Wednesday, November 30, 2011

Feeling Better

 It's great to be able to vent on here and get such comforting responses.  My blog is meant for me to release some stress but also inform the world about what it's like raising a special needs child.  This is something that I will look back on years from now and remember how I felt when I wrote a certain blog.I'm hoping down the road I'll look back at all the things I thought my daughter wasn't going to accomplish and notice that I was wrong.  Maybe she will be able to read this when she gets older.  I'm so blessed to have the friends that I do.  You support me when I write things that make me cry.  I don't mean to make you cry, but I just want people to understand.  I hope this also helps other know that they are not alone in the world.

I Fixed It

My blog always scrolled to the bottom first and I read up on why it was doing that and it was because of the calendar at the bottom of the page.  I'm sure none of you are going to miss that.  At least it loads right now!

Tuesday, November 29, 2011

Getting Over What She Can't Do - Part 2

Last night I laid in bed crying after the post I made yesterday.  I am really realizing how much I'm going to miss out on.  My daughter not being able to talk may not seem like a big deal, but I feel like I will miss out on so much that is going on in the little brain of hers.  I will never know what her favorite color or food is.  I will never talk about a boy she likes or how her first date went.  We will never discuss tv shows or movies.  She will never read to me.  She will never tell me that she loves me.  We will never discuss what she learned in school or at church.  She will never be able to tell me who her best friend is.  I wonder if the children she grew up with will leave her behind because they can't communicate with her.  It makes me cry and I hope that I can get through this stage quickly.  There's many stages of denial and when having a special needs child, you can go through them many times.  There's many times that I am strong and her delays don't even phase me, but realizing that she might not talk is definitely taking a toll on me.

Monday, November 28, 2011

Getting Over What She Can't Do

I feel like every time I turn around, I hear about someone's child learning something new.  I look at the children she grew up with and realize that they are light-years ahead of her.  I still feel like I have an infant.  I would like to have another child, but then I would have 2 babies.  I think the hardest is that she can't talk.  Everyone's children are learning so many new words every day and mine can't talk.  I wish she could show the world how smart she is.  When she was born I already was thinking about everything I can teach her before she gets into Kindergarten, but now I don't even know what to do.  We just take it one day at a time.  Everything that she learns is a blessing, but why can't she talk?  I feel like I could handle the slow learning better if she could talk to me.  I know that she is here to teach me things that I never imagined, but it gets hard.  Sometimes I just want her to be like everyone else.  Why can't she be?  Why can't she say mama?  Why can't she at least learn sign language.  I would love to communicate with my daughter.  I feel so helpless.  I would love to give this child everything, but it's not my job to construe God's will.  I know He will guide us through this, but it sure is frustrating.  God, grant me the strength to take care of the child you have sent me.  Give me the patience that I need when learning to understand her wants and needs.

Saturday, November 26, 2011

Upcoming Appointments

Liv has two important doctor appointments coming up.  One is Endocrinology which we discuss her Turner's Syndrome and what our next step is going to be with dealing with it.  There's not too much to do now, but we discuss the future.  They want her to take growth hormones, but not yet.  Olivia is the youngest patient they have ever had.  Usually Turner's isn't discovered until a girl never gets her period.  The other appointment is with a Developmental Pediatrician.  We will finally get some answers as to what she will be capable of doing.  Maybe even find out if she is MR or going to talk.  We have waited almost a year for this appointment, so we are very anxious.  I am bracing myself for bad news.  We usually get bad news at stuff like this and I never prepare myself for it.  I guess that's why I've been a little depressed the pass couple of days.  I'm coming to terms with the fact that my daughter might never talk.  It's hard to deal with.  I've never heard my husband say it, and he did this week.  Hopefully she will prove us wrong!

Wednesday, November 23, 2011

Getting Over the Guilt

Over the weekend Livy fell asleep downstairs and I carried her to bed.  It was really dark in her room and I put her in her crib.  She has a lamp next to her crib that turns on by stepping on the switch.  I was looking for it but it was so dark.  In the meantime, Livy starts screaming. I assumed it was because she was confused about how she got into her crib and wanted out.  When I finally get the light on, I notice that her gtube is missing.  Of course I went into freak out mode.  Doctors said the hole can close up in 20 minutes.  Well that made me realize why she was screaming, it was completely pulled out because I place her on it and when she moved, it was pulled out from inside her stomach.  I find it in her crib and know that I have to put it in myself (hubby was gone).  I was trying to put it in and she was crying and I felt horrible.  I finally get it in and she crawls around like nothing happened.  I then realize that I was supposed to use lube to put it in and that's why I had trouble getting it in.  Since I was in panic mode, I didn't clean it either.  Well she is fine and it took me about 3 days to forgive myself for it.  At least I know what to do differently next time!

Tuesday, November 22, 2011

Learning Lots

Livy is learning a lot of things right now, but the downfall is that she only does it once or twice and then you don't see it happen again for awhile, if at all.  She has gotten into her walker herself, crawled, stood, gotten out of her walker, pulled herself to a stand, and taken a couple of steps.  This tends to happen and then she will go months without learning anything new.  It gets frustrating.  I was thinking she might be able to walk by her third birthday, but now I don't think so.  She's very wobbly.  I know she is working hard and I think that's great, but I wish she could do  more, or at least consistently do the things that she learns.  Well all I can do is keep on practicing with her.  At least it's fun!

Friday, November 11, 2011

Pre-School

We went to a pre-school today to see if we would like Livy to go there when she turns 3.  We really liked the place.  She would start in Feb.  She would go 3 times a week and spend the other 2 days at Lauren's House.  So she will still have her friends from daycare.  This is very exciting to know she will be in a learning atmosphere but it's also sad to realize my baby is growing up.  I hope that we like it this much when she actually starts going.  The one 3 year old class was doing yoga.  SO CUTE!

Frustration

My husband has a teenage daughter that has been acting up.  This causes my husband to get frustrated and spend his time thinking about it.  I have to spend time trying to make him feel better and time with Liv can be wasted.  Just because he's in the room with her, doesn't mean he's actually mentally there playing with her.  I hate the fact that she can do this to my family.  I wish there was a way that my husband would fester over this stuff for days.  I don't like how I have to remind him that he has a wife that loves him, as well as a daughter that adores him.  If only she could understand how her stupid decisions affect the whole family and not just what she is doing.

Thursday, November 10, 2011

Her Last Quarterly Meeting

Today was Liv's last quarterly meeting.  When she turns 3 she will be with a different program.  I've gotten close to some of her therapist that it's going to be hard to say good-bye.  Hopefully we will stay in touch and they will get to see Livy.  They have taught her so many things and get just as much joy as we do when she learns something new.  They have taught me so many things about how to teach my daughter.  They will be missed!

Saturday, November 5, 2011

IEP

This week I went to a meeting to set Liv's goals for her IEP.  She has about 7 goals.  This won't start until she is 3, but we got started early on planning for her.  Who knows, maybe she can meet a goal before she even starts the IEP.  She is moving around a lot more.  She even crawls a little bit now.  You can tell she's unsure of herself and feeling weak, but she puts her desire over that.  Her services will basically stay the same excepts speech is getting lowered to only an hour.  Since she doesn't talk, I think they will add more time.  I think I'm going to check into seeing how much it would cost to take a sign language class.  I know that she could only use basic right now, but it would be a good thing to know.  Plus then it could be our secret language.