Wednesday, June 24, 2015

One more week!

Hi guys!! This past week has flown by! We have had many visitors and have really been soaking up our last days here in paradise.  We are dropping off Mema at the airport in the morning and picking up daddy! We are so thankful daddy can join us for our remaining days here.  We plan on seeing the fireworks on the beach over the 4th of July weekend and then pack up and head home on the 6th.  I really have mixed feelings about going home.  On one hand, I am really excited to be home and get back to normal life....but life is also starting to feel normal here too.  We are definitely NOT looking forward to going to 115 degree is going to be hard to get used to that after living in the gorgeous weather here.  We really don't want to leave our new friends from the clinic either.  They have been our constant encouragers every day and have cheered us on with Dylan's growth and change....we will surely miss them all! We are planning on coming back every 2-3 months to get a follow up EEG to check on Dylan's progress. 

This week we had a little scare.  More like I freaked out.  When we were home a couple of weeks ago, Dylan had fallen and hit his face on a stool.  Well that bruise is still not healed and actually looks almost the same as when he got it.  It has not gone through the normal bruise healing stages.  I had not really noticed it or paid any attention to it, but when my mom saw him, she thought it was strange.  We showed a pediatrician and they said it was not normal either.  NOW ENTER MOMMY FREAK OUT MODE.  Sometimes being a parent is the most stressful thing ever...and being a parent of a cancer child is enough to give you a heart attack at any sight of anything abnormal.  I called Dylan's oncologist and explained the situation to him.  He did not seem to freak out which made me feel a little better...but the only thing that would put my mind completely at rest would be a blood test.  I asked Dr. G for an order for a CBC....30 minutes later we were in the lab getting his blood drawn.  We got a call this morning that his blood results came back 100% perfect! PRAISE GOD!! It's amazing how one second I can be getting frustrated with Dylan for being a nut ball and not listening and the next, I am praying with all my heart that nothing is wrong with him.  I am thankful that God gave me that little reality made me step back and look at life and what it would be like without Dylan.  I cannot begin to describe the horrific thoughts that went through my head.  I take him for granted. I take his health for granted.  I take everything for granted.  We are not guaranteed any amount of time here on earth, and we really need to make the most of every moment.  I hugged my boys a little tighter today, I spent extra time admiring my amazing mother and the time I get to spend with her, and I thanked the Lord for all of the incredible blessings he has given me.  

Well, no more mushy gushy are some photos from our day at the beach on Saturday! ENJOY! 


Monday, June 8, 2015

Busy Busy Busy

Hi guys! Things have been crazy around here.  We were able to make it home for few days a couple of weeks ago and now we are heading back tomorrow for a few days. Dylan has a routine eye pressure check on Wednesday morning.  He still has to go under anesthesia because he will not let the doctor anywhere near his eyes with the probe.  I don't blame him, it would be hard for me to do too!! While he is under, the doc will also check his eyesight to see if we have to change his prescription.  He has been in the same glasses for 18 months so it is likely that he will need new ones.  During the last eye pressure check, the doctor notice a cataract forming in one of his eyes.  Hopefully it has not progressed.  The doc said that if it continues to get worse, they would most likely need to do surgery to fix it.  He said that it may work out in Dylan's favor as he gets older because he could get new lenses implanted into his eyes and eliminate the need for glasses.  Hopefully all of this is far down the road!

Wednesday evening we are headed to the capital building to film a video about cord blood donation.  There is a group trying to get information about cord blood on the ballot and they want to use Dylan's story to help raise awareness.  We are so thankful that the Lord has been able to use Dylan to reach so many people and to help others.

We are also headed home for a special event! Dylan has been chosen as the Leukemia & Lymphoma Society's Boy of the Year to help raise funds by the participants from the Man & Woman of the Year Competition.  The final event is on Friday and we are excited to celebrate with everyone! Someone donated white tuxes for the boys! I cannot wait to see how cute they look in them! They will be sporting white tuxes with orange bow ties for Leukemia....I am pretty sure they will steal the show!! I am really hoping Dylan cooperates and wears his snazzy least for a few minutes so I can get some photos.  And, they are white....not sure how long they will STAY white!!

So what's been going on here in San Diego?  We MOVED! We moved on June 1st to the cutest little bungalow guest house located in La Jolla.  This house is a gift from God! It is a one bedroom, one bath little house located behind the main house.  We are 6 blocks from the beach and about 40 minutes from clinic.  We LOVE it here.  There is a back patio where the boys can ride their bikes around and play and explore, and there is a nice big living area for us to spread out that has gorgeous natural light.  This place makes me happy.  The boys can be loud and rambunctious and we are not bothering neighbors to either side of us and below us.  WE ARE BLESSED! And on top of it all, it cost a lot less than all of the other places that we could find for June.

The Plan:  Dylan is continuing to progress with his treatments.  It is truly amazing to see his brain soaking up more information and to see the little changes along the way.  But we need to get back home.  We need some structure and we need to be together as a family again.  We have made a decision to move back home the weekend of July 4th! YAY!!!! The doctors are confident that Dylan will not regress and will progress with speech therapy and school.  We are so excited to see what this next year holds for Dylan's growth.  We are planning on coming back every 3 months to get follow up EEGs to track Dylan's progress.  The clinic has graciously extended their offer for treatment and we are welcome to come back for a "refresher" any time.  We could not be any more thankful for everything they have done.  They all feel like family now, and we will definitely be sad to leave them.

Dylan is talking more and more every day.  He is still pretty feisty and fights me on a lot of issues, but that is to be expected with his growth and I am ok with that.  His drawings are continuing to change and new ones are being drawn every day.  He REALLY loves singing now.  Last month, he only liked one or two songs as his favorites, but now he LOVES THEM ALL.  These boys are singing everywhere we go! They especially love singing "Jesus Loves Me"...and very public.  It's funny to see people's reactions.  They are little evangelists! His other new favorite is "Monkey in the Tree"...or that is what he calls it.  He gets soooooo into it and laughs hysterically and loves the end when the crocodile snaps the monkey out of the tree.  If you see him, ask him to sing it. He will gladly oblige.  That and "The Wheels on the Bus", complete with 5 verses.  I love these kiddos!! There is definitely never a dull moment with them around.

Thank you for following along and for praying for our family! We love you all!!!

A few weeks ago we drove up to Santa Monica with my friend are a few of our photos from that weekend!!  ENJOY!