A Good Month

So for the past month, Liv has been doing well.  It usually works like this.  Bad humps then good.  We just work on surviving the bad ones to make it to the good.  Then we easily forget how hard it was and get slapped with another hard one (really not trying to be sexual). Of course we are enjoying this time.  Liv got a button tube place back in and it's working great this time.  Feeds are great.  She is up to the 7th percentile in weight and we will be discussing what feeding strategy we are going to use when we go to GI on Tuesday.  As some of you have seen, Liv took her first steps this past week.  Yes it was with a medical walker, but it's just like her walking alone.  I can't stop watching the video.  For those who missed it, it's posted on my facebook.  The walker she was using was one at her daycare.  We had her fitted for one and we are just waiting for it to come in.  They said up to 3 months but really don't think it will take that long.  We are getting anxious for it to come in so she can practice all day.  We went swimming yesterday and she was using her float.  She was feeling adventurous and would swim away from us.  It's good to see her getting more confident with swimming.  I would like to get her just a vest this summer so she can really start swimming.  At Liv's endocrinology appointment we found out that she will probably only reach 4'6" so she will need to take growth hormones.  They aren't starting yet because she is a good height for her age now, so we are just seeing what happens.  They will also check her ovaries at the age of 9 to see how damaged they are.  They will then start her on birth control to help her get estrogen and a period.
Summer is almost here and that means lots of time with my baby.  I am going to be taking her all over and tiring her out.  I plan to do something everyday.  She is not just sitting around the house.
Here's to a good month and a future of time off to spend with my baby!!!

Catching Up

So things have been busy because Liv is healthy for once.  I keep busy by playing with her all of the time.  She said mama for the first time yesterday.  She used to call me na na.  My husband and I have been bracing ourselves for her to get tested and the results to say that she is MR.  I'm trying to accept it, but it's hard, she's my only child.  Maybe she just has delays, but I think it's more than that.  She could say about 4 words, but she forgets hi and bye.  She forgot all done but now remembers it.  On a good note, she has been laughing like crazy.  She has been in such great moods.  She laughs all day long.  She loves to watch Mickey Mouse Club House.  She is such a great child.  She is starting to look more like a little girl than a baby.  I hope she starts developing more.  She does have more strength and loves to practice walking.  Next week she has her appointment to get fitted for walking devices.  I hope that will help her have independence by walking herself (with the device).

Feeling Better

So I made a plan for myself.  Since our house is a disaster zone, I have decided to clean one room a day.  That way I'm not overwhelmed by cleaning several.  Plus I'm a scatterbrain when I clean.  I clean up one thing and then take it to a room and clean something in that room and so forth.  After an hour, it doesn't look much different.  I'm not letting myself do that anymore.  One room a day and I'm sticking to it.  Also I went to pilates last night.  I kinda thought it was too easy.  I have pilates dvds that are harder, but I pay for a gym now and wanted to take advantage of the classes.  I'm finally making time for myself.  It felt real good last night.  So I'm hoping for that tonight too with modern dance!

ugh

I haven't written even though this is probably the time I should be venting the most.  I can't believe how many times we have been in the hospital lately.  It's been 5 times in 2 1/2 weeks and a total of 8 days in 17 days.  I really don't feel like I can handle anything else.  I've spent three weekends in a row sleeping there and I can't do it anymore.  I used to live for the weekends to catch up on sleep, cleaning, and relaxing and I've experienced none of that.  I feel like I need a maid to live here and not get paid because we all know that teachers are poor.  I need a break.  I really don't want to resent my daughter, but I hate that I have no life.  I knew having a baby would change things, but I had no idea it meant giving up everything, and I seriously mean everything.  I never get to go out with friends and I never get to go to bars and see my husband play and I never get to go out with my husband.  I mean who is going to watch my daughter.  I can barely handle it, so how is anyone else going to help?  I would give anything to not have to work.  I just need time.  I can't work all day and then deal with a sick child all the time.  I love my daughter to death.  Why does she have to go through this?  Why did this happen to our family?  I thought I was past this point, but now that there's so much going on, I'm back to it again.  I feel like I'm losing hope and faith.  I never in a million years thought this would be my life.  I never thought I would have a child that can't walk or talk to me.  I usually look at the positives of her milestones, but I just don't have it in me now.  I feel so burnt out.  I wish we had the money to get away.  I would give anything to go to Disney.  Liv just adores Mickey.  I'm sure it will take us awhile to save up that kind of money.  I just want to get away, even if it wasn't Disney.  We need a break away from this place.  We just need to go somewhere that we can enjoy the day and relax.  I don't think I know what that feels like.  Considering the last escape to AC resulted in a seizure on the way home.  We got to put over on the side of the highway to undress our daughter to give her meds rectally to get her out of the seizure.  I think I'm going to try to get out of work again, but I don't know how easy that will be since I was out 6 months last year.  I thought spring break would rejuvenate me, but we spent time in the hospital instead.  I would love to have another child, but I mean really, how could that be feasible?  I would love to know what it feels like to have a child more on their age level and one that eats.  Don't get me wrong, Liv is great!!!  She is so affectionate.  She is my life.  But I just wish I didn't have to give so much of it up!