Grade 1 - Spring 2013

Grade 1- Spring 2013

Another year has flown by and Darby continues to grow. Her muscles are still floppy and she wears a TLSO (back brace) all times that she is upright in her chair. Her school year was filled with weekly swim trips, IPAD work and a new sensory room that was created in a back room of the library. This sensory room is quiet and dark but can be lit up with a whole bunch of fun stuff in an instant. Darby attended Grade 1 with a lot of the same kids from her Kindergarten class as per the children's requests. This warms my heart since I know that Darby is there to teach and not necessarily learn. She is popular and will often blow a 'raspberry' and make the kids laugh as well. For the first time, Darby was actually 'disrupting' the class with her 'singing and goofy antics'. This may be a trend moving forward so we are lucky to have the sensory room to fall back on. Our assistant has been fabulous and continues to work as Darby's right hand and has made the year a happy one. Darby's health also stabilized somewhat (no hospital overnights) and she has not required surgery in 2013 so far which are two 'firsts' for us. She is still as sweet as ever.

Below is a letter that my Mom wrote to herself
about her journey and how she sees it today.

This letter comes six years after I first laid eyes on my baby girl. It is a letter that I wish I could have read when life decided to take a big turn back on September 12, 2006. This is what I would have told myself.

 

You are going to be all right. The pain that you are feeling right now isn’t going to last. You will grow through this process in ways you can’t even imagine. You will see yourself in ways that people have already seen you and it will fill you with love. You will be taking a road that is long and difficult and beautiful- sometimes all at the same time. You will come face to face with your biggest fears, cry many tears and you will still be all right. Your husband and family will stick with you. You will know a kind of love that not everyone gets to know and feel. Your daughter will teach you so much more than your four year under graduate degree ever did. You will meet people who will have open hearts and curious minds. They may even be strangers. You will inspire people around you, just for getting up in the morning and being you. You will get respect from people without asking for it and without working for it. Your daughter will bring a community together without having to utter a single word. Your daughter will be loved fully and deeply and, in her own way, show love and joy. The picture in your mind about how things are going to be is not your truth. You will find out what is important in life and love. You will be stronger than you ever thought possible. You will achieve much and you will do it with an open heart, a loving family and by following your truth.

 

You will be all right.

Kindergarten 2012

Kindergarten 2012

Spring 2012

Spring is a favorite season in our household because it means that all the nasty bugs that get into Darby's lungs are usually long gone. This winter was our worst yet. We spent a whole week in the hospital in February with pneumonia again. It was a really difficult time for the family and in a lot of ways, we are still coping with the aftermath- Darby continues to have a wet cough some days. Other than that, she is in good spirits. She had surgery for ear tubes again in December (right before New Years Eve!) and that went well. We have since been told that one of the tubes has moved out of the right spot and so another surgery is required. We will wait a bit until we can coordinate with another surgery. Darby recently went to see her dentist on an annual visit and things don't look good in the mouth- lots of cavities. This isn't much of a surprise for us since we feed her non-stop some days and sometimes she snoozes in between and she doesn't really swallow her smoothies or sugar filled formula. She also has lot of drool and lots of saliva to contend with! This mess will result in a 90 minute surgery sometime in late fall or early winter. Yikes! From an equipment standpoint, Darby has now transitioned into a Zippie Iris Tilt wheelchair. Here is one link: http://www.quickie-wheelchairs.com/category/Pediatric-Wheelchairs/549. She uses that at Kindergarten and an Otto Bock Hi/Lo Spider base for circle time and group work. Here is that link: http://tadpoleadaptive.com/seating-systems/hi-low/otto-bock-kimba-spider-hi-lo-base.html

G0-G0-Babyz

This product has allowed my mom or dad to take me in my car seat to medical appointments that are out of town.It is absolutely brilliant!!! Check them out @ www.gogobabyz.com