Bean Angels

As a sensory game, I have a bucket of beans that the girls will sometimes play with. This time they got spread all over the floor and Maia and Kassia started making Bean angels out it. It was a bit of a mess to clean up but they had so much fun, making it worth it.

Passing the Winter hours

 

 The girls like to hang out in our basement and playing. Kassia is a little mother and loves to tote around the baby dolls.

 

Maia likes to swing. We have a swing hanging from the rafters and they love having the option to swing in the winter time. 

Twinkle Toes

 

On Maia's 3 year check up the doctor was concerned about the amount of toe walking that she was doing. He suggested that we get her into some physical therapy to help with the toe walking as it can cause the ligaments and muscles in the leg and ankles to develop wrong. So we have done about 6 sessions of PT and Maia loved going.

   

She had so much fun running around and doing her exercises. These are pictures of her pt. 

 

Now every time she sees the Nationwide Children's hospital butterflies she automatically says, "My Physical Therapy!" 

A long over due update

I know I have been pretty quite for the last few months and there is several reasons for that. Between traveling and learning about how my body is changing, I have not been motivated or had the concentration to blog. I do need to let you all know how I have been and I think it is fitting to post today, as it is SMAS awareness day.

This week a year ago, on the 22nd I went into surgery to bypass my superior mesenteric artery and duodenum. I went into the surgery very hopeful that I would be able regain my ability to eat and not throw it bake up. I had been counseled that the recovery would take a lot longer then the 6-8 months the surgeon had said it would, like at least a year, but I thought that I was strong enough that it wouldn't take me that long. Then 10 days later I ended up back in the operating room to fix a late post operative bleed. The more I have reflected on this, I have come to the conclusion that this second surgery set me back more then I ever gave it credit.

Fast forward a year, I still rely on tube feeds to get enough calories and hydration to survive. I have put on about 8 pounds and am stronger then I was. Because of my tube, I deal with chronic abdominal pain and that probably wont go away till the tube is removed. I also deal with quite a bit of fatigue and although there is a lot I can do, if I do too much in a day, I pay for it the next day.

My treatment plan as of right now is to get me to be able to eat and drink enough to not need the tube feeds anymore. To do this I have been seeing a physical therapist who specializes in scar tissue in the abdomen and I also spent a month at my parents house where my dad, who is a chiropractor, worked on breaking up the scar tissue as well. I think that the work that my dad did and continuing the physical therapy here in Ohio, I should be able to regain my ability to eat and eat enough. I may never be able eat like I used to but to be able to survive on my own is my goal and I can deal with the rest.

I hopefully will be updating my blog with some of the activities we did over the past couple of months so you can see more of my cute kid's faces. Thank you all again for your love, support and prayers in my behalf and for my family.

I created this video for SMAS awareness day and as reminder that even though my year was spotted with hospital visits, that's all it was: spotted. The rest of the canvas was covered with a lot of joy and good memories.

2016

2016. In some ways you couldn't get here fast enough but in other 2015 will be a year that I will never ever forget.

2016. There is a lot of hope for you to be an amazing year, between what we have planned and the fact that I'm starting to feel better, you have a really good chance of being fantastic. 

2016. I am excited to experience your ups and your downs.

2016. I here to stay. 2015 tried to get rid of me but it didn't know my strengths.

2016. I know I can get through anything you have to throw at me because I have my husband and my girls by my side. 

2016. I know we have some big things happening this year but you will not break my faith, strengths or spirit. If 2015 couldn't do it you can't either.

2016. You are a new year, I am a new me. 30 hasn't looked better. 

2016. Let's just get along and play nice. It will be better for all involved that we work as a team. 

2016. Here we go!

Muscle Memory

Three weeks ago, I was walking down one of the sky walks at the Cleveland Clinic, with a friend who was so kind to go with me. I had just finished one appointment and I was headed to the next. We weren't in too much of a hurry as I had time between the appointments. This particular Sky-walks felt like it was half a mile long. As we were walking, I could feel the presence of someone coming up quickly behind me. Soon after my friend made a comment about the speed at which we were walking. I realized I had sped up to keep the person behind me from passing me. Call me competitive but it reminded me of the feeling that had been fine tuned during my many years of competitive running, so I naturally sped up. 

I have reflected on that experience many times over the last few weeks and I have been constantly reminded of how amazing the body is. I haven't been able to be competitive for well over a year and haven't been a competitive runner since 2008. The thing that amazes me is that the skill of spacial awareness is still very much there and my body, instinctively, did what it had been trained to do. I know that if I were to pick up a basketball today, I would be able to dribble a ball, and I would be able to shoot it (although it would be ugly). The thousands of hours I put in years ago still have left their impression on my muscles. Muscle memory is an amazing thing but it can also be frustrating. 

This was taken back in 2006

The frustrating part can come when your muscles have learned something that isn't good. I have heard from some smokers that have quite that it isn't just the nicotine that they miss but also the motion of smoking. Their arm is so used to bringing a cigarette to their lips that it miss the motion and the fingers miss, the cigarette that they used to hold. For me, it is my abdomen muscles and stomach that have acquired a poor muscle memory; Vomiting. 

While I was at the Cleveland Clinic, I had a montomitry test done that looks at the motility function of the esophagus. They put this awful sensor up your nose and down into your stomach and It measures the pressure of the esophagus. After the standard test was done, they had me eat some food to see what my esophagus would do while eating and while vomiting. I was extremely nervous for this test to be done because I was afraid that I wouldn't throw up and the test would be a bust. We'll I didn't have that problem and I ended up trowing up the Cheerios that I had brought with me. Once I started throwing up. They monitored me for about 20 more minuets to see what would happen when I would sit up, and lay down on my back and side. After the test was done they removed the tube and told me that Dr. Gabbard would review the results the next day. 

Normal peristaltic wave

Rumination event

When I received his phone call, he informed me that he thinks I have something called Rumination Syndrome, which is the involuntary force of the abdomen muscles upon the stomach that induces vomiting. In essence the muscles of my stomach have learned, due to the vomiting from the SMA syndrome, that is what they are supposed to do. 

At first I struggled with this diagnosis. I felt like this was something I should have been able to control and if I could have controlled it, then I wouldn't have had to put my family through so much. I felt guilty. I have had to work through that feeling and understand that this condition is INVOLUNTARY. It is not something I chose, I didn't choose to have SMA syndrome, I didn't choose to begin throwing up over 2 years ago, and I didn't choose for my muscles to imprint with the memory of vomiting. This is something that happened over time. Just like my muscles didn't learn how to shoot a basketball over night, it all takes time and it will take time for my stomach/muscles, to unlearn how to vomit. 

I met with a Dr. today who is going to be connecting me with the support that I will need, to help me retrain my muscles and hopefully get back to being healthy again. She wants me to do a form of Biofeedback, which I have determined it is going to be like Physical/mental therapy for my diaphragm and stomach. It should be fun right? It was very nice to hear hope in this doctors voice verses the hopelessness that has been effervescent lately. She explained to me that there isn't a lot of research that has been done on this syndrome and that it is more common in children and adolescents then adults and so although some of my symptoms don't fit the "Standard" rumination, they very well could be related to it. She is very hopeful that I will be able to regain the ability to eat and get this vomiting thing under control. She did warn me though that it will take some time but her goal is to get me off of the feeding tube and as she walked out of the door she said "and I would be more then happy to take it out right here in my office!" 

On a side note, to my friends who are familiar with animal, yes this is a syndrome named after ruminant animals, like cows and any animal that chews it's cud, but no I don't have more then one stomach and I would like to identify more with a giraffe. ;)

Thank you all for your love and support through this journey. I am praying that this is the answers to all the prayers that have been said on my behalf and am feeling hopeful for the future and to being able to regain my health once more! 

Missing

Yesterday I was walking down the stares and a thought popped into my head about my grandparents. Next month my Grandma will have been gone from this earth for a year and we just passed my Grandpa being gone for 2 years. An overwhelming feeling came over me and brought tears to my eyes. I cried little when my grandpa passed away but I didn't cry much at all when my Grandma passed. I think with her passing, at the time, it was more of a relief that she went the way she did verses the long drawn out death that her cancer would have offered her. 

67 years ago today, (10/17/1948), my grandparents were married and the creation of their family began and generations have been affected by their choice. And today, I miss them. I miss their smiles, their warm hugs, there long drawn out stories, my grandpa yelling "WANDA!" at my grandma to get her attention, and then my grandma telling him she couldn't understand him because he talked like he had a mouth full of mush. I miss their home in Salem and the childhood summers spent lazing about their house, using scooters around the block and climbing the trees in their front yard. I miss all the family gatherings we would have at their house, filling the house with laughter, kids running around, the wonderful smell of baked goodness oozing from the kitchen. 

It was a simpler time. It wasn't always happy but it was good. The foundation of many of my fondest memories were built around the life my grandparents had created. I love them dearly and today I miss them and I also miss what was. 

I always thought that grief was a process with an end date and should be accomplished with in a certain time period. I also thought that once you processed your grief that was it, you were done. No longer would the pains of sadness or longing for their company be there. You just move on. I have learned that this thought process is not only wrong but in a way harmful. Everyone deals with loss and grief in their own way and time and although there are healthy ways to deal with grief, it will look different for everyone. 

Media today, I feel, has depicted the "normal" grieving process for society. You look at most movies and if someone hasn't started dating again by a year after their spouse has passes away, they are constantly encouraged/badgered to "move on" and get over their loss. I think the stories/movies fail to show the raw human emotion that may be to tender to move on from. Maybe that person lost the one person who completed them so fully that they couldn't imagine being with someone else. Maybe that person will get remarried but years down the road. There are even certain circumstances were maybe that spouse had a long drawn out death which allowed their mate to grieve while their partner was still living, allowing them to emotionally move on quicker then most would anticipate. 

I have learned that grief is so personal and as unique as the person who is grieving. So although it surprised me yesterday to be overcome with feelings of sadness over the loss of my Grandparents, I am ok with it. I'm writing about it instead of pushing those feeling back into the box they came from. It is ok for these feelings to occasionally surface. For me it helps me stay close to my ancestors and helps me honor their lives. Because they lived, I live now.

 

 

Love you two!