Rainy Day Schedule - 9-22-07

Dearest Friends and Family,
Please excuse any typos. My keyboard is getting a little tired and needs to be replaced. I type too fast for it these days. I hope the family doesn't feel the same way about me! hahahaha And there are no pictures with this blog because it's having trouble publishing the pictures for some reason! Sorry! Just picture a beautiful blue eyed girl with dark curly hair in a green shirt and a backpack on her first day of school and a handsome boy asleep on the couch with rosy cheeks from a fever!

It's a rainy day here in beautiful Southern California! A very rare rainy day. It feels really nice and the air smells so neat after a little rain. Of course, all over the news it's "Storm Watch 07"! Aren't we funny here in L.A.? I hope you're enjoying the weather!

We just completed the 3rd week in school and what a 3 weeks it's been. Never EVER a dull moment in this house. I'll start with Parker. The first couple of days, he continued with his separation anxiety and it was a nightmare for Shelee every morning. His new teacher is more stringent and no-nonsense and Shelee adopted that stance too and Parker sucked it up and moved on. He is literally shining now. His writing has improved, his coloring (which he absolutely dislikes) has improved and his attitude towards school has improved! He's actually in a good mood when Shelee picks him up! He just loves structure! We're very proud of him.

On Tuesday, this past week, when Shelee picked him up from school, he burst into tears when he saw her. He had a funny look about him and when she hugged him she could feel that he was burning with fever. He had had a bit of a tummy ache in the morning but come to find out he suffered all day long. He didn't know enough to tell the teacher he was sick. He said he just put his head down at his desk and cried quietly, then got up and got a tissue to wipe his tears. Shelee asked him why he didn't tell the teacher he was sick and he said "She couldn't help. She just passes out band aids." Well, he had 103 temperatue and a bad headache. By the time Matt got home from work, they decided to take him to the doctor's. They gave him medicine and told Shelee to keep doing what she'd been doing but to watch for any neck pain.

Well the next day he had a temp and slight headache throughout the day but it seemed he was slowing improving But, at 2:00 in the morning on Thursday, Shelee came and woke me up to tell me that they were going to take Parker to the Emergency Room. He was burning up again and he was complaining that his neck hurt. They got home about 5:30 and they hospital had gotten his fever down. By Thursday night, he was feeling much better. He, of course, was home on Friday too and is doing better except for some congestion. He's going to have some homework to make up, that' for sure!

When they were at the hospital, he was laying on the bed and Shelee and Matt were standing around him and he was just jabbering away. He asked Shelee a question about something and she didn't know the answer. So, Parker said, "Ask Jesus!" Shelee said "What?" He said "Ask Jesus! You know! Jesus!" Shelee said "I don't know what you mean!" He said "ASK JESUS! Cookie ALWAYS asks Jesus on the computer!!!" Then Shelee and Matt knew what he meant! He was actually talking about
ASK JEEVES, a search engine that COOKIE uses on the computer. How funny is that????? He's such a funny kid!

Speaking about COOKIE, it's been a very difficult and long 3 weeks. The week before school, COOKIE went to a roller skating birthday party for her cousin. Five minutes into it and she fell. She injured her right wrist. We got ice on it immediately and she vomited the minute we got her outside, from the shock and the pain. Shelee and Matt took her directly over to the Emergency Room and it was confirmed that she had a broken wrist. It's called a XXXX fracture and they said if she'd been "full grown" she would have broken it in half. Oh brother. Thank God she's only 70 pounds! So, you guessed it, she began the biggest school year of her life with a bright HOT pink cast on her right hand. Oh yeah. It had to be her right had.

Let me digress....COOKIE is in school for 2nd through 5th periods. Because she's still on immuno-suppressants and still not fully recovered from her bone marrow transplant, she can only attend school part time. PHYSICALLY, she's struggling. On a daily basis, she has to push herself to accomplish her goals and at the same time, not focus on her limitations in order for her to focus on her tasks at hand. All of this for an 11 year old girl who's had little to none formal schooling, who's been fighting for a space in the "normal" world and her right to be there for most of her life, who's now at a 70 pound and barely holding on weight and surviving on little food AND a cast on her right hand! Kind of puts things in perspective, doesn't it?

You know how when you have an injury and it begins to heal it itches? Well, even more so with a cast! So, COOKIE put a pencil down her beautiful pink cast and began scratching. Yup. She came to Shelee just before bedtime and said something was in her cast and was poking her. She said she thought something happened when she was scratching. So, the next day the doctor said "Bring her in immediately!" Shelee had just taken her to school so she turned around and went back and got her out. NOW she has a beautiful RED cast! The doctor told her it happens all the time. The eraser cap had come off of the pencil and was lodged against her skin. Thankfully, it didn't break the skin! And yet another lesson learned. :-0

Well, COOKIE has been doing the very best her mind and body will allow. Her first cast wass very confining but she conquered it and was able to write. Her new cast is better so she has more mobility in her fingers. The first few days, she had to take medicine when she got home from writing so much. Then, reality began to set in and the newness began to wear off and the load became more than she could bear. Did she quit? Not on your life. She did falter however. The "friends" began their drama and COOKIE just doesn't know how to handle it. The homework became more than she can handle, partially due to her writing limtations. By the end of the 2nd week, when Shelee picked up her, she got in the car and burst into tears.

I forgot to add that COOKIE also has to wear a mask in all of her classes. She thinks nothing of it....she's been doing THAT all of her life! Whenever we're shopping or wherever we are, people (MOSTLY kids) will stare. COOKIE always waves and smiles with her eyes and usually they wave back. Well there was one little boy in one of her classes that decided that it was his job to give her a hard time. She asked him to leave her alone a couple of times. She said she had had cancer and had to wear a mask. He told her she had germs and if anyone got near her they would die. The very next day, Shelee had to go to COOKIE's school for some other reason and was standing with COOKIE when the boy walked by. Shelee waved at him, called by name and said "Hi!" When he walked by again, he waived at Shelee! Come to find out, he's a troubled child and it would seem he just needed someone to be nice to HIM!

Arrangements have been made to sit down with COOKIE's teachers and clarify COOKIE's situation. It's important for them to know her, where she came from, what she's been through, her current status and to give them a more clear understanding of how badly she wants to be there. Are we asking for special treatment? YES. She's spent her life with people that love and adore her, unconditionally. Now she's out in the real world where they don't know her and she has to make a spot for herself. It won't happen overnght but I believe with everything that's in me, that the people that are governing her days and who currently have the most influence on her have a responsibility to HER to know her background in order to treat her accordingly.

Additionally, she's still experiencing a lot of diffculty eating and keeping the weight on. It's all she can do to drink one BOOST PLUS a day. Currently, her doctor's are arranging an appointment for her to be scoped, top and bottom. She will have to clean herself out and be put to sleep for the procedures. This is weighing on her mind as well. Wouldn't it be weighing on yours?

Her medical team is actually trying to determine if she has graph vs. host disease in her tummy in which case, if she does, she will be put back on more meds including steroids. If that happens, due to the type of medication, she will NOT be able to attend school. She will be homeschooled once again. Also, her hair has been falling out, most likely due to vitamin deficiency. We simply cannot get her where she needs to be. Talk about carrying a heavy load! WAY too much burden for one little girl.

Also, and this is really incidental in comparison, I went back to work. I've been off for 22 months and it was time. I returned to Northrop Grumman Space Technology and was fortunate enough to get a very exciting and promising position, very different from what I've done for the last 10 years. Mentally, it was really difficut to return to work because I love being part of everyday homelife with the kids. It doesn't help that several people that I'm close to are retiring and here I am going back to work! Woe is me!

Lots of changes in this house......Matt went back to school, after having the summer off, Parker is in the 1st grade, COOKIE is in school, I'm back at work and Shelee has just become this efficient and steadfast pillar for the entire household. I mean dinner is ready when I walk in the door! Can't beat that!

Tonight, Shelee and Matt are going to Shelee's 20 Year Class Reunion! Wasn't it just yesterday that the two of them were going to the prom??? Oh, you didn't know they were high school sweethearts? Well, they were. They have their prom picture on their nightstand. Then they both went their own ways and years later, Matt showed up and they've been together ever since. When it's meant to be, it's meant to be....no matter what. They're a great balance for each other.

In between all of this EXTRA stuff, life happens and we keep plugging along, just like the rest of you! When I actually start writing about it I realize how much EXTRA stuff we have! It can become overwhelming if we let it but we fight it daily. I wish the answers were right there for us, as simple as getting on the computer and typing "ASK JESUS".

Wishing you all love,
Cookie, The Grandma