Not Bouncing Back

We had such a wonderful Holiday with Teresa. It was my goal to have her celebrate her Birthday and Christmas at home and feeling well , and she did. She had a fantastic day filled with so much excitement. Then the day after Christmas she started with a fever. The fever (103.5) lasted for 4 days . We had many trips back and forth to the Doctors and luckily avoided a hospitalization . This virus like all the others has taken it's toll on her little body . She is still VERY tired , requiring 2 naps every day and she is asking to go to bed every night at 7.

The Doctor warned us that she would have a slow deterioration of her health .
I am really praying it is just this one virus hanging on and will leave her little body unharmed and back to her base line very soon .

We are scheduled to return to CHOP on January 14th.to see if she has had any improvement in her heart and lung function from the medicine. Please pray for some improvement ,any improvement would be so great!

It never seems like we have a dull moment. Last week Emillia decided she was going to run through the house with out using her walker and ... you guessed it , she fell and cracked the top of her cast. After many hours spent at the Hospital, she was re casted . Luckily nothing was broken . She is so anxious to be able to wear her new shoes she got for Christmas.

Gemma had her blood transfusion today and did very well. Unfortunately her Ferritin levels are still dangerously high . She is scheduled to have a Ferrascan (High tech. MRI) done on January 18th. This will tell us how damaged her liver and heart are . Last year it showed her liver was becoming very damaged from the excess iron build up . We are hoping this scan will show some improvement.
She is still doing ok from her daily infusion except for the fact that she cries so hard before each one. We are going to start using a numbing cream to try and alleviate some of her anxiety from the pain .

Lucy is scheduled for surgery on January 21. She was born with a solitary kidney and has had a large reflux from her bladder into her kidney for several years. In an attempt to save her kidney from further damage she will have surgery to correct the reflux. We are praying all goes very smoothly with out any complications.

So there you have it . Never a dull moment at The Bartlinski House. Oh I forgot to mention ,we are moving Alex to The University of Alabama this month also .
I am tired just thinking of what we have to do this month .

Praying for spring to come soon .