The Amazing Owen
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Merry Christmas

I thought that this Christmas deserved a special season's greetings message from us.  If you follow the archive links to the right, you will see that last year at this time Owen was Seizing Thru the Season.  It was one step forward and four steps back.  I believe I described it as "The Long Dark Tea Time of the Soul" (quote stolen from author Douglas Adams)  Not fun.

This year was shaping up to be the same way - from September until mid December he was unable to stay awake more than a few hours a day.  We couldn't figure out why.  We had pneumonia, poo issues and vague symptoms.  EEG after EEG, CT scans, x-rays, the works. 

But then things turned around.  We got the poo cleaned out and that solved the pain issues.  And then we got the big answer.  He wasn't sleeping due to shunt problems or seizures, it was mono.  The simple, obvious, and we never thought about it because 5 year olds don't usually get mono, but this 5 year old spends a lot of time in germ infested hospitals and doctor's offices.  But eventually I started showing the same symptoms that Owen was.  I was exhausted for no reason.  I went to the doctor and the blood test confirmed it - I had mono.  We had the same test done on Owen, but it is inconclusive in young children because they don't produce the same antibodies.  But with me testing positive and him starting to perk up in just the right timeline for mono to be overwith, it's a pretty certain thing. 

And so now Owen is slowly coming back to normal.  He is staying awake all day and he is moving around more and more.  It is taking time for his strength to build back up, but he is getting there quickly.

But wait, there's more!!!  It has been 2 months and 22 days since his last seizure.  This is an unprecedented break for us.  Between the VNS, the new meds and Jigsaw's help, Owen has finally managed to get enough of a breathing space to be able to thrive again.  This alone would be an unbelievable Christmas present!

These pictures are from Owen today:

Owen taking a cookie out of a bag all by himself.  It may seem simple to you, but this is a complicated task requiring him to hold on to the bag with one hand and to reach in with the other to grab something he can't see.  It was a task that he finally learned how to do a few months ago, but then stopped doing again while he was ill.  At 5 years old he has finally truly mastered this basic task.  He spent his morning happily pulling animal cracker cookies out of a bag.  Hey, it's Christmas, he can have cookies if he wants to!


And Owen just loves to push buttons.  He can't play the games or follow the instructions that the toy is giving him, but he knows that if he pushes buttons things make sounds or flash lights and he likes that:


His friend Mya sent him some jingle bells that he had a wonderful time with:


Recently Ms. Pat, Owen's special ed teacher, started trying him out with an iPad.   I have downloaded the same apps onto my iPhone to help him start to learn the basics.  The best one is a virtual xylophone where you just have to touch the screen and it will play tones.  Owen isn't up to touching specific spots to make specific things happen yet, we are just trying to teach him to touch the screen to cause something to occur.  He is learning and he likes the xylophone sounds.  Grandma and Grandpa recently got an iPad and here he is with Grandpa trying out the xylophone (Music Sparkles is the app name):


So this Christmas we are counting our Blessings.  Having two healthy kids who are home for the holidays and doing well makes this an awesome Christmas!


Merry Christmas to all, and to all a Good Night!

Here We Go Again
My pronouncement that the clean out was successful may have been somewhat premature.  Owen certainly improved after the hospital visit, but he never quite got fully better.  He stopped sleeping all day long for a little while, but then he got pneumonia because he had aspirated during the last clean out and of course he slept a lot with that.  And he perked up after we got him the antibiotics.   But then he started having massive pain again.  And the day before yesterday he started sleeping all day again.  So yesterday we brought him into the GI.  His regular one and our backup guy were both out so we saw the nurse practitioner.  Very nice lady.  She declared that he was full of poo after examining him and sent him off for an xray.  Then she called us and said the x-ray confirmed that he was full of poo.  The hospital was full and it was late in the day so she said they would see if they could get us a bed in the morning.  Called this morning, still no beds, come to the ER. 

So to the ER we went.  We waited for about 2 hours and then the doc came down.  We haven't met this GI before, he's the third one in the practice.  I don't like him.  He started out by saying that he didn't think that Owen was backed up at all and that he was just screaming because he didn't want to push.  This isn't out of the realm of possibility, but I asked why it was that both the NP and I both saw lots of poo and why therefore didn't he.  He said that Oh yes, he has lots and lots of poo, but it just isn't severely impacted.  I explained that since Owen has had very little solids to eat that the poo that he is seeing has survived a full 4 liters of go-lytely, double the adult dose daily for two weeks of Miralax, senna, magnesium citrate, you name it and that what little comes out looks like beach sand.  He again said that yes he's full of poo but that it wasn't all that hard.  OK.  Then he did a rectal exam and said that he didn't feel anything there either. Then he said he wanted us to go home and try more laxatives and more stimulants and see how that goes.  I said I wasn't going to try more of that stuff until he was cleaned out because we had already tried all of that.  Then he said that they still don't have any beds for him so they can't really do a clean out for him now anyway.  I told him that I was NOT taking him home screaming like he is in pain.  That I have had to keep him on Ativan for the last few days because otherwise he is frantic in pain and that they really need to fix it.  He reinterated that Owen is not in pain and that the screaming is behavioral.  I flat out told him that he was wrong.  I can easily believe that Owen is afraid to push, but I do think that after 5 years I can at least tell when he's just pitching a fit and when he's in pain. I asked him if the go-lytely given again would be able to clean it out, since they had determined that last time they gave it way too fast and it didn't have a chance to fully do the job.  He mumbled something that the floor that I couldn't understand and I couldn't figure out whether he meant yes or no that it would help.

He then said that they would see what they could do and left the room.  I was thoroughly confused.  How does one person tell me that it's terrible and the next say there is nothing wrong, especially since I can SEE that something is wrong?  I called the nurse, because they generally know better what is happening and told her that I was feeling a bit lost and could someone please explain to me why I was getting two different stories.  I didn't want to be pushing for a clean out if that wasn't going to work and wasn't what was needed, but that I couldn't accept that somehow more laxatives were suddenly going to work.  She said that the doc had just come out and said that the kid really needs a clean out and could they please find him a bed.  I guess the whole thing came down to the idea that they really wanted us to come back on Monday and I really am sick and tired of being told that my kid has to be in pain or has to seize or whatever it is this week because the docs don't have time/room for him.  And yes, he is in pain no matter what this guy says. 

The upshot of all this is that they have found a broom closet or something that they say he can have.  I'm really hoping that we can get my little man happy again soon.  I know that this doc probably now has a dart board up with my picture on it...but Momma Bear just isn't listening to any more excuses.  I know that there are other sick kids here.  I know that they all need help and I certainly don't want to take a bed from someone else, but they need to figure out a way to help all of them and not just expect a 5 year old to endure 3 more days of pain. 
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