Tuesday, June 30, 2009

I'm still smiling!





Even though I am STARVING, and grumpy, I still managed to get some smiles out for my family today!

Grin & Bear it

Today has been one of the roughest days since we have been in the hospital. My poor lil man is STARVING--or at least that is what his tummy is telling him. He has been on TPN which is feeding him through his IV but it does not make his tummy full. So he does not understand, and everytime I would pick him up, he would think I was going to feed him--and when I didn't, he became quite frustrated! They took another x-ray of his tummy today and it showed that his illeus has gone down, but it is still there. They are being very cautious and cancelled his chemo drugs today along with his intrafecal spinal tap. Those will be postponed until later this week. They do not normally postpone any of the chemo during the "induction" phase because it is so important to stay on schedule, but the doctors feel that it would be dangerous to do it while his little belly is still in trauma. So please pray that the illeus is gone by tomorrow morning when they do the next x-ray. That way they can slowly start to feed him again. They will start lightly with Pedialite and then slowly add in the breastmilk. Dylan has lost weight since we have been here so it is very important that his body gets back on track. He now weighs a little under 10 pounds. We want him to get fat and chubby!! :) He did not sleep a lot last night or today (neither have I) because he is so uncomfortable, so we are hoping he will get a good nights sleep tonight. Grandma Praskins is here tonight to relieve me so I can go home and get some much needed sleep--thank you grandma! That is all for now! We will continue to update you when we find out more information.
In His Grip, Michelle

Monday, June 29, 2009

Smiles





I was smiling a lot today! I even let my mommy catch a few on camera!! My wonderful blankie is from my grandma's friend Terri, and I love it!!

Upset Tummy

Dylan still has a blockage in his intestines. The illeus has gone down a little but it is still there. The doctors are hopeful that it will go away on its own with just letting the tummy rest. They said that if he eats anything, it could cause an infection and get into his blood stream. So still no food for baby Dylan. Tonight they are going to put him on TPN, which is basically specialized nutrition that goes in his IV. This will be the only "food" he will receive until the blockage is clear. This specialized nutrition will be enough for him to get all of the nutrients and fats he needs. Thankfully Dylan has had a good dispostion through all of this. He is sleeping really well and when he is awake, he is content with the sucrose "sugar drops" and his binky. Plus he is still flashing those adorable smiles! I even caught one on camera--Great Grandma got the biggest one out of him. He was supposed to get another spinal tap tomorrow, but because of his frail condition, they are going to put it off until next week. The oncology doctor said that his body is responding well to the chemo so far because his white blood cells decreased quickly--so that is a PRAISE. We will most likely meet with the bone marrow transplant specialist sometime next week to discuss our options and the pros and cons of the procedure. The docs are still not positive that it is the route we are going to take. They said that if we do the transplant, they will first look for bone marrow matches in banked cord blood (cord blood that has been donated), and then if there are not any matches there, then they will look for matches on the national bone marrow donor list. So that is the plan for now. He did not have any fevers last night--so praise God! He had a small one today, but after we unwrapped him, it went away. So specific things to pray for now are that God continues to keep his fevers away and that his illeus goes away completely so he can resume eating. That is all of the news for now, thank you again for your prayers for our precious son. :)

Sunday, June 28, 2009

Taking it one day at a time




Daddy prayed with me tonight, and I got a lot of rest laying in mommy's lap, but my tummy still hurts. The doctors still dont want me eating anything until tomorrow. I hope my tummy heals soon because I am STARVING!! And this sugar water stuff does not do the trick anymore :) Thank you for praying for me!!

Blockage

Baby Dylan needs your prayers! He has vomitted a lot of gross bright green, 'mucousy' stuff (bile). He has had a a few x-rays of his stomach and intestines; the x-ray shows an ileus (small blockage in intestines). The doctors stopped Dylan's feedings yesterday at 3pm. This morning the doctors told us that they are not going to allow him to feed today either. They are trying to give his intestines some 'rest' to allow the inflammation to go down. Please pray that God will heal his intestines so he can resume his feedings, that he won't throw up, and that he won't be too grumpy today. Dylan is also getting a platelet transfusion and more antibiotics. To get through this time, Dylan is spending as much time on mommy's lap as possible:)

Saturday, June 27, 2009

Gonna be a Long Night


Dylan has thrown up 3 times today. They did a X-ray of his stomach and intestines and they have found that he has an 'Ileus'. It is a small blockage in his intestines that doesn't allow food to pass through. The doctor has ordered that Dylan's feeds stop until tomorrow morning. Then they will re-evaluate him. Not good news.... Gonna be a long night. Just like any baby, Dylan loves to eat and gets very upset when he can't because he does not understand why his tummy is not full. Please pray that God will heal his intestines quickly and that he can start his feedings asap!

Thank You!

A special Thank you to Courtney Anderson and Rachel Smyers for hosting a Silpada Jewelry benefit party last night for Dylan. We appreciate all of their work and effort they used to put the party together. The ordering will not close out until July 13th, so if you missed it or know others who may be interested, please contact Rachel at silverfrosting@yahoo.com.

Victories and Trials

We are thankful for the little progress that baby Dylan is making every day. Yesterday he surprised the nurses by drinking 3 ounces out of the bottle, and wow he was hungry! He has also been able to continue to breathe on his own without the assistance of oxygen. My sister Karyna was able to spend the night at the hospital and care for Dylan. A big trial has come up in the form of a fever at approximately 101 degrees. Dylan was uncomfortable during the entire night. The nurse had to take a blood culture to see if there is an infection. We are waiting for the results and pray that Dylan will not have an infection. We are praying that the tylenol will bring down his temperature and that antibiotics will fight off the infection, should there be one. Please pray for healing and that his body will not reject the antibiotics.
Thanks
Erik

Friday, June 26, 2009

Smiles

Great day yesterday!! Dylan is liking his bottles again and even swallowing his spit--I know--sounds strange to get excited about the spit, but its a great improvement! So for now, he will continue to get his bottle instead of getting fed out of the feeding tube. He still has the feeding tube for his medications and just in case he needs it for food--so it will continue to be our friend! He is completely off of his oxygen which is AWESOME, and his levels have remained stable. He is now smiling a lot more which is so encouraging. It's so sad when he doesnt smile all day and only gives you his little frowns. The smiles make all of this worth it!

Thursday, June 25, 2009

Thankful for Smiles

We are thankful for answered prayer. Dylan is looking more and more like his true happy self. Most of his swelling has gone down and he actually smiled at us a few times. What a blessing!

Dylans prayer bracelets are in!!



Hey guys! We ordered some prayer bracelets for Dylan! They are orange and say "Baby Dylan-Leukemia PrayforDylan.com" They are a great reminder to pray! If you want a bracelet, we will have them at our churches on Sunday: Northwest Community Church and West Valley Bible church. If you do not attend either of those churches or live out of state, we would love to send you one! Just send a self-addressed stamped envelope to:
Erik Praskins
PMB #226
15411 W Waddell Rd Ste 102
Surprise, AZ 85379

Two bracelets should fit in a regular envelope just fine, but with two stamps. One bracelet would be good with one stamp :)

Thank you everyone for your support!

Dylan has been moved!

We are now out of the PICU (Pediatric Intensive Care Unit)! We are sad to leave all of the great docs and nurses there, but are happy to be in the regular pediactric unit. We gathered up ALL of our stuff last night and traveled to our new room. It is a little bigger and we still have a bathroom with a shower--PLUS we now have a mini fridge!! So cool! Its amazing how much stuff you accumulate over 2 weeks at the hospital. The nurses in the PICU were teasing us that we would have to rent a UHAUL to get it all transferred over!! But now we are settled into the new room that will be our home for a while. Grandma Praskins gave us a little break overnight by staying with Dylan and Erik and I got a great night sleep in our own bed. Don't get me wrong, the two inch matresses at the hospital are AWESOME, but its always nice to sleep in our own bed! Please pray that God will keep Dylan healthy enough to stay in Pediatrics and not have to go back to PICU. The Doctor said that as long as Dylan does well in his next round of Chemo in 2 weeks we may be able to take him home!! That would be soooooooooooooooo awesome as well as scary. But I know they will not send us home if he is not ready. So we will see! One day at a time!

Wednesday, June 24, 2009

A New Day

So far this morning there is no drama! Praise God!! His temperature has remained stable, and he is breathing on his own!! Well, almost. They weaned him off of most of his oxygen during the night and now he is on the lowest setting. He will probably be off completely sometime today. We keep teasing the nurses that he wants to be on the oxygen because he does not want to be moved out of the PICU and have to leave them! He had his chemo yesterday and now his lil body has 2 weeks before getting it again. Now he can relax and recover. Its been a while since his last transfusion, but he is getting some blood this morning. According to the doctors these next 2 weeks are a very critical time for Dylan. His immune system is at the lowest possible point and he is at high risk for infection. Please pray that the little amount of white blood cells he has left are able to fight off any "bad guys" that try to attack his body. He is currently on one antibiotic and they are watching his cultures closely to see if an infection grows. Dylans eyes are looking a lot better, they only have a faint pink shadow around them now instead of the dark purple bruises. He is back down to his normal size and is looking really good. Its hard becuase he looks so adorable and healthy on the outside, but we know he is fighting a huge battle on the inside. He still has a hoarse voice and his cry is almost muted (which is sometimes nice because there is not loud screaming but the muted cry sounds so helpless and pathetic and sad). He is still getting all food and oral meds through his feeding tube, but PRAISE God they are still giving him breastmilk!! He has not wanted to suck on his binky the past few days which shows how much his little mouth is hurting, but something changed yesterday. We are using a little sucker thing (that is the technical name!) to suck out his excess spit that he does not swallow, and yesterday he started to suck on it and almost enjoy the whole process! It was so cute, he would open his mouth and lick the "sucker thing". So we tried the binky again and he is now loving it!
His sore throat is a side effect of chemo, but he has not gotten any sores in his mouth as of yet which is awesome. His lil bum continues to be clear of sores and rashes, and that is a definite answer to prayer! Continue to pray that he does not have many side effects from the chemo.
Thats all for now .............we will update you when anything new comes up.............until then................keep praying!


Baby Dylan's Mommy & Daddy

Roller Coaster Ride

I had one friend describe her stay in the hospital with her daughter as "A Roller Coaster Ride", and I would have to agree that is the only way to describe it! From day one we have had so many ups and downs. One day he looks good and is getting a good report and then the next minute he is not breathing, or he gets a fever, or his levels are dangerously low. It can truly drive a parent crazy! Two days ago when he spiked his fever in the middle of the night, Erik woke me up to tell me about it and I pretty much shut down. I freaked out just a little, and that whole day I felt like I was on the verge of a nervous breakdown. I would'nt really talk to Erik and all I wanted to do was cry and sleep. I did not think I could handle any more. AND I COULD NOT! That day, the very moment that Erik told me the news, I should have gone straight to the One who is in control. Instead I started down the path of no return, worrying about every possible scenario and believing the worst was going to happen. Thankfully God pulled me out of my craziness and brought me back to Him. That day cannot repeat itself. I do not think that I can handle it nor should I. There is no reason I should ever feel alone in all of this. Trusting God is soooooo much easier than the alternative. We are taking this trial that God has allowed us to endure one day at a time. We cannot dwell on the future because we have no idea what the future holds. We can only know what is happening right at this moment and trust that the Almighty God of the Universe has a plan in all of this. For some reason He chose us to go through this and He will bring us through. We have received countless emails of encouragement and prayer and we are so thankful for our amazing support group! Everyday there is someone new on the blog or facebook that heard about our precious baby Dylan from someone else, and although they do not know us, they are praying for our family! What an awesome testimony of how great our God is! Dylan's story is reaching families across the world and countless people are down on thier knees praying for our little boy! Thank you so much for all of your prayers and encouragement! I have had people tell me that they can not wait to wake up and see new updates on baby Dylan and to read about his journey! Some even text or email me to find out why we have not put anything up yet! That is awesome! I too wake up excited to read new encouraging emails and comments, and God is truly using everyone to help us through this. Erik and I are excited to see how God works through this horrible situation to accomplish His perfect plan. We know He has a purpose. Whether we see that purpose today, next year, or never, we know He is in control! We are truly amazed by the support of everyone! Thank you for the continued prayers and we know we are not alone in this journey!
Love Michelle

Tuesday, June 23, 2009

Update

The nurses have been 'weaning' Dylan off of the oxygen slowly throughout the day. He will back to breathing without any assistance in the morning. He had a rough day but we are thankful for answered prayer. One day at a time!

Dylan Needs to Breathe!

Dylan's spinal tap chemo treatment went well, but he has had 5 scary episodes afterwards of "forgetting how to breathe". His face turned super red and purple and his heart rate went high. The nurses had to give him forced oxygen to get him to breathe. His lungs are pretty clear but he may have had a reaction to some medication from the spinal tap chemo treatment. Please pray that God will allow him to breathe on his own and with ease.

Getting Ready for Chemo

Here is Meredith (Mema) and Lee (Pop-pops) with baby Dylan before his Chemo treatment. Please pray that the treatment will go well and that Dylan's little body can handle the side effects of the drugs.

Monday, June 22, 2009

Baby Dylan has Fever

Please pray for reduced body temperature for Dylan. At 100.5 degrees is the temperature at which the nurses start giving him antibiotics and take blood cultures for followup. It is currently at 100.6 degrees and climbing. Since Dylan has hardly any white blood cells left, it is very difficult for his body to fight sickness and infection. His heart rate has reach the mid 190s tonight and the nurses are giving him medicine to try to calm his heart. He is very uncomfortable! Please pray that God will give wisdom to the nurses and doctors and that HE will heal his body of any infection or sickness.

Sunday, June 21, 2009

Grandpa Tim and Dylan

video


Grandpa Tim, the Comedian.

Erik's 1st Father's Day

video

Erik 'buzzed' his head last night. He wanted to show his love for Dylan.
No more 'poofy' hair in the mornings. Yeah!

Encouragement

This was written to me from my best friend's mother. She has a way with words that amazes me and I wanted to share it with all of you who are along with us in this journey. Thank you again to all who are praying. We love you!


Thank you, Sweetie, for walking thru this impossible time with such grace & faith, with your eyes fixed on the One Who sees. He loves you more than you can possibly imagine, and He appointed you to be Dylan's Mommy for such a time as this. And everyone who comes near to know Dylan's story will hear the truth, because Jesus has given your courageous heart the desire to carry His Message to us.
It is NOT FAIR that this happened, but you know that He allows unthinkable events in our lives to accomplish His perfect purpose - because you & Eric are being taken to the next level of maturity (Ready or not!); because He will use this to benefit others in infinite ways that He, in His perfect sovereignty, gets to decide; to make us grateful; to reorder our priorities; to prompt us to encourage and affirm each other; to empty us out; and because the countless intercessory prayers of the saints as we bear you to the Throne are making a lovely fragrance in Heaven.
I remember how you GLOWED when you were preggers (when I smiled at your pic of the preg test, Em said you were so stinkin' excited when you found out.) God smiled, too, because He knew He was about to take you thru your greatest adventure - free-falling, without radar or even a clue, knowing only that you are cupped in His hands. That's all you need to know.
Love & Hugs,
Nancy Chamberlain

It Is Well

When peace like a river
Attendeth my way
When sorrows like sea billows roll
Whatever my lot
Thou hast taught me to say
It is well
It is well with my soul
Though Satan should buffet
Tho' trials should come
Let this blest assurance control
That Christ has regarded my helpless estate
And hath shed His own blood for my soul

It is well
With my soul
It is well
It is well
With my soul

My sin
O the bliss of this glorious thought
My sin not in part
But the whole
Is nailed to the cross and I bear it no more
Praise the Lord,
Praise the Lord, O my soul!

And, Lord,
Haste the day when the faith shall be sight
The clouds be rolled back as a scroll
The trump shall re-sound
And the Lord shall descend
Even so, it is well with my soul

Divine Appointment

God never ceases to amaze me! We went out to dinner tonight hoping to not see anyone we knew to try to get through one night without crying,but God had a different plan. We show up to Cheesecake Factory and we walk out to the patio seating and there sits Erik's sister Arianna and her husband Billy and his entire family! At the table next to them is our pastor Skip Ast and his wife Laurie. Coincidence? I think not! God has a funny way of doing things sometimes and although we thought we didnt need to see anyone, He knew we needed the hugs and encouragement. God works in our lives everyday! We just need to notice those things and give God the glory!

Saturday, June 20, 2009

INVITE: Baby Dylan Benefit Party

Benefit Party for Dylan Praskins"Girls Night Out" Open-House Silpada Jewelry PartyALL PROCEEDS GO TO DYLAN!!! When: Friday, Jun 26th from 7-9pmWhere: Courtney Anderson's home in Surprise, AZContact Courtney at azandersons@yahoo.com to receive details and directions.

Its a Train...No....Its Erik and Dylan

Michelle Henderson-Praskins Erik and Dylan had a snoring contest last night- daddy definitely won but baby put in a good fight! I love my boys!

Friday, June 19, 2009

Dylan Loves Visitors!

video

Dylan loves his Morphine!

video

Feeding Tube -

they put in a feeding tube this morning--he hasn't eaten in the last 16 hours. this will also help him with the much hated oral meds and will allow him to sleep.



















Thursday, June 18, 2009

.chemo!

prayfordylan.com has had over 1000 hits! thank you for your support and prayers. I can't wait to tell him someday how many people were prayin for him!!!


chemo chemo and more chemo. then drugs to counteract the effects of the chemo. right now pray for his lil bum-there are a lot of toxins coming out and ....

...then can burn his skin. pray for the lining in his mouth that he doesn't get sores and that he can continue to drink breastmilk--the chemo can make the....

...milk taste metallic and some babies refuse to eat--and then they have to put in a feeding tube. pray that his lil body can take all of this :(

Wednesday, June 17, 2009

Best Chance!

doc says that dylan will have the best chance with a bone marrow transplant-start praying now that there is a perfect match out there for him-details to come

if you want to get on the national bone marrow donor list to possible save someones life like dylan-you can get tested at phx childrens hospital on thursday....

the clinc is open 8-4 on thursday and 7-3 on friday. it is free and takes about 15 minutes :)




Financial Help

An account has been setup on behalf of Dylan at Wells Fargo. Donations can be made at any Wells Fargo Branch, just mention the "Dylan Praskins Donation Fund-Account #2604 508 198"

Tuesday, June 16, 2009

Baby Dylan Video 6/16/09

Here is Baby Dylan video.
video

Tuesday Night Summary

Chemo was performed today. Dylan's white blood count has been reduced to normal levels (between 5000 and 10000) which is an improvement from the 425,000 when he arrived a couple days ago!!!

Please pray that his white blood cell count remains in the normal range as further decrease opens the possibility of sickness and infection. Chemotherapy drugs are designed to reduce white blood cell count, so the concern is in regard to reducing the count below normal levels, thereby increasing risk of potential sickness etc.

This is typically a 48 week process, with the first 21 days of chemo being the most aggressive. Dylan will be in the hospital for a minimum of 60 days, and will be re-evaluated at that point.

He currently has a broviac which is a central tube that enables doctors and nurses to perform blood testing and administer all the medication while not having to continuously poke him for IV's all the time - this is much more efficient.

His platelets are low(platelets cause the blood to clot), so there will be a transfusion of platelets in the near future. His swelling has decreased significantly which is more good news. Erik says he is much more comfortable today than the past few.

The doctor has mentioned that the best blood for Dylan will come from the blood banks. Erik and Michelle want to say thank you to the many people who have volunteered their blood for Dylan, but at this point he will receive blood from the blood bank since it is already tested. They are also thankful for everyone's support through prayer and encouraging words.

Michelle Says "

Michelle Henderson-Praskins You never know who's life you may be saving!! thank you to everyone for your willingness to want to donate to our baby ;)

Bone Marrow Match?

phx childrens hospital is doing testing this thursday from 10am-12 or you can get a kit in the mail http://www.marrow.org/JOIN/index.html

the testing is a cheek swab only...then if you get matched, they do a blood test to confirm that you are the best match, but the whole process would take at least 6-8 weeks before you would have to make the decision on whethter to actually give marrow

Tuesday

Little Dylan is going through the first round of full chemo today. Pray that this treatment would get rid of the bad cells being produced, resulting in a lower white blood cell count. Please also pray for Erik and Michelle, that the peace that can be found in Christ's loving arms will continuously comfort them as they trust in Him.

Monday, June 15, 2009

Smile : )

dylan woke up long enough to give mommy a huge smile-something I haven't seen in a few days. he loves his mommy :) he made my day!

Family Pictures











PrayForDylan.com is up!
























The internet is a powerful tool. We are working on a website called www.prayfordylan.com and it will contain a blog which will be updated frequently with Dylan’s condition and progress.

He also has liver failure and his bone marrow is completely filled with leukemia. Dylan will be in the hospital for a minimum of 2 months. We trust completely in God’s sovereign plan and know that there is a greater purpose through all of this. We are thankful for the tremendous outpouring of love and support from family, friends, and even people we have never even met...

Baby Dylan has infant ALL (acute lymphocytic leukemia). It is a very rare and aggressive cancer of the blood. The oncologists are starting full aggressive chemo therapy tonight. It is a 48 week process and could last longer depending on how well things progress. There are many potential side effects, but doing nothing is not an option....