sick?

It's so hard with children to know when they are not feeling well, but this is especially true of a special needs child. Charles and I have little clues that tell us and a good one is that Briar is not regurgitating as much. This is always bitter sweet for us. To see our baby not constantly in pain from throwing up is wonderful, but it usually means that she is getting some type of illness.

We went to the pediatrician on Friday and she politely gave me trouble for not administering Briar's phenobarb on a regular basis in the evening. Typically we give it to her in the morning and after a long day at daycare and then coming home to eat, Briar is asleep before bed time routines. I shouldn't make excuses, but she doesn't live our life and she doesn't always get it. I do what is best for my children always, but I really hate meds... and Briar REALLY hates meds (too thin!)

Anyways, Briar had a great week at day care. Her front 7th tooth finally came in!!!! But she has a big one coming through and she seems to get very agitated in the evening. We just rub it for her or offer her something cold (which she hates)

I have really been working hard on a few signs with her this week. She has her own "eat" sign because she puts her fist to her mouth, but we are also working on "sleep" and "milk". I think I will start "mom" this week and Charles try teaching her "dad"

I am so tried, I have been working a lot lately to get some money for Charles so he can have a great time on his trip in December!! Have a good night everyone XOXOX Ashley

PS Oh yeah, Ella's first day of school is Monday!! She is in full days all week. Her classroom is downstairs from me, but still close enough for me to walk by every so often HAHAHA Oh we are all so excited, Briar even picked out a nice dress for her to wear on her first day.

Reflux

Dear GERD,
I hate you! Please go away and never return!!

Cookies

Just using the title to entice you to read my blog :) Anyways, I am just waiting for the butter to melt a little in order to make Briar's favourite cookies!! Okay I LOVE them too (Thanks Michael Smith). So far today we walked to the library, met Charles at the laundromat and had a nice lunch. We also attempted to nap (I attempted to teach Briar the sign for sleep), but it was unsuccessful. She is probably cozily sleeping next to Charles right now!

We have had a great week. Loraine is Briar's new enhanced staff at daycare because Laura had to return to the before and after club. Loraine is great, she is very easy going and loves to play. Typically a few times a week, Briar is covered in dirt or paint or something hehehe. Briar had Osk and Amanda Dunn (her new resource teacher) visit her at daycare on Thursday. Osk called to say goodbye and had some great things to say about Briar's progress!! I will truly miss her. She was the first person directly involved in Briar's therapy. She always had positive things to say and she always gave me encouragement when I was feeling down. I'm trying not to cry right now, but it's hard!

Briar is really wanting to sit up now, like all the time! It makes it very difficult to feed her. We used to recline her but she fights it and because she can't quite keep her head up, the food goes everywhere but her mouth :) Any suggestions.... scratch that, no complaining here!!!

Now that I think of it, I have been meaning to ask, I hope this doesn't sound too negative... Does/Did anyone have a child they thought wasn't going to progress any further? I take Briar as she is and I really don't care if she develops any further, but it always seems like every 1P36 child can do more than her. She is still working on head control at 19 months. She can't really use her hands other than to scratch her face off. I definitely know when she is unhappy, but other than that she hasn't changed since she was born. I know it's a slow process, but did anyone feel this way and get totally surprised? I'm just trying to get a handle on what to expect... and that in itself is the problem, every child is different.

I think Briar will be starting PT again, Sue is done holidays and left a message to start as soon as we can. I am just trying to figure out school stuff and then I promise to return her call :)

I am interested in signing Briar up for a class or something. Any ideas? We did swimming and I can handle a lot but the teacher had the nerve to tell me she thought Briar was wanting to go home and giving her sad looks, or that if we couldn't do it, that was okay!! I told that B**** that it was good for Briar and that she loves water. Moving on, I also struggle in "average classes" because everyone either stares or asks me questions (I don't like telling complete strangers my life story so they feel better about themselves) We live in a small city and it's difficult to find other people with similar experiences. We have heard their is another family with a 1P36 child, but genetics can't give us any information! I am saving money to go to the conference next year. It looks so fun! But Charles can't go, because summer is the busiest time of the year for him, so I need a partner, any takers?

Ashley