I think this is my LAST post to catch up!! YEAH!!
I have a lot to update on medically, so I will separate each post by topic :)
- Feeding Therapy
- I'm excited to report that Ramya was approved for feeding therapy. Eating has been just so very hard with her and it's been a struggle to find help. We've had swallow studies, other feeding therapy evals, attachment therapy, allergy testing, a GI doctor, had her treated for parasites even though that came back negative, treated her H-Pylori, and the list goes on and on. I heard about a great program here in Tucson that focuses on feeding therapy through play. I was upfront with them and told them she's not the typical kiddo that they see, because there's not a physical or muscular problem we can find that's keeping her from wanting to eat, but explained she never got to be a kid and never got to have fun with her food. I told them the struggles at home, her history, and they agreed to an evaluation. I talked more with them during the eval and they agreed to see her as long as insurance would approve it, because it's classified as speech therapy, and she already receives speech therapy weekly. I was able to get that part worked out so she was able to start. I'm so so thankful to have help now! Ramya exerts control through her food. She spent a really long time not gaining any weight, because when she chooses how much food to eat, she only eats about 400 calories a day and has no desire at all to eat, even when it's her favorite foods. I was able to get her healthy by heavily supplementing with a high fat, calorie, and protein shake I make for her (this was to avoid a g-tube because she was loosing weight. I feel like she just needs more time to work through things and a g-tube won't help her emotionally), but she still has very little food intake. The goal of feeding therapy is to make food fun and help re-set the way she views food. We are hoping to get her to an appropriate amount of food in an appropriate amount of time so that she gains on her own unique growth curve. I also want to find another attachment therapist in Tucson so we can work on the emotional aspect of eating while we work in feeding therapy. I'm praying it helps!
- Vision Therapy
- Ramya is still in vision therapy and we just signed her up for another 12 weeks of individual lessons. She's working hard though and making improvements, which is wonderful. Conner, on the other hand, has exited and we are very excited! His reading and writing have made huge gains and he's very proud of himself. We are proud of him too, and our pocketbook is quite happy as well.
- Physical Therapy
- Ramya and Madi officially started PT at the Children's Rehabilitative Services in Tucson. We were really, really wanting in-home therapy but we were unable to find anyone after months of calling. At CRS our schedule is all over the place, they don't have openings for us every week, and Deena hasn't been accepted yet, but it is a start. I've been talking to CRS and, even though normally they wouldn't take Deena because she's not in CRS like the other two girls, they are going to make an exception for our family, so hopefully Deena will be able to get in soon. So far it's going well and we are excited to be back in physical therapy.
- Last week we followed up with neurology about Madi's medication changes. We are almost fully weaned on to the lamictal and so far she is tolerating it well. The plan is to go the longest we ever have without a seizure, and then we can consider weaning down on the keppra. Unfortunately, we need to do a blood draw and check the lamictal level, but not quite yet. The hard part is that Madi is a very hard draw and blood draws are also very traumatic for her, so we are already starting to pray it goes smoothly and they are able to get what they need on the first prick.
- Thursday the kids and I drove to Phoenix to see neurosurgery. Ramya and Madi both look great and don't need to go back for about a year and a half. Before we go back in we will get new MRI scans since it's been a few years since their last ones. If they can hold still, they won't need sedation, but if needed, we are able to sedate them. We will see how they are doing at that time and decide at that point. We stayed in Phoenix to visit family and friends for the weekend and enjoyed our time there.
I think that's all my updates for now. Whew, I'm finally caught up!! Thank you for always following our journey and praying for our family. We appreciate you!
Building our new Lego Birds set
Playing Barbies... aren't they just the cutest?!?!?!?