Her Party

Liv's party went really well.  It was great to be surrounded by people that we know love Olivia and accept her for who she is.  I love watching her interact with all of her friends.  None of her friends leave her out because she can't do as much as them.  I also love all of our friends because they clean up after themselves to the point that there was hardly anything for me to do.  Thanks so much everyone.

My New Therapist

I did go to a therapy appointment to help with the stress.  I found a therapist that is 2 minutes from my house.  It's great to find someone so close.  But even better, I really like her.  She reminds me of my old therapist that I really liked and she helped me a lot.  I just feel like this is going to be a good fit.  She really seems interested in everything I say (yes I know she is paid to).  I left feeling like I had some hope again.  She gave me strength in just an hour.  I am going to see her next week.  I think this is just the thing I needed! 

Tomorrow is Liv's party, I better be ready for a bunch of toddlers in my house!

Every Day Stress

The stress is building up and I'm struggling to handle it.  Funny thing is that I handle Liv's health problems better than I do stress.  I feel overwhelmed with keeping the house clean, work, Liv's party Saturday, expenses, and finding enough time to please everyone.  I sometimes feel like Liv is the only one that shows appreciation and she can't even talk. It's just this on going cycle that every so often it gets to me and I have an anxiety attack.  I'm going to go to a therapist tomorrow.  I hope that I like her so I can take care of myself.  I know that if I don't, Liv won't have me being able to help her. 

Today Liv has gone 6 months without seizures!

A Day Off

Today we had off work, but we had Livy go to daycare.  She does so much better when she has a routine to follow.  Plus she has therapies that she gets there, so she needs to go as often as possible.  It feels weird being home without her.  My husband and I went to the movies, which we haven't done since she was born.  It's nice to get a break, but I miss her terribly.  There's another day in February that I think she will be able to go to daycare and give us a day off.  It's definitely a bittersweet situation.  At least I get to go pick her up soon!

Potpourri

1. July 18th was Liv's last seizure, so we are almost at the 6 month mark with no seizures.  6 months was the longest we've made it before.

2. We ordered Liv a preschool backpack and lunch box with her name on them and they are so adorable.  I can't believe she starts school in 3 weeks!

3. Livy is having her 3rd birthday party next weekend.  I'm so excited that she's really turning into a little girl instead of still being in baby stage (aside from her development).

4. Since we got her hair cut, it is so much easier to manage.  I can actually get a brush through it.

5. She was self-feeding pieces of bread last night.  She throws a lot of it on the floor, but it's great to see her trying to take care of herself.

6. She has really been practicing walking and pulling to a stand.  She realizes that this will help with her independence and she works so hard at it.

7. She has a GI appointment at the end of the month so we will see if her feeding schedule will change since she lost a pound.

I'm really looking forward to the weekend so I can spend time with her.  I miss her since I'm sitting here writing about her.  I usually try to put her out of my head while I'm work, but it's not working today.

Liv's First Haircut

I took Liv to my salon to get her hair cut. I had no idea if it was going to work out or not but her hair was getting even harder to manage. She screamed bloody murder getting her hair conditioned. It had to get done or they never would have gotten a comb through it. After that, it was smooth sailing. She loved watching in the mirror. Her hair looks so cute and easier to take care of. Yay!

ENT Appointment

Liv had an ENT appointment yesterday.  It was just a 6 month check up.  She had a lot of wax in her ears so he had to get it out to look at her tube.  She went into the silent scream.  I didn't really think that what he did was any big deal but this morning she woke up with blood in her ear.  It's a little scary seeing that.  Well it definitely explains the crying.  We don't have to go back for another 6 months.  I've been doing specialist appointments with Liv since she was 6 months old.  I know how all of this works with referrals and whatnot.  The secretary was telling me that I would need one for the next appointment.  I should have just said ok and walked away but I didn't.  I told her that since she has Personal Choice, she doesn't need a referral.  The secretary was saying that since she has Keystone Mercy as an insurance as well, she needs a referral and that she is not going to be held responsible if she can't be seen.  Ok lady, who was going to hold you responsible anyways?  I understand that she works with lots of people that are difficult because it's the public in Philadelphia, but I think I have an idea since I've been doing it for over 2 years.  I don't understand why people feel the need to argue.  After she said that I of course just dropped and didn't say anything else, even though she was mumbling things like she was irritated with me that I wouldn't listen.  Oh well.

Epilepsy Walk

We are going to DC this year for the Epilepsy Walk.  Please donate even $5.  It will add up in the end.  Every year we raise about $700 and I hope to do the same this year.  It's not until March 31st, so you have time.

Olivia's Donation Page

Relying on Others

As you know, Liv has nurses that watch her every night.  Tomorrow is New Year's Eve and I was supposed to go watch my husband play at a restaurant.  The only reason he took this gig was because I could go and we could be together.  Well her nurse called out.  She's going out of state to be with family.  I really try to have relationships with the nurses.  There has to be trust and a bond in order to help Liv.  I just don't understand why she couldn't have talked to me about it and we could have made arrangements or Drew would have not agreed to play.  But since she waited until today, only a nurse that has never been here before can come.  This means I can't go out because they don't know Liv and she doesn't know them.  Imagine waking to a stranger and your parents are anywhere in sight.  She already gets stressed when I just go to the bathroom or get a drink.  So we told the company that we didn't want her as a nurse anymore.  She called me to talk it through but I can't rely on her now.  I mean it's not like she just found out about the trip today.  She could have talked to me last Saturday or something.  I hate dismissing a nurse that we've had for 6 months, but I lost trust.  So my NYE is me, a nurse I never met and Liv sleeping. 

Getting Closer

Last night Liv was standing for a minute, several times.  She even took about 7 steps without falling.  She was so proud of herself.  She was clapping and squealing.  She didn't even have her braces on.  It's so exciting to see progress. 

She also started putting fake phones up to her ear and saying hello.  She pulled herself to a stand at her kitchen yesterday.  She's been blowing kissing and trying to do real kisses on my cheek.  She's been more vocal.  She really wants to talk.  She's looking like such a big girl all of the sudden.  I wonder if it's due to the big girl bed. LOL

Vacationing with a Special Needs Toddler

This week we went to the Poconos for a mini-vacation.  We were hoping to be there for 4 days and ended up leaving early.  I was hoping for snow to let Livy play in it, but no such luck.  We had rain instead.  The first night I went to the outlets and got to leave Liv behind.  The next day we went to an indoor water park that was crowded, of course it was due to the rain.  When you go to a place like that with a child that can't walk, it can get frustrating.  The kids just run through the water and splash her, which she doesn't like.  She didn't mind the wave pool.  That's where we spent most of the time.  I can only take the water for so long.  It would be one thing if Liv could go down some slides or sit in the water herself, but she can't.  It's like having an infant at a water park.  Water parks used to be my favorite thing, but I have lost interest.  Then we went to dinner and Liv wanted to throw all of her toys on the floor repeatedly.  I got fed up.  I can only pick up the darn things so many times.  It's not like this is different than any other time we go out to eat, but I envision vacation as having a chance to breath.  I was so fed up that we decided to cut the trip short and just go home.  I felt better when we got home and everything was familiar.  I'm hoping that someday vacationing will be easier.  We are supposed to go to Martha's Vineyard this summer with family, but I'm not sure if I can do it.  It will be 7 hours away, which means cutting the trip short will be harder.  Plus we never been in the car longer than 3 hours with her.  It's stressing me out and we aren't even close to going yet.  Maybe I'll just have to pass.

Big Girl Bed Night 2

Last night was awful.  Liv fell asleep in the car an hour early.  She woke up at 10:30 and wouldn't go back to sleep.  I spent a lot of the night laying in her bed trying to get her to sleep.  She woke up at 5:30 am so I crawled back into her bed and she slept off and on until 7:30.  I'm hoping for a better night tonight.  We have a big day tomorrow and I need my energy. 

Big Girl Bed Night 1

We put together Liv's new bed last night.  She looks so tiny in a big bed.  Her doctor said she needs to go to sleep without us holding her and that might help her sleep through the night.  So we figured we would put together a twin bed and do the new routine with a new bed.  The nurse said she woke up twice but just to look for her binky.  My husband is worried that she is going to fall off.  Of course it's against the wall and we have a bed rail on the other side, but there's still a gap.  Everything was fine last night so I guess we will just continue to see how she does.  She doesn't understand that if she leans off of the bed or couch, that she will fall off.  I hope she continues to do well with it.

Self Feeding

Livy was doing it again yesterday.  She was feeding herself Cheerios.  She hasn't be able to do this before because of their size.  She still rakes and has trouble getting them in, but she was doing it.  This is so exciting.  She's not ready to do it all the time though.  I tried it with a french fry for dinner last night and she just wanted me to do it.  I guess we have to start somewhere and we will get to full self-feeding one day.  She does not like to touch soft and slimy things, so that will be awhile before she self-feeds fruits and some vegetables.  At least we are on the right path!

Developmental Appointment

Today we went to the Developmental Pediatrician for the first time.  It was a long appointment and we didn't get as many answers as we were hoping for.  I guess we didn't really get much at all.  She has to go back every 6 months, so now that's another doctor to add to the list.  She told us that Liv is about an 8-10 month old developomentally all around.  Kinda hard to take when she will be 3 next month.  She has a full write up that she will mail to us and it will have her IQ score on it.  She was also concerned about the way Liv walks, so she gave us a recommendation to have that progress looked at, which means another doctor.  I guess I'll call tomorrow and book that appointment.  Liv just had no interest in the toys that were presented to her.  It gets frustrating when you know she can do something but won't for others to see.  Oh well.  Everyone there loved her because charm was on full blast as usual.  She gave us some tips for getting her to sleep through the night, but I guess if she's not mentally considered to be 1, she might not sleep through the night until she is.  We will get her big girl bed set up this week and I'm hoping that will help.  I guess sometimes we hope someone can look into the future for us, but that's never going to happen.  Again we were told that they have never seen the combination of the two disorders together which makes it even harder to tell what the future holds.  As long as she stays the snuggly, sweet girl that she is, she will be just fine.

Visitors from Across the World

Liv's Aunt Polly and Uncle Tony are coming to visit from Africa.  They haven't seen Livy for 2 years.  I can't wait for them to see her.  They have been keeping up with her by reading the blog and looking at pictures through Shutterfly.  They will be at our house on Saturday, which is great because she really acts herself when she is here.  They will also get to see her on Christmas.  She's going to be great this year because she's really into ripping paper and toys.  This will seem like the first time she is understanding what's going on.  It's great they will get to see her reactions to presents.  Can't wait to see you guys!

Endocrinology Appointment

Today Liv had her appointment.  They said her growth is normal for a girl her age, however she is only in the 1 percentile.  She is on the 50% for the Turner's chart.  That's great!  They said she probably won't need growth hormones until 5.  At least that's one less worry for now.  We did get scripts to check her thyroid levels.  She has to get her Topamax level read from Neurology, so we will get them done next week at the same time.  They are happy with how well she is doing.  She isn't really showing signs of Turner's.  No heart problems, no kidney problems, no webbed neck.  I'm hoping for good test results!

Neurology Appointment

The appointment went well today.  She hasn't had seizures since her last appointment, so they didn't change the meds.  We thought she might have to have an EEG, but since she is doing well, we got to skip it today.  We go everything 3 weeks and they were surprised to see how much she is doing.  When we went in August, Liv only had her walker for a month so we didn't take it out with us yet.  Now she walks around the hospital until she is too exhausted.  Of course she makes everyone look at her and tell her how cute she is.  Yay for a good appointment.  Next one is in 3 months.

Endocrinology appointment tomorrow with updates following.

Home Sick

Liv had a fever last night and still had one this morning.  It was obvious that I was going to keep her home today.  She was fussy and kept calling for daddy while he was getting ready.  (yes I'm jealous that she can say daddy and not mommy)  I brought her downstairs and put on Mickey Mouse to have her relax.  She saw Drew put on his coat so she grabbed a toy and wanted him to pick her up.  That's what she does when she leaves for daycare.  She thought she was going to school today.  It was so sad.  She was so upset and cried for about 15 minutes after he left.  It's amazing that she thinks she should go to daycare even though she feels like crap.  Her determination is the most beautiful thing to witness.  She has more strength than I will ever know.

So Funny I Almost Peed

My daughter was sitting with me on the couch eating popcorn.  I was breaking it up and feeding it to her.  She kept reaching into the bag so I figured how bad could it be if I let her feed herself.  She did it!  She picked it up and put it in her mouth all by herself.  She did it over and over.  It was so exciting that my eyes teared up.  Liv is almost 3 and we have had to feed her everything as if she is 8 months old.  This is a huge milestone for her.  While I'm marveling in this amazement of my child, she decided to pick up the bag and put it on her head, and yes the popcorn was still in it.