2 months post surgery

Well, Reilly has made it two months post surgery with little to no complication!  Huge sigh of relief here!  She continues on anti-coagulation medication and she is on meds to try to bring down her ammonia levels.  She goes for a checkup with Dr. Noel on the 30th, so we will know more then. 

Currently, Reilly is in Texas at her Meme and Granddaddy's house, riding her bike (yes, with the ladybug helmet) and swimming All Day in the pool!  She was very concerned about being able to go swim.  I'm sure that her grandparents are thoroughly enjoying some one-on-one with her too.

It is entirely amazing to me that such a small person can be such a magnet and bundle of energy.  She has been through so much and it doesn't seem to faze her.  Not even a blink of an eye for bloodwork.  I have found that as long I give her a head's up about what is going on, it's a piece of cake.  I am VERY thankful for that. 

We are going to participate in the Children's Hospital Telethon again this year and are very excited!  As soon as I know when we will be on the schedule, I will post. 

Reilly has been getting ready for her very first dance revue!  We survived (more like I survived) the pictures, which is madness.  I really am not sure that I am cut out for the madness of dance revues.  Reilly is enjoying herself, so that's what counts and makes it worth it. 

We have lots going on to keep us busy.  She has to return to Chicago in June, then again in September, December and then again in March.  We are not certain about how often or any times farther out than one year post surgery right now.  She continues with her bloodwork (hopefully every two weeks now) and will do so as long as she remains on blood thinners. 

Please continue to pray for health, healing and happiness! 

Update

Reilly is 7 weeks post surgery this week.  Things seem to be going pretty well.  Her ammonia levels are still elevated and she will begin taking medicine to try to bring those levels back down.  Her clotting times continue to fluctuate, so the weekly (or sooner) bloodwork will continue.  We follow up with Dr. Noel at the end of the month and will be back in Chicago June 21.  Hopefully things will settle down soon. 

On a lighter note, Cole was named Student of the Month for April - which is fantastic.  We are all so very proud of him, especially since this school year has not been anywhere near normal and he continues to do remarkably well in school.  He is a RockStar in his own right! 

Please continue to keep Reilly in your prayers, only God can know where this journey leads.