Friday, June 5, 2015

Ups and Downs

As the title suggests, we have had a lot of ups and downs lately. I have felt a little more down than up and didn't want to write a big downer post, but there have definitely been some bright spots in our days, so I'll share it all. 

Lu got a UTI. We have to cath her at the doctor's office to check for this. I have tried for several years to get successful samples here at home, but they are always contaminated and can take weeks to get. Just like all other motor activities, if I request that Lu try to pee, her body just seems to freeze up and she doesn't go until I take her off the potty and put her diaper back on. The doctor and nurse were terrified the first time they cathed her stating it might be very traumatic. I said, "Listen ladies, Lucy had four seizures yesterday. She has had a surgery to put a tube in her stomach. She's had three extended eegs, in addition to all she deals with daily...I think she'll be okay. She's tough. And it has to be done." And she is tough about it. She fusses a little, but it's not like a totoal freak out or anything. 

So, it was positive for a UTI, we did a round of antibiotics, and when she was retested after we knew the antibiotic would be done doing its work, she either still had it, or had it again. We started a stronger antibiotic and this past Monday we did a renal ultrasound to check her bladder and kidneys. Everything looked fine, except a tiny, insignificant amount of pee left in her bladder after voiding. So we don't know why it's not clearing up, but hopefully the antibiotic will work this time. 

We also saw Dr. Sasha a few Friday's ago. She said Lu is a star! (We know!) But, she also said that she is getting too heavy now and the heavier she is, the harder it will be for her body to manage itself. Dr. Loizides, the GI doctor we see in New York had already decreased her caloric intake by a whole can in the appointment we had before Dr. Sasha's so hopefully that will help. I knew they were going to say that. Dr. Sasha also urged us to maximize Lucy's use of her stander to help keep her heels stretched out, which I guiltily knew I had been slacking on. What is hard, and I imagine this is true for any parent, not just a special needs parent, is that there's always something you are missing. There is always something that isn't getting the amount of attention it needs. But then when you also add in all of the medical and physical needs that go with Rett Syndrome, it just can be so overwhelming sometimes. Lu totally rocks at communication! We practice walking every day. We work on reading, and art projects, and gardening, and whatever else we find time for, and then I realize I'm totally neglecting her need to use her stander. So...


Also, because she has grown so much Dr. Sasha increased some of her meds. We are also trying to adjust her Depakote to try and not have any of the big seizures that put her to sleep afterward and recently she has had an increase in these kinds. She had two just this past Tuesday and then another on Wednesday. In addition to those, Lucy's body has just been in constant vibration mode all week. Unless she's asleep, her body has been so, so shaky and so much more out of control than usual. She has been emotional, and loud, and agitated. Two nights ago she woke up at 3:00am and could not fall back asleep until 8:00am. It is breaking my heart. I don't know what's causing it all, maybe the antibiotic, maybe discomfort from the UTI, maybe the med increases? I just don't know. I'm just doing my best to comfort her and keep her body as calm as we can. 

On the bright side though, Lu and I took a special trip to Barnes and Noble last Friday. It was Lucy's first time at an actual bookstore (the majority of Lucy's books are used from Goodwill, Kid to Kid, yard sales, and online). We went to a bookstore after Lucy said with her Tobii, "Let's go, shopping, home, leave" and when I asked her what she wanted to shop for she said, "book, story". When I asked her what she wanted a story about she said, "Viking, Abby Cadabby, traffic, bike, bus, accident" it's always best to have a plan when we go somewhere for shopping because Lu seems to get overwhelmed with all the choices, so I looked on the Barnes and Noble website for books about her chosen topics that it looked like they would have in the store. I then made her a page on her Tobii to look at the books and choose which ones she thought she might like to buy. So this way we made a shopping list for our trip. The good parts of the trip was Lu had a toasted ham and Brie sandwich that she was in love with from the Starbucks that's in the store, and of course it was great that she got to visit a new place. Some not so great parts of the trip were that we didn't find any of the books on our list, and Lu stated most of the time we were shopping that she was "impatient, impatient, frustrated, angry, anxious, impatient, impatient" etc. She even said "embarrassed" once which was perhaps because she was having a very loud day. Anyway, we found some good books even thought they weren't on her list and had a fun day out of the house. 

Lucy also got to fly a kite for the first time ever:

We went to a local greenhouse and chose flowers for her garden:

Together we chose Lobelia, Snapdragons, Portulaca, Petunias, and Salvia.

And look at her beautiful tomatoes! I'm not sure if I mentioned before but these plants are grown from seeds that I saved from two different heirloom tomatoes two summers ago. The bigger ones on the right are called "Mortgage lifter" and the smaller ones are "Black Zebra". 

We got a new wicker love seat so we can sit out on the front porch with Lu:

We started working on polite ways for Lucy to let people they need to talk to her like she is a big girl and not a baby, because sometimes that happens:

And Lu tried out a little chair we added to her garden area:

So, things have been good and bad around here. Or hard and easy? Or happy and sad? All of the above I guess. But through it all, we persevere, for this kid, because she is so tough and brave, wise, amazing, and patient, even though she says all the time that feels "impatient". She really sets the standard around here for how to just hang in there.

Tuesday morning after a huge seizure:

Tuesday afternoon when I asked her to smile for Daddy so he knew she was feeling better:

I used this quote once before, also in reference to Lucy, but I think I'd like to use it again. It's from the book The Road by Cormac McCarthy:

“What's the bravest thing you ever did?
He spat in the road a bloody phlegm. Getting up this morning, he said.” 


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