Updates

We got Liv's evaluation back from Elwin and it's a little tough hearing all of the delays that your child has.  As a parent you tend to think they can do more than they actually can.  On a good note, because she is so delayed, she will get many services to help her out.

A couple of days ago Liv got topical staph infection but at least the meds are clearing it up quickly.

She is getting her button changed today because it's been about 3 months.  They said we can do it ourselves, but I'm not ready to see her stomach.  Yuck.  The nurses can change it.

Apparently I was supposed to do a renewal form for Liv's insurance.  The problem is that I've never got one, so I never knew that I was supposed to do that.  Her insurance is terminated as of tomorrow.  I did apply for it again on Tuesday and I'm hoping to get a response soon.  She will be covered and since it's an easy case, I'm just hoping for it to happen quickly.  We made sure we stocked up on meds and supplies quickly before it expires.  Her nursing care will still continue because any expenses that occur during this lapse will be back paid when I get the insurance again.  So I'm very happy that she will still go to medical daycare and have nurses.

Oh the joys of everything we have to go through to make sure Liv gets what she needs and deserves!

A Long Week

I'm so happy that it's Friday.  Liv had a great week and now I'm looking forward to spending the weekend with her.  I took her swimming today after school.  She did really well.  I bought her an inner tube that is small and she was able to keep herself in it without me touching her.  It was great.  She has been walking everywhere.  She never wants to stop.  I wonder how much longer until she walks independently.

This Past Week

On Tuesday, Liv had a swallow test to determine if she aspirates when she swallows.  Liv being a child that barely eats, didn't eat the barium.  Big shocker!  I don't think that it's a test that she will complete any time soon.  On a good note, I took her walker and made her walk the whole time.  CHOP is a big hospital to walk around.
On Wednesday, Liv had an evaluation for Elwin.  They will provide her services when she turns 3.  She was tired, so she didn't show them everything she can do.  That's actually a good thing.  I want her to get as many services as possible.  She did go straight for the baby doll.  I guess it's time to get her some more.  We don't find anything out for 60 days, so the waiting begins.
Liv's friend Abigail had an outdoor birthday party today.  Livy just loves being with her friends.  They had a radio flyer wagon for her to sit in and Blake pushed her around most of the time.  She even put stickers on a tambourine as a party gift.  Everyone is saying that they are seeing a huge change in Olivia with how self sufficient she is getting.

Too Much Attention

I don't know what it is, but lately everyone feels the need to stop us and tell us how beautiful my daughter is or how her hair is just gorgeous.  I admit, my daughter is beautiful.  I just have never felt the need to walk over to someone that I didn't know and tell them how cute their child is.  We even had a modeling agency want us to sign her up.  I mean is everything center around looks?  She's 2.  I really don't want her thinking that she has to look beautiful for people to notice her.  Besides, beauty comes at a cost.
I've also noticed more people staring when she has the walker.  I'm glad she doesn't understand that she's different because it makes me wonder if she would want that kind of attention.  She is getting better with it which means that I will make her use it everywhere we go.  I guess I better prepare myself for the stares.

Still Having Trouble Gaining Weight

Since Liv had that bug a couple of weeks ago, she lost weight.  She hasn't gained it back.  We had to raise the amount of her feeds at night to help.  I hope it's working.  It's always some steps forward and then some back.  I will say that I don't know where I would be without full nights of sleep due to the nurses, especially now that we are both back to work.  It was nice having the summer off, but I think we all craved that routine that we all used to follow. 

Livy is getting better at using her walker.  She definitely can steer it better than she used to.

Next week she has a swallow study and an evaluation for her services.  Even though it's the second week of school, I will be taking 2 full days off.

Livy is missing 2 bottom teeth which is not normal but can be for her condition.  I wonder if she will have permanent teeth.