Tricks of the trade!

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...

· ...like clear out an entire cabinet or buy a big ass shelf if you can, because if you go home on tube feedings, breathing therapies, oxygen, and/or lots of medications you're going to need the space. When Griffin came home, he had a NG tube and 15 different meds administered via NG tube, breathing treatments, and injections. I had medications, inhalers, nebulizers, insulin needles, alcohol wipes, feeding bags, Duoderm, Tegaderm, feeding tubes, universal remover wipes, skin prep wipes, enfit syringes galore - the list goes on. It was a lot. So, my wonderful husband bought me the pot rack I had been wanting anyways, hung it above our island, and the cabinet that had previously housed all of that became Griffin's cabinet. I also went promptly to the dollar store and bought baskets - like a ton of baskets. I'm sure the cashier thought I was a freak...which I probably am...but I like to be as organized as possible and have a designated place for things. If you're more of an order-it-online-have-it-delivered kind of person (which normally I totally am, I just didn't want to be patient this day) these multi-colored tote bins get great reviews and the different colors help with organization, as well as plastic for easy cleanup. They're great for things like dressing supplies or medications. These collapsible storage cubes are wonderful if you don't need to use them right at the moment. Who doesn't love good storage solutions?! Having a set up where everything has a specific place you can run to each time your kid pulls out his NG tube and you have to hurry and put it back in, or you don't realize you forgot to draw up one of the time-sensitive meds that are due right then when you double-check your med list, is pretty priceless. If you don't have a cabinet that's ok - a dresser, a bookshelf, an old kitchen cart, even just more baskets. Whatever works best for you and makes life a little less stressful is the goal. Just try to keep it all in one place as much as possible for your own sake, it makes life a lot easier I promise. You'll probably mix it up as time goes on as you learn what works best for you, but here are some ideas for you that have worked really well for our family.

Draw up your meds for the whole day in advance & make a medication log.

· We have tried several different ways of doing this and it's taken four months to finally find what works best for us, but we draw up all his meds for a 24-hour time span, so we don't have to worry about it throughout the day. Griffin gets medications at 9:30 AM, 10:30 AM, 2 PM, 5 PM, and 9 PM currently, so I do this at about 10 AM (ish) so his earliest morning meds are already drawn the day before (I'm worthless before coffee and some quiet me time to start my day) and have a span of time that is enough to draw up all his medications without rushing and possibly making an error. I have small baskets that are marked with his medication times, and one that goes into the fridge for the medications that must be kept cold. I also bought mailing labels and write the medication name on them, then put them on the syringe to keep the meds that look similar and/or are similarly dosed all straight. I also have a medication sheet I made and edit as we go and wean things, and I make sure to grab that and check things off as I draw them up. At this point I have everything memorized, but the first rule of health care is to double, and triple check your work. They don't teach you the five rights of medication administration when you go home with a kid like ours, but as I had the benefit of working in healthcare for years before Griffin came along, I already knew them: right medication, right dose, right route, right time, right person (duh on this last one, I know). But the first four are great to practice at home every day, no matter how comfortable you get. Trust me, I've learned the hard way, it's when you get too comfortable or complacent that you forget and/or miss stuff. I also learned after two months of printing his med sheet daily and physically checking them off, then filing away, that's a lot of printer ink and paper, which is expensive. So, get yourself some self-adhesive laminate sheets and a good whiteboard marker, and reuse the one you've got until you have enough changes to make a new one or the one you've got wears out. If there's something you need to note and keep track of (like a medication wean or discontinuation) you can put that in your handy dandy Book of *insert your child's name here*, and keep that record there, as well as black things out with a sharpie on the physical med sheet.

Here is a link to the editable version of the medication list I created for Griffin: https://1drv.ms/w/s!AvVbCULdrjxLgi7r79m_iva4GfyN?e=djIS8Z

Feel free to use this as you please, just download a copy for your own personal computer, and it should allow you to edit. (I kept some things on there just for ideas depending on what you need to keep track of.)

If you just want ideas to go off for your own here are photos of the original, the one I've got going now, and how I draw up and keep straight all his medications in advance.

(If you needed evidence of my inability to do life without coffee - my coworker bought me that crab magnet while on vacation a few years ago! Bahaha!)

Plan ahead, but also be flexible!

· It's great to have our routines that keep us on track, but invariably things come up: doctor’s appointments, therapies, family gatherings, meetings, ect. So, when looking at your calendar make sure you plan for and around those things. If we have a 9 AM doctor's appointment I make sure to adjust how I do his meds in advance, so I've got them done for at least two intervals after we get home (ie his 10 AM and 2 PM meds are all drawn up and done). This way I'm not rushing home and frantically trying to get back on track while getting his daily schedule back on course as best I can. I might also draw them up the night before as well to eliminate something on the to-do list in the morning when we are trying to stay on time and have so much else that has to wait until then to get out the door. I also make sure I've got any possible meds with us that are scheduled for during travel times, his doctor's visit, and maybe even after we should be home just in case. I can't tell you how many times I thought we would be home by his 2 PM medication time when his doctor's visit was scheduled for 12, and between the doctor running behind, the length of the visit is longer than scheduled, or any other variable, we don't get home until closer to 3 and then his meds would be an hour late. It's better to just be prepared than try rushing and stressing about it. If they've got a feeding tube you get the extra advantage of having a backpack, they give you when they give you the pump and all the supplies, and I just throw his meds and feeds all in there for easy access.

(Some of the many backpack options you get when you go home with a feeding tube - and when you've done this three times now haha)

On the note of feeds -

· If your kid eats orally then you probably already bring your can of formula, pre pumped breast milk, baby food, ect with you when you go out. With a kiddo like Griffin who is tube fed and on a feeding regiment, we make his formula 24 hours at a time (it's not good for any longer than that so do not make any more than this). On appointment days or days, we need to be out of the house for any length of time we make his formula early in the morning, then bottle up the appropriate amounts to just grab and go for an easy dump into the feeding bag while we are out. No measuring, no mixing, no mess. I've got a plethora of ice packs and I just stick those in the back pocket behind where you hang the feeding bag with the bag already filled and any bottles we might need for refills, and it keeps everything perfectly cold until it's time to run it. I also stick any medications that must be kept cold in this pouch and depending on how long we are going to be out even a lunchbox with extra icepacks, just to be extra safe.

If your kid has an NG or G-tube:

· Always, always, always carry an emergency kit with you. You never know when your kid is going to decide it's a good time to yank it out, and you don't want to be stuck somewhere unable to leave and stressing about missing meds or meals because you don't have the supplies to replace it. I have a little zip lock baggy that I keep tegaderm, duoderm, extra tape, lubricant, sterile water, syringe, scissors, universal remover, and skin prep wipes in his diaper bag at all times. Luckily, we have not had this incident yet while out so I have not had to use it, but you can be sure with our luck the moment I don't have it on us will be the time Griffin gets handsy and we are up a creek! Also, I never seem to get enough skin prep or universal remover wipes from our medical supply company to last us until the next order comes (insurance limits the amount, of course). So again I turn to or my friend Amazon and do a monthly order on both the Smith & Nephew Remover wipes or Hollister Universal Remover, and Skin Prep wipes.

Try to keep extra of everything you need.

· In the days of Covid I can't stress this enough. Several times I have called to reorder something for Griffin and been told something is on backorder - like NG tubes. Are you kidding me?!?!?! Now, NG tubes are good for a month, and you can wash and reinsert them during the 30 days if you need to clear it, it gets yanked out, or whatever happens. But should something weird happen (like a manufacturer defect where you literally cannot push anything through the tube when it's brand new out of the bag - yes this really did happen to us) you want to make sure you've got extras to fall back on. It might feel like hoarding or overkill, but I promise you, you'll thank yourself later when something weird happens or comes up. Surprisingly, you can actually buy these as well on Amazon too, so if you know the french your child is using, I suppose you could go that route in a pinch, but that just makes me nervous so stick with stocking up if you can.

Here's one that's not medical: MEAL PREP

· It really will save so much stress, time, and trips to your local fast-food joint if you know ahead what you're making. Also, if it is at all available in your area, sign yourself up for Instacart immediately! It's $99 a year for membership (you don't have to pay for this, but it will save you way more than that on the delivery fees if you have it) and let someone else do your shopping. The last place I want to take my kid is Costco for a monthly stock-up trip. Now I don't because some nice person is willing to go for me and drop it off at my door. Between planning meals and then doing Instacart I save myself a ton of stress, frustration, and tears. (FYI you can also get things from other stores like pharmacies two-hour, convenience stores, ect through Instacart)

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-

· This life does not come with instruction manuals (just pamphlets and handouts they give you at the hospital and doctor's office ha!) and we are all just figuring it out and muddling through as we go. This life is hard, and very few people will ever be able to understand what it's like to walk in your shoes making this life at times a very lonely one. But every day you're waking up and doing it all, and that's no small feat. I had the benefit of a background in the medical field before Griffin came along, and I truly stand in awe of those who have never had to do anything like this before their child came into their lives. I get overwhelmed still, and I cannot imagine doing it with no base knowledge and practice. It's a huge and loaded job that most of us did not sign up for. So, on your worst days chant to yourself that you're amazing, you're doing it, and you can keep doing it, ask for help from those who can, and if all else fails, eat a piece of cake (because baked goods always make the world seem a little better and brighter on the bad days - and really every day, actually).

If you are interested in signing up for Instacart: here is a link to sign up. Enter code JESSICAH9E5E721AE to get $10 off your first order!