Finally, the follow-up

Thank you all for your prayers and positive thoughts as we awaited the results of all of Lilly's tests.  It has been a challenge to even get an appointment with the doctor.  As it is, I had to reschedule a court date, so I will need to take a day from work anyway.  grr....but I digress.

Without further ado, the tests only showed one "unusual activity" period of 2 seconds in the whole 48 hours.  This could be nothing or it could be the beginning of a seizure disorder.  If she is going to have another seizure without a fever it will in all probability be in the next 6 months.  So we wait and see.  We have a new prescription for diazepam to be administered if she has a seizure longer than 5 minutes.  She will have it with her at all times.

I think that this was probably the best of all answers.  There were not many episodes that would indicate that she has epilepsy.  I definitely feel that it was worth my time and effort and her discomfort in having the testing done.  I trust the doctor implicitly, which I cannot say about the last neurologist.  I know from talking to him and to the other mom I met that he is aggressive in both testing and treatment.  So if he does not think that Lilly needs medication right now, I am confident in that decision.

Thank you again for all your kind thoughts and notes.  It has been a challenging time for my family as my Nanny is in her final stages of her life.  I am praying for a peaceful passage for her into the next life.

And we're home!

One of my favorite pictures of our time there.
She was cheery even after 44 hours of monitoring.

It feels so good to be back in our home! Lilly is so happy to be in her own bed with no wires attached to her tonight.  I bet she will sleep well tonight.  I hope she does so that I do too!

Today was actually more difficult than I had anticipated, and maybe that is just as well.  I had planned on trying to comb out the glue at home, but because Lilly was having the MRI they wanted as much out as possible beforehand.  I caught Vinnie right before he left the house so he was able to bring me conditioner.  I used 2 1/2 bottles and I did not even get it all out.  I just hope that Lilly never gets lice because I would imagine combing all that glue out would be kind of like combing nits out.  But I digressed.

Then we had to take her down for the sedated MRI.  She was enjoying the ride down in the special crib.  :)  This time I didn't have to hold her down, they just took her from us into the MRI room.  In less time then they had allowed, she was finished.  She was hysterically crying and trying to rip her IV out in recovery so they let us go up to her room.  She was the last patient so we had 2 nurses to ourselves!  All the nurses we had were great.  Lilly managed to charm each and every one.

Keeping busy while we waited for the conditioner.  

Eventually we got her to eat some crackers and drink some water and from there she ate lunch and we were able to leave.  She seemed to perk right up once we were on our way home and really perked up once got home.  She was still a bit wobbly for most of the day so I put some movies on, made popcorn and hot chocolate and we relaxed.

Thank you to all those who have sent me messages, texts, written comments and called.  It means so much to all of us to know that all these prayers and positive thoughts are out there in the universe for our Lilly Bernadette.

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!

48 hour video EEG testing

We are in the pediatric neurology center!  I am so grateful to our doctor who advocated to the insurance company for Lilly.  We saw him this morning and he is very glad that Lilly is here so we can get some answers.  Lilly has been amazing so far, especially through the node application, which takes the better part of an hour.  See, she was even smiley right after!   

One of the hardest parts is that we found out about 7pm that Lilly has to stay up until after midnight.  They want her to have half the sleep she normally has.  The poor kid has been asking me to go to sleep.  Several times she has also said that she was ready to go home.  But overall she is in great spirits.  She has taken the cue from Vinnie and I about how much fin this adventure will be.  We are having treats and watching movies, coloring and playing with play-doh.  And this too will pass.  At least she was able to take a nap this afternoon!

Thank you for all the positive thoughts and prayers sent our way!!

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

New Daycare???

It is almost time for me to go back to work.  I start the day after Labor Day but I will start to get up earlier next week so that it is not too much of a shock.  Naturally, Lilly has started sleeping until 8-8:30am just in the past 2 weeks.  But what I am really thinking, worrying and obsessing about is where Lilly will go to daycare. 

She has been going to one daycare since she was 18 months old, when I became a working mom.  In that first year there were a few issues here and there, but we generally loved her teachers and all the other people she encountered at daycare.  After she was there a few months she had a seizure at daycare, bringing one of my worst fears to life.  They were amazing in their response - every single person from the teacher who was with her at the time to the director who went in the ambulance with her and stayed at the hospital with my husband until I was able to get there.  In many ways, I excused little things that bothered me because of their response to her seizure.  It always felt like a warm, welcoming place.  Even though I did not know all the teachers, they ALL knew Lilly.  And in the good way, not the Oh, it's Lilly way, but the Hi Lilly!!! way. 

Last September she moved up to a new class called Pre-k 1.  I balked a little at the thought of calling 2 year olds preschoolers, but that is what they called it.  From the beginning I had some issues with the change in how the teachers interacted with the children.  We went from cuddly, hugging teachers to much more detached teachers.  In fact, even though the daycare calls all of them teachers it felt like we went from caregivers to teachers.  The teachers were not cold and did give hugs, but were just so different than the downstairs waddler & toddler teachers.  (The exception being the most wonderful Ms. Gloria.  Yesterday Lilly was talking about Ms. Gloria and described her as the one who gave her hugs.)

I definitely had issues with the way that things were going in the pre-k 1 class because they were developmentally inappropriate.  As much as they tried to convince me it was okay, a 30 minute circle time is NOT appropriate for 2.5 year olds.  Making them sit on the rug for 20-30 minutes listening to book after book on tape as the teacher turns the pages, and yelling if they creep off the rug...also not appropriate.  The assistant, in particular was troubling and she and I butted heads several times.  The lead teacher in the room was nice, if not a bit blah and ignorant of developmentally appropriate practice (DAP).  And for those thinking that of course I know about DAP because I have my masters for goodness sakes?  It is actually officially organized by NAEYC (national association for the education of young children) which is for ALL early childhood facilities, even home-based ones.  I let go of a lot of little things (like dittos and cookie cutter art), but not the big ones (like time outs that were too long, and my daughter's arm being stuck and you did not even notice).  I was NOT the favorite parent. 

Anyway, all these things added up to us looking into a new daycare for this coming year. We pulled her out for the summer since I am home, but there is a waiting list for the upcoming year.  There is a new one opening not too far from us that would actually be easier for me to get to work from if need be.  (Since I take Rt. 22 to the Pulaski instead of Rt. 78.)  And theoretically, it sounds like a great place.  But don't they all, theoretically???  My real issue is her seizures.  Thinking about Lilly having a seizure at daycare makes my breath catch in my throat.  There is a comfort level for me in knowing that she has already had a seizure at her old daycare.  They know the drill, what to do.  The hospital that we use, when needed, is about 2 miles down the road.  All her info is there, many of the doctors and nurses have seen her before.  And at her old daycare they were great about checking her temperature at the slightest flushed cheeks or warm head or crankiness. 

In general, I am a bit of a control freak.  In particular, about my daughter, I am very much a control freak.  I think most moms are.  We know that we really don't have the control.  It is just an illusion that we can somehow control the world so that our child has the best possible outcomes in every situation.  I have no control overy Lilly having seizures.  But I can try to put her in the best possible daycare to meet all her needs, especailly if she does have one.