Thursday, August 21, 2008


Just wanted to say HAPPY 5TH BIRTHDAY to Logen!!! I know he's on a fabulous vacay at the beach...probably sipping on some apple juice on the sand :)
Have a great day, little one!!

Quick Update on us

Hey all, sorry I've not updated in so long! Things have been incredibly hectic around here. We got Bri's first manual wheelchair finally, in July. It's a cute little Zippie Tilt & Space, a purple frame, with lavender and black upholstery, and her name embroidered in the back. Brianna LOVES sitting in it...she spends most of the day in it when she's at daycare.

Speaking of daycare...don't know if I had started working again last time I updated or not. But work is going well. I'm working providing residential care (cooking, cleaning, passing meds, helping with hygiene, etc) for developmentally disabled adults. It's a great job, with good benefits, and my clients are wonderful. Right now, I work Wed-Sun, from noon to 8:30pm, and from 1-9:30 on Saturdays. Wed, Thu, Fri, Brianna goes to daycare, and she loves it. The gal has worked with me on her rates, and is only charging me $300 a month for Brianna, since we receive an additional payment for her childcare through the Inclusive Childcare program. On the weekends, there's a 19 year old girl who comes into our home and watches Bri. Both caregivers are wonderful with Bri, and Doris, the DCP, has said I need to get a Mon-Fri job, so she can watch Bri five days a week :-D.

On Tuesday of this week, we enrolled Bri in preschool, finally. She starts at the school just down the street from me, on Sept. 8th, on Tuesday and Thursday mornings. In October, her IFSP is up for reevaluation, so if she is doing well going two days a week, we might increase to three days a week. I'm sure she'll do wonderfully. Me, on the other hand...well, that remains to be seen. I mean, it's not like she hasn't spent whole days away from me before. It's not like she hasn't been going to daycare consistently for the past several months. But this is SCHOOL! It's the next step in the life of a child! It means my baby is growing up! And I really don't know if I can handle that. Anyway, that's all for now!

Wednesday, August 20, 2008

Hey all!

We've had a really rough month here. Nicholas needs to be circumcised, not sure if I posted about it already, and is being booked asap now to get his eyes fixed because they have gotten really really bad over the last two weeks. He is going back to the eye clinic again in two weeks for an alignment check and because she wants to keep a closer eye on him until surgery but he does need glasses asap. In two weeks time his eyes have gone from 1.25 and 1.75 to 1.75 and 2.75 not sure exactly what that really means but she said it should be changing that fast and needs to be treated now. We also got the full results back from his CT w/ contrast and after reading it I just wanted to puke, I kept thinking to myself that it was not his report and they must have sent the wrong report over. I didn't think they would be as bad as what they are but it's like two paragraphs of "severe damage to ____, ____ area noted to be small, _____ area has small deformity, severe white matter destruction in ____ area, ____ area has minimal white matter, partial right plagiocephaly noted, patient has a pineal cyst measuring 1cm" sorry can't remember all the parts of the brain it was saying it was all too much to memorize! As for the pineal cyst they are usually common findings and almost always less then 0.5cm and asymptomatic but his is 1cm and symptomatic (they are figuring because of it's size it's the cause of his head aches) it could also be the cause of some of his other problems and we've also been told if it continues to grow it can start to cause obstructive hydrocephalus at 1.5cm. Needless to say it's been a lot to take in and we are still trying to absorb it all, we are in shock still, NOTHING can prepare you to hear/read all of this!

Otherwise we did have a great day on Sunday, we went on the Easter Seals cruise with Nicholas and Joey (Matthew stayed with the IL's) and we all had a blast. It was also Joey's 10th birthday, how time flies...I feel old now, so we did a bunch of other things too but the cruise was the highlight of everyones day. Nicholas really enjoyed it even though we didn't think he would because of his phobia of water but he fell in love with boating and the couple that took us out. Joey on the other hand had a few points where he lost it and freaked out, as soon as the wind hit the sails and tipped the boat sideways he freaked out but each freak out only lasted a few minutes and them he would calm down and get right back into it. He also got to steer the boat and was very excited to do this and got to help put the sails out and other things that needed to be done. It was a really good day and for once it didn't rain on us lol which was a shock since lately every time we go out with them it starts pooring!

Hope you all had a wonderful summer...sadly it's quickly coming to an end!


Tuesday, August 19, 2008

Emma and I are back.

Sorry that I haven't been around lately. We have taken several small trips lately, visited a few doctors for checkups (YUCK), visited family, and done some more therapy for Emma. I wish I could note dramatic improvements, but none to report.

I really hate that I have missed some birthdays and important events among you all, but having a CP kiddo keeps me running. I am sorry, but I have truly enjoyed seeing the pictures of all the little cuties. They all look so sweet and so "typical," and I mean that as the best of compliments. I know I love it when people say Emma looks typical in her photos. It's not too often, but great when it happens.

We have recently looked at some wheelchairs/seating combos for Emma. Yikes are they expensive, and I have a $1,000 co-pay on durable medical equipment, which bites!!!

Can't wait to get caught up. You guys are the best, and I have totally missed you all.

Monday, August 18, 2008

Wow, it's been awhile!

LOL, I can actually access the blog today from work and so I am trying to get caught up with what everyone's been up to. Forgive many of my late late (and likely impertinent) comments. Anyway, work's been kicking my butt to the tune of 60 hours a week. Nights, weekends and days. But we're nearing the end of the project so woo hoo!

As for us, Hunter gets his AFO's tomorrow and I'm so totally nervous. Excited that I really think this will help us turn another corner, but nervous none the less. We're doing PT once a week now and after our big appointments we added speech/oral therapy twice a month too and we'll go to OT at least once a month (they'll tell us at our OT appointment tomorrow how often they want him to go). He's stopped sitting but W-sits with the best of them. Still "crawls" in his own cute way. He can pull up but is totally on pointe. Hopefully the AFO's will nip that in the bud. We'll wait until the end of the year to make a call on the botox injections or casting. The neurologist we met with said he thinks Hunter's brain damage is in the basal ganglia and in it's connection to the thalamus. This explains his sleep issues, the motor function and unfortunately what seems to be creeping up as emotional/behavioral issues as well :( We will know more when we do another MRI but we'll wait for awhile so that the picture is better (between 18-24 months old). We have finally started getting some sleep though because we were given the go ahead to give him benadryl and melatonin at night. Doc said she'd give him valium or baclofen if we wanted but I wanted to start small and see if we couldn't make do with OTC. I'm chickening out on the lawsuit but I still think about it a lot. It's not out of the question but I don't know if I can handle it mentally. I need to get settled with it all before I make the final decision. Man, am I long winded today or what?!?

I don't see an update post but I'd love to hear what everyone's kiddos are doing!!! Post em here if you don't mind!! (or we can start a separate thread).

Anyway, I love seeing all these pictures up and I'd like to post some if I get some cute ones. Can anyone tutor me on how to do it? I want to get a picture collage too, I just haven't downloaded any pictures in forever!! I look forward to being able to come on the site more and keep up a little better. Our best to everyone :)

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