Tripp

I have a post that I've been working on every now and again, when I find a chance. Things have been busy. In the meantime, please read and comment on Tripp's and his momma, Courtney's blog. Tripp has Junctional Herlitz EB too (but much worse than Daylon is now) and is very sick. She is experiencing the moments that Brian and I have dreaded for two years and my heart just breaks for her. Thank you all so much for all the support you've offered our family over the last year. It's meant the world to us.

Happy Birthday, Daylon!

  Daylon's birthday is tomorrow! I can hardly believe our little guy is going to be two years old! I never thought we would ever celebrate his second birthday, so this is a dream come true. Daylon loves, loves, LOVES balloons, so it made sense to us to have a balloon (and polka dot) themed party. He was in HEAVEN! Because Daylon's immune system isn't quite what it should be at this point post transplant we kept the kid list to just cousins and our EB BMT family. It was hotter than hot (I believe it was 100F) at 4pm when the party started. I was so nervous to have Daylon outside in that kind of heat, but close to 5 o'clock or so, we ended up testing the waters and having him go outside. He sat under the canopy for some protection and had a blast. All in all, his skin did beautifully and handle the heat with out any blisters or breakdowns. Woo-hoo! All five of my siblings (and their families) were able to fly down, along with my 3 Aunts and several of there kids (we planned it to go along with a family reunion). We loved seeing everyone and celebrating with so many loved ones. Because my mind (and consequently, words) are failing me and this moment, I'm just going to show pictures. Here we go!



The Pops came down from Sacramento area (an all day drive)! It was so fun to see them and the Ringgolds!



the kids loved playing with Chloe and Ali for the first time since Minnesota

Balloon Games

 A balloon pinata

Daylon thought smacking the pinata with the bat was pretty cool! He almost didn't get a turn because I honestly, didn't think he would get it or care. I'm so glad he loved it!

The hit that did her in!



this cake looked better at the beginning of the party. The balloons are rice crispy treats and were sitting on dowels, but the blazing heat melted the marshmallows and fell completely through. I voted to throw them out after that happened (like 30 mins into the party) but my aunt Gwen  had an idea to just set them on top. It works I think. Not my best cake, but oh well. Daylon liked it and that's what counts, right?.  =P




Daylon got his own cake to dive into. We figured that since he was in a coma for his first birthday, it was only fair! :)  



look at him grab it!

 Balloon toys

For one activity, our good family friend, Gloria made balloon animals, hats, weapons, and jewelry for everyone.

Some more of our LONG DISTANCE travelers

Aunt Lindsay (from Idaho) holding cousin Elizabeth (from Utah)

this pictures cracks me up of my dad. Anyway, he next to Sara and Donald from Vancouver, WA

Aunt Gloria (CO) and Aunt Marla (WA)

Bubbles!

Presents! (Big thanks to Becky for taking the present pictures!)

We ended the party with a water balloon fight that turned into a full out war.
I stayed inside to save my camera so the pictures aren't the best.

My only regret (besides the heat, which there's no changing) is that I took more pictures. I was so busy running around that I missed some great moments. We feel so blessed to have been able to spend two great years with Daylon! We love you, son! Happy Birthday!!

Stay tuned for an actual birthday post hopefully (fingers crossed) this weekend.

Day + 365 One year ago today!

Daylon receiving the last of the bone marrow last year

The title pretty much explains it. One year ago today our sweet Caleb had a pop can worth of his bone marrow pulled out from him and place into Daylon. I can't believe it's been a year. In some ways, it seems like just yesterday but in other ways it seems like a life time ago. This has been the toughest year of our lives (especially for poor Daylon). I can't believe everything that's happened. I'm recapping this for you all: In this last year Daylon has not only undergone an intense regimen of chemo and a bone marrow transplant, but has had such severe mucositis that his airway swelled shut and coded, VOD a form of liver failure that causes kidney failure, then kidney failure, a brain bleed which caused a series of seizures one of which was so long, it more than likely caused a second brain bleed which shows as a stroke and caused severe brain damage to about 70% of his brain. His brain stem malfunctioned for a couple weeks and told his heart to shut down. Signed a "Do Not Resuscitate" order. He's had a couple dozen blood infections, a couple dozen skin infections, mucusitis of the gut that lasted for apprx. 8 months and caused severe vomiting . The vomiting and an unknowing respiratory therapist ripped apart his mouth resulting in 2 surgeries to repair the damages. A third head bleed, followed by 3 burr holes drilled into his skull. Then malnutrition to the point of electrolyte deficiency and possible death. I have been told by countless, countless doctors that a healthy adult could not have survived his medical history, more or less an infant with a deadly disease. He did though. There is no scientific reason to support why he has. No scientific reason to explain why he can breathe on his own, not to mention play or problem solve. Since his birth, we have been told over and over the same line, "I'm sorry, but your son will not survive." Do you have any idea how much I hate being called into a conference with a doctor now? The thing is, they've been wrong. He's survived. He's a fighter and one of my heroes. No matter what's thrown at him, it may knock him down, but it doesn't knock him out. I feel so blessed to live my life and get to watch miracles unfold daily. I know that the reason my son is alive is because of the hundreds of thousands of prayers on his behalf from those who love and care about him. Thank you for your prayers. Thank you for raising awareness of EB. I hear all the time about Bible groups that are praying for him, people who've put his name on Temple Prayer Rolls, fasts that have occurred on his behalf by entire congregations or individual people, people who put him on their list for Mass, book clubs that pray, co-workers that pray, children that mention his name in their precious prayers, the list goes on and on. We are so thankful and so touched that all of your are standing beside us in this journey.
  As you all know, the transplant has worked and it's been absolutely amazing how quickly it's worked. We're hopeful that several years down the road Daylon's life with EB will be a memory. Daylon's personalty shines through each day now and we see more and more of a happy, healthy little boy. He's also up to 23 lbs, which is heaven! Just 7 1/2 lbs more to go! Thank you all again!

LDS Mom to Many: Grandma's 84th Birthday Cake

LDS Mom to Many: Grandma's 84th Birthday Cake
Beautiful cake and such a cute lady!

A new man

I can't even hardly believe how great Daylon's days have been going. I don't know if it's getting enough to eat, the right antibiotics fighting off the pesky bugs that have been lurking in his system, or what, but Daylon's personality pre-transplant has been back and he's happier than ever! I just love it!!! He's smiling ALL THE TIME!! He's doing these deep little belly laughs that I haven't heard in about a year, he's started talking a little more, he's playing with toys, heck! He's even letting us put him on the ground to play with having a total meltdown. I can pee in peace! Aaaaaaaaaaa (That's the choir singing)! Okay, and get this. He has actually started hugging!! Real, honest to goodness hugging. Before if you asked for a hug he would just rest his head on your shoulder, now without even being asked, he'll open his arms up wide and give you just the cheesiest grin, hug super tight and rest his little head against your shoulder. It melts my heart. =)
  I will say though, with Daylon being so much more alert, giving him his injections of Epigen have become much more difficult. He used to just fuss for a second and then go back to his listless self, but now he fights and cries. He just looks at me with his little quivering lip with the facial expression of, "How could you". Oh, how I hate poking him with needles. The lack of fat on his legs, doesn't help either.
  Back to the good news...
  The blood work has come back from his One Year Check up and (drum roll please!) Daylon T cells are 100% donor and his C3 cells are 99% donor!! Yay!! At his 6 months labs, he was only 70-something % donor and we were becoming concerned that he was losing his engraftement, so this is GREAT news!! Still no word on his skin biopsies, but we're anxiously awaiting the email!
  At this weeks BMT appointment, Dr. Buchbinder said that he feels Daylon's check ups can be moved to every other week! I'm so excited to get two of my Wednesdays a month back! It's such a pain to load everyone up, travel over an hour (sometimes several in traffic, especially coming home), and worry about the five of them touching stuff in that germy clinic. They have babies with RSV, BMT kids, pulmonary kids, everyone, all lumped together in the same waiting room. One word: GERMS. So glad to get a break! Oh, I almost forgot! The reason Dr. Buchbinder feels he doesn't need to be monitored so closely by BMT?  He's gained almost a whole kg (2.2lbs) since surgery! Well, that's about it for the news on this end. Hope you all are doing well. Thank you for your love, support and so many prayers! We couldn't ask for more. :)

in the hospital

yesterday

We're home!

Shortly after I posted last Daylon's blood pressure slowly began to drop and within a couple of hours was in a healthy range. He held great pressures over 15 hours and Daylon was released from the hospital Sunday night! We were able to make our flights for first thing Monday morning! Woo-hoo! As usual, the trip was stressful and frazzling. This time they even patted down Daylon. Having his tummy patted a few days after surgery resulted in many tears. Plus, to save money, Brian flew with a different airline and landed at a different airport (note to self: not worth it), leaving me to carry Daylon in a blanket with his long feeding tube, his little backpack with the machine, the diaper bag, camera bag and the car seat all the way back to the VERY. LAST. ROW. of the airplane. Did I mention that in the process I managed to get his feeding tube caught on arm rests three different times and only knew when I had walked far enough away from the armrest that it was caught on that Daylon yelled out. By the time I got to our seats I was ready to cry along with him. One word: Nightmare. Anyway, after a long day and a good night's rest, we're home! We go to clinic tomorrow (and every few days for a while) to make sure that his blood pressure is under control. Today we're just spending it trying to get back into the swing of things. We'll keep you all updated as we know more!
  Thank you for your prayers! I know that Daylon has made over obstacle after obstacle because he has so many wonderful people praying for him. Thank you! Thank you! Thank you!

At the hospital stay continues...

Welp, we're still sitting pretty in the hospital. Unfortunately.

Daylon blood pressure has been in the high 150s/110-ish since surgery. This is obviously high for an adult, more or less a 22 month old. He's on four different blood pressure meds without seeing much difference. The renal team was called up to bat again to help with Daylon's care since the kidneys control blood pressure. An ultrasound of his kidneys was done and it showed that Daylon's kidneys are shrinking. As he gets older, he will quickly outgrow his kidneys (especially if they keep shrinking) and he'll need a kidney transplant. You know that sick feeling in the pit of your stomach? Yeah. I've got that. I am praying, praying that by some miracle something happens and this all goes away, but I know that sometimes these things happen. I just feel so horrible for out little guy. This poor kid has experienced so many bad things. Anyway, they've upgraded (I"m not sure that's the right word) his renal condition from acute to chronic, meaning permanent. The PICU doctors have also been called over to our team again. Hopefully with everyone's help, Daylon's blood pressure can be managed and under control before he has another stroke.

new hospital rooms. Every room in the hospital is identical

 The culture from his lungs came back growing a stubborn bacteria that causes pneumonia. Because he's been off and on antibiotics for months, it's probably helped him from actually getting really sick. He's on a new aggressive antibiotic for that.

each room has a 60 inch tv. There are 6 BMT rooms with this big tv and then two small tvs off to the side of it (I have no clue why) and a fourth tv hidden in a pull out wall attached to the bed.

 The culture on his foot came back growing 3 different forms of bacteria. One was staph, another one is some belly bacteria (I have no clue how that is growing on his foot) and the third is a really rare bacteria that I'm told is not normally seen in this hospital. I can' t remember the name, sorry. Anyway, he's on another oral antibiotic for his foot and we're supposed to continue with the bactraban.

At the one year check up they check for a slew of disease and various other illnesses and Daylon's labs came back positive for Hepatitis C. They ordered a recheck and the machine malfunctioned on the results, so a third was taken yesterday. We should get that back tomorrow. If he does in fact have hep C it's probably from a blood product he received. I'm still hopefully that this is all just a mistake.


  The good news is: Brian's here! Yay!

Plus, Daylon had a neuro psych evaluation yesterday and they said that overall, his abilities register at about 13 months. That's great! I was actually thinking that it was closer to 8 months or so. His gross motor is way behind for his age, but his foot has given him constant trouble his whole life, which would prevent him from walking. His fine motor skill and problem solving skill are almost age appropriate and for me that's HUGE! It shows that the brain damage is being repaired and that he's thinking close to like a kid his age. They also said that with what he understands of language and the babble that he's able to make, his speech may be delayed, but it is coming! Woo-hoo! We're beside ourselves with this news! Now, we just need to make him healthier!

 This trip has been a lot harder than we anticipated. I was so excited to get his nutrition under control and now there's several new worries to take its place. Daylon is such a brave little guy. He is poked several times a day and he doesn't fight it. He gets test and procedures done and as long as we're close he's okay. Don't get me wrong, he fusses a bit, but he doesn't scream and fight the way I would have at his age. He's such a fighter and I love him so much.



In the hotel the day before surgery



Sometimes, Daylon reminds me of an little old man filled with wisdom. These expressions are why. He sits like this all the time! It cracks me up!