Michelle's First Entry

Hi Everyone!

I actually started this page almost a year ago.  I thought we would use it to update friends and family on Eva's progress once her gene therapy trial started.  A few days ago, we found out that the gene therapy trial is possibly on hold until 2023.  This is devastating news to us.  I thought this site would be an easier way to update everyone all at once.  This way, Brendan and I do not have to go through the emotions of explaining that the trial is on hold over and over again.  

2021 did not end well for us at all.  For the past two years, I began to struggle once Eva's birthday hits because her birthday marks the passing of time, and the closer we get to more serious symptoms.  After her birthday is the holiday season, which causes more feelings of frustration.  This Christmas, Brendan was isolated with Covid, and two days after that, we all had it.  To be still dealing with the effects of Covid, and then to find out we may have to wait over a year for the gene therapy is such a blow. A year and a half ago, Brendan and I were given the instructions to avoid crowds, and keep Eva as healthy as possible.  Colds and sicknesses from the adenovirus could build up her antibodies to the adenovirus, which is the vector used in the gene therapy trial.  If Eva has too many antibodies to the adenovirus, her body will reject the gene therapy.  After a year and half of social distancing, we are each planning a small trip this year to boost our morale.  At this point, we have had Covid, and now just need to avoid additional sicknesses.

Eva is doing very well all things considered.  She was excited to go back to school today after break.  When she goes to school, she works with her TVI (teacher for the visually impaired) daily, she also works with a mobility specialist who helps her with her cane skills, she has a one on one aide, and she goes to speech once a week.  The start of the school year was a lot of change for her- a new school building, and lots of new staff members.  We love everyone at her school- many of her old teachers still check in on her, and stop by and say hi to her when they can.  Her aide, Mrs. Workman, is awesome, and will text me pictures of the fun things my baby is doing during the school day.  She does not know how much that means to me.

Eva is very frustrated that she doesn't read.  This is the biggest frustration she has with school.  She wants so badly to be able to hold a book, and read the words on the page.  She even volunteered to read a book to the class, and memorized the book, so she could read it to her peers.  I was so proud of her.  I have always admired her spirit.  She does not realize how proud we are of how far she has come with Braille.  She had to go to summer school because her Braille skills were regressing, but last night she correctly identified A-J for Brendan, and 0-9.  

We also signed Eva up for disability services through the Cuyahoga County Board of Developmental Disabilities.  We are allotted a set amount of money for Eva.  In addition to her team of people at Nationwide Children's Hospital in Columbus, she also has a team of people who follow up with her through the county.  They have recommended things for Eva, and we can request that they use the funds dedicated for her to purchase them.  Last year, we bought her a bean bag chair, rotating, divided plates to make eating easier, and paid for her horseback riding lessons with these funds.

Vivian and Everett are also doing well.  We signed the girls up for horseback riding at Camp Cheerful, and they love it.  After a year of doing nothing, we decided to let each kid do an outdoor activity.  Vivi rides a horse named Cody, and she now rides without any lead.  She started middle school this year, made some great girl friends, and joined a few clubs.  She is truly blossoming, and it makes me a little sad, but excited at the same time.  Everett's activity was soccer.  Once he started, he loved it.  He will play again in the spring.  His teacher had great things to say about him at conferences, and we found out he is very good at math.  We are working on spending one on one time with him especially because he was so little when Eva was diagnosed.  He will sometimes ask me things that surprise me, like, "Mom, was Eva born blind?"  Vivi is old enough to remember the journey, but Everett has never known anything different.  With Vivian going to middle school, Everett is now her helper when she gets off the bus and makes her way to the house.  I think he has come into his own a little, and realized that there are things he can do to be helpful, and he does not always have to wait for Vivian.

People are always asking what we need.  We need love and support.  When we talk about Eva, we need to be told that we can do it.  Sometimes people tell me they don't know how I do it.  I don't have a choice.  Last year, my word of the year was can, because there were so many things I faced that made me think, "I can't do this." I had to change, and tell myself that I can and I will do whatever is put before me.  This year my word is open- I think I need to be more open about what I need.  Starting this site was hard.  It feels too formal, too real, but I think it is needed.  I've had to open up a little to Vivian's friend's moms because I need them to know that we are trying to not get sick.  We will hang out with other families, but only if everyone in the house is feeling 100%.  I need other people to know this, so I feel protected and comfortable letting my kids go to their houses- especially if we have to keep this up until 2023.  

Eva's next appointment at Nationwide is January 24.  They are always 8:00AM appointments, and last a few hours.  There are about six people who evaluate her every six months.  They do a cognitive evaluation, memory test, mobility test, etc.  It is very difficult for me because, even though I know their intentions are to help her, it just feels invasive, and I just want to take her home.  They also ask us how life at home is going, and how she is doing at school, and they will make recommendations for her IEP if needed.  Keep us in your thoughts that day, and send us some positive vibes.  We have friends who donated gift cards, money, and toys for the kids when we thought the trial was happening last spring.  I plan on using those items on days we have big appointments, or days we are struggling this year as we wait some more.

Thank you so much for caring about our family.  With love,

Michelle