A Whole Bunch of Snippets

Given the fact the blog has been sorely neglected for nearly a month, a long list of snippets is in order.

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Let's start with some good news! (old news for those who follow us on facebook). Tennyson had her follow-up appointment with her orthopedist who performed her hip surgery last October. The appointment went great. Tennyson had an x-ray taken of her hips and he was able to compare it to the x-ray from last September. Her hips have improved dramatically and are nearly completely back in the sockets. He was so pleased with her progress, he said he didn't need to see her for a year!

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Tennyson had a weight check and didn't gain or lose any weight - which isn't bad and isn't good. We have another weight check in 3 weeks.

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Hippotherapy is starting up again now that it's spring time! Her school arranges for her to go once a month. She didn't get to go to all of her sessions last fall because of her surgery. I wonder if she'll like it now that she is more flexible?

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Tennyson caught a simple cold two weeks ago. She was out of school for a week, and has just now kicked the cough. It's so frustrating that a simple cold can take her down.

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Our entire family is planning a trip to Europe this summer! In preparation, we all had to get our passports. Getting Tennyson and Harlynn's pictures taken for their passports proved to be a little more difficult than I thought it would be.

Day 1: At first, they told us Tenn had to sit (ha!), unsupported (what are they nuts!?), look straight at the camera (maybe after 50 pictures!), and not smile (she nailed that one). Eventually, after explaining Tennyson's medical diagnosis, they said they would take it in her chair, with the white background behind it. It took a few tries, but eventually, they said they had one that would work.

Harlynn slept peacefully while we laid her on a white sheet and snapped her cute photo.

Day 2: We received a phone call saying neither of the girls' photos were acceptable so we had to come back and have them taken again. I was dreading going back since it took nearly an hour the first time (for two little pictures!). The second time went pretty quick. Tennyson was very cooperative. Harlynn was completely annoyed to be woken up, but we were able to get her head shot, which I'm sure she'll hate me for when she's old enough. Baby acne really comes on strong at three weeks old.

After filling out all the forms and finally getting the pictures, I took the applications in. The photos are required to be 2x2 inches. Tennyson's (of course) was 1 1/2 x 2 inches. Seriously. They told me I could send it in and hope they accepted it, or I could pay for another picture to be taken. I had them re-take it and I'm crossing my fingers that they accept it and issue her a passport.

If anyone has experience traveling internationally with a special needs child, I'd love to hear from you!

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We just received notice from the Duke cord blood bank (Carolina Cord Blood Bank) letting us know that Harlynn's cord blood was successfully banked. I am so excited we were able to have this done!

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At Tennyson's last neurology appointment, we were given the green light to wean Tennyson off of one of her three seizure medicines. I don't think this medicine ever did anything to control her seizures, but I'm still nervous to start weaning her off of it. I've waited until she wasn't sick to start the wean (which will take two months), but I'm really not looking forward to it. It will be awesome to have one less medicine to give her though.

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Harlynn is six weeks old! I just ordered her birth announcements. Mom of the Year right here.

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Tennyson has an eye doctor appointment on Wednesday. I don't anticipate anything to have changed with her vision, and she will hate have her eyes dilated. We will be ordering her new glasses and sunglasses. Hopefully they have something cute for her.

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Check out this adorable picture of Tenny. She's soo cute!

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We are still looking at new seating options for Tenn. She is currently in an adaptive stroller (Kimba by Ottobock). I have requested to see a few demos of equipment that might work well for her. I have to see them to really know if it will work for her. She'll have to use whatever we choose for at least a couple years. We are looking at the Mygo by Leckey, the X-panda with Combi frame, and the Spark pediatric wheelchair. We want Tennyson to be eye level with her peers, but want it to be easy for us to push her in as well.

 

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Tennyson is on spring break this week = I am definitely going to be tired this week.

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March is cerebral palsy awareness month. I just realized this and there is less than a week left of March. I can't keep up with all the awareness ribbons/colors, and awareness months for Tennyson's diagnosis'...but CP's awareness color is green, in case you were wondering.

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I was put in contact with a rep from an assistive technology company. We are starting the long process of trying to find Tennyson a way to communicate with a device. I am hoping Tennyson's speech therapist and our new contact will be able to work together to find something that works for her, that our insurance will cover.

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Certain Proof: A Question of Worth is a new documentary that you MUST SEE.  It follows three children with quadriplegia cerebral palsy (what Tennyson has) and their journey to prove they are smart and can learn in a regular classroom. People assume ignorance rather than intelligence if children can't talk or walk. Watching this made me realize I need to find Tennyson a way to communicate as soon as possible. She's smart, and she needs to be able to communicate. I have to help her find her voice. Check out the trailer for the documentary here.

Amy

tennsense@gmail.com