Archive for the 'Updates' Category

Samuel’s Famous…well, almost…

November 7, 2008 | Updates

When we were in the PICU at Primary Children’s Hospital 3 1/2 years ago, we were in a room right next to a wonderful family and the cutest little boy named Parker.  Parker is the kind of kid that wraps you around his finger in a heartbeat.  And his family is great.  Parker has one tiny extra chomosome that, in my honest opinion, makes him even cuter and more loveable than the rest of us.  Parker’s mom is the managing editor at an awesome site called “5 Minutes for Special Needs” and we’ve been asked to be a guest blogger there each Friday through the month of November.  Cool, huh?!

So, run on over there by clicking the button below and enjoy the first post of us introducing ourselves to them.  And then take a moment to pray for little Parker or visit his site to give his family encouragement as he is right now undergoing the third surgery needed to complete his “teeny, tiny, designer hiney.”  If you have no idea what I’m talking about, you’ll just have to go visit his site.  He’d love to have you there!

Love,

The Jewkes

They’re back…

November 5, 2008 | Updates

Well, Samuels seizures are back - in spades.  But at least this time I know what they are and don’t feel like I have to race off to the ER to make sure he’s ok.  I still worry about him - tons, though.  I’ve been making him sleep with his pulse-ox on each night so I can watch his heartrate and oxygen levels.  I swear sometimes his lips turn pale when he’s having the seizures and that DOES freak me out.  So, I’ve been watching him close.

The seizures showed back up on Saturday.  They are the quiet ones like in the video I posted about a month ago.  He just looks completely zoned out.  It reminds me of the the description of “locked-in syndrome” where people are completely paralyzed except for their eyes and their minds still work perfectly well.  That’s how it is with Samuel.  It’s almost like he can’t move a muscle.  But his eyes still follow me and he still makes little laughing sounds when I play with him.  It’s REALLY weird.

In some ways it makes it easier to take care of him when he’s like this because he’s not so wiggly.  But I would rather have wiggly than zoned out because I just feel so awful for him that I end up sitting and holding him as much as I can just so he doesn’t have to be stuck in his little body all alone.  Plus, he’s had laughing seizures in the past where he just starts laughing for no reason but I can tell it’s seizure related because his face is a little “twitchy”.  But twice now, he’s had crying seizures.  And when I say crying, I mean sobbing. 

It was a strange thing for me when it happened the first time.  I was putting laundry away and suddenly heard him start crying.  He has different cries and most of them don’t sound “normal” like other children sound when they cry.  When they do sound somewhat normal, then it means he’s in pain.  So, of course, I came running.  But this was even a different cry.  It was completely normal.  And he cried so hard and for so long that he was sobbing.  There were tons of tears even.  It was odd because there was a small part of me deep inside that was thrilled that he could cry just like any other child.  Just to know that that part of his brain still existed was incredible.  But that faded pretty quickly as the sobbing lasted nearly an hour and there was no consoling him.  I finally concluded they were seizures because he would laugh right in the middle of a sob and then go right back to crying.  And sometimes, they would turn into convulsive seizures that lasted a minute or two.  Luckily, they only happened twice and we haven’t seen them for about 36 hours.

So, here is my plan.  I upped his Keppra a TINY bit thinking that maybe since he’d gained back the few pounds he lost a few weeks ago that maybe he needed just a little more.  I REFUSE to go up any higher, though.  I don’t want a repeat of last time.  Then the doctor recommended I also up his Neurontin.  So, we started that last night.  It probably won’t help.  It’s not a very effective seizure med.  The doctor said it actually could make the myoclonus seizures worse.  Let’s hope it helps instead of hurts.

The second part of my plan is to try a different diet.  I know Samuel has digestion problems.  So a better diet certainly can’t hurt.  Someone posted information about a gluten free, caseine free diet that I read up on and started Samuel on last night.  I also ordered a book with information on a similar diet that I’m hoping will arrive soon.  Hopefully, something will help.  But if we don’t see improvement in the next few weeks, we’ll have to resort to trying some other medications.  I have a feeling that before we do that, though, our neurologist will order another MRI just to ensure there isn’t anything bad going on in Samuel’s brain.

So, that’s the story for now.  I wish I could say things were back to normal.  But, we’re pretty much back to square one.  Hopefully, we can find something soon.  I sure don’t want to be doing this clear into the New Year.  And I’m sure Samuel doesn’t either!

Love,

The Jewkes

P.S.  Funny little election story.  Wes came home on Tuesday and said, “Mom, all the people voting for Obama must live in other countries.”  To which I replied, “Huh?  You can’t vote for a U.S. President if you are a citizen of another country.”  His response was, “Well, we took a poll in our class at school and everyone voted for McCain.  So who in the world is voting for Obama?”  I had to laugh.  It’s funny how when you’re little you think that the little world you exist in is all there really is.  And then I explained to him about how he lives in a Replublican state and that if he lived in California or New York, all the kids in class would’ve probably raised their hands to vote for Obama.  Kids sure are cute!

A Halloween Tale…

October 31, 2008 | Updates

Once upon a time there was a wonderful wizard who loved everything in the world - literally.  He was facinated by the smallest creatures and the largest ones.  He loved nature and science, building things and taking things apart.  His mind was constantly working, thinking, creating.  And that kind of imagination brought him the greatest of joy, no matter what was occuring in his life.

At that time, there was also a great indian child.  This child seemed wise in so many ways.  He was quiet, seldom making a sound.  And, yet, his deep brown eyes gave you the impression that he understood far more than anyone could ever possibly know.  He was kind and gentle and endured all that came upon him with the greatest of patience.  Everyone in his world seemed to sense that they were learning a great deal just by being near him.

There was also, at this great moment, a frog.  This frog was a silly frog.  One who loved to jump and run and give kisses to all those around him.  The frog loved all animals and when he wasn’t acting like his little froggy self, he was pretending to be a lion or a tiger or some other silly creature.  He was a busy little frog and gave his family much trouble as he wandered around getting into everything in sight.  But just when he was about to get in trouble, he would pout his little froggy mouth and look up with his big, blue froggy eyes and say something sweet like, “Tank a Momma.  Tank a.” which his mother could easily translate as “Thank You, Mommy.  Thank You.”

And thus it was in the Jewkes kingdom on Halloween 2008 where it appeared that each little boy had chosen to dress up as something that really fit his character.  And their mother was proud to have such dashing young boys as her children and was ever grateful for the joy they brought into her life…

We had a good Halloween.  I realize 2 of my boys are missing from this picture.  (Don’t act all surprised.  I usually notice if one of them is gone - eventually :).  But Tanner is getting too old to hang out with us on Halloween and Ben was off spending some quality time with Dad while we were unabashedly collecting our candy!  As for the 4 of us that did Trick-or-Treat together, the weather was perfect and we had a great time. 

Here are a few pictures of Nathan after he had combined his candy and Samuel’s into one large bucket.  I entitle the first one, “Whoa! Did you see all the loot I got!” and the second one, “I KNOW you aren’t even BEGINNING to think about touching even ONE piece of candy in this bucket!  Am I RIGHT?  Well, AM I?”

Samuel has been doing better for about 4 days now.  He’s even been giving us smiles.  Yea!  Tonight, he sounds a bit congested again and has had an obvious stomach ache.  (Not from candy!  I mean, did you see the look on Nathan’s face?  Do you really think he was in a sharing mood?)  I’m hoping Samuel will fall asleep soon.  But I think we are slowly getting back to normal.  I’m really hoping that Samuel will be doing well enough to go to school next week.  I could have taken him the last few days of this week, but his sleep schedule is still a little messed up, so he hasn’t been going to sleep early enough to get up in time for school.  Hopefully, I can have that fixed by Monday.

Here’s to hoping you all had a fun Halloween!  Thanks again for all your prayers.

Love,

The Jewkes

Still on the mend…

October 27, 2008 | Updates

I’ve sort of lost track of days here.  I did talk to the neurology nurse the end of last week about Samuel’s constipation and she suggested a homemade enema.  Tell you what, it worked.  Some whole milk mixed with molasses and warmed up.  I put linoleum on the floor in Samuel’s room on top of the carpet about a year ago to help give him more input when he’s on the floor.  It’s ugly the way it’s duct taped to the floor.  But everytime I think about pulling it up, I realize how happy I am that it’s there.  So let’s just say that when that enema kicked in, Samuel’s diaper did no good and had it not been for the linoleum, we would have had to recarpet the room.  Seriously!

Samuel wasn’t kicking and crying and hurting himself all weekend.  Thank heavens!  But, he was miserable.  He just made this little whining noise all weekend and held onto that low grade fever that he’s had for a week now.  He acted the same way he acts when his bladder is full which makes me think he had a stomach ache.  He was also really congested and had me worried there.  And, his seizures that keep him from sleeping came back.  So, for 2 nights and days, he could only sleep about 3 minutes at a time.  Ugh!

However, 2 nights ago I pulled out a big bean bag from the basement so I could sleep on the floor in his room.  And last night, Samuel fell asleep on the bean bag with me and slept from 11 pm until about 1 pm today.  And today, he is MUCH happier.  He still isn’t completely back to normal, but he is closer than he’s been in nearly 2 months.

His little toe still looks so sad, but much better.  His hands are healing right up.  His tongue is healing, too.  One entire side of it is bright red in a splotchy pattern where I am assuming he chewed the heck out of it.  But it is looking better each day.  I still am not getting the smiles I normally get from him, and that makes me sad.  But I am NOT complaining because he is so much better than he has been and I’ll take a full night’s sleep any day!  His oldest brother also has some sort of cold or flu and has been fighting stomach cramps for 2 days, so I’m sure that’s what Samuel is recovering from.

So, here’s to hoping things only go up from here!  I’m a little leary to try another seizure med.  (Ok,  A LOT leary!)  I’m looking into a diet change that may help.  We’ll see.  I’m just hoping we can get back on some sort of schedule.  Hopefully, Samuel can go back to school this week.  I think even he would like that :).  And that might give me some sort of chance to catch up on work.  But trying to cram the last 6 weeks of work into my schedule at any time is pretty much impossible.  Oh, well.  It all has to work out in the end, right?

Thanks for all your prayers.  And, if you sent me an email and didn’t get a reply, it’s not because I didn’t send one.  I usually send a reply to every email or comment, but I got so far behind these last few weeks and then my email was giving me issues and people have said they didn’t get a reply, so I don’t know how many went out and how many didn’t.  Please don’t think it’s because I don’t care.  I do!

Love,

The Jewkes

Things are looking up, I think…

October 22, 2008 | Updates

Ah, it feels like Friday, but it’s only Wednesday.  But that ok, because things are looking up, I think…

We’ve done 2 more blood draws since the last one that came in in the 700’s.  The third one was in the 600’s.  The last one (done on Tuesday) was in the 500’s.  So, Samuel’s liver is healing and that’s certainly a good thing.  However, the posturing, crying, kicking, flopping and always being drenched in sweat continued through Tuesday morning.  We mostly held him every waking hour because putting him down hasn’t been much of an option.  Luckily, he has slept most of each night, with the help of a lot of medication.  That has been our saving grace.

By Monday night, I had just about opted to take him down and check him back into Primary’s.  I was at my wits end and out of ideas of what might be causing it all.  We have all his meds and feedings back to what they were before this all started.  And Monday afternoon, he started running a fever of 101-102 degrees.  This concerned me, so I called the neurologist.  He said to watch him overnight and try to keep the fever down, but not to give him any tylenol as that would keep his liver from healing.  So, I slept on the floor in his room with the window opened trying to keep him cool, but worried that he might get chilled. 

By Tuesday, I was sure we would head to Primary’s.  I called his rehab doctor and explained the whole situation to her and she said the only way to get checked into the hospital would be to go through the ER.  I HATE going through the ER.  I called his neurologist again and he suggested we take him to his local pediatrician one more time to make sure it wasn’t something simple.  I consented to do this - despite the fact we have been there more times than I can count in the last few weeks - for one reason and one reason only…Tom.

Monday evening, Tom gave Samuel a Father’s blessing and blessed him that he might somehow be able to tell us what was wrong with him.  It was probably 3 am that next morning that I finally couldn’t take sleeping on the floor in Samuel’s room anymore and headed up to my own bed.  As I climbed under the covers, Tom jumped slightly and stuck his arm out like he didn’t want me to get in bed and said, “Sore throat.”  I was confused to say the least and said, “Do you have a sore throat?” thinking that he must be sick and didn’t want me to get too close and end up getting sick, too.  He said, “No, that’s what’s wrong with Samuel.  He has a sore throat.”  I laughed silently to myself and thought Tom must be talking in his sleep and said, “Uh, oh, ok?” and climbed into bed and went to sleep.

Tuesday morning, I told Tom what he had done.  He smiled and said, “Yea, I had the most vivid dream.  I dreamt I was holding Samuel and suddenly it came into my mind that he had a sore throat.  So I asked him in my dream if he did and he made a noise that I knew meant yes.  It was so vivid that it seemed entirely real.”  And that is why I consented to go the pediatrician one more time.

And guess what?  Samuel has a sore throat.  Score one huge one for dad!  His toe was also still infected.  So, they switched antibiotics and we came back home.  By Tuesday evening, Samuel was calm and sat on my lap for most of the night.  And today, he has been a very good little boy.  He even sat on his dad’s lap for 2 hours while I went to a meeting this evening.

Samuel still isn’t himself 100%.  I’ve been worried because he seems to be constipated, so I’m working to keep things moving right in him.  He also still has the constant low grade fever and this morning, he sounded congested.  Also, as I was brushing his teeth last night, I noticed he was missing 2 teeth, not 1.  I’m not sure when the other one fell out or where it went.  His mouth has been bleeding for days from his biting his tongue and cheeks, so I didn’t even realize he had lost the tooth.  I just hope it fell out or he swallowed it.  Leave it to me to be worried that he aspirated it and will get pneumonia from it :(.

But otherwise, he is SO MUCH BETTER.  He is calm and making lots of sounds all the time.  I do think he may be having a lot of myoclonus seizures and they are showing up as strange movements in his face.  But I have talked to the neurologist and have decided that we won’t mess with any of his medications until things settle back down and I feel that he is as close to his normal self as possible.  I need to be able to tell what a new med is doing to him and can’t do that if he isn’t feeling well to start with.

Thanks for all your prayers.  We are at least getting sleep at night and can now lay Samuel down for some time during the day and can know he won’t be hurting himself.  Keep praying he will get all the way back to normal - at least his normal.

Love,

The Jewkes