(Chris, Bekah, FirePapa, Nana, Kayla, Valerie in CA)
First of all, these days just keep passing by me at such speed that I simply can hold on and pray. I am so thankful for God’s love and mercy, and for coffee!
A lot of you know that we had been to see the GI doctor a couple of weeks back and he has agreed that Bekah can have a g-tube placed. We have struggled over this decision for years but we now know it is time to have a tube placed. This will help keep her on schedule with feedings, free my time up from having to try to get enough calories in her for each day, and we will be able to control the nutrition that is going in. Bekah will still eat by mouth as much as she wants, but we can guarantee that the calories, the nutrition, and the fluids are all there for her. We went for the upper GI scan and everything was cleared for her with the placement. We just had to wait for the office to schedule. Well, we waited and waited. I called yesterday and the doctor had never told the girls to schedule the placement. They said that they could do it on Friday (two days away), or on Monday/Tuesday (Chris would have to really fight to be off), or after Christmas. Dr. Meyers really wanted to be the one on hospital rotation so he could check on Bekah. We would be in the hospital for two or three days if everything worked out perfectly. So since we are looking forward to going to SC for Thanksgiving and excited about the Wheelers coming to our house for Christmas, we decided to wait until after Christmas for the placement. It’s really only about seven weeks – which with everything going on in those weeks is going to go by so fast. They are working on getting us either the 31st of December or the 2nd of January. I’m a little disappointed but know we made the right decision.
We also had an appointment with Bekah’s wheelchair company. He said that she is growing really fast and will probably need a new chair in a year or so. We’ve only had this one for one and a half years and the insurance refuses to pay before three years. He is ordering a new base for her chair and a new chest strap. He is very attentive and has a special needs son of his own.
We are also trying to get a mount for Bekah’s talking device. This will mount it to the wheelchair so that she can have her device out all the time at school and when we are out. The company basically told us to pick what we would like/want and they will try to get it for us. We are looking for something for her chair at home, her wheelchair, and a floor mount for at school because she sits in a few different chairs throughout the day. It is a little overwhelming without having direction from a professional. Right now we go to private speech therapy on Monday and Friday afternoon at the end of the school day. This is a great change for us from Wednesday and Thursday morning. It is a lot less rushed and we don’t feel like we are missing out on so much at school. Bekah works with “switches” on Monday playing computer games with the therapist. We’ve also bought a subscription so that she can play these games at home. Go to www.helpkidzlearn.com to check out some of the games.
(Bekah at private speech therapy with Miss Elisabeth – look at that concentration! Kayla is always right there helping and learning)
Things are going well at school and Bekah couldn’t be happier. Her classroom is filled with children who love her and treat her kindly. There are some very active children in the classroom and Bekah loves to watch the action. I asked the teacher about getting more help in the classroom especially because I know Bekah is content to sit in her chair watching what’s going on. When she is engaged and working, she makes so much more progress. The county has promised to try to find someone else to put into the classroom, so we will see when that happens. Bekah’s teachers are very sweet and work really hard to make sure she is included in all activities. They had a little halloween party and Bekah came home with all kinds of treats that she could eat. They had bought special treats just for her – – some peas, the little melt-away snacks, all kinds of stuff – – so nice! The biggest difference from last year is that the teacher/parent communication level is so much higher. Bekah’s teachers send me pictures, email, and text. It’s so great! Her progress reports aren’t great, but I think that is due to not having enough hands in the classroom for all the needs they are supporting. Her teachers names are Mrs. Hurst and Mrs. Hutson. Please pray for these precious ladies.
Therapy is going better at school. Bekah sees different therapists each day and has scheduled times for them to work with her. At first, Bekah screamed bloody murder every time the physical therapist walked into the room. After many weeks of working with her, Bekah has decided that Mrs. Julia is ok. I’m thankful we got that all worked out. Bekah also sees the vision specialist (Mr. Nick), the speech & language pathologist (Mrs. West) (once in a group setting and once one-on-one), and the occupational therapist (Mrs. Misti). The teacher for the deaf and hard of hearing will also be coming into the classroom to give the teachers some strategies since so many of their children are non-verbal. It’s no wonder she’s so worn out and her hair is all a wreck at the end of the day!
Bekah has determined that she is a big girl now and big girls don’t take naps. She is really adjusting to the longer day and makes it to about 8 o’clock now for bed time. We’ve taken bananas out of her diet now and she is sleeping so much better. She still wakes a few times in the night, but no where near the hour long periods we used to have. Many people I’ve talked to have said that bananas upset their stomachs too. I am so glad we figured that one out.
We have been going to a therapy company that is sort of like a library for adapted toys. Bekah (and Kayla) can try out toys, computer programs, switches, etc. that work to make it easier for Bekah to activate and to be engaged. Mrs. Lisa is amazing and always has new and excited things for us at our monthly visits. At the end of each session, Mrs. Lisa lets us have a bubble party. We sing and dance in the bubbles and we all leave happy and sticky! =)
(Bubble Party at Lekotek)
Bekah has really changed over the last few months. She really is growing physically and you can just tell that she isn’t a baby anymore. I was just telling Chris that I don’t get the “How old is your baby?” question anymore. =) We had her hair cut with some cute little bangs and I think she just looks older and so adorable now. Chris and I have also done a lot of growing too. A lot of these things (like the feeding tube) have been a battle of pride and surrender for us. God has been so patient and generous with us.
Kayla has been doing a fantastic job in second grade. We’re enjoying our second year in our co-op and Kayla is making huge strides. We do school at home (or wherever we see fit for the day) on Tuesday, Thursday, and Friday. I love being involved in her learning process and feel honored to be able to help her day to day. Kayla has a new love – – BOOKS! If her voice ever falls silent, she is probably in her bed reading. She has such an appetite for books that we’re making regular trips to the library to bring home a large tub full. She has finished several large projects for school this year, which are right up her alley because she loves drawing and crafting. Her teachers are loving and she has made lots of friends, many that go to West Ridge Church with us. This summer at VBS, Kayla decided to begin her journey with Christ. She wants to be baptized so that she can make a public profession of faith to her friends and family. She has been so inquisitive and eager to learn about a personal relationship with Him. It really is contagious to watch!
We are still a very active part of the special needs group at our church. They’ve really been a life-line for us. I can’t imaging this journey without them. We meet twice a month with some amazing child care so that the adults can support each other and talk though what we are each facing on our journey. We’ve seen this group grow this fall too. Amazing the work that God is doing in our community. Once a quarter we have a “breakaway” time of respite where we can drop off both girls at the church for a fun time (bouncies, petting zoos, firetrucks, etc – they go ALL OUT) and we can get away for four hours with no worries. Last time they had 100 children (special needs and their siblings) and 125 volunteer workers. It’s an amazing ministry.
Thank you so much for loving our family and continuing to lift us up in prayer. We know that only by God’s strength is the journey of life possible. We are seeking to honor Him in our family and in our day-to-day activities.
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Oh Val, no wonder why I hardly ever get to talk to you!!! I thought that I would re-read and try to count all the specialists who are working with Bekah…..maybe I’ll do that later (after I recoup just from reading your schedule). I’m really thankful that I can be a small part of Bekah’s family!!! I wish I could do more!!! It’s reassuring to know you’re surrounded by so many sweet people there in your life, every aspect!!! I’m really looking forward to spending time at Thanksgiving, and am wondering if the speaking device will be on Bekah’s chair by then….. Just seeing her manipulate the device you brought last visit was LOTS of fun and encouragement for even me!!! We’d better hurry and chase down a turkey since it won’t be long before you are arriving!!! Woooo Hooooo….gobble, gobble, gobble, here turkey, here turkey….
Thank you precious Val for sharing your lives — I
love you so very much! Xoxoxoxo