Updated: Jun 25
Hudson has seen many, MANY doctors in his 10 months of life. Each appointment we spend a good bit of time going over his history, medications and how he's doing. Because of Hudson's lengthy history and long list of medications it can be hard to remember everything, especially while trying to hold or entertain him. I've seen where some parents have all of their child's medical info in a app or in a notebook, but I didn't know where to begin or what to include so I just started on Microsoft Word. As I thought of things I would add and update as changes came. My goal for this folder was to: A, make appointments easier, B, have all the information someone caring for Hudson may need, and C, to have this down just incase something was to happen to me. Let's be real, us special needs moms (and dads) do so many things that go unseen. It becomes second nature, so having this typed out has given me so much peace.
There are so many ways you can make this folder and please use what will work best for you and your family. Each child's needs are different, but in this blog I'll go over how I completed Hudson's Folder and feel free to make adjustments where you need them.
First, I want to go over the supplies. I spent under $15 at Target for a D-ring binder, page protectors, 8 dividers with pockets and a sharpie. Remember there is no right way to do this, so if you see something you think will work better, go for it!!
Under this tab I included Hudson's full name, DOB and where he was born. I also added my Husband and I's full name, DOB and contact info. There is also a copy of his primary insurance card and medicaid card, front and back.
The History section contains his surgical history, diagnosis list and select records. I say select, because Hudson's medical records are two thousand plus pages... NO JOKE! So I just added things I thought were important and helpful: Shot records, Swallow study, MRI notes, etc. This has really helped me when filling out new patient paper work. They always ask a hundred questions so having this section to refer to has been helpful.
For our LONG list of medications I have listed each one along with the amount and when he gets it. Something that has been super helpful for me during appointments is making a few extra copies of his medication list so when the nurse or doctor ask, "What medications is he on?" I can just hand them the list. This has made it easier on all of us. I've also created a check list so when someone is caring for Hudson they can check off medications as they go. There is also info on his emergency seizure medication along with a step by step diagram on how to administer it. Since Hudson is on so many medications and some need to be compounded, we have to use three different pharmacies. I've added the pharmacy name, address, phone number and which medication comes from each. I also added a medication dosage page which has the exact concentration for each medication.
In this section I have listed out his Doctors, Therapist and Early Intervention Contacts and how to reach them.
Here I break down how to care for Hudson's G-tube, how to replace it, how to clean the suction machine and how to work the feeding pump. I would never leave Hudson with someone who doesn't already know how to do these things, BUT it is nice to have it down as a refresher. I remember the first time we had to change his G-tube; I blanked under pressure so having it step by step is nice for reference.
Therapy, being so beneficial, I added a sheet of exercises as well as how to do them, what they work and the goal for each. Thanks to our amazing speech therapist, we also have a check list. I've printed another copy of each and laminated it. This comes in handy during therapy time so I can refer to the list and check off exercises as we go and add comments with a dry erase marker. This makes it reusable for the next day! I plan to do the same for both his occupational and physical therapies.
I haven't quite decided what the last two dividers will be for, but I'm sure as time goes on I'll find use for them. Again, please remember each child has different needs, so adjust this to what best fits your child and family. Hope this helps you as much as it has me!