This post is way overdue, but keeping-up with all that is Hazel on a daily basis (along with the sibs) has kept us from updating the blog. We also have felt as though we did not want to complain or disappoint since medically Hazel is doing just fantastically. At a year out from surgery we decided to hold off on her medication wean, as there is no rush and we have until about three years out to wean her. With a wean comes some risk of seizures returning and we are not ready for that possibility. For now, NO SEIZURES and it has been nearly one year and three months since her brain resection. This is the best part! She is alive, not seizing and happy as a happy clam.
The part that is different and hard to put into words is that our parenting life with Hazel is still extremely difficult and taxing. This is the part called having a Special Needs child. This has been a lot for us. Keeping Hazel safe from herself is a full-time job and unless she is sleeping, she is our focus. Hazel is developmentally about a 15 month-old visually impaired toddler, but in the body of a three year old. Don’t get us wrong, good things are happening in terms of developmental progression, but they are slow and take a lot of work by Hazel and us.
At this point Hazel continues to be basically non-verbal, though she says Mama a lot and Dad. This is due to the damage from her seizures, not her surgery. She also makes tons of playful noises. She is working with Speech therapists to communicate using pictures and special buttons she can press to make choices and say hello/goodbye. Hazel is happy through it all, smiling most always.
Hazel continues to have many sensory needs. She is VERY input seeking. This is great in many ways, as she loves to cuddle and a good massage. Difficult in that she always wants to put things in her mouth, bite, climb, explore, bounce, jump, etc…She is working with her Occupational therapists with different sensory diets of brushing, music, and swing.
The big milestone for Hazel, besides her Special Wish trip to Disney, was that she started preschool on March 2. She is a little Rocky River Pirate and attends the same school as her big brother. Hazel is in an inclusion preschool setting where 50% of the class has various Special Needs and 50% are what are known as “typical” kids. She receives Speech and Occupational therapies at school. Her teacher and classroom aides are top notch and they love Hazel. Today, she came to the car with her glasses on and they told me she kept them on the whole time. Amazing! I mean, these people are working miracles. She has glasses right now mostly for protection of her existing vision.
This Summer Hazel will continue her schooling through our school district’s Extended School Year program or ESY. She will also continue with her private therapies and our work at home. Hazel loves the backyard, her newly acquired bounce house and the pool, so we will be doing all of these things…a lot. She also loves her sister and brother. They are great with her, even when she bites or scratches them. They know it’s without malice, but it still hurts like hell and they are very brave and kind to her. As Helen says, “Only Hazy could bite and scratch us and we love her so much still.” Please keep them in your prayers too, as Ben faces a Summer of undergoing light therapy for his skin condition on his hands and feet. When not dealing with these brutal parts of life we will be playing tennis, baseball, painting, Minecrafting, vacation bible schooling, traveling, doing yoga and lots of ice cream!!!
Hazel's Blog 