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.
Cough-varient asthma November 4, 2009
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 September 8, 2009
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!!
Tracey
Another cycle, getting bad November 18, 2008
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!!
Cyclic Vomiting Syndrome November 17, 2008
Today Samuel was seen at the pediatricians office and evaluated for the vomiting. His neurological exam and the rest of the exam were normal so the pediatrician believes he may have a disorder called cyclic vomiting syndrome (CVS). He is going to consult with the local pediatric GI group for guidance and call us back within the week.
Frequent vomiting November 14, 2008
Today we got the first indication that Samuel’s vomiting may be more than we thought it was. He is our little vomiter. He gets the stomach bug quite often….or so we thought. It isn’t anything that we can mark a calendar by but it happens quite a bit. Much more than the other two kids. We were pretty proud of ourselves as parents because we figured we were doing super great handwashing by keeping it away from the other kids. Maybe not!
Last month he had an episode that lasted 36 hours and he was on the verge of being hospitalized. He saw the pediatrician in the evening for the vomiting and a respiratory infection. They said that if he didn’t stop overnight he would be admitted that next morning for hydration. Luckily he stopped about 2 hours after seeing them.
Today another episode. This one prompted a call to the on-call pediatrician as the first episode of vomit had flecks of blood in it. Among other things we spoke of how often he actually “gets the stomach bug” (my words). The pediatrician stated that it is much too frequent for this to be the stomach bug and that he wanted to see him on Monday once this episode was over as long as he didn’t get dehydrated with it.
That I can think of he has had 5 episodes in the last 6 months. They all just happen to be on dates that I can remember such as Mother’s Day and my birthday along with a few other important dates. Those are only the ones I can think of. I know there are more.
All of his episodes are very similar too. They involve intense vomiting. And I mean INTENSE. Repeated vomiting episodes, several per hour all total lasting from 4-36 hours. He is pale & lethargic. Lays on the couch like a limp rag. Almost like he can do nothing else but lay there. He always has a fever around 101 (my reasoning for thinking stomach bug). He sometimes complains of a headache but not always. And lastly within a day of the episode he always has a mucoid stool.
This one seems to be over for now. On to the pediatrician we go on Monday for his evaluation.
Broken arm chronicles part 3 October 24, 2008
Today was her second visit with the orthopedic doctor. He did some xrays again and said that really everything looks about the same. Still 2 fractures. 1 chip fracture near the growth plate and the other a buckle (or compression) fracture in the other lower arm bone.
But the good news is……………..no more splint!!! Believe it or not! It pays to be 3 sometimes!! He said that with her type of fractures it is worse to leave them splinted as the arm starts to become stiffened. She already had some stiffening present when he took the splint off.
Here is the hard part……….keep a 3 year old sorta quiet for the next 2 weeks! I would say that he must not have little kids but in reality he does.
Next appointment in 2 weeks for more xrays and recheck to make sure it is healing correctly.
Thickener trashing party!!!! October 24, 2008
Once we got the OK from the swallow study that Jennifer didn’t need thickened liquids anymore we decided to have a thickener trashing party!! It is so expensive that I did have a hard time just throwing it away but at the same time after having to use it for about 1 1/2 years it felt good too! Jennifer enjoyed herself too!!
This first pic is her showing the can of thickener:
This one is harder to tell what is happening because of the way she did it but it is of her pouring the thickener into the trash:
Unfortunately with the delay on the digital camera I didn’t get the next pic of her jumping up and down clapping her hands!!! What a happy moment for us!!
Broken arm chronicles part 2 October 21, 2008
This is quite the late update but Jen’s appointment went fine last Friday with the orthopedic doctor. He looked at her xrays and said that her 2 fractures were pretty small and that she was a lucky little girl all in all.
For now it stays in the splint and ACE wrap and she can wear the sling as she wants (but what toddler wants to!!!!) And then we go back on this coming Friday to have xrays done again and go from there.
Here is a picture of her with her splint on:
She has gotten used to it as you can plainly see!
Oh and I got an email from the GI doc and for now they aren’t worrying about her height since it is consistent with the 2 year one. I guess they really look at what they start doing after age 2 and so they will follow from here. She does want her remeasured in about 3 months though
Broken arm chronicles part 1 October 17, 2008
I have some news that everyone who has been following Jennifer’s story will not be expecting to read here.
Jennifer has a fractured arm. She slid down the slide at daycare and decided instead of getting off the end she would roll off the side. But instead of landing right she landed on her arm. The daycare thought it was maybe just bruised but with as much as she was complaining about it they took her to our urgent care center and sure enough it was fractured. Both of the lower arm bones near the elbow.
For now she is in a splint with an Ace wrap and a sling. She will see an orthopediatist later today at 2pm for an evaluation to see what further treatment she will need. I’ll update again after that.
Here is what she looked like the day she did it. She was in quite a bit of pain. Today she is much better.
