7th Scope / Banding

At her last clinic visit, Reilly's blood ammonia levels had significantly decreased.  Needless to say, we were very excited about that.  Then, our family participated in the Children's Hospital Telethon, which raised over $1.7 million for Children's Hospital New Orleans!  It was definitely a neat experience and we hope to be a part of it again. 

Today, Reilly had another scope and had two bands placed.  She did have an active bleed (a very slow one, but definitely fresh blood) this time.  She is spending tonight at Children's and we will go home in the morning if things progress as usual.  She is sleeping hard right now, and snuggling her stuffed monkey, but appears to be doing just fine. 

Thank you all for keeping us in your thoughts and prayers.  I will update as things happen, and they seem to be slowing down a bit (thankfully), but we still have an interesting road ahead.  She will have a MRV (venogram) within the next couple of weeks, and bloodwork and clinic visits and all that good stuff.  SO, that's it for now! 

Clinic Visit and Bloodwork

Yesterday Reilly had a clinic visit and bloodwork.  The clinic visit went fairly well, or as to be expected.  No really significant change, her liver is not quite as enlarged (YAY!), but still enlarged; and her spleen is now somewhat enlarged (BOO!), but that is apparently a normal thing.  Dr. Noel will monitor the spleen very closely because serious problems can develop from hyperspleenism (I think that is how you spell it).  Her medications will remain the same for now.  I am working on scheduling the venogram (which will be performed at Tulane) and Reilly is scheduled for her 7th Scope and Banding next Wednesday.

Don't forget, our family will be interviewed during the Children's Hospital Telethon on Saturday, June 11 at 6:15 p.m. on Channel 6 / WDSU.