Feeding Therapy, Vision Therapy,Physical Therapy, Neurology, and Neurosurgery, OH MY

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.   

• Neurology
• 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. 

• Neurosurgery
• 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?!?!?!?

Our First Attachment Therapy Session, Cranial Sacral Therapy, and Ramya's Feeding Evalutation

This week we had our first attachment therapy evaluation, as well as Ramya's feeding evaluation. 

Our first attachment therapy session went well.  Ramya did her usual charming acts because there was someone new in the house.  She usually tries to charm strangers.  She had her over-the-top fake giggles, was overly-loud to get attention, and tried to wedge herself, physically, between the therapist and Madi to take attention off of Madi when the therapist was talking to her.  The therapist handled it all wonderfully, though, and I am sure she sees it often. 

She got to observe lunch time, which was nice.  Though Ramya mostly ate unprompted, which is unusual for a meal time, it did take her an hour to eat one chicken drumstick (which she really likes to eat), and she didn't want to eat anything else on her plate.  She was very squirmy and would try to ask lots of questions to divert attention to get out of eating, which is her typical eating behavior.  We talked a lot about how I handle situations and the kinds of verbiage I use.  She said that the words I use are good and to keep it up.  An example of this would be talking about food with Ramya.  I will say things like, "I know sometimes it feels hard to eat, but eating is very important.  Your body needs healthy food to grow and learn.  I love you very much and it's my job to make sure you are eating enough food to grow."  We do a lot of talking through things and she gets reminded often that my job, as her mom, is to keep her safe.  I tell her I love her very much and that I take my job very seriously.

She brought puppets and Ramya responded very well to them.  The puppets talked and asked questions, and Ramya interacted with them.  Based on her observations with the puppets, she said Ramya does not yet have object permanence, which is something I thought to be the case.  If I leave the room, she immediately comes looking for me or starts calling me, as she likes to have visual and auditory contact at all times.  She gets pretty upset at me if I ask to have privacy to use the bathroom.  She will maintain verbal contact me during times like that, but isn't happy until she has visual contact again.  Because I this, I assumed she hasn't yet developed object permanence.  This is another thing we talk through a lot.  I tell her mommy is always here for her, even when she can't see me.  If David and I are going on a date, we tell her that we will only be gone a short time and that we will always come back.  We play games like "peek-a-boo" and hide-and-seek to help her understand that not seeing us doesn't mean that we have disappeared. 

She recommended trying is not letting meal times go on indefinably, but instead, if she hasn't finished a meal in x amount of time (say 45 minutes or an hour), then she has to drink an extra protein shake to make up for the calorie difference.  We have a session planned again for next week and I am anxious to get some feedback about things we can be doing to increase our attachment and help with Ramya's emotions and meal times.  The plan is to continue in-home sessions for a while, and then switch to less-frequent sessions in the office.


This morning Ramya had her feeding therapy evaluation.  The therapist asked a lot of questions about Ramya's history and why we were in for an evaluation.  She then watched Ramya eat  some different foods.  I had brought in about 10 different kinds of foods, with varying textures; some that she loves, and some that aren't her favorites.  She basically said what we already suspected.  Ramya doesn't have any problems with chewing or swallowing.  Her mouth muscles work well, she's able to clear her mouth correctly, she can move food around correctly, and everything looks good.  She doesn't appear to have any sensory aversions to food either.  She thinks her eating issues stem from desire for control and lack of desire to eat.  She said her mouth may get tired after some time eating, but that's because she's choosing to take 1-2 hours eating per meal, instead of about the 20-30 minutes it should take.  She said she sees this behavior in kids sometimes, and it can be really hard, because there is just no desire to eat and no motivation, so nothing you offer will motivate them, which is what I am seeing at home.  She's going to send home some things we can do at home to further strengthen her mouth muscles and also recommended getting a chewy tube for her to chew on and build up the muscles, but that there is really nothing she can do therapy-wise to help her.  She did recommend getting a swallow study, just to make sure things are ok structurally, so I called the pediatrician and asked him to send in a referral to Phoenix Children's Hospital.  She also recommended heading back to GI if Ramya doesn't gain weight this time around, but shared my same concerns with our last GI doctor and recommended seeing something different.

This afternoon Madi had her second session of cranial sacral therapy.  It lasts for about 30 minutes and she loves it!!  Our OT, Danette, goes to this person for massages and the lady had told her she was looking to take on a few kiddos to help.  She's been able to help kids avoid rodding surgeries and other things like that in the past.  She was excited to get to work with Madi and help her with her tight heel chord, hip out of place, and scoliosis.  Madi does feel more level and looser once we leave.  I'm excited to see her body change while we work with her.  She usually works with a child weekly for a year.  I also talked with her about Ramya today and she is going to start working with her as well.  It hadn't dawned on me that she might be able to help, as Ramya is actually overly-loose and not tight, but she thinks she may be able to help Ramya too.  I'm excited to have her working with both girls!!


That's all the updates I have for now.  Tomorrow is a down-day for us, and I can't wait!  Have a blessed weekend!