So this week has been hugely trying for me. I mean HUGELY! I have had such a range of emotions flowing and changing by the moment.
Monday, we had an appointment set up with our physical therapist and the local mobility company man to stop by and begin the process of choosing a wheelchair for Rebekah. We are still in hopes that Rebekah will one day walk, but with starting school in the Fall (I’ll have to explain more about this later), you must have mobility. Children must be able to walk or be in a wheelchair. So, we know that Rebekah won’t be walking by September, therefore we must have a wheelchair. Chris has a standing meeting every Monday with his team at work that he can’t miss. The wheelchair appointment was during that time, but since we were just gathering information, it was going to be ok for him to miss. Well… we THOUGHT that we were just gathering information. It turns out that they were wanting to go ahead and get one picked out so that everyone could start jumping through the hoops for the insurance company and other funding that we will have to receive. The therapist had already known what Rebekah would need and the moblility man narrowed our choices down to two. Rebekah could have one that was self-propelled and could probably be taught to use on her own in the future – or a stroller type wheelchair that would be more comfortable when we are out and about (we DO like to go out and about!!)
I decided to go with the stroller type chair from Sunrise Medical. This will give her lots of support and many positioning options. This chair will have to grow with her for three years before more funding will become available. (That’s the difference between her size and Kayla’s! Yikes!)
We have also decided to start Rebekah in a Mother’s Morning Out program. She was spending some time at a sweet friend’s house a couple mornings a week, but really seemed to be wanting more social interaction with other children. She goes a couple of mornings each week and just started this week. Her little class is five children with two teachers. She already seems to be enjoying it and her teachers are great!
Tuesday we saw Rebekah’s GI doctor to discuss her reflux AGAIN. Reflux seems to be the biggest trouble maker for Rebekah. We are constantly having to change medications or dosages. I was so nervous that the doctor was going to tell us that he was recommending surgery for Rebekah. Thankfully, we are not to that point yet and still have some other options. For now, he has adjusted her dosage on two of her medications and so we will wait for a few weeks to see how these settle in with helping with her symptoms.
Wednesday morning I met with our Service Coordinator from our early intervention program and the preschool coordinator for our county schools system. We are starting the transition process for Rebekah to start preschool in the local public school in the Fall. Early intervention in GA goes up to the age of three and then the public school takes over servicing the child. So in order for Rebekah to get any provided care, she will have to receive it at the local school. She will be evaluated by therapists and other teachers in the Fall to determine what types of services she will be receiving. Thankfully the Lord has placed MANY people in our lives who have been through this process with their children and MANY who work in the school system, who are ready and willing to help us through this process. I think Rebekah will enjoy being in a class with others and will receive great care while at school. Our plan is to also keep some private therapy also so that we can work as closely with Rebekah’s needs as possible.
Wednesday was another feeding therapy day as well. Rebekah has been asserting herself with our therapist and taking charge in the sessions. At first she was throwing fits and screaming and throwing up. All of these were deliberate tactics to stay in control. More recently she has given up on the extreme show of control but still spits food and refuses to open her mouth. While we are frustrated with her behavior toward our sweet Miss Jessica, we are at the same time, excited to see her stand up for her own thoughts and opinions. I will take her one more time next week to see Jessica and if her behavior doesn’t change, we will take a couple of months off from feeding and work at home on some exercises.
Rebekah also has had a haircut recently. She was starting to pull her hair throughout the day. Even though her piggy tail on the top of her head was soooo cute, we just couldn’t let her hair pulling become a habit. She looks beautiful with her short crown of curls!
Update: Bekah’s Blooms! I can’t thank you enough for all the support you have shown our family with this fun project. I have had lots of hands helping me keep up with orders and so many of you have passed the word along about our sweet blooms. Please continue to share our little blooms and think of us when you are looking for a small gift for a birthday, gift topper, or hostess gift! (Mother’s Day is coming!) I will be taking the blooms to two craft fairs later this month. I am so curious how they will do and would love to make enough to send another donation to the Foundation for Children with Microcephaly!
And as always, we want to thank you for your continued support and prayers for our family. We know that our strength comes from the Lord, who has made all things in heaven and in earth. The same God who made the moon to reflect the sun’s light, who designed the snowflakes, the elephant, and the changing of the seasons. He’s the One who has been to the end and knows the plans He has laid out for us. So we trust that we are just where He would want us to be and follow after Him closely.