12 November 2013
First of all wow ... time flies - the twins were born September 11, 2013 and at 33 weeks premature. That left me in California, once again living in a hospital in the NICU without my family for 2 weeks - extremely hard on me but my hubby finally brought my boys to me for Nickys birthday... yep Nicky is 4 Sept 22 we spent go carting and acarade and firehouse chicago pizza and balloons and presents and madagascar cake and we finally got to sing which he LOVES! Thank you Jesus! Wasn't exactly how we wanted to share it but, we were all together that is all that matters! We had to rent an RV, my dad flew down to drive with nick. The drive was 39 hours to get home due to altitude the babies could not fly.... thats the fastest way to some it up lol! This bring us right into October that seemed to fly by ...
So very sorry for the delay in updating, it's been a busy time for us all! The twins are over 2 months old and Nicky has proven to be a great big brother! Who knew ? He likes to point out what he thinks they need and when one cries he's like awe baby and kisses their forehead! Heart melting moments truly. It's shown a mature side to him being around them and it's been amazing.
We started dives at the Oxford Hyperbaric Oxygen Therapy center. I know I mentioned we were looking into it but my mind was certainly made up after speaking openly to a radiologist about Nicky's situation. I was bluntly told that while Nicky exhibits no side effects from the radial changes / damage, that eventually if it doesn't stop that he will. All of our teams, meaning St Jude, Boston Mass and U of F all believe this is the least invasive way to attempt to stop the damage - in no way at all can these treatments harm him - in fact it could benefit him in many other ways. The treatments are not covered by insurance but that's a risk we are willing to take in order to prevent any further damage. The treatments are at 5pm so everyone's home for me to take him or Nick, we alternate. So I couldn't be happier that he walks right into the clinic we switch to scrubs and pick a DVD and we has been amazing the 11 dives we have done. Halloween came and gone the weather was horrible so we spent it at HBOT instead.
It also worked out well because of Nicky's school schedule. His IEP evaluation was delayed due to his old nanny not willing to email the excels on him to me and made us wait 3 weeks to get a binder that is already completely a waste because he's doing more and more daily and she clearly didn't update it. AS to why she wouldn't email them, only God knows, but we are grateful she is no longer in our little mans life after doing this to him. So I had to redo them all so his Eval could be done - two teachers that will come to our home again also to work with him. He will be part of the hard of hearing program. We already know he qualifies for hearing and speech which is exactly what we needed. They will pair him with another child to work on these tasks. I will be there with him most of the time, which is great because I will know exactly what to work on at home.
So could we do these dives 1hr 30 mins long for 40 treatments and it may not change the radial changes - that's a possibility but I believe in my heart I have to follow my gut and God given instincts and do this. It's our time, our energy, our love for our son to try all we can to make the best choices for him at all times.
I also forgot to mention that prior to starting HBOT we were told he needed his tubes put back in, and we did that after 3 dives and we are so glad we did he feels no pressure at all! So we are placing our hope in God that these treatments will only heal our little guy.
We got referred to Oakland County for Nicky's hearing through the school and he will have a new baseline done here and new lighter smaller molds will be made finally for his hearing aids. The school will be working with us and him to get him to want to use them - currently we had them turned down by 25% to ease him into liking them. They were so loud he would hide or cry and all the audiologists have told us not to force him or he will hate them. So now that we have a team from Bloomfield Schools working with him directly - we know eventually we will get there but on his terms because we do not want him to hate them or feel forced.
So we will be returning to St Jude for his scan that is Jan 22, 2014 - while I hate Wednesday scans at least it will be reviewed at the Brain Tumor Board meeting that day. We are praying our hearts out that these changes heal and that our son remains cancer free. We ask you to please do the same and that Gods almighty hands are on our Nickybear!
Keep your hands on our Nicky and let these treatments help him daily. Please keep our precious boy cancer free and let him be healthy and well .... thank you Lord for our family !!!