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

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. :)

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:)

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

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!

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!

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