Sunday, April 05, 2009

Random Randomness

We have really been slacking with the blog lately, huh? Here is an update on a few things:

If anyone is missing some germs, they are probably here. You can take them back at any time, we are DONE with them! A few weeks ago, Emily had a stomach bug that lead to diarrhea, which lead to a nice little diaper rash. Not fun! Emily was nice enough to share her stomach bug with me, but not with Mike – isn’t she sweet? She didn’t want to have all that fun by herself. Once she got over the stomach bug, she moved on to a cold and what Mike referred to as: Boogerfest 2009. We were using the nasal aspirator nonstop so I actually bought a battery powered one. It plays music to distract the child, but it did not work – Emily was terrified and would scream the entire time we used it. It sounded good in theory – not so much in practice! She did decide to share these germs with both of us. I believe we single-handedly kept Kleenex in business – just doing our part for the economy.

Respite care is when a nurse comes to your house to take care of your child. We are continuing to seek respite care to no avail. We are entitled to 50 hours of respite care every 6 months. So far, we have received NONE. We have the option of working with one company (don’t you love having choices?). We have had about 6 different case workers and we have only met one nurse (she seemed nice enough, but I just wasn't comfortable with her). We have had other nurses make appointments and then call back to say we live too far away. Maybe these nurses grew up in RI where you have to pack a lunch if you have to drive more than 20 minutes for anything – I am not sure. We do have a new case worker who is determined to get help for us. Time will tell…

Church family:
We have an amazing church family. They are the BEST! Last year, one friend organized babysitters for us once a month. It was so nice to know that we had a night out each month. I believe the ladies enjoyed hanging out with Emily too (who wouldn’t?). This year, she asked if we wanted to do this again and I said no. At the time, Mike and I had plans to train a few people to feed Emily and learn to take care of her (the babysitters last year didn’t feed her, she would just skip a meal on those nights). Well that was another thing that sounded good in theory, but it didn’t really happen. So now another friend is trying to organize some help for us. Our church is full of servants like this – what a blessing! As a matter of fact, we did start training a very sweet high school girl. She did a great job with all the information we were throwing at her. She has a real heart for children, especially special needs children. This past Friday, she watched Emily while Mike and I went out to eat and went to the movies. It was so nice to get to spend some time alone. We were refreshed.

Emily continues to work with a physical therapist twice a month. She receives speech therapy twice a month and will start occupational therapy twice a month when all of her new equipment arrives. This may sound like a lot, but I felt that she needed more. This Tuesday, she has an evaluation at a local therapy center. I think it will be good for her to have a change of scenery and to be challenged by some different equipment. So I am excited to see how things go. Emily has recently been working on drinking a bit more. Mike and the therapist have done some work with a cup, but mostly they work with a syringe full of liquid instead – just to get her used to swallowing (it is applesauce mixed with prune juice – doesn’t that sound appetizing?). She has been doing pretty well despite the fact that she hasn’t been feeling great lately.

Well, that pretty much catches you up on our exciting lives. What’s going on in your neck of the woods?

By the way, I forgot to mention, we are all feeling better now. The Boogerfest has come to an end thankfully. Emily still has some congestion, but we suspect that is just seasonal allergies.


Katie Curry said...
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Anonymous said...


We too have in home nursing care as Henry uses a trach to breathe. His nurses are lovely and really know what to do. They've kept my son out of the ER on more than one occasion. I love our home nurses.