More than half way there

Phew...last night and this morning were challenging.  Lilly stayed up until 1am.  Midnight was the goal but we were in the middle of Beauty and the Beast, no matter that we have seen in hundreds of times before, we had to finish it.  The wake up call came at 6am.  yikes.  Several leads came loose in the night so we had to go back to the room to get them reattached.  She was not as angelic as Wednesday but still pretty darn good.

You can see how some leads and the "hat" came off.

I had to cut her a lot of slack today, but honestly, I was amazed at how well behaved she was.  I was going to have a grandma or two come for a visit, but she had such a difficult time when Vinnie had to leave that I decided against it.  Even after dinner she said to me, "I keep calling for my Daddy but he's not coming.  I miss him so much."

Still smiling at dinner time!  

After some testing that involved flashing lights and blowing a pinwheel, she was able to nap.  We both napped.  For 3 hours.  It was glorious!  The playroom was open today so we went in there a lot.  We met the family across the hall and wished we had met them last night!  Their little girl is 10 years old and was so sweet playing with Lilly.  They have been through this a few times, though not since she was 3 years old.  Before they went to bed they actually colored together in the hallway and had sticker fun!  Plus the mom has been there done that and was gracious about sharing her experiences with me.  She uses the same doctor and had wonderful things to say about him.

Lilly loved putting her Piglet in the baby equipment.  :)

I think the long nap may have backfired a bit in that she stayed up way past her bedtime again.  Hopefully we can sleep later then 6am.  Tomorrow she gets to have all the leads and her special hat removed and then she has a sedated MRI scheduled for 11am.  I think by then we will both be anxious to get back to our home and routines.

Thank you for all your comments, texts and emails.  It has really boosted my spirits while I am here!

oh my...weeks past and ahead

I have been remiss in my blogging absenteeism.  I wish I had a better excuse like, I was on an exotic island with no wifi, but I don't.  I was more than a little overwhelmed with some stuff going on and just could not write about it yet.  And because I could not write about the main thing going on, I could not write about anything.

As I have blogged about many times before, Lilly has had febrile seizures from the time she was 15 months old.  For those who don't know what that means, febrile seizures are generally harmless and caused by the fever, either how fast it is rising or falling.  They are not neurologically involved.  Children outgrow them by 5-6 years old.

Most children have 1 or 2.  Lilly has had over 12.  I have lost count.  They have all been at very low temperatures, like 100.5 or 101.  Barely a fever, really.  The frequency had slowed down, so we were hopeful that she was outgrowing them already.  The last one was Memorial Day weekend after she had a vaccine booster that Friday.  For Lilly vaccine = fever = seizure.  I should have known that she needed constant ibuprofen.  Advil is our friend.

And then she had a different kind of seizure.  Last month, before Halloween actually, she was with my mom at a friend's house when she had a 10+ minute seizure.  With no fever.  :(  The ER doctor told me that he had never heard of a child having so many febrile seizures without being medicated.  He also made it clear that this was NOT a febrile seizure.  Time to go for another neurologist visit.

I decided to switch neuros at this time.  I won't get into all the details because, while they are important to me, it is a long and involved story.  Suffice it to say I did not feel fully comfortable with the last one.  I did not realize how uncomfortable I was until I met the new one.  I LOVE HIM!!  Lilly loved him.  That or she loved the toys in his office and the lollipop he gave her after his exam.

He recommended that she have the 48-hour video EEG (which is done in a hospital) as soon as possible.  The main concern, are her seizures caused by the fever OR are the fevers caused by the seizure, he brought up to me before I said anything and is the EXACT question I asked the last neurologist more than once.  That alone felt like he was the right doctor for us.  Lilly had the 20 minute EEG (sedated) almost 2 years ago.  The insurance company wants that one repeated before they will pay for the 48 hour.  The doctor called them and argued his case.  I am awaiting the decision.

We were supposed to go into the hospital last week but due to the insurance SNAFU we were rescheduled for this week.  I am hoping that we are in.  I just want the answers.  Knowing is hard.  Not knowing is harder.  Last week I was a ball of nerves and could barely be nice to anyone.  When the testing was cancelled at the very last minute the evening before I realized I just had to let it go.  I had worried about it all weekend, through Thanksgiving.  Well that got me nowhere fast.  I could not worry like I had for another whole week.

I received a confirmation call from the hospital this evening confirming Lilly's appointment.  I am hoping that is a positive sign.  I know that Lilly will do great.  Me, I am probably questionable!  lol

Please keep us in your prayers and thoughts in the next few days. xoxo

T-Day...warning...long post!

Sorry this took so long to put up.  I wrote it in stages.

So today (6/25) was testing day for Lilly.  Last night when I was speaking to the doctors it became apparent that she might not have the testing because of the cold/ear infection she has.  She has been on antibiotics since Tuesday so I was hopeful that it had cleared up enough for today.  They said I should plan as if we were going forward and they would check her in the morning.

Last night was difficult because she could not eat or drink anything but water or apple juice and then nothing after 6am.  I generally don't nurse her too much at night anymore.  She usually sleeps until 6ish so I nurse her then.  Of course last night she was screaming for about an hour to nurse starting at 4:00am.  She finally fell back asleep and I got to sleep for about an hour.

The one nice thing about driving to the hospital at 6am is that while driving through the reservation I saw a great blue heron.  I have always been fascinated by them and so seeing him (or her) gave me a sense of calm.

At the hospital Lilly was the belle of the waiting room.  She was talking to everyone, reading her books to me and dressing and undressing her baby too many times to count.  She went right in and even plopped on the bed on her belly to watch the nurse write down my answers to the questions.  She put the hospital-issued socks on her hands and made puppets and waved hi to everyone who walked by.  Of course as she saw the beverage cart roll by she started asking for applesauce and juice and pancakes and...you get the picture.

The anesthilogist was really great and determined that she was okay to be sedated.  At this point I was relieved because I did not want to have to do this all over again next week.  When the nurse was asking me if she went on the potty because they needed a urine sample Lilly said that she wanted to go on the potty.  Sure enough she went right on the little urine catcher they put on the toilet for her.  I was afraid she would not have enough urine because she had not had a drink since 8pm the previous night.

When it came time, I carried Lilly to the MRI room.  That was where it turned terrible as I had to hold her hands down while they put the mask over her face and she was sedated.  Then I had to go out and wait.  The MRI was completed in less than the allotted 45 minutes.  I then followed behind her as she was wheeled to the EEG room.  That took longer than I had expected but everything went well.  The nurse came to get me and she said that Lilly was asking for Mommy.  When I walked into the room she tried to get up but fell right back down.  She started laughing at herself and she was so loopy.  She could not even hold her head up for several minutes.  We walked back to recovery and after a few minutes Lilly was able to eat some crackers and drink apple juice.  She was desperately trying to befriend the baby in the crib next to us.  He was not as interested, poor bunny.

It takes about 24 hours for the sedation stuff to be out of her system so we had about a day of clumsiness and crankiness.  All in all she did really well, though.  She did not vomit or anything.  She did start to run a lowgrade (99.5) fever so we started the Motrin routine.  We have an appointment to see the neurologist in mid-July to get the results.  Meanwhile, if something big came up they would call us ASAP.  I am assuming that for now, no news is good news.  


So if you made it to the end, thank you for reading.  I wanted to give everyone as much information as I could but it was also good for me, mentally, to get this out of my head and onto "paper."