Saturday, January 31, 2009

Abby Doo

This is not a new picture of Abby but it is my favorite. We have been spending the last few days just dealing and learning. We are slowly upping her feeds. I finally accepted yesterday that I was babying her too much(who me?) and that I need to be more aggressive so she can get her complete nutrition. After I saw her get too much and be in pain with no way to burp or vomit I have been taking it too slow and that is not helping her.
She is very frustrated because the feeds are at two hours still and keeping her still for 2 hours is a chore. She's a mover and a shaker and has things to do and wiggles to see. She cannot grasp that she just needs to chill. Must be my kid or something. She is getting 250 ml fees at 125 ml per hour. Hoping to get that up to 250 per hour. I really wanted to be able to give her 6-7 hundred calories while she sleeps but our equiptment doesn't go that high so 500 is the limit at night for now.
I had a hard heart to heart with her PCP yesterday. We discussed what we both could have and should of done differently. What we both need to learn and realize about each others capabilities and about Rett Syndrome. If he was anyone else I would have kicked his ass but he has been with me from the beginning of this. The only one who would listen or believe me and the one that got her diagnosed. He respects my opinions and my knowledge. I think a few doctors(very few) and other Rett Moms are the only ones allowed to tell me anything in the I may be trying to fight too hard a battle I have no control of department. He was as kind as he could be about it and it was all stuff I already knew. All the things that bring on the tears I wont discuss.
So anyway.....Abby looks great. I look like hell. My eyes and face are swollen and patchy. I never had blemishes as a teen but boy I have them now. Stress is a bitch.
I need to write a Thank you letter on paper to the Admin Dept of Childrens Mercy at some point soon.
Maybe when I can think for more than 5 minutes at a time.......
Thanks for reading
T

Thursday, January 29, 2009

Thank you Childrens Mercy!

After almost 2 weeks we finally have our baby home. I am exhausted. I think I aged 10 years in this last 2 weeks.
The pic above is Abby having her first feeding at home. All comfy on the couch. I am a little concerned about her muscle tone. She seems very weak and wobbly and it seems she is constantly hooked up. Like everything else with Rett Syndrome it will take time to adjust. We are controlling her pain and she is very patient with our ignorance.
How does someone this sick and weak look this good first thing in the morning in the hospital? Dont ask me. She definately doesn't get it from me or her Dad.

I do want to make sure that I thank ALL of the residents, students, the two attendings , social workers,(S), and home health services. Kraig I don't really hate you. I hate everyone at 7am. I wish I could express in words how much it meant to me that those of you on the Orange team honestly expressed such an amazing interest in my Abby. You all made me feel that she actually is the princess we see her as. So many people just write our girls with Rett Syndrome off and none of you did. You really touched my heart and it was so clear that Abby was Abby to you and not room 21. I hope that you keep an interest in Abby and Rett Syndrome. We need people like you.
The nursing staff and care assistants were amazing and I know I am not the easiest Mom to deal with. I know I'm bossy and expect things done right now! Thanks for putting up with me. I wont post all your names here but I do know and remember each one of you. Thank you for showing me stuff over and over. Thank you for putting up with my exhaustion and attitude. Thank you for putting up with my odd and sometimes rude sense of humor. And most of all THANK YOU for loving and caring for my girl.
Thank you girls from Child Life for giggling with us in the hallways and for singing us to sleep. You are amazing.
If there is ever anything I can do or answer for any of you feel free to ask. I would be honored.

Sunday, January 25, 2009

Getting there

We are on our10th day here at the hospital. Above is Dr H. The love of Abby's life. She flirts and smiles at him and sings for an hour after he leaves. He is a great doc and really listens to us and is completely and totally concerned with Abby being comfortable and well cared for.
Abby's best friend Madison came to visit her yesterday and they played on the bed and sopke through eye gaze and giggles.

This is Abby kissen her Ne Ne and lovin on her baby that Madison brought her.
Right now Abby is taking 90 mls over 2 hours of half and half water and formula. Her stomach had shrunk that much. We are raising it 20 mls every 4 hours. When she gets to 250 mls of formula only we can go home.
We can't wait!!!!!!!!



Friday, January 23, 2009

Long Long week

I have to apologize to anyone who follows Abby's blog that it has taken me so long to update. Abby has been in the hospital and her father did not want me to post anything until his parents in Europe knew of the situation.
Like alot of girls with Rett Syndrome we had been unable to maintain a healthy weight for her. Her Doctor had suggested a gtube for her months ago and I had begged off with a promise that I could get her to eat more and gain weight. For months I tried and the more I tried the more she fought me until she just stopped eating almost altogether. Then she stopped drinking.
We could have one day where she would drink 3-4 bottles of formula and the for the next few days she would drink less than one.
She was the same with food. First she stopped eating breakfast all together and I was sending her to school empty. Soon the weight started to drop off until I took her to the doc because I was at my wits end and very worried. That was last Friday the 16th.
The first night they blew several veins trying to get a iv in. The same night several attempt were made at getting a feeding tube down through her nasal cavity into her stomach. After much frustration and bloody noses they started to feed her through IV. They feed herblood was taken a for 4 days through an IV while tests were performed.
Wednesday she has surgery for a fundo of the top of her stomach for her reflux. They also added a gtube at that time or visa versa. Her surgery was terribly scary and frustrating. The surgery itself was ok but afterwards her throat had swelled and she is a mouth breather so her oxygen level was in the mid seventies. Her 45 minutes in recovery turned in to over three hours without us knowing what was going on except that her stats were low.
Today is Friday so we have been here for a week. We are sore and tired but the staff her is incredible and they are taking very good care of her. I am receiving training on how to care for her feding and medicating needs while she recoops.
I want to thank all of you with all my heart that have sent flowers and videos and chocolates and packages. It means the world to me at this time. I will keep you updated the best I can while we are here.
This was the day after surgery with her new bear that Alexa and family sent
This was music therapy with Miss Laura. Abby really enjoyed the guitar
This is Lil Miss this morning. Snuggling and watching the wiggles.

Wednesday, January 14, 2009

Mood Swings


Abby did not have the best morning and my nerves are shot at this point. When I took her off the potty this morning and laid her on the couch she had a series of tremors. They were pretty vilolent and I was sure she was going to have a seizure. She yelled at me through them and looked around the room like she couldn't get a grasp of what was going on but she never lost it or eye rolled.

I tried to feed her a half an hour later and she took 3 forces bites then looked at me and spit out the last bite, raked her nails down both sides of my face and kicked the bowl upside down on the floor while letting out almost a growl at me. Then she just stared me down like she was gonna kick my butt or something.

She has had tremors before when she is nervous or something has scared her. This morning was quite a different story. Her appointment at Childrens Mercy isn't till Monday. I have a feeling it's going to be a long 5 days.

Monday, January 12, 2009

Big girls weekend

Lil miss thing slept in her own bed in her own room last night. She thought she was pretty slick this morning. She opened her eyes and blinked then looked at me and I asked her if she was a big girl and if she slept in her own room. She flew her arms up on top of her head and giggled and shook her little butt. It was so awesome. Hope it lasts. Keep your fingers crossed!

Tuesday, January 6, 2009

Back to school and more

Abby went back to school today. She was absolutely thrilled when she came home and babbled the rest of the night. This pic was taken just before she left this morning. We are trying to get Abby to back in her room and sleep in her own bed so we changed some things around. We wanted to get her a tv for her room that was 200.00 because it was a pretty pink and purple disney tv. Right before I went to get it I read the reviews and they were horrible. So her Dad went into the basement and got an old 19 inch we weren't using and took the case off. We painted it purple then sprayed some glitter and then a clear coat. We put puffy heart stickers on it. We already had everything except the glitter and the dvd player so she got the whole set up for about 30 bucks. And she loves it!!!!
She was so memorized. She will have to be in her bed soon so we are hoping she likes it. We are thinking of getting a twin blow up mattress for me to put at the end of the bed until she gets adjusted.
She layed in it to watch a movie last night but we couldn't get her to stay. Boy if I had a room this cool when I was little I could have been the happiest little thing ever. They did have tv's back then didn't they?

Friday, January 2, 2009

Not eating again


Well, our girl is refusing food again. I don't know what to do. She is going whole days without taking solids. We currently get 2 bottles of pediasure paid for a day. It's 11.00 for a six pack. Today she went through four bottles when I finally gave up about 6pm. She is just clenching her teeth and turning her head.

She's sleeping well, no fever, no GERD acting up. Her doc told us 2 months ago we needed to really consider getting her a feeding tube. My head knows that is probably inevitable and the right choice but my heart can't bear the thought of putting her through surgery or any unnecessary pain whatsoever. The thought that she can't tell me it hurts or that she doesn't want it makes me ache all over. Add that with the fact that her Dad is demanding that it be an absolute last straw.

I am dreading her weight check. I will need to schedule it soon. I should have had it done 3 weeks ago but I knew she hadn't gained enough weight.

I feel like I'm being a bad Mom