Tuesday, March 10, 2009

Another Not-So-Freaky Friday



What's the latest toy craze in our house? Baby dolls, puzzles? Nope.
Med. syringes. Well, at least she knows how to stick it out through a tough economy!




I wrote a part of this last Tuesday, but forgot to finish and publish it, so pardon the potpourri-ness (I just love making up words) of this post.



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Since I know you are all anxiously awaiting to hear the outcome of last weekend (and no, I’m not being egocentric…just sarcastic.....OK maybe a little of both) I am pleased to report that we came out unscathed. Only one dog was in a “no-lick-collar" by the end of the weekend, so we are calling it a victory! Of course the shortest weekend of the year was also our least dramatic weekend we’ve had in months. Go figure.

Of course we are still dealing with the never ending sleeping issues (Faith's latest trend is being wide awake from 12-5am...last night this included a decannulation. Oh joy) we finally seem to be getting somewhere with Faith’s medical team.

For the past several months we’ve gotten the run-around on the sleep issue. Faith’s pediatrician from the special care clinic at Children’s wants pulmonary to handle it, but at pulmonary appointments they pawn it off on the special care clinic…you catch my drift.

Enter my husband (who hails from New York, meaning being pushy and direct is in his blood) and we finally have a sleep study on the calendar. Yes, the sleep study will be inconclusive and meaningless (our child doesn't sleep and that's without a bazillion electrodes on her head) But that’s not the point. We cannot see a sleep specialist (translation: get DRUGS!!!) until we’ve gone through the rigmarole of the sleep study. So…long story short we are starting (very slowly) to get somewhere.

As Brian gave me the report from the appointment he enthusiastically said, “Do you even know what 8 hours of sleep would do for our lives? I can’t even imagine the possibilities!” Nor can I, but we can only hope!!!

On another note……I had a least a half a dozen people come to me this week, commenting on how Faith looks so great “standing” in the recent picture I posted. Yes, Faith looks GREAT but the picture is a little deceiving. Faith is by no means standing independently. While she can stand and “walk” (aka cruise) while holding onto a stable surface, she has a lot of balance and coordination issues to do be able to do it on her own. NOT like it really matters. In fact, it doesn’t bother us at all, and I do feel a little silly for even bringing it up, but I guess I just wanted to make a point that pictures can give false impressions.

With that being said, Faith is making a lot of progress in other areas and amazes us everyday with her determination and perseverance!

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Today my mom reminded me it was Friday the 13th, by saying, "good thing we are not superstitious.." to this my throat replied with another, "gulp."

It wasn't so much that it was the 13th....but once again it reminded me that another weekend has approached. Already we've had a lot of drama today (with our arch nemesis, the insurance company) but that's the kind of stuff that we deal with on a daily basis, so we are setting out for another victorious weekend. We even have plans to leave the house WITH Faith (GASP, CHOKE, COUGH).

I know, I know, we are living on the edge. Every time we do take Faith out (which is pretty much next to never) we are reminded of why we don't take her out. Weekend or not, I think we'll take our chances.


Hope you all have a fabulous out-and-about weekend yourselves!

Jen :)

PS: And no, today CANNOT be a bad day because another precious miracle came into the world 2 years ago today.... Happy Birthday Rissa-Roo!

4 comments:

Marissa said...

Thank you so much for Marissa's happy birthday wish, you are so sweet!

That pic of Faith is hilarious. Why do we even buy these kids toys anyway? Marissa has that same chair, she loves it.

Thank God for your New Yorker hubby. They sure know how to get things done, huh? So glad she will finally be seen for this problem. I can't believe her team didn't think it was a major problem until now!

Here's to another fabulous weekend. Have a great time getting out and about. I think we are going to try to take Marissa to the St. Patrick's Day parade downtown tomorrow morning, if its not too cold.

Have a great weekend,

Alicia

Hope said...

Thank God your husband spoke up. Sleep studies are real pains, but I'm so glad she's finally going to get help in this area.

Have a great weekend.

Jen said...

That picture of Faith made me laugh a little. She does look oh so sweet sitting there however.

I'm glad that you may finally be getting somewhere with the sleep issue. I can't even begin to imagine how tired you both must be. It makes me feel bad for complaining that I didn't get my "required" 7 hours of sleep last night.

I hope that everything works out well for you and your family and that you continue to have uneventfull weekends.

Anonymous said...

LOVE the hair and pig-tails...HOW cute is that!!!

I love you
Aunt Susan
XO XO XO XO