Those Random Fevers

Well there's been a lot going on.  I found out the random fevers were caused by pnemonia.  We tried to treat her at home, but we could only do it for a day.  She was admitted into the hospital on Thursday.  While here, they discovered a second pneumonia.  She does well for part of the day.  She is off the IV and is getting fed pedialyte through the gtube.  We tried her normal pediasure but there were complications with that feeding last night.  She started throwing up mucus and spiked a high fever.  They thought she was getting better and that we would go home today but then last night changed their minds, and mine.  I can't take her home and take care of her.  That's a hard thing to say as a parent, that you can't care for your child.  But reality is, we haven't been able to.  That's why we have nurses throughout the evening.  It's hard seeing her so sick but it is easier than watching her have seizures.  I feel like I'm in prision.  I can't leave the room unless someone is here to watch her.  My eating schedule revolves around that.  The weekends are easier because Drew can come here and we rotating eating shifts.  All Liv has gotten to do is sit on a bed.  I'm taking another week off work to be with her, even if we do go home.  I'm missing freedom!

Weird and Sporadic Fevers

For the past 2 weeks Liv spikes fevers of 102 at completely random times.  No symptoms of being sick.  She did great all weekend long.  It was the first time in a month that she was finally back to her old self and then bam - she gets a fever this morning.  I'm taking her to the doctors today.  Hopefully they can figure out why there's no rhyme or reason to these fevers.

Epilepsy Walk

The walk was not was I was expecting.  It was great to see so many people and sponsers and good vibes, however, I was not having good vibes.  Being there made me cry.  Everyone is so happy and supportive to the ones they came with.  I only saw 2 children younger than Liv that had epilepsy.  I didn't get any connections like I had hoped.  When I talk about my daughter's complications, it makes me cry.  Maybe someday I will get past that.  Everyone was in such good moods like they don't have a complication.  I understand you need to embrace it, but it doesn't mean that it's not scary and that it's easy to live with.  So as we are walking (and Liv is sleeping), I saw a family that had shirts on that said "in loving memory" and had a picture of a girl that was about 5.  That really made the tears flow.  I mean they lost their child and are still there walking to support.  What's even weirder to me is that they were in good spirits too.  Why am I the only one so upset?  Most people had large support teams there with her and we only had the three of us.  It was sad.  I'm glad we raised about 800 dollars though.

Epilepsy Walk Day 1

We are headed to DC now. Of course there's traffic, but Liv's asleep so that's helpful. It's exciting to get away. I can't wait to see the hotel. It's right downtown and next to everything. Hoping for a good time!

So Much Happening

I haven't written in a while due to Olivia being sick.  She consumed most of our time.  She had adnovirus and a uti.  This causes an outbreak of seizures.  She went 7 months without seizing and we forgot what it was like to be where we are now.  She started seizing before she got a fever, so my husband took her to the ER (while I worked) to find out what is going on.  They put her on back up meds for 3 days and said that she should feel better then.  She started seizing again when the 3 days were up.  She was put back on the med for another 3 days.  She started seizing when those 3 days were up again.  Ok so now we are on week 2 of the sickness and she is seizing.  I call the doctor and they said put her on the meds again.  The next morning, even the meds couldn't stop the seizing.  We had to give her Diastat too.  She still kept on seizing.  I had to rush her to the ER, but of course I had to stop and get gas.  It's raining and my daughter was seizing in her car seat while I'm getting gas.  I get her to the hospital and she starts seizing after I said her name to check her in.  They sound alarms and rush her into the trauma room.  There were about 10 people trying to get her to come out of the seizure.  It was nerve racking.  They stabilized her and took into a regular ER room.  She started to act fine.  They they gave her meds to keep her from seizing.  About 10 minutes later, she was seizing about every 3 minutes.  It was really hard to watch.  That went on for about 2 or 3 hours.  Finally they controlled them enough to get us admitted and into a room.  The neuro beds were full so we stayed in cardio.  That night she seized several times before going to bed.  The next day she only seized a couple of times before nap and bed.  The next day we got to go home.  She is on a second med to control the seizures.  I just hope this works.  We've been down this road before and experienced allergies and seizures.  In the past 3 weeks, that child has had so many seizures, I couldn't even begin to count how many.  At least a hundred.  We are home and Olivia is doing so much better.  She hasn't had a seizure since last week.  I'm sorry if this is confusing, but the whole 3 weeks were a blur.  I'm just happy everything is back to the way it was.

Shoe Update

We heard that Stride Rite had shoes that fit over MAFOS so we decided to go there.  We talked to the lady and she knew exactly what we were talking about.  This was a first for us.  She even taught us the trick of taking the inside support padding out to create more space.  We actually bought 3 pairs of shoes and they fit without jamming her foot until she cries.  What a relief.  Pics will follow after she gets over the sickness.

Rough Times

It's been 7 months since Liv has had a seizure, but she has several on Monday.  Drew took her to the ER and they found a fever that triggered it.  It's been so long since that happened.  She has had many fevers since the last seizure and there wasn't an issue.  Her sickness is scaring me.  She's so loopy and out of it.  We can't take her off of Tylenol because she has a fever on it.  She missed 3 days of school and she's going to miss daycare tomorrow.  Drew is going to take her to the doctors in the morning.  It's been hard going to school while my husband stays home with her.  When there's quiet time, I feel like crying and sometimes I do.  I'm used to being home with her when he works, but now I know what he goes through.  My poor little peanut, get well soon!

Shoe Frustration

Buying shoes to fit over braces seems like an impossible task.  We have spent many hours doing this every time she needs new ones.  She recently got new braces and now her sneakers don't really fit anymore.  So we will be looking tomorrow at the mall.  It's not fun trying to jam her foot into many shoes and still come out empty handed.  We are realizing that you have to buy them about 2 sizes too big.  I have searched it on the web and found so ideas that other moms have mentioned.  I have ordered 2 kinds of sneakers and had to send them both back.  I'm hoping for more luck tomorrow.  This is so frustrating.  And she never gets to wear cute shoes, only sneakers.  I wish I could just buy her really cute shoes and forget it, but I know it's not the best idea for her development.  Ugh!

Neurology Appointment

Yesterday Liv had her 3 month neuro appointment.  Her meds are staying the same because she hasn't seized in 7 months.  The doctor is pleased with her developmental progress.  She believes that Liv will be able to talk in sentences, which is amazing.  So I have hope in that.  We asked if she would consider Olivia to be MR and she said that she will be diagnosed when she is getting tested to go into elementary school.  She said that she will probably be labeled MR but mild to moderate.  She said her issues with epilepsy will probably help her getting into a school more suitable for her and not a public school.  She doesn't think a public school will be able to accommodate to her epilepsy.  This will be helpful.  Here's for working hard for the next two years before kindergarten.

Liv's First Lollipop

We haven't ever given Liv a lollipop before, not really sure why.  The stick is small but she could still grasp it, which is exciting since she doesn't have good control over her hands.  She was confused at first.  She couldn't understand why she couldn't bite it, but once she tasted it, she kept putting it in her mouth.  So cute!

Pink Eye

We noticed that Liv had pink eye on Tuesday night, so I knew I had to stay home with her on Wednesday.  We got her the eye drops.  We have noticed that for about a week, she has been waking up at 3 am and not going back to sleep.  She isn't fussy but just ready to start the day.  She's getting her ears checked today to see if it's an ear infection.  I am really hoping it is because I don't know how much longer we can do this.  I don't know what it could be if it's not or how we would even find out.  She looks healthy.  Hoping for a good nights sleep tonight.

1st Week of Pre-School

It breaks my heart to know that Liv cries when my husband drops her off at school.  She usually runs from him when she goes to daycare.  I know it will just take some time for her to get comfortable with it, but it still hurts.  I hope she is learning new things and I hope that she will start to enjoy it.  She is usually ok when they start getting her involved in activities.  I know she needs to be in school because she is 2 years behind and is only 3.  I'm just praying that she is having a good day!

Livy is in Pre-School

Liv had her first day of school on Wednesday.  I was very nervous since she isn't used to structured learning.  I took her and she was pretty shy at first.  I stayed for about a half hour and went over everything with her teacher.  Then I went to go speak to the nurse and spend a lot of time signing papers about her health care plans.  I went to go back to her room but she was eating breakfast and not crying, so I left.  I missed her and was hoping for the best.  When I got there to pick her up, she was eating lunch.  The lady feeding her has a talent.  She got Liv to eat a large amount for her.  I was shocked.  She was excited to see me and was ready to go home, but she didn't cry and she participated with the group.  I think she will do great once she starts to get to know the kids.  She will go 3 days a week.  I can't believe my baby is 3 and in school.  Time just goes to fast!

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.