Friday, March 27, 2009

Day Sixteen...

Not that I am counting or anything...LOL. But it has been sixteen days for me here at TIRR. A wonderful, inspiring, and encouraging sixteen the same time it has been exhausting, tiring (in a good way), and a lot of hard work (but who can't use someone pushing them to their limits all day long? is good for the soul :).

Those of you who have children or who have cared for a baby animal that needs care throughout the night (and you have to wake up several times a night) can empathize with my exhaustion and tired feelings, but also at the same time you can also understand the feeling of loving something/someone so much other than yourself(as Christ has done)...that the tiredness and exhaustion doesn’t really matter because the sacrifice was so worth it! That is pretty much where I stand at the end of my day when I lay down to go to sleep every night. Even after I finish my therapies at the end of my day...I try my best to work on "my homework" that has been assigned to me by my therapists. I figure...the harder I work...the faster I will get out of I can be home with Katie...Oh how I miss her (as I sit here just typing and thinking about her...tears stream down my face)! But at the end of the day...I have to tell myself the sacrifice NOW will pay off for her, Aaron, and me later. Just as our Father God sacrificed His son for us...we have to look at how that has paid off for us...all well worth the sacrifice.

So let me update you...where we are at...On Wednesday they had what they call "rounds," basically what happens is that the group of therapists, doctors, the case manager assigned to me, and my social worker…all get together on their own and talk about my progress and what has been going on with me at TIRR (at these moments when I begin to think about all these people talking about me and the progress I have made…I have to think how weird it is being on the clientele end of the spectrum…as opposed to being the clinician). Oh how I can now empathize with the parents of the families that I work with in the school system. Okay…so now back to “the rounds…” The doctor, neuropsychologist, and social worker came by Wednesday evening to discuss with Aaron and me their thoughts and decisions. All great news…thank God for perfecting all that concerns me [Psalms 138:8] They decided to move my discharge date up to April 8th, and are still looking at sending me to the post acute therapy place that I mentioned in my last blog (it is called Mentis……but the great part of that is that instead (like I mentioned in my last blog) of having me stay the night in the facility…they would allow me to stay at home with Aaron and Katie, which I am ecstatic about! I knew God would work out things just perfectly…He always does. The only catch to that is that someone would have to drive me (thank God that my in-laws (my father-in-law arrived yesterday) are here and can drive me…by the way if I haven’t mentioned my mother-in law has been so wonderful and has taken care of both Katie and me before surgery and Katie after my surgery)…at least at first…five days a week to the facility for treatment during the day….later as I progress in my therapies…they will cut back the amount of days I have to go during the week. It looks like I will be at “they” (God always has His own plans) say until the end of June…maybe into the beginning of July, but like I said earlier…it all depends on my progress; we just have to take things day by day.

By the way…I know I mentioned last time that I was walking with assistance and having to be helped while I go to the bathroom. Well a lot can happen in six days, at least when God has anything to do with it, yesterday I was cleared to use the bathroom on my own…praise God for that…now I don’t have to wait for someone to come and take me to the bathroom…I’m sure we all can appreciate that…especially if it is first thing in the morning and you really have to go and no one comes to help for twenty-five minutes and later during the day for thirty minutes (not that I have experienced that or something…LOL…and then you make a decision to go to the bathroom on your own and decide that it IS worth getting your wrist slapped by your therapists later because you are not cleared to be on your own in the bathroom). But I want it known that I made sure that I was safe and tried to remember to use all the techniques and strategies that my therapists have shown me.

I also am able to walk a little on my own (without the use of devices)…not that I am quite walking where I used to be…because I still can’t move my ankle on my left foot (a continued prayer request)…which does hinder walking “normally”…whatever “normal” looks like. So basically I can walk short distances…of course at this point it is always a good idea to have someone close to me, for safety reasons, because I am still working on staying balanced. My balance has improved tremendously since I have gotten to rehab, but I am not quite 100%. Also when I begin to get physically tired…like when any of us gets tired…we don’t perform as well as if we were well rested…I begin to get a little clumsy and not as steady in my walking. Yesterday, we worked on walking up and down stairs…that was quite a challenge…moving my left foot in a backwards motion at this point is very difficult…most of the time…the therapist has to move my foot for me…and even though in my head I’m telling it to move…it still will not, but the great part about the therapists here is that when they move your body part that doesn’t want to move on its own…they still encourage you by saying “good job” …because they know that you are trying…or at least that I am trying and at this point I have no control over that (although that was how I began moving both my arm and leg…by telling it in my head to move and later the movement came…my brain just had to re-route itself…like it will with my ankle and my toes…whenever they decide they want to wiggle again...which will be soon in Jesus Name!)
My neurosurgeon (Dr. Youssef Comair) and his nurse practitioner (Shirley) called and spoke with me Wednesday...they are both so sweet...(and if you ever need to have brain surgery...these are the best of the best there is out there) Dr. Comair asked how I was progressing in my therapies…I shared with him all the wonderful news…he seemed pleased to hear about my foot moving and me walking. He asked when my discharge date was and at that point I didn’t know it was the 8th of April, but Aaron had spoken with Shirley a few days earlier and she mentioned that Dr. Comair wanted to see me within the next couple of weeks. Aaron made an appointment for Monday April 13th. They want to perform a follow-up MRI and want me to meet with a neuro-oncologist…which at one point…it was mentioned that I might need to get oral chemo-therapy…I supposed it all depended upon the pathology report of what my brain tumor truly consisted of…by the way…I don’t think I updated what type of tumor they actually figured out it was…it wasn’t the tumor they originally thought. It is actually called an oligodendroglioma, grade 2…now that is a mouthful. At our appointment with the neurosurgeon, we will find out what the make-up of the actual tumor is. The best way I really know how to explain all this tumor business (which I am just now understanding…so if you don’t understand…don’t feel alone in all of this J)…think of a car...maybe a Mercedes-Benz (this represents the tumor)…there are different classes (styles) of Mercedes…S, C, and E (this represents the grades of tumors)…then you come to the specialized features of the vehicle (this represents the make-up (pathology) of the tumor). I hope that helps as a visual to understand what we will find out at our appointment.

Okay well I need to get dressed for the day…so I must say good-bye for the moment. I will talk to you all later.

I love you all. Thank you all for your support, prayers, love, and encouragement!

P.S. A small prayer request...Aaron and I are going to try and get a day pass to be able to go to our Grand opening service to our new church ( our service is April 5th and I am being discharged April 8th we'll have to see if they allow us to leave for the day.


  1. We love you guys and are continuing to pray for you. We are expecting greater things than you even imagined to come out of this situation. It was such a blessing seeing you last week and enjoyed being with you so much...Please stay in touch. Val and Wes

  2. Hi Sister

    Im glad all is going well.Just stopped in to read your most recent entry.. check on your progress. I know you got baby b-day this weekend.. give her big hugs from her auntie i hope to meet her one day .. Live blessed . i will keep checking in.

    Maribel Pina Ramirez