Sunday, August 29, 2010

Eye surgery is over! least for now

Hello everyone! Dylan had his second eye surgery on the 18th, this time on his left eye. When the Doc checked his pressure on his right eye (the one that already had the surgery), the pressure was 15! PRAISE GOD! It worked!! We are hoping to have the same results with his left eye. This is such a huge leap forward. Now that the pressure is under control, it is no longer damaging his optic nerve. Time will tell how damaged it actually is. Sometimes, relieving the pressure can actually reverse some of the damage. This is our prayer! Dylan is also really nearsighted as I have said before. We were able to get some glasses for him, but he is not a big fan of them and pulls them off the second I put them on. This will be something to work on. He can basically see clearly about 6-8 inches in front of his face. Everything else is blurry. He has gotten used to seeing like this, so it will be a big transition to see EVERYTHING clearly. Please pray for patience for me as I try to get him to wear his glasses, and that he sees how amazing the world is through the lenses. We also went to see Dr. Graham that same week. Again, Dylan received amazing lab results and praises from Dr. G. The whole time we were in his office, Dylan was crawling around and climbing on things and doing his new favorite thing.....break dancing! He loves to lay on tile or wood floors and spin around in circles with his feet in the air. It is quite hilarious. He will spin and spin until he gets dizzy--he loves it!

We now have 3 different therapies that Dylan receives every week. We have had a developmental specialist and physical therapist for the past 6 months, and I love them both! Now we have added a speech therapist. We have been having issues with feedings. Dylan cannot move his tongue back and forth in his mouth. This is an issue because he cannot control where the food goes and ends up gagging on it instead of mushing it with his teeth and gums. He LOVES to eat. So for now, he eats mainly yogurt and baby food. He can't have little puffs, cheerios or anything that is chunky.....yet. We will get there and the therapist feels that it is something we can overcome. We just have to 'wake up' his tongue. This was probably a minor issue when he was born and became more intensified through his journey. But knowing Dylan, there is nothing he can't conquer! In addition to a speech therapist, we will be seeing an occupational therapist to help with fine motor skills and feedings also. So are you counting therapists yet....yes, that will make 4!! But just to make things interesting, we may be doing vision therapy also!! I'm exhausted just thinking about it! But I want to do anything to help D get on track. All of the therapists feel that he is just delayed and not disabled. They have not seen any signs of him being incapable of learning and this is a HUGE praise!! There can be a lot of side effects from chemo and radiation, and some of them we may not see until later in life. Learning disabilities can be one. Another we just learned about has to do with his adult teeth. Because adult teeth start to form at 6 weeks of age, Dylan's growth may have been delayed or halted. In some cases, infants who undergo chemo do not form some of their adult teeth. He should have all of his baby teeth because those form in utero. As of now, he has two on bottom and two on top with two more coming in around his bottom teeth. We will be able to see if he is missing his adult teeth when he is at least 3 years of age....until then, I cannot let myself worry about it....and we can't do anything about it anyways :) And about the teeth he has now....he chews on anything and everything! He chews on cribs, tables, plates, my KNEE....pretty much anything he can get his mouth on!

In 13 days, we will be celebrating Dylan's one year of being CANCER FREE!!! Can you believe it?? I can hardly believe that it has been a year already! I'm in tears just writing this! He is such an amazing miracle and we are truly thankful for each and every day. Thank you to all of you who have cried, prayed, and hoped with us to make this day possible! Many prayers have been answered and miracles seen.....GOD is AMAZING!


The Praskins

Monday, August 23, 2010

Abby Grace

Sweet Abby Grace went to be with the Lord on Sunday evening, August 8th. She had her mommy and daddy and family by her side. I cannot begin to tell you of the heartache that I feel for the Mullens, or the heartache that I feel myself. Abby was so special to us. Her smile lit up the room and her bubbly personality was contagious. When Dylan was getting his transplant...when he was in his worst condition, Abby's sweet face gave me hope. I would wait by the phone in our room hoping Jennifer would stop by the front desk to say hi, and almost everyday, she did. I would trek down the hallway in my jammies (my hospital attire:) and look forward to seeing Abby's beautiful smile and get a warm, familiar hug from Jennifer. Sometimes a friendly face was all I needed to get through the day. Jennifer always joked that she was happy that we got to go we could be the example and she would know what to expect. My response to her was always that we were privileged to get to be an example. There were so many unknowns at the time, and Dylan and Abby were so similar. They were only 3 months apart with treatments, and I was able to help and encourage Jen along the way....and tease her. We grew close, and there is nobody that can identify with you unless they too, have gone through this horrible disease with a child of their own. We had an instant bond the day we met and cried together. Abby and Dylan had that bond too. In the beginning, Dylan was still very young and very sedated all of the time....but that did not stop Abby. I remember one day we went into clinic, Dylan was sleeping in his car seat and Abby was determined to see that baby under the blanket. She practically jumped off of Jennifer's lap to get a sneak peak. It was quite funny. I had to pry her little hands off of the handle of his car was love at first sight!! Anytime we came in the room, her face would light up and she would stick out her hands as to grab Dylan, while her tongue hung out of her mouth. She just wanted to lick him and squeeze him! Unfortunately, Dr. Graham would not allow it. He would always say, NO licking, NO touching, NO kissing! HA! They were both so immune compromised that they could get each other sick. Nevertheless, their bond was immediate, and strong!

We attended Abby's Celebration of Life last week. It was so hard to say goodbye, but also so exciting to know that she is in heaven. She no longer has to bear the pain of cancer and is dancing in heaven in her new body. Please keep the Mullens in your prayers, as this is going to be a very long healing process. I cannot imagine my life without our precious Dylan. And yet, this could have been God's plan for his life. Life is short. Nothing is guaranteed, whether you have cancer, or are perfectly healthy. Please take time to love those whom God has blessed you with and do not take them for granted. The Mullens cannot bring Abby back, but they can make sure that her life had a purpose. Anyone who met Abby was changed. She had a special gift that only she could give. We are all better people for knowing that precious girl.

Thank you for your prayers :)

Living everyday like it's my last,


Saturday, August 7, 2010

Cardinals Training Camp with HopeKids 8/3 and The HopeWalk 9/26

Hi Everyone! We had an amazing opportunity to go to the Cardinals training camp this past Tuesday with Hopekids, and we had a blast! The weather was beautiful in Flagstaff, and it was nice to get away for the day. The Hopekids organization arranged for all of the kids to be able to meet the players after practice and even get autographs! Since our little Hopekid is too small to walk....Erik was able to go with Dylan and get to meet the players too! He was soooooo excited! Although Dylan may not be able to appreciate the experience now, he will definitely appreciate his signed jersey later :) Erik said that all of the players were really nice and that they each took time to talk with the kids. A few players even held Dylan and we were able to get some pictures! The pictures that we have on here are the ones from my camera, but we will have some more "official" ones posted later! Enjoy!

What is HopeKids?? I'm glad you asked....HopeKids provides ongoing events & activities and a powerful, unique support community for children with cancer and other life-threatening medical conditions. They surround these remarkable children and their families with the message that hope can be a powerful medicine. We have been blessed enough to attend numerous HopeKids events....and they are all free of charge to the families. They do everything from sporting events, to date nights for moms and dads, to movies and activities for the kids, to arranging for kids to meet with their hero's one on one. They provide an environment for families to come together with a common bond, and for kids to be able to be around other kids with the same life challenges. Dylan is now a HopeKid hero! When he is a little older, we hope to be able to go and visit other families that are in the hospital and encourage them with Dylan's story and smile. HopeKids really helped us specifically in the first few weeks when Dylan got diagnosed. The way the laws are now, nobody is allowed to contact you or talk to you unless you 'sign up' for their services...and we are so happy we checked the HopeKids' box. Bridget (from HopeKids) called me with the name of a family that had a young boy, almost the same age as Dylan when he got diagnosed. This was the first family that I had heard of with a child as young as Dylan. Little B's mom was able to encourage me and give me hope through their experience and give me an idea of what I could expect. We were surrounded by negative statistics and circumstances, so B's family was such a huge encouragement to us. God works in mysterious ways, and we are so thankful that He brought us to HopeKids! A big THANKS to HopeKids for all they do for families like ours and the Hope and encouragement they bring to the kiddos!
HopeKids is having a Hope Walk on Sunday, September 26th. We are going to be out of town that weekend and sadly will not be able to attend. BUT we still want to be a part of raising money for this amazing organization. If you would like to make a donation, please click on the following link . Our goal is to raise $1000. If you would like to participate in the walk, here is the information:

Location: The Plaza on Market Street at DC Ranch, 20645 North Pima Road Scottsdale, AZ 85255
Date: Sunday, September 26th, 2010
Registration: Starts at 7:30 AM
Time: The 5k HopeWalk begins at 8:30 AM
Fundraising goal: $65,000
All proceeds to benefit HopeKids and will help provide HOPE to children battling a life-threatening illness and their families.
Please join us for the 2010 HopeWalk around the beautiful community of DC Ranch in North Scottsdale. Last year, more than 500 people came to WALK FOR HOPE and supported HopeKids by raising over $55,000!!


Thank you for supporting us! Remember that no donation is too small :) Have a great week and I will post more pics later :) Love you guys!

Walking by faith,
The Praskins