Insomnia is Finally Over!

So Liv started Trileptal about 3 weeks ago to help with her seizures.  About a week ago we noticed that Liv was having the hardest time sleeping, which meant so did we.  She would just sit and cry.  It was awful.  Yesterday we figured out that it was the meds.  So we took her off of it without a doctor telling us it was ok.  I mean I can't wean her off because I couldn't stay awake for another night.  I was losing it.  So we put her on a back of med just in case and gave her some benedryl to help her sleep.  We figured it out for sure because she napped today and went to sleep at her normal time.  I'm so happy.  I sure was missing sleep.  Well now that we discovered 3 seizure meds give her side effects, I wonder what we will try next.  What a challenge!

The Good, the Bad, and the Happy to be Home

We went to my mom's for 3 days for a visit.  We only make it there once a year due to not wanting to travel far with Olivia.  She lives 3 hours away.  There's only one way to do this - start at the beginning.

Day 1 - The drive wasn't bad and Liv slept through half of it.  We stopped at my gram's to say hello.  We went to my mom's (which is where we were staying) to relax before going out for dinner.  My mom runs a daycare and wanted Olivia to be with her.  I could tell by the way Liv was acting that she needed to have a nap before dinner.  Of course my mom thinks that I just didn't want her to go to the daycare.  If only my mom knew what it was like to be with Liv without a nap and she doesn't nap at daycare.  We went out to dinner with my mom and her boyfriend, grandma and grandpa, and my one sister.  My sister and I haven't been the best of friends lately, so she decided ignoring my whole family would be a great way to make us feel welcomed.  (The reason we aren't that close lately is because she is trying to put her nose in my family business and tell me how to raise my step-daughter.  I didn't agree with her, so she decided to be pissed at me.  I guess my whole family has to suffer from this.  I couldn't imagine being an aunt of a 2 year old and completely ignoring them.)  After dinner, we went back to my mom's to relax then go to bed.  Liv got up several times during the night which made us miss having a nurse so much!

Day 2 - I took Liv downstairs at 6:30 to the daycare so I could sleep a little longer.  I went back down around 8:30 and the children were eating breakfast at table, but Liv was in a high chair off by herself.  My daughter already doesn't eat so putting her away from kids, not the best idea.  I took her upstairs to get ready to go to Knoebels.  We had a great time at the park.  Liv must love park food because she ate way more than I've ever seen.  I took her on a couple of rides.  She won't sit by herself so that limits the amount of rides she can go on.  I was trying to ask the guy at the moon bounce if I could go in with her and he told me that he would get everyone out and let us in there alone.  We had the whole thing to ourselves.  I was almost in tears when he offered.  Liv laughed more than I've ever seen.  She couldn't stand or even sit up, so I bounced close to her to make her move.  I also held her and jumped.  It was so great.  We stayed for a long time so when we went back to my mom's, it was time to put Liv to bed.  Liv hardly slept which meant neither did we.

Day 3 - I took Liv downstairs to the daycare at 8 but she didn't want to stay.  My mom text me about taking Liv to a playground for a little while with the kids from daycare.  I told her that I need to get her ready to go but really I was thinking what the hell is my daughter going to do at a playground?  Just sit there in the grass?  She doesn't walk.  That would be like taking a 6 month old to the playground for an hour and thinking that they are just going to go off and play with the other kids.  We decided to go to the public pool.  It was great when I lived there, but they are now trying to update it to the point that it just sucks and nothing is open.  There wasn't even grass to lay a blanket on.  Like my daughter is going to sit in a lounge chair.  So I walked around the pool and Livy gets stung by a bee in the neck.  Of course I'm scared she's allergic.  Luckily she only broke out in a rash.  I took her back to my mom's.  My mom wants her to stay at the daycare but I want Liv to nap before we leave for the trip home.  If she's really fussy, we couldn't make a 3 hour trip.  I called the developmental ped. to find out how much longer it's going to be until she can get an appointment.  They tell me that they never go the paperwork that I filled out and sent back in May.  She's like why did you wait til now to call.  I said that I was quoted a year and wasn't trying to bother them.  I should have known better.  She is shipping new paperwork and I get to start all over.  Trust me, this time I will call every week.  I was so frustrated and in tears so I just wanted to go home.  By this time, Liv is napping.  We pack everything up and head out.  Last night we slept through the night because we had a nurse!!!!

I wish my mom wouldn't look at it like I'm holding my daughter back from doing things other kids do but that I realize what level she is at and that I do things with her according to her level and not age.  It doesn't mean that I'm hindering her learning.  I try to get my daughter out of the house everyday.  I take her to playgroups and she has tons of therapy.  I guess she won't understand because she lives 3 hours away and doesn't see my work on a daily basis. 

Creating a Will

We put a deadline on ourselves to create a will.  It's the end of the month.  Olivia's insurance company told us that it needed to be done.  We just have so many issues with this.  My family doesn't live in the area so that leaves Drew's sister.  Wow one person.  We have to have back up plans for back up plans for this will.  Drew doesn't want to get non-relatives to take care of Olivia and I don't see how that's feasible.  We need back ups!  It's hard knowing that Olivia might need life-long care, so it is hard to ask people if they would want to be part of the will.  Taking care of Liv entitles lots of appointments between doctors and therapists.  It's a lot to ask a family to do.  I do not think my daughter is a burden, but I could see how she would be to a family that is not hers.  This is very stressful!!!  So pray for us in being able to find solutions to this problem.

Thanks

I wanted to thank all of my readers.  I have reached past 1000 hits!  It's so exciting to know that there are so many of you that find my life interesting enough to read about!

Thanks so much!

The Bug is Finally Gone

Well she had the bug until yesterday.  We had to cancel all plans from Tuesday evening til Friday.  She didn't get to work with therapist.  She didn't get to go to the mall to practice walking.  She didn't get to go to play group.  This upcoming week we will only be here Monday and Tuesday because we will be visiting my family for three days.  She won't get a lot of practice in while we are there.  I don't have a lot of time left to practice with her since we start back at work September 1st.  It's nice taking her to the mall when there's nobody there for her to have lots of room to walk around.  I am going to miss this extra time I have been able to give to her.  Tomorrow is a GI appointment and she lost 1.5 lbs due to being sick.  I know they aren't going to reduce her feedings because of that.  I was really hoping to reduce the daily feedings so she would get hungry and eat food, but I obviously want what's best for her.

My Anniversary

We have learned that anything planned can be altered in a second depending on Olivia.  Tuesday is the day that she goes to daycare and it's our anniversary.  Of course we thought this would be a great time to go out for a nice lunch baby free.  The nurse wakes me up at 5 am to a crib and baby full of poop.  After clean-up, I put her in my bed to go back to sleep.  She threw up all over.  So her dad took her downstairs while I showered, put everything in the wash and remake our beds.  Then Liv got a bath (she smelled so bad!).  Luckily the daycare said they would still take her since it wasn't happening frequently.  So we dropped her off and went to lunch.  At least we were still able to go.  It's hard making plans with a child that can change your direction at the drop of a dime.