Day +19...still going strong!

Good evening or good morning....whenever you happen to be reading this. We have some wonderful news about Dylan's counts...they are continuing to go up at a steady pace!! It is very exciting!! Yesterday he was at 900....and today he was at 1400!! God is really working in his little body...PRAISE GOD!! We still have a LONG road ahead of us, but we are on the right track.

Part of me, the mom in me, just wants to know for sure what the outcome will be. Will he be healthy someday? Will he have any problems? Will he survive this journey? But God reassures me that today has enough worries of it's own. I cannot worry about the future, about tomorrow, but I have to focus on today....as hard as it is. I would just love to know!! Ahhhhh!! So that was my little tangent for today. It is something that I have really been struggling with lately. I just want to know--for certain--if my baby is going to be alright, and survive this thing. All I know for certain, is that I have an ALMIGHTY, POWERFUL, LOVING God, who is watching over every tiny detail and in control of it all. I put my faith in Him. I believe that He is healing Baby D this very second-He is more powerful and more magnificent than I can even comprehend. Thank you Lord for taking care of Dylan!!!

Ok, well back to Dylan. He is doing 100% better than he was on Saturday and Sunday. His breathing is back to normal, but for some reason he still wants to hang on to that oxygen and does not want to give it up quite yet. We are hoping to be off by the end of the week. He is still sleeping a lot, but it is just his body's way of playing catch up. When he is awake, he is soooooo smiley!! And he even giggles every now and then. He is all smiles until I pull out the camera! HA! We have ruined him! He dislikes the camera very much and almost glares at it every time! It is quite hilarious! So I have to sneak in pictures when he is not looking...I wish you could see his BIG smiles!!

Well, I am off to bed. Please continue praying that Dylan's body keeps making progress daily and he can feel like himself more every day!! You guys are amazing prayer warriors and God is hearing each and every one of the prayers!! We love you!!

Walking by Faith,

Michelle, Erik & Baby Dylan :)

I could not sleep.....

I am at the Ronald McDonald House trying to get a good night of sleep, while Auntie Karyna is with my precious baby. I don't like being alone. I want to be with my baby, and I want to be with my hubby. I was having a hard time falling asleep....just thinking about everything, so I turned on my IPOD and started shuffling through songs...this one came up...one of my new favorites...HEALER, by Kari Jobi. I just got on my knees and cried to God....only He knows how I feel, and only He can heal my broken heart. Anyways, I hope that these lyrics might encourage you as they have encouraged me...with God, there are no limits.

YOU HOLD MY VERY MOMENT
YOU CALM MY RAGING SEAS
YOU WALK WITH ME THROUGH FIRE
AND HEAL ALL MY DISEASE
I TRUST IN YOU, I TRUST IN YOU

I BELIEVE YOU'RE MY HEALER
I BELIEVE YOU'RE ALL I NEED
I BELIEVE

AND I BELIEVE YOU'RE MY PORTION
I BELIEVE YOU'RE MORE THAN ENOUGH FOR ME
JESUS YOU'RE ALL I NEED

NOTHING IS IMPOSSIBLE FOR YOU
NOTHING IS IMPOSSIBLE
NOTHING IS IMPOSSIBLE FOR YOU
YOU HOLD MY WORLD IN YOUR HANDS

YOU'RE MY HEALER




If you get a chance, listen to this song sometime. It is absolutely beautiful!! He is our healer, and nothing is impossible for Him. Dylan is living proof! Goodnight.

Day +17.....a day of rest

Hello!! Today we are at 800 WBC!!! Woo hoo!! Way to go baby Dylan!!! He is doing so well with his counts....now all we need to do is to get the breathing thing down and we will be good to go!! Seriously, good to go.....out of hospital! That is the plan. Until then, Dylan will be working on breathing on his own.
Today he has done much better. His oxygen has been turned to a lower level and his breathing has been consistent throughout the day. His resp rate has been between 50-60 (we want it under 50), but he still needs the help of the extra oxygen. His little body is so tired from overworking itself the past couple of days, that he has been sleeping almost the whole day. He woke up during bath time, which is his favorite part of the day, but then went right back to sleep afterwards. Then he woke up this evening for about 30 minutes. And those were my favorite 30 minutes of the day. He was being really silly and REALLY smiley!! Such a blessing!! I think all of the smiling wore him out, because soon after, he started dozing off, and was quickly back asleep. We enjoyed every second of the awake time and will hopefully get some more time tomorrow. For now, we are thankful that his body is able to rest and catch up on some much needed sleep.
Thank you for your prayers tonight! Please pray that he can get off of oxygen completely, and breathe on his own. I can't wait to see what the counts are tomorrow!! It's so exciting!! God is creating new life inside of baby D....simply amazing!! Have a GREAT Tuesday!!

Love,
Michelle

New Layout, courtesy of Kelly

Hey Guys!! What do you think of the new layout? I wish I could take responsibility for it, but I cannot. The creative genius behind the creativity is Kelly Oxborough. She found our blog from another person's blog, and then volunteered her creative services to "spice" it up!! God provides in so many unexpected ways!!

Kelly also has a side business of her own where she makes affordable invitations for every occasion imaginable. I was looking at her samples online and they are beautiful!! So, if you have a need for invitations, check out her site.

www.yourlifelongmemories.com

Thank you Kelly for spicing up our blog! We love it!!

Pampered Chef Fundraiser by Arlene Wilhoit

Here is some info from Arlene :)

Here is where you can help. By purchasing Pampered Chef products, you will help to raise money to cover costs of medical bills and so on . I know most of you may not know them, but they need all of our help! If there is any Pampered Chef item that you need, now is the time to buy it, even if its just 1 item. I will not be making any money from this (I will be donating all of my commission to them also), and this is truly being done to help the Praskins family.

There are a couple of ways to go about ordering.
1. You can email me your order and I will have it shipped directly to your house
-or-
2. You can visit my website. www.pamperedchef.biz/cooking4emma Choose "shop online" in the bottom left corner. You will be prompted to type in a name...Baby Dylan is all you need to put in.

I know that right now times are tough, so we need as many people to hear about this as possible. I need you to send this to everyone in your address book. Please ask everyone to continue to forward this on.

Sincerely,
Arlene Wilhoit
Your Pampered Chef Consultant
602-446-1461
cooking4emma@hotmail.com
www.pamperedchef.biz/cooking4emma

Without you I have no business in the kitchen!

Our tools will change the way you cook, and our business can help you live your dream!
Call our opportunity line for a pre-recorded message 1-866-837-8032 access code 1095577
AND THEN CALL ME

Day +16 ...still on Oxygen

Good evening everyone. Thank you for praying for us last night. It was a bad night. I think I just needed to cry and last nights events put me over the top. There's nothing as horrible as watching your baby fight to breathe. His respiratory rate got to be over 100 a few times, which is WAYYYYY higher than it should--normal should be around 50. His little lungs were working overtime all night long. This morning he was able to get a little bit of a respit after we sucked some huge boogies out of his nose. He is still congested, but not as much. The fluid overload is playing a big part in the labored breathing. His weight has gone down about 1 pound since yesterday afternoon and that has helped release some of the pressure. He is still very uncomfortable when he is awake. He has been on Adavan around the clock since yesterday and that has seemed to help him. He has to stay as calm as possible, or the breathing will just be intensified and harder for his lungs to keep up. With the help of the released fluids and boogies, Dylan seems to be stable at this point. His resp. rate is still high, around 70, but much better than 100+!

The good news from today is that his WBC is at 700!! We are so excited that his body seems to be responding well to the transplant (besides the breathing problems). We asked the Dr how he knows that it is the donor's cells reproducing and not Dylan's. He said that in the rare case that it happens, the child's WBC comes back much slower and would not be showing Dylan's numbers. He said that it would take at least 30 days to get to 400-500, so he is confident that Dylan's growth is from the cord blood. PRAISE GOD!! It's incredible how the human body works!! Absolutely amazing!! The Dr also said that if Dylan is stable in the next week and can get off of oxygen, then we can be released as soon as a week from Monday!! That would be AWESOME!! PLEASE pray that his body is able to release the mucous and fluids so that his breathing can get back to normal....that is a HUGE prayer request. We are hoping to have an uneventful night, full of sleeping!! We need it!! We are thankful for the wonderful nurses that we have here to take care of us! God has provided some really knowledgeable and fun people to take care of Dylan and not to mention his genious Dr and his staff!! We love you guys!! And we miss our St. Joe's nurses and staff....it's crazy how attatched you get to everyone....but I guess it's not a bad thing :)

I am going to be posting some info on a fundraiser and also a cancer walk if anyone would be interested. Details later to come. As always, Thank you for your love and support! I hope you had a great weekend and are ready for the crazy week ahead!! We love you all!! Even those of you whom we have never met ;)

PS...also be looking forward to a NEW LOOK to the blog! A wonderful woman, Kelly, has volunteered her serviced to make over the blog and it's going to be adorable!! Thank you Kelly....you are AWESOME!!

Under His Wing,

Michelle

Day 16: Labored Breathing

Dylan had a very rough night and continues to breathe very heavily.... his respirations are very high and the doctors are concerned that if it continues at the high rate, his lungs may give up and he would have to be intubated. Another chest x-ray was taken and his lungs are basically clear....so he doesn't have pneumonia. A respiratory therapist came in and sucked some more'buggers' out of his nose hoping that would help unblock his airway and help his breathing. A blood test was taken to check the amount of oxygen in his blood. Please pray that Dylan's body will calm down and that his respiration rate will reduce to the proper level so he will not overwork his lungs, forcing him to be intubated. We love you all.

Day +15....movin on up!!!

Good Evening everyone.
Hi. This is Erik. Today has both good and challenging news. Dylan is having a hard time breathing today and is very restless. The fluids in his body are causing extra pressure on his lungs and making it difficult to breathe. He also has some mucous in his right lung. Please continue to pray that his body will handle the many fluids he is receiving and that he can breathe easier. It is a delicate balance of receiving the needed fluids without overwhelming Dylan's body. It is going to be another long night for Michelle as she cares for Dylan. The good news is that Dylan's white blood count is continuing to go up..... it was 0.4 this morning and went up to 0.6 this evening. Dr. Graham is very encouraged about this. We are praying that they continue to go up.

Day +14....quick update

Good evening everyone!! GREAT NEWS!! Dylan's WBC went up to .2 or 200 this morning!! This is a huge milestone! We serve an all-powerful and amazing God-and we praise Him for this victory!! This afternoon's blood tests showed his levels at 300, but that will most likely go down in the morning....but we will see!! Thank you for your continued prayer. Dylan is making progress and we could not be more excited about it!!
One more thing to add to your prayer list: Dylan may have an infection in his gut. Last night he was up all night with gas and painful bowel movements and those continued on throughout the day. He was pooping almost every half hour and every time he did, he cried in agony. The poor little guy was in so much pain. We were able to increase the morphine dose to help with the pain, but he still wakes up crying every time he has to go. They took samples today in hope of finding out what could be causing the irritation. They also put him on a medicine that will combat a common form of infection, C-Diff. Please pray that this irritation will go away quickly and that he is not in a lot of pain tonight. He really needs to get some good uninterrupted sleep, so that his body can heal.
Karyna is staying with Baby D tonight, so I have to make this short so I can get some sleep! Yay!! Daddy, Grandma, and Grandpa are coming tomorrow, so we will be having a fun filled day spending time with them. I hope to have great news about his counts tomorrow!! As always, THANK YOU THANK YOU THANK YOU THANK YOU for your prayers!! They are being answered!

Love, Michelle

Day +13

Hello all! Well, I do not have any exciting news today :( This morning, Dylan's WBC was still at .1 like yesterday and went up to .2 this afternoon. It is normal for this to happen. The doctors do not get excited until they get the same numbers two times in a row. Sooooooo....let's just keep praying that tomorrow it will be at .2 or higher. There is no pre-set time when counts go up. Every person is different. We will just keep praying and praying, knowing that God is in control of every single little detail, down to the number of cells that grow each day-and HE is orchestrating it!! So for now, we trust that God is working in his little body. At day +60, they start to do engraftment tests to see if the transplant has worked. The tests will show how much of his cells are his, and how many are the donor's. We want them to be 100% donor and 0% Dylan. Until then, we wait for his counts to come up. We need prayer that he does not get GVHD (graft vs host disease), and that he can avoid all of the other complications that can come with transplant.

Today has been a good day so far. I was blessed by getting 10 hours of sleep last night!! OH WOW!! Thank you Karyna!! I was a new woman this morning and even dried my hair and put on make-up!! Woo hoo!! Karyna is awesome and storing up a lot of treasures in heaven!!
Dylan seems to be feeling better and has been smiling a little bit more. He received more platelets yesterday and is getting some more tonight. It is perfectly normal to get this many platelets after transfusion and he will continue to get the many transfusions until he starts to make his own platelets. Here's a fun fact for you--Your body makes new platelets for itself every 3 days. Did you know that? No wonder D has to get so many transfusions-he is getting someone's half-used platelets, and if his body does not like them, then it disposes of them and asks for more. I learn something new every day.

We will probably be staying in the hospital for another 2-4 weeks. Dylan will be healthy enough to get released from the hospital when his counts are stable and increasing....OH how I cannot wait for that day!! After we are out of the hospital, we will have to come in daily for clinic visits. The first two weeks of visits can last anywhere between 3-6 hours, depending upon how many medicines he needs and if he needs transfusions. Then from there, also depending on his status, his visits will get shorter and less frequent. We are hoping to be able to go home to Phoenix before Thanksgiving!! We will probably have to see Dr. Graham once a week for almost a year! So that means driving to Tucson once a week, every week, until next year. We have a LONG road ahead of us!! But as long as we have that road to travel, we will be happy :) That is a brief synopsis of the next few months and what may be happening...of course, all of this is subject to change. I am just excited to get out of the hospital!! Even though we will still stay in Tucson and I have to go back to the hospital everyday, we won't be living at the hospital, and life will be a little more normal.

Thank you to each and every one of you who gets excited everyday to see what God is doing in little D's life. It's amazing to see how God has used Dylan to touch the lives of others...and we love to hear the stories, so thank you for sharing them with us. We appreciate all of the love, prayers, and support that we receive everyday....you guys are amazing!! We love you!!

Not walking this road alone,
Michelle, Erik, and Baby Dylan

Day +12

This how Dylan likes to have his oxygen--airing out his forehead :) He is not a big fan of the oxygen and the little prongs that have to go in his nose, but he is doing a lot better with it than before.




Today is DAY +12......WOW!! I cannot believe it has been 12 days since transplant!! These past 12 days have been rough....they have been draining....they have been painful....but things are starting to get better!! On Sunday, Dylan's white blood cell count (WBC) was .05--which translates to 50. Yesterday, his WBC was at .1--which is 100! This was exciting to us, but the doc said that he would not be excited until he saw 200. We were hopeful this morning that we would get great news of his counts going up....but they were still at .1 or 100. When I heard the counts this morning, my heart ached and I was disappointed. I want so badly for him to start getting better, and get on the road to recovery. The doc says that most kids start to get their numbers up around day 14, but we were all hoping to see some improvement sooner. This evening, we got an answer to prayer!! They did some blood draws this afternoon and checked his counts again, and they were at 400!! WOOOOO HOOOOO!!! Unfortunately the doc did not believe the results so he had the lab re-run the tests. The second results came back in at 200!! We are still very excited about these results and are praying for even larger numbers tomorrow. If they do not change, we are still thankful for increase. We continue to pray that God will heal Dylan, and heal him quickly. It's going to be like Christmas morning, every morning, as I wake up, anxious to hear the results of the morning blood test. Please pray that tomorrow his counts stay at .2 or get even higher....that will be such a wonderful thing to look forward to! God has been so good to us. That news today was one of the greatest things that I could hear!

Other than the exciting news, today has been a typical post transplant day. Dylan seems to be doing better with each passing day. He continues to have trouble breathing because of the fluids, and has been on oxygen most of the day. He is finally realizing that he has to keep the oxygen on and has stopped yanking it off every five seconds. Now he only pulls it off every hour or so...he is pretty sneaky. His throat is healing well and the doc feels that he will probably be eating again next week! AWESOME!! It's so strange not feeding him all day...very strange. He is still having a lot of pain INSIDE his body. He is very sensitive to touch because of all of the fluids he is retaining, so I have to be very careful when I am holding him. He also screams in agony every time he has to poop. It's heartbreaking. This pain is coming from the sores that are INSIDE his GI tract. These will go away within the next couple of weeks as his body gets stronger, but it is quite painful for him right now. Please pray that we can get through the next week or two with as little pain as possible.

God gave me a HUGE blessing today--Dylan was laughing and smiling in his sleep...it almost made me cry!! He is infamous for doing this, but has not done it for a LONG time!! I am so thankful for the little things....and smiles are my favorite!! Although this is a very trying time for our family, it is teaching us a lot. God has taught us how to lean on Him for EVERYTHING, and I cannot imagine going through one day of this without Him. I feel thankful for so many little things now. I appreciate the little things now, and I notice them. I look forward to the simple things. Life is not all about me....it is about HIM!

Thank you everyone for all of your prayers!! I hope to have wonderful news for you tomorrow!!

We Love you!

Michelle, Erik & Baby Dylan

DAY +10.....and counting

Good evening!

Dylan is now on oxygen. He has been on oxygen on and off since yesterday at 2pm. The overload of fluids is making it difficult for him to breathe. If you think of the way you feel after eating a HUGE Thanksgiving dinner or after drinking a lot of fluids and multiply that by 10--that is how he feels. We have to be very careful of how we pick him up and how we position him. He will probably have to be on oxygen the next couple of days. Sometimes he does really well on his own, but as soon as he falls asleep, his levels drop. Please pray that his breathing continues to get better and it does not get worse. If the fluid gets to be too much for his body, it could leak into his lungs, and then we would have a whole other problem on our hands. Soooooo, let's just pray that does NOT happen. Dylan weighed in at almost 17 pounds today!! And 3 of those pounds are fluids....CRAZY!! The Docs are doing all that they can to limit and decrease the fluids, but they are all medicines that he needs. He is still on morphine, but at a lower dose, and that seems to be working. He has not gotten any more side effects and the sores that are in his throat seem to be getting better. For now, he is just extremely uncomfortable in his little puffy body....but it will all be better soon.

Karyna got into town today, and we were able to show her our new pad. We are so thankful and grateful for here being here! We are also thankful to Jalayna and Gary (Erik's other sister and her hubby) for letting us steal their babysitter.

Well, we have a long night ahead of us so I'm gonna get going. I'll update more later.

Thank you again for praying for our little guy,
Love, Michelle

DAY +9

Hello Everyone!! We hope you had a GREAT weekend!! Erik and I had a WONDERFUL weekend away from hospital and were able to enjoy spending some much needed time together. I think marriage can be hard in normal circumstances, then add in a sick baby and months living apart from each other....it can be VERY stressful and difficult. We enjoyed a wonderful 4 course dinner at our favorite restaurant, The Melting Pot. If you have not been there, GO! It's well worth the money and very romantic and fun! We try to go at least once a year, but it is pricey, so we save it for special occasions...and this one fit the criteria! While we were away, Baby D was able to spend some quality time with my mom. We are sooooooo thankful to her for staying the weekend with him.

Now back to Dylan. Not too much has changed since Friday. He is still really swollen from the fluids. They have given him medicine to help him pee out some of the fluids. They are also trying to limit his fluids as much as possible, but he has a lot of medicines he needs, along with his TPN. He has also gotten a lot of transfusions since transplant. This is expected and completely normal, but the transfusions also add to the fluids. Since transplant on the 11th, he has gotten 2 blood transfusions and 5 platelet transfusions with another one tonight. WOW!! That is a lot of blood! (Thank you to all of you who donate blood on a regular basis!!) His throat continues to heal from the sores, but it's hard to tell since we cannot see them. He has been wanting his binky a lot more and seems to enjoy the sucking motion, so this tells us that his throat must be getting better. His tongue is less swollen, but he is still having trouble swallowing his saliva because it is so thick. This should be going away toward the end of this week when his counts start to come up. PLEASE, PLEASE, PLEASE, pray that his counts start to come up VERY SOON!! His body should be starting to reproduce cells around this time. They can see that his body is starting to reproduce, but only on a very small level, a level that the computer does not even detect. They may discontinue one of his antibiotics tomorrow if they do not see an increase. Sometimes the antibiotics can hinder the growth. The Doc is not worried about Dylan's progress as of yet and is hopeful that he will continue on track this week. Dylan's overall countenance is getting better also. He seems more happy and in less pain. He is still on a constant morphine drip, but it is at a very low dose. When we got back to the hospital today, Dylan woke up and gave Daddy and I some huge smiles!! We missed him so much this weekend and the smiles were a wonderful present!! We tend to take them for granted when he is feeling well because he smiles SO MUCH!! So during the bad times....every smile is CHERISHED!!

We have a big week ahead of us with a lot of recovering to do. Dylan has been such a trooper through this past week and a half, and we are really looking forward to having our happy baby back and for him to be feeling better. Please pray for a miraculously quick recovery!! With God, nothing is impossible!!

Walking by Faith,
Michelle, Erik & Baby Dylan

Day +5

We are at day +5!! I post the pictures, both sad and happy, to show you the reality that we are living in everyday. There are happy moments, and also very sad ones. I like to look back at the pictures and see how far God has brought us in this journey. We are now in a bad week.....a lot like his first week in the hospital. I was not sure how we were going to get through that first week. It was horrible and words cannot describe the pain that we experienced watching Dylan go through all of the tests, and pokes, and to face the truth about the cancer that was trying to take his life. BUT God had bigger plans....and he HAS bigger plans for our Dylan. We got through those weeks and the past few months leaning on God's strength, and we will get through this too!! D amazes me everyday with his strength and the love he has for everyone around him. We are excited to see what God has in store for him!!






These pictures show a few of the activities of Dylan's daily routine. Every day he gets a bath--and this is his favorite part!! Most of the time, he would be smiling up a storm, but for now, the smiling is saved for extra special times :) After bath, is dressing change time. This is NOT his favorite!! Because his dressing gets changed daily, they have a "second skin" bandage all around his lines so that the tape can stick to that, and not his skin. Even though they try as hard as they can to protect the area, it still gets irritated. After cleaning both lines, new bandages are put on, and the drama is over. He also gets mouth care every 4 hours. This is when they swab his mouth with a sponge with antiseptic on it to clean out his mouth to disinfect it as much as possible. He is not a big fan of mouth care time, but usually takes it like a man (or actually better than most men would! ha!). Those are usually the big events of the day....exciting huh! The rest of the day consists of relaxing, sleeping and cuddling....we like those parts!! So far, Dylan's side effects seem to be staying the same. He is really puffy (swollen) from all of the fluids he is getting--which you can probably see in the pictures. His little outfits that are usually loose, are a bit snug right now, but that will go away. He received another round of platelets tonight. That was his second round of platelets since friday, but it is not unusual to get a lot of platelets during the early stages of post transplant.

Erik's mom and aunt came to visit today! (also my mom and aunt, just easier to describe that way :) I was able to get another much needed nap!! OHHHHH how I am spoiled!! But they came just in time....because earlier that morning I was teetering on the brink of going delirious and looked like a walking zombie. Grandma wanted to save some of Dylan's hair so we could compare the color with whatever grows back--so the fourth picture is of Dylan's first haircut!! He did great! HA! I do not expect his hair to last through the weekend, but we will see! At least now we have a sample in a baggie :)

Friday is Erik's 29th birthday!! YAY!!! And for his birthday, HE has surprised me with a nice weekend at a resort in Tucson!! I told you I am spoiled!! The best part is that we will be only 8 miles away from Dylan....and not 3 hours away! I MAY be able to relax this time. My mommy is coming down for the weekend to spend some time with Dylan, and he is really looking forward to the one on one cuddle time!! We are so blessed to have our family close to us and to be so supportive!! WE LOVE YOU ALL!!

Please continue to pray that Dylan's pain will stay under control and that he can get through this week with as little pain as possible! Pray for strength for us who are taking care of him, because it is difficult to watch him suffer. Pray that he continues to avoid some of the worst side effects and that his body responds well to the new cells. Thank you for all of your love, support, and prayers!!

Love
Michelle

D is 5 months old today :)

Baby Dylan is 5 months old today!! Happy 5 months little guy!! This is not where we would ever think we would be at his 5 month mark.....BUT, he is HERE!! He is alive, against all odds, against the "statistics" and unknowns.......he is here and teaching all of us new things everyday!! He is persevering through the unknown...and why?...because he is in the hands of God....and God will never let go!!

HAPPY 5 Month Birthday Baby Dylan!! We love you soooooo much!!