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Posted 2017-08-25T05:56:00Z

August 24, 2017

Jayla is such a rockstar! She is doing an amazing job. #JaylaStrong 馃挭馃拋

We had a great report this morning, as Jayla's labs are looking great. Her numbers are within the correct limits, actually good enough that once again, she did not have to have dialysis again today!

We will continue to do blood work in the mornings and the results will determine whether or not she will have dialysis.

She has been trying to eat what she can, which isn't very much, as she is still being fed by her tube, but her doctor said this morning that if she can work hard to eat more, maybe her feeding tube can come out. This may happen once he feels that she can maintain her nutrition by eating all food by mouth, as all IV's are out. She has been on a strict diet to control the amount of phosphorus, potassium and calcium she has been allowed. Her team felt this morning that because the levels are looking good, she is now free to eat whatever she wants! Woo wooo!!! Once she has her tube out and appetite back, I'm sure it will be more exciting to try more foods and drinks again.

We are still having a problem with medicines making her sick. The more medicines we can take away, the better off she will be.

Jayla's heart rate is slow and steady, and she remains on blood pressure medicine. It is not unusual  for kids with kidney failure to have high blood pressure. We still have to be careful and only give her the medicine if we know we are not doing dialysis. If she takes it before dialysis, her blood pressure will get too low and we will have to stop early.

Output was 1200mL today! 

Jayla was so excited this morning to hop out of bed and walk over to the window to look out over Kansas City, and to watch the pigeons below our window. She really got a kick out of watching them and it was great to see her smile. When she gets out of bed, we have to slow her down from trying to run away too fast, as we have to follow behind her with the IV stand that holds her feeds.

So I posted an additional picture at the top of this page. A wonderful woman offered to draw a caricature of Jayla for her this evening! We were so happy that she did this for our girl and the woman was AMAZING! And SO talented! It literally took her 5 minutes and she was completely finished with the drawing. This restores faith in knowing that especially in today's world, there are so, so many good people out there. So many volunteers here that only want to brighten the day of these sick kids for nothing in return. Maybe, maybe a smile. Living in a small town, we see good deeds all the time and try to do good deeds ourselves the best we can. Especially in a big city and hospital with so many sad situations, these volunteers really make such a difference. It is quite humbling. And they do make a difference. #BeTheGood

The lab results will let us know what we are doing tomorrow and we are so happy with her progress just from today. 

Thank you for all the prayers. We believe - and believe that your prayers are working for the improvements she has been making. She is getting stronger every day.

Thank you prayer warriors!

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Comments (14)

  • Alison Steinlage
    Alison Steinlage

    The power of prayer is amazing! Keep up the good work Jayla. Continued prayers for you all.

    2 years agoReply
  • Michaela Schultejans
    Michaela Schultejans

    That is wonderful that she got to go without dialysis again!!!! Way to go kiddo!!!! So thankful she is IV free too. I'm sure it is easier for her to move without stuff stuck to her everywhere! Praying for a great appetite and regulated blood pressure & heart beat!!! What a strong little lady!!!! Praying that the days continue to have more ups than downs!! 💕🙌🏻👊🏻😊 Hugs & prayers!!!!

    2 years agoReply
  • Brandy Weber
    Brandy Weber

    How awesome is it she is up moving around and starting to feel so much better. Keep it up Jayla!

    2 years agoReply
  • Amy Adams
    Amy Adams

    I hope she wakes up with a long list of foods that sound good to her 😊

    2 years agoReply
  • Angie Kramer
    Angie Kramer

    Suzie and Jeremy things sound like they are really improving - that is great news. We will continue the prayers for a full recovery. The drawing is very good. Prayers that you are all getting some rest.

    2 years agoReply
  • Elaine Hageman
    Elaine Hageman

    Love the drawing! But especially the good progress report! Hang in there. The light at the end of the tunnel is getting brighter! Love and hugs!

    2 years agoReply
  • Micki Nolte
    Micki Nolte

    This is such wonderful news!! Way to go Jayla, we are so happy to hear all the accomplishments you are making. Love from all of us!!鉂わ笍🙋🙏

    2 years agoReply
  • Tammy Schmitz
    Tammy Schmitz

    Way to go Jayla!! So glad her numbers are improving...praying this continues! Praying that her stomach and appetite will keep improving....with no vomiting! Love the caricature, adorable! Love & prayers!

    2 years agoReply
  • Amy Beck
    Amy Beck

    Wonderful news!!!

    2 years agoReply
  • Shirley Claas
    Shirley Claas

    Awesome job Jayla! Keep it up!! Hopefully the sickness after meds will get less & less & we will get to see you at home soon!!! Hope Anchors the Soul!

    2 years agoReply
  • Angie Lourance
    Angie Lourance

    This is really great news! We have loved reading of the great progress you have been making Jayla! Keep up the good work!

    2 years agoReply
  • Sara Knowles
    Sara Knowles

    thank God! 1200ml is so good. praying for you all.

    2 years agoReply
  • Courtney

    Love the pic and hearing of her forward progress! Tell mom to get you some good snacks ;)

    2 years agoReply
  • JoAnn Ronnebaum
    JoAnn Ronnebaum

    Love to hear the good news about Jayla! Hope she'll soon be off dialysis and back home and in school! She's a trooper!

    2 years agoReply