I am so thankful for so many people wanting to help my family. From the bottom of my heart, this means worlds to my family. I am overwhelmed with so much support. I thank you all on Sherrin’s behalf.
But here is an update on Sherirn:
I am SO happy to be back in New Jersey with my family. Being without them for 2 ½ months was rough, but when I saw Sherrin’s face light up when I walked through the door, it was like I didn’t miss a beat.
Unfortunately, I really felt like I didn’t miss a beat. It seems like her progress is slowing down. It really isn’t where I would like it to be: she is still quiet with most of sentences, her wrists rarely move straight, and the toning in her feet has worsened.
For those of you that do not understand toning, it refers to when muscles in a person’s body become tightened to one particular position, which then makes it harder and harder to move those muscles to a different position. For example, imagine if you tucked your thumb in for an hour then try to move back to its normal position. It sort of hurts, doesn’t it? Now, imagine holding that position for over a year. That is what is happening to Sherrin’s feet and wrists.
I am starting to lean more towards surgery for Sherin every day. We have tried everything to stop the toning: Botox injections, Baclofen pumps, stretching, exercises, acupuncture- you name it, we’ve tried it. I have noticed very little, if any, change in Sherrin’s wrists from 6 months ago to now. Everyone says that surgery is the last resort, but to me I feel like we are at our last resort to save Sherrin’s body. Trying alternative methods to stop the toning has been taking too long, and I know everyone says to be patient, but the fact is that my sister has not been able to use her body correctly for over a year. Time is running out. It’s not like one day 5 years from now Sherrin will magically be able to move her hands normally as if nothing happened to them, so why not try surgery now? The way I see it is every day that we wait to do something drastic to help Sherrin then that is another day that my sister cannot move that part of her body. The time to save her body IS NOW. We’ve waited way long enough.
Also, unfortunately, Sherrin had two seizures earlier this week. She recovered from them completely, but Sherrin being epileptic is still something new for me. She always has the first seizure at around 4 am, probably related to the particular sleep cycle that she’s in that makes her more vulnerable to electric shock in her brain. If the nurses or doctors do not catch the seizure and give her the proper medication in time then she will have another. It’s scary and dangerous, but she does recover. She is very lethargic throughout the day and vomits any type of food or cold drink given to her. When she has a seizure, my parents and I want to comfort her by feeding her, but we often forget that she cannot stomach them. It’s a balancing act because she needs to be fed but we don’t want to make her sick.
Here are the positives:
I have been able to have lots of alone time with Sherrin this past week. This is when I like to test her on my own terms. Lately, we’ve been playing I Spy and Categories. For I Spy, I choose items around the room, name the color, and ask her what the item is. She looks around the room and guesses multiple times until she finally finds the correct item. I do this to test her eyesight and her ability to see color. For Categories, I use a revised version from the original game. What I do is name a topic and then ask Sherrin to name three items under that topic. I asked her to name three countries in Europe, so she responded with England, Italy, and Ireland. I asked her to name three ice cream flavors, so she responded with Vanilla, Strawberry, and Raspberry. I asked her to name three states in the United States, so she responded with Virginia, Wyoming (I have no idea why she said Wyoming- she’s never been there), and Florida. I do this to test her memory and her intelligence. She’s so smart J
My family also had the luck of getting a temporary apartment in Lincoln Park this week! We have officially moved from the hotel to the apartment. The apartment is a simple one-bedroom/one-bathroom that is bigger than the hotel room, cheaper than the hotel, furnished, and within a mile from the hospital. Since it is mostly just my mom in New Jersey, this is just enough room for when my dad comes on weekends and when I drop by every few weeks. My parents were able to sign a 3-month lease that then goes on a month-to-month basis- absolutely perfect for our situation! Finding a place that met all of our needs was almost a nearly impossible task, but I am so happy that we have more of a home to go to after long days at the hospital.
I want to say thank you again to all of those that donated to Sherrin. It means so much to us. We will be continuing to accept donations (for… forever) so if you were unable to donate to the WePay account there are still other options! Thank you to everyone who wants my big sister to come home one day hopefully very soon!