Friday, December 31, 2010

Almost Out of Here

The trailer is packed and the only thing left is the routine packing up after two weeks "vacation". So far this morning, Hope threw a hunk of wood at GB and missed, and the girls  sneaked into an empty room with a walk in closet and proceeded to nail polish themselves, the books they made and their sneakers. They are now confined to the great room with me and I am not getting anything done. I am waiting on clothes in the dryer. My sister's tonight for New Years Eve and home bound after lunch tomorrow. I depend on family and they depend on me, but it was a long two weeks and it will be REALLY good to get home again.

Wednesday, December 29, 2010

Long Day

GB's shrink has decided to add Zyprexa to her medication regime. I am not completely sold, but the only other choice he gave me was Seroquel, and I have had too many kids react very poorly to Seroquel to even consider trying GB on it. He called it into the drugstore at home, so we probably will not start it until Sunday night.

The girls had a difficult day today. Most of us were sorting and packing stuff. There were people in and out all day and anytime I was engaged in the sorted, they slipped away to unpack boxes so they could take "treasures" home. My sister and I understand each other very well and there is little friction over where different items are going, but the extended family members are very sure what they are entitled to, and that tends to be energy draining. The girls have been away from home for almost 2 weeks and they really need to get back to their home and routine. I wish I could click my heels three times and end up at home.

Tuesday, December 28, 2010

Not Quite Quiet

The plan was to make today a quiet day and let the girls settle down a bit. For reasons posted on my other blog, the afternoon was blown to h*ll. We will try again tomorrow. Hopefully tomorrow, I will also  finish my review of the year post.

Sunday, December 26, 2010

Christmas Pictures

Christmas PJs 2010
Hopes PJ bottoms didn't make it to picture time. A fitting end to our year. The Risperdal held GB for Christmas Eve and Christmas Day. It was very low key. Each person had two presents to open and each child also received a stocking. People went out visiting in the afternoon, but nobody was invited here. My girls stayed home. New Post on other blog.

Saturday, December 25, 2010

Christmas Eve

I am both happy and struggling with my son being here for Christmas. I felt so bad for GB's struggles yesterday that I chose to put her back on Risperdal last night. I will continue it through tomorrow night so at least she will be able to enjoy Christmas. The difference between yesterday without Risperdal and today with it was dramatic.

Today they finished their shopping, went to the park, decorated the tree, and went to the beach. K and Danae tried to save the Beta fish that had been feed Froot Loops. Garrett and Hope tried to feed the koi before the ice melted. After dinner we chose to skip Christmas Eve Service. Instead, my BIL read the Christmas verses from Matthew and Luke to the family. We talked about how historical data suggests Joseph was a stone mason, not a carpenter. It held most of the younger ones attention. The little ones are now asleep, while the teens have a ping pong tournament going on. Since everybody is done wrapping, snacks and Fried Green Tomatoes are on the agenda.
GB cleans up her beach treasures.

Hope shows her off.

My handsome grandson, X

The Dad helps.

X likes little bits of paper almost as much as GB

K and Danae try to save a Beta fish who was fed Froot Loops

Hope and Danae getting in the spirit

Elly, Hope and GB

X can't wait

The crew is ready for ornaments.

Danae always takes care.

Speechless BIL (my favorite pose)

Our 2010 Tree

Hope likes breakfast

Garrett and Hope try to feed koi- it would be easier if they waited for the ice to melt.

Waddles, Josiah, and my sister, Lynn
Merry Christmas from our family to yours!

Thursday, December 23, 2010

Building towards Christmas

We are in North Myrtle Beach and my oldest son, J, and his family joined us Monday. My sister and her family arrive tomorrow. Hope has regressed quite a bit and is forcing us to keep her directly with us at all times. GB and X are thrill to see each other and they complete each others' thoughts 75% of the time. The rest of the time, well... They need a lot of alone time, each with an adult that can help them regulate. The older kids think we are overreacting one minute and want to know why we have a raging child twenty minutes later. The older crew are pulling their weight so far and I think that we are as ready as we are going to be to add my sisters five and her dog tomorrow. I am sleeping in front of the fireplace. That way, I can see and hear everything, especially the teens.

This is Sandy. She was totally Mom's dog before she passed. She is a Labordoodle.

My mattress was set up in front of the fire place, in the middle of the great room.

MK and Mali

Hope enjoyed the wide open spaces as the ocean, and seems to be a water magnet, as well as a dirt magnet.

X and Hope- a year and a day apart.

Funny Faces

Two peas in a pod!

GB really is attached to Hope.

Mali with his Grandpa

So Cute !

Uncooperative Bunch

Best we could manage.

Friday, December 17, 2010

Season's Greetings

Tomorrow, we leave to join my family for Christmas. I still have my sister and for that I am very grateful. My son and his family are coming. I really hope the adult who visited in July is the son who comes for Christmas. The girls are wound tight and can't wait to leave. Hope opened her gifts from her ex family and liked them and left them. It has 5 hours since she opened them and there hasn't been any residual damage.

MK and I are coming to an understanding, of sorts. Every time she says something unkind or negative about GB, I simply remind her that GB is my child, just like Mali is hers. She has been much more careful about what she says.

Hope had a meltdown in the waiting room, when it was her time to come out and GB's turn to go in. Full blown, spitting, screaming, and trying to bite. I quickly got her into a level one hold and kept her there. A woman in the waiting room was very annoyed. She told me if he (Hope) couldn't behave any better in her waiting room, I would have to take him (Hope) outside. It was 17 degrees out there and the building is located on a three lane highway. I had lots of answers running through my head, but none of them were nice and I do try very hard to be a good role model. I said to the woman, "I don't think so" and put my attention back where it belonged, on Hope. The rage passed (they all eventually do) and Hope climbed on my lap for cuddles.

Blessings to all during this holiday season. Remember to be grateful for the family you have to celebrate with- they are a gift from God and don't come with a warranty. Treasure them while they are here.

Wednesday, December 15, 2010

Pre Christmas Triggers for Me

We got a huge box in the mail yesterday. During this time of year, it is a common occurrence.  I thought nothing of it and put it aside until I had time to deal with it. MK thought it was pajamas, which we were expecting-  17 pairs to be exact. It wasn't. It was five individually wrapped presents for Hope, one from each member of her old family. Naturally, the girls immediately noticed the sparkly gift wrap. I put the gifts aside and tried to distract them, but GB is reading well enough that she was still figuring out the labels after the gifts were no longer in view. She figured it out. She shared it with Hope.

D stopped by for 15 minutes between 4pm and 5 pm and complained that he was tired of being treated like a slave. I don't know whether to put an eviction notice on his door or an emancipation proclamation. Either way, it will be dated January 1,  2011.

MK has a list of Christmas traditions she remembers from when she was small. There is no way that my present configuration of kids can handle that amount of stimulation. I offered to go through the list so we could pick out which traditions are doable. So far the only response I've gotten from her is "Stop acting old."

And that is only 4 of the 16 people I will be sharing the week before Christmas with. Ho Ho Ho.

Monday, December 13, 2010

A Quiet Weekend

The girls got their quiet weekend. The did not leave the house at all. Instead of going out Friday night, we stayed in and had a pizza party and watched Frosty the Snowman. Saturday, every one woke up with a simple URI.  We played games, we had waves of little paper every where, they helped make waffles. Hope blew up a couple of times, GB was convinced that everyone hated her and liked Hope better. We took advantage of the lack of commitments to process these feelings with her and it seemed to help some. Sunday morning, every thing outside  was covered with ice. A full day in Sunday was the best end to our weekend.

Friday, December 10, 2010

Another Day Gone...

Yesterday is gone.

I had to be at a hospital two hours away for a procedure that was scheduled to start at 7 am. GB has been so dysregulated, I decided to bring her with us. MK agreed to get Hope up and on the bus. After 3 1/2 hours of being stabbed very, very, very slowly with a four inch needle in my left hip, more times than I cared to count, and three full MRIs (i am claustrophobic), they decided their procedure wasn't going to work. GB had no patience left for the ride home.

When we got home, the painkillers I took before we left finally kicked in. I laid down and let the hazy people around me do their own thing. MK put an end to that. Her baby was running a fever. A real fever. He needed to see a doctor. I pulled myself out of my haze and told MK she would have to drive. She agreed, but said I had to come in case he had a problem. I went to make sure GB was ready so we could leave as soon as Hope got off the bus. GB was by herself, in front of the TV, drinking Pepsi. Pepsi as caffeine in it. Even when GB is stable, she can't tolerate caffeine. When she is already manic, it is not a pretty picture.

We got through the doctor visit. We made it home. Hope is still trying hard to be a reflection of GB. GB was bouncing off walls and Hope thought it ways great fun to bounce, too. I kept them contained in the living room, with me, and tried to pull them in and center them but it didn't work.

Dinner is always difficult for Hope and last night was harder than most. She laughed, fell off the chair, spit her food out, complained constantly (yep, even while she was laughing), and managed to eat almost nothing. The Dad usually handles her during dinner since he doesn't think I have enough tolerance with Hope. Every couple of minutes, for no reason that I can find, Hope starts a loud, high pitched screeching. My reaction is to remove her from the table. The Dad is working with her, trying to eliminate the behavior without removing Hope from the table. Last night, I had no tolerance for even the idea of a family dinner, much less actually sitting through one. As soon as GB was done eating, I took her upstairs to get ready for bed, take medication, and cuddle in a calm atmosphere. Thankfully, we have a big house, so Hope screaming downstairs didn't really ruin our calmness. I had emailed GB's shrink and emailed back, raising her lithium again. I gave her the extra capsule and a prn. She went off quickly. Hope didn't. She threw her blankets off and screeched that someone had to cover her for almost thirty minutes before she finally gave up.

Yesterday is gone. I have hope for today. The girls have a half day at school today. We are going to stay in this afternoon and be calm and mellow. At least, that is the plan.

Wednesday, December 8, 2010

3 Strikes

Today was suppose to be a very busy day. Hope had a field trip to the ice skating rink and has never ice skated. She was very agitated. GB is on day 7 of her latest manic. Not fun. Both girls had therapy last night.  The therapist reported that she still doesn't know what makes Hope tick and that GB has a tenuous hold on reality. Sigh.

Today Hope was suppose to finish the evaluation with the new shrink. The Dad picked her up early from school and started on the hour journey. Halfway there, her office called and said she went home sick. Meanwhile, I had an appointment with a neurologist. Shortly after I signed in, I was told the neurologist was sick and went home. It is rescheduled for next week.

When I got home, an email from Hope's Texas mom was waiting. She said her youngest child, who is almost 4, had been crying for Hope and they would really like to talk to her. I haven't answered because I don't know what  to say.

What I really want to do is go to bed and start over with tomorrow.

Monday, December 6, 2010

A Manic Weekend (the short version)

Start at the beginning. GB came home from school Friday completely manic- racing thoughts, pressured speech, no ability  to modulate her voice and greatly looking forward to the weekend. Hope came home very unhappy, having lost all of her recess and not gotten her prize at the end of the day. GB was oblivious and Hope was jealous- and we met friends for dinner. Long Evening.

Saturday  the girls woke up the same as they went to bed- GB manic, Hope jealous. We cleaned up the house in the morning, some of our friends and GB's friends stopped by to decorate cookies and celebrate GB's adoption in the afternoon. Both girls went to parents night out at the gym, and the Dad and I went out to dinner, childless, with friends.  We didn't pick the girls up until 9:30, and by this point GB was manic and tired (although she didn't know it) and Hope was tired and figured crying was easier than any thing else. Hope was up until after 10 and GB finally went off somewhere around 11pm.

Sunday the Dad insisted on church for him and the girls and wanted MK and I to come. We did and MK brought Mali. That meant waking the girls up early, after a bad night. The girls had Pop Tarts and cookies for breakfast, cupcakes for lunch (not my idea). We got home from church,  the girls were fed real food and then watched TV. The Dad rested a while, then took both girls to see his mother, driving over an hour each way. The four of them went out to dinner and it was well after bed time when my guys got home. GB was manic and couldn't stop laughing. Hope decided that manic looked fun and joined in. The dad was spitting tacks and didn't look like he was in much better shape then GB. I was soooo happy when every body was in bed.

This morning the Dad left early for work. I let the girls sleep in. When they finally woke up, both Hope and GB were better regulated. We went through our morning routine, then I drove them to school an hour late. Additional commentary can be found on the other blog if you are interested.

Thursday, December 2, 2010

Taking Slow Deep Breaths...

Today, I got up the courage to tackle my latest dragon.  Several weeks ago, I was caught by surprise when what I thought was routine neuro-psychological testing started with the head of the neuro-psych department at the George Jarvis Clinic telling me GB was on the spectrum. No, not FASD (although she said that was still there), ASD. How can a child start EI services at 7 months, special ed preschool at 33 months and receive special ed services for 2+ years from the district and have everyone miss autism? The psychologist told me about all the services GB should be receiving and is not. It was a very detailed discussion that lasted over 2 hours. I remember it happening, but I don't remember a single service that GB needs and is not currently receiving. Not one.

I have always been adept at getting the services my kids needed. I have never been particularly interested in following protocol and I absorb information about my  kids' disabilities thoroughly and efficiently. So why is it that, three weeks later, I have done absolutely nothing. I have the woman's phone number- so it is not because I don't know what services GB needs- a phone call would take care of that. It is not a lack of time; with both girls in school, I have one or two days without appointments most weeks.

I have to conclude it is fear. Fear of what, I am not sure. Fear that I will be unable to get GB what she needs? Fear that there will be something else lurking in the shadows, waiting to be found? Maybe it is fear I shouldn't have taken on Hope. I am not sure I would have if they had given me this information back in July when they first saw GB. Fear is not usually a good place to operate from.  Rather than spend more time and energy thinking about it, I decided to call the ODDS (Office of Developmental Disability Services) and request an intake package. It is a tiny step, but at least I am not running from my dragon. And, there is always tomorrow.