The weekend that wasn't

Sunday night.  What is it about Sunday night that feels so rushed?  Hectic?  Like I forgot to do something everything, over the weekend?  I tend to feel like that a lot during the school year and I definitely did the first week or so of camp.  But then we kind of settled into our routine.  I need to remember so much for Lilly and myself every single day that Sundays were no big deal.

And then Lilly got sick.

Thursday night she had a fever, but no accompanying seizure, and seemed perky and fine in the morning.  I wished she would have been able to stay home, but Vin was out all morning trying to take care of some car issues.  Since she was happy and the fever was not being what I like to call pervasive (creeping up between ibuprofen doses) I let her go to camp.  I brought her to get a temp check after nap and it was completely normal.  By the bus ride home a few hours later I knew it was back.  We are the first to be dropped off on our bus route, and I was thanking God for that on Friday.  As soon as her backpack was off I checked her temperature under her arm...100.9.  And you add 1 to 2 degrees for the armpit measure.  I gave her ibuprofen and gave her an ice pop as a snack.  About 15 minutes later she was sitting on the couch between Vin and I and the seizure hit.  I had been waiting for it to happen.  I just knew she was going to have one, as much as I was trying to prevent it.  It was a short one...3 minutes or so, but it really took a lot out of her.  And me.

I am sure I don't need to say it but I will.  My weekend was shot.  We obviously cancelled our trip down for my Godson's birthday party.  I was as much concerned for Lilly as I was for my newborn niece and all the other children who would be in attendance.  Lilly was not herself all day.  The fever became the pervasive type where I had to piggyback the tylenol and advil.

Today she was a bit better but we were all tired.  I got some laundry and grocery shopping done.  But the laundry is in a basket, and will most likely remain there as we wear our camp clothes out of it each day.  I did not bring the camp groceries up to camp but I will have bags with me on the bus tomorrow.  I have lunch and breakfast stuff for Lilly and I for the week and dinner ingredients for a few days, at least.

And Lilly is okay.  As Dr. Mom my diagnosis is hand, foot, mouth.  I had heard that it was going around so I was not surprised when she told me that her mouth hurt this evening.  Sure enough she has the blisters in her mouth.  My poor bunny.  I am going to have Vin bring her to the doctor tomorrow just to confirm and rule out strep.  I never fool around with strep.  But as long as the advil is in her system she is peppy and twirling and dancing to her many movies and shows that she got to watch this weekend.

I am feeling rather like I want a weekend do-over.  Anyone else in with me?

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. 

A sigh of relief

We had the neurologist appointment to find out the results of all the studies that were done a few weeks ago.  Everything came back completely and wonderfully normal!  She has simple febrile seizures and we just have to stay on top of any rise in temperature, as little as it may be.  Thank you everyone for the thoughts, prayers and well wishes.

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."

catching-up

I have not written in what feels like ages because life has been a little hectic.  I have gone on 2 interviews: 1 for Early Intervention which I was offered on the spot and 1 for a position in Hoboken for the BOE.  More on that 2nd one later this week, I hope.  The Early Intervention position is hourly but functions more like a contract.  I can work around my schedule and have as many/few clients as I can handle.  This is something I have really wanted to do so I am thrilled by this opportunity.  I am hoping that I will be able to build a relationship with this company and then if/when we decide to expand our family it will allow me to stay home with #2 a little longer than I would otherwise be able.

In the midst of graduation, being let go, interviewing, etc. I was also dealing with Lilly getting sick.  Again.  It started off in her usual way...with a febrile seizure.  We brought her to the doctor and was told she had laryngitis/croup and to expect the barky cough to start that night.  Sure enough it started about midnight.  Well by day 2 of the cough and shortness of breath I was getting very concerned.  I had really been trying to be calm because I know so many people end up in the ER unnecessarily.  I called the doctor before I put her to bed Thursday (we had been to see him on Tuesday) and based on her symptoms he told us to go straight to the ER.  Now, I was thinking as we walked in that it was kind of sad and disconcerting that I was beginning to know many of the faces in the pediatric ER.  Lilly was seen ultra quickly and was given an oral dose of a strong steroid to calm her breathing.  It worked within the hour and we were on our way home.

By Saturday Lilly seemed to be on the mend.  Her temperature was back down in the 97s without ibuprofen and her cough was barely noticeable.  She had a slight runny nose, as expected.  Sunday morning I woke up to her having a febrile seizure in the bed next to me.  Vin and I got dressed and brought her to ER once again.  There seemed to be no infection and nothing else going on.  Back home we went but since it was Sunday of Memorial Day weekend I was glad we went.  Plus the ER doc told me that I should always bring her if I feel I need to, especially after a seizure.

I have an appointment for the diagnostic testing Lilly needs for the day after my last day of work.  i am not thrilled that she will be sedated for approximately 1.5 hours, but at least we will rule out any other causes of the seizures.

Meanwhile I have been trying to work out with the wii when I can.  I REALLY want to get back to the gym as well, but finding the time seems impossible.  And food, well, I have not lost and I am trying not to beat myself up for stress eating when Lilly was sick.  At least I know that when I am stress eating now it is still not nearly as bad as before.  Like I might have a doughnut.  Okay, 2 doughnuts.  But I am not eating doughnuts, cookies and 2nd helpings of dinner and maybe some ice cream after.

As an aside, Lilly has been obsessed with "ham" or Green Eggs and Ham by Dr. Seuss for the uninitiated.  I think Vinnie and I know that book by heart.  Her next fave is There is a Monster at the End of this Book.  She CRACKS up!!   To know Lilly really is to love her.  She just lights up my world.  Which reminds me...only 12 more work days until I am home with my bunny for the summer!!!

Febrile Seizures

My daughter Lilly had her 1st febrile seizure in August 2009.  It was scary, terrifying really.  We found out she had a urinary tract infection and then from there we found out she has some kidney reflux.  She did not have another seizure until about 8 weeks ago.

She was in school and I received the phone call first from Vinnie and then seconds later from the daycare that Lilly was having a seizure and was being brought via ambulance to the ER.  Receiving that phone call might have been the worst phone call I received to date.  Again we thought she had a UTI but the long term culture proved to be negative.  She was already being treated with antibiotics so she finished them.  Unfortunately by the time the culture came back it was too late to find what the true infection was.

Yesterday she woke up with a fever.  She was going to my mom's so I went to work and made sure she was motrin'd up.  My mom gave her the motrin at the next dosing time and about 30 minutes later she had a  seizure.  I took her to the pediatrician later that day.  She had a red throat but the strep test was negative.  Culture was sent out.  I got a urine sample from her this morning and brought it in to the doctor.  They are sending that out for a culture.  I guess there were some irregularities with it.  I am not exactly sure what that means, but it was very concentrated.  So at this point it is a waiting game to find out the source of an infection.  Of course it could just be viral....

Dr. Cotler also said it was time to see a neurologist.  When I called to make an appointment, the receptionist got us in for next Monday.  Her urgency in getting us in alarmed me.  It is very worrying that Lilly has these seizures and I want to make sure they are just febrile and not a seizure disorder.

So prayers and positive thoughts our way would be much appreciated friends!  And if anyone has any experience with multiple febrile seizures (not just a one-off) please share!

Big Day

There were 2 big things that happened today. I will start with the good news. I received a phone call today from New Brunswick letting me know that they were recommending me for a position. It was not the position for which I had interviewed, but still a great one. It may even be a better fit for me. I would be a member of the PIRT = preschool intervention & referral team. The members of the team help support the teachers in a variety of ways. The team is made up of 2 social workers, a LDTC and 2 part-time speech therapists. The position is for someone who will be out on leave for the entire school year. I am not worried about that right now. I know a lot of people who got their starts in districts that way. The catch is that HR has to offer the position. So it is not officially mine until I get that call from HR, which could be a few days from now. I had a really great conversation with the director of early childhood and she was excited for me to bring my perspective of INCLUSION to the PIRT. Cross your collective fingers that I get a call from HR!!

Unfortunately I received this call while I was in the ER with Lilly. She woke up for her early morning feeding (6amish) and I brought her into bed with us so I could nurse. I realized that she had stopped nursing so I went to put her back on and I realized immediately that she was in the throes of a seizure. I woke Vinnie and told him to call 911 while I held our baby girl. It was awful. Her lips were turing blue and she was twitching and limp all at the same time. Her eyes were rolling back in her head and had shallow breathing. We checker her temp and it was 101.5. She finally came out of it (but was very out of it) about a minute before the EMTs got to our house. It seemed like she was in it forever, or at least 5 minutes.

Vinnie went with Lilly in the rig while I got dressed and followed. The ER staff was very kind and was convinced that it was just a febrile seizure but wanted us to stay for a bit. She slept and nursed most of the morning. Our pediatrician wanted to rule out an UTI so we then had to wait for her to pee in the little bag they attached. After almost 2 hours of no pee they decided to catheterize and of course she peed. :) Thankfully there was no sign of infection anywhere. The best guess is a viral infection with just fever.

It was truly one of the longest days of our lives.