Monday, February 15, 2010

Way too much info.

I would like to thank my parents who graciously helped every one of our nurses, our doctor’s, our visitors as well as my family; they bought us a bathroom spray. I know some people may not want to hear this, so if I was you I would skip down to paragraph #4; but it is a real issue and must not be ignored. I have yet to meet one person on this earth that does not go #2; if you know of one I must meet him/her. It goes by many names such as Dropping a deuce, going boom boom, Dropping the kids off at the pool, Making a black eel and laying bricks, I could go on and on but I think you get the point.
Our only source of good food, and my IBS

I have avoided doing the dirty deed as much as possible in our room, but I am only a man, and my family was their when my IBS refused to allow me to run to another room. As my luck would have it the nurse entered the room as I was exiting the bathroom, I was behind her and could only make an expression of horror and embarrassment as I screamed silently. This caused my entire family to forcibly hold in their laughter, which resulted in many red faces and odd spurts of air escaping. I shut the door as soon as possible, to no avail; it had been released, for all in the room to take part in.

The next day (Valentines) my sweet mother came into the room and handed me a bag filled with candy for the boys, a stick of deodorant for me (I couldn't find mine for a day) and the holiest of holies for a bathroom, Bathroom spray. It has been used numerous times since then, by me and Xander, who prides himself on having to use it, I am sure the nurses of St. Mary's hospital are forever indebted to my mother, and Glade. I know way to much info.

Now onto what you really want to hear, Xander is doing great, he is trying to walk by himself, causing me to have numerous heart attacks (because he is so wobbly), and making me feel very uneasy. I am just really worried that he will fall and hit his head, which would be horrific to say the least. He is healing well, and his spirits are about as good as they can be for being stuck in a hospital for 2 weeks, yeah it's been two weeks already. We should be going home today, instead we are re-testing, ahhh such is life. We have been trying to find other things to do with Xander besides watch TV, but our options are limited, so any suggestions would be great, keep in mind his right arm mobility is limited, and his right hand is still extremely weak, making him very frustrated when he cannot do things. We are trying to involve his right hand in everything we do, but like the therapist tell us, you have to make it fun, and it's okay for him to use his left hand when he gets really frustrated.
X Knocked out after his 2nd Therapy session of the day

The Twinkies are doing a lot better now that they get to see Mommy and Daddy everyday (we are switching nights with them), and it helps having Nana Judi here too. The Twinkies are mastering their manipulating powers at the RMH, I was able to see this first hand one day, I'll explain. I walked into the RMH and they were handed cookies by the front desk girls, they grabbed them nonchalantly and sheepishly smiled as they swooned over them. After I threw up in my mouth, I headed upstairs to feed them lunch; they were already eating their cookies and not wanting their lunch, so they cried when I took the cookies away. An older gentleman, on staff, came up to me and started telling me how hard it is on these boys, with all of the changes going on, the boys must have sensed he was advocating for them and continued to cry. I am not so easily swayed, but can play this game as well, I picked Israel up and held him, explaining to the man I understood, as I stroked my sons hair. As soon as he got on the elevator I set him down, they had stopped crying, and I explained to them if they ever wanted to eat another cookie again, they had to finish their sandwiches. They gave me a "I didn't know you were a 10th degree master of trickery" look, and tried to pout. I walked to the trashcan, cookies in hand, and explained to them I was serious; they could tell so they quit crying and took large bites.
Don't let these faces fool you (and yes this is an older photo)

The MEG scan has been brought up and is still an option; I am not sure where we are going to go with that. There is so much to explain, and frankly I do not feel like repeating it all, Sarah and I have been going over this all day. Here is what I will tell you about it, they do not have it here, but it is in the Twin Cities Hospital, they said the best place to go is a hospital in Alabama; they claim they have the most accurate translations. Insurance companies are a pain in the @ss when dealing with the MEG, and can take 6 months or more before approving it; we do not have 6 months. Six months is way too far out, that brings us into the new school year, and then it takes another month or so for them to translate it. Xander would have a seizure every 15-30 minutes without meds. and that would cause serious brain issues, his meds are able to hold them back a bit, but his body rips through the meds, causing the Dr.'s to figure out new "cocktails" for him. X has no idea how serious his seizures have become, but 6 months could hurt him so much more, and cause new "Seizure Highways" to develop. So that is what we are looking at, in a very tiny nutshell.

A good piece of news in regards to all of this re-testing, we know Dilantin is able to make him not seize for a period of time, so we will be able to get a Spect-scan done. Here is a link to what Wiki says, Mayo has a link to it as well, but I think this one is easier to read We were not able to have this test completed the first time, since he was having so many seizures, and none of the meds were stopping it, so hopefully this will show them if they were just not aggressive enough.
X's therapy artwork

We are in a new room again, although it is not really a new room, it is actually the first room we ever stayed at in this hospital, it feels weird. Keep X in your prayers this week, specifically the next 3 days, he really hates these test, and his sensitive skin blisters with the glue they attach the electrodes with. We love you all, and thank you for all of your support.


  1. Ha! Glad you got some spray. Life is abysmal without it!

  2. Hey have you guys tried trouble? May be kind of difficult if X is struggling with the right hand, but provides about 15 minutes of distraction.