Tuesday, March 15, 2011

Rough week and BIG NEWS!

   It's been a while since my last post. Sorry for the wait on a "Daylon Update".
  So the good news is Daylon has been meeting his nutritional goals everyday this last week!! Yay! His weight is up to 11.45kg, so it's slow but steady. :) We are so grateful to have this worry begin to peel away. He's still not interested in anything by spoon but we're all about baby steps!  We are also so grateful to have so many wonderful people praying for and thinking of Daylon everyday through this trial.
 I wrote the paragraph above a few days ago.
March 13th-

     Daylon continues to eat through his squeeze bottles and I'm happy to announce another break through!
     Thursday night we were celebrating a birthday at home and I decided to set some cake on Daylon highchair tray to buy some time to serve up the kids a dish while Daylon "colored" with the frosting on his tray. About two minutes later I turn around and see this....

    Holy smokes! We all just sat there laughing at this surprising little miracle. You know, it would be cake that finally break this stubborn guy. He is his mother's son. :) The cake was just the beginning. At almost every meal he will feed himself a bite or two of food that we on his tray. The trick is, he HAS TO do it himself or else he refuses. I think after the smoothies of avocado, butter and french vanilla flavored Suplena (kidney failure milk) he had lost all interest in eating food outside the realm of his formula. Whatever it was, I'm hoping that this is where he can finally lose the caption on the front page of his chart, "suffers from malnutrition".


     Outside of eating, Daylon has had a really rough week and a half (resulting in a mama with no time to blog). The skin on his face and chest has been tearing like tissue paper. Although this may seem like a step back, the good news is that the sores are scabbing up fairly quickly. The bad news is that once they the scab, they itch and he scratches. Some of the sores are pretty deep and are a challenge to keep from becoming infected. A week ago Friday we went to clinic and Dr. Buchbinder and I talked for a while and decided that Daylon's hair needed to be cut off. The sores on the top of his head (on his scalp) are really deep and oozing quite a bit. The dampness from the puss (sorry, I think that's such a gross word) made his hair on the parameter of the open sores lay down and stick over the top of the sore. That area wasn't really able to heal up because of it and increased his risk of infections. The increasing number of bald spots helped to make the decision easier. :) I couldn't use an electric razor to shave his head so he's not completely bald but have such short hair certainly is helping the healing process.
   Daylon has been suffering with his eyes. Since the last post, just wants to be held and sung to ALL. DAY. LONG. With four other kids to tend to, it's been a real blessing to be staying with my parents on weeks like this week. Dialysis has been a full on nightmare at times. He's been too miserable to sit through 4 hours of sitting still. By the time we leave he has blood running into his eyes and fleshy patches on his forehead and chest. Two days ago he started opening his eyes more regularly and playing again. As long as we're close (like within a couple feet) he's okay to play for short periods of time throughout the day.
  One cool bit of fun we had earlier this week is that Erin, Daylon's nurse from Minnesota came down for a visit! It was SO fun to see her! She is such a sweetheart! She is absolutely amazing with not just Daylon but all the kids. The kids remembered her so they wasted no time chatting it up and playing around. We are so excited to see her again this Summer!

He's awake, he just couldn't open his eyes on the day she visited.

March 14-

HUGE NEWS!!!!!!!

Daylon is done with dialysis!!!
We went in today so he could be dialyzed and the doctor was there waiting. The three Nephrologists feel that Daylon is no needs dialysis to sustain life. We will visit the clinic weekly for labs and if after a couple of months his creatinine and BUN have no increased than his Hickmann line will be removed! I can't WAIT to get that thing off him! I am overjoyed right now! I can't even tell you what a huge blessing this is! It has been so hard to go through the transplant and watch his disease improve but have the affects of the chemo ruin his life. It felt like he was suffering so much just to trade one problem for several others. It just feels like this ginormous weight has been lifted off our shoulders. As the doctor talked my eyes filled with tears of happiness that this day has finally come. His BUN and Creatinine are still elevated but his kidneys will probably never perform at 100% after the months of trauma that they've been through. He will still have to stay on his special renal diet (low minerals, especially potassium, and protein) for now, but some of his limitations may be lifted after time. I know that he has been blessed to over come obstacle after obstacle because he has so many wonderful people praying for him. Please continue to pray that his labs will stay down and he remain off dialysis.
  We are thankful for all of your support! Go Daylon!
On Sat. my mother-in-law took our three girls and my niece Aleyna to a Disney Princess Tea Party in Norco. They had SUCH a blast! Check out these cuties!


Sara said...

It's amazing how much your kids look alike when you put them all in one photo. And the girls look so pretty in their princess dresses too!

I'm glad Daylon's done with dialysis, that's such a huge step forward for him. I'm sorry that his eyes have been bothering him and I hope they improve soon. I'm 21 and I had a corneal abrasion last year and I was a whiny, grouchy, mess so I can only imagine how Daylon feels.

Also, way to go Daylon on the cake little man! That's awesome! The photo of him smothered in cake is just too cute for words.

sharon kaye said...

Thank you for sharing the good news. Yeah, one more hurdle you have overcome.
I love the pretty princesses. They are darling.

Linda said...

Hi Jenn: What great news about the dialysis. You must be thrilled. Daylon looks great, sitting there playing with his toys, he looks so much older.
Great pictures of the girls in their princess dresses. They are adorable.
We have great news too. Meg is pregnant with another little girl and EB FREE. We are all sooooooo happy. Can't wait until I can hold my new granddaughter. Take care and Keep the Faith. Love and Peace Leah's Nana

Kim M said...

YEAH FOR DAYLON!!!! NO MORE DIALYSIS! So, did you tell him he can have his cake and eat it too??!! ha-ha Isn't it amazing to watch how far he has come from those days in PICU after the stroke!?! You ROCK Daylon!!

Prayers of thanksgiving as well as continued prayer for his nutrition, eyes and his development!

Thanks for the update - I was needing a Daylon fix!!

Praying from Waterford, Michigan
Kim M

Amy F. P. said...

That is wonderful that Daylon is off dialysis! I'm so glad that his appetite has improved too. Olivia had remembered to pray for that every night so I will have to tell her the good news.

Happy late birthday BTW!!!!

Anonymous said...

So wonderful to hear that Daylon is off of Dialysis and that he is eating better. Maybe you will have to give him cake everyday.The picture of him with the cake all over him is so precious. He is such a strong little trooper and so amazing. What A True Miracle! The girls are really true princesses and the pictures are so adorable. You have the most beautiful and loving kids. They are such a pride and joy. We really love them and can't wait to see them soon. Hang in there Daylon! Our Thoughts and Prayers are always with all of you, and they continue. Take Care and give the kids a big hug and kiss for us.

All Our Love;

Myrna & Dwight CA

Amber said...

My kind of boy...going for the cake like that. Some very big milestones you guys have reached..YAY!!

Mom to Many said...

That is amazing! The eating break through I mean. I am sure I told you my little preemie boy had to think he was stealing food to be willing to eat. (I would leave it on the bench and walk away.) Funny kids.



Anonymous said...

Oh how happy to not have to go sit dialysis. And to have Daylon eat by himself. His skin my look ruff right now, yet this too will change. So happy to see prayers answered. Thank you for sharing this journey. sg-KS

Mom to Many said...

One more thing... What a gift. I am so happy to see him doing so well!
And I thought I recognized his Nurses familiar face. :o)


Annalien said...

What pretty princesses!

So very thankful with you that Daylon is off dialysis! I will pray that his levels remain acceptable and also that his skin heals well. I am sure with him eating better, his skin will also improve.

God bless you!

Jennifer Dean said...

Hi Jenn,

I'm so happy for little Daylon coming off dialysis! I think about him and wish you and the family all the best! I love seeing the happy news and hope to see more and more of it. :)

Take care,
Jen Dean

Gilda said...

Yay! for no more dialysis I will continue to keep Daylon in my prayers. Thank you for all the updates and love all the pictures.

Jamie said...

YAYAYAYAYAYA!!!!!!!!!!!!! God is AWESOME and Daylon and your family are in our prayers \o/

hurray! PRaise God!