Here we go....

This small bottle is what we are praying will drastically change how our Elizabeth feels and how her body is able to fight infection. This tiny bottle is what we are praying will help get things back to normal.I have stayed up nights worrying about this and I have agonized over my decision to authorize this treatment and suddenly there it was, staring me in the face, that small bottle of fluid.I literally held the bottle and prayed for it to make her better.

Liz began IVIg treatment today. We spent seven hours at the hospital.... one hour of getting a line started and waiting for the delivery of the IVIg and then six hours of the iv running and another two hours of observation.
Liz did very well! She was given iv Benadryl (which made her feel so tired she was able to nap....I wanted some of it myself!)and Zofran (for rash, itching and nausea) before the IVIg was started and we've kept the Zofran going so that vomiting isnt an issue. We are super grateful that she did not have any of the severe reactions that are a possibility when first starting treatment. Liz is always in the small percentile of "rare, but could happen" and it is a blessing that she was safe and did so well today.
Within the last hour she has developed a headache, but I expected that. The nurse said her patients who are older describe feeling flu-like or hung over after treatment. For now, we just watch for fever and pray that vomiting is held at bay by the Zofran.

Tomorrow morning we have an appointment with the Hematology/Oncology doctor. I am anxious to hear the results of last week's bone marrow aspiration as it will either bring comforting news or disturbing news. No matter what, I am hoping the results will bring more information to better treat Liz. We may also get the results of her NBT labs that will either confirm or throw out the diagnosis of cgd. Blah.

Thank you for your prayers and support. I can't believe that we are walking this path and I at times struggle with how much things have changed over the past year; how much worse Liz has gotten....but just as time can bring bad, time also heals and I know that this time next year Liz is going to be better.





Liz spent her time today snuggled and playing on the computer that the Smiths handed down to her. A pink computer is so very Lizzie!
For my sewing friends- Liz received a blanket from an organization called the Joyful Foundation. If you have time and would like to donate a blanket, contact them @ www.joyfulfoundation.org. Liz's face lit up when she was handed the blanket and for many patients they are a source of warmth in the cold treatment rooms and comfort. Blankets are given to children and adults.