Friday, December 31, 2010

Day + 185 MERRY CHRISTMAS!

  I hope everyone has had a Merry Christmas and is enjoying this holiday season. Life for us has been crazier than we can keep up with. First off,
 
  WE'RE BACK IN CALIFORNIA!!

California Christmas! Palm trees get in the Christmas spirit too!
 
  Dr. Tolar, Dr. Stephanski and Teresa worked their butt off to make sure that we were home in time for Christmas and that is something that I think I will always be grateful for. I told Brian and the our families that Daylon and I would be in on the 23rd, but Teresa had worked out our appointments at CHOC to be that day so we flew in on the night of the 22nd. I found a $15 rental car (thank you Priceline.com) and Daylon and I drove home from LAX to surprise everyone! It was so great! We flew in at 11:05pm, so by the time we did the whole baggage claim and shuttle to the rental car place and then drive home, it was 2 am. I know. LONG day. Anyway, everyone was sleeping and we just stood in the hall calling out until people woke up! So fun! You should have seen their faces! Brian actually ran across the bed! Ha! Kodak moment and me with no camera! Figures!
   The transition from Minnesota to CHOC was completely taken care of the staff up at the U of M which was nice. We knew when our appointments were and where to go. Since we've been here, it's been a hard adjustment but I think that has a lot to do with my lack of ability to handle change. We just left the top hospital in the US for bone marrow transplant and the doctors here is very open about how things are going to be different. Daylon's newest doctor to the team is Dr. Buckbinder. He's a very friendly man and seems to take a great interest in Daylon which I appreciate. Dr. Vega is the Nephrologist here in CA and will be taking care of Daylon's kidneys. She seems pretty nice but not as interested as I had hoped in talking with the docs from MN about Daylon's past. In MN, Daylon was listed as an Acute Renal Failure patient (meaning that his kidneys are temporarily failing) and a full lab panel done with each dialysis. We always knew everything from his BUN to hemoglobin. The doctors saw the patients several times during a run and were the ones to make the call on how much weight to take off and how long to do it. Here they don't have acute patients in clinic, so Daylon is listed as a "Chronic" patient. They do ten consecutive potassium checks and the the potassium will join all other labs and be done once monthly. So, ya ready for some good news that makes this once a month bit rough to hear? Daylon's kidneys have opened up! He's now peeing like a normal little boy and we need those labs to understand when the pee has become "good pee" and is excreting the toxins in his body. Dr. Kaston (the Nephrologist in MN) said he would be lowering Daylon's dialysis visits to three times a week if he were staying and that it may be just a few more weeks until he could be off! YAY! Woo-hoo!! Daylon is peeing enough to come in to every appointment lower than when he left, so I think things are moving along, but I don't know for sure. It's hard too because the Nephrologist only comes into clinic on Thursdays so there's not much time to talk about things. Last week he went to dialysis everyday and this week it's been almost as much. Ugh. So frustrating.
  I do have more good news...Daylon is no longer vomiting and is slowly working his way up to his caloric goal. He's able to take about 3 ounces by mouth now (through syringe or top cut nipple) and eats anywhere from one to four baby food servings a day! I can't even believe the change! He's still on TPN for 12 hours a day and we are meeting with his GI doctor regularly now to see if he can tolerate a slow wean of the TPN. Daylon also has a head CT scheduled for Monday. Dr. Haines (MN neurosurgeon) wanted the CT done to check on the fluid and membrane of dried blood. The goal is to have it absorb and the sooner the better. The stitches on the three Burr holes are also supposed to be removed today and I'm praying that his skin and hold up for the process.
   We are SO THANKFUL! that Daylon has stayed healthy through all the traveling and bad weather! :)
  Just as a little heads up, Daylon is still very fragile and the slightest illness, like a cold can be fatal for him. He still has to use his mask and stroller covers whenever he's around people outside our family. The doctor has us slowly reintroducing outside germs to his body again (IE: 15 min max in Target mid-morning when costumers are few or a walk outside when there's no wind to blow plant spores) but we won't be bringing Daylon around to any large group gatherings (IE: parties, school, church, movies, etc) until his one year mark in late June...assuming Dr. Tolar gives us the okay. It's really important that any close friends and family that do visit with Daylon have not been sick in the last week or be living with someone who has been sick. I can't even begin to explain how uncomfortable writing this paragraph makes me, but Daylon has come so far and been through so much that we just can't be careless now. I'm sorry to be the barer of bad news, but thank you for understanding. :) You all are great!
  This Christmas was especially special for us because not only was Brian's entire family together for the holidays (he's the fourth of six children) but so was mine (I'm the second of five and the only one who lives in CA still)! My family hasn't been together for Christmas since 2003, and back then, Brian was the only addition to our original family. Daylon has never met my youngest brother, Jonathan who came home from his two year mission in Argentina back in July while we were in MN. I loved introducing them to each other. :) Our niece (my sister's) and our nephew (Brian's sister's) were also born since we've been gone. It was so fun to meet these little cuties! Tell me they're not a couple of dolls!

Elizabeth!



Landon! (and Uncle Gene)



We didn't do any sort of party or real celebration for the twins (Daylon was sick) when they had their third birthday on the third of the month and since we had to skip out on their second birthday party as well (we typically celebrate their half birthdays since they were born so close to Christmas and this June we were in Minnesota getting ready for the transplant) we just decided to celebrate once we got home. It was just immediate family since Daylon can't be around any kids who aren't his siblings or cousins. Anyway, their party was on the 23rd and was such a great time. I felt guilty for how low key it all was, but the girls really had a good time and that's what counts. The party was at Pump it Up and because it was Christmas week, they offered a HUGE discount! I love a great deal (like half of what we normally spend on their parties)! We had the whole place to ourselves! This is definitely a family place worth checking out!



The girls and Uncle Jonathan

Aunt Lindsay


Uncle Joseph

Cousin Ashton

CousinAleyna 


Cousin Gavin and Aleyna with Keira


Aunt Jess


Baby Zeke (cousin) living on the edge


Aunt Michelle, Uncle Deven and Elizabeth

Sadie and Violet ssssssliiiiidddddiiinnnggg down!





Boo-boos happened...oddly enough, only among the grown-ups! LOL!


Aunt Emily

my side and his (minus the Jacobson's and the Talbots)


my four siblings and I

On Christmas Eve...
SANTA CAME!

While all eyes were on Santa walking in the door, my eyes (aka camera) was on my biggest Santa fan! If you couldn't tell, Caleb was THRILLED to see Santa!


 






Christmas was great and the kids have more than enough toys to last them their whole lives! Having all those aunts and uncles comes in handy! :)






On the 27th, Brian and I celebrated our seven year wedding anniversary. I can't believe it's been seven years. Brian and I have seen each other through so much in such a short time. The first six years were filled with what felt like 10 years worth of life experiences, but I know that we were just being prepped for this last year. I can't imagine going through all this with anyone but Brian. We're a team, all the way. Daylon's nurse (and friend of ours) commented that we talk about everything and it made her laugh to hear us cracking each other up. Brian is my best friend and my favorite person to spend time with in the world. Where ever I'm at, if he's with me, I'm home. I just want to publicly thank my Heavenly Father for such a wonderful man in my life and tell my hubby, " Happy Anniversary! I'm so glad we have eternity together!"


  Well, enough of the mushy stuff. :) Thank you all for your concern, prayers and love! You guys are amazing. Happy New Year!
Violet built the Ronald McDonald House

24 comments:

BRIAN AND BROOKE said...

Wow what a miracle that you were able to come back to Cali !! You truly are such a BLESSED family! I am so happy to see pictures with you and your family. You can see how happy you REALLY are. I am sure you kids loved seeing cousin's again:)
Sound like everything is getting worked out with Daylon and the new doctors. Of course you want every doctor to want to take a HUGE interest in Daylon... I would too!! Dont feel bad at all for having to keep it tight with germs. You have come too far to let anything happen.
Daylon is doing so great and I just am in LOVE with him! He is just a miracle himself and he loves life so much.
I have a little something I made for you..... as soon as I get to the post office I am sending off! Anyway I hope your getting settled in nicely and your crazy days can calm down a bit :)

Anonymous said...

Yeah for making it back to CA for Christmas. May you all have a wonderful holiday season. Don't feel uncomfortable with keeping people away from Daylon who you are unsure of their health. You have your priorities in the right place of wanting to keep everyone in your family healthy. Daylon has come so far. May you all enjoy a happy new year. You are in our thoughts and prayers.
Melody and family

Anonymous said...

I've never posted before, but I've followed you for awhile. I've been praying that all was well and that your family would all be able to be back together at home. Praise God for all the good news!

The McLaughlins said...

I am so excited to hear that you and Daylon were able to make it back to CA in time for Christmas, and you were able to surprise your cute little family. How fun is that!! I LOVE all of the great pictures you posted last night. It's so awesome that your families were able to get together and see Daylon for the first time and that you were able to meet the other new additions, who are both very adorable by the way. You DO NOT ever need to feel bad about making sure that the ONLY people around Daylon are healthy adults and kids. Daylon's health is too important. I think it's great that you were able to rent out that FANTASTIC jumping zone for your family and just have a great time together.

I am sorry to hear that the nephrologist here isn't as "interested" in Daylons case as the doctors back in MN. I can only imagine how frustrating that is for you and Brian. Hopefully, he will begin to listen and run the tests that you need him too on a regular basis instead of just once a month. I will keep him in my prayers. Hopefully his heart will soften enough that he will be willing to "talk" with the other doctors back in MN and make this a very easy transition for you and Daylon. I am so excited to hear that he is peeing more now. That is awesome! Hopefully it's the good pee!

Merry Christmas Edling family!! I hope you have a great New Years tonight and I pray that 2011 brings ONLY great things for each of you!

Lots of Love,
Amber McLaughlin, CA

Anonymous said...

Your post made me cry tears of happiness for Daylon and your entire family! So glad you were able to make it home for Christmas and surprise the family!

Continuing to pray for Daylon to stay healthy and get better and better every day!

Tina
Bella's friend

Janet said...

Everyone has been wondering if you and Daylon made it home. So happy that you did! Glad you are all doing well and hopefully Daylon will continue to improve!

Lisa said...

What a great way to wrap up the year. I love you guys and I ELATED to see that Daylon is doing so well. Thank you for sharing your story week after week, Edlings, and happy new year!

Anonymous said...

Thrilled to hear you've been able to celebrate the holidays as a family, and praying that Daylon will continue his remarkable recovery!

Kim (Utah)

Anonymous said...

Thank you for your post. This is what I wanted for Christmas. To read that all of you are home and on the mend. I have enjoyed reading and praying for you on this journey. And will continue praying.

Anonymous said...

So wonderful that you all had the Christmas you deserved. It sounds like the brain surgery was crucial in his turn around. It's amazing to see the wonderful family picture at Pump it Up (especially seeing the other pictures only a couple of weeks before).

Clearly, you and your husband are an extraordinary team with an extraordinary family. Beautiful!

Happpy New Years Edling Family!. It must be spectacular to be home. Your children look as gorgeous as ever.

Wishing many more miracles for Daylon in 2011. He has really proven that anything is possible.

Best wishes from the Big Apple!

Anonymous said...

Thank God! I am so glad your home and Daylon is improving!! Happy new year to all of you! Love, The Pops

Mom to Many said...

What a touching moment! I can imagine your hubby was pretty excited!
I am so happy for you! Wow, sitting on your own sofa, sleeping in your own bed.
I am so happy for you!

Cheryl

Anonymous said...

I am so glad you made it home - and I don't think you should ever apologize for putting the health of any of your children first. Here's to a Happy New Year - full of promise for Daylon's health and togetherness for your family.

sharon kaye said...

I am so glad you and Daylon made it home for Christmas. That was one thing we prayed for. I loved all the pictures of the family and extended family all together. I wish we were there to give youa big hug.

Anonymous said...

Glad to read all your good news! Wish you a marvellous New Year! Health and happiness to everybody!

Grammy Staffy said...

We are so glad that you got to come home in time for Christmas and that Daylon traveled well.
We keep your family in our prayers.
Welcome back to CA and good luck at CHOC.
Hugs, Lura

Anonymous said...

Great to know you are all back in Ca with your families and loved ones. You will get used to CHOC. God bless Superman and keep him on the road to a full recovery. Don't think twice about keeping people away from him until he is strong enough to withstand the germs etc. But I must say I will be first in line to give him a hug and tell him thank you when the time comes. He has inspired me and made me realise what is truly important. You are a wonderful family and I pray God blesses you all in a big way.
Bernie Gallagher, Fontana, Ca.

Mom to Many said...
This comment has been removed by the author.
Kim M said...

What an EXCITING post!!! You have made my new year already!!! Wow - you are home and Daylon's kidneys are beginning to work again!! To God Be the Glory!!!

I'm continuing to pray for Daylon, praying his kidneys continuing working and that the work they do is beneficial to him! He is going to feel so much better when he doesn't have to have the dialysis anymore!!! Whatever will you do with all your spare time???!!! Also, continuing to pray for his development and for his skin.

Wow - what an amazing kid!!! What an amazing family!!!

everyday katie said...

I hope you know I've been agonizing over this. Did they or didn't they make it home for Christmas? It was quite a cliff hanger. I'm so happy you made it home.

You are continuously in my prayers.

Anonymous said...

Hi Jen, Brian and kids;
We are so glad you and Daylon made it home safely for Christmas. It was so wonderful meeting and being able to talk to all of you for awhile. Thanks so much for your family making our Christmas so wonderful with the beautiful caroling you did at our mother's home. She was so excited and said how blessed we all our to know such a wonderful family. Your family has and will always be special to us. Glad to see the kids and all of you had a Very Merry Christmas and that all of your families could be together. Hope that 2011 will be better for all of you and especially Baby Daylon. He is such an angel and We Love him and all of you so much. Happy Belated Anniversary, you are such a wonderful and precious couple and you can see all the love you have for each other. Hope things continue to improve for Baby Daylon and that you can get some rest and be able to enjoy things again. Don't feel bad about not letting people be around Daylon right now, he is the most precious gift of all and you want him to continue to progress and get better, you don't need any more setbacks. In time we will all be able to hug that precious little boy. He is such a miracle. You are such a wonderful family. We just love your Mom and Dad, they are so wonderful and show so much love. You are all in our thoughts and prayers. All of the pictures were so great of your families and the kids. Daylon is looking good. If there is anything you need, or we can do for you, please let us know, we are always here for you.
Take Care & God Bless. Happy New Year 2011.

All Our Love;
Myrna & Dwight CA

Geri Kelly said...

What a wonderful happy thing to be home and improving! You are in my prayers.

Jan's Blog said...

Thanks for the update. I start feeling a little lost when I haven't heard from 'Daylon' for a few days. You are all always in my prayers and thank you for all that you taught me this past year as you're survived and succeeded in your lives of struggles, losses and great joys. You change my life and I'm grateful to all of you. Hugs for Daylon!!!

Anonymous said...

Hoping things are going well for Baby Daylon and the rest of you. Baby Daylon is in our thoughts and prayers for continued progress and healing.
You are such a wonderful,loving and caring family and possess such great values. Heavenly Father Loves You and so do we. Hang in there Superman, you are such a cutie. Just keep smiling. You have been so strongly in our thoughts and hope everything is going well.Take Care and God Bless.

All Our Love;
Myrna & Dwight CA