Thursday, March 12

Couple of more things accomplished


OH. Today was little hard for me. We had to be in CHLA 8.30 am. We started driving 6.15 AM and made it on time. Regina's audiology appointment went as expected. She has significant non reversible hair loss in both ears. Also this time loss was affecting her mid frequency range. NOT good. Because of this kind of loss, reginas speech will be also affected and we have to start speech therapy. I was told to do it through our local regional center ( but call me dumb, I have no idea what it is or where it is...). So I guess I have to do some online searching. Since Regina is still going to have chemo, we can't get her hearing aids. It has to wait. :(:(:(

After LA appointment we drove to CHOC ( in santa ana). Regina had her stitches removed today. She did cry since it did hurt :( BUT worse than that was Gabriel. he has some serious behavioral problems, and I am starting to be embarrassed by his attention seeking behaviour. AFter procedure Gabriel started screaming like baby, and ran back to check up room, and kept screaming scaring everybody in office. AND IT WAS FULL OFFICE. He screamed- I NEED A TOY NOW, I AM NOT LEAVING WITHOUT A TOY. and so on. HE REFUSED TO LEAVE. I wanted to smack him right there. and tell him snap out of it . BUT I did not. I just grabbed him by his arm and started pulling him out. HE Screaming like i was killing him or something. Eventually he calmed down , but it was no place for him to scream and seek attention like this. Also he misbehaved in audiology place. I told him to sit still and wait till Regina is done. He kept making stupid faces and fidgeting around, and making sounds. GRRR. I am not approving this kind of behavior from him. He is smart kid, but it does not give him right to act ICANDOWHATEVERIWANT...

And to top that. While we were leaving neurosurgery office, I was holding onto my both kids. We aproached the door, and when we wanted to get out, some other older ( grown up) cancer patient arrived in wheelchair with her sender. WELL, I was in no position to help her, not open her door, since they were blocking the door, and door was opening to outside... well she looked at me and started "screamin" that people these days have no manners, she should help us , she should do this that blah blah blah. I COULDN't even get out since she was blocking the doorway with her wheelchair.......

well, we finally got out and I heard her going on and on inside. I just kept quiet and kept going on my way. I am sure if I said I AM sorry.. She would have said- YOU SHOULD BE YOU WHITE TRASH.... Anyway. I just felt sad for her. I know she was on chemo ( I could see it), and most likely having really hard day. I wish her well.
When I got home , there was message in my answering machine from Erin. ( from Dr Loudons office). She apologised on that Lady's behalf. That just made my day. I did not expect apology, but when she did I just started crying. I just guess my " drama bucket" was little overflowing.

Actually... After Dr. Loudons office we did not go straight home. We went to Ikea to buy some of our favorite snacks and foods from their marketplace :)

3 comments:

Patty said...

Sounds as though everyone had a rough day. I'm so sorry it didn't turn out to be a better day for all concerned. I'm sure Gabriel feels left out at times, and also scared and afraid because his sister has been so sick. If he doesn't normally act like that you know something is troubling him. You may need to take a special day and spend with just him (if possible)and take him to his favorite place for lunch. Sibling rivalry can be something else. Believe me I know, we had four very close in ages, but by the time the fifth arrived (surprise) the others were 17,16,15 and 11. She said she felt like she had four Mothers. Me and her three sisters. LOL Her brother who was 16, didn't have a lot to do with her, except to play with her when he brought his girl friend to visit. LOL

Hang in there Mommy, it will get better, I'm glad they finally removed the stitches. I was starting to worry about them being in so long. Hope you all have a great week-end, try to get some rest.

Kathy said...

Start here for Regional Center:
http://www.rcocdd.com/descserv/descserv.htm

Steven qualified for Regional Center services as a newborn due to his cleft palate. An occupational therapist used to visit our house and we got respite services.

At age 3 they transitioned him to an IEP and that's taken care of in the school.

I'm wondering why they said Regional Center, speech therapy is usually handled by the schools. If Regina has an IEP, all you need to do is to add speech to it. Even if she's not in school you can take her for speech or someone can come to your house.

But most of all, the social worker at the hospital should have hooked you up, that's their job.

I'd ask Child Life at the hospital about what might be done for Gabriel. I'm sorry about what happened, it's a lose-lose situation for you.

Slim Fast shake + xanax and maybe some cheese :-)

Pru said...

Wednesday's is my day I pick Jonathan up from school (we carpool the other days) When Nick is out of town and it could help you I'd be happy to bring Gabriel to your house. We can always stop for some playtime at the park next to school first. I think Gabriel feels left out and it's easy to get caught up with all the other stuff during this time. You're a strong an a amazing mom, we know you'll make it right. Also, I would check with the speech teacher at school. She could probably point you in the right direction. All our best, Jonathan & Pru