In a few short days Kate will be 5 years old. Yes, I am going to start using her real name.
Wow, it’s really hard to believe how quickly time has gone. All parents say the same thing – ‘it goes so fast’. And it is absolutely true. I can’t believe the things that have come to pass in 5 years. The incredible journey our family has been on.
I have a goal this month, inspired by Kate’s ‘birthday month’. I’d like to try to post daily in October and tell you Kate”s story a little at a time. (I hope it won’t take longer than the 31 days of October). It is sort of my version of that popular writing month in November, NaNo that one of my girlfriends keeps trying to get me signed up for.
Since I started this blog, this has been an idea of mine, and as I wrote my 9th post this past week I really felt like telling the story would provide so much context for all of you reading. Some of you know bits and pieces, and some of you don’t know our story at all. So here it is, from the beginning.
October 11th, 2007
Well, actually…let me back up a bit more. For any of you who have had a child undiagnosed, or diagnosed with a chronic condition. You can relate to doctors asking you endlessly about your pregnancy. I can’t count the number of times I have been asked, and am still asked. It sort of sets up us for the ‘blame game’ (more on that in a future post), about what me might have done wrong in our pregnancy.
- Did I have too many Cokes?
- Should I have been running, doing yoga, swimming?
- Was I standing too close to the microwave?
Kate was a typical pregnancy. Other than I felt incredibly nauseous the entire 9 months. It was brutal. I did take diclectin. I was worried about this, but assured by my family doctor that it was safe. It really had no effect for me, so I stopped taking it after a few months. After Kate became seriously and chronically ill, I did investigate this medication further as I had heard it was under investigation for side effects – there are potential side effects being investigated, but none would explain Kate’s multiple conditions.
Kate was also a ‘normal’ delivery just shy of 40 weeks. No epidural (that was a mistake!) and had a great APGAR score. She nursed well, was content, and there were no concerns. She was perfect.
Mommy Suspicions, Intuition
As you know, newborns are ‘floppy’ as they have very low tone. You need to support their heads and be cautious of their necks. Gradually in the first 3 months, this ‘tone’ improves and they begin to hold up their heads and don’t need quite as much support. Kate’s tone, was the first indication that something might not be right. The need to support her head and be cautious when lifting her continued into her 4th, 5th and 6th month. Tummy time was impossible as Kate would be stranded like a fish out of water and unable to lift her head, let alone support her torso. Rolling over was another milestone that did not take place when expected and took months of eventual physiotherapy to find success. At 9 months, Kate couldn’t sit alone without being propped up or supported in some way.
Kate also had a pretty significant torticollis which caused her head to turn mainly one direction and resulted in ‘flattening’ on one side of her head. This torticollis was caught early by a nurse practitioner at CHEO who had treated Kate for before, and Kate was immediately referred to weekly physiotherapy to help correct it. I’m really not convinced the physio did much in the long run – except frustrate both Kate and I. At that time I was pretty naive about doctors and therapists and what advice I should follow blindly and when I should ask more questions about treatment and methods.
Our second ‘clue’ was that Kate had a lot of reflux when nursing. We came to know this as GERD and it was one of the first conditions Kate was eventually diagnosed with.
What caused me the greatest suspicion that something might not be ‘right’ with Kate was my concern about her hearing. At the age of 4 months I started to notice that Kate was not turning in response to my voice or Brian’s. She may have heard loud noises – but her responses were inconsistent.
As any parent, I attended ‘well baby’ check ups with our family doctor. I raised my concerns and suspicions with him. The response I received was both vague and alarmingly imprecise with his assessment of KK. As I look back on it now, I harbour a lot of resentment toward that doctor who didn’t take a closer look at Kate and take my suspicions more seriously. To this day I am not over it. He assured me that ‘babies develop at different rates’, and ‘Kate had passed her infant hearing test’.
It was when Kate was 7 months old that a good friend of mine, who also happened to be a pediatrician, questioned Kate’s development and how she was doing. I shared my suspicions and concerns with this friend, and she listened very carefully. As I look back now, I realize that this friend had been noticing things with Kate and was taking an opportunity to raise it with me. She asked if I would like her help in obtaining a pediatrician for Kate that dealt with children where there were concerns. She also asked if she might make a referral to a developmental pediatrician for Kate. I told this friend I was grateful as I really was starting to feel that ‘something was wrong’ and felt my family doctor was either not responding to my concerns or did not feel any action needed to be taken.
So at 9 months, we met the developmental pediatrician who was the first to truly ‘assess’ Kate and it was then we heard the words ‘global developmental delay’ spoken for the first time. The developmental pediatrician was also uncertain about Kate’s hearing loss, and performed ‘highly scientific’ loud clapping or shouting close to her to see if he could get a response. He had enough suspicion about her hearing to refer her to the audiology clinic at our children’s hospital.
I feel like I should say my world was rocked, shattered, devastated, but it wasn’t. As I think back, I know Brian and I must have been upset. But what I remember is feeling relieved. Relieved that my suspicions and mommy intuition hadn’t been off their mark. I felt validated and I felt calm. I knew that now someone was taking us seriously and we would get KK the help she needed and get back on track to ‘normal’.
I had no idea what was to come.