Day +158- Hello out there!

 
Oh my goodness! It's been a while now and things have been crazy! We just got our computer back! It's been over a month since we've had a working computer...Toshiba took their sweet time, huh? I hope I didn't worry anyone too much. My phone has decided not to let me on the Internet either, so I've been out of touch with reality. Let's bring you all up to speed....

Caleb loves Aaron and Jackie!

   I wasn't able to write much in the last entry because my phone was acting up and I could only write in the "Title" line. Daylon had surgery on his belly and had a PIC line placed in his right arm. He only lost about 30ml of blood, which is a first and a huge plus. :) They kind of did a tummy tuck technique on his belly: They cut out the really bad area of skin and widened the opening, sewed each layer (IE: stomach, muscle, fat) and then pulled the two ends together and sewed the skin closed. We are SO, SO, SO thankful that the stitches have stayed in! The incision is only two inches or so, but it's a good portion of his belly. Typically, the surgeons are pulling the stitches out as they put them in. It's taken a few procedures, but they're getting down a new way to keep them in....not to mention, the transplant is working. A CT scan of his brain was done on Wednesday which showed two things:

1. The fluid on the left side of his brain has decreased significantly...more than anyone would have thought, actually! Yay! The hemorrhage on the left was down graded from quote, "as big as you can get" to medium or mild! :) 
2. The right side of his brain has a new hemorrhage with fresh blood. :( Who even knows how it happened. They said that Daylon could have thrashed his head, moved too quickly, anything. We have to continue to be diligent in making sure he doesn't move his head to quickly or heaven forbid, fall.

 So, what does this mean? Well, for now, surgery has been put off. He isn't a candidate for a shunt anymore because the fluid isn't re-accumulating. Next week he'll have another head CT to see if there's less fluid on the left and how much fluid has been created from the new head bleed on the right. If there's no improvement or if there's more fluid, then they'll drill into his skull to release the fluid. As soon as the fluid is absorbed or is released, then his head should quit growing and begin to fit is brain again, reducing the chance of head bleeds, stroke and or brain damage.
   From all of the open skin, he developed a staph infection that covered his abdomen. Between that and needing to wait to have all of his meds transferred from IV to oral, he was in the hospital until Saturday night. Back at home, trouble was brewing at the same time. Keira's croup started acting up the day Daylon was admitted. Sadie started having Croup issues, a few days later. Apparently, Croup is highly contagious and can be devastating to immune suppressed kids, so the doctor had Brian and the kids stay locked up in our room and Daylon and I were sent to a hotel.

he's in there somewhere!

  We got to the hotel on Saturday night and Daylon and I hung out and played and were bored together. The TV had every news channel you could want (or not want in my case) and local channels. Slim pickins. It was nice to bond with Daylon, just the two of us, in a comfy setting. He smiled a lot and we did a lot of physical therapy and practiced drinking from a bottle. By Monday he was up to three whole ounces!! Pretty impressive!
  During Saturday's dialysis the nurse held down his hand to keep the pulse oximeter on and it blistered up his hand. I was so upset! I lanced almost 10 blisters on his hand and wrist and it left his whole hand open. On Monday at dialysis, his finger had blisters all over them. Life with EB for Daylon means that once an area gets a blister, the surrounding area breaks down over the next several days. I feel like it's a race between EB and I over the condition of Daylon's skin. Anyway, I didn't think much of it until  he had both hands side by side. His right hand was red and his fingers were almost double the size of his left. After dialysis, he had an ultrasound of his arm where they found a blood clot from a location that the doctor attempted to put the PIC line in at and his Hickman line and PIC line were sharing a vein and blocked blood flow where they met up. Soooooo, back in the hospital we go. PIC line was pulled Monday night, new line put in Tuesday afternoon and we decided to throw in a tongue surgery too. For those of you who have followed the blog since July, this will be a repeat for you, sorry. On the forth of July, while Daylon was intubated, the respiratory therapist suctioned Daylon's mouth with a neosucker and pulled a several layers of skin off his tongue when it made contact. I will never forget watching his heart rate soar and tears stream from his sleeping eyes as he lay there paralyzed from meds and trapped in his body. From that incident, a large growth of scar tissue formed on the side of his tongue, which peaks out from his closed mouth. Now that his one year molars have broken in, he's biting on it and the area keeps bleeding. Anyway, we had the ENT come in and remove it while he was under. He received several new blood blisters in his mouth from the tool used to keep his mouth open, but the growth is gone! Woo-hoo! With any luck, this will help him to want to eat.

Viking players came for a visit!

  On the home front, Brian took the girls to the doctor's on Wednesday (typically with Croup, it last a couple nights and goes away, so we don't take them unless it's bad to get steroids) and Keira was diagnosed with Asthma...although, I'm not sure I'm convinced. I think Violet is catching her "Asthma". :)
  Daylon was released from the hospital Thanksgiving day, which was one of the things we are thankful for. We were able to be together as a family for the first time in two weeks!! It felt like an eternity! It was so hard not to see my hubby and kiddos for so long. They were really sweet and snuck into our hotel room on Monday and put up a homemade "We miss you" sign and pictures the kids drew for Daylon and I.

 Unfortunately, a few hours after they decorated the room, I called and asked that he go to the hotel and get all of our stuff and close out the account, since Daylon was being admitted! :( Can you believe it!? Brian sent me a text of what the room looked like, so at least I got to see what it looked like! LOL!

  We've spent the weekend in our room, trying to stay out of the cold, enjoying the Christmas season and trying to keep the kids healthy....not sure if it's working though. Caleb seems to have a stomach bug now. Ugh.

NEW GLASSES!

  Daylon is sitting up now for maybe 20 minutes before he tires out, leaving his PT goal of 6 minutes by Christmas in the dust! He loves to play in his activity center several times a day and doesn't complain at all about having to put weight through his legs. He says "Mama" or "Mom" for me, "Dada" or "Dad" for Brian, "up" and  "uh-oh!" this week. Each week his vocabulary comes and goes. Last week he was saying "Gotchya!" but I haven't heard it in days. While he was in the hospital several doctors asked if anyone had talked to us about his lack of talking. He RARELY babbles, which I'm told is a tell-tell sign that's something's off. He is picking up American Sign Language a bit. He signs "Mom", "Dad" and "up" which of course are words he can already say! LOL! Silly kid! He understands a bunch though. He responds to and or tries to sign, "sing songs", "cute boy", "toy", "drink", "Daylon", "stories", "kisses", "I love you"and "Mickey Mouse". He can also point to his eyes and nose when asked. Regardless of what the neurologist thinks, I think he's doing okay for a kid his age that was unconscious for two months and has under gone everything he has. We're just taking it all one day at a time.

  Okay. Sorry. I know this was a lot to spill on you all at once! We're doing good and taking everything one day at a time. Thanks for all of your love, support and concern. We love you!

These two are such cute buddies!!

at Elle's memorial: our kids and Chloe

I walked in on these two cuddling with a book and I had to snap a shot!

Daylon's surgeries went great...no intubation AT ALL! woo-hoo! He's doing pretty good. Some pain, but still the toughest dino around! My phone won't let me type in text box, just in the title box. More tomorrow! Just wanted to check in so you all didn't worry! love, Jenn

Day +143 surgery--part one

Today was another crazy day. Here's the breakdown:
-this morning we waited around and were then told his surgery wouldn't be @ 7:30am and instead they would fit him in in the afternoon.
-we then went down to dialysis
-after we were there 20 mins., the Dr. called and said we need to come to the OR if he's going to have surgery today
-stuck in dialysis, they give us a time of 12:20pm tomorrow for surgery--not thrilled at this point
-got to the dialysis unit at 9am (keep this in mind) and clots clouded the machine.
-switch out lines, only to find out he has several clots in his central line.
-big opps moment-clots pushed into line and we watch for heart issues, meanwhile, I'm about to have heart issues
-at ONE O'CLOCK, Daylon is hooked up to the dialysis machine to start his 4 hour run
-it's decided that Daylon will also get a new Hickman and PIC line during surgery (Dr. Tolar is out of the country so he's being over ruled)-praying that the extra chance of infection won't come to anything
-Daylon's blood pressures climb to 170/100(due to infection from his tummy? Pain?) Again, I get heart palpitations :)
-dialysis ends at six o'clock and we emerge from the dark, no access to service, basement
Well, that brings us to now. Daylon's set up in his hospital bed and sleeping.Carin from Child and Family Life Services dropped off some toys and a mobile. He got to playing with them right away. It was nice to see him smile and play. He's been in a lot of pain today and it's always hard to not be able to pick him up and comfort him during dialysis. For being down there nine hours, he did great. He's such a sweetheart.
He has yet another corneal abrasion and his skin is starting to break down. It's typical transplant stuff...when there are so few cells (because it's so early after his transplant) and he gets a really large wound (ie:his belly), all the cells rush to the wound and the rest of his body suffers. He should still be able to heal quicker (benefit of transplant) and things will hopefully return to normal. I hope you all had a great day! Thank you for all your prayers! Sweet dreams.

Day +142- surgery news!

Yay! I have good news! Daylon has been put on the surgery schedule for 7:30am tomorrow!! I'm so happy to have this done with once and for all! Thanks to the antibiotic drips, Daylon's fever is gone. He's been fussy off and on most of the afternoon, but typically just before one of his pain meds is due.There's debate between the staff whether there's fatty tissue or puss coming out of some deeper parts of the sore. As of this morning, the cultures taken from the sore were still peneding...the lab is slow on the weekend. The biggest concern for tomorrow is intubating him.Last time he was intubated, they said that there was so much scar tissue that they couldn't fit the camera down and had to do a blind intubation. In the process, they injured his throat. While I know that tomorrows intubation will also be blind, I pray that no harm will be done.
On a whole other topic, can I just say how AMAZING you guys are. I've read the comments that throughout the day as they have come in and they've helped to lift my spirits so much! Thank you for that! I feel so much better today! :)
One last bit that I forgot to mention:it snowed on Friday night 5-6inches (depends on the weather person you listen to)! Crazy,huh?! Back home it's supposed to have been in the 80's...what a difference! The sun is setting now at 3:45-ish now too! Winter is coming!
I'll try to post tomorrow, even if it's quick, to let you all know how things went.sweet dreams

PS- sorry for another pictureless post. Still no computer, but I did figure out how to post on my phone! :)

day +141- back in the hospital

Today was emotionally draining and I'm ready for tomorrow. 7am this morning Daylon was screaming and blood was rolling down the side of his tummy while I changed his dressing. Brian couldn't even look at his belly and I was done. It was one of those moments where you either have to start bawling or start yelling, but some emotion is going to bust down your door? It was that moment. I called thw hospital, asked for the Pediatric Surgeon on call, and then told him (without losing it, I might add) that he WILL fix this giant hole TODAY. Yesterday he was in this guys office at 10am (yeah, no date hour :( )and they said he'll have surgery at some point next week. Today he told us to take him to the ER and he would look him over. Long story short:he didn't look at his bare skin, he refused to do the surgery this weekend (b/c the proper EB trained OR staff isn't all on) and he said he would try to squeeze him in sometime during the week. Oh! He also said that if I wasn't able to change the dressing for his whole stomach,then he could be admitted so the nurses could do it. :/ It was like he didn't get that this kid was covered from the neck down constantly until 2 or so months ago! Sorry. Guess I'm still mad. Anyway, I said that he needed to help him on Monday for sure then and he said he would try to fit him into his schedule Mon or Tues.if he were admitted,but he can't promise anything. I took the offer and emailed Dr. Tolar on the spot. I PRAY that he comes through for us and tries to throw his weight around to get it done asap. It's nice to see everyone on 5D. They're so wonderful. Everyone showers Daylon with attention and they're fuming right along with me. :)
Daylon had dialysis today also. I was lectured for most of it by 6 different dialysis staff about how he shouldn't be on IV drugs and how I'm ruining his line by meds through it. They poured on the annoyance like there's no tomorrow. I wanted to just say, "Are you joking? You're mad at me for giving him his meds?!" They refused to allow me to give him his CSA because "he can miss it" and his Keppra (seizure med)because "it can wait". I've been like a volcano all day and I think you all are paying for it with my vent. Sorry.
Anyway, Daylon is now also running a fever of 103.7 and his belly is so raw and eaten in parts that what looks to be his fat is starting to poke through in the areas where the most skin has melted away. Also found out that his bile PH level is one...so, pretty much pure acid.
The surgery will take about two hours and Daylon will be intubated and paralyzed for it. Please pray that everything will go well in surgery that he will be extubated immediately afterwards. I put on the "Pandora" website so Daylon can go to sleep. The songs haunt me. They're the same 20 or so songs that played for Daylon when I had it on when he was in the PICU. So many horrible memories are flooding my mind as I type. I think it's partly to blame for my fear and hysteria in this post. That and today while I was changing Daylon's dressings Caleb said:
Caleb-I'm gonna be sad when Sadie's and Violet's birthday comes (Dec. 3rd)
Me- Why?
Caleb-because that's when Christmas is coming and Daylon's going to die and we're going to go home.

We told him that Daylon would be fine and he was coming home with us. I know he's probably just confused because unfortunately,two of his closest friends here had their EB baby die and then they leave us and go back to California. He knows we're going home right before Christmas, so I think it's how he sees all this. I'm sad that my kids have had to experience so much pain in their short lives, with so many grown up thoughts and concerns. His words have weighed on me all day.
He has this surgery and then his brain surgery that I'm nervous about. His stomach is more than likely infected as well, which will be another challenge for him.
Thank you all for helping to carry us through our trials in prayers and friendship. It means the world to us.
Thank you to all of you who attended the blood drive today...whether it was in California or New York or somewhere in between, thank you. Sweet dreams.

Day + 139 Life without a g-tube

N/J tube holding on for dear life! LOL!

   Well, folks, it's been a crazy few days around here. In our last post, I mentioned that I had to finish pulling out the n/j tube and we were going to try to start feeding Daylon. Well, that day I fed him smoothie type food and drinks and they all fell directly out of the OPEN hole on his tummy. By dialysis the next day, he was a screaming ball of fury, ravenous with hunger. Brian and "Dialysis Dave" had to physically hold him down to keep from losing the run. His pressures were all over and he was t-i-c-k-e-d. I dressed the three middle kids and myself, grabbed Daylon's "Baby Mozart" movie and ball popper and headed for the hospital. Half way there I decided to stop in at Jamba Juice and grab a super thick smoothie for Daylon. Jamba Juice is three times as thick as Gerber's smoothies, so I thought we might stand a chance. When we got to the dialysis unit I started to feed Daylon the smoothie. Forty-five minutes later the ENTIRE 32 oz. smoothie was gone. Naturally, someone his age can't drink that much...you see where I'm going, don't you? It was all out the hole and all over him. As long as food was going in he was a happy camper. I have no picture to show you, but let me help paint a mental picture of this hole.  I needed to stay on top of the constant drippage to keep his skin from burning, right? Well, when I would remove the bandage or towel to change it out, the juice would spout out like a fountain! It was like he had his own blow hole. Seriously. It was shooting up in the air. Naturally, we all had a good laugh every time I would switch out the dressing, but if you think about it, that's a big hole!
  Brian and I were torn on this dilemma. Brian wanted him to be hooked back up to something asap so he could get the nutrition he needs and no longer be hungry. I wanted to somehow figure out a way to see if we could test the waters of life without a G-tube. It killed me to see him so hungry, but my gut feeling is that life (and vomiting) would ease up if we ditched the tube. We had no clue what to do. Thankfully, our nurse coordinator Teresa, saved the day! Her plan, which is the current plan, is to give Daylon TPN (IV nutrition) over the course of 12 hours every night and then he can try eating during the day. Perfect! This plan makes so much sense, I'm kind of embarrassed that it didn't cross my mind. :)
  He started TPN that night and the hunger has left...or at least he's not a crazy baby anymore. :) Now that I know we have the BMT doctors backing our idea seeing what things are like without the tube, the stress of it all has gone down. After watching the 32 oz smoothie pour through him, I decided to try to wait until the hole closes up to start really feeding him. All that acidic stomach bile on the skin can do a number. Unfortunately, Daylon was still dripping like a faucet and needed to have his dressing changed every hour or so. It's been non-stop at our house. Daylon is requiring a ton of care and no matter what I do, he smells like puke, I smell like puke and the room he's in smells like puke. It's lovely. :) This morning when I changed his dressing before dialysis, his skin was so raw and red that I decided to call the surgeon back. The top of his chest looks like rolling hills of blisters. I would like to see the hole closed up, but the doctors are afraid it may cause more trauma to the skin. Today the Nurse Practitioner put a bag up against the hole and it's working great. My only fear is what his skin will look like when it's removed.

Night of surgery with a wrapped tummy

 
  Daylon is LOVING life without a g-tube. I really think that it had torn up his stomach so much that he was in constant pain. He's smiling and happier than I've seen him since before the transplant. It's amazing! He laughing at silly baby things and it just excites my heart. He's not thrown up once since he had the tube removed and the stomach is no longer bleeding. He's dying to eat! I can't wait for this thing to close up so we can get down to business! Now they're saying another week or so. Oh, well. What's a week? Probably feels like a lifetime for Daylon, but he's always been such a trooper. He just takes whatever life throws his way. Ah, I love that little guy. :)
  Because all of his meds are going out through his stoma (the hole) he's now on IV CSA and Keppra (his seizure med) along with the Vanco (IV antibiotic) that he was already on. I'm constantly flushing and clipping something, but his levels are coming back up. :) I think I forgot to mention last week that his foot culture came back positive for a large growth of staph...that's what the Vanco is for.
  We also went to the memorial for Elle yesterday. It was spiritual, uplifting and beautiful. What a great way to remember the life of such a darling little girl. The Pops fly home tomorrow morning and we're going to miss them. It's going to be so lonely here now. Well, I guess I could let me kids keep me busy. LOL!
  Oh! Just to keep you all in the loop too, Daylon has started babbling like crazy since the surgery too! He's back to saying "Mama", "Dada", "hi", "up" and I swear there was an attempt at "I love you"! I said it first to Daylon and then he said something back that sounded a whole lot like "I love you"! Brian and I turned and looked at each other and said, "Did you hear that?" Of course, we couldn't get him to do it again though. :(  I guess his tummy hurting just put him out of the mood to talk! Ha! Go figure!

What is this delicious invention? Sugar, you say? Hmmm....What? It didn't leak! :)

  
 Tomorrow is my favorite day of the week! The RMH has preschool every Friday for an hour. What a wonderful hour. Just me and Brian and a sleeping (cross your fingers) Daylon. It's our date hour...which usually just involves us eating breakfast together and talking, but do you have any idea how nice that is?!  Well, most of you are parents, so you do....don't worry, it's okay to be jealous. ;) Sweet dreams.  

surgery update- It's done!

It's been a crazy night and I'm tired, but I just wanted to give you all an update before I hit the hay!
Daylon's surgery went well. The doctor that preformed it isn't his normal surgeon and he decided not to close the hole. He left it open and will allow time to heal it.
I thought it was leaky before! HA! Anyway, they put in the n/j tube down his nose and into his gut. Before he got home, Daylon had it half way pulled out. :/ We called BMT and they gave me instructions on how to properly remove it (I feel like a nurse more and more everyday!). Tomorrow they'll come up with another plan. This is all fine with me, because I've been curious to see how he would do with no tube.
He's had all of his meds orally (for the first time since transplant) and kept them down. I just give them 15 minutes apart. He also had 1/2 a thing of spoonable smoothie babyfood over 45 minutes for dinner and 4oz banana smoothie before bed. So far NO PUKE!!! Yay! It does help that A LOT of it drains through the hole and all over him (and me), but hey!it's a start! The hole should heal very quickly. Ok. That's it from me! Thanks for all the extra prayers! Oh! Also thank you to all of you who have mentioned that you're going to the blood drive on Saturday! Someone is even going to find a blood drive on their own, since they don't live in the area! That's awesome guys! We're so thankful for your support!
Sweet dreams.
PS- I'll try to post pictures tomorrow!

Surgery Update!

Just wanted to drop a note and let you all know that the surgery clinic called and said that the doctor wants Daylon to have his stomach surgery asap. He's vomiting several times an hour now. He's going in today 2pm CST. Please keep our little guy in your prayers! Thanks for all the support!

Day + 136

I'm really sorry I haven't posted. It's really unfair of me to leave you guys hanging for that long. Our computer is still somewhere in Colorado and life here has been stressful and sad.
  First off, I wanted to let you all know, if you didn't already, that Baby Elle has joined Bella and all the other beautiful EB babies at our Saviors side. She left her earthly body of pain on November 4th with her Mommy and Daddy by her side. We have so much love and respect for the Pops. They having taken her passing with such grace and understanding. I am in awe. What a wonderful testimony of faith and love they have been to Brian and I. Thank you to all of you who stopped by their blog to leave them a note. If you haven't, please visit Elle's blog and drop them a line. I'm sure they are grateful.

*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*

     There's been a few new developments lately with Daylon, so I'm ditching the post I wrote the other night because it's kind of outdated. It's after midnight so I'm gonna try to keep it quick.  :)

    Ladies and Gentlemen, I give you,

The good, the bad and the ugly:

  Daylon g-tube site started draining like crazy, scratch that, a volcano. I have pictures, but no worries...I won't post it. He's vomiting 15-20 times a day, a for a new twist (well, since last week)  dry blood today. His nutrition drip is down...way down. The BMT clinic is actually kind of freaking out over it, but for some reason, neither Brian or I are phased by the lack of nutrition. He looks fine. Well, he looks HUGE actually. Dr. Tolar thinks he's handling it okay, but thinks we need to be on our guard, in case he shows signs of malnutrition.

 All of the vomiting and the leaky g-tube have continued to burn his skin. His skin around the g-tube site, his upper chest, neck, shoulders and upper back are SO. RAW. My poor little guy is dealing with it like a trooper, as usual. He amazes me. Just so we're clear, we're getting to the vomit the second we hear it, see it, etc. it's just that with that much acidic fluid being poured on his skin that often, his little EB skin just melts, for lack of a better word.

  He saw a surgeon this week and he'll more than likely have surgery on Tues. The g-tube site hole is about half the size of his actual stomach (like the organ, not his belly) and it's reeking havoc. The plan is to close that up and stick a N/J tube from his nose into his jejunum (part of your intestines). Gulp. Needless to say, I'm about to wet my pants over here at the thought. I'm worried about the webbing down his throat, chance of it rubbing and causing further blistering through his airway and GI tract, and of course, him pulling it out. This will hopefully just be for a few weeks while his stomach heals, and then a second surgery will be preformed to put in a new g/j tube in a new location on his stomach. To be completely honest, the whole thing just kills me. Daylon has always had an appetite. He still does actually, he just can't keep ANYTHING down. Pre-transplant, we had finally gotten to the point that as long as we used the right instruments (silicon spoons and Meads Johnson cleft palate squeeze bottles) and the right foods (concentrate Organic Similac and baby food that didn't...well, this was quite the list so we're skipping it) he could eat like a champ with only a few puking episodes a day. Oh well, I guess it's all sacrifice to save him and that's worth it.

    Dr. Tolar has been talking with Dr. Hines who is the Neuro Surgeon in charge of Daylon's surgery. They've met and hmmmm-ed and  haaaaa-ed over things all week. Originally, the surgery would involve a couple drill holes and I'm not sure what else (I've not talked with Dr. Hines since Daylon left the hospital), but now they're thinking that they just may be able to remove the fluid with a shunt, which according to Dr. Tolar, is less invasive. I have no clue about any of this. I've tried to educate myself on the topic with articles I've found online, but I still have a million questions. We meet with him next week, so I'll keep you posted. Please pray that Daylon will make it through this surgery (I'm really worried about that) and that he'll be able to live a normal life. They think that the fluid has slowed his progress and could actually make it decline. If they move fast enough, then the damage may not be permanent. He'll still have the brain damage that was done from the stroke, but not the fluid. Sorry, I hope this makes sense. It's late and my writing is showing it! I have a question for all of you out there: If you have any personal or professional experience with a shunt, will you tell me a little something about it? It may help calm my nerves. What I would like to know is if the draining line is outside the body? How large are the incisions? Does it have to be a permanent thing?

  I know every person is different and no one on the blog has seen the MRI or anything, but just general understanding, is what I'm looking for. Thank you in advance! Oh! Also, thank you to those of you who told us about St. Joseph's pediatric dialysis program! I passed the word and website along to Teresa (she's coordinating all of Daylon's programs for back home) and she's getting it set up! :)

He's so studly

  Last little bits of news, Daylon's Day +100 labs came back. Daylon was 100% engrafted with Caleb's cells and he's now down to 94% on one type and 91% on another. I asked if he's losing his engraftment and was told that it's not likely, he just needs to stay on his high dose of CSA longer. His poor kidneys. He'll be checked again in mid-December before we go home.

  Speaking of...I don't think I was clear in the last post. We're not going home for vacation, we're going home for GOOD December 20th! That's our, well, it's been real, enjoy having normalcy return to your life, date!!! I AM SO EXCITED! I love it here, but I need real life again. There is a slim chance (like next to none) that Daylon will need to be here longer and if that's the case then just he and I will return. The moments of daydreaming in my life are all about Christmas. I can not wait. Brace yourself. There will be more Christmas talk. I guarantee it. :)

End of September

3 weeks ago

Here are some first for Daylon from this week:

- started wearing REAL diapers! He's wearing Pampers Sensitive now! I can't believe it! This is a huge improvement! Diapering an EB kid is trick-ick-eee. When he was born (before we knew he had EB)he wore regular diapers= completely raw, fleshy skin, then cloth diapers that can't be worn with the rubber pants because of the elastic so he wore nothing over them= 10 diaper changes and full onesie changes a day= no skin on his elbows, then cloth diaper with sheepskin cover=EXPENSIVE and eventually the sheepskin got rough from being cleaned too often, plus the "dirty" diapers leaked through anyway, then my "Ah-ha!" moment! A gerber 3ply cloth diaper (thick and soft. We were using them from the start) wrapped around his diaper area and a soft regular diaper covering it! The poop and pee stay in the diaper without ripping up the skin! Hooray! Ah. Good times. I felt like a genius that day. Pops came up here and found out they're doing it too. LOL!

   Remember when I said I was tired so i was gonna keep it short? Haha!

 -Everyone is desperate to start moving Daylon towards making milestones again. Kind of panicky, is the feeling I get. Anyway, we need to figure out how to get him to put weight through his legs. Can't hold him from under the arms because his skin will tear and there's the Hickman, can't hold his fingers because he has never, EVER stood on his feet before so he's weak and his hands are still a work in progress. What to do? What to do? We went to Babies R Us, found an activity center that he was too small for and had the softest, padded seat and bought it! Thankfully it was the cheapest one too! The reason behind the too small bit, is that then it forces him to stand on his whole foot and he can't enjoy the springs in the seat and rattle his fragile brain this way too! :) He's never been in anything like this in his life, so he thought he was pretty cool and we thought he was pretty cute. It worked. He stood and played!

 Brian and I took the blister test. I got my first blister at 40 minutes and all three at 43 minutes. Brian got his first blister at 38 minutes and all three at 43 minutes. We're twins! ---not literally, just by blister results

  I wanted to let all of you in Southern California know that there's going to be a blood drive in Daylon's honor. As you all know, Daylon was o a platelet drip for for a couple weeks, received who knows how many blood transfusion (in fact, he's had two just this week), and other blood products. He has caused quite the rift in the blood banks supply. :) The blood that will be donated will not go specifically to Daylon, but rather people in the area, however it will help make up for what he's taken out.  The goal is 200, so if you can come, feel free to bring a friend! :) One of my favorite parts of the event is that there will be a table there, where you can sign up to be put on the National Bone Marrow Registry list, so others who aren't as lucky as Daylon to have a identical sibling match, can find someone. Please, sign up to help save a life. Who knows...if you give blood and sign up, you may save a few! Everyone who participates will receive a complimentary Chic-Fil-A sandwich coupon (not mention the free orange juice and cookies....if that's not motivation :) ...)

   Blood Drive

November 13th, 2010

7:30 a.m. to 1:30 p.m.

1123 Lincoln Ave. (inside the church gym)

Corona, CA 92882

Questions? Call Darrell or LouannMc Phie 951)735-3985

  

 Quote:
"I'm super everyday, so I should wear my Superman costume today!...also, because I like to fly."- Caleb


Sweet Dreams!

PS-A special thank you to Myrna and Dwight for beautiful birthday cards for the kids and yet another HUGE care package! You guys are great! Can't wait to meet you!

opps!

The link to Elle's blog was incorrect in my last post. Sorry! Try
www.sweetbabyelle.blogspot.com or click on her name to the right of the screen,under Daylon's EB friends.
Thanks!

Day + 133 Part one

I have a post written that I'll post tomorrow. Daylon is doing well..some more bumps in the road, but nothing major. Right now I beg all of you to visit Elle's blog and leave her parents some words of encouragement. Please pray for Elle and the Pops. Please pray for the children in the world who suffer with EB and the families who watch them suffer. Please pray for a cure. We need you.

Day + 129 Halloween!

HAPPY HALLOWEEN!!

  Hello, All!

  I hope all of your children have filled their bags this weekend with plenty of treats, so you can thoroughly enjoy your mid-night candy bag raid. :) No. No one out there does that. ;)

  Ah! I feel SO much better today! Last nights journaling was so therapeutic.

  Our morning started out with Sadie heave ho-ing in bed, followed by Brian feeling queasy and two other children have another sort of tummy trouble if you catch my drift. All of that loveliness added up to a day lock up in our room. No church, no nothing. It actually wasn't a horrible day to be honest. We were all together without a single interruption from Dr. appointments, therapy, dialysis or even school.

   Poor Daylon is still suffering with his eyes. He did open his eyes for a few moments here and there, but they were pretty much clamped shut and dripping tears. He amazes me so much. He hardly fussed today but was in obvious pain. In fact, at one point tonight I had him on my bed and when he could feel that I was next to him and spoke in a silly voice he would do his little Stevie Wonder smile. :) I hope that's not disrespectful, but that's who he always reminds me of when he smiles with corneal abrasions! Today I found two new sores on his chest where his Hickmann must have touched. It is hard to see his skin's new condition come and go, but Dr. Tolar thinks that by getting wounds, the news cells are forced from the bone marrow onto the body. Basically, these little dips in skin condition should equal a better long term condition.  As long as they continue to quickly heal, we're still on the right path. :)

Today there was a whole lot of this...

                                                        and this...

but we did see some of this...

and this...

   On Saturday, we went to Borders and purchased the signing book I grew up on.  It's called, 'The Joy of Signing'. I'm familiar with the book and I really like the format of it, so it was an easy pick. I haven't needed to sign in 15 years so I've been brushing up on it. You know, initially I felt fairly confident in my ability to sign for Daylon, but after looking over the book...YIKES. There are so many words that I had no clue how to sign, for example; vinegar or Korean or humble or blood pressure. I have to admit, I did have a moment sitting here on the couch  tonight were I started to feel like I might hyperventilate. :) Ha! Yeah, uh can you say "drama"?  Thankfully it lasted for about a minute when I realized that Daylon won't need to know about vinegar until Easter when the eggs come out, so I bought myself another 6 months easy.  :) LOL! The kids have learned about 15 signs this weekend and Keira and Caleb have them nailed. The twins are about 50/50, but hey, it's only been two days. Keira actually signed "Mom, I want dinner" all on her own today, so I was impressed. :)

  Our big news of the day is that Dr. Tolar wrote me this evening and said to go ahead and buy the flights home! I'm so excited! We fly in on December 20th!!! There's a lot of work to be done, but he wanted to get it done sooner rather than later. As of right now, he said we can keep Dr. Metz as his Pediatric Dermatologist back home and we'll probably work with the BMT program in San Diego.  We're still trying to hammer out the details. I have no clue where dialysis will be. Do you know that less than one percent of people dialized in the US are under 18yrs old? The pickin' is very small when it comes to find a new dialysis unit. I just hope CHOC (our hospital...Children's Hospital of Orange County) dialysis babies.  I'll keep you all updated, but I had to blurt the news!

  Here are some pictures of our Halloween.  We pushed the two Queens together, I made some ghosts, bats and spooky faces from construction paper and put them up and then we ate a picnic dinner on the beds and watched 'Mickey's Halloween Treat'. The kids loved it. Hey, whatever makes 'em happy, right?

 Keep those prayers coming! We love our support community! You guys are awesome!Sweet dreams.

If you look closely, you can see Daylon's leg. He's there...Just relaxing.

Keira's Halloween face...she really is a nice kid...promise!

Ahhhhh. I love my little Monster.

Oh! Speaking of I got to let you all in on the life of twins. Here's an ACTUAL conversation I had with the twins in the van on Saturday. They have become quite the double trouble....

Daylon: AHHHHHAHHHHHAHHH! (randomly yelling)

Me: Are you talking back there my little Monster?

Sadie: Mama! Don't call him that! He is not a monster, right Ly-lit (Violet)?

Violet: Right, Sadie Bug! Mama! Don't call him that! He is not a monster. He's a   Daylon, Mama. Right, Sadie Bug?

Sadie: Right, Ly-lit! He's a Daylon. Mama!

This is how sooooo many conversations go around here, right now. Well, I guess it's true. They are twins. :) .....and to think I doubted it.