ENT

I'll begin by catching things up some.  When the sleep study results came back positive for Mild Chronic Obstructive Sleep Apnea, our pediatrician was hesitant to jump on the tonsil/adenoid surgery train.  She explained that if the apnea was caused by allergies, the adenoids would just grow back and the surgery would be pointless.  So, we went and had blood work done to test for the allergist.  It all came back negative though so we were then referred to an ENT.

Sophie and I visited Dr. Deitch today and he was wonderful with her.  I would say he's been the best pediatric specialist we've met yet.  He was right on her level, and she actually enjoyed the examination.  He came to the same conclusion all others have, her tonsils aren't huge (not small necessarily but also not huge), though the left is slightly larger that the right.  His advice is that we go ahead with the surgery in anticipation of her adenoids being huge and the cause of the apnea.  He did clarify that if they are found to be normal, which he doubts, they would not proceed with the surgery but he doesn't think it's worth spending the resources on an x-ray first.

He took the time to clarify that if she didn't have a seizure disorder he would recommend simply waiting and re-checking later to see if she just can outgrow the apnea, but due to the seizure complication it's better to go ahead and do the surgery.  There were various reasons for this which he explained very clearly but of course of which I retained very little.  He also pointed out that his recommendation follows the sleep doctors recommendation completely.

The surgery is done on a Monday, and she'll be out of school for a week.  I guess it's good we're taking care of it while she only has three days of school weekly.  We're thinking the Monday before Thanksgiving will be best since Joe and Sophie already have Thursday and Friday off.  I think we've decided I'll take Monday through Wednesday off instead of Thanksgiving and the day after.  In the end, I'll only spend one extra day of PTO and she can stay home where she's comfortable all week.  The bad news is that we were planning on heading to Eau Claire for Thanksgiving, which we haven't done in far too long, but luckily much of our family will be visiting us here the weekend before for my Consecration and I think we'll still travel to Eau Claire the next weekend once she's feeling better.

So, for now, I'll be working on Thanksgiving while cooking a small turkey in the crockpot, if that is possible. It may just go down as our worst Thanksgiving ever but we'll count our blessings and all that we're thankful for nonetheless.

Now, on to Halloween!

Results Are In...

I finally heard back from the Sleep Doctor on Friday.  I had been calling their office practically every day-- not necessarily to get the results of the sleep study in its fullness but more to see if there was any seizure activity recorded.  See, when we arrived for the sleep test I was thrilled that an EEG was part of it and have been anxiously awaiting the results of that portion of the test ever since.  The rest I hardly thought about, I figure that her snoring was from the chronic sinusitis which has since been controlled by 10 mgs. daily of Claritin.

Before I give the results, I'll fill you in on the test.  When I scheduled the test, I let them know that due to Sophie's school nurse's recommendation she is now going to be at 7:30 each night.  The earliest they do the tests is 8:30 so we kept her up extra late and she and I drove to the clinic in our jammies, teeth brushed, faces washed and ready to go.  (I also have to mention that on the drive there I received the most heart-warming voicemail that had been left earlier in the day from a member of my church, assuring me of her prayers and honoring how difficult our journey has been).  So, at long last we arrived to the clinic and were told it would take about an hour to get her ready.  They were right, at about 9:45 the nurse completed all the wiring, pasting, and gauze-wrapping as Sophie sat in a chair nodding off to sleep.  I knelt on the floor in front of her, assuring her it would only be moments, and preparing to catch her should she truly fall asleep.

As far as I knew, she only woke up once, calling out for me.  I slept in a room adjoined to her, just like two hotel rooms with a door between.  Her's full of cameras, computers, and wires; mine just full of, well, me...and my Kindle...oh, and the sleep number bed--I'm a 35.  Anyway, when she woke up the nurse came in with a flash light and allowed me in the room to calm her back to sleep.  Next thing I knew, a voice was coming through the speakers saying, "Sophie, time to wake up."  And we did.  After about 20 minutes what took forever to paste on to her was off and we were free to go.

So, six days later the doctor called.  The great news--No Seizure Activity noted!  She did clarify that it wasn't a full EEG, but from the areas of the brain that were monitored there were no Absence Seizures that night.  What a relief.  I had been so nervous that although we don't see them during the day anymore, she might still be having them at night!  The not-so-great-news--she has Mild Obstructive Sleep Apnea.  The sleep doctor stated that after we come in to go over the results more fully we'll be referred to an ENT.  She noted, "I'm not a surgeon, so I have to refer you to one."  I'm guess this translates to surgery being our next step.

I'm hopeful that this will only help Soph's mood.  It is one more step towards a good night of sleep for her.  One more time that we get to joyously travel through anesthesia with her--neither Joe nor I am looking forward to that experience again!  But in the end, we're getting closer.  At times I've been wondering if there might be some bigger picture we're missing with all these diagnoses, but I'm hopeful we're almost done.

Other Updates of Note:  The second opinion we got on her vision came out clear.  No glasses needed, her astigmatism is tiny and does not require corrective lenses.  She doesn't have to go back for 18 months!

Also, we had an appointment with the neurologist this past week and he is very pleased with her progress.  He believes all is going as planned and he's happy she's putting on weight.

I'll update again when we have a set plan regarding the Apnea.

Kindergarten--Week 4

Alright, so I've taken a few weeks off from typing and in the mean time, not enough has changed.  Buckle up, this is going to be a long update.

There are a number of issues that have arisen since the Epilepsy diagnosis.  We're still waiting on the sleep study (recommended by the Anesthesiologist who saw breath-holding during the MRI) which is on hold until her cough clears up.  Sophie's pediatrician is still trying to clear up her cough (which the sleep doctor said needs to be cleared before we can do the sleep study).  And the transition into Kindergarten has been challenging, to say the least.

For the cough, we've tried antibiotics (did nothing), an inhaler (seemed to work), zyrtec (made her super tired and caused a phone call from the school nurse suggesting we try Claritin which is non-drowsy), Claritin (seems to be allowing more energy and a better mood but since it seemed to be working the doctor suggested we wean the inhaler), and next is Singulair (since weaning off the inhaler has caused her cough to come back...today).  The irony of the cough returning is that I called the pediatrician today to tell her things are going well with weaning from the inhaler only to come home to gurgly (this is the best description I can come up with) breaths and wet coughs.  The irony squared is that I also scheduled her sleep study today thinking the cough was under control.  If we can keep the date, it's going to be next Saturday night.

On to the Kindergarten issue.  Sophie has a late summer birthday, July 22nd to be exact, and Joe and I waffled a lot about holding her back.  Unfortunately we got the Absence Seizure diagnosis after she was enrolled and pumped to start or we might have held her back recognizing that the seizures often cause a learning disability until diagnosed and she'd be starting not only much younger than many in the class but also behind academically--not to mention that she's very introverted (not a bad thing, but makes transitions difficult).  Because she was so pumped to start Kindergarten we went forward with it hoping the seizures would be controlled by the time it began but they weren't and the medicine has been hard on her.

The school/teacher has been great about accommodating her constant hunger which was the side-effect of the Depakote that the doctor warned us of when she began at 125 mg. Now that she's at 625 mg she has a constant need to eat and the teacher allows to sit at her table and snack whenever she needs to, but now her behavior has become a concern too.  She called yesterday and we talked for about 30 minutes about Sophie's needs as a student.  We had a very positive conversation and got on the same page about tactics for helping her thrive.

Feeling really good this morning after thoroughly covering all these things before school today, I can say it was less than pleasing to have the Principal call me this afternoon!  I knew after talking to the teacher that there had been a team meeting including Soph's teacher, her literacy teacher, the social worker, speech pathologist, and principal regarding Sophie's behaviors and needs but I did not expect the Principal to call.

The call was to let me know that 1) They're working hard to be pro-active with Soph and find solutions before anything becomes a problem.  That the communication is not a sign that things are going bad but that they're working hard to accommodate her special needs and learn how best to respond to her personality.  And that 2) Should we be thinking of pulling her from Kindergarten, they would hold her spot at the school-of-choice until next year.  (I may not have mentioned you have to win the public school lottery [literally fill out a five page application and then be picked out of a hat to be one of the lucky 22 out of hundreds of applications] to be accepted into her school).  She made it very clear that this is not their suggestion of what we should do, but that it had happened before where parents whose children had an "immature nature" felt they couldn't pull out of Kindergarten because they'd lose their spot.

So, here we are.  I wouldn't even say her seizures are completely gone, I think I saw one at dinner tonight.  And thanks to the Epilepsy we have many, many more problems to deal with.  This is never how I expected Kindergarten to go.  I just pray that in 6 months, I'll look back on all this knowing I made it through such a hard time with faith and trust.

And it Continues...

So, as if we haven't yet learned, Sophie had another doctor's appointment today which brought on tons of frustration and stress.  She had an appointment with a sleep specialist at 12:15 which was scheduled due to her breath holding during the MRI and snoring.  To start with, I thought it was at the wrong hospital but luckily caught it just as I was leaving work.  Then, we got there right on time but ended up waiting one and half hours for the doctor!  She didn't enter the room until 1:45--my stress level rose about every five minutes as we waited.  Next, she proceeded to diagnose Sophie with Chronic Sinusitis with a current sinus infection that she herself could do nothing for. Her orders were to follow up with our primary care pediatrician to get antibiotics for the infection and then schedule a sleep study for her probable "Sleep Apnea"!

After dropping Sophie back off at daycare, I called her PCP and they would not order the antibiotics without seeing her themselves so we made a  5:00 sick-child appointment ($60 copay) to get the antibiotics we already knew she needed...  In the end, despite my frustration, this turned out to be a good thing.  Her Oxygen sats were low (94% I guess from what Joe saw, he was with her, I was at work) and she had to do breathing treatments for about an hour before her numbers rose enough to go home. The pediatrician believes it is Bronchitis, put her on a strong antibiotic and said to follow up in a week.

Once the infection is clear, we'll schedule the sleep study.  I'm thinking we can make it fun because it's done in the building I work in, so I can play it up as spending the night at mommy's work!  What's more fun than that, right?!

So, what could have been one quick easy appointment turned into three hours in doctors offices for Sophie today!!

Joe did get some pictures of the breathing treatment, she was a champ through it all!

Max Dosage

Yesterday, on Sophie's first day of Kindergarten, I finally heard back from the doctor.  Her blood work was normal and we're upping her one dose at bedtime.  So, Monday after her first day of school we gave her three pills at the end of a very long day.  My daycare provider sent me a text today that she saw numerous seizures and that Sophie was very hungry!  Every time we've upped her dose, she's responded with ravenous hunger so I'm not really surprised just concerned about how it will affect her tomorrow.

Luckily, she fell right to sleep tonight, so hopefully she'll be well rested for Kindergarten tomorrow but she may still be hungry.  I emailed her teacher tonight to let her know that Soph's dose has gone up but in the mean time she may notice seizures and that she will notice Soph's hunger for sure.  So, I've packed: a pair of Swiss cake rolls, fruit snacks, a go-gurt, mandarin oranges, raisins, a turkey and cheese sandwich, a plum, a blueberry breakfast bar, and a danimals smoothie...hopefully she'll make it through the day.  We've talked about this with her teacher already so she is aware that Sophie may need extra snacks, hopefully her fellow class-mates are as okay with it as her teacher is.

Thanks for caring!

Where'd the rug go?

After a few wonderful weeks of Sophie being the girl she was a couple years ago again, over the past few days it's unfortunately changed.  Maybe Saturday her mood returned to how it was before the medicine: crabby.  We could see an obvious change from the girl we'd rediscovered to the girl we've come to know so well.  Our first thought was that she wasn't sleeping well again.

We began putting her to sleep earlier, letting her sleep later, and encouraging naps.  Despite that, I was noticing moments when her speech would slow, and she'd stare out--I didn't see her eyes flutter up though...until yesterday at dinner.  I've been suspecting that she's been having her seizures again since the weekend but last night we confirmed it.  As we sat eating dinner, Joe and I looked at one another and nodded our heads--she'd definitely "fluttered" away.

Today I called the neurologist and spoke with a nurse.  She took down the changes and said she'd call me back.  After about three hours, she did.  She let us know we need to have Sophie's blood work done again before her morning (6:45 am) dose of the medicine.  Luckily the lab opens at 6:00 so we'll get in there and hopefully be able to reclaim our routine without much difference.  The nurse said once the results were faxed to them, they'd call us.

A friend of mine who is the nursing director of the hospital I work at, suggested yesterday when I mentioned things were shifting, that perhaps her Depakote level had become toxic which would cause similar results.  She guessed we'd need blood work done--she was right about that. I'm hopeful that it's not toxic and she just might need a little more--I'd hate to know we've been giving her this medicine for two weeks at a toxic level.

So, wish us luck tomorrow morning with the blood draw.  Say a little prayer for us if you pray. Luckily, after it we'll be picking up doughnuts for the daycare the girls go to--Sophie always gets a reward after being poked plus it's the end of their two weeks in daycare together, on Monday Sophie starts Kindergarten and Wendi starts daycare at my work three days a week.

I feel that I'd really adapted to the new Soph.  I feel empty of energy to put into this again.  I'm curious, who pulled out the rug from under us just after we got our footing?  I'm hopeful that this will be easy to solve.  I'm grateful for a supportive community.

Weekly Update #1

We've had a very eventful week with Sophie:

First, her physician called and the MRI was completely normal.  The only thing it did show was Sinusitis.  We're thinking this is related to the "breath holding" and will be taken care of when we get her to the pediatric ENT and her adenoids/tonsils are assessed.

Second, we are not seeing seizures any longer.  During the late half of this week, neither Joe or I have seen any seizures.  We're hoping that they're done and medication is working just as it's supposed to.  Hurrah!  On a related note her mood is also MUCH better.  She's playing nicely with her sister, she's using her manners, and she's much kinder to all of us.

Third, today was her last day of pre-school!  Next stop Kindergarten.  A great aside to this is that today her teachers stopped me to say that, they don't know what's happened but over the past two weeks, "She's really come out of her shell!"  She's participating in group time, volunteering to answer questions during reading time, and she's engaging in conversation!  If you know Sophie at all you'll recognize that this is a huge achievement.  Usually we get reports from her teachers saying they couldn't evaluate her due to her shyness and unwillingness to participate.  Everything is turning around.

Sometimes I just give her a big hug saying, "I'm so glad you're back!".  She really is back!

Woops, I forgot

There was one part of the story from yesterday that I forgot about until half way through my day today.  After the MRI was completed, the Pediatric Anesthesiologist came into the recovery room to let us know that Sophie needs to be referred to a Ped's ENT for a sleep study.  She apparently did a lot of "breath holding" during the MRI, which can be expected per the Anesthesiologist when one is under sedation but not to the extend that Sophie was doing it.  She asked if Soph snores, to which I replied, "Yes, and I talked to her pediatrician about that earlier this month but he said her tonsils look fine."  The doctor yesterday, did not agree.

So, we called our usual Pediatrician today who gave us the name of a Ped's ENT he suggests for the evaluation.  If it's not one thing, it's another.  But on the good side, if this will help my daughter get a good night's sleep in the end, I'm all for it.  I love the little girl I am getting back and I've been missing her for a long time.

MRI--Long Post, Sorry

Well, what a day!  To start the day off, Sophie fought her medication tooth and nail this morning.  She wanted nothing to do with drinking it and does not understand what "clear liquids only" means.  Luckily today was her first morning on two pills and we think she got down about one and a half, so I take it as an accomplishment.

Arriving to the hospital went smoothly, and we got into day surgery way ahead of schedule.  The nurses and doctors were great, and we were all very comfortable.  Sophie drank the initial sedative with no issue, but hated the effect.  She became SO crabby along with loopy and tired.  She got off to the MRI without any real issues though.  They updated us throughout the process and she was done within an hour and a half.

Waking up from the sedation was a different story--what was expected to take between 15 and 45 minutes, ended up taking over two hours!  She just struggled coming to, and even after she did wake up after an hour and a half, she could not hold up her head and it was like holding an extra-large infant as her neck bobbled all around!  Once we got her dressed and somewhat ready to go, she fell right back to sleep.  By 11:45 we finally left Day Surgery to head up to her doctor.

The doctor's visit was great.  He explained what showed on her EEG which was sudden large bursts of electricity while she was sleeping-- they happened drastically and frequently, besides the more normal (for Absence Seizures) bursts when she was awake.  He did not have the MRI results but continues to be hopeful that the medication will stop her seizures.  He said that after two full weeks on her current does of Depakote (250 in the morning and 250 in the evening) the seizures should stop completely.  If not, then we can go up one more pill at night, but he hopes that won't be needed.  He is also confident that we'll get her stable enough on the medication to be alert during school.

The more long-term story he is leaving up to us.  He stated that if, in three years, she hasn't had any seizures, we can decide if we want to try weaning off the medicine to see if she can handle it; or, if we aren't comfortable with weaning her yet, we can continue on it.  He focuses on treating the child rather than the test results and doesn't think we'll need another EEG if we believe she seems more stable!  Big sigh of relief on that one--no more 3:00 am mornings any time soon.  The only bad news is that she will need to have her blood work done every few months--not too bad.

When we arrived home she was exhausted and spent the early part of the afternoon in our bed.  The one time she got out of our bed, she went to her own and threw up all over it!  I called Day Surgery and this is normal after sedation and it was the only time it's happened since we've been home (I have to say that honestly, I was more upset that I changed her sheets LAST NIGHT than that she got sick).  The rest of the day has gone well.  Her energy is back up, she just took her evening dose of medicine and tomorrow she's back to Pre-School and I'm back to work...and in just three weeks she's off to Kindergarten.  I don't think this could have been done with better timing.  She should stop having seizures just in time to start Elementary School :) 

Holding My Breath

Tomorrow is the big reveal.  We'll be awake at 5:45 am to get Soph her medicine before she becomes NPO at 6:00, then we arrive at the hospital at 6:30 am.  The plan is register, go to day surgery for the anesthesia prep, then to Radiology for the MRI which is at 8:00 am.  After that she'll go to recovery while coming out of the anesthesia which they expect to be around 11:00 am.  Once she's cleared to leave we go up to the doctor's office and meet with him to figure out our plan.  The Radiology department told me today when the confirmed the appointment that it's doubtful the MRI will be read by the Radiologist by the time we get up to the doctor's office, so that's a big let down.  I'm hopeful though that when it's all said and done and we leave the hospital, we'll have a much better understanding of what's happening and what lies ahead.

I'm holding my breath and trying not to worry--I know my energy is better used elsewhere.

On a side note, it was comforting today to receive a great outpouring of love at work.  Many of the staff members at the hospital had heard what's going on and they asked how things were going.  We're being held in prayer by many people.  Thank you if you are one of them.  In my job, I know that prayer works, and I appreciate each one going out for her.  Please think of us often tomorrow and keep sending the prayers.  I will try to update this at the end of the day.

We're Home

We made it home tonight from four full days in Wisconsin.  It was great to be away from it all and take a breather from life.  It was great to talk to family and be assured of everyone's ongoing prayers and support.  Sunday, Sophie started the two pills at night--she was knocked out by them.  It was almost as if she was drunk as she walked dizzily and bumped off of walls.  Over the week she's also picked up the side-effect of non-stop hunger.  Every hour, no matter what she's already eaten in the day, she's begging for more food--the amount she ate today on our drive home alone was jaw-dropping.

Back to our vacation, for me, the greatest moments of the trip were those when I was with Joe in an aluminum boat, gliding over the water.  The beautiful blue sky above us sprinkled with fluffy white clouds, the green trees surrounding the lake, the water surrounding me and lapping against the boat under my feet, the pure air.  I know it may be cliche but I do feel closer to God in the Northwoods.  As we rode over the waves, I tipped my head to the Heavens and poured my heart out in prayer.  I'm confident they were heard.

On a more disappointing note, I have not yet noticed any big reduction in seizures.  I feel like the medicine makes her so tired that she has a lot more time drenched in drowsiness which is filled with seizures.  Tonight as I put her to bed, she had a large one and it broke my heart.  I long for her to go to bed, take her medicine without a seizure in the middle of it.  Tonight when she had it she was saying, "Mommy, I love y...Tara, you're beautiful".  I feel the same about her.

Things I'm learning

Yesterday when we woke up, Sophie had a sore on her face near her mouth.  I've now recognized that I am going to become one of those paranoid moms who thinks everything little, is something big.  I think I was in the midst of a panic attack all morning, worried that the sore was an alergic reaction to her medicine.  Unfortunately because we were heading up to Wisconsin, I decided not to take the time to call the pediatrician.  On the drive north, she put A&D on it about once every 30 minutes.  I'm glad to say that as the day went on, it did improve and this morning there were no more sores and that one is not bigger.  I'm very relieved.  As I said though, I now recognize that nothing with Sophie is going to seem like nothing to me anymore.  I grieve the abilitiy to just "pass it off".  I pray that this sore is something okay to pass off because we'll be near Hayward until Tuesday and I'm looking forward to relaxing, not worrying.

My second lesson of this trip is that Sophie needs a strict bedtime on this medication.  Wendi wouldn't fall asleep last night alone because she isn't used to her grandparent's house, so I laid with her and ended up falling asleep myself.  Since we never discussed a bedtime for Soph, I heard her being brought to bed at 11 pm after spending the evening outside with family!  Again, because of unfamiliarity, Wendi woke up at 6:30 am wanting to play with everyone so unfortunately Soph was awoken.  That equals 7.5 hours of sleep for a girl whose medication's strongest side effect is drowziness--you can guess what her mood is this morning. 

For the next four days we'll be up at a cabin near Hayward and I won't be able to get online as far as I know.  Hopefully Sophie gets better sleep, we all relax a little, and we're filled up with joyous family time!

"Full Speed Ahead"

This afternoon I heard back from the neurologist, after leaving two messages begging him to call before I head out of town for the weekend.  The conversation went a little like I expected, but it's easier to expect something than to experience it.  He did confirm that there is a great amount of abnormal activity on the EEG and that the activity is "indicative of Absence Seizures", but he added that not only does she have a high frequency of seizures while awake, she has an even higher frequency of them while sleeping--abnormally high. So, the take-home from the conversation is that my daughter seizes all night rather than sleeping.  Although this sheds light on her volatile attitude, it also makes me very sad to know it's been a long time since she's had a good night sleep.

Our path now is to speed up the titration of the seizure medication so that rather than one in the morning and one at night until we see him again at our next appointment, which was August 14th, we now go up to one in the morning and two at night on Sunday, then two in the morning and two at night next Thursday.

Also on Thursday we have to be at the hospital by 6:30 am for an 8:00 am sedated MRI. I'll update on that process another time, but after she's out of sedation and cleared to leave which is expected to be at 11:00 am if all goes well, the doctor asked that we come straight from the MRI to his office.  This is one of those terrible doctor's appointments when rather than scheduling it, they just ask you to come to their office to talk.  I'm sure you can guess how Joe and I feel about that.

The doctor closed our conversation by saying he's hopeful and that he thinks the medication at some point will be able to stop the seizures, we'll just have to see how much medication it takes.  Needless to say, I left work a couple hours early after talking to him and went home to just cuddle my daughter--who by the way came down with a fever yesterday after getting up at 3:00 am for her test.  So now she's not only epileptic but also sick.  On a good note, Wendi is over the cold and enjoys reminding us, we're sick and she's healthy.

"Sticker Day"

Sophie's been taking her Depakote for one week now, and although it does seem the seizures are less often, they are no where near gone.  She continues to have about one every twenty minutes if not every five.  I've learned it's not uncommon to have 50 to 100 seizures a day with this condition, it seems to me that many days she has more than that.


Today, Sophie and I woke up at 3:00 am to prepare her to be fully sleep deprived for her EEG.  We started our morning with cartoons, then Walmart, then Denny's for breakfast (I highly recommend their new Strawberry Pancake Puppies by the way), next was a park and then home around 7:00.  The family spent the morning running errands until it was time to head to the hospital.  Sophie handled the exam perfectly, she sat still and was quiet while the "stickers" were put on her head, she closed her eyes and opened them when asked for the strobe light, she blew on a pinwheel for three full minutes (hyperventilation again), and then fell sweetly to sleep for the finish of the test.


I saw her have various seizures during the hyperventilation, but no other time.  When it was over, I said to the tech, "She twitches a lot in her sleep but I don't know if that's due to seizures..."  She replied, "It was, she had a lot of activity while sleeping--she's pretty bad.  I probably shouldn't say anything, but I'm a mom too and I'd want to know."  There went the air.  I was hoping for normal or not-so-bad, I was betting against, "pretty bad".  The tech was going to call the neurologist to get him to read the test stat since we head out of town Friday for a vacation in northern Wisconsin.  


Tomorrow we start the morning dose of Depakote along with the evening one.  I'm guessing with time, we'll end up at three doses if the tech was right and it's as bad as she said.  I've trusted God through all of this, and find peace knowing "The Kingdom of God is at hand".  I stared at her beauty and prayed for her while she slept during the EEG.  I know she is so much more than this and I don't want it to become her.  I hope that by journaling about it here I can remember each stage and look back someday to see how far we've come.


I've attached a picture of how we're continuing to let her live her life. This is what gives her the most joy even though we hold our breath that she won't have a seizure while doing it.  She tends not to lose her hands when she goes absent though, just her eyes and train of thought so I think we're safe.  Even so, this will probably soon be on the list of things the doctor tells us not to do, but we love her smile and her laugh and won't let this new journey stifle them or the fun in her life.

"Take a Deep Breath"

On July 3rd, at Sophie's Kindergarten check up with the pediatrician, we explained to him a habit that she's had for the past few months which has recently become more frequent and more mysterious.  The pediatrician immediately expected "Absence Seizures" when I described how they began when she was tired, how her eyes flutter to the ceiling for just a moment or two while she pauses briefly from speaking or eating, and then how she returns to whatever she was doing as if nothing happened.  


At the appointment, he repeatedly said to her, "Take a deep breath....Again...Again...Again..." until her eyes fluttered up and she laid down on the table in exhaustion asking to stop. At that point he confirmed his diagnosis and referred us to a Neurologist.  It took three weeks to meet our new doctor, and when we did he was disappointed that we hadn't got in sooner.  After a brief exam, he stated, "She should have been on medicine yesterday!"  He began her on Depakote that night.  He also ordered blood work to get baseline counts before starting the medicine because it can be hard on the liver, an EEG to confirm the diagnosis, and an MRI.


The blood work was rough on her, but I think the anticipation was worse than the event.  She cried the entire wait to get into the lab, the entire time the phlebotomist prepped her arm, and screamed when she was stuck.  It was over quickly though, and she got a Cake Pop at Starbucks on the way out.  


She left her ID bracelet from the lab on through her Birthday party on Sunday.  I guess even though she hated the experience, she loved the free accessory.  The Birthday party was a huge success--more friends than we'd ever expected.  It was great to get together with friends and family and to get back to "normal" life.