Thursday, June 25, 2009

Goldie's Drinking Journal

Thought I would post what I have so far of the journal I'm keeping in regards to Goldie's drinking and swallowing. I definitely see a pattern emerging.

Goldie took a couple sips with her chin tucked and did well. At dinner she was holding her cup and drinking with her head up. A lot of liquid came back out of her mouth and she started coughing.

Goldie was not very interested in drinking today. Before bed her sister made a glass of chocolate soymilk and let Goldie try some. When we made Goldie her own cup she drank most of it with a straw. She did well drinking with her chin tucked. She sat on the living room floor and was able to hold her cup in front of her chest by herself.

Not interested in drinking this morning. I think my milk supply is increasing because she was nursing a lot and had two very wet diapers.
Goldie woke up thirsty from her afternoon nap. She took a long drink of juice (chin tucked) and did well. She continued to drink well throughout the afternoon and dinner.
She was eating dinner in her highchair. I have to hold her cup off to the side so it is low enough for her to drink safely. When she held the cup herself, above the tray, she began coughing and pushed her drink at me.

Prior to the swallow study we didn't know that her chin needed to be down throughout the entire suck and swallow. I would offer her drink lower so she would have to bend down, but I wasn't making sure she held that position until she finished swallowing. I'm thinking that drinking from an open cup will be tricky until she outgrows this. Less mess for me, right?!

Tuesday, June 23, 2009

Swallow Study

Hank and I took Goldie for her swallow study today. She did incredibly well! Which is good and bad. Its good that she is capable of swallowing safely, because she did it for them. But, I swear she aspirates 90% of the time she has a drink. So they managed to catch her the other 10% of the time. They think it may have something to do with her head posture, so now I have to keep a journal for a week so we can figure out what will work. Her head needs to be tilted down through the entire suck and swallow when drinking from a straw. I wish they had thought to have her drink with her head up while they were doing the test. Oh well.

After we got to the van, Hank tells me that they asked him if she had trouble sleeping. He said, "Yes, she has a sleep study next week" They said to let them know how it goes. I'm wondering if they saw some reflux and that led them to ask about her sleep? I'll ask when she calls next week.

Another good thing, there was no negativity toward Goldie still breastfeeding. She asked if I planned to wean her or continue after the baby comes. I told her I would like for Goldie to keep nursing after the baby arrives. She wrote it down in her paperwork and moved on to the next topic. It was nice not to have my decision questioned or looked down on.

As for myself, I started taking Unisom on Sunday and I feel like a different person. Not back to my old self but almost!

Saturday, June 20, 2009

Not the end of the world

I try to steer away from writing about certain family members and their backwards way of thinking, but I'm guessing I'm not the only one who runs into these kind of people. I just don't get why some people think its better to be dead than have a disability.

We went to a graduation party today for a young man I used to babysit about 10 years ago. Hank and his family were neighbors. I would watch their three kids while the parents went bowling until I had my first baby. Then, the mom watched my dd part time when I went back to work for a few months. Its hard to believe two of those three have finished high school.

Anyway, the topic of John & Kate +8 came up which led to the topic of a certain mom who had 8 babies when she already had 6 children at home. Then of course someone has to mention that they think "two of her kids have autism and one is half blind."

To which I say "Goldie is half blind, I'm sure he'll be fine."

At this point Hank has some wierd expression on his face I don't remember seeing before. The family member goes on to tell me "well you can't tell" No, I guess if you've been living with your head in the sand you wouldn't notice. Hello! She was at the zoo where my kid couldn't see the animals last month. She is the same person who sat across from Goldie last year calling her name repeatedly while Goldie looked around trying to find who was talking to her. How clueless am I supposed to believe she is?

So she changes the subject to a cousin that uses his peripheral vision and how strange she thinks that is. Hank finally told her to be quiet because she was being rude. BTW, he left early and finished the party at home.

This whole thing just pisses me off. Goldie is 2 and I feel like she has learned NOTHING by having her in our lives. Everytime she talks about someone with a disablity it is with such pity in her voice. She shakes her head, sighs, and looks at the floor. Of course, for her to learn something from Goldie she would have to admit that she has a disability. I just want her to see that you can have both a disablity and a happy, fulfilled life.

Friday, June 19, 2009

Getting better

The morning sickness is somewhat better. It improves throughout the day. I had my first appointment with the midwife and she suggested trying Unisom and a time released B vitamin. I haven't tried it yet, I'm afraid it will make me mroe tired and I don't need that.

Goldie had a sore throat and fever last week. How do I know her throat was sore? Her sisters both had it first and were over it in 48 hours. So, when Goldie woke up with a fever I knew she had the same virus. Too bad it took her almost 5 days to get better.

Then I came down with a head cold and I think Goldie is next. She sounds a little stuffy. Sorry this isn't a more uplifting post!

Did you know morning sickness is contagious? Yep, my kids seem to spend as much time laying on the couch as I do now. Maybe more. Goldie now walks over to the toilet and spits in it. Then she looks up at me and laughs. She's definitely the bright spot in my days.

Saturday, June 6, 2009

Vision Evaluation

This week the director of the Toddler Program at the Western PA School for Blind Children came to do a vision eval on Goldie. She was here for almost 2 hours! Goldie and I were so wiped out afterward that we had to cancel speech that afternoon.

The eval confirmed some of what I knew, but taught me a lot that I didn't know. I knew her peripheral vision was low. She was able to tell me specifically that it takes Goldie a long time to see movement with her peripheral vision, but she picks up light faster. So, a dr using a light to test her wouldn't get truly accurate results.

I asked about how we can help Goldie become more interested in her toys. Her answer was basically that we are going to have to think out of the box and adapt her toys ourselves. Using a black marker to outline pictures in books or painting the pop-up figures on her toys so that they are more visually appealing to her were some suggestions. I have to admit after I heard her ideas I thought to myself "Oh, yeah. That is so obvious. Duh."

She left me a folder packed with information on Goldie's diagnosis and how we can adapt her environment to help her. I tried to link to the program in another post, but the next day they changed their website and now the page is gone. The new site doesn't even mention the Toddler Program, but I can tell you it is a free service for children living in Western PA with visual impairments. When school resumes in the fall they will send a team of therapists to do a more comprehensive evaluation.