Tuesday, July 26, 2011

PT part Uno

Physical therapy (for Emma) doesn't seem so bad. The therapist's room is full of toys to dig through, climb on, and explore. The view from her third-story window of the parking lot is perfect for my little munchkin who enjoys watching people and cars. Plus, the therapist is super nice.

However, there isn't a lot of actual therapy for us to do. You can't make a stubborn 17 month old flex and stretch. As the therapist put it, Emma has her own agenda. Thankfully, the kid does a bunch of good "exercises" on her own, just by playing and running around. All of our go-home instructions start with the word "encourage." Encourage tummy time (to help her knee). Encourage her to go up on her toes and reach for things (to help her ankle). Encourage her to crawl (to help her wrist). It's all good and well in theory, but Emma doesn't participate in ANY activity for more than a minute or two, so these range of motion exercises won't happen much. I just hope they happen enough to make a difference.

On a positive note, the therapist was quite impressed with the Bean's verbal skills and vocabulary. That made me feel happy and proud. Especially since she only got a small sampling of Emma's conversational skills.

Thursday, July 21, 2011

Making Connections

Earlier this week Emma and I made a trip to the pet store for some kitty necessities. When we visit any location with animals, I like to take the time to show Emma all of the different critters. She loves animals, and I will do everything I can to encourage that love.

After looking at the birds, we made our way over to the fish tanks. We came to one with cute, little orange tetra swimming about. Emma saw these little fish and pointed.

Then she started saying, "Nack! Nack!"

"Nack" is Emma's word for "snack" which more specifically means "cracker." What do you suppose is Emma's favorite cracker (and therefore her favorite snack) in the world?!?

She loves the fishes 'cause they're so delicious!

When I realized the connection my little girl had made, I could help but laugh!

*These are not my photos. I found them on google. Thank you, internet. 

Monday, July 18, 2011

I feel like Potter tonight, like Potter tonight!

I gave Emma her first methotrexate injection yesterday. It went really well. If she could just hold still for 30 seconds it would have gone a little bit better, but that's okay. She really hates being restrained, so Daddy's going to have to figure out how to hold her hands without her realizing that he's up to something. It will get better and easier with time. Thankfully, she tolerated the medicine well and seems a-okay so far.

In other news, Barry and I are going to see Harry Potter and the Deathly Hallows Part Two tonight! Yay! I'm so excited! I'm looking forward to it for my own enjoyment, but I'm also excited to talk with Barry about it afterward. He's never read the books, and though I've told him some things about how it all ends, I haven't told him everything. Since I can't read the series over again for the first time, I can at least enjoy Barry's first experience of it all.

The week is off to a good start. I'm hoping it stays that way!

Thursday, July 14, 2011

The Next Step

Today we spent an hour and a half at the doctor's office. First we waited. Then I talked with the nurse while Emma ran through the room and tried to get into everything. We went over all of the side effects of methotrexate. We also went over everything I need to know to start giving Emma the weekly injections. I picked up the medication, bought my sharps disposal container (I feel so official.) and went back to see the nurse once more. This time Emma played with rubber gloves and a (clean, unused) specimen cup while I talked with the nurse. We double checked that the medication dosage matched the prescription. We played with a syringe to check out the size of the needle and make sure I knew exactly how much medicine I would be drawing up and giving.

I got more direction than necessary, but that's okay. In fact, I think I got more instruction on how to draw up a liquid with a needle and syringe from this nurse than I've received from any of the vets I've worked for over the years.

The nurse is great. Emma's doctor is fantastic. I feel like we're getting really special treatment and it is refreshing to see that, in this busy, fast-paced world, these people are taking the time to care. I'm really happy with Em's medical care so far.

Back at home, while Emma napped, I spent a ton of time on the internet and felt productive. First, I ordered three books about treating arthritis through natural methods, particularly diet. I'm interested to see what they say and try out some new recipes that will supposedly help decrease inflammation. Anything is worth a shot. I figure the more we do to help control this madness, the better odds we have of succeeding.

Then, I starting reading blogs written by other moms of kids with JRA. Check out the list I added to the bottom right of my blog if you'd like to read some. It feels good to know we're not alone, to see that other families struggle with this, and to learn that so many people are stepping out and speaking up in their communities to educate others about this disease. Awareness is important. I mean, really, I never heard of a child getting arthritis until it happened to my own kid. I look forward to following these other families' journeys and learning from their experiences.

Last, I called our local chapter of the Arthritis Foundation in an effort to connect with people in my own community and learn how to get involved. Unfortunately, the lady in charge of the JRA department wasn't in, but I left her a message, so we'll be in touch soon.

I feel good. I feel like I'm finally doing something, like I'm taking steps to improve to my little girl's progress.

We'll see how her first injection goes this weekend...

Tuesday, July 12, 2011

17 months


The kid is a talker. Much of the time we can't understand what she's saying, but more and more her words and sentences are starting to make sense. The other day she turned to the dog, who was outside waiting to be let in, and said, "No. Go potty!" I love when she uses a bossy voice and chastises the pets. She just said "Bless you" after Baby Torah sneezed. One of the highlights this past week was when Emma started to say "Gramma." My mom's heart melted. This kid is amazing and adorable.

In the past month she has sprouted her bottom two canines. I believe that just leaves the top two canines and four more molars until she has all of her baby teeth. What a big kid.

When I look at older pictures, I am amazed to find that she is, in fact, getting cuter and cuter with time. She is more physically capable every day. She really enjoys playing in water and swimming. She loves playing with babies and animals. She loves singing and dancing. You should hear her belt out the hymns in church. My apologies to the people sitting around us on Sundays, there's no way to keep a straight face when Emma's singing along.

Her first appointment with the pediatric rheumatologist went pretty well. We should be able to start some more medication soon to get this inflammation under control. That will be very good. Keep your fingers crossed that it works.

We love our Emma Bean.