Spring Flower!

Our little Flower Child....

Spring has almost SPRUNG ! And we are happy to say Mad Belle has gone nearly 4 months without a hospital stay...PRAISE GOD!

Some brief quick updates---

Both Mom and Madeline are 100% complete with transplant evaluation- Now it is just a waiting and seeing game.. Many friends and family members have asked 'WHEN' - but the truth is that we still have to wait and see how she does... The doctor's feel like she is currently STABLE (no hospital stays, meds working, not sick all the time) - so why push her yet if it isn't necessary? Mom is a bit more eager to get going.. knowing how quickly Madeline deteriorated in December (almost going on dialysis) and fearing that possibly happening again- we certainly don't want it to get that bad again? So for now we check in monthly- Monthly Blood Draws/Labs- Monthly Nephrology visits- and determine her current status- When the time is right to schedule the transplant we will go through nearly all the tests done in the evaluation AGAIN a month prior to scheduled surgery and make sure all is on the up and up.. this could be 2 months from now- 8 months from now- a year from now- Who knows- Only God- So for now we wait- be thankful for her current good health and time away from hospital and be PATIENT with God's timing- I can't speak for Dad but that is the hardest part for MOM- NOT knowing WHEN~! So much is up in the air-

We are currently going through education sessions to learn how life will be post transplant and it is pretty overwhelming to take in at once- We will have to be very careful with visitors and outings the first six weeks- lots of follow up care and recovery for both mom and Madeline -and also a very strict med schedule ( cannot be more than 20 minutes 'off' or it could cause her body to start 'rejecting' the kidney) even the blood draws have to be scheduled a certain time after meds are given- it affects things you don't even think about like "can we have pets?" "traveling vs med schedule and blood draw schedule" -- her immune suppressed state... risk of infection


We also recently took her to ENT -(ear nose and throat ) Dr. to see about her chronic cold- (literally more than 6 months straight) -we were thinking maybe she had allergies- but it turns out she has enlarged adenoids (click underlined for more info) anyways they are in your nasal passageway area and hers are so large they block 3/4 or her nasal canal- as well she has ENLARGED Tonsils - so combined these two things cause an issue with breathing at night (she will wake up with apnea episodes..stops breathing due to blocked airways)- and also has so much snot because the stuff that regularly would go out your nose is getting stuck and then infected from building up in there.. SO we will try nasonex (a nasal spray) to try to shrink the adenoids -apparently this works 40% of the time- if it doesn't she will need surgery- which they would like to do before her transplant- either way they do not want the issue to persist post transplant because continuing to get the infected adenoids will cause a bigger problem when she is immune suppressed.-- We will check back with ENT in june to see how they look... No word on if we need to remove tonsils or not- This makes sense then why she has been extremely adverse to eating (not having clear passage ways coupled with nasal drip coming down your throat would deter anyone from eating)- So perhaps if we can get this cleared up she will want to eat? We did get her to try a piece of strawberry the other day.. she chewed it and spit it out- same with the bacon- she seems to like the taste but is unable to swallow-- it's a sensitive game- hopefully one day things will get better


Other than that Madeline is doing well- talking lots- singing - she loves to sing "up abo- so high" (twinkle twinkle little star)- runs faster than mom and dad can keep up with- constantly pulling any kind of pony tail out of her hair we put in -and VERY strong willed- wonder where she gets it from :) -- She is quite the personality but boy do we love her- we are so blessed to have her-

Sending love and blessings everyone's way! here's a few more recent pics -including easter!