11 mos and 2 days old!

Good Afternoon Everyone!

 Well I said it once and I will say it again- there must be something about Tuesday's because yesterday (Tuesday) Madeline wound up back in the hospital..

Let's back track for a minute and explain that Madeline went home friday night-(the 1st)- We thought for sure this time she would stay out because the weather was not that warm and surely she could not sweat herself into dehydration again with the cool weather (right?).. Well that was sort of correct---

Again we had an AWESOME weekend.. Caught up with old friends at a wedding, worked on some much delayed house projects, volunteered at the Bellaire Puritas Arts Festival (she loved the blue grass music!) - then hopped on our bikes and took a ride from the festival deep down in the metroparks.. we let her play on a blanket and she was so happy -clapping for no apparent reason other than enjoying the sun on her face and the wind in her hair. In the solitude of the metropark, surrounded by love that moment felt beyond perfect and all the stress and pressure just seemed to melt away into the distance. All that mattered at the moment was our happiness and basking in the beauty of nature that God designed..

Sunday night she started having bouts of diarrhea and woke up several times in discomfort.. monday followed with more diarrhea and bouts of puking, on tuesday morning we decided to take her to the er just to prevent having to admit her- thinking we were ahead of the dehydration this time. Well, mom went to work and dad took boots in to be checked out and they decided to give her two boluses of fluid. They were amidst getting ready to pack here up when she continued to have a huge output of vomiting (despite not having had anything by mouth that day ) as well her heart rate was high (around 160) and wasn't going down.. so back up to Rainbow 5 she went where she was admitted to get her heart rate down and to get her back to baseline.

Plan for today and here forward is as such.. we are going to try a new medicine that will actually work to keep her from urinating as much (part of her problem is that she releases too much which does not help when she is already having diarrhea and puking). The doctors are thinking that if they can keep her from releasing so much urine that her getting dehydrated will be delayed (at least this might work until A. we go to Columbus and figure out if she has a gut motility and if anything can be done about it or B. she gets a new kidney)- Hopefully A. or B. will resolve the puking issue which seems to continue to bring us to these weekly hospital stays..

Madeline continues to hold up well although yesterday and today she has been awfully crabby and just not herself.. we are hopeful it is due to lack of sleep (has been up much of the night in pain we believe).  Mom and dad are disappointed of course but anxious to get to columbus and hope we get some answers there. So - in the meantime we stay 48 more hrs and hope that this medicine works -if so ideally she would be released friday night.Aunt Sarah and Uncle Dan are coming to visit from Delaware due to arrive late thursday so we are really hopeful she will be able to get out and enjoy spending time with them.

As frustrating and tiring as this all is- this time feels different.. Last week mom felt pretty beat down about the whole thing.. tired of admissions and seemingly no answers- but through a lot of thought and prayer is working hard to keep a positive attitude and accept that this is her life right now and eventually (though not in the time we would prefer) she will hopefully get out of it and get to do more than just vacation at home on the weekends. Having the past two weekends relatively stress free and enjoying time as a family has really helped with this and put things into perspective. You truly have no idea how much you cherish the simplest things until you are in a situation like this. Sleeping in your own bed or getting to take your kid for a walk outside seems like you have won the lottery when you spend most of your days between work and hospitals. Being around other families here who haven't even had as much opportunity to go home and have those walks, or push their child in a swing..one little girl we know at this point can barely wear clothes because of the body vest she has to wear as a medical necesity - really puts things into perspective. Guess we just needed a gentle reminder that we are not the only ones going through this!!

See below for awesome pic of maddie and mom having fun on their vacation home this weekend. We love this little girl so much- sometimes it just feels like my chest might burst open pouring out love and affection on this sweetie- sometimes I want to hold her and never let go- She is our everything! We are so thankful to God for the blessing he has given us, as well , given us in all of you.Thanks to all the wonderful friend and family and extended friends and families and strangers continuing to support us! God Bless!