Praise God for great news. From what the neurosurgeon said and could tell from the MRI, there was no re-growth of cancerous cells. He does, however, want us to go see a neuro-oncologist…seemingly more so for preventative measures. How he explained the situation to us was that when they resect a tumor there can be residual cells around the tumor that can’t all be removed (which can be cancerous).
Think about it in this way…if you have two different colors (pink and blue lumps) of sand and you dump the pink one on top of the blue one, you can probably remove the majority of the pink color from the blue one, but you may still have some granules of pink sand in the blue one after removing the mass of the pink lump. Just because it would be too difficult to pick out all of the pink granules. That’s kinda how it works with a tumor and brain cells.
Ultimately he told us we have three options: do nothing and get an MRI in three months to see if there has been any re-growth of cancerous cells, have oral chemotherapy, or have chemo and radiation. Dr. Comair, our neurosurgeon said he would call the neuro-oncologist tomorrow to talk with him about his opinion and then we are to go see the neuro-oncologist sometime within the next week or so.
In the end…God has the say so. Yes he gives us wisdom, doctors, and discernment to make the right choices for ourselves, but ultimately He has the last word.
So since patience is a virtue we must all possess…Aaron and I will wait patiently for the next appointment. We Love you all. Thank you so much for your continued love and support. We couldn’t be where we are today if it hadn’t been for you!
Monday, April 27, 2009
Thursday, April 23, 2009
Moving Forward...
4/23/09
You need to persevere so that when you have done the will of God, you will receive what He has promised. –Hebrews 10:36
These words have been such an anchor for me these past few weeks . A friend of mine sent this scripture to me and it has really helped me continue to push through and continue to move forward.
I’ll be real honest here and say, these past few weeks have been difficult for me emotionally and somewhat physically. I arrived home from TIRR on April 16th. I am so happy to be home in my own bed (without any interruptions in the middle of the night from nurses or other hospital staff) and be home so I can be a mommy to Katie and a wife to Aaron. I am ready for our life to move forward. I really have to just keep telling myself that I have to be grateful where I am at in life because so many others have it harder than us. I just think about some of the families that have loved ones that have been in rehab for several months...I know that God just gives them the grace to go through their situations. And I just thank God that I have been so blessed to have my in-laws here to help with Katie and the affairs of our household. For if it weren't for them...I don't know where we would have been.
I have to truly apologize for not writing on our blog these past couple of weeks...I have started writing a few times...but I never finished (the perfectionistic part of me coming out...I just wanted my words to just be so perfect that I never got around to finishing what I had started...so tonight I finally just said...I needed to just write, with no if, ands, or buts about it!). Thank you for being patient with me.
Many things have happened since I last wrote...lets see if I can remember all that has happened.
Before we left TIRR on April 16th we were able to leave on a pass for Easter. We had a great time at church and loved being at home with Katie and my in-laws.
Later the next week I was discharged from TIRR (April 16th) and Tuesday (April 21st) I had an appointment with Mentis (the post acute therapy place). I was evaluated for OT, PT, speech and to see what groups that they felt may be beneficial to me.
Today (Thursday April 23rd), they gave me my schedule for my therapies for this next week. The OT, PT, and speech all said really positive comments about how well I was doing…given that I only had surgery such a short time ago. OT and speech both mentioned that I would probably only be with them for a pretty short period of time because I was doing so well in those areas. I still have some strengthening to do in PT for my left leg…I am continuing to not be able to move my left foot from side to side and upwards. Although the good thing is that she feels that there is a flicker of movement in my ankle…which just means that it is only with time that I should regain my movement and strength. So in the meantime…continue to pray for my foot, for strength, and for endurance. Soon my in-laws will be leaving and I will be home with Katie during the day. Even though she is walking now (which makes it much easier on me). She still requires for us to take her up and down the stairs at some point. When I have to be at the house by myself with her…we will modify things to help limit having to go up and down the stairs during the day (e.g. keeping her play yard downstairs for her to nap in, etc).
I had my MRI this past Friday (April 17th) and we will know our results on Monday (27th). Yes, our appt. was rescheduled again. This appointment basically will let us know what our next step in our process will be (e.g. will I have to have chemotherapy, or just follow-up MRI’s to make sure that I continue to be tumor free!, etc). Please continue to pray that the MRI shows no signs of re-growth of cancerous cells.
You need to persevere so that when you have done the will of God, you will receive what He has promised. –Hebrews 10:36
These words have been such an anchor for me these past few weeks . A friend of mine sent this scripture to me and it has really helped me continue to push through and continue to move forward.
I’ll be real honest here and say, these past few weeks have been difficult for me emotionally and somewhat physically. I arrived home from TIRR on April 16th. I am so happy to be home in my own bed (without any interruptions in the middle of the night from nurses or other hospital staff) and be home so I can be a mommy to Katie and a wife to Aaron. I am ready for our life to move forward. I really have to just keep telling myself that I have to be grateful where I am at in life because so many others have it harder than us. I just think about some of the families that have loved ones that have been in rehab for several months...I know that God just gives them the grace to go through their situations. And I just thank God that I have been so blessed to have my in-laws here to help with Katie and the affairs of our household. For if it weren't for them...I don't know where we would have been.
I have to truly apologize for not writing on our blog these past couple of weeks...I have started writing a few times...but I never finished (the perfectionistic part of me coming out...I just wanted my words to just be so perfect that I never got around to finishing what I had started...so tonight I finally just said...I needed to just write, with no if, ands, or buts about it!). Thank you for being patient with me.
Many things have happened since I last wrote...lets see if I can remember all that has happened.
Before we left TIRR on April 16th we were able to leave on a pass for Easter. We had a great time at church and loved being at home with Katie and my in-laws.
Later the next week I was discharged from TIRR (April 16th) and Tuesday (April 21st) I had an appointment with Mentis (the post acute therapy place). I was evaluated for OT, PT, speech and to see what groups that they felt may be beneficial to me.
Today (Thursday April 23rd), they gave me my schedule for my therapies for this next week. The OT, PT, and speech all said really positive comments about how well I was doing…given that I only had surgery such a short time ago. OT and speech both mentioned that I would probably only be with them for a pretty short period of time because I was doing so well in those areas. I still have some strengthening to do in PT for my left leg…I am continuing to not be able to move my left foot from side to side and upwards. Although the good thing is that she feels that there is a flicker of movement in my ankle…which just means that it is only with time that I should regain my movement and strength. So in the meantime…continue to pray for my foot, for strength, and for endurance. Soon my in-laws will be leaving and I will be home with Katie during the day. Even though she is walking now (which makes it much easier on me). She still requires for us to take her up and down the stairs at some point. When I have to be at the house by myself with her…we will modify things to help limit having to go up and down the stairs during the day (e.g. keeping her play yard downstairs for her to nap in, etc).
I had my MRI this past Friday (April 17th) and we will know our results on Monday (27th). Yes, our appt. was rescheduled again. This appointment basically will let us know what our next step in our process will be (e.g. will I have to have chemotherapy, or just follow-up MRI’s to make sure that I continue to be tumor free!, etc). Please continue to pray that the MRI shows no signs of re-growth of cancerous cells.
Thursday, April 9, 2009
A Praise Report...
Thanks to all who prayed for my roommate, Kristin. The family received a wonderful praise report. Her CT scans came back negative (which is a good thing). The doctors reported that all was well, as far as neurologically and that her CT scan was better than the last one! Thank God for His grace and mercy.
Prayer Request
Allright prayer warriors...the battle is on...please pray for my roommate...who right now (12:45 p.m.) as I type this is being taken to St. Luke's for a CT scan due to some concerning neurological signs. Pray that all goes well and that the CT scan shows no problems.
Thanks for reading this blog and praying for her!
Thanks for reading this blog and praying for her!
Monday, April 6, 2009
Wednesday was “rounds” day (On the previous blog I explained what “rounds” day encompassed). Decisions were made and we are back to our April 16th discharge date…I guess they loved me so much they just wanted to keep me longer…LOL J …even though I wish in my head I would be able to leave on the 8th…in the bigger picture and in my heart I know that is what is best and God has given me peace in my spirit about leaving a little later (on the 16th)…He is always faithful and knows what is best. Last week when they had rounds they went back and forth between the 8th and the 16th and basically they told me the wrong discharge date. Both my physical and occupational therapist asked this past week about my discharge date and I said the 8th and they both thought they had decided the 16th. Anyhow, it was then they we figured out that they had given me the wrong date. So I had a few days to prepare my heart to hear ultimately that I would be leaving a week later (it may not seem like a big deal, but when you have your heart set on something…it can be disappointing when you don’t get what you expected.) I know we can all relate to that. And to be honest, I struggled with that for a little while…and God reminded me (as He always does)…I have a purpose for you being here. That stopped me in my tracks quick. LOL.
I am still expected to leave here and go to the post acute therapy place ( Mentis) and I will still just be there during the day and at home in the evenings. J They mentioned that I was still making great progress in therapy. They have me back in my Pool Therapy group and my PHOENIX group, which I was in the week before last, ( PHOENIX is a group focused on providing me the opportunity to use my cognitive and physical skills which will help me be more independent and prepare me for my discharge when I leave TIRR…so when I go home I can be prepared for the challenges that I may face (e.g. what I need to do to get my driver’s license reinstated and getting back to everyday routines, like cooking and cleaning…practical things).
The next on the agenda was our day pass for Palm Sunday. It was approved! Yay! Thanks to those who prayed for us about that. I am so excited (as I smile from ear to ear). We also talked about medication issues…I won’t really bore you with that.
Lastly we talked about our follow-up appointment with our neurosurgeon. We rescheduled our appointment due to my discharge date changing. On April 20th at 2:30 p.m. we have our appointment with Dr. Comair. I can’t wait to hear what they have to say! We have a follow-up MRI on April 17th at 9 a.m. Please pray that we have a good report and that they don’t find any of the tumor coming back!
Last Saturday was Katie’s birthday party. We began the party at the park near our house, but it was so windy and a little chilly too (at least for us Texans…LOL), that we had to move the party to our house in the front yard. Aaron and I were a little disappointed that we couldn’t have the party at the park…like I said earlier when you have a certain expectation and things don’t necessarily go that way…disappointments happen. I suppose that is just life…God had better plans though (but when doesn’t He?...LOL). We ended up having the party in our front yard, which worked out perfectly…all the wind was blocked by the surrounding homes and our vehicles; therefore, it wasn’t too cold, it was sunny and beautiful outside and the setting with everyone in our front yard made the party very intimate…it was just perfect for Katie’s first birthday!
My roommate left on April 1st to another facility…I wish she had longer here at TIRR. I think that she could have made so much progress; even though she made lots of progress while she was here. God has been so gracious to us…Mary was a wonderful roommate. On Friday, April 3rd, I moved to another room, and received another wonderful roommate…with a strong Christian family. Oh how God is so good to us! He is ever so faithful. My new roommate is Kristin. Please pray for her full recovery here is a little excerpt from her blog about her story:
Kristin is currently at TIRR Memorial Hermann Hospital in Houston. She's been diagnosed with AVM- Arteriovenous Malformation, a congenital defect. Kristin is a freshman at Texas A&M University. Her current major is Biology, but she's planning to switch to nursing during her next semester. She just had a great Christmas break with her family in Houston, including a trip to Orlando Florida. In College Station on Monday night, January 19th, after spending the day with her boyfriend Jeremy, Kristin complained of a headache and dizzyness. Then her speech became slurred. Jeremy took her immediately to the ER where she became unconscious and underwent a CAT scan and later an MRI which revealed the AVM and an aneurism which caused bleeding in her brain. On Tuesday night she was transported by helicopter to Houston.
Kristin has been here at TIRR for about 2 weeks and because of insurance reasons can only stay only for 2 more weeks…they will be having a fundraiser for her and her family. Please pray for God’s financial provisions for them. Here is the fundraiser information…Saturday, May 2 is Kristin's fundraiser event at Cypress Christian School. If you would like more information, or want to donate or help in any way, please visit http://francisfund.com. Please pray about their situation.
I am still expected to leave here and go to the post acute therapy place ( Mentis) and I will still just be there during the day and at home in the evenings. J They mentioned that I was still making great progress in therapy. They have me back in my Pool Therapy group and my PHOENIX group, which I was in the week before last, ( PHOENIX is a group focused on providing me the opportunity to use my cognitive and physical skills which will help me be more independent and prepare me for my discharge when I leave TIRR…so when I go home I can be prepared for the challenges that I may face (e.g. what I need to do to get my driver’s license reinstated and getting back to everyday routines, like cooking and cleaning…practical things).
The next on the agenda was our day pass for Palm Sunday. It was approved! Yay! Thanks to those who prayed for us about that. I am so excited (as I smile from ear to ear). We also talked about medication issues…I won’t really bore you with that.
Lastly we talked about our follow-up appointment with our neurosurgeon. We rescheduled our appointment due to my discharge date changing. On April 20th at 2:30 p.m. we have our appointment with Dr. Comair. I can’t wait to hear what they have to say! We have a follow-up MRI on April 17th at 9 a.m. Please pray that we have a good report and that they don’t find any of the tumor coming back!
Last Saturday was Katie’s birthday party. We began the party at the park near our house, but it was so windy and a little chilly too (at least for us Texans…LOL), that we had to move the party to our house in the front yard. Aaron and I were a little disappointed that we couldn’t have the party at the park…like I said earlier when you have a certain expectation and things don’t necessarily go that way…disappointments happen. I suppose that is just life…God had better plans though (but when doesn’t He?...LOL). We ended up having the party in our front yard, which worked out perfectly…all the wind was blocked by the surrounding homes and our vehicles; therefore, it wasn’t too cold, it was sunny and beautiful outside and the setting with everyone in our front yard made the party very intimate…it was just perfect for Katie’s first birthday!
My roommate left on April 1st to another facility…I wish she had longer here at TIRR. I think that she could have made so much progress; even though she made lots of progress while she was here. God has been so gracious to us…Mary was a wonderful roommate. On Friday, April 3rd, I moved to another room, and received another wonderful roommate…with a strong Christian family. Oh how God is so good to us! He is ever so faithful. My new roommate is Kristin. Please pray for her full recovery here is a little excerpt from her blog about her story:
Kristin is currently at TIRR Memorial Hermann Hospital in Houston. She's been diagnosed with AVM- Arteriovenous Malformation, a congenital defect. Kristin is a freshman at Texas A&M University. Her current major is Biology, but she's planning to switch to nursing during her next semester. She just had a great Christmas break with her family in Houston, including a trip to Orlando Florida. In College Station on Monday night, January 19th, after spending the day with her boyfriend Jeremy, Kristin complained of a headache and dizzyness. Then her speech became slurred. Jeremy took her immediately to the ER where she became unconscious and underwent a CAT scan and later an MRI which revealed the AVM and an aneurism which caused bleeding in her brain. On Tuesday night she was transported by helicopter to Houston.
Kristin has been here at TIRR for about 2 weeks and because of insurance reasons can only stay only for 2 more weeks…they will be having a fundraiser for her and her family. Please pray for God’s financial provisions for them. Here is the fundraiser information…Saturday, May 2 is Kristin's fundraiser event at Cypress Christian School. If you would like more information, or want to donate or help in any way, please visit http://francisfund.com. Please pray about their situation.
Thursday, April 2, 2009
It's time to party...
Ok i figured it was time for me to post something (this is aaron writing). I just read Tina's recent blog and i was smiling at her analogies. I just love her so much :) Sometimes I don't hear all the details of how everything is going in therapy (even though I am staying the night at the hospital) because at the end of the day we are both so tired we just sit, smile at each other and rest. Can anyone relate?
Anyways...like the title says, It is time to party. Grand Opening Party that is. This Sunday "Palm Sunday" will be the grand opening service at Thrive Church http://www.thrivechurch.cc/ - a new church in Katy Texas that Tina and I are having the honor of helping to get started (we were supposed to be helping out a lot more but God obviously had different plans of how he was going to use us these past 2 months - so recently our "help" has been mainly prayers). We know that many of you who are reading this are committed members at other churches and our goal isn't to pull you away...ultimately we are trying to reach the people in Katy who don't have a church home or don't even have a relationship with God yet. However...we would love for anyone and everyone to come out and visit us this Sunday (no committments). There should be lots of fun stuff for the kids, and free food plus you might get a chance to see Tina walking :)
Whether you come out or not please keep us in your prayers that we would be able to share Christ's love with the people in that area in a real and practical way...what I like to call "100% pure Jesus...with no "organized religious" fillers or self-righteous preservatives added." Mmmm, now that sounds refreshing.
Aaron
Anyways...like the title says, It is time to party. Grand Opening Party that is. This Sunday "Palm Sunday" will be the grand opening service at Thrive Church http://www.thrivechurch.cc/ - a new church in Katy Texas that Tina and I are having the honor of helping to get started (we were supposed to be helping out a lot more but God obviously had different plans of how he was going to use us these past 2 months - so recently our "help" has been mainly prayers). We know that many of you who are reading this are committed members at other churches and our goal isn't to pull you away...ultimately we are trying to reach the people in Katy who don't have a church home or don't even have a relationship with God yet. However...we would love for anyone and everyone to come out and visit us this Sunday (no committments). There should be lots of fun stuff for the kids, and free food plus you might get a chance to see Tina walking :)
Whether you come out or not please keep us in your prayers that we would be able to share Christ's love with the people in that area in a real and practical way...what I like to call "100% pure Jesus...with no "organized religious" fillers or self-righteous preservatives added." Mmmm, now that sounds refreshing.
Aaron
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 days...at 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?...it 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)...you 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 here...so 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…www.mentisneuro.com)…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 Mentis...so “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 (thrivechurch.cc)...Since 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.
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)...you 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 here...so 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…www.mentisneuro.com)…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 Mentis...so “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 (thrivechurch.cc)...Since 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.
Saturday, March 21, 2009
God's blessings everyday...
Well it's been a few days since I (Tina) posted and I have had a lot of progress in my therapies since being here in TIRR. Yesterday we had a family conference…which (like I said earlier if you know anything about my job)…was just like an ARD meeting…basically the gist of what we talked about was the progress that I had made so far in my therapies and what goals that they have for me…which eventually is for me to fully walk again and be able to be back to being a mom, wife, and go back to my job and be fully functional. They all said that I have made great progress so far. The speech pathologist even made comments about how someone who filled in for her one day said that I could do some of the tasks better than she could. That made me feel good, that at the least cognitively, I am still all there…whatever that really means J They also mentioned that they are tentatively looking at a discharge date of April 16th, of course all depending on my progress. And then maybe putting me into what they call a post acute therapy setting…where it is a more residential looking setting and not so hospital like. Where I would be able to come and go as I please during the day, but I would have to stay there at night. Basically, it would be like living in my own dorm room, as well as getting therapy during the day, instead of driving for outpatient therapy every day. All these things depend on my progress here and what I look like when they are ready to discharge me.
At this point, I just want what God’s will is for us…yes I want to be home already, but at the same time…I want to be able to take care of my family in the way that God would have me take care of them.
They also approved a day pass for me to go to Katie’s birthday party. Which I was so excited about! I can’t believe she is already turning one! Over the past few weeks she has gotten so big and has developed such a personality. She is getting so big right before my eyes…before I know it, she’ll be walking…she is definitely getting there.
In both physical and occupational therapy I feel like I have made so much progress in just the week and a half that I have been here. I know that Aaron has seen the little baby steps…that even though they seem little to the world out there and if I were from the outside looking in…I would probably think that they were just tiny steps, but from the inside looking out…they are HUGE steps. When I first got here…the occupational therapist had me dress myself without any help…after I finished I was so exhausted. She even had to help me put my shoes on towards the end because I was so tired. I felt like I had just sprinted five miles. I thought to myself…is it going to be like this everyday, just getting dressed? I couldn’t imagine how I would feel if I had to do anything else. Wow, I would have never thought it took this much effort, just to get dressed. But thank God that everyday since then I have improved and it has gotten much easier. My strength and endurance have enhanced and I have improved on learning how to dress myself. The neuropsychologist here mentioned that a friend of hers that is a Physical Therapist said that for everyday that you are in the hospital and aren’t moving it takes 7 days to regain the strength back for that one day. Which if that were accurate…it would take me 63 days to regain all of my strength back to where I was before. But God has helped me regain so much in so little time. I can use my left hand and lift it well now, and over the past few days I have been able to move my left leg little by little and the physical therapist has had me walking and standing on it…of course with her help and the use of some really neat assistive devices. I am able to walk from point A to point B. At first I was really slow, but now it seems like I could just get up and go on my own; even though at this point I know that without her assistance or the use of these neat little techniques and devices…I wouldn’t be able to, but I know soon that I will be walking independently…it just takes time. God has definitely shown me how I need to know my limits of how much I can do…and can’t do. He has also taught me to be obedient to my therapists…so when they say stop or do this or that…I MUST listen…and for some of you who know me well…you know that I can be stubborn and determined to be independent and do things on my own…which I think has gotten me this far in life (of course with God’s help). I know that this experience is only helping me and making me stronger. I also feel like this is humbling me, that way my children will also have a good role model for a mom and Aaron will have a wife that is obedient and submits to him as Christ submitted himself to the church.
Also, when I first arrived here at TIRR…I was totally dependent on having someone help transfer me from my bed to the wheelchair and to standing and sitting in the bathroom (which may be too much info for some of you), but right now this is my reality…a humbling one at that. Since being here, I have learned to stand on my own and position myself to transfer myself into my wheelchair and I have learned to be able to stand on my own and help stand and sit with minimal assistance in the bathroom. Which I know that for this probably sounds like no big deal, but if you really think about how many times a day you stand up and down to move around and do things…it is a HUGE deal. Even the little things like if you just need a pen across the room on the table…you’ve got to move over there to get it. Throughout this whole process I have to thank Aaron for being such a trooper and sacrificing himself to help me. He has sacrificed so much sleep and even in the times that he was so exhausted and tired and I just needed him to get one more thing for me…whether it was to rub my feet or get me fresh ice water…he was willing to do it. Aaron has been the epitome of sacrifice for me over the past three weeks and even in those moments where we were both so exhausted and tired…he continued to ask me “is there anything else you need?” and I have thought to myself…LORD I don’t deserve such a wonderful man, but God knew even before I was formed in my mother’s womb. Who he would choose to marry me…and he perfectly chose Aaron to balance me out.
Aaron seems to have learned so much about how to help me including different techniques and ways to assist me. He has even gone to several of my therapy sessions with me to learn what things they have been doing with me and what types of things I can do at home to help me strengthen myself when I leave here. I just wish he didn’t have to go back to work on Monday. I will definitely miss him when he goes back.
Before I finish up this blog for today…I wanted to say that since I am feeling much better (comparably to after surgery in the hospital)…I am welcoming visitors up here at TIRR (www.tirr.org) if you would like to come visit.
Please call Aaron at 281-923-6524 to set up a time and day. Know that I am in therapy pretty much all throughout the day (M-F) until about 4 p.m. So early evenings or weekends would be best…visiting hours are until 9 p.m.
p.s. Please keep my family in your prayers. We just found out this past Monday that my maternal grandmother passed away.
At this point, I just want what God’s will is for us…yes I want to be home already, but at the same time…I want to be able to take care of my family in the way that God would have me take care of them.
They also approved a day pass for me to go to Katie’s birthday party. Which I was so excited about! I can’t believe she is already turning one! Over the past few weeks she has gotten so big and has developed such a personality. She is getting so big right before my eyes…before I know it, she’ll be walking…she is definitely getting there.
In both physical and occupational therapy I feel like I have made so much progress in just the week and a half that I have been here. I know that Aaron has seen the little baby steps…that even though they seem little to the world out there and if I were from the outside looking in…I would probably think that they were just tiny steps, but from the inside looking out…they are HUGE steps. When I first got here…the occupational therapist had me dress myself without any help…after I finished I was so exhausted. She even had to help me put my shoes on towards the end because I was so tired. I felt like I had just sprinted five miles. I thought to myself…is it going to be like this everyday, just getting dressed? I couldn’t imagine how I would feel if I had to do anything else. Wow, I would have never thought it took this much effort, just to get dressed. But thank God that everyday since then I have improved and it has gotten much easier. My strength and endurance have enhanced and I have improved on learning how to dress myself. The neuropsychologist here mentioned that a friend of hers that is a Physical Therapist said that for everyday that you are in the hospital and aren’t moving it takes 7 days to regain the strength back for that one day. Which if that were accurate…it would take me 63 days to regain all of my strength back to where I was before. But God has helped me regain so much in so little time. I can use my left hand and lift it well now, and over the past few days I have been able to move my left leg little by little and the physical therapist has had me walking and standing on it…of course with her help and the use of some really neat assistive devices. I am able to walk from point A to point B. At first I was really slow, but now it seems like I could just get up and go on my own; even though at this point I know that without her assistance or the use of these neat little techniques and devices…I wouldn’t be able to, but I know soon that I will be walking independently…it just takes time. God has definitely shown me how I need to know my limits of how much I can do…and can’t do. He has also taught me to be obedient to my therapists…so when they say stop or do this or that…I MUST listen…and for some of you who know me well…you know that I can be stubborn and determined to be independent and do things on my own…which I think has gotten me this far in life (of course with God’s help). I know that this experience is only helping me and making me stronger. I also feel like this is humbling me, that way my children will also have a good role model for a mom and Aaron will have a wife that is obedient and submits to him as Christ submitted himself to the church.
Also, when I first arrived here at TIRR…I was totally dependent on having someone help transfer me from my bed to the wheelchair and to standing and sitting in the bathroom (which may be too much info for some of you), but right now this is my reality…a humbling one at that. Since being here, I have learned to stand on my own and position myself to transfer myself into my wheelchair and I have learned to be able to stand on my own and help stand and sit with minimal assistance in the bathroom. Which I know that for this probably sounds like no big deal, but if you really think about how many times a day you stand up and down to move around and do things…it is a HUGE deal. Even the little things like if you just need a pen across the room on the table…you’ve got to move over there to get it. Throughout this whole process I have to thank Aaron for being such a trooper and sacrificing himself to help me. He has sacrificed so much sleep and even in the times that he was so exhausted and tired and I just needed him to get one more thing for me…whether it was to rub my feet or get me fresh ice water…he was willing to do it. Aaron has been the epitome of sacrifice for me over the past three weeks and even in those moments where we were both so exhausted and tired…he continued to ask me “is there anything else you need?” and I have thought to myself…LORD I don’t deserve such a wonderful man, but God knew even before I was formed in my mother’s womb. Who he would choose to marry me…and he perfectly chose Aaron to balance me out.
Aaron seems to have learned so much about how to help me including different techniques and ways to assist me. He has even gone to several of my therapy sessions with me to learn what things they have been doing with me and what types of things I can do at home to help me strengthen myself when I leave here. I just wish he didn’t have to go back to work on Monday. I will definitely miss him when he goes back.
Before I finish up this blog for today…I wanted to say that since I am feeling much better (comparably to after surgery in the hospital)…I am welcoming visitors up here at TIRR (www.tirr.org) if you would like to come visit.
Please call Aaron at 281-923-6524 to set up a time and day. Know that I am in therapy pretty much all throughout the day (M-F) until about 4 p.m. So early evenings or weekends would be best…visiting hours are until 9 p.m.
p.s. Please keep my family in your prayers. We just found out this past Monday that my maternal grandmother passed away.
Tuesday, March 17, 2009
Humbled and Honored...
Recently I was honored by a friend who purchased tickets before Christmas for me and a few other mighty women of God to attend a Christian Concert with Chris Tomlin, Israel Houghton, and Christy Nockels...needless to say it was an awesome evening. We had dinner and fun girl time, but the best part of the night was how God showed off (of course not in a pompous manner, but in a humbling way for me)...my Daddy God is always there...just with the perfect timing.
That was an incredible evening. Just having Israel and New Breed at the concert felt like home, (if you are reading this blog and don't know already...Israel is a worship leader at Lakewood Church...where Aaron and I called our church home for six years..until recently) it felt like I was worshiping back at Lakewood. Then came "The song" Christy Nockels recently wrote a new single that will hit stores in June 2009. If you were to have listened to the song that night...if you knew us...and all that was going on...you would have thought it was written for Aaron and me. The lyrics say this...
"With You...I can go anywhere...I can do anything...because You are the song I breathe...with You..I can go anywhere...I can do anything... because You are the song I breathe... and with You...You are the air I breathe... because You are my everything and I am an offering...I may live and I may die either way You are glorified...bless the day I give my life away...so let my life light up like the city lights...let it burn for You in the darkest night Lord..Let my life light up like the city lights...let it burn for You in the darkest night...oooohh..and in you...I can begin again..I am part of a bigger plan...because You are the great I AM...and in You...your life is in my veins and you've broken all my chains because You are the God who reigns...I may live and I may die either way you are glorified...bless the day I give my life away...So let my life light up like the city lights and let it burn for You in the darkest night Lord...let my life light up like the city lights... let it burn for You in the darkest night...my life will shine on earth and my Father will be praised...my light will shine on earth and my Father with be praised...let my life light up like the city lights...and let it burn for You in the darkest night...and let my life light up like the city lights...and let it burn for You in the darkest night LORD...and let my life light up like the city lights and let it burn for You in the darkest night and my light will shine on earth for You."
God has reminded us day in and day out throughout this entire process...through the words, texts, emails, letters, blog comments, songs and just through His word that this has been to glorify my Father. I (Tina) want to be exactly what those words spoke in that song...I want my life to light up like the city lights in the darkest night and whether I live or die I want my Daddy to be glorified...I want my light to shine on earth for Him! Both Aaron and I are so humbled and honored to be used by our Father in this way...just to glorify Him. I am grateful and honored to be in this place...but as humans we do question things...and I have to ask myself the question..."why use us God?" At the end of the day however we always come back to..."Not our will, but Your will be done Father" and end up feeling humbled and honored to be used in this way.
-- Tina
That was an incredible evening. Just having Israel and New Breed at the concert felt like home, (if you are reading this blog and don't know already...Israel is a worship leader at Lakewood Church...where Aaron and I called our church home for six years..until recently) it felt like I was worshiping back at Lakewood. Then came "The song" Christy Nockels recently wrote a new single that will hit stores in June 2009. If you were to have listened to the song that night...if you knew us...and all that was going on...you would have thought it was written for Aaron and me. The lyrics say this...
"With You...I can go anywhere...I can do anything...because You are the song I breathe...with You..I can go anywhere...I can do anything... because You are the song I breathe... and with You...You are the air I breathe... because You are my everything and I am an offering...I may live and I may die either way You are glorified...bless the day I give my life away...so let my life light up like the city lights...let it burn for You in the darkest night Lord..Let my life light up like the city lights...let it burn for You in the darkest night...oooohh..and in you...I can begin again..I am part of a bigger plan...because You are the great I AM...and in You...your life is in my veins and you've broken all my chains because You are the God who reigns...I may live and I may die either way you are glorified...bless the day I give my life away...So let my life light up like the city lights and let it burn for You in the darkest night Lord...let my life light up like the city lights... let it burn for You in the darkest night...my life will shine on earth and my Father will be praised...my light will shine on earth and my Father with be praised...let my life light up like the city lights...and let it burn for You in the darkest night...and let my life light up like the city lights...and let it burn for You in the darkest night LORD...and let my life light up like the city lights and let it burn for You in the darkest night and my light will shine on earth for You."
God has reminded us day in and day out throughout this entire process...through the words, texts, emails, letters, blog comments, songs and just through His word that this has been to glorify my Father. I (Tina) want to be exactly what those words spoke in that song...I want my life to light up like the city lights in the darkest night and whether I live or die I want my Daddy to be glorified...I want my light to shine on earth for Him! Both Aaron and I are so humbled and honored to be used by our Father in this way...just to glorify Him. I am grateful and honored to be in this place...but as humans we do question things...and I have to ask myself the question..."why use us God?" At the end of the day however we always come back to..."Not our will, but Your will be done Father" and end up feeling humbled and honored to be used in this way.
-- Tina
Friday, March 13, 2009
THE PROGRESS...
Today was day two of therapy at TIRR. Last night I got more sleep here than I have in the past two weeks...of course that is all due to medications, surgery, people just checking up on me and making sure I was getting the best care in ICU and on the regular floor at St. Luke's. My care on the ICU units was phenomenal; however, if you understand ICU it is intensive care...meaning people are checking your blood pressure, drawing blood, or taking you to some MRI, CT scan or poking you with a needle for blood cultures almost every single moment you are there. It was intense to say the least and physically exhausting. So all that to say...I had such a restful night and it made my day, which was full of intense therapy, go well.
I am currently in individual Occupational Therapy, Speech Therapy, and Physical Therapy. As the week progresses next week I will be a part of other therapies, but those will definitely be group based. They sound like some really neat things...one will be a pool/water therapy group. I am totally pumped about that. Another group that they mentioned was a "cognitive group" (not really sure what that means, but she did mention that there are a range of cognitive skills in the group), another group that was mentioned was a group on people re-learning to use their hands. As time goes on, I will tell you more about the details.
For all of my co-workers and those that actually understand what Aaron and I do for a living.... This experience has given me a whole new perspective on our careers and what we can do to improve ourselves, not only as clinicians, but as parents, and being on the "other side as the patient/client". It helped me not only be sympathetic, but of course be empathetic as well. God has been faithful to show me the areas of my career that I need improvement in. Being compassionate and being passionate for what I do, are two of the things that need to be added to my evaluation performance (are you taking notes Janet...she is my supervisor for those of you who don't know). The best supervisor you could ever have too!
For those of you at my job...you guys will get a laugh out of this. Like I said earlier I am now in OT, PT, and Speech and eventually they will do cognitive testing. Of course they have to give me initial evaluations ...well they are going to eventually have to give me neuropsych tests...which they of course tried to already ask me questions about the WISC and were thinking of using the WJ and of course I had to be honest, confess, and say I knew a little something about the tests....just a LITTLE something. LOL.
I wanted to just add and give God some glory in this BLOG...I have had a phenomenal nurse here named Rosa who is a strong Christian and has been encouraging my heart to continue to strive and work hard. She has been so so sweet. Oh how good God is... all the time. Today I had the opportunity to pray with one of the nurse's assistants about her relationship with a guy that she has been with on and off for the past twenty or so years...she truly wants a stable guy and marriage. It was so humbling to be able to pray for her; she said "I really didn't know how to pray for that...thanks. " P.S. I used both of my hands to type this blog and i am making great progress on using my left hand and making leaps and bounds being able to use my left side of my body...not quite standing on my left leg, but I know that God will make it come soon...I am working really hard.
- Tina
I am currently in individual Occupational Therapy, Speech Therapy, and Physical Therapy. As the week progresses next week I will be a part of other therapies, but those will definitely be group based. They sound like some really neat things...one will be a pool/water therapy group. I am totally pumped about that. Another group that they mentioned was a "cognitive group" (not really sure what that means, but she did mention that there are a range of cognitive skills in the group), another group that was mentioned was a group on people re-learning to use their hands. As time goes on, I will tell you more about the details.
For all of my co-workers and those that actually understand what Aaron and I do for a living.... This experience has given me a whole new perspective on our careers and what we can do to improve ourselves, not only as clinicians, but as parents, and being on the "other side as the patient/client". It helped me not only be sympathetic, but of course be empathetic as well. God has been faithful to show me the areas of my career that I need improvement in. Being compassionate and being passionate for what I do, are two of the things that need to be added to my evaluation performance (are you taking notes Janet...she is my supervisor for those of you who don't know). The best supervisor you could ever have too!
For those of you at my job...you guys will get a laugh out of this. Like I said earlier I am now in OT, PT, and Speech and eventually they will do cognitive testing. Of course they have to give me initial evaluations ...well they are going to eventually have to give me neuropsych tests...which they of course tried to already ask me questions about the WISC and were thinking of using the WJ and of course I had to be honest, confess, and say I knew a little something about the tests....just a LITTLE something. LOL.
I wanted to just add and give God some glory in this BLOG...I have had a phenomenal nurse here named Rosa who is a strong Christian and has been encouraging my heart to continue to strive and work hard. She has been so so sweet. Oh how good God is... all the time. Today I had the opportunity to pray with one of the nurse's assistants about her relationship with a guy that she has been with on and off for the past twenty or so years...she truly wants a stable guy and marriage. It was so humbling to be able to pray for her; she said "I really didn't know how to pray for that...thanks. " P.S. I used both of my hands to type this blog and i am making great progress on using my left hand and making leaps and bounds being able to use my left side of my body...not quite standing on my left leg, but I know that God will make it come soon...I am working really hard.
- Tina
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