When Ian was born at 5lbs. 4 oz., we reveled at the fact we had such a cute, small baby. Our first child had been almost 9 lbs. and we were enjoying carrying a lighter load. When Ian had to be awakened for every feeding and would only eat 2 ounces. at a time, we assumed it was due to his small stature. The physicians reassured us he would catch up. At seven months, Ian was not catching up. His head was in the 95th percentile and his body was below the third. His little body wasn’t even considered to be on the growth charts. When he was unable to eat foods without gagging at 8 months, and he continued to drink poorly, our ongoing concerns, which started soon after birth, caused an incredible feeling of trepidation. The physicians continued to say he would catch up, but that was no longer acceptable. Thus began our journey of advocacy for our son. After a myriad of tests at eight months resulted in no apparent cause, it was our continued persistence that led us to a geneticist and a diagnosis at nine months. We finally had our answer to why our son was different. Our journey with Russell Silver Syndrome had begun.
Ian suffers from hypoglycemia, which has resulted in extended hospitalizations. He also has severe cranio-facial abnormalities affecting his orthodonture, has undergone many RSS related tests, gastrostomy surgery, speech therapy, feeding therapy, and, of course, an abundance of physician appointments.
Currently, Ian is 24 lbs, 34 inches and thriving very well. His recent G-tube surgery has helped him maintain blood sugars through regulated and continuous overnight feedings. He has an incredible amount of energy and his little body is much more capable of dealing with the recent bout of colds that are forever lurking in our environment.
Our next agenda is to determine where Ian fits in the scheme of things for growth hormone, determining where he is at with catch-up growth, and teaching Ian and his body to eat volitionally while scaling back on tube feeds.
Russell-Silver Syndrome is a never-ending process. There will always be decisions to make about Ian’s overall health. There will be continual questions concerns and worry. There will be ongoing advocacy and debates with physicians who are not well versed with this rare syndrome.
Fortunately, God gives me strength, patience and the love of friends, support groups, family and physicians to get us through each day. And more importantly, there is the MAGIC Foundation. Their enormous wealth of knowledge and incredible support is what helps each of us cope with the struggles of this chronic health issue. MAGIC has provided me with the strength to go forward with a wealth of information that otherwise may have been difficult to find on my own. It also brought me closer to the other families who are struggling with similar issues. The tremendous amount of kindness and sympathetic views bestowed upon me by many mothers in similar circumstances was astounding. I may not be able to personally thank these families, or the MAGIC Foundation, for their grand display of support, but I can guarantee they will always have a special place in my heart. And during our continued struggles or as we celebrate our successes – through this website we will share our stories, chat about our concerns, give our thoughts, ask our questions, and lend heartfelt advice.
So whether we have terrible days, bad days or good days, we have a beautiful life ahead of us. And when Ian laughs, fights and hugs his brother, gives me hugs and kisses, and tells me he loves me – I know everything is going to be okay.