Monday, August 31, 2009

More pictures from Spring/Summer 2009

Granny Hensley, Cameron, Jason and Haley. Granny died in April and we'll always treasure the pictures from our trip to see her in February. Haley welcomed a new cousin to the family in February - Brody Barnett.
We found Haley like this one night - her blanket is falling apart and she was asleep with her face sticking out one of the holes.
These next pictures are from a trip to the local children's museum over spring break:
Easter Egg Hunt at church:

Updates on the kiddos

Some pictures from spring/summer:
Haley and mommy at Fort Fisher, NC. Spring break trip to the NC coast.
Haley and Daddy on the ferry.
Atlantic Ocean. Near Fort Fisher, NC.
On the ferry at Fort Fisher.
At Fort Fisher.
At the aquarium.
With daddy at the aquarium.
CAMERON
School started here three weeks ago and it's been a great start for Cameron (16, a junior). He seems to like most of his classes (he says he's bored so that means everything is fine) and FINALLY got into a special class he wanted to take - small animal technology. There is some girl at school that's chasing after him and with the unlimited texting on his phone, he's been especially busy lately. :)
Cameron made a big decision this week - he was ordained to the priesthood. In our church that can happen at 12. Cameron hadn't attended church regularly since he was pretty young. He's struggled with figuring out his beliefs. He has always been respectful of our beliefs and participated in our prayers, family nights and church attendance. He's been attending youth activities and seminary (a scripture-based course offered to high school students in our church). That said, he didn't seem to be particularly interested. Seemingly out of the blue he asked what he needed to do to receive the priesthood so that he could assist in the duties the other teenage boys have at church. He's been working with our bishop and Sunday was the big day. Jason ordained him and it was wonderful - many of his family members attended church with us to support him. What a great day!
Cameron is like a different kid than the one that moved in with us 18 months ago. He's made such huge strides. We're so proud of him - he's a great kid and has really grown up a lot lately.
HALEY
Haley is my sweetie pie. Every morning she climbs in bed with me for some snuggles. If we didn't have our snuggle time each day, I'm not sure how I'd get through the rest of the day. I love it!
Haley just started first grade. She's very close-lipped about school. As far as I can tell, she seems to be struggling more this year. I think her teacher is a lot more experienced and doesn't gloss over things as much. She definitely has a clearer picture of Haley's abilities. In one way, I prefer that. I want to deal with things head-on. But it hurts. A lot. I hate that she struggles.
We won't rewrite her IEP until late September so she's receiving the same services this year as she did last year (consultative services for OT, a tiny bit of PT, 15 minutes of SPED a day). I'm betting that she'll get more support this year. The positive is that it does sound like the special education teacher really is working with her this year (Haley talks about her). Haley also talks about the people that come into her class to watch her every day. We can't figure out who they are. One might be the remedial reading teacher (we did just sign papers to approve her having remedial reading). I'll be anxious to see what they report. We told Haley to ask them or her teacher who they are and why they are "watching" her. LOL She does like being a detective. ;)
Haley isn't doing well, health-wise, other than her eyes. Her eyes are doing better! We might even be abe to stop the eyedrops by Christmas. Other than her eyes, things were going okay until late spring/early summer. She had headaches almost daily this summer. Developed acid reflux this summer (her docs say it's common for kids with hydrocephalus). Lately she's also seemed more confused and slower at processing things. She's even been struggling with buttoning her clothes, putting clothing on backward - stuff she's been able to do for years. Plus she had two more seizure-like episodes in June and had to stop her horseback riding lessons. It's just been a tough summer in that way.
She's seen her neurologist, ophthalmologist and pediatrician in the past two weeks. She had an EEG and MRI last week. We see her neurosurgeon on Wednesday. Acid reflux drugs seem to be helping the reflux. We increased her headache meds but we're not sure that's helping. Her neurologist doesn't feel that the headaches she's having are related to her migraines. Hopefully the neurosurgeon will have some ideas. If not, we'll be back to the pediatrician. *sigh*
On a better note, we had a great summer together! We did so many fun things. We spent a lot of time at the lake and went on some fun trips. Plus we had Camp Kappes - with all 13 cousins for a week. The best part about the summer was that we had no schedule - Haley even got to stay up until 8 pm! *gasp* She really thought she was a big girl. :) Having a six year old has been fun!

Saturday, August 29, 2009

Hey, We've Got Pictures of That!

Real quick, and then I'll get on to the pictures...another Haley-ism! When we go to the lake, according to Haley, there is something we ALWAYS have to do to keep us safe...Mom makes us put on sunscream. Which is fitting, since if Haley is in a bad mood, she screams at us about having to put it on. On to the pictures... Haley watching fireflies. You can't really see them; they are the little white lights all around the grass. She was absolutely fascinated. Hey! Haley stole my phone and decided to do some self-portraits... Bet you can't guess whose hair this is. Here we are at the neurologist's office a little more than a week ago. Kelsee decided that we hadn't taken pictures of Haley recently, so here we go. Nothing like going for the random. Is that a real smile? Almost. Haley is notorious for refusing to give us real smiles during pictures. She gives us the Kourtney-patented, Kally-improved posing smile. This one was taken like 350 pictures into this photoshoot. I call it Dazed & Confused. Our next photoshoot was actually taken for Haley's benefit. She had an EEG and MRI done a couple of days ago. She was VERY curious about what the EEG tech was doing, so we took pictures. Here she is trying to put an electrode somewhere in Haley's curls. Haley was a great sport. Her face here shows an interesting mix of emotions. She was fascinated being "wrapped like a mummy", but was also a little anxious about the whole thing. Towards the end of the EEG, she started complaining about tummy aches and afterwards, as we were walking to the MRI, she just burst into tears. Adrenaline letdown? Of course I'm right there with her! Kelsee and I held her hands or her arms or legs the entire time. That was partly because she was a wiggle worm, but it was mostly because we just wanted to reassure her. BTW, she loved the fountain of curly hair pouring from the top of her new headwear. Gotta love the hair. This is right after the EEG was over. Haley is pouting because Mom's taking ANOTHER picture. We're good for at least one of these every shoot. Anyway, hope you enjoyed! More to come...

Tuesday, August 25, 2009

The Return of the Purdi...

Hey, I remember this place... I'm going to try to resurrect this blog. We'll see how well I can keep up with it. I figure the best place to start is by telling everyone all about me and what I've been up to. OK. Seriously, we can't go wrong with Haley-isms. ----- Did you know, according to Haley, when she has a sore on her tongue, she has a "tastebug". We've tried to tell her they are called "tastebuds" and everyone has lots of them, though they only hurt when one is swollen. She still doesn't seem to grasp it. The other day she told me her mouth her because she had four tastebugs! Poor kid. ----- Speaking of bugs, Haley had a small littly itchy bump on her hand. After scratching it raw, she grunted in frustration and said, "I hate having bee-hives on me." ----- There are actually more Haley-isms, but my mind has gone blank. No excuses. I guess I'm only good for thinking a limited number of hours a day. I'll be back with more at an as yet to be determined time in the future.