Confessions from the mind of this sleep deprived mom navigating the world of complex medical needs, deafblindness, and special education. And y'all, it may not always be pretty, but it's real, and it's always for the love of Ivey.
My goal is to advocate for those who are truly handicapped. Ivey falls into the handicap slot under three seperate criteria. She is physically handicapped, mentally handicapped and medically handicapped. I don't know if there is some other criteria that I might be missing, but I think possessing one of those components or any combination of the three pretty much saves one of those parking spaces for a person - with no limitation to the mildness or severity of the 'handicap'. I think seizures are one of those things that you might never know about - but I have made that dead sprint to grab the Diastat left in the car or to get her back to the car - and I promise if that were her only issue - let people glare, because the back of the parking lot is no place to be in those moments.
And I have been the recipient of plenty of glares, and that's okay - from a distance Ivey is pretty deceiving. She is still small, so some days when running into the grocery store I can …
You know sometimes I somehow put myself in some pretty humiliating situations all boiled down to living life with and through Ivey, or at least this little part of my life. Fortunately for Ivey – and unfortunately for the rest of society – I get a tad bit involved and on a soapbox every so often. I've heard it called 'being passionate'.
Our plans for going home have been altered a little today – and that leaves you at my mercy because it will take approximately two or so hours for Ivey's infusion to run – so let's just say I have some time on my hands….
Most of my people know that I get a little 'passionate' about handicap parking spaces. It has become one of my things and if I were in contest running on a platform – we would be talk a lot about those little spaces and who needs them, who assumes they need them and those who are plain ole idiots.
Let's just say hanging around this hospital tugs on me a little.
It was decided that Ivey would remain another night. She has been on and off. She has bounced between play and sleep all day. Her temp is down, no seizure activity today; still fighting an infection – tomorrow she will receive another infusion of an antibiotic and have blood work – At this moment I am begging her to sleep – Yesterday's excitement has finally swept over me. She seems to have a different plan for the moment. We'll see where we are tomorrow-
She had a great night - slept through (with the help of large doses of seizure meds). So far today she has slept the majority of time. During her up times she plays with her favs. I have engineered her a makeshift little room out of her crib (just call me McGuyver). She is happy but tiring easily. And for the record she is missing her Daddy and brothers. She keeps asking (signing) for them..over and over.. Now waiting on the docs to see what happens today.
Look familiar? Today Ivey had a terrible seizure. After approximately a hour and fifteen minutes of non-stop seizing -even after Diastat- the great team at Floyd finally got her under control. They are a pretty amazing group of people. Now Ivey has been admitted over night into Scottish Rite to try and nail things down. Just moved from the ER onto the floor. Feels like a second home. Just when it feels like we have these crazy seizures tamed - wham - they rare up again in full force. Despite that - Ivey has some amazing little angels in her life.....her brothers. Today this one hit mid-afternoon. Ivey's brothers are aged well beyond their years - almost too responsible, grabbing the Diastat, lugging the suction machine, helping pack up the car. Not to mention Ivey's other angels that took the boys, rearranging plans, literally in a moments notice. The one who sat with her in the ER. And the angel that she asks for even when he's not there - her Daddy. We (Ivey a…
So I'll admit that I can sometimes get a little freaked out about Ivey, and it's not just her blindness – it's the combination of all of her 'stuff' that can limit her understanding of her environment.
I seriously doubt that you have thought about it from this angle, but sometimes it's the weird things that get me –
Like this morning. I got up to let Ivey's nurse go home - was in the middle of brushing my teeth – and BAM….. I felt that creepy crawling feeling on the back of my thigh like a bug was crawling up my leg.
Chills went down my spine and I commenced to jumping and swatting - desperately looking for a mammoth spider…. and nothing – just my shirt tickling my leg.
Wednesday Ivey had her IVIg infusion here at the house. This makes for the second infusion ran by an infusion nurse here. It was nice not driving to Emory or Scottish – almost. The nurses running the infusions are doing their best – but Ivey is a hard stick and it takes several tries, and we are in a predicament. Don't stick again – don't get infusion – feel crummy and plagued by sinus infections and seizures….or go for it again; or more than again if necessary – and Ivey feels better. So for the second infusion in a row it took the nurse, me and Taylor to hold Ivey down for her IV. This is definitely not something I can imagine doing every month. Which this leaves me to wonder, why didn't Ivey get my monster veins? Little tiny rollers is all she has, and one that gushes, but doesn't cooperate with the needle.
BUT… this time no bad side effects! We did a regime of medications before and after the infusion and I think it's the right combination. Woo hoo. And……48 h…