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Night 2
Last night wasn’t so good – Em was awake until 4 am. Not really surprising, on a number of levels. First, she tends to have this kind of experience with meds frequently – great the first time, then...
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That was easy… again!
Em got a very nasty ingrown toenail worked on today. And she did great. When she had the other foot done in August, we were so concerned – about the local anesthetic, about the possibility of...
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He’s a keeper!
Glory, Hallelujah, folks, I think we have a keeper. Now, I have been burned too many times to believe that the first appointment will tell me all I need to know… But, we both really liked Dr. V and I...
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An appendectomy was not in my plans this week…
So, we have had an exciting couple of days. I think it is only a few days but it feels like a month. Monday, Em started complaining about a stomach ache. As the day progressed, so did her pain and...
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A Cautionary Tale
I wanted to take a few minutes to talk about one particular aspect of our frightening experience with my daughter’s recent appendicitis and surgery. I am sure that experience is frightening enough for...
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Surgery Tips Part 2
So, Part 1 described the things that went well for us during Em’s emergency appendectomy. Thank God, all went well and was much easier than I would have thought (if I had had time to actually think!)....
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Love that Doctor
Em has been having significant pain after her surgery. A little more than 2 weeks post appendectomy and she still needs pain meds, pretty much around the clock. The hospital was fairly generous with...
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Em’s Day at the Conference
If you are a regular reader, you know that I was pleasantly shocked when Em announced that she wanted to go to the conference with us, as I was making plans to go earlier in the summer. That...
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“Strong is what happens when your weak runs out”– A guest post by Emily
11 years old, and EDS had struck. I lost my life. Now the meaning of ”Hey mom, I’m going to the park with the neighbor kids” doesn’t mean anything. The things that gave me a rush before are pointless....
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EDS shoe woes and solutions
Long term readers know that shoes are an ongoing problem for my daughter – and, if you have EDS yourself, you probably have your own shoe woes and know of what I speak personally. I would just give up...
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Pain Mangagement Live Event CCHMC
You may have already seen this around, but I thought it was definitely worth sharing here. (This is copied with a few tweaks from information shared by CCHMC on the EDNF message board): Our next...
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CCHMC EDS/Pain Chat
I hope you were able to watch the Q & A with Drs Neilson and Goldschneider last night. I thought it was a really good discussion and, if you did miss it, it will be posted on YouTube soon. As I...
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Free Justina
There is a case in the news that hits awfully close to home for me and other families who live with a chronically ill child… There is a young lady, a 15 year old named Justina Pelletier, who has been...
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Can’t say nothing exciting ever happens…
Things have been chugging along pretty much as usual around here with Em, with not much of consequence to report recently. Then something happens to make us sit up and pay attention. This weekend, we...
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Why I Fight For Invisible Illness Awareness
You would think it would be obvious to me, of all people and after all we have dealt with over the past 5 years. It should be obvious that you can’t ‘see’ an invisible illness, right? And it is, of...
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One more thing…
Thursday morning, Em told me her ear was feeling funny when she woke. She had tried to gently clean it out, she used a Q-tip (just the tip, didn’t even insert the cushioned part all the way) but heard...
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To the Nurse Practitioner who saw my daughter in the ER Thanksgiving Eve:
To the Nurse Practitioner who saw my daughter in the ER Thanksgiving Eve: It was the day before Thanksgiving. You probably didn’t want to be there any more than we did. But, I am willing to bet that...
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A Win: Finally
Picking up the tale where I left off in yesterday’s post, we were in desperate need of someone to help. Em’s pain was out of control, the Rheumatologist was clearly not interested in helping, and we...
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Catching Up and Hanging on: Part 2 Concussion
Part 1 can be read here. As we waited to get to the concussion experts – and fortunately we did not have to wait long – Emily’s concussion symptoms remained concerning. She is having trouble reading...
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Catching Up and Hanging On: Part 3 Shoulder Woes
To recap: a lot going on… concussion and post concussion symptoms, possible CSF leak, recurrent ear infections. Lots of doctors. Blah. Blah. Blah. Here are Part 1 and Part 2 if you want the longer...
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