Sunday, June 27, 2010

Trip to Paynsville

Akila and I went to Paynesville today to a benefit for a baby named Molly Reis. Molly has Turner Syndrome, like Akila has (on top of her FASD, but completely not related). Molly was born in November and her mom, Kayla, and I were connected by Children's Hospitals as Kayla had questions for a parent of a Turner's girl.

We met once, and have been emailing for months. They live in the St. Cloud area, here is a link to their Caringbridge site. They are struggling with tons of medical bills and a benefit was planned tonight with a silent auction. While there, I was reading a newspaper article about Molly and the benefit, and I realized that Molly also has HLHS, which is what sweet baby Hazel had. I did not know Hazel, and I don't know her mom, Angie, in real life. But I feel like I have a great feel for her heart through her blog and a 3 part article that was recently published. Check it out when you have a few minutes. I have never heard of HLHS before praying for Hazel, and now I know two babies diagnosed with it.

The silent auction had lots of great things on it, and I made several bids. Akila bid on a zebra striped purse, her bid was $3, one dollar above previous bid. I was trying to have her sit down with me to eat, but she was obsessed, I mean OBSESSED, with her bid and kept going back to the table to see if she had been outbid. Perseveration at it's finest.

Then, she saw the manicure at the auction table, and was convinced that we needed to bid on that. I explained that it would be way too far to drive for a manicure (not to mention that I would not be paying for her to have a manicure), but she of course disagreed. She was starting to escalate, and it did not look good. I decided it was time to exit, but swung by the purse to see that she had changed the bid to $9. Nuts. I had to then go and look at every item on the auction to make sure she had not bid anything when I was eating and lost her in my sight. She had bid on a few other things, so I took care of that, and high tailed it out of there. Only to listen to her perseverating on the manicure for the next 45 minutes.

We started a new thing last week where if she takes her meds when she is suppose to without fighting it too much, she gets a star. And if she gets stars for two weeks (I think we will need to change it to 1 week, 2 is too long for her), she gets to do something off a list she made with Michael and I. One of the things on it is to get a manicure. Yuck. But OK, if it works, I'm willing. She has been doing really well for the last 5 days.

On the way to the benefit, I met someone who lives in Sartell and was selling one of those Playskool doll houses with the people and furniture for $25. I met this nice woman at an SA in St. Cloud. I told her husband before I left that it was a birthday present for my daughter who would be with, so I would appreciate it if they could possibly fit it into a garbage bag or help me to covertly get it into the back of the van.

We arrived a few minutes early, and the SA happened to be next to a toy store. So of course, Ms. Akila thought we needed to go there to buy something. Not going to happen. I tried to explain calmly in several different ways why we were not going to do that. Then the lady arrived. I tried to give Akila a few dollars and send her into SA to choose a snack, which would normally delight her to no end (and don't worry, I planned on being in there before she finished with her purchase, to check her pockets and see what she was buying. Normally, it takes her 10 minutes to choose something). Well, she would not go. She was kicking the van and obsessing on going to the toy store.

Then, the nice lady, had a great suggestion. How about Akila and I go into the store and she puts it in the back of the van and covers it up. Brilliant!!!!! I paid her, said my thanks, and in we went. I am not sure if I am going to be able to wait until August 5th to give it to her though. She loves these things, and plays with them obsessively at her friend's houses, and at the health club or church daycares. I might have to pull it out of the basement on a particularly tough day. We'll see.

Akila has had a runny nose all week, I thought it was allergies. It isn't. Last night, her throat was sore in the evening. She was up four times last night, and the last time she woke me, at 4:30, she said her ear was hurting really bad. I think she has an ear infection. She was fairly normal acting today, but tonight, was kind of out of it. She thinks she needs to go to the hospital. It may be a long night!!!


GB's Mom said...

Sorry Akila isn't feeling well. Happy that she had a good week. I didn't realize Akila had Turner Syndrome on top of FASD. What a double whammy for the kid. The doll house sounds like a great find.

Anonymous said...

Forgive me for asking but is a manicure with polish in a color that's appropriate for little girls all that bad?
I realize A. probably wants long, bright red nails but short polished nails don't seem to be all that terrible, especially if the manicure is linked to good grooming and learning to take care of her own hygiene.
Of course if there are religious objections I understand why you don't want her doing it.

Cindy F. said...

Are you going to be at the concert in Plymouth on Wednesday night? Shoot me an email at my school address if you want/need any help. I live just a few blocks away.

the johnson crew said...

Barb, both days would work. Jason is gone over night with our youth group so he will be gone, but it would be so crazy and fun. You all could camp out in our apartment, and we could have one of the most memorable/crazy nights of our lives... we have an amusement park in our small town called "little America" It is open from 12-6 (I think) and I heard you can get a bracelet to ride all day. That might be fun to do with you guys. I hope you guys can come.

Love you sweet friend!