Life with Allison

Our family's journey with a special needs child

Another day

on February 28, 2014

I’M BAACCCKKKK!!!

I know it’s been awhile…uh, quite a while, sorry…..since my last post about Ally. Not sure how to classify everything in a nutshell. We’ve had good days and bad days. Her seizures were starting to get out of control, like 15-20 daily, so we began looking for alternative help. As I may have said before, we’ve ran the course of all prescription drugs we can do to the point the rescue meds just really don’t cut it in emergency situations. After asking around, some essential oils were recommended. A friend we met thru in our 4 Paws class scored us a free bottle of frankincense to try…..thanks again, you-know-who. 😉

It REALLY helped!! Couldn’t believe how well too. It has decreased the seizure activity down to 0-5 most nights. When we see her starting to have an increase, we give her another round of frankincense and it usually slows them down. We haven’t given the rescue meds since starting it! I wouldn’t say she’s under control by any means, but it’s better than where we were. A lot better!

Ally started some new stemming and well, I’m not sure what to call it all. She now rolls her eyes into the back of her head often, collapses when you brush her hair, and ‘pretends’ to have a seizure when you change her shirt. I say pretend because I’m not sure if it’s a real one or not. Actually, they all could appear to be seizures, but no one knows for sure. We did a prolonged EEG at a local hospital and I kick myself for it. It was just easier than driving the 2 hours to our hospital for a 2 hour EEG, wait for the doctor to read it and talk to us, and drive 2 hours home. I took a shortcut and got mediocre results. When my nurse called with the results from the other hospital, it said patient was uncooperative!! I mean, really. The rest was pretty inconclusive. We’ve had some days with a lot of misfires, too. Just this week, she had a day she couldn’t walk. She slid off the couch and fell flat on her face because she couldn’t lift her arms to catch herself. Then when she attempted to stand up, she couldn’t and had to crawl instead. She fell so many times, everyone started just holding her to keep her from hurting herself all day. It was really hard to watch and in some ways, I find it harder than the seizures. Thank goodness it was only 1 day.

We did get the autism diagnosis! Yay! Our school thinks she doesn’t have behavior issues though. Yuck. School has been giving us issues too. Actually, all year. First it started off when we brought Perry home and wanted to enroll the dog in school with Ally. The school agreed to have the teachers/aides command Perry, but no staff or student was allowed to take her out to the bathroom. I’ll give you a minute to let that soak in……….WHAT???!!! Its such a catch 22! If she is forced to hold it all day, which is WAY too long to ask any dog to do, she will inevitably go on the floor in the school at some point at which time it gives the school federal rights to kick the dog out permanently. They want me to go in and walk her whenever its needed. Also, unrealistic. It is ADA law that they ‘are not responsible for the care and supervision of the animal’, but my feeling is, no idea how much weight it would carry in court, if they are ‘supervising’ the dog by commanding her and walking her around the school, is there a way they may have to be responsible for the ‘care’ part since they agreed to the other? I mean, do they really get to pick and choose like that? Anyway, the school has also violated privacy issues, not followed our IEP because of word of mouth (that didn’t come from me or my husband), and when we had a sit down with the principal, 1 therapist and sub teacher (ours was out on maternity leave) they eased my worries but then someone in the class tells me it was all lies and that’s not what is going on. The school nurse actually giggled at the beginning of the year when I dropped of our rescue meds and she said ‘This is the fifth one of these I have. Now, aren’t I supposed to call the ambulance when I use it?’ Comforting. I feel so safe dropping my child off in your hands. I’m so frustrated beyond belief with this place! I’m really very under impressed with this school and its program.

On a more positive note, Perry really knows who her girl is! She is such a friendly, family dog, but when Ally needs her, she just knows it. Perry will follow Ally on her off days, lay with her and sometimes across her to prevent her from falling off the bed during the night. Ally tries hard to play with her by getting all her toys and giving them to her one at a time. Perry in return will lick her in the face and nibbles her feet (that’s a no no but we are still working on discouraging it). Perry ALWAYS wakes us when Ally is seizing or just awake. She will nuzzle, hard, under our faces and arms till we respond. She still doesn’t bark at the seizures, but its hard when Ally is having so many Perry can’t smell them anymore. There’s no break in the scent so she has to recognize the movement, which she is! We’ve worked on practicing the seizure alerting that when Ally starts moving, Perry starts getting excited and looks at me and I tell her to bark, and she does. Hopefully soon she won’t need to look to me to know yes, this is what we bark at. I’m so proud of her! Its really amazing at what dogs can do or be observant about that I never gave them enough credit before. One of the workers at 4 Paws told my husband she would miss Perry because it was impossible to have a bad day with Perry there, and she’s right! Perry knows a little nuzzle and petting and hugs (she loves to hug!!) can brighten anyone’s day!

Next week we go for the VNS consult. We did decide to go thru with it, just need to have a meeting with the surgeon and hopefully this spring it will be implanted. Maybe as early as April. Keeping my fingers crossed for positive results. If you would cross your fingers too, it would be much appreciated.

011028

Ally just loves her daddy!

Ally just loves her daddy!

Kisses for mom

Kisses for mom

At the prolonged EEG

At the prolonged EEG

Rough morning and needed hugs

Rough morning and needed hugs

Kisses for her girl!

Kisses for her girl!

Having a bad day....before meds

Having a bad day….before meds

Bad day....after meds

Bad day….after meds

Advertisements

One response to “Another day

  1. Hollie Wenzel says:

    Such a sweet girl you have…..Sending Love and Hugs to you all! ❤

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: