Again, time has completely escaped me. We are already into the first week of June…the clock is ticking towards Ciaran and Shay’s first birthday…unbelievable! Absolutely unbelievable…where does time go…I so wish that I could slow things down…I can’t…so I work on savoring every moment…
Well as you can imagine, a lot has happened in the past two months. Ciaran and Shay are doing awesome. Albeit, there remains a number of significant concerns surrounding their development – they are showing us that it is nothing that they cannot handle. We have a constant flow of therapists coming through our house to work with both boys. Every single one of them have commented on the fact that both boys are continually surpassing everyone’s expectations of them – which I am loving. Ciaran and Shay are teaching so many of us not only the power of determination and hard work, but more importantly, to never settle.
Simply put – never settle…don’t settle on a set diagnosis (professionals can make mistakes – and in our case – they have a few times), don’t settle on mediocre expectations...the higher you set the bar…the more success you will see…don’t settle on taking things at face value…in our case, you can read about our boys on paper as many of the professionals have and come in expecting very little…and they leave …realizing that our boys are completely capable…completely able…they thus learn to set limitless expectations...important lessons for all of us...
As I have mentioned on a number of occasions, my ultimate goal is to ensure that Ciaran and Shay reach their fullest potential. All I can hope for is that they have a strong sense of self and that they believe that they can do absolutely anything if they set their mind to it. I want them to believe in themselves…I want them to continue to surpass expectations…I want them to be happy with who they are…
I want them to continue to teach me life long lessons. Lessons that will forever affect the way I see the world. Lessons that remind me of the importance of keeping perspective and looking at life from a glass half full perspective, rather than a glass half empty. Ciaran and Shay have taught me that I do not need to accept a determined destiny, that pushing the limits is not only powerful, but extremely rewarding and that the power of believing is second to none.
Speaking of believing, we had Ciaran and Shay’s Baptismal ceremony on May 3 at Holy Rosary Church. The service was absolutely perfect! Father Dave who has walked closely with us on this journey presided over the service. He spoke so personally about the boys. We really could not have asked for more. As I said, the day was perfect. We were surrounded by our caring and loving family…we are so blessed. A number of our family members overseas have recently had masses said for us – we thank you sincerely for continuing to keep us in your thoughts and prayers. The prayers are working and for this, we are so thankful.
Both boys have had double ear infections in the past two weeks. It was their first ear infection and hopefully their last for awhile. Shay was obviously unwell, and it was obvious that he was sick. Ciaran, of course, being the happy go lucky self that he is gave us no indication at all that he was feeling under the weather. After being told that Shay had a double ear infection, I decided to bring in Ciaran to see our pediatrician (who is unbelievable!) the following day just in case - even though he looked far from sick - happy and smiling all day...sure enough, he too had a double ear infection. Both boys did two rounds of antibiotics and are now infection free.
Because of the infections - we had to cancel their hearing tests that were supposed to be last week. We have rescheduled for mid July - as the infections would definitely effect their hearing...both boys have fluid in the ear so testing them at this point would result in inaccurate results. Other than this week, Shay is really responding well to his audio verbal therapy. He appears to hear most of the time as he usually turns when his name is called. He is also beginning to babble a lot which is awesome! So far the therapists working with Shay’s hearing are really happy with what they see ...we remain very hopeful!
Ciaran continues to be monitored by the Neurosurgeon. We had an appointment with him last week that went well. We are still not out of the woods with regards to the shunt...however, he continues to not need it at this time. In this regard, we too remain hopeful. Ciaran is now on a wait list for a MRI – this is to provide us with a better idea of what is going on and to ensure that there is no need for a shunt at this time. The wait will be a minimum of 3 months. We hope that it will provide some good information for us.
Recently, we have become aware that Ciaran is struggling with his vision. The issue surrounds how his eyes are communicating with his brain. We have been seeing a number of specialists regarding this. His right eye is worse than his left, so we are currently patching it for an hour each day and hence trying to train the brain how to use the eye in this most optimal way. In a month, the Optical surgeon has already seen huge improvements. Thank goodness for this as it provides hope that his vision can continue to improve. The brain is a pretty amazing thing - it is crazy how much of an impact stimulation can have on the brain and brain networking at this early age...our goal is to continue to create networks that will strengthen the communication between his eyes and his brain.... so far, so good as the therapy/patching indicates significant improvements. We continue to hope and pray that he will have functional vision. We do know that he will likely have surgery at 18 months corrected to straighten out his eyes – which apparently ‘is not a big deal’.
That is all the news for now...we are feeling good believe it or not...we are so hopeful, and we are so thankful…we love how determined our boys are…and we love that they are continually proving some of the professionals wrong…we will continue to expect nothing but the best for our boys…we hope that you will all join us in looking for all that is right in our world…rather than seeking out what may appear to be wrong…because in our eyes…everything is just the way it was meant to be!
Thanks for your continued thoughts and prayers…
Lots of love,
cris, liza, ciaran and shay
ps pictures to follow tomorrow - that is cris' job as i don't know how to shrink the files :)