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!
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|
|Cousin Gavin and Aleyna with Keira|
|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!|
|my side and his (minus the Jacobson's and the Talbots)|
|my four siblings and I|
On Christmas Eve...
|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!|
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|