Poor baby!! And you too. Prayers going your way. HUGS

Well after our busy day at the doctors we are home!
We got a referral to the pulmonologist from her pediatrician that appt is set for the 8th. Her doc is concerned that she had atelectasis and wants that followed up with pulmonologist and a swallow test to make sure she is not aspirating. At the orthopeic oc he diagnosed her with congenital pseudoarthritis ( sp?) which he tol me it was extremely rare. As far as the focal mesodermal dysplasia he had no clue what that was and so he is calling down to the radiologist at Children's to talk with him. He is assuming it is either an underlying syndrome of some sort or maybe a chance it is the same thing he is talking about with different words. But he does not think it is the latter. So I will find out by the end of the week what it is and who I need to see for it.
And her eating is still low, she has only had 13 oz since 6:30 last night. I called her infectious disease doc and he wants to see how she does overnight, so we will be talking in the am. He knows it is not the formula and it is quite evident to him that it is not the meds causing it ue to her being off them now for 24 hrs. He does not know what it is an seems frustrated and concerned more so than in the past. Thankfully she is still having wet diapers!
With the pneumonia I always knew what was happening and now I dont know and the doc doesnt know, this time I am much more worried! This has been going on for a week today.
Thanks for letting me vent my concerns and her health issues!!!!!

Thank you for the update. I hope they can figure things out soon, and I will keep you all in my prayers. Hugs

Sending thoughts and prayers your way. I hope they find some answers and help for little Lily soon!:love:

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~Jenn~

Jessica, thank you for the update. Wow. May you have all the strength you need and more. Sending up more prayers. Of course, vent all you want - we're here. A lot of it goes over my head, but I know a scared mommy when I see one. I'm praying your Lily and Artie's Lily both get on the happy, healthy train so they can meet some day and play!

I wish I had words that would make you feel better. Just know that you have friends thinking of you and are praying for you all. Good vibes to you:

Is there anything at all we can do?

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Sending more prayers for you and little Lily!!! I hope they can figure out what is wrong, so they can figure out what to do! How frustrating!!Hugs

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~Happiness is a large family~

I actually did get to meet Jessica & her Lily last week while they were in the hospital! Too bad we had to meet at the hospital, but it was so nice to finally put faces to the names.

My Lily is actually doing pretty well right now, so I'm thankful for that.

Jessica, still thinking of you. You guys are going through so much! I'm glad it sounds like the doctors are doing more. Did you see Dr. Zeleske (ortho) at Children's in the tower? That's who we saw when Leah broke her leg a couple of years ago. I thought he was very good. Also hoping between the pulmonology group and all the other docs, that they can finally get to the bottom of things. You're in my thoughts and prayers!

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Thank you for the update on your Lily, Robin. I'm so glad to hear she'd doing so much better! Right after I read this thread today, my little diva walked up to me with a frisbee and ball asking me to catch. You better believe I dropped everything right then and there, inspected her, and played catch. Oops. Now she's in her brother's Bionicles, saying, "Pieces, pieces."

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My thoughts and prayers are with you and your familyHugs

My 2 year old and I will be putting your family in our prayers tonight!:love:

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Mommy to Bryce 2/20/2005 and Skye 3/4/2008