Tuesday, September 10, 2013
This is an excerpt from our prayfordylan.com blog on the big day. 09/11/2009
Thank you everyone for praying today!! The whole process was very anti-climactic :) They basically brought in a syringe of cord blood (that was previously frozen) and then it was given through his broviac. The nurse pushed in 60cc's over about an hour while I held Dylan in my lap. They had him hooked up to monitors to check his vitals every 10 minutes. His blood pressure went up during the transfusion, but that was expected. There was a short time when they put him on oxygen because his stats came down a little bit, but that was due to him being frustrated and crying. There is a preservative in the blood (since it is frozen until use) and it makes the recipients breath smell like creamed-corn. So while Dylan was getting his cells, he was breathing out the creamed-corn breath!! The whole room was filled with the aroma--it was quite strange, but interesting :) So if you would like to know what his breath smelled like, then open a can of creamed-corn and take a WHIFF!! Ha!! I know that some of you are going to do it! :) He is now resting comfortably on Grandma (Erik's mom) and is trying to get some sleep. He has only eaten once today and does not seem very hungry-so his eating days may be coming to an end for a while. He will be put on TPN (total nutrition through IV) tonight, so we will not have to worry about him eating.
THE NEXT STEP:
The next step is the waiting game.......wait.....watch....and pray. The new cells will start to engraft in about 7-10 days. That is when they will be starting to reproduce and fill his marrow with new healthy cells. The final goal is to have 100%donor cells and 0% Dylan cells. This whole process will take about 3 months to be fully grafted. The side effects will be coming soon-usually within 3-5 days. His mucous membrane throughout his GI tract will be stripped, and because D does not have an immune system right now, he will not be able to replace it. That is when the sores will come. On his bottom, his throat, and his mouth--this is unavoidable after transplant--so please pray that it is minimal. IF the sores in his throat get bad, they may have to intubate him and place him on a breathing machine or ventilator. If this is necessary, he will be moved to the PICU and will be unconcious for 4-5 days. He may get a rash, fevers, and nausea. All of these things are to be expected and will all be temporary. They will usually subside within the first two weeks. During this time, Dylan will not be able to have visitors because of his non-existent immune system. This is now the time for his body to start healing itself from the inside. Please pray that the cells engraft quickly and that his body does not reject the new cells and the new cells do not reject his body. They say that children, particulary babies, are very resilient and that he should recover quickly-and that is what we are praying for!! The battle is not over yet, and in a way, we have just begun. Today is day 0-and tomorrow will be day 1 post transplant. We cannot wait to get into the higher number of days!! Thank you everyone for being diligent in praying for our precious boy!!
Whenever I think back to all of those months in the hospital, I always get overwhelmed by God's amazing grace and mercy. He carried us through so many sleepless nights and days on end crying on our knees. We are so thankful for this amazing little life that has been entrusted to us! Thank you for all of you who have prayed for Dylan in the past and for your continued prayers. We have a long road ahead of us, and we may encounter more trials, but we will do it knowing that the Lord will carry us through no matter what the circumstance. Praise God for healing our little fighter!
Sunday, August 11, 2013
Last Tuesday was Dylan's first day back at Preschool. When we attended the meet the teacher night the week before, Dylan greeted his teacher with a growl. Great Start! Tuesday went a little better. His classroom is on the opposite end of campus than it was last year, which still confuses him. I am sure after a few more weeks he will get the hang of it. His teacher this year is Miss Megan. She is super sweet and Dylan seems to be warming up quite well to her and the other aids in the class. Dylan thrives off of routine, and that is exactly what he will be working on in school. He will be getting occupational therapy, physical therapy, and speech therapy in school. Unfortunately, he was denied for ALTCS, so we will not be getting any extra therapies outside of school at this point. We are really bummed, but know that all of this is in God's hands. It is hard not knowing the future or how to get where we feel we need to be. God knows the details, and He will take care of it. But it is so hard for this mommy's heart...please pray for me!!
Enjoy the pics of his first day!! I know I will always treasure pictures like these. We tried to grab a few outside before we left....but it was raining...and Dylan was being....well, Dylan! He is not a fan of my camera! (Better get used to it buddy!!)
Putting him up on the ledge was the only way I could get him to hold still!
They are best bud! ......MOST of the time
STEP 4: PLAY!
Thursday, August 8, 2013
This summer while we were on vacation in California, we had some wonderful family pictures taken by Kristin with KBH Photography. She is amazing! I have known her for years and I love her photography. We found out that she was going to be in Cali the same time as us and we could'nt pass up the chance for beach pictures! ENJOY!
Tuesday, July 16, 2013
I think these pictures capture Dylan's personality in a nutshell. He is one of the happiest kids I have ever met. The simplest of things make him laugh and giggle, and that laughter is contagious. He has a almost a magical way of making people fall in love with him. Strangers in the grocery store, at the park, or wherever we go are all drawn to him. He is special. He is our miracle.....
A couple of weeks ago we went to see a Neuro Psychologist. His oncologist believes that some of Dylan's delays are not "normal" reactions to his treatments. Dr. G has dealt with many, many children going through treatments, but nobody has gone through exactly what Dylan did, and especially not at the age he did. Before doing any MRI's or other tests, we were advised to see a psychologist.
I went into the appointment with Dylan knowing what they would probably tell me, but not wanting to hear it. We know Dylan is behind....really, really behind. We can see that he is not like his peers and emulates peers over half his age, including Andrew. We have always been told by therapists that he was just delayed and that he would catch up. This has not been the case.....
The psychologist spent a couple of hours interacting with Dylan and going through a series of tests and games to gage where Dylan was developmentally. If I did not know Dylan was behind before, I definitely knew now. I watched as he showed him pictures and asked him questions and I watched Dylan like I have never watched before. I saw his little mind racing and trying to figure things out, and other times I saw the blank stare on his face as though the Doctor was speaking a foreign language.
After the doctor finished his tests, he concluded that Dylan is functioning at a 2 year old level and below in some areas. He believes that the chemo and radiation had a far greater effect on Dylan's brain than what was expected or "normal". He has officially diagnosed Dylan with a Major Neurocognitive Disorder Due to Another Medical Condition, without behavioral disturbance. The white matter in his brain has been disrupted causing primary deficits in attention, persistence, and short-term memory/memory encoding.
What does this mean to us? This means that nobody can tell us what Dylan will or will not do. Only time will tell. He is currently progressing, but at a very slow rate. But any type of progression is good. This means that Dylan may or may not catch up and be "normal", and more likely that he will always be behind developmentally, and posssibly severely delayed.
Aside from any and all diagnoses....we are thankful that Dylan is here. We have been blessed beyond measure from the joy that this child has brought us. The joy and laughter overshadow any and all of the heartache and pain that we have gone through. He is a blessing. He is perfect in God's eyes, and he is exactly how God wants him.
As parents we always want whats best for our children. We want them to grow up, learn to ride a bike, go to college, get married someday and have our grandchildren. We have to realize that these things may never happen for Dylan and that is very hard, however trivial that may seem. Please pray for us as we embark on our journey with a new perspective. We are learning new ways to parent him and to help him learn. His brain functions a little differently than most. Everything right now is a little overwhelming. We know that we cannot do this alone and that the Lord will be our strength in times of weakness. We know that the Lord has blessed us with amazing friends and family who will not leave our side and will be there to pick us up when we fall. We know that we have thousands of prayer warriors out there praying for our family and our precious Dylan. We know that God is a god of miracles and that He can completely heal Dylan. Whatever the path that God has chosen for us, we will walk boldly and give Him praise. We are thankful that God has chosen us to be Dylan's parents and that we get the privilege to raise this amazing little boy. Thank you for being part of our journey! You are loved and appreciated more than you will ever know!