Below are the 25 most recent journal entries.
i was thinking about ash
i was thinking about asj today she was ans will continue to be the closest thing i ever had to a daughter. i just am so greatful that josh came into my life i just wonder if that s how he felt about ash. she was sucha beautiful child. vash reaminds me of her he even kind of lokks like his sister.
Going to be gone
I'm sorry Ash but I wont be able to visit you for your birthday this year. I will be gone for a long time. I will visit you before I leave though.
Check out the new pictures of Ash.
Went to go see Ash yesterday for an hour now that I'm not sick anymore..
She smiled when she saw me! Thats the first time I've ever seen her do that :) She also indicated that she wanted to be held-well, I think she did-she raised her arms when she saw me, and when I picked her up she began to suck her lip and fall asleep.
I'm glad I was able to see her, wish I had more time to take her places-with that cast off it should be easier to take her out.. my classes end this week, so maybe I'll take her christmas shopping this weekend or next :)
Still need to sort out visitation for xmas..
Thanksgiving was pretty nice..
was a little late picking Ash up; lots of traffic-everyone trying to go to the restauraunts for thanksgiving lunch...
Picked Ash up-she was so happy to see me! Borrowed her little red chair, and packed her up with a couple toys (altho we really didnt need them) and off to Grandma's house we went..
She loved the car.. watched out the windows the whole way there, looking at all the Holiday lights on people's houses..
Got her to Grandma's and took her in the house, she was so happy to be carried all over the place, I held her in my lap and watched Scooby Doo with her-it wasn't teletubbies or Blues Clues, but she seemed happy :)
She's on so many different types of medication now.. on top of the Robinul, Tegratol, she's also on another type of anti-seizure med and pain killers for her hips..
She was wiggling her legs too, whenever I wiggled one, she'd laugh and wiggle it back :)
We propped her red chair up so she was level with the table, and she was able to interact with everyone at dinner, but she fell asleep half-way through, and continued dozing until it was almost time to get her back for her 4 o'clock nebulizer treatment.
I think she'll like her meow-chi I got her for yule.. and we're looking for remote-control toys with remotes that can fit in her hand.. something that she will associate with 'this button makes that go'
Grandma got her a little remote control train for her too :)
The only time she cried was when I dropped her off.. she was sooo upset that we had to go, but I also had to be in Centralia and two other places for dinner and she wouldn't have liked the trip..
I saw Ash's brace yesterday it isn't as obtrusive as I though it would be. The nurses say that she is tolerating it well also. Ash was pretty upset most of my visit pretty much the only time she was quiet was when I was rocking her I found a way she like since she isn't a fan of the rocking chair and when carrying her so I spent a lot of time carrying her she wasn't to interested in playing with her toys so I didn't have much of a choice. There is the cutest picture on the fridge of Sean playing with Ash's hair. That is too cute.
I wasn't able to go see Ash for the second time this month-I came down with a bad cold Thursday night with a sore throat and a fever :( I chose not to go see her, she doesnt need to get sick right now with all she is going through. I'm almost over it though, just a few more sniffles to go. Will be picking her up Thursday for Thanksgiving dinner (lunch?) so I'll get to see her then :)
Need to talk to the Ashley house about a good carseat for her.. the one I have isn't supportive enough for her back and legs-makes her sit up too straight.
Going to call this morning and see how she is doing.
The visit with Ash
I signed the paperwork for Dr. Belco and Andrea the P.T. to work with Ash. Ash is still in pain the L.P.N. thinks it is her hip rotation causing her pain. How are we supposed to know for sure though they give her pain killers and she does better so it all works out in the end.
Josh was trying to steal Ash's socks after his father left so I gave him a newspaper to rip up. The visit went well Ash was content.
Getting the cast off
The cast came off without a problem. We went to Tacoma general with one of the new staff that is taking care of Ash today. Ash's skin is so bad after having that cast on she has such small frog legs now but she is already moving them. The whole time they were cutting the cast off Ash was find the only time she maid a noise was when she moved her leg for the first time she let out a little scream then went back to her quiet self.
The doctor left an order to have a brace made so we went to get the measurements for that and it should be ready in a few days. Ash slept the whole way there and back it was nice to see her sleep she has even gone whole nights without sleep I am going to keep up with that and see how she sleeps now and also go to her physical therapy appointment and see what the have to say about her legs. She is to wear the brace when she sleeps and to have a pillow between her legs during the day he just wants her to have the legs not crossed. I left her taking a bath she didn't seem to mind the water hitting her legs, but didn't enjoy it as much as I thought she would. Well I think I covered it all.
Pictures of Ash
Here is Ash Leah and I yes the famous Mr.Joshua with a stupid smile
( More Pictures InsideCollapse )
I have been told that Ash isn't sleeping well. They don't know for sure what is causing it, but they think it might be her new roommate Josh. He has some equipment that is loud and makes the room worm so they belive that might be keeping her awake. She had been awake since midnight yesterday with about a one hour nap ending about the time I arrived at the Ashley House. She was upset like she has been since she got the cast on so I did a few things I knew she liked, but ended up carrying her for an hour or so to keep her happy that house is pretty small if you walk around it a few hundred times. So after a couple of hours I got her to fall asleep and the nurse came up and wispier to me "We took a vote and you get two gold stars for getting her to fall asleep" and put two gold stars on my shirt witch now reside on my computer screen. She ended up sleeping for a few hours I got to chat with Josh's family and Nicole while she was asleep and had a few minute to carry her around before I left.
Well, the event of holidays is coming up soon..
I'd like to take her out for a couple hours on thanksgiving so she can see my mom and her family, and so her grampa can see her too, cause he wont be in town for christmas.. We'd like to have her for an hour or two on christmas too.. but not for the whole evening, because she gets so stressed out sometimes, especially when she gets worn out.
that and I have no idea what her father's plans are, I'm sure he would like to see her too.
Halloween and holidays..
Went to see Ash sunday.. she was kinda upset when I walked in the door - she had just woke up from a nap. She loves her arms being pulled up to a sitting position.. made me so proud when she lifted her head when I sat her up!! She's doing so good with that! :)
I sat and watched Blues Clues with her and Ryder for awhile, she was pretty involved in the show-but hanging on to my finger the whole time.. when I tried to move my hand she started to fuss.
The family wants to see her for Christmas, and Thanksgiving will be @ my mom's house. So I'll pick her up for that, and her grampa wants to see her for thanksgiving too, cause I guess he is going south for christmas this year.
Ashley house already has a costume for her for halloween.. I was thinking about making her 'ribbon fairy' for her, but she's still too small for it-its a size 3 costume. I'll make it for her next year - she should be big enough then :) They're taking her to the hands on museum here in Olympia-her nurse invited me to go along :)
Her cast will be off soon.. I'm sure she will be soooooo happy without it! Its still going to be a painful ride however, she's going to need some serious therapy for her legs as she hasnt been able to move them much for so long. Her incisions are all healed up, there's little scars there, but it doesnt look nearly as bad as her scar from the g-tube surgery did.
Talked to Bonnie today-she is the lady who runs 'Children with Special Health Care Needs' here in Oly. She is going to go see Ash this week, she hasnt seen her since last year. She's sending me some information on services Ash will be eligible for soon, and a list of things she feels Ash needs.
I'd still like to see Ash be able to use a joy-stick powered wheelchair. At the events I've seen another child who has one who is just like Ash. Definitely a device worth looking into for her!
Pictures of Ash
Here are some pics of ash
And the graffiti that the staff put on her cast :)
( More hereCollapse )
Nicole bought Ash this cute ladybug costume for Halloween it is so cute. She was working on the suit to make it fit over her cast while I was with her today. Yay only a few weeks left until the cast is off.
The 27th Nicole is taking Ash and Ryder to the Childrens museum. I can't wait to go with them that will be so neat to see Ash react to all the people and stuff there :)
Ash was fussy all day I had to carry her around to keep her content. We played a game with Ryder today he crawled into the bedrooms and hid behind a door. I held Ash upside down and would open the door and Ash would giggle at Ryder then I would tell him to close the door and he would. Then we would do it all over again they both loved it :)
I got hold of Ash's information they are going to make a post for all the staff to know ware every thing is so that any parents can get all the info on their child YAY!
I went to see Ash yesterday.. missed going last Sunday because of a medical issue :/
She was really happy to see me :) I picked her up and sat in the rocking chair with her, she was pretty upset when I got there.. took me a few minutes, but I was able to calm her down by rocking the chair.. which is new, I've always had a hard time calming her down.
She got really heavy after awhile, so I set her on her foam pad on the floor.. she didnt cry, just held onto my hand and made sure I watched Blues Clues with her heheh. Now I'm developing a liking for that show after being subjected to an hour of it..
She's doing so much better, I can't wait for the cast to be off-she'll be so much happier.. I'm glad she hasnt caught the nasty cold/flu thats going around; I'm doing my best not to get it cause if she got it, she'd be real upset :/
My Saturday visit
Ash is doing good the cast isn't hurting her I was able bounce her and make her laugh she showed no sign of pain. Her cast has graffiti again the nurses are marking her. One of them drew a nice little bunny. I tried to get her logs to put some info on how she is medically doing, but the people on staff didn't know what they were so I have to talk to Dawn Monday she will know she knows every thing.
Ash has very distinct TV viewing habits when the cartoons she didn't like came on she started complaining and I started flipping channels. She calmed down until she realized that there was nothing good on so I had to put on a video. She was happy the entire time when it was over all I could find was MTV so two videos in she fell asleep to No Doubt. I will have more when I can get hold of her paperwork.
Went to see Ash last night, she has a new BLUE cast on :) She's also a little more spread out too.. and not too pleased with that. She was pretty mad when I got there, the nurses have been carrying her around non-stop to keep her from screaming..
She's doing good though, I guess the doctor said she is doing better than expected and probably wont have to have the cast on for too much longer..
when I went to leave, she was pretty engrossed in 'Sheep in the Big City' some weird little cartoon.
I just found this in a newsletter I got...
Some people see a closed door,
and turn away.
Others see a closed door,
try the knob,
if it doesn't open...
they turn away.
Still others see a closed door,
try the knob,
if it doesnt open,
they find a key.
If the key doesnt fit...
they turn away.
A rare few see a closed door,
try the knob,
if it doesnt open,
they find a key,
if the key doesnt fit...
they make one.
I think I'll cut this out and post it above Ash's crib...
Took her for her pre-op appt today, she was a little fussy.. but I think she was just sick of waiting for 2 1/2 hours..
but as far as the doctor said, she's doing great so far, her incisions look good, and she should go home same day :)
Not really much to say. Ash will be getting her cast redone at the end of the month her mother is taking her to that. She is more upset than before the operation, but I would be too if I had to ware that cast. She is doing fine other wise her pattern is regular no real big complaints.
The casting will be for four months instead of the original six and her swelling at the incision finally went down in the last week so there is no more worries about the surgery.
I just called...
I just called the ashley house, apparantly Ash has a bit of a fever.. I was hoping to take her out Saturday.. damn..
I wish I had more time to spend with her.. and I wish I knew *how* to spend it with her.. personally sitting still for too long bugs me :/
She's been really fussy with the little pink cast.. she hates it so much.. I wish she didnt have to go thru this.. stupid #&($&% hospital anyway.. she better get everything she needs for the rest of her life taken care of by that damned hospital.. poor kid deserves it!
Ash is still not sleeping like normal. She wakes up around one in the morning. She is getting codine plospgate about every four hours to keep her content.
Out of the hospital
Ash should be leaving the hospital around noon today. She is complaining, but is ok. I left her watching Sponge Bob. Hopefully she will stay content.
Current Medication List