Saturday, December 31, 2011
Sorry for such a delay in our posting. We first hope everyone had a wonderful Christmas. Secondly, we hope that you have had a great 2011 and are looking forward to a great 2012.
2011 has obviously been an interesting year. A birth of a baby and continued trials and victories with M's seizures it has certainly been a fast moving roller coaster. These last couple months have certainly been interesting as November proved to be one of M's best months in years and December was looking to repeat and better the Thanksgiving month. Until this week....
This week has been a struggle at best. We are not sure entirely why, but just in the last 4 days M has had close to 30 seizures, with two days of 9 plus. We are certainly baffled as to what has changed and what has caused the increase, but M amazingly keeps pressing on. Continue to lift her up this week as it truly has been very challenging and emotionally draining on her.
Additionally, many of y'all recall our precious Angel of a Nanny, E. E truly has been a blessing this year and we are grateful for the last few months that we have been able to have her. However, earlier in the year she made a commitment to another family to work for them and her last day with us was this past Friday. While the seizures made for an emotional week, saying goodbye to our recent angel made it even more difficult.
That said, we are in the hunt for a new nanny. So....if any of you out there has someone in mind or know of someone who would want to nanny, we are interviewing. Please send them our way!!!
Lastly, while we celebrated this month B's 5th year of being cancer-free we will be getting the official news this week from MD Anderson. Praise the Lord for continued good news of B being cancer-free.
We pray for everyone a blessed end to 2011 and blessed beginning to 2012!
Tuesday, December 13, 2011
M begins another round of IVIG tomorrow and we are praying that we'll see improvement similar to what we have experienced as of late. That said, we seem to be going through some peaks and valleys. Over the last month plus she has experienced multiple days without a seizure. However, those days seem to be followed by some of the roughest days we have had to experience yet. There is no rhyme or reason as to the sudden reappearance of the seizures after her good days. So, we are prayerful the the seizure-free days will increase and M will be able to enjoy her time with Critter.
Please also pray that the infusion will run smoothly. We were supposed to have received all the meds and supplies today to begin treatment first thing in the morning. However, that did not happen and we'll now be delayed a few hours before we are able to begin the treatment.
Side note, praise God, M has gone almost 4 days without any seizures!!!! May it continue!
Thursday, December 8, 2011
We're here! The big F-I-V-E!! It's the mark that they tell you to hold out for...we no longer have to say "No Evidence of Disease." Now, we are allowed to say that he's in "Remission!" Can I get a Praise Jesus? Yes, today is the day that we celebrate because Five Years Ago today, the doc told us that B was cancer free!!
Though today is a day of celebration, it means so much more for me. It is a day that reminds me of how much I adore this man the Lord has blessed me with for the last eight plus years (I want at least another 90+)!!! This man constantly denies himself to serve others. Just as his shirt read that he wore to each chemo appointment, "Not I, but Christ!" That is B, constantly seeking ways to take the attention off of himself and focus on others and how to bring glory to our Lord!! Having cancer never had anything to do with him, but with others. How could he glorify the Lord and serve others? That was his goal!!!
I'll put some links in here to try to make the post short, but if you want to glance back at the journey, you can follow the links.
The original blog
September 11, 2006-The day B was diagnosed.
December 8, 2006-The day we found out he was cancer FREE
December 11th-one of our sweet friends ran the White Rock Marathon (pregnant) for Ben
So, the point of this post is to just shout out praises to the Lord!!
I am so grateful that the Lord created this man and placed him in my life. I can't (and don't want to) imagine life without him and the daily challenge that he provides (with no words, but actions) in my daily walk with the Lord!! Thank you, Lord, for healing B and allowing even more people to meet him and be blessed by him. May you always get the glory, Lord!!!
Thursday, November 17, 2011
After having seven for the day before we left the ER, they allowed us to come home. I had two more that night. So, nine seizures on Sunday. That was after the IV meds that usually do the trick.
The home health nurse came over in hopes of giving me the IV meds, but they never arrived and so she gave me IV fluids.
Started the IV meds and had three seizures after she gave me the IV meds. Doesn't make sense.
Started the IV meds in the morning, thinking that might help...not so much
*Thursday-It's 3p and I've already had three seizures.
We are praying for wisdom for the doc on the best direction to take from this point. I "shouldn't" be having this many seizures with the treatment we are doing.
My labs are all coming back very weird, as well.
I will try later this evening to put a post of the fun that the Nanny and I had today...here's a hint: a bird flew into our window and got hurt. B brought it inside so that we could nurse it back to health. When the Nanny and I walked in to check on it....
Sunday, November 13, 2011
Then, today happened. I woke up around 2:45 this morning having a pretty bad seizure. I felt yucky, even super moody. I could barely speak. B and P went to church. Once they arrived back home and finished lunch, I had another one. My doc calls four seizures the breaking point and when she wants me to take rescue meds (which typically don't work). So, she had shared with us through the IVIG treatments that she wanted me to go to the ER over the weekend if I had 3 or more seizures in a day. Thus, B called her when I reached three seizures and she said to head to the ER. I had another one soon after. Our sweet angel on earth that we told you about a few weeks ago was at our house very soon after to take good care of P. She is such a treasure.
So, we are still in the ER.
They've done the IV meds.
I'm at six seizures for the day after an entire week of NONE.
They're still trying to decide if they keep me overnight or not.
We met a precious nurse, J, that has had many similar medical issues and her little boy, R, (about the same age as P) just started having seizures. Will you say a special prayer for their family? J, R, and her husband, M.
If no more seizures tonight, we'll go home this evening and have home health do infusions all week. If more seizures, I guess we'll stay and see what the doc decides.
Thank you all for praying!!!!
Thursday, November 10, 2011
WOW-to the response to treatment
OW (a.k.a. ouch)-to the response to treatment
Why are we saying WOW? Well, we've been blessed to watch God perform some miracles this week. As you know, my treatment last week went well (much better than when we did it in May) except for Friday when my vein blew and we weren't able to finish with the fluids. Some craziness happened with the doc's answering service and so we couldn't get an answer from them on what to do about it. So, the pharmacy gave their recommendation. That was followed by a rough seizure that evening and four more on Saturday. However, my last seizure was on Saturday around 7pm. Yes, you read that correctly, not even an aura. Praise the LORD!!! Thus, WOW!!!!!
Why the OW? We believe that the fluid infusion was an important part of avoiding side effects. It is stated that it's important to get extra fluids and the pharmacist thought that drinking that much more would be fine. Not so much. Thus, I have been battling a pretty intense migraine since Friday. It comes and goes, but it's coming more than it's going! For some reason, when I eat sugar, it helps a bit, even better than the high dose pain meds they want me to take. Anyone have a good explanation for that one? Obviously, after the diet I was on to treat the seizures that didn't allow for carbs, I'm thrilled to "have" to eat sugar! I'm not thrilled with the headache, though. So, big time OW as we are out of sugar-y treats since hot stuff's b-day has passed and we've eaten all of the sweets that we had hanging around for his celebration.
The doc also let me know that my potassium levels are elevated for some reason. So, she's going to run labs again soon to see if it was a fluke/lab error or if we need to be looking at that, too. She has also ordered an infusion first thing tomorrow of the fluids that were missed last week. The hope is that it will help with the headache.
So, it has been so fun to watch the Lord perform a miracle and heal me. Five days without any type of seizure is amazing!!! WOW!! Go God!! We are also blessed to have a doc that is willing to pray with us about each step of treatment.
Will you each continue to pray? It seems that each time we post that things are better, they get yucky again! So, there is someone out there that the Lord loves talking to and He misses you when you stop praying! Keep talking to our sweet Daddy God!! He loves hearing your voice!
Now, to end on a precious note!
Sunday, November 6, 2011
It's the day that we celebrate the man of my dreams, the love of my life, the man I respect most on this earth...the man that makes the equation of two becoming one work!!!!
Today is B's b-day!!!
As most of you know, this guy loves Tex-Mex!! However, his wife doesn't (I know I'm weird). However, it's his birthday and so he gets everything he wants!!! Thus, we went to Pappasito's last night!!!
|Celebrating with his Critter!!|
|You can tell that she loves hangin' with her Daddy!|
|Now, it's time for the whole restaurant to celebrate B, Pappasito's style!!!|
|Whatcha got on your head, Daddy?|
|Learnin' to blow out a candle since her b-day isn't too far away.|
|How do I look?|
|Can you tell that she is crazy about her Daddy? We all are!!!|
Happy Birthday, my love!!! You are amazing and I pray the whole world celebrates YOU today!!!!! You deserve it!
Thursday, November 3, 2011
As you know, we were concerned about the IV infusions for many reasons and had a few specific prayer requests...
*the treatment will run smoothly...so far, so good!
*they can find a good vein and not blow it so it's available for the rest of the treatments...the nurse did a fantastic job and has placed it each day on the first stick. She was even able to use the same vein today that she used yesterday. She also left it in tonight so that she won't have to stick me again tomorrow.
*the nurse truly does know how to administer this treatment safely...they even sent another nurse out to the house today so that our nurse could train her in how to administer this particular treatment. So, there is a vote of confidence in her abilities!!
*I can still love on my sweet little girl...she definitely knows that something is happening to her Mommy (she wants to pull on all of the tubing any chance she gets), but I've been able to get some good hugs.
*B will be able to get work done from the house since we know he needs to be here to watch over the process since they don't seem to be on their game and if my seizures do increase like last time...he has been able to accomplish a lot from the house, but still come and sit with me when they are starting new lines or changing things. It's wonderful to have him by my side protecting me. I've also not had any seizures during the treatment (I had 16 seizures the first three days of treatment last time). I only had a very small one on the way to bed last night.
*God will receive the ultimate Glory despite my yucky attitude right now in how this seems to be unfolding!!...only HE knows the answer to this one, but I pray that He is receiving glory.
The Lord truly has heard your cries and our cries and things have gone quite smoothly. Tomorrow will be a tad different because the nurse already had another appt. scheduled before my orders came in...so, she will be trying to start the treatment for that appt., another nurse will show up to finish covering that patient, and then she'll come here. Thus, we will be starting a bit later. Starting at 10am each morning has us finishing close to 5p. So, if we start much later, we'll run in to the evening which is intended to be a bit of a celebration since hubby's b-day is on Sunday!!!
Do you want to hear about more prayers being answered? I do!! Our precious angel of a nanny told us today that she can at least stay until January, rather than the end of this month!!!! She was able to speak with the family that she would be helping and they said they are good until January!!! WOW!! So, the Lord heard your cries and our cries, once again, and chose to answer our prayers! Jesus, Lord, we thank you!!!
Wednesday, November 2, 2011
However, I ended up spending almost three hours on the phone yesterday afternoon with the pharmacy, home health co., and doc's office. It was unbelievable. My doc did an amazing job of writing the orders and getting everything submitted clearly (the prescription stated treatment on 11/1. 11/2. and 11/3. However, the pharmacy and home health company somehow got confused. It was frightening. We kept saying, "If I was an 86-year old woman that was trusting these people to get it done right..."
The pharmacy was late getting everything delivered to the house. Then, the Home Health company called and said they were on their way and I told them the meds and supplies had not been delivered yet. They said it was no big deal because they were only supposed to do admit paperwork. I explained that the doc was very clear that she wanted treatment started Monday, but was settling for Tuesday. He said he would make it happen. Then, he arrived and told us he had parked at the end of the street because he couldn't find our address and just started walking up the street until he found it (that inspired great confidence)!!! Did I mention he had GPS, too?
Home health then said that there was no way they could start the treatment yesterday because the treatment would take too long (4-6 hours) and he had another appt. and they couldn't find another nurse that was trained in how to administer these treatments. Another confidence builder. So, they promised they would send out a new nurse Wed-Fri to administer the treatments. This was after they told me this guy was the best in the area, but he wouldn't be able to do it...yikes!!!
The courier finally arrived with everything from the pharmacy. I thought I remembered having to refrigerate something last time. So, when he arrived, I asked what needed to be refrigerated. He said, "maybe something in that box, they didn't tell me to refrigerate anything." So, I called the pharmacy and they said they forgot to label it because they were trying to get it out so quickly. Confidence, anyone? What if I was an 86 year old woman and couldn't even lift the box and just left it at the door until today?
So, when I asked what needed to be cold, they told me two things. I was then transferred to someone else who said not those two things. It was amazing. The pharmacist finally got on the phone and told me what needed to be refrigerated. Then, she told me to take it out in the morning prior to treatment so it could reach room temp. She actually told me that if I kept my house close to the same temp as hers (and what would that be?), I should take it out about three hours before the treatment. Otherwise, maybe one or two hours, but make sure it's room temp when you get the infusion, but you don't want it out too early either. Anyone else confused...?
She also said that she assumed that I remembered how to do it all since I had this treatment done before...I reminded her that my memory has been severely affected and I don't know my name certain days. As well, the last time we did these treatments my seizures went berserk and thus I have very little recall of the process, but she's trusting me to properly store and handle the medication. Not to mention that reading is still a huge seizure trigger for me and so trying to read each package for instructions would only cause more seizures. Which it did last night as I tried to get everything organized for today.
We have some sweet friends that own a Home Health co. and we tried to get it set up for them to come do the treatment, but the pharmacy wasn't willing to pay them (that's apparently how home health works: Pharmacy gets paid a lump sum by insurance and then they pay for home health from that lump sum). Our friend seems to know exactly what she's talking about and was building our confidence in the way it would all play out...she even called the pharmacy to try to make it work. They said, "no, we would have to pay all of the out of pocket difference and we are talking many hundreds of dollars." So, she gave us some tips since the old home health co. basically blew all of my veins last time.
B spoke with the nurse that should be starting my treatment today and she gave us the exact opposite advice from our friend (who explained why those methods would hurt more than help). So, if you've not already gathered it, we are begging for prayers for the Lord to be in complete control since the pharmacy, home health, etc., are not comforting us.
Please pray that:
*the treatment will run smoothly
*I can still love on my sweet little girl
*they can find a good vein and not blow it so it's available for the rest of the treatments
*the nurse truly does know how to administer this treatment safely
*B will be able to get work done from the house since we know he needs to be here to watch over the process since they don't seem to be on their game and if my seizures do increase like last time
*God will receive the ultimate Glory despite my yucky attitude right now in how these seems to be unfolding!!
Thank you precious Prayer Warriors! I pray you find joy sitting in our Big Daddy God's Arms this morning talking to HIM!!!
Tuesday, November 1, 2011
Good news...Princess will not have to be hospitalized to receive her treatment. Rather, we will have home health care here for the next few days administering the therapy and then the doctor will determine whether or not to do weekly therapy or monthly therapy. Please pray that all will go well with the IVIg, Princess will have a favorable response, smooth coordination with the home health agency and those involved in making all this happen.
Sunday, October 30, 2011
Just a quick update. Many of you know that M's seizures have been back for the last few weeks (21 in the last four days). It has been really difficult especially having experienced a great reprieve a little over a month ago. But we come again asking for your continued prayers. Pray also for supernatural wisdom for our Neurologist. We will be visiting with her this week to come up with a strategy for moving forward. We aren't sure if this means beginning the IV therapy that we did over the summer, which actually increased M's seizures or do we do something completely new. So please pray for all of us as we continue to seek what direction we take.
Monday, October 24, 2011
She blesses our home when she arrives each morning. Though you would guess that angels are too busy to stay for long, she actually stays all day!!! She loves little Miss P with all of her heart. That amazing heart of hers longs to serve. She is always looking for ways to bless us. She has become a member of our family. She is a gift from the Lord to me that allows me to have peace that no matter what the day looks like with seizures, there is a precious angel protecting "our little angel!"
|Our Angel on Earth|
|Enjoying creation with our little gift!|
|She brings a smile to each one of us.|
|Little Miss P just loves her!|
Our angel has another assignment from the Lord. When she started visiting us, she was only part-time and accepted a job starting at the end of November that would be full-time. However, when my seizures increased, we asked her to join us full-time. We want to keep her. Yet, she has given her word to this other family to start at the end of November. This means that we will need someone new to come in and help with little Miss P. We truly need someone that can be full-time. Please join us as we pray for that perfect angel to be able to come and help us with Miss P. If any of you have suggestions, please share. Otherwise, your prayers are coveted.
Tuesday, October 18, 2011
Saturday, October 1, 2011
Monday, September 19, 2011
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Saturday, September 17, 2011
Odd questions, but for us there is conviction from the Lord to ask. Many of you know that Princess has had a wonderful 10 weeks of reprieve from her seizures. She has been able to have great time with Critter. Enjoy time coming up with creations in the kitchen. Now although she was not entirely seizure-free as she was still having multiple auras, she none the less had amazing energy and overall, felt good! Being off the Ketogenic Diet has even been nice as we have averaged eating out at Freebirds about twice per week!
However, last week something literally changed and the auras intensified. Then, increased in number. Lasted longer in duration. Were more seizure-like... The seizures were back. Princess has seen the power of prayer throughout these 5 years of our life and again, we're calling on our faithful friends, brothers, sisters....Prayer Warriors. When we call on the Lord's name, He is faithful to hear us.
So we are asking for your support, yet again. Please pray. Today, Princess has had 6 seizures. It has been a rough day. She felt like the Lord was wanting us to post this as maybe it will be a reminder for one of you who are followers of the Foxhole to talk to the Lord if you haven't today? Maybe it's time for one of you to visit with the Lord for the first time in a week. Or maybe you read the good news of Princess' restoration, and haven't reached out to the Lord beyond that.
Our lives are for God's glory. In sickness and in health we believe this. So while we don't quite understand days like today, we do know that God is faithful and loves to hear us call upon His name.
So have you visited with the Lord lately? And when you do, if you wouldn't mind lifting up an amazing woman who despite life's many curve balls, continues to choose joy in the midst of struggle.
2 Chronicles 7:14
Thursday, August 18, 2011
I haven't felt that the Lord has said I could proclaim complete healing yet. As much as I want to, I haven't felt HIM say, "tell the world!"
I have continued to have auras. By definition, they are still seizures. However, the Mayo Clinic said I could count them separately since I can keep my eyes open and I'm not as tired when they are over...thus, they measure auras only as a sign of improvement.
Last month, I only had 33 for the entire month (and NO "seizures"). This month, I'm already at 32 and we're only half way through...I had eight yesterday and I've already had two this morning. Just a few auras and I still have basic energy. A day like yesterday and I'm completely spent.
We went to see my neurologist last week and she's just as stumped as to why I stopped having seizures. Again, we praise the LORD for that healing!!!!
However, it also leaves her not knowing how to get rid of these auras. Obviously, prayer and complete reliance on the Father is the first step.
We are also trying to decide if I start the IVIG again. The last time I did it, the seizures went crazy. However, we found that it was rendering the diet useless due to the proteins in the treatment. So, now that I am on low dose meds (lowest dose I've ever been on without the Ketogenic Diet), in theory, there is something to help with control...The doc also said that the seizures could come back if we start the treatment again.
So, we are stumped. We are trying to hear the Lord and walk in the direction that HE leads, not what makes the most sense to us.
The sweet lady helping us with Miss P came later yesterday which gave me a chance to hang with Miss P by myself. I loved that special Mommy/Daughter time. However, I had one sitting at the desk with her in my arms and I couldn't set her down in enough time. So, I had to just lean over to make sure she didn't fall. She cried the whole time, which made it last longer. It is so frustrating...I just want to be healed so that I can be her Mommy with no fears attached.
Sorry for the long post...Please just continue joining us in prayer for HIS ultimate healing, HIS will to be done, and peace and direction through the process!!
You are each such precious gifts to us! Thank you for your sacrifice of time to beseech HIM on our behalf!
Saturday, August 6, 2011
B had some clients to meet in College Station. So, we made it a family trip. We stayed with our precious friend Trey & Marci in their adorable home! It's like a perfect little doll house! I wish I had taken pictures, but I completely forgot...they were so wonderful to allow us to stay with them.
|P & Daddy posing with Bevo!|
|First Trip to Freebird's!!|
|You expect me to eat this whole thing?!|
|This is where my Daddy proposed to my Mommy!!|
|Mommy and Daddy in the spot where Daddy proposed! I'm glad she said, "Yes!"|