Wednesday, December 30, 2009
Day +110.....movin and a'groovin
Hey guys!! MERRY CHRISTMAS and HAPPY NEW YEAR!! So sorry that I have not updated anything in a while. Just know that NO NEWS, is GOOD NEWS!!! We had an amazing Christmas (and I am now 29!! YIKES)....and our best gift of all was our baby boy!! I was watching a sappy Christmas movie, and just looked at Dylan and started bawling. The poor boy could probably hardly breathe because I was hugging him so tightly. He is such a HUGE blessing and I cannot express how happy we are to have him here. During this past week, we have been able to spend a lot of time with family on both sides, and even made it up to Flagstaff for a few days, where we celebrated Christmas with my immediate family at my sister's house. There was A LOT of snow, and it was FREEEEEEEZING....so we opted to enjoy the snow from the inside of the house!! It was beautiful to look at!! Our dog, Lily, came with us, and she LOVES the snow!! She was in heaven running around my sisters huge backyard full of snow!! She is a crazy dog!! We also were able to enjoy watching some silly squirrels fight over walnuts that my sister was feeding them. Who needs a TV when there is wildlife entertaining you?? During the summer, she also has chipmunks that join in on the fun! So cute!!
Dylan is doing really well! We went down to Tucson for clinic yesterday and all of his levels are great!! We are now down to one day a week for clinic visits, so we are very happy about that! Most of D's meds are oral now....and now, his tummy does not want to cooperate. For the past week, he has been throwing up his meds, almost immediately, and his tummy does not like it! We are trying to move around some meds and also give him a few more IV injections of Reglan that are supposed to help him empty his tummy. The Doc says that most babies have some sort of reflux....and babies that have been through chemo like D, have a VERY bad problem with reflux. This could be an issue for a few years until his tummy heals completely and matures more. Please pray that he can keep down his meds and that it does not hurt his little tummy anymore. Other than the throw-up issue....he is doing PHENOMENAL!!! He is SOOOOOOO happy! I have never seen a baby who smiles this much!! (besides his girlfriend Abby!) He is enjoying life and loves any attention that he can get!! He is now sitting on his own!! Well.....almost there!! He can balance by himself for about 5 minutes, and then he becomes a leaning tower of Dylan. He is trying though!! It is so much fun!! We also think he may be getting some teeth!! He takes his hand out of his mouth long enough to eat, and then it is right back where he likes it!! We think that he may have 2 bottom teeth making their way through....so we will see! He is STILL not sleeping very well at night....so fun for me! Ha!! But he still only eats 2 ounces at a time, so he wakes up often. The goal for next week is to get him out of the pack'n'play in our room, and get him into his crib. This is a hard step for me, because I have not been further than 6 feet away from him at night for 6 months, but it WILL be good for the both of us. Please keep us in prayer as it will be a tough transition. Pray that he starts to eat more and less frequently and that he will continue gaining weight. He has not gained a lot of weight since leaving the hospital, but it is not an issue at this point. He is now around 14 1/2 pounds and about 25 inches. He is a little guy! And he has the cutest tiny feet!! Almost the size of newborns!! I love to nibble on them! ha!! His site where his double line is all healed up and he now has a small scar. His single line is holding up well and will hopefully be out soon!! That will be SOOOOOOO nice!!
I think that is all that is new for now. I hope that someday, Dylan gets to meet everyone that has been praying for him and supporting him....you guys are AMAZING!! We love you and hope that 2010 brings you many blessings from the Lord.......we are going to have a FANTASTIC and PURPOSEFUL 2010!!
Walking by Faith,
The Praskins
Tuesday, December 15, 2009
Day +95....One broviac down and Leukemia FREE!!
Praise God from whom all blessings flow!!
Today is a GREAT day!! The surgery went well and Dylan is a super trooper!! He did surprisingly well with not eating after 1am--he just wanted to hang out at 4am-so we have had a loooonnnngggg day. Dylan's double line was removed without any issues. He will have a little scar as a reminder of this crazy journey we have been on, and every time I see it, I will be reminded of God's miracles!! Even though I'm reminded of that every time I look at D!! He still has his single line and we will be taking that out in a month or so, depending on when we can go to all oral meds. His spinal tap results showed HEALTHY spinal fluid and his preliminary Bone Marrow results showed HEALTHY Bone Marrow--LEUKEMIA FREE!! We are so excited and relieved to get the good results!
It is a constant struggle to trust the Lord and not worry about his Leukemia coming back. He can still relapse at any time. Today I was reminded, yet again, that I CANNOT control any of this and I AM NOT in control of anything (even though I try!). God has been so good to us and has given Dylan a second chance at life! We will NEVER take that for granted!! None of us know how long we are going to live or are promised any amount of time here on earth-so I will CHERISH every second!! Even when D has me up all night, I will cherish the time I have with him. Dylan is doing phenomenal!! He continues to have great counts, all of his levels are good, and he is growing and thriving! What a blessing he is to us!! I still can't believe that it has been 6 months since he got diagnosed! Some days it felt like an eternity, but now, in the grand scheme of things, it was only a short time. During all of the hospital days, I had so many people tell me, 'This too shall pass'. And when they would say that, it would almost make me mad....because it felt like it would NEVER pass!! But guess what? It did!! The horrible days of crying all night and watching Dylan suffer are over!! Even as I write this I think, 'Well what if it comes back, what if the nightmare isn't over?' I know that IF the unimaginable were to happen, then God will still be here. He will carry us through as he has this whole time. He will never leave us or forsake us, and we can rest in that truth. Thank you for your prayers, your encouragement, and your support--we cannot thank you enough!!
***Reminder*** Hopekids will be hosting the Scottsdale Fantasy of Lights and a portion of the proceeds goes to support over 600 Hopekids, with Dylan being one of them! This is an amazing Christian organization that allows families to go to events that they would normally not be able to attend. The group is so supportive and wants each kid to live as normally as possible and they help us as parents stay sane in our otherwise crazy worlds!! You can go to Hopekids.org to find out more about this amazing organization!! Please join us on Dec 23rd or 30th at the Fantasy of Lights!! If you can't make it there one of those nights, please go and support the other kids that will be there. We still need some back-up volunteers for both nights, so if you are available, please let me know!
Love,
The Praskins
Sunday, December 13, 2009
Day +93......Still Going Strong!!
Hello everyone!! I cannot even begin to tell you how much fun we are having with Baby D!! HE IS SOOOOO MUCH FUN NOW!! He has begun to enjoy toys! He has never really cared for any toys before, but now, he wants to grab at everything....and once he gets a hold of it, the toy is in the mouth! He is sitting up really well in his bumbo and is building his core more and more everyday. We opened his little einsteins jumper, and he is loving it! He is still having a hard time sitting straight by himself, but loves all of the things to look at, and loves to bounce up and down on his feet. His little legs are getting stronger with each bounce! He is full of energy and is feeling really strong! We are beyond thankful and blessed with how he is doing.
We are off to Tucson tomorrow for two days. We will be having our normal appointment on Monday, and will be spending the night at The Ronald McDonald House on Monday night. Tuesday, Dylan is going to be getting one of his lines taken out!! YAYAYAY!!! The docs have decided that we no longer need all three lines, so we are going to be taking one out!! The plan for now is to take out the double line and leave the original single line in. While he is under anesthesia, they are also going to do a spinal tap to check his spinal fluid and also a bone marrow aspiration to check his bone marrow. They expect to find both his spinal fluid and bone marrow to be healthy, but there is always a chance of the leukemia to be in there. As you can probably imagine, this is very scary and we are praying like crazy that the results come out positive. Please, PLEASE, PLEASE, pray that the results are normal and healthy!! Please pray that he does well going under anesthesia, and that there are no unexpected surprises when they take out his line. Pray that he is not in too much pain after the procedure and that his line site will heal quickly.
We are just one step closer to being line-free and we are excited!! In a few more weeks, when he is completely off of his IV meds and they are all switched to oral, we will be taking out the last line. He then, will get a port-a-cath which is a central line placed under his skin. This will allow the doctors to draw blood on a weekly/monthly basis, without having to poke him everytime to put in an IV. I am really looking forward to the day where we do not have to worry about him yanking on his lines and pulling them out (I have had nightmares about it!!), and that he will be able to take normal baths and be a "normal", healthy, 8 month old!! Can you believe that he is almost 8 months old??!! It's crazy!! He is still the size of a 4 month old, but he will catch up quickly!! Anytime anyone asks how old he is, and I tell them, they are always confused because he is so small and does not move like an 8 month old. So instead of explaining his situation everytime, I might just start saying that he is 4 months old!! HA!! That would be easier :)
Thank you for all of your continued prayers!! You guys are AWESOME!! I hope you all have a wonderful week!! It's beginning to look A LOT like Christmas at our house.....and we are loving it!!
We love you all!!
Trusting God in everything,
Michelle
Thursday, December 10, 2009
Scottsdale Festival of Lights 12/23 & 12/30
Hello everyone!! Dylan and his friend Owen are going to be the Hopekids guests of honor at the Scottsdale Fantasy of Lights on December 23rd and 30th. Please come out and join in the fun and enjoy a beautiful display of lights. The cost is $15 per car, and for an extra $3, you can also get 3D glasses for everyone in the car (so bring the minivans!!) It is a great way to get out with the family and enjoy the Christmas lights display! For more information, go to--http://www.azfamily.com/good-morning-arizona/Holiday-Lights-Scottsdale-Fantasy-of-Lights-78863507.html
We also need 5 more volunteers for the night of the 30th to help direct traffic and greet people as they are coming in. If you are available that night and are interested in helping out for charity, please email Carrie Gauntt at wgauntt@cox.net and she can give you some more information. WE APPRECIATE ANYONE WHO CAN COME OUT AND HELP!!
Also, Owen's artwork was chosen by Phoenix Children's Hospital for their annual Christmas Cards!! There were only 7 chosen out of hundreds, so we are very proud of him!! Please go to pchkidsart.com to order cards. Every dollar goes back to Phx Childrens to help the kids!!
Merry Christmas to everyone and we hope to see you at the Fantasy of Lights !!
We also need 5 more volunteers for the night of the 30th to help direct traffic and greet people as they are coming in. If you are available that night and are interested in helping out for charity, please email Carrie Gauntt at wgauntt@cox.net and she can give you some more information. WE APPRECIATE ANYONE WHO CAN COME OUT AND HELP!!
Also, Owen's artwork was chosen by Phoenix Children's Hospital for their annual Christmas Cards!! There were only 7 chosen out of hundreds, so we are very proud of him!! Please go to pchkidsart.com to order cards. Every dollar goes back to Phx Childrens to help the kids!!
Merry Christmas to everyone and we hope to see you at the Fantasy of Lights !!
Sunday, December 6, 2009
Day +86......We are HOME!!!
Wow....after 6 months of living out of a suitcase, in and out of hospitals (mostly in)......WE ARE HOME!!! Of course, I am still living out of a suitcase....because I have not had time to unpack yet....but soon that will be fixed! We have thoroughly enjoyed these past few days at home and are looking forward to many more. We are now on a twice a week schedule for clinic visits. Unfortunately, the first one is tomorrow....so we will be on the road at 7am, heading for Tucson. The next clinic day will be Thursday, so we will have a couple of days off in between. We are going to try to have a family member or friend go with me every trip....just to help with the munchkin, and keep me company on the 5 hours of total driving.
We arrived home on Friday afternoon to a house decorated with balloons and bows welcoming home Dylan, along with our friendly neighbor Carrie and her kids! It was a nice home-coming and we hope it is our last!! Dylan is doing really well and is enjoying the "new house" and all of the fun, new things to stare at! Lily, our dog, is not so happy that D is back....but she will get used to it....she just gets a little jealous when Erik is holding D, and not cuddling with her--she is a little spoiled!! But she is a great dog and will soon get re-used to Dylan :)
Well, I better get to bed because I have a fun day ahead of me tomorrow!! I will be posting some info on some Christmas festivities....so stay tuned!!
Loving life and thankful for every moment,
The Praskins
Thursday, December 3, 2009
Day +83......We are moving home!!
Hello Everyone!! MERRY MERRY MERRY CHRISTMAS!! The Praskins Family is officially moving home!! YAYAYAYAYAYAYAYAYAY!! We got the go-ahead from the Doctor yesterday and will officially be down to two visits a week starting next week!! We are going to move home tomorrow after clinic!! We could not be any more excited or thankful for the opportunity to move back home after almost 6 months! There is nothing that beats the comfort of your own home! WOOOO HOOOOO!!!
Dylan is doing wonderful!! He is happy, smiley, and feeling good! He still has some issues with his blood pressure. Please pray that the medicines are able to control his blood pressure and that it does not get worse or cause any problems. His platelet counts are jumping by leaps and bounds and are at the high end of the "normal" range. His blood counts are steady and healthy, and his white count is stable. He still has a very weak immune system and we have to be really careful with him. If we go out in public, we have to go at times where it's the least crowded. Most of the time, we try to keep him in his car seat with a blanket covering him, but he does not like that too much. He wants to be out and staring at everything around him. He loves to look around and watch people. He will just stare at you, with his big blue eyes, and look at you like he is trying to figure you out. Then, the huge smile comes. I love his smiles! He is a smile machine. And not just a smirk, but a wide mouthed smile!! Oh, it is so amazing and fun!! He is also getting stronger everyday. He loves to kick and move around. He is now scooting himself around on the couch, the bed, and anywhere that his little legs can get traction!! He is holding himself up much better now too. He loves to sit up straight-with help, and just look around at everything. He LOVES to stand up on my lap. He thinks he is so cool when he is standing on his skinny little legs! He loves to make noises, and talk, and laugh.....most of the time he sounds like a little
Ewok! Ha!! So cute!! He is even growing some hair!! He has little fuzz all over his head!! At this point it looks dark blond....but we will see!! I cannot wait to see what each day brings!!
Ewok! Ha!! So cute!! He is even growing some hair!! He has little fuzz all over his head!! At this point it looks dark blond....but we will see!! I cannot wait to see what each day brings!!
On the flip side of everything going well with Dylan, there are a lot of families going through some tough stuff. One family just found out that there little 3 year old has relapsed. The cancer is back, and it is more aggressive than ever. He is not expected to recover. Please pray for Colton and his family. He has 5 brothers and sisters. They are all headed to Disneyland today from the Make A Wish Foundation, to spend some much needed quality time! Pray for a miracle for little Colton....we all know God has no boundaries!! I know that God has us here for a reason, but it is so difficult to understand why God allows these things. Please pray for them. If you would like to follow their journey, please go to caringbridge.org/visit/coltoncowell
We know that God is healing Dylan and believe that he will be a healthy young boy in a year. When Dylan first got diagnosed, the first things I wanted to hear were stories of survivors. I wanted them to tell me that babies could survive Leukemia, and that he had a fighting chance. But the survivor stories were few, and the odds were stacked against us. Well Dylan is now a hero. A hero and a light of hope to other families who get their worlds turned upside down. I know that God has a plan for Dylan. Every time I stare into his big blue eyes, I am reminded of the miracle that God is doing in and through him. He has been an encouragement to so many people. We have received countless stories of how God has used Dylan to bring them closer to Him. How amazing!! Thank you Lord for using our precious Dylan to reach out to others!!
One of Dylan's little girlfriends is getting her bone marrow transplant tomorrow, on Friday. Her name is Abby....and she is a DOLL!! She is 10 months old and has the same type of Leukemia as Dylan. Please pray for her and her family, as this is the hardest part of the whole process. It is scary and exciting at the same time. Please pray for minimal side effects and a full recovery!! Pray that those stem cells go in and make their home quickly and that baby Abby will grow stronger everyday!! Here is her website if you would like to follow her journey caringbridge.org/visit/abbymullen
I will post some other kiddo's stories later....there are many!! I have a little munchkin fighting for my attention, so i better go for now :) Thank you all for all of your love and support!!
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