Finally feeling better

Poor Ben just got the asthma diagnosis after having a cold and coughing and coughing and coughing after it.  Then the poor thing got the flu.  The seasonal version, not the piggie (swine or H1N1) version.  His highest temp was 101 not super high like with the H1N1 version and he was able to have periods of being up and around not stuck in bed for 4-5 days like those that I know that had swine.

But at the same time it kicked his butt much more than a cold will.  It was easy to compare this to a cold since he was just getting over one a few weeks ago.  He ended up missing 2 days of school this past week along with the day of no school for Veteran’s Day.  Poor guy.  But finally he’s feeling better.  Hopefully he will catch a break now.  He’s my one that really doesn’t get that sick often so keeping my fingers crossed for him.


Laryngeal cleft message board up and running!!!

The new board is up and running!!  Please visit and join it here.  If your child has been diagnosed with a laryngeal cleft or is in the process of being worked up for one then this is the place for you!!  We also welcome parents of children with dysphagia and aspiration with other causes.


*******THIS BOARD IS NO LONGER UP***********

Cough-varient asthma

Benjamin was just diagnosed with this this evening.  It is the form of asthma that I have so I’m not too surprised.  I saw signs of it in him last winter too but this year it’s worse and it’s not even winter yet.  Uggh!
He is getting over a cold and just coughs and coughs.  A l l   d a y   l o n g.  But it’s at its worst when he is trying to do anything exertional.  He plays soccer (though the season is over now) and at both his last practice and last game he had to stop and rest because he had to catch his breath and get control of the coughing.  It’s so hard to watch especially since I know what it feels like.
The pediatrician put him on singulair to try and prevent any further episodes.  He said it will take up to 2 weeks to really make a difference.  If that doesn’t work then he will start on an inhaled steroid.  Hopefully we can get it under control before basketball startes at the end of the month.

Message Board/Support Group on hold

Hello all that have been following Jennifer’s story.  I haven’t updated in soooo long.  If you follow my other blog  then you know that I wasn’t well myself for awhile either.  But I’m better now too.  In the meantime this blog was put on the backburner.  I’m working on getting it back up to date but it’s a slow process. 

In the meantime, I have left the link for the message board/support group up but I have been slowly working on getting it moved to a new host site.  I have not been happy with the old one for awhile now.  Due to it being free there are a lot of minuses about it.  One of which is that the posts disappear after 7 days.  But if you are looking for information then having it not be there after 7 days is not good. 

But I found a new host that, while still free, is great.  However, it’s quite the process of retrieving all our old posts and moving them to the new site etc.  If I didn’t have 3 kids, 2 with chronic health issues then it would probably be done by now!!  So, hang in there and keep signing up at the old one that way I know to email you to move to the new one.  And please continue to have patience with me!  I do want to continue to offer support to each and every one of you going through this journey.  We are a rare bunch so we need to stick together!!

Peace, Happiness & God’s Blessings!!


Hello Flintstones!

Got the results of Sam’s bloodwork….he’s anemic.  Poor little guy.  No wonder he is so pale all the time!  She wasn’t surprised as he has had so much vomiting lately.  All we have to do is add a vitamin with iron and that should do it. 
The other tests I mentioned are scheduled too.  Just a waiting game from here.

First GI appt — Sam

Today was Sam’s first appt at the GI office.  He was seen there rather urgently due to the number of vomiting episodes he has had recently. We were hooked up with a rather nice and thorough APRN.  She works very closely with one of the GI doctors and in fact clears everything with him before we even leave.  I’m not used to that.  Every other APRN I’ve ever dealt with has just done our stuff and sent us on our way without consulting with a doctor in front of us!


She is pretty sure Sam has something called cyclic vomiting syndrome (CVS) but we will have to rule out all other causes of chronic, frequent vomiting too.  He will be scheduled for and abdominal ultrasound and upper GI series.  He had bloodwork today which he was none too happy about!!!  He will be started on a medicine called periactin that is used to try and lessen the frequency of his episodes and then will be given the antiemetic zofran as needed to try and ward off a cycle once one has started.  All in all it was a good visit. 


We now just have to wait for the calls about the bloodwork results and the appt for the next tests.

Another cycle, getting bad

I was called by the daycare this morning and they reported that Sam was complaining of nausea and has a fever.  They say he was fine one minute and it came on suddenly the next.  I went and picked him up and called the pediatrician’s office.  Unfortunately the pediatrician who has been working on this is off today…..uggh….can it get any worse!!

After an hour at least they call back and one of the other docs had called in some zofran for his nausea.  He was his usual pale, limp and inactive self.  But luckily he was back to normal about 30 min after the zofran and he never actually vomited this time.  Whew!!