Day +50......we had a rough night

Good morning everyone. Well, first of all I want to thank all of you for praying for Baby Dylan and his fussiness. On Tuesday, the day after I posted that he was fussy and asked for prayer.....he was like a new boy. Karyna and I were amazed at how good he was all day. He did have a fussy period from 5-8, but that was nothing compared to what we had been dealing with the past few weeks. He has continued to have "spells" during different parts of the day and none of them have any rhyme or reason to them. They usually last about 2-3 hours and then he finally calms down and goes to sleep. Yesterday was the exception. He had a rough morning at the clinic, and after two hours of crying and Ativan, he was given some benadryl and that did the trick--it allowed him to get 3 good hours of much needed sleep and calmed down his tummy. Then about 4pm, it started up again. Now, just to give you an idea of how he is acting, it is not just normal baby fussiness--it is all out crying and even screaming sometimes. He thrashes back and forth and cannot get comfortable in any position. Just when he settles down and looks like he is going to fall asleep, it starts up again. It does not matter if you are holding him, he has his binky, or if he has a bottle--nothing works. He was like this, on and off (mostly on) from 4pm-3am!!!! It was a trying night to say the very least. I think we all had pounding headaches by the time the crying stopped and I cannot even imagine how baby D was feeling. He was given meds around the clock, but nothing seemed to work for more than 15 minutes. At 2:30, Karyna, saved me from going insane and took D for the rest of the night. THANK YOU KARYNA!!! He fell asleep after his 3am meds and slept for a good 4 hours. So far, he seems to be doing ok this morning. He is completely exhausted and needs to catch up on his sleep. PLEASE, PLEASE, PLEASE, keep him in your prayers. The poor little guy is so restless and something is going on in his little body.

He has been doing so well with his counts--but this is a huge struggle. I have had numerous people emailing me and suggesting what it may be....so thank you....I just wish it was as easy as another ear infection or teething.....something that can be fixed. We are changing his formula from Soy to lactose free to see if that makes a difference at all. Also, his cultures from Monday came back showing an infection, so that may have something to do with it. The infection may be in one of his lines, so they took more cultures today and will get an answer early next week. The antibiotics are being changed once again to catch the culprit behind the infection. Please pray it is something that antibiotics can fix and that we do not have to take out one of his lines.

Well, that is just a little insight to what we have been dealing with this week. On a side note, we have really enjoyed the visitors that have come by and appreciate everything that everyone has done for us. Thank you for the cards, the encouraging emails and comments, and the tangible things such as gift cards....you guys are amazing!! We love you and I hope to have a good report for you later :) We also dressed Dylan up as a little dinosaur yesterday for the clinic's dress-up party, so there will be pictures posted later.....SOOOOO CUTE!!

We know that God has a plan in this, and we are looking to Him for strength....thank you for your prayers!!


Hope you all have a fun and safe day!!

Love
Michelle

Walking For A Cure!

Hello Everyone!

Over the past several months, our family has become more aware of the importance of finding a cure for cancer. It has impacted our lives significantly and has allowed us to be a part in helping any way we can! Donating blood, platelets and being on the bone marrow donor list are just a few of the things we can do to help.

We are doing a team cancer walk for Light The Night in honor of precious baby Dylan. We are very excited to participate and give to this wonderful organization...and we want YOU to be a part of it! They give and support families with loved ones who have been diagnosed with certain blood cancers. Michelle, Erik and Dylan have personally been blessed and supported by Light The Night and are now wanting to give back!!

Light The Night Walk is The Leukemia & Lymphoma Society's evening walk and fundraising event. It is the nation's night to pay tribute and bring hope to thousands of people battling blood cancers and to commemorate loved ones lost.

The Leukemia & Lymphoma Society (LLS) funds lifesaving research that has contributed to major advances in the treatment of blood cancers and treatments for other types of cancer, such as chemotherapy and stem cell transplants. These treatments have helped patients live better, longer lives. New targeted therapies that kill cancer cells without harming normal tissue are providing drugs and procedures that are improving quality of life.
A donation of $25 provides patients and their loved ones with FREE booklets that contain up-to-date information on their disease and help them make informed decisions about their treatment options.
A donation of $50 makes possible a Family Support group with a trained facilitator where comfort can be found and experiences can be shared among patients and family members.
A donation of $100 helps supply laboratory researchers with supplies and materials critical to carrying out their search for cures.
Please make a donation to support my team's participation in the Light The Night Walk and help save lives. Be sure to check my team's Web site frequently to see my team's progress, and thanks for your support!
If your family would like to carry a illuminated balloon and get a T-Shirt, a minimum of $100 donation is needed.

West Side Walk Information:

Saturday, November 14th 2009

Sahuaro Ranch Park
9802 N. 59th Ave.
Glendale, AZ

Walk Distance: 2miles
Check In: 5:00pm
Opening Ceremony: 6:00pm
Walk Start Time: 7:15pm


Sign Up Information:

1. Log onto lightthenight.org

2. Click the find a participant/team link located in the blue border at the top. Enter Dylans Dream Team in the team look up.

3. A list of names of participants walking with the team will appear. Click on Dylan's Dream Team located next to any name.

4. This is the team website page. At the bottom, you will see a spot to sign up. Donations can be made through all major credit cards.

There is no donation required to walk. We are trying to raise money as a team...not as individuals. You may have someone sponsor you if you'd like.

Please join us in the hope of finding a cure! Donations of any size are accepted. If you cannot walk but would still like to donate, you can do so. Thank you to everyone for your continued support of love and prayers for my family! You are truly appreciated!! Any questions, you can contact me at: melsue66@aol.com.

We will be ordering Team t-shirts...sign up ASAP so we know how many shirts to order.

P.S. Dylan-the guest of honor, may be doing an appearance! This is exciting news :)

For Him,
Dylan's Auntie Mellissa

Day +45....only 15 more days until graft testing!!

"LIKE FATHER.....LIKE SON--THIS IS THEIR AFTERNOON NAP"


Good evening everyone!! Well we have some great news!! Dylan is continuing to make his own platelets. His numbers are increasing every day! This is a sign that the donor blood is grafting and grafting well!! The doctor believes that on his 60 day testing, it will show that his cells are 100% donor!! His white count is WAY up to 10.9....which is elevated due to the steroids he is on, but still awesome nonetheless. The doctors AND mommy and daddy, are VERY happy with his progress and are excited to see what results we get in the next few weeks. This is only one piece of the puzzle. Dylan is not acting so well. He is back to being grumpy and uncomfortable for 90% of the day and is usually crying unless sedated by Ativan. This is a very difficult trial for Karyna and I, as we are dealing with the constant grumpiness and crying ALL of the time. Not only do we feel horrible for Dylan, but it is very trying on our patience, along with all of our other responsibilities. PLEASE pray that the doctors can figure out what is making Dylan so fussy....PLEASE!! EVERYONE will be happier! And I long to have my happy baby back. We have not seen too many smiles the past few days and are looking forward to having them back very soon. For now, the doc is going to manipulate a few of his meds to see if that is the problem. Dylan is finally off of his TPN!! PRAISE GOD!! That is at least one less med--and I am excited about that!! He still does not eat too well during the day, which is strange. At night, from midnight to 6am, he usually eats between 4-6 ounces! This is a great step in the right direction! Please pray that he starts to eat more during the day, and that he does not have to have any more TPN or other supplement. All in all, Dylan is doing PHENOMENAL and we are excited to be on the road to recovery. Please pray that we do not run into any more unexpected obstacles and that he will continue to feel more like himself.


I will leave you with a cute message that I got from one of my favorite people:

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Hi Meeshell.
Jake and I are having a discussion right now about how Dylan is like this little baby superhero so we're picking out super hero names for him and talking about what he would wear. Jake likes the Dylanium Falcon (after the Millenium Falcon, the ship on Star Wars), but I said it just doesn't have that ring to it. We'll work on the name. We decided he has the power to overwhelm foes with his unparalleled cuteness able to control adults everywhere, and he has the regenerative powers of wolverine, he's completely impervious to any sort of attacks. If you walk into his room and he's not there, don't panic, it's probably cause he's turned invisible, either that or he's out fighting injustice. Jake says to check baby gap for capes. I say his outfit should be tough, like maybe leather and cool shades. We could probably turn this into an awesome comic book. We'll contact Marvel, see what they think.
Praying for Dylan's continued healing, strength for you, and protection for your marriage. I love you tons.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Wasn't that cute?! I love you Em and Jake!!

Thank you everyone for your continued faith in God, and believing and praying for Dylan's healing. You all are amazing prayer warriors!! God has brought us so far, and yet we seem to have another marathon ahead of us! We are thankful that we are NOT ALONE!! We love you!!

Walking by Faith,

Michelle

Day +42.....a wonderful day!!

Good evening everyone. First thing I want to say is that God answers prayers!!
Not only is Dylan off of oxygen and eating well, but he is starting to make his
own blood products again!! This is something we have been waiting for and I am
thrilled to tell you that his platelets have been stable the past few days and
even increased today!!! His WBC is up to 4.9 and he is doing well!! The Dr G's PA, Tracey, said she may even do a cartwheel tomorrow if his platelets go up again!! When the nurse came in with the blood test results this morning-I cried out of excitement,joy, and thankfulness!! How great is our God? He is faithful and has brought us through so much!! We posted a slide show on youtube (see previous post), under Baby Dylan's Story.....and it is far from being over!! Enjoy!! We are so very proud of our lil fighter and are in awe of the miracles that God does in his life
everyday!

Hopefully we will have more great news tomorrow!! Keep praying! We love you!!

Baby Dylan's Story

Enjoy...this is his story so far....and there will be much more to come!!

Day +40.....and OFF OF OXYGEN!!

Hello!! Has it really been 40 days since his transplant??! It seems to have gone by sooo fast! And I guess that is a good thing. Only 20 more days until they do the engraftment testing. Remember that we want 100% donor cells and 0% Dylan cells--please pray for that. The doctors are confident that this will be the result, so that is very exciting. On Sunday I asked for you guys to pray that D would get off of oxygen soon....and guess what? NO MORE OXYGEN!! This is a huge praise once again. He hates having the nasal cannula in his nose and is always tugging on it and itching his face....so for now, it is gone!! Right now the struggle is eating. He seems to want to eat, but it often upsets his tummy and he ends up throwing it up. Monday he decided not to eat at all and just kept throwing up chunks of mucous. I know that sounds digusting, but its even more sad to watch. The poor lil guy just struggles and cries until he can get it out. He did that same thing tonight. Nothing seemed to make him happy and he just kept crying....and then finally...the whole once he got down earlier came back up. :( It's so frustrating for both mom and Dylan. I want so badly for him to be able to enjoy eating again and get back into a normal schedule. For now, until he starts eating regularly, the docs have him on hydration with vitamins, and are giving him steroids to make him a little bit hungrier. It's a trial and error time. Please pray that his tummy heals quickly and that he can soon eat normally and keep it all down. He gets so excited to eat sometimes, only to feel icky later. There is only so much of his sad cries that I can take...it's so hard :(
On a lighter note, he is growing well. His weight, along with fluid intake, is finally under control. He now weighs 15 pounds and is almost 25 inches tall. He is responding well to those around him and is flirting again with the nurses. He is opening his eyes more and more every day, but his left eye is a little bit lazy. We are hoping that this goes away with time--but it does not seem to bother him. Developmentally, he is pretty much like a newborn again--at least with physical strength. Before transplant, his legs were getting really strong, along with his neck and back muscles. Now, when you pick him up, it's like holding a newborn. He neck is wobbly again--I call him my little bobble head. He does not seem interested in using his legs at all and they are very weak. We know that he will have the rest of his life to regain his strength, but it is still very hard. The great thing is that he is still super cuddly and loves to snuggle!! Every time I start to get frustrated about something, he just flashes me one of his smiles and all of my worries go away!!

Well, I better get back to the munchkin, thank you for praying for our precious boy!!

Love,

Michelle

Day +37............Somebody is smiling again!

Hello Everyone! I write to you today overjoyed with the progress that Dylan has made in the past few days!! He has been EATING, SMILING, and HAPPY!!! WOWOWOWOWOW!! Praise the Lord!! He is like a new baby!! He has been eating almost an ounce every 4-6 hours. This may seem like a little bit, but it is a HUGE step in the right direction. As we taper down his TPN, he will become hungrier, and therefore eat more and will not need the IV nutrition anymore......the day is coming soon!! He has also been smiling more! A LOT more!! Not back to normal happy D, but getting there!! He was sooooo excited to see and hear from his daddy on Friday night. I have not seen such a huge smile since before transplant and his eyes opened wide to see who was talking to him! He is still not opening his eyes all of the way, all of the time, but again....he is making progress. He has been less grumpy, and he even slept for more than an hour for me last night! WOOO HOOO!! Let's pray I get another night of more than 3 hours of sleep :) His WBC was at 2200 today, which was more than yesterday....and we will continue to pray that it increases. He is still on oxygen...its been about 4 days now. He is on around the clock Lasix to rid his body of fluids, but he is still retaining a lot, therefore making it hard for him to breathe. Maybe tomorrow will be the day he gets off!! Let's pray for that!!!! He is not showing any signs of GVHD (Graft vs Host Disease), and that is a HUGE praise!! One more obstacle out of the way!! God has protected him so much from all of the things that COULD have happened and that often do to those going through transplant. All the more proof that the Lord's hand is holding Dylan through this process.

It has been really nice having Daddy around! I missed my hubby and D missed his Daddy! I feel like more of a family and less of a single mother when Erik is in town. Please pray for him as he is struggling with wanting to devote his time to us, but also trying to provide for us. His business is like a roller coaster (real estate), so please pray that God gives him a clear direction in where he wants him to go. He will be here for the next few days and we will cherish every moment with him. Even if that means me sacrificing the TV and watching sports with him ALL day long....oh how I love football, and more football, and then a little bit more!!

We are getting used to our new routine. Clinic days have been anywhere from 4-6, sometime 7 hours long....and although it seems like it takes forever, at least we are not living in the hospital. Our little Tucson condo is suiting us well also. It is quite comfortable with a lot of amenities of home....such as a fridge!! And washer and dryer! And a bed that is not hospital grade....it's the little things that I appreciate so much!

I talked with yet another family who has a baby with leukemia :( They are a friend of a friend, and they found out about a month ago. Their little one was 6 weeks old when she was diagnosed--her name is Bailey. Please pray for their family as they get ready to endure the biggest struggle of their lives. I will ask her mom if I can post a pic and her website so that you guys can pray for their family and their specific needs. Just 4 months ago I was oblivious to the world of cancer and the effect that it has on it's victims and their loved ones. I never even knew that babies could get cancer. God has opened my eyes to a world of suffering and pain that I never knew about...and maybe he has us enduring this so that we can be an encourager to other families who feel like their worlds are falling apart. God has given us another glimpse into His plan....and although we feel that we will NEVER understand....we will continue to walk by faith. This is the HARDEST trial.....and we appreciate all of your prayers and support.

Have a blessed week, and PLEASE, PLEASE, PLEASE,....hug and kiss your kids and loved ones relentlessly...they are healthy and alive and NEVER take that for granted.

Love,

Michelle, Erik, and baby D

Day +35......DYLAN IS 6 MONTHS OLD TODAY!!

HAPPY BIRTHDAY BABY DYLAN!! I cannot believe that he is already 6 months old! He has grown up so fast and has spent 2/3 of his short life in the hospital. Soon this will all be over, and he can live a normal life-a life that he deserves more than I can ever express. A life that we long for so much. Oh it will be amazing!! I am so excited!! Whenever I start to feel completely overwhelmed or frustrated, I am reminded that this is temporary, and it is not forever. We will soon be home with our pumpkin, in our house, with our dog, Lily, in our own beds.....ahhhh I can feel the comfort now..... :)

Today, Erik and I had the pleasure of talking about Dylan's story at an inspirational brunch for Keller Williams Realty. It was a great experience. We were able to hear the stories of two other amazing families and got to meet a lot of really wonderful people. One of the realtors is a friend of Erik's and she asked us speak at the brunch. Erik does not think of himself as a great public speaker, but I feel that he did really well. He stayed up late last night writing his "script" while I passed out in our bed after driving from Tucson and arriving at midnight. He had four pages typed out and just read from them when we were talking to the group. He read it beautifully. It is hard to talk about Dylan without crying, so the script helped him stay on track (with a lot of crying too :). After he was done talking, I talked a little bit about how Dylan is doing now and the next steps. Then we had a video of Dylan photos with music....it was awesome! Daddy and Ben,a friend from Northwest Valley Church, did an amazing job!! We will be uploading it to youtube soon, and will post a link on the blog.....but I am warning you....it's a tear jerker! We feel blessed that we were asked to speak today and are so very thankful to each person who was there and heard our story! Thank you for the donations, the prayers, and the support!! The Keller Williams Real Estate group really does feel like a big family!!

Now, back to the main man, Mr. Dylan! Well, he decided to start eating again today!! He ate about an ounce last night, and then another this morning, then another this afternoon, and another this evening....sounds like a pattern to me!! PLUS, he has not thrown up once!! YAY D!!! We are so proud of him!! God is answering prayers everyday and we are blessed to be able to see them! He is still on TPN, and as his eating continues, his TPN will taper off and then soon he will be OFF!! YAY! One less med to give and no more carrying around a fanny pack with TPN! YAY YAY YAY!! Oh, and did I mention, YAYAYAYAYAYAY!!! D's WBC was 2.0 today. This is disappointing to me, but the docs say it's normal...and I suppose they know what they are talking about :) The Doc is happy as long as it is over 1.5, so I guess we can be happy too! He is in great spirits today!! He is even opening his eyes! He has been so cranky and uncomfortable lately that he has not been opening his eyes much. Maybe that phase is over--I sure hope it is. He has been smiling more often and seems more alert. His voice is a little muted. He always seems to have voice problems after getting anesthesia because they have to put the tube down his throat. Hopefully it is very temporary. Other than that, things are going ok. He has not been sleeping very well at night. He definitely has his days and nights mixed up, but it's normal for babies who spend so much time in the hospital. So for now, I just have to adjust and try as hard as possible to sleep when I can. I am thankful that I have help from family, because the past few days I was a walking zombie and the nights that I can sleep are VERY MUCH NEEDED!! Thank you family!! Erik's mom and dad just left a couple of hours ago and my mom and her husband,Lee, are coming tomorrow-- we are excited to see them!! (and excited for another break!) Erik is also down here with me now for the next few days!! He had not seen Dylan for almost 3 weeks because of him being sick, so he was excited to see the little guy!! And when Dylan heard his voice, he opened his eyes really wide and gave his Daddy a long awaited smile....so cute!!

Well, I better get going and try to get my little one to sleep and tuck in my big baby who has fallen asleep with the TV on.....oh how I love my boys!!

Have a GREAT WEEKEND!!

Walking by Faith,

Michelle, Erik, and Baby Dylan

Day +32....our 4 month anniversary

4 months ago today, Erik and I received the worst news of our lives. I can still hear the doctors words and the crushing feeling that I felt. WOW....has it really been 4 months? I remember getting "the talk" about all of the negatives and reality of what may happen....that Dylan's chances of surviving were not good. AND LOOK where he is today. God is so GOOD!! He brought us out of the devastation and into hope. Hope that only He can provide. Sometimes these past 4 months seem like an eternity, but in the big scheme of things, it is such a short time. We still have a very long journey ahead of us and want to thank you for enduring this trial with us. We long for the day when we can safely say that Dylan is 100% cancer free...I pray for that moment everyday!! Until then, we take today as a challenge to get through and thank the Lord for giving Dylan life.

Day 32 and Dylan is fighting hard! He is still a different baby. Still grumpy, still very weak, but also fighting hard to get better. His cell counts are continuing to increase...I don't quite believe Dylan's number for today, so I am going to keep it a secret until I hear his number tomorrow :) BUT I will tell you that his WBC was 2900 on Monday....and that is all I will say for now. Today we spent 7 hours at clinic.........oh what a LONG Day!! There is only so much of the hospital that I can take, and I am WAY past that point. Regardless....we gotta do what we gotta do! Dylan has been hungry that past couple of days and has tried to eat a few times, only to throw it up 5 minutes later :( This is going to be a long and frustrating process to get him to eat....please pray specifically for this to be over soon. He also is throwing up a lot more mucous which is good, because that means that his cells are reproducing and making his mucous membrane again. The throwing up part is not so much fun, but it should not last too much longer. Dylan is once again on oxygen. Today, at clinic, his sats were showing that he was at 60% oxygen....not good...so hopefully he will get his sats back up so we can take this silly thing off again. The positive thing that happened today was that he SMILED!!! Not just a little smirk, but a full smile!! It was AWESOME!!! He is still not opening his eyes all of the way yet, but he is attempting to open them at least half-way. I cannot wait to see more and more smiles as the days go on. He did not get an MRI on Monday because the Dr wants to wait, so I will let you know when that is happening. All in all, D is doing well, and is staying on track with what the Docs expect to see. PLEASE pray that he continues to FEEL better. He gets so cranky sometimes and nothing seems to help! Not even the magic warm towel!! He is still hurting inside and has no way to tell us what is wrong, so he just whines and cries. It is so sad.
But this too, shall pass--I'm just praying it passes quickly :)

Thank you for your continued prayers!!

Goodnight :)

Michelle and Baby D

PS- Erik is feeling better and should be able to visit this weekend!! YAY!!

Day +30...Thanking God for warm towels!!

Good evening everyone! Well, we are at day 4 at "home" and so far, so good. The medicine routine is almost perfected. After I am done writing this, I will be preparing all of the meds for the 7 pm doses. I think the hardest thing is making sure I have enough flushes ready for everything. I can't even begin to tell you how many I have gone through!! Last night, Mandy was here, and I had her prepare all of the flushes and inject the vitamins into the TPN. Then she administered all of the meds through his IV and then flushed them when she was done!! She is going to nursing school and thought it was really cool!! Plus, she did an awesome job! She has already learned so much from Dylan, and it makes her want to be a nurse that much more. She cannot wait to take care of people and be an amazing nurse just like the ones we have been blessed with!!

Speaking of great nurses, one of our favorites from Phoenix, Alison, was in Tucson for the weekend, and came an visited us yesterday!! Isn't that sweet??? It was really great to see her and it really made an impact on me....and of course baby D (even though he was asleep, he loved seeing her!! ha!). The clinic that we go to everyday is just down the hall from the place where we have been staying the past 6 weeks, so I am able to go over and talk to D's nurses. Everyone at UMC has been so supportive and helpful. I even have nurses bringing me seasons of their favorite shows!! Thanks to Kelly, I am now officially addicted to ER--currently on season 4--only 11 more to go!! And I will soon be hooked on Grey's anatomy, thanks to Taryn!! You guys are AWESOME!! We even received some DELICIOUS chocolate chip banana bread from Kathie!! We are sooooooo spoiled and blessed!

This weekend has been wonderful with my sisters here. It's like having my own personal chef and personal organizer for the weekend. Mellissa made yummy Olive Garden soup last night, along with some chicken tortilla soup today that will be ready and waiting in the freezer for us when we need it. The next items on the menu are stuffed shells and pot stickers....Mel, you are AWESOME!! Mandy is the organizer, and when she saw the mountains of medical products, she looked like a kid in a candy store! Now, all of the syringes, needles, and medicines are neatly organized with coordinating labels!! The condo is clean, laundry is done, and all of the bags and boxes are unpacked!! What a stress reliever!! I love you guys!!!!!

Today was day 3 in the clinic, and since Dylan did not need any transfusions, we were in and out of there in 3 1/2 hours!! Not too shabby. Tomorrow is going to be a MUCH longer day. Dr G wants him to get an MRI to just double check everything and make sure that there are not any problems from some of the stronger meds. MRI means anesthesia :( I am not looking forward to it, but it is good for him to make sure that there is nothing abnormal. Please pray that D handles the anesthesia well and that it does not make him feel worse than he already does. He seems to be feeling a little bit better. He is not as crabby and is actually awake without crying for short periods of time. We have found a solution to get him to sleep. WARM towels or blankets!! It's like magic!! The second you wrap him in a warm towel, he immediately calms down and passes out....it's actually quite funny!! I am thankful that we have found a way to make him feel comfortable without having to drug him up all of the time. He still needs to have Atavan at night sometimes to calm down and control his pain, but overall, he has been needing less pain meds. He has been getting some good sleep the past couple of nights also!! And that means I am too!! YAY!! On friday night, he slept from 1:00am-8:00am and we had to wake him up to go to clinic. I thought it was a fluke and was sure it was not possible to happen again, but it did! Last night he slept from 12:00am-7:00am.....what a blessing!! Thank you Lord for letting us sleep well!! We are trying to get into as much of a routine as possible. After meds are done, he gets his bath, and then his line care. Usually after that, he is awake for about an hour and then I lay him in his pack'n'play. He is awake when I lay him down and he usually fusses for about 5 minutes and then falls asleep. I am thankful that he is able to go to sleep on his own for now, and that he is in his own bed!!! This way, we both get sleep!!

Well, I better get started on the med prep right now :) Thank you for your continued prayers!! And please keep Erik in your prayers. He is home alone, and sick, and missing his family and there is not ANYTHING I can do to help him :( It's tough and we miss him!!

Goodnight

Day +28.........out of hospital!!

Hello Everyone!! Well, we are out!! YAY!! Yesterday was one of the LONGEST days of my life.....but we made it!! I think Karyna and I finally made it to bed at 2am!! To say last night was overwhelming would be a HUGE understatement!! After moving things from the hospital and all of the paperwork, I was exhausted. Then we had to still have the home health nurse come over to show me how to give him his 7 meds!! Not only do I have to just give them to him, I have to prepare them. Let's just say that I probably completed a whole nursing IV course in about 2 hours!! It was a terrible and exhausting night, but everyone lived and Dylan got the meds he needed. We got to the clinic this morning around 10 and at that time I had about 2 hours of sleep between Dylan not sleeping and all of the other medicine drama. When we got there, they were not surprised at my lack of sleep. They said that first night is always the worst. AND THEY WERE RIGHT! Tonight, there was about 10% of the stress and I was able to do everything that I was taught and did not freak out as much. It was almost fun.....ALMOST I SAID. :) Dylan has now 6 nightly meds, one of them is oral, and the others are all IV. He also has 3 other pain killer/nausea meds that I have to mix with saline in syringes if he happens to need them. It looks like a hospital in our living room and I think I have gone through 100 saline syringes already!! Good thing we have good insurance that pays for all of this fun stuff!!

Dylan is doing better with his ear infection. He is no longer crying incessantly, but only intermittently. He is still not feeling like himself. I have not seen a smile for days and we are lucky to see his eyes fully open....most of the time they are open just barely enough for him to see what is going on. The poor little man is just fighting so hard on the inside and outside!! The good news is that his white count continues to go up without the help of medicines, and he is holding onto his platelets and red blood cells longer. We will find out tomorrow if he is producing his own yet---it still may be too early, but with Dylan, and GOD, ANYTHING IS POSSIBLE!! He did well in clinic today. The pic of him in the chair is from today in clinic. He mainly slept (because he did not sleep at night!) and just relaxed while they gave him his medicines. We were there for 4 hours today and expect to be there about 6 tomorrow, if he needs any transfusions. The doctor is looking into dropping one of his meds that may be causing the grumpiness. It is a med that protects against Graft VS Host Disease, but the doc does not feel that D is going to get it. SOooooooo please pray that they can drop it. I would love that and it would make D feel so much better.

Karyna is going home for the weekend and Mellissa got here this afternoon! It is so great to have the help!! We are blessed beyond measure with amazing family!! I can always count on them and I love how all of our relationships have grown because of this tragedy. My other sister Mandy and her boyfriend Josh are coming tomorrow, so it will be great to have the company!! Everyone has been so supportive, both family and friends, and even strangers--I cannot say THANK YOU enough!!! Thank you for keeping us in your prayers!! Here are a few specifics:
--Pray for Erik, he is still really sick and may have to go back to urgent care.
--Pray for me as I am overwhelmed with a lot of responsibility and that I lean on others to help me. I have a problem--I don't like asking for help!! :)
--Pray for Erik and I as a couple that we can keep our marriage strong even with all of the stress
--Pray that Baby D starts to make his own blood products and that we can figure out a way to make him feel like himself again!!


Those are just a few for now!! We love you all!!

"My body and my mind may become weak, BUT God is my strength. He is mine forever."
--Psalm 73:26


Love, Michelle

Day +26.....Ear Infection

***PLEASE SEE UPDATED ZIP CODE FOR CONDO, I WAS GIVEN INCORRECT ZIP FIRST TIME, IT IS 85745. THANKS EM FOR CATCHING THAT :)***

Hello Everyone.....baby Dylan has an ear infection. :( At least we know what has been causing him to be in pain and why he has been being so cranky. The past few days the Dr. has been boggled by what medicine is causing him to feel icky, and all along it was a "normal" pediatric problem--go figure! He has been put on another antibiotic that will hopefully help him to start feeling better tomorrow. These past few days have been REALLY tough. He has been whining and crying non-stop and has not slept very well. I AM SOOOOOOO THANKFUL that Karyna has been here to be my help mate, because I am not sure I would have been able to get through these past couple of days on my own.......let alone, this whole process. Erik is still sick and will not be able to join us for at least another few days. He thought he was feeling better yesterday, but woke up feeling horrible today with a bad head cold. Please pray that he will start to feel better soon--he misses Dylan soooooo much!! We are very thankful that the Lord has protected me from getting sick these past 4 months, and please continue to pray that God keeps the germs that are all around me from making me sick.

GOOD NEWS-We are scheduled to get discharged from the hospital tomorrow!! YAYAYAYAYAY!! I have been moving things into our new "home away from home", and we are looking forward to some normalcy. I was able to go grocery shopping today for the first time in a LONG time, and it was actually fun....I spent way to much money, but had fun!! It's hard when you have to get a lot of the basics and I'm starting from bare cupboards. My sisters are coming down this weekend and we are going to cook a few meals and then freeze them so it is easier for Karyna and I to have quick dinners. My sister, Mellissa, is one of the greatest cooks I know!! I am sooooo excited to have some of her yummy food. I am also looking forward to being able to spend some time with them OUTSIDE of the hospital and for them to spend time with Dylan.

For those of you who want to visit, we will have to try to plan something. I will see how this week goes with clinic visits and see how long I am usually there. I cannot have visitors in there with me, and I would hate to have you meandering around Tucson until we get out. But I am sure we can work out something. A lot of our family will be coming down on the weekends, so if you can do weekdays, that would probably work better. Please email me if you are planning on visiting so we can work something out :)

Please keep Dylan in your prayers tonight--his ear infection is really hurting him, and that is ON TOP of all of his other "issues". Also, please continue to pray that he keeps reproducing his white cells and starts to create his own blood products. Platelets are usually the ones that take the longest to make, but he should be making his own red blood cells soon. He is off of nuepagen, which is a medicine that helps him create white blood cells. Since he has been off the past few days, his WBC has dropped to 2500 which was to be expected. He is still out of the danger zone with his counts and he should continue to increase over time, just not as fast. Any count over 1500 is fully functioning and the doctor is very pleased with his progress. As long as we can get this ear infection under control, Dylan should be feeling well in the next few days!! I CANNOT WAIT!! We need our smiley boy back!!

THANK YOU for keeping baby D in your prayers!! We love you!!

Walking by Faith,
Michelle, Erik and Baby D

Day +24

Hello Everyone! I hope you had a wonderful weekend! I know I did! We all had a great time at the wedding and everything went perfectly. Renee was GORGEOUS, Mark was handsome, and they are now Mr. and Mrs. Henderson! Congratulations guys!
Erik and I had the pleasure of going to church together on Sunday. It was the second time we have been able to go, as a couple, since Dylan's diagnosis....that's almost 4 months!! I have really missed going and it was great to see my church family and worship with them. Pastor Skip had Erik and I come to the front to talk about baby D. Erik talked a little bit and then handed the microphone over to me. How was I supposed to talk without crying? So I just talked while crying...I think people could decipher a few things that I said. :) After service we were given lots of hugs and a lot of encouragement--it was AWESOME--our support group is AMAZING!!!

Baby D is doing well. His white count is progressing beautifully!! On Sunday, it was 3000 and today he is at 4300!!! WOW!! Praise God!! He is really working in his little body!! Dylan has had a rough day today that has continued from Yesterday. He is very cranky, which is VERY unlike him, and he can not get comfortable or fall asleep. He has had probably 5 hours of sleep in the past 24 hours and is overly tired. He has been given meds to help him calm down and also Morphine for pain, but they do not seem to work. Please pray for him tonight. He needs some sleep so badly and his little body is trying to tell us something--we just do not know what! If only he had a diagnostic computer in him that could tell us exactly why he is hurting and what is wrong....poor little guy!! We gave him a bath at 5pm and he threw up some stomach acid after bath and that seems to have helped a little. He has been sleeping for the past hour and will hopefully get at least a good couple of hours of rest. He is still not interested in eating. This is disappointing to me, but I know it is normal for kids who have gone through this much chemo and transplant. It may take up to 6 months!! Please pray that his appetite comes back soon and that he can digest the food he is given. We were originally scheduled to get discharged tomorrow, Tuesday, but he is still needing the help of oxygen every once and a while and the doctors want him acting as normal as possible before releasing him. So we may be here for a few more days.

We found a place to stay for the next couple of months. It's a cute little condo with plenty of space for all of our "stuff". Babies come with sooooo much stuff! Ha!! And I guess I do too!! Many people have been asking for an address to send cards to, so here is our new address :)

Michelle Praskins
101 S Players Club Dr #28102
Tucson, AZ 85745

Some people have also been asking about how they can help tangibly with finances or gift cards. Right now, gas cards are needed. Gas is expensive and we want to be able to help our family come down and visit also--so gas cards would be greatly appreciated. I know for sure they have Chevron and Shell Gas stations. :) If you want to send a grocery store card, Fry's or Albertson's is good. THANK YOU!!!

Thank you to everyone for your encouragement through hugs, care packages, notes, cards, emails, and facebook messages! You guys help us more than you can ever know!! I hope to have great news tomorrow about going home soon! Until then, have a great EVENING!!

P.S. Please pray for Erik, he is not feeling well and went to urgent care today. Because of Dylan's delicate immune system, we have to be EXTRA careful about being sick. They tested Erik for the Flu and Strep, but the tests came back negative. They said that he may have the early stages of the flu and gave him some medicines that should keep it from getting worse. He has not seen D in 2 weeks and is disappointed and sad, but he should be able to come down later this week. Thanks for the prayers!!
Love,
Michelle

Day +21....2700!!!

Hi guys!! I am writing this update from Phoenix at my home computer....and it feels very strange. I am home for the weekend with my hubby for my brother's wedding!! Congratulations Mark and Renee!! They will be getting married Saturday morning, and we are all very excited for them. It will be a fun time of celebrating and seeing family and friends. We are very sad that Dylan will not be a part of the celebration, but he will have everyone there cheering him on! Renee, the gorgeous bride, will be wearing a Dylan bracelet on her ankle and all of the groomsmen will be sporting the stylish orange accessory under their jackets!! So, in a way, Dylan WILL be there. By the way, if you have not gotten a cool Dylan bracelet and would like to have one, just send us self-addressed, stamped envelope to the address in the right hand column! We would love to send you one!

This weekend Dylan will be spending some quality time with his Auntie Karyna. She has been such a blessing and a lifesaver! She hates to be the center of attention and will probably not like me saying all of this about her--but oh well!! She deserves the praise! She has been switching off nights with me, so that we both get a good nights sleep every other night. This is not something that I have asked her to do, but something she insists on! She is amazing and we are beyond thankful for her! I LOVE YOU KARYNA!!

Dylan is continuing to increase his WBC every day!! Yesterday he was at 2100 WBC, and today--2700!! Way to go Dylan! He is still on the oxygen, and the level is at the lowest possible--0.1--but he still wants to hang on to that extra help. He has been less congested lately and the Dr. feels that once that goes away, then he will be fine. We attempted to feed him yesterday. He has been on TPN for about 3 weeks, and has not had any bottles. We tried feeding him a little bit of water first, to see how he would react, and he did not like it too well. Today I fed him some soy formula mixed with rice cereal and he seemed to enjoy it. He drank about an ounce, and then waited for me to leave until he threw it up on Auntie Karyna....at least he tried :) We will keep on trying! He will eventually want to eat again. Some kids take as long as 6 months to want to eat again and to get back to normal eating habits. The Dr. said that all of the kids are different and babies always seem to do better with eating. Please pray that Dylan's appetite comes back quickly so he can get off of the TPN.

We are still scheduled to go home early next week--YAYAYAYAY!! We have found a place to live that is close to the hospital, but still has a "normal" feel to it! We are excited to get out of the hospital, but apprehensive at the same time. Although we will be leaving, we will still be coming to the hospital daily for clinic visits that can last anywhere between 4-8 hours!! FUN FUN!! This is where he will get his blood drawn and get any transfusions or medicines that are needed. 90% of his medicines are given by IV, so I will be in charge of being nurse mommy again, and will have to administer the meds at night. SCARRRRYYYYY!! Although I feel that I am competent enough to handle this task, it is always frightening knowing that I am injecting drugs STRAIGHT into his bloodstream!! May God protect me from ever making a mistake! The nurses have been showing me how to extract meds from the glass medicine vials with a needle and syringe--it's a lot of fun! BUT I am sure that I will end up poking myself somehow...hopefully not. We are hoping to be able to get D on a schedule along with ourselves. It will be nice to be able to cook dinner once again and go for a walk outside. These things may sound so simple, but they are pleasures that I have not had the past 3, almost 4 months!!

Since I will be here for the weekend, I will not be updating the blog until Sunday night :) So don't worry if there are not any postings until then...if something is wrong....we will post it! In this case, no news will be good news!!

Thank you all for being so supportive!! It's amazing to me how many people read and follow Dylan's blog and listen to me babbling on! Dylan is loved!!

Love
Michelle