I would like to answer this in a few ways. First of all, we have no expectations. In the most positive way possible, we just want this drug to stop the progression of SMA. I cannot tell you how important that is to all of us. We have found a way to adapt this world to Getty and if we can halt this stupid disorder and let her explore in her own way without the the worry of what SMA is internally doing to her, that would be enough. Period! I have grown to learn that you can find the best diet, get the best education, best of the best for everything Getty needs to grow and thrive, but there is always SMA. SMA continues to take things from Getty and we can’t do anything about that. It is such an unsettling feeling. It isn’t fair and at times it can just feel down right shitty. However, what Spinraza brings to this equation and this journey is an ally. We finally have a medical ally that has the potential to support Getty in ways we simply can’t. This is the support we have been waiting for since July 30, 2010.
The morning of the 22nd, the day after the first injection we were already noticing some changes. I heard some robust yelling coming from her room. Getty has always had a nice loud voice. Non-verbal, but loud. Well I can tell you that her voice has become even louder and stronger. Getty has started to move her mouth up and down. Ever so slightly, but she is moving it. Something we have not seen since she was about two years old. While laying down and her legs bent, Getty can move her bent legs in an out with and without gravity. Again, something she has not done in years. Usually if you put her legs in a bent position, both legs will just kind of “frog out” and fall to the side. Now she is holding her own legs and making her own movement. The strength in her wrists are getting stronger. Getty’s ankles have also gained movement as well. I have been filming tons of footage but there has been no time to put everything together in a video yet. I am always posting videos of Getty’s progress on our instagram account. Gettyowl is the account name.
This has been a very emotional process so far. Watching Getty move in ways we have not seen in years is a bit surreal. By nature compartmentalizing has pretty much been the norm. When good or bad things happen, I need to keep as composed as possible. I do this for many reasons, one of which, if I truly allowed for myself to be vulnerable, I am not sure if I would be able to get out of bed. SMA is heavy for so many reasons. There are so many emotions that come with it and compartmentalizing has given me a chance to move forward in life, knowing very well Getty is also terminal. It isn’t normal and I am sure I will feel the effects of this technique at some point in my life, but for now it is serving a purpose. However, watching Getty move her jaw up and down and seeing the look on her face as she moved gave me allowance to lose it. I cried like I haven’t in years. The concept of having a drug in the world that Getty is able to be the recipient of and to watch the effects of it in front of my face has been a miracle in real time. Watching Getty move her legs in an out, by herself has been insane. We were watching Rogue One the other day and something pretty incredible happened. We are watching a fight scene and my guess was that she was feeling the intensity of the scene with movement. Kind of like when a person cringes with excitement, she was doing that with her legs. The quick movement in and out was her physical way of showing excitement. Beautiful!
Treatments are scheduled for every two weeks. There is a total of 4 “loading doses.” After the loading doses are completed, Getty will then receive treatments every 4 months. She is a champ and she is doing so well with everything being asked of her. We are so thankful that Getty is receiving this drug. There are MANY children and adults that are currently being denied this medication. Currently many families are fighting for care. Please keep them all close in your thoughts and prayers. Everyone with SMA that wants this medication should be offered it. Red tape is so very frustrating and so incredibly damaging to those needing the medication most.
Getty turned 7 years old on Saturday, March 25th.
Check out this incredible cake!
A beautiful cake that seriously blew everyone away! Fitting that the warrior chief, Moana stands confidently on top. Thank you Lorraine for all of your hard work and incredible talent.
Getty had a great day. Lots of smiles and squeals. She received some legos, Troll things, and lots of clothes. It was nice to have a day to just celebrate Getty. We didn’t need to discuss anything else besides how awesome it was that she was now 7 years old.
Birthdays are always a bit emotional for me. I just kind of compartmentalize everything until the festivities have finished and then I can have a little time while Getty sleeps to reflect on what 7 years mean. It is a big deal. Every single day, every movement, every celebration, every squeal. Everything is a big moment, and to know that we have had and will continue to have time to watch her grow and kick butt is just an incredible honor. She continues to teach determination and fortitude. Her little being continues to strive for all the good life has to offer. She makes everyone around her better.
Happy Birthday sweet lady. We all love you so very much and we stand in awe of your curiosity and strength to do every single thing you want to do without feeling any boundaries. Please continue to steer this ship, we will always be your loyal mates. 🙂
Tomorrow marks a very important and special day for Getty and our entire family. March 21st will be the beginning of a new chapter in her life. Tomorrow Getty will be getting her first treatment of Spinraza. On December 23, 2016, Biogen’s groundbreaking medicine called Spinraza was approved by the FDA. Since approval we have been discussing next steps with her doctors. We have been very impatiently waiting, as you might have guessed.
We have been waiting for something, anything, since July 30, 2010. It has been roughly, 2,340 days since Getty’s diagnosis. Being told your child would not make it to see their second birthday was a hit to the gut, head, heart, and soul. Looking into Getty’s blue eyes and being told that our time is limited just didn’t make sense. Looking back on that day, sitting together in silence not knowing what to think or how to even wrap our head around what our sweet Getty has possibly been dealt, when we just needed to look into her eyes and follow her lead. She has always been steering this ship. Getty has always been present in her wishes to blow life out of the water, every step of the way. She inspires all that meet her. She brings laughter and smiles to everyone. Getty is a powerful force that makes you just want to be good, bring good to others, and feel content in what life has to offer.
We are in a new chapter of life. We started out life without SMA, then with SMA, and now a new chapter that comes with a medicine to help Getty continue gallantly fighting SMA. We are just so thankful and incredibly mindful of what gift has been bestowed to Getty.
I made this video for Getty the day the FDA approved Spinraza. I was so overwhelmed with emotions on that day, let’s be honest, I have been an absolute wreck since. ;). To realize that in her lifetime there could be something to help support in her fight to live, was really too much to handle. So instead of processing it, I made a video.
This is what Getty decided to do after she was diagnosed with Spinal Muscular Atrophy…………….she decided to live and we decided to follow her lead.
We are so excited to announce our new 4 recipients of an iPad Mini. Thank you to the SMA community for supporting our foundation with your participation. While technology covers a vast spectrum, Apple’s iPad has really done a great job of creating a bridge to communication, socialization, and education for so many children and adults with Spinal Muscular Atrophy. Getty Owl Foundation is committed to giving as many people with SMA the ability to soar with technology.
We have witnessed first hand the remarkable opportunities Apple’s iPad has given to Getty. She can participate in recess play and visit family during the winter months with FaceTime. Math and spelling apps give Getty the ability enjoy learning and pushing herself to new heights. Watching and listening to audiobooks allow her to acquire language and develop her ability to imagine. Whiteboard apps, give her time to review and spell words. There really is an app for anything she needs.
Congratulations to our newest 4 recipients. Enjoy and soar to new heights. 🙂
20 years old
14 years old
1 year old