I feel like it's important to start out with the fact that not ALL Williams kids are medically complex or fragile. They each have a portion of their genes deleted off of one of their Chromosome 7 (fun fact: we each have two copies of each chromosome -that's 46 chromosomes total, arranged into 23 pairs - one copy is from our mother, and one is from our father). Some have larger deletions than others, some will have more of the possible risk factors than others, and these two things are not mutually exclusive. I've met parents of children with larger deletions like Griffin who have almost no issues, and I've met parents of children with smaller deletions who have similar cardiac defects or thyroid issues as Griffin, or even more issues. So, their deletion doesn't indicate how severe the problems will or won't be for them. Griffin just so happens to have a larger deletion and more of the possible issues, coupled with the fact that he needed intervention early in life which always ups the ante and risk factors.
So, if you find yourself with a new diagnosis of Williams Syndrome don't fret, it's not necessarily as bad as it might at first seem or upon doing some research.
But, for those who do find themselves with a pretty complex kiddo (whether that's due to Williams or an entirely different diagnosis), here are some helpful tips I have found that works really well for us and eliminate a lot of stress:
Get thyself a calendar/planner IMMEDIATELY!
· If you do nothing else on this list, do this one. Having a single place to go to for appointments, procedures, dates, and records of feeding input/output, or O2/heart-rate/respiration/weight tracking, whatever - you name it, it goes into the book - is absolutely indispensable. We always think we will remember dates and all the details of everything that has happened, but with kids that do multiple stints in the hospital, multiple surgeries, lots of appointments, lots of changes - you won't, I assure you. This doesn't make you a bad parent or unable to manage, there's just too much to keep track of. Get the calendar with the monthly view, and if possible also a weekly section with more space for more details. I utilize highlighters and different colored pens frequently for quick reference (weekly weights are pink, appointments are always in purple pen, O2 and NG tubing change days are highlighted blue, ect.) and that also makes my life a whole lot easier. The best example I have for how invaluable this book is (I lovingly refer to ours as The Book of Griffin) was at his last admission into our local children's hospital. Epic (which is an electronic medical record system that many hospitals use nationwide) is great, but the migration of information from one health system to another is not without flaws and errors, so when you go to different hospitals around the country you cannot depend on all the information to be there. When we went to Primary Children's in Salt Lake they don't even use Epic, so to get those records everything has to be done the good old fashion way: fax or snail mail. So when we landed in the ER here with him in respiratory failure, what felt like five million doctors, nurses, therapists, and everyone else on the planet buzzing around getting him admitted and intubated and saving him, I cannot tell you what a relief it was to have this book when the admitting NP came to me asking for details of his past two surgeries and recoveries and everything else in between. Rather than trying to remember every detail, date, and time in the midst of chaos and what felt like my heart shattering into a million pieces, I just pulled out his book and read off all the dates highlighted in yellow, handed them his daily medication sheets I had made, and every personal record and document I had for him regarding his hospitalizations and overall health. I'll tell you too: the medical staff loved it as well. Rather than trying to piece together bits of information that may or may not be reliable given my current mental state, it was all just there for me to give them. It does everyone a huge favor, most of all you. This planner is a great option as it is durable, has a weekly AND monthly view (very important), each month is tabbed for easy go-to, and has a notebook section in the back.
Make some space in your kitchen...
Draw up your meds for the whole day in advance & make a medication log.
Plan ahead, but also be flexible!
On the note of feeds -
If your kid has an NG or G-tube:
Try to keep extra of everything you need.
Here's one that's not medical: MEAL PREP
Finally, and perhaps most importantly: Remind yourself every day that you've got this, you are doing great, and it's ok to ask for help-
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