For the Love of Ivey

Hi all. I guess you are wondering how Ivey did during her sleep study? Based on my experience with Ivey Monday night, the trach would come out when pigs fly. She just wasn't herself. It seems she has a cold. The congestion prevented her from breathing through her nose well. Every few minutes she would shoot her cap across the room if she coughed. That cap can be lethal. She could not get comfortable. She could not suck her thumb. In a nutshell, she could not sleep. I stood over her crib for the duration of the night (9p-6a) semi crying, semi hallucinating from exhaustion, semi delirious from her coughing and just plain ole frustrated. I stood pleading that things would improve. Finally around 4 am I sat down on the bed and I think I dozed off while sitting up for about 45 minutes. Then at 6am the nurse buzzed me on the intercom to let me know it was finally over and we could go home as soon as Ivey was unhooked from all of the sensors. That was that. I did speak to the nurse practi...

It is 11:27pm and I am sitting here watching Ivey sleep. I am watching a monitor with numbers that I have no idea what they mean. Matt would frown if he saw the time and knew I was not trying to sleep too. Ivey and I made it down here to Scottish Rite tonight by 8:00 pm and only by the Grace of God did we get here. This morning Ivey woke up with a nasty little cough and some congestion. Both to which make me extremely nervous about this sleep study and the outcome. Once we got here tonight I realized that the trach that was changed out this morning was missing a vital piece to it. So, it took an hour to find a trach here in the hospital that could be switched out again just for tonight. Finally, they rounded up a cuffed trach, which Ivey does not wear, but can for the night. Unfortunately I will have to change it out again once we get home. Just so you know I should always have a spare trach with me. I managed to make it here with everything but the kitchen sink and a spare trach. Not ...

Today is the specialist of days. Today she turned two and at 5:30am her daddy and I were sing Happy Birthday! I will put all Birthday messages in her book, so even if you have never left her a message, now is the time! H.a.p.p.y. .B.i.r.t.h.d.a.y. .t.o. .y.a.,. .h.a.p.p.y. .b.i.r.r.r.r.t.h.d.a.y.!!!!

So today we look to her future, remembering her past, grateful to have her today.

Yesterday Ivey waved bye-bye for the first time. She did it again today as my dad was leaving. Coincidence? I don't think so. The thing is I have been adamantly trying to teach her to hold up two fingers as a little surprise for everyone for her second birthday, which is this Friday. Not so much. She could absolutely careless about 'counting' on her fingers. This is just another stance Ivey is taking to remind her momma that she will do what she wants, when she wants, and how she wants!! That little girl has spunk. Ivey has a couple of appointments coming up at the end of the week. So, here is the plan for the remainder of the week. First we will see her neurologist on Thursday and hopefully get his blessing that all things are leveled off in that little brain of hers. Friday morning we will wake up to sing happy birthday to the birthday girl. Then we will hop in the car and head to the trach clinic, which by the way, we hope to be her last trach clinic! All things going w...

The week so far has been a little on the wild side, but at least it has not been boring. However, I think I would like to find some boredom for awhile. Basically, Ivey had another seizure on Monday night. This time is was much worse than any I have ever seen her have thus far. Luckily Matt was home for this one. So before I go any further I want to say a special thank you to everyone who helped us Monday night. That special group includes grandparents, a neighbor, a Godmother, a friend and the ER staffs at both Floyd and Scottish Rite. What we do without all of You? We did get Ivey to the ER at Floyd after I administered her Diastat which had absolutely no affect. Fifty minutes later with a one time attempt at an IV and two medications her seizure finally subsided. The rest of the details I just don't want to relive right now. After she was stabilized we transferred her to Scottish Rite, where we spent the night. The neurologist checked in on her frequently and decided to make medi...

Yesterday- was Circus Day at preschool. Here was the scene for the well one in our house. A circus horse - of course!! The Big Slide Walker and his best friend Emma - I never could get them on the down jump. THE SCENE AT HOME -

Maybe I was meant to be a hermit or maybe I should just live on a deserted island or somewhere in the Arctic. After all, that’s what it has been like for the past three weeks, oh, maybe it’s four. Who’s counting? One thing is for sure, I missed my calling. Life keeps insisting that maybe, just maybe, I should have invested my brain cells somewhere in the medical field while I was in college. I guess I fell short considering I majored in Biology, which is somewhat in the right vicinity, but let’s face it – that degree isn’t really helping me much these days. Anyway, I have been pretty much in solitude – scratch that – quarantined for the past few weeks. It all started with Ivey’s seizures, then Walker, in the midst of Ivey, decided to come down with four days of a 103 fever. That I believe was most likely the flu or some version of it since he had the flu vaccine. (Some good that did) Ivey had more seizures. I am hesitant to tell you that now Knox is home with strep. So, yesterday while...

I mentioned in the last post that Ivey's seizures have abruptly decided to show themselves frequently in the past three weeks. Since March 13th she has had at least 10 seizures that we have observed. She is having a combination of types of seizures, predominately she is having myoclonic seizures, but most likely having grand mal seizures too. We still have not pin pointed specific warning signs signaling that she might seize. Some days she is in a playful mood and then suddenly begins to seize. Other times Ivey might be sleepy. They happen morning, noon or night. They do tend to follow a similar pattern, myoclonic, where her muscles twitch discretely. Other times her arms and legs thrash violently in a pulsing fashion, as does the muscles in her face. Her body becomes very tense. She is incoherent and non-responsive. Consistently she looses her color and turns a 'dusky' shade, drools and urinates. Unfortunately, Ivey also tends to have long seizures. On average they range f...