June 20-21 Chicago Visit / Update

Sorry it has taken so long to post, we have had an eventful couple of weeks in our family.  On Tuesday of last week, Reilly started running fever.  My thoughts were, hey - we are leaving for Chicago on Wednesday and going to a hospital, we should be fine.  Well, Wednesday, she started with the congestion and LOTS of snot.  We made it to Chicago, beautiful weather, and NO humidity.  Her ultrasound looked amazing, shunt is patent and working properly.  There is no buildup on the walls of the synthetic material.  Her spleen is a perfectly normal size (whooohooo), her gallbladder wall has thinned to normal (it was very thick prior to surgery), her liver has reduced in size (still a little large, but very manageable), and all other organs seem to be in proper working order. 

As a treat, we went to eat at RainForest Cafe.  Somewhere between parking with the valet and walking into the restaurant, or sometime while we were in the restaurant, someone stole my wallet.  Yes, I know, NIGHTMARE.  Money, bank card, credit card, ID, insurance cards, everything.  So, after an enormous freak-out session, a long walk, and frantic calls to get my hands on funds (to pay the bill at the restaurant and get the car out of the parking lot), we made it back to the hotel for the night.  I spent much of the rest of that evening on the phone cancelling cards and speaking with the police, trying to figure out how I was going to get on a plane to get home the next day. 

Friday morning we saw Dr. Superina.  The hospital has moved to a brand new, state of the art facility, and I must say that the view from the exam room was absolutely breathtaking.  We had a great view of Lake Michigan on a beautiful summer day.  Dr. Superina is very satisfied with Reilly's progress so far.  She was not happy with the fact that he was dressed in jeans and a shirt and she asked him, "Where's your doctor clothes?"  He told her he thought he would be casual today, to which she replied, "Not even your coat?" (with her hand on her hip, I'm sure you can imagine the scene).  She WAS happy that he said she can do what she seems to be able to handle, making sure to watch any blows to her head and significant blows to her abdomen.  REALLY GREAT NEWS!

So, we make it on the plane, with WAY less hassle than I thought we would have (a huge thank you to Officer Bracken of the Chicago Police Dept. for his help with the report and for faxing it to my hotel).  We get home and Reilly seems to be getting worse, she's very congested and now has no voice and is coughing a lot. 

On Monday,  I started a new job.  Go me!  Reilly had to go to see the pediatrician because she was not sounding good at all.  Because of the fever, she was tested for the flu, and sure enough, Type B.  Lovely. 

As of today, she is feeling much better and she sounds much better.  She still has a little bit of a really nasty sounding cough, but it is loose and moving.  No fever since about Saturday, so the pediatrician thinks we are in the clear.  GIANT SIGH OF RELIEF.  We were concerned about a secondary infection and/or pneumonia, but hopefully that has been avoided. 

We made it through the week, we all survived, and seem to be on the right track.  She will follow up with Dr. Noel in a couple weeks and then back to Chicago in September.  She will have a CT scan then and pending what everything looks like at that point, she may be taken off of Coumadin and put on a different clotting medication that does not require constant monitoring (with blood work, etc.).  So far, looking good!  YAY!!!!

Please continue to keep Reilly in your thoughts and prayers.

Chicago this week....3 months post surgery tomorrow

We have had a very busy past few weeks...and we survived the dance revue!  Reilly thoroughly enjoyed her first ever dance revue, and made it through without incident!  She has been hanging in there, all things considered.  Her bloodwork has been relatively stable, with minor fluctuations.  We will be back in Chicago Thursday and Friday for her 3 month follow up!  I cannot believe that it has been 3 months already.  I am so thankful that as of now, we have had no major issues.  I'm happy to make it through the day without a nose bleed!  I will post after her visit with the results of her ultrasound and exam. 

Please continue with the prayers and support.  They are much needed and deeply appreciated.  Love Always!

Update

On May 30, Reilly saw Dr. Noel for a follow-up visit.  Her blood work was mostly good, her ammonia levels are still high - but at a safer level and being managed with the lactulose.  A few things are either high or low, but are explained by either her medications or effects of the surgery.  Baby girl grew a little over an inch in 6 weeks!  Sprouting up like a weed!  She has not gained enough weight though, less than half a pound.  Now we are working on putting weight on her frame through diet. 

Yesterday, we participated in the Children's Hospital Telethon and Reilly had a grand old time on set.  She was very excited to be a part of the event and also voted herself the cutest kid on the telethon!  Not a shy girl at all.  It was such a blessing to be a part of such a meaningful event.  Without Children's Hospital and Reilly's doctors there and Children's Memorial Hospital in Chicago, I'm not sure that she would be around to be able to participate.  For that reason alone, I will be forever indebted.  We are fortunate in so very many ways and it is nice to be able to do a small part in helping to give back. 

Reilly has a followup in Chicago at the end of June and then we see Dr. Noel again in July.  I am pretty sure we can handle one doctor visit per month.   Let's pray that things keep going the same way and there are no complications! 

So, Happy Summer, Happy Hurricane Season, and continued prayers of health and healing!  I'll keep you posted!

Oh, she will have her very first dance revue in 2 weeks - which should prove to be very interesting.  Anyone who knows me will understand that I'm not really a "dance mom" and this whole dance revue thing is definitely a trying experience for me.  Reilly, however, is a rock star and can apparently handle it all, with a smile!  I'm taking lessons, let's hope they pay off!