Monday, January 23, 2012

1-9

Precious little Lydia had a rough night and has been having a not so easy day. We're pretty sure that her throat is just inflamed from being extubated and that the crying fits she's having with her hoarse little voice are not helping to relieve the irritation.  She's taking in enough oxygen and her air exchange within her lungs sounds really good.  It's just a sad little sound she makes when she breaths and an especially sad sound she makes when she's crying...that is if you can hear her while she's closed up in her giraffe bed.  She was given Ativan last night to help her rest and it helped a good bit.  It helped me rest too knowing that she would be able to sleep.  When she woke up she still sounded bad but not as bad as before her rest.  She has gotten 2 breathing treatments and may be getting another one soon.  they seem to be helping a little bit too. If she has to have too many more they'll put her on some steroids to take care of the inflammation. Dr Goodwin-Sampson also brought in a CPAP machine just in case...she said it was to intimidate Lydia into breathing right so she wouldn't have to be put on it....so far it's working!

Penny is doing relatively well. She's still having de-sat episodes but the doctor says it's not at an abnormal rate.  She also just finished up her second blood transfusion which should make her feel much better.  Being that she can't make more blood (for a few more weeks anyway) to replace what's being taken to test blood sugars....she was starting to look a little pale.  She looks better in a nice rosy pink!  Penelope also has been following a pattern since she started on her insulin of having blood sugar drops at the second hour after her shot.  Today the endocrinologist suggested that we skip a dose and see how she handles it.  This could be the first step in weaning her from the insulin.  This would be a HUGE answered prayer.  And we know we have had no shortage of those!

On a non-medical note, Jonathan and I had a realization moment as we sat and ate our lunch today.  Our lunch was not the not-disgusting cafeteria food. It wasn't even peanut butter and jelly.  It was delicious salads from Panera brought by some precious friends.  To my left there sat a bag with the extra food brought by them and an adorable bucket full of all kinds of goodies.  Movies, gum, candy, popcorn, lotion, stamps, dental floss, nail polish...anything we could want!  To my right were two beautiful gift bags full of adorable clothes and precious bath towels for the girls from another friend.  The entire table was covered in very tangible representations of the love and support that has been poured out on us.  Of course there are many other ways that people have been loving and supporting, namely through prayer.  But seeing this table covered up, was a visual reminder of all of the prayers and thoughts and website checks and calls and texts and facebook messages, and meals, and offered meals, and many other ways that God is showing us His love through the hands and feet of other people.  It's a very humbling thing.  It's something I hope I never forget.  Thank you all for being willing to come alongside us on this crazy journey.  Thank you for caring for us and our daughters.  Thank you most of all for your prayers that are being answered everyday with every breath that Lydia and Penelope take.  Even if it does irritate their throats!

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