Hi guys...and gals.
I know it has been way too long since you have heard from me, and I know how rude that is considering the countless acts of kindness you all have showered us with...and the many prayers that you have said for our little boy etc.
Suffice to say...I suck.
I just hope that some of you have stayed updated via Kevin. For those who have not, I'm truly sorry.
Things have just been so crazy...obviously toting Drake to hospitals/doctors in 3 cities can be taxing, but "the rest of our life" also has been nuts. All of the boys (including Kevin) have been "deathly ill" at least once in the past few months, with Drake actually landing BACK in the hospital! My grandparents in Cincinnati, who have lived in the same home for 60 years, arbitrarilly decided to move to an assisted living situation...and needed packed up, moved and possesions sold all in a matter of about 6 weeks. My brother and family decided to make their first trip back from Idaho for Christmas in about 5 years...making it necessary for me to "play hostess" in the middle of all of this. Let me tell you how tough it is to get a home together that has been a bachelor pad for the better portion of the past several months (on account of Drake and I being in hospitals) AND also had the added splendor of entirely too many boxes and furniture that I rescued from my grandparents trash pile. Needless to say, just making the house presentable, much less preparing for the holiday was a full time job in and of itself....plus, add the fact that Kevin has been gone to other states for like 3 weeks on and off....
There are lots of other things that have kept me from all of you, but right now they just sound like excuses, so I'll spare you the eye strain.
As for Drake...well, things are about the same. Occasionally we think they are better, and then we realize that we are likely just used to his oddities at this point. He still doesn't sleep well...with the theory being that pain or discomfort wakes him up, since the sleep study did not reveal any "organic" problems (like apnea etc). He still has the odd dents and ridges in his head and forehead, but the mop of hair he has grown masks them a bit...wish we could promise he'd have hair his whole life!
His eyes are still expressionless...with the right eyebrow moving a little, the left not at all and the lids super droopy still. We patiently await some sudden regeneration of the damaged nerves, but it is looking more and more like he'll be having baby plastic surgery ultimately. His motor skills appear to be improving some, but whether that is on account of "getting better" or just getting older is tough to distinguish. His overall grumpiness is much better, though he still has some really rough days. His pediatrician attributes that to him becoming "used to" whatever is bothering him, as there really are no physical changes or changes in his vitals etc. to suggest there has been a positive permanent change.
He's such a neat kid though...we often wonder if we would get as big of kick out of him if he were 100% "well". The sort of dead pan face coupled with the fact he can barely hear creates some hysterical moments when he is getting in trouble. Imagine hollerin' at a kid who just looks at you like you are crazy...as he spreads cheetos all over the kitchen floor. He's been through so much that nothing really phases him...so any attempt at stopping him from doing something is sort of in vain. He simply seems to look at our reprimands and attempts to intercept the behavior as something along the lines of an obstacle. It doesn't stop him, our involvement merely inconveniences him momentarily. Again, whether it is his hearing, his expression or just whatever is going on in his head, it makes for the funniest most unique kid you could imagine. You could just sit and watch him "do his thing" for hours and be entertained. He's so cool.
On the horizon for Drake...
In mid January, he will be having a procedure to test his swallowing mechanism. There is some "talk" that the head issue might have mildly affected some of his involuntary muscle responses and his swallowiing might be MILDLY affected, causing him to aspirate (inhale food/spit etc.) This theory would account for him not being able to shake the stupid virus he picked up during surgery.
He also will be seeing a heart doctor. His blood pressure continues to be high always...whether he is sleeping, drugged up or pissed off. He also is having some odd heart rate issues, where it drops too low when he is "calm" and goes way to high when he is ticked off. The docs are still holding out hope that it is pain/discomfort/stress causing the blood pressure/heart rate issues, but considering the fact that it has not resolved, we now have to investigate to be sure there is not more to it than that AND get a plan to treat it even if it is just discomfort/stress, as with the blood pressure issues in Kev's family, he doesn't need to start his life off with this overload.
Then, at the end of February, he'll have surgery on his ears. It is still somewhat of a mystery what is going on with them, as the hearing loss and fluid etc. did not come from an infection. So, the surgery is scheduled in hopes that will resolve the issues, particularly the hearing. If it does not, we will go from there. He has the neatest doctor in the world for that. This guy is out of Cincinnati and he is a very specialized ear doctor...and he is amazing. I wish he could take care of all of Drake's other issues....I have so much confidence in him.
Once all of that gets taken care of, we will head back to Columbus for the plan of attack for his head. We will meet with the neurosurgeon again and the craniofacial surgeon and establish how we will go about getting this child some relief. We have chosen to hold off on this until the other things get resolved as we feel that it would not make sence to possibly start slicing and dicing him again with known ear issues, possible swallowing issues and untreated high blood pressure. His "head docs" agreed that made the most sense....since this is being looked at sort of like a traumatic brain injury and therefore it takes a ton of time to sort it all out and establish what needs to be/can be fixed etc.
So...in the meantime.,...
We were supposed to get away and go to Tulsa for the shootout, then do some family touristy stuff and then to the Chili Bowl, but Drake was not up to snuff enough to be gone that long. So, now the plan is that if he continues to do as well as he is doing right now, we will all be going to the Chili Bowl.
That being said, please come see us. I want to see any or all of you desperately. I will say that I am terribly embarrased by the generosity many of you have shown us and further embarrased by my lack of reciprocation or propper thanks, that I will likely be very uncomfortable, BUT none the less, I want you all to meet the little boy you have helped so much. Also, Nicholas' birthday is Jan 5th and Drake's is Jan 27th, so we were thinking of having a big ol' cake in the pits one day that week to celebrate. Not sure WHEN that will be, but swing by and see us, and maybe you'll get some cake for your efforts. LoL
Thank you all so much, we are so grateful. Special thanks to DARF (Dayton Auto Racing Fanclub) for their Christmas gift...wow, what a surprise...what a classy organization! Also thanks to one of the kindest human beings on the planet, Dave Merritt, for the photos...the box was opened Christmas morning and not only was Nicholas thrilled, but my entire family were all astounded by your talent. Further thanks to Bryan Clauson for the packages for Nicholas....to say he was proud to be sportin' the duds is an understatement! Thanks also, once again, to all who helped us out during our journey, I promise you, beyond a shadow of a doubt, we would not have been able to "make it", particularly in terms of Christmas etc., without your generosity. Nicholas has no idea how many Santas there really are..
Love you all...
Lauren & the boys
PS: I have not checked my email in over a month and have not been on this board in longer than that. So...that being said, I have no idea what is going on in the racing world, or with any of you. I apologize, and do promise that AT SOME POINT, I will get caught up...
