Hope for Life

The silence here at night is deafening. Once in awhile a child screams out in pain and I am numb to it. There was a time I would have cringed at that sound, my heart would have ached for them. Not now. Now I think 'thank god that child has the strength to scream, the energy is there, they are alive.' Alive...not well, but alive. I took too much for granted, now I need hope for life. Stay strong little man...you are my hero.

Saturday, March 9, 2013

Time Sure Does Fly!

Again time has flown quickly and before we know it, another year has passed since our last update. Ayzac is still kicking and some developments have happened, some good, some not so good.

The gene that has caused Ayzac's unique form of Mitochondrial disease has actually been found, it is called RMND1 and as far as anyone can tell, Ayzac is the only surviving child with it. Other RMND1 cases have been found, but those babies passed at 2-3 months. (McGill University in Montreal published about the gene finding, just two days before UBC discovered it too.)  While this discovery will do little for Ayzac, it will hopefully do a lot for future RMND1 babies and possibly more.

Ayzac has maintained basically the same path this past year, in and out of hospital but had a record breaking summer last year with almost 14 weeks home with no admits! The largest concern is his many bouts of pancreatitis, a very painful and life threatening illness. While he has obviously survived each bout, it is not without consequences; each time injures his already fragile kidneys, to the point that he is now in renal failure and his time on this earth is drastically limited now.  It has also been discovered he has a gene anomaly that leads to these frequent bouts. He now has a G-J tube as his tummy doesn't tolerate feeds and meds well anymore, so they are given to the jejunum (lower tummy) now to help prevent vomiting. He also had to have a VAD moved, then finally removed due to constant infections (which are normally very rare).

We all still hope for the best but of course accept this reality and are preparing for our goodbye's. No amount of preparation, counselling and planning will help in those final hours, but it can give us a tiny sense of control over something we cannot ever hope to. The family remains as strong as possible, tight knit and loving and riding the waves clinging to each other for love and support as best we all can.

Ayzac is a beautiful boy, who loves life, smiles almost every day and takes immense enjoyment out of even the smallest thing. His latest favourite (other than his jolly jumper) is touch screen phones, how fun they are to lick and touch! How fun it is to see the look on mommy's face when it is thrown to the hard floor! He actually kinda gets the concept of flinging the birds in one game and thinks it's very funny. He also simply adores his play mirror, he loves smiling and nodding at the handsome fellow who is reflected there. He has learned more signs, but his favorites are still "what?" "meds" and "mom". He also has a special smile and almost evil chortle reserved for when he has filled his diaper with something especially heinous. I think he just likes the look on our faces.

During the past year, his mom, dad (Mo) and siblings were forced to relocate from 100 Mile House to Vancouver and be within a one hour radius of BC Childrens Hospital at all times.  When home, Ayzac now has nurses through part of his day which are a huge help, given the sicker he becomes, the more complex his care is. However, his nurses adore him so much and dote on him so completely; that they leave almost nothing for mommy to do during the day. This left his mommy feeling lost and not knowing what to do with herself,  having done the lions share of his complicated care herself until this point; and so, inspired by her sick boy, she enrolled in nursing school with hours that work around Kazzdon (7) and Taija's (5) school hours and Ayzac's nurses schedule. Once nurses are gone and children home from school, she tends to the children, takes over Ayzac's care, maintains her home and then it's homework and research until the wee hours. Mo, Ayzac's daddy is there a week out of each month when off work and good luck prying that baby out of his arms! Even I (Gramma) have to plead to hold the precious child if daddy is around! For those who may not know, Mo stepped into the shoes of being a father for Ayzac when the position was left vacant almost 2 years ago and he has deeply fallen under the Ayzac spell and Ayzac loves this man more than anyone (even mommy sometimes feels slighted, lol). It takes a big man to take up the role of stepfather to three children and even a bigger one to take over the care and loving of a sick child who you know you will lose at some point. I will be forever grateful to Mo for giving my little grandson the daddy he needed and deserved, so he can know that kind of bond and love in his life. Kazzdon and Taija both report that: You rock socks daddy Mo!