Bear Mail...

Thank you so much for ALL of the wonderful cards, they have been amazing to read!  Our friends in patient relations told us that Lucy backed up the system yesterday :).    Your thoughts, prayers, love, support, and beautiful words of encouragement mean so much!!!! It has been an emotional past few weeks and I have not had the time to let it all out so to speak...until...

Clarity...

Monday afternoon Dr. R came to our room to discuss a finding that one of the GI fellows brought to his attention.  The fellow spent some time looking over Lucy's entire radiology history, and as you can probably imagine it's extensive.  She discovered that Lucy's common bile duct was significantly enlarged, which is a rare but serious concern.  Not only was it grossly enlarged, but...

E-cards...

During our last admission Lucy received an e-card from friends we met here at DuPont who are in our Chronically Cool Families support group, a support group that was started by another amazing family that we met here at the hospital when Lucy was a teeny tiny baby.  Lucy loved getting "mail", she held on to that card all day. http://ecard.nemours.org/welcome.act;jsessionid=dHj2sk77FBkCCpT1kZ-S7Q** The...

An Answer to our prayers...

Be careful what you pray for because you just might get an answer, and that answer may not always be what you want to hear.   Lucy is scheduled to have an MRCP, an MRI of her liver, pancreas, and gallbladder at 2:30 this afternoon.  Please continue to pray for clarity, Lucy's comfort, and that Lucy tolerates the procedure well.  Whenever Lucy and anaesthesia come together we get...

Not much change...

Things with Miss Lucy have not changed much, including her pajamas.  She has barely been awake all day, really all week. When she was, she clearly needed to go back to sleep.  Sadly, she was not sporting the post transfusion glow this morning that we look forward to after she receives a blood transfusion.  She is the color of paste, with freckles and really messy hair.  The...

Sleeping beauty...

Sweet Lucy had a bit of a spa day today, complete with rinse-free shampoo, heated bath wipes, lotion, a blood transfusion, and an extra bolus dose of dilaudid.  We along with so many are praying for a turn around in our girl....

Some things...

I felt more rested this morning than I have in days, which is odd since I never sleep well when we are here.  Knowing that I am not the only one in charge of Lucy's care has helped to lower my stress level a bit.  I wake every few hours throughout the night and then force myself to go back to sleep for a few more,  keenly aware that I need to wake up early.  I startle easily, because...

Our week in pictures...

This is pretty much what the past week has been like for our girl.... Monday... Tuesday... Wednesday... Thursday.... Today...  I realize she is wearing the same pair of pajamas in every photo.  Pick your battles, right!   We made her good and mad tonight and changed her into clean pajamas, socks, and even changed her diaper.  Yep you read correctly, we changed...

Long Week...

I'm tired, it has been a long week of very little sleep.  Not much has changed with our girl.  Fevers are still there and she is continuing to experience pain although I believe that it would be much worse without the continuous narcotics. Labs and cultures were drawn this morning, and a nasal wash was done tonight to check for common viruses.  Lucy just plain does not feel well. Drew...

ER...

Our girl is a mess!  We tried with all our might to treat this at home but Lucy's body has other ideas.  Lucy woke early this morning with a fever, in addition to low O2 sats, and pain.  We are currently in the ER.  Please please if you would pray for comfort for our little one, and for peace and understanding for our other three little ones.  I will update lat...

Tough times...

I really wish I could be posting about something fun and frankly mundane, but that is just not where we are in our life at the moment.  Lucy is not doing well.  She is experiencing intense pain that we just can't, as hard as we have been trying, get under control.  Whatever illness that struck our little one, be it an infection or something viral,  has set off a firestorm inside...

Home...

We are home!  Lucy is not great, but there is really nothing that they could do for her there that we can not do for her at home, so we came home around bedtime last night.  We left with no real answers to why she is sick.  Cultures are still negative, which like I mentioned is not necessarily a good thing.  We took her off of antibiotics because we don't have any proof of an infection,...

Oh turkey...

These pictures are of the "messy craft" that Lucy did with Jen yesterday, they put the finishing touches on the turkeys today... too, too cute. I really have nothing new to report tonight.  We are still waiting to see if anything grows on her cultures.  It is not necessarily a good thing that nothing has grown.  We know there is something wrong, and it reeks of an infection,...

Our Day...

This picture speaks for itself...I think that she feels about as good as her hair looks. Things with our girl have stabilized, praise God.  Her temps are down as are her heart rates, but she is still just not feeling well.  I believe that the antibiotics are doing their job, her temps have come down to below normal literally overnight.  Cultures are negative, but it is still early,...

We have been admitted...

This pic was taken while at an appointment in cardiology, she picked these glasses from their prize box and then wanted me to take her picture so that she could see herself with them on...silly girl.  I have been meaning to post an update this week on how things have been going, I guess Miss Lucy decided to take matters into her own hands as she has been admitted to DuPont tonight with fevers....