Surgeries..Sit ups...Surprises- Oh My!

Good Evening All
 If you haven't heard already -Madeline had a short visit back in the hospital this weekend!!
What we thought would be a routine procedure turned into a quick surgery!

Madeline was scheduled to go to her surgeon to get her Mickey button (this is just like her g tube but instead of having a tube hanging out all the time there is a little 'button' that is flush to her belly where we connect/disconnect a tube that will be used at feeding times-a much better idea then having a tube hanging all the time where she could rip it out/it could get caught on something/etc). Well her dad took her to her appt and they let him know that they would have to put a temporary tube in while they got the size of the mickey button that they needed .. so she would have had the temporary one until she got the permanent one ordered.. however- the temporary one was placed and it kept leaking- so the surgeon had her sent down to radiology to check things out.. turns out the tube was not in the 'tract' where it was supposed to be. The idea is that the gtube (or foley tube) is placed for 6 weeks or so (madeline's was in for 8 or 10) and scar tissue forms around the tube creating a 'track' or 'tunnel' - but when madeline's temporary tube was placed that tract could not be found.. they tried several more times to place it.. but could not find the tract so they decided to go to surgery to place a scope down her throat to look for the tract..so needless to say mom and dad were a bit surprised - ..she was taken to the OR friday night and they were able to successfully find the track but it appears that scar tissue never formed for her which was a bit unusual. Surgery went well but they wanted to keep Madeline over the weekend to make sure no infection happened since the temporary tube was in the peritoneal space (not intended). So -we vacationed at the hospital this weekend :) - Madeline seems to be ok - she was very crabby the first day but got better after that.. and some pain meds.. she was holding her mouth open the longest time and wouldn't eat but we think it is because of the scope that was placed down her throat during surgery-- she is mostly better now. .the only abnormal thing is that she has been puking more than normal.. hopefully it will all resolve itself but we will keep an eye on it. .we are so proud of our brave little girl!

In other areas Madeline seems to be doing well- The nephrologist is very happy that her labs have been coming back well- all her numbers are maintaining well - her head has grown as well which is great as they were previously concerned about it- she has gained weight and is in the 25th percentile which is unusual for kids with her kinds of problems. They mentioned if she is still doing this well when she is 20lbs (the weight that you are eligible for a transplant) that we may be able to wait a bit before doing the transplant.. so all quiet on this western front!!

Madeline recently has been sitting up as well as is talking up a storm saying 'da da and ga ga ' etc.. she LOVES to talk .. just like her mom ;) .. it's amazing what a happy calm girl she is for everything she has been through.. still not rolling over much but hopefully that will change with her having the mickey button...

Madeline took her first plane trip to see her aunt Sarah get married two weeks back and she did great! it was Aunt sarah's first time getting to hold Madeline so it was a joyous time for everyone (see pics above) both aunt sarah and madeline looked fabulous !

So as usual things are a little crazy but overall good.. and as usual we are so thankful for the continued protection around our family- praise God!

Thanks to all and we hope you are all doing well too !

 God Bless!