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Thursday, September 25, 2014

There's Something in the Air

It's been a few months since I've posted a blog. I prefer to reflect on my situations instead of post in real time, I think your perspective is clearer or at least mine is. I'm not quite ready to relive our  emotions of surgery yet, but I do have some experiences I would like to share.

First of all, having a sick baby, who is your only child, is way different then having a sick child with 2 other children to worry about.

When Rebecca was born we were offered a room at the Ronald McDonald house. We declined it for multiple reasons. One of the reasons was that I felt strongly that since I have a home in Tampa and there are many families from out of town that could use that room, it would be selfish of me to take that room. Now looking back it was the best decision since Rebecca was in the NICU for 3 months, but I'm not sure that I agree with the reasoning I used back then.

This time around the first thing I did after Rebecca's surgery was scheduled was call the Ronald McDonald house. Knowing we would be in St. Pete for about a week and 2 littles that still needed mommy and daddy, I knew this would be the best option.

Fast-forward to July 16th.... Rebecca was out of surgery about 4:30pm and it was going to be a long night in the PICU. Hannah and Leah were only allowed to visit for a short period of time in there and since Leah was still nursing we couldn't ship her off to grandma's house. The Ronald McDonald house was right across the street. We could walk there. I can't tell you how much this blessed our family. Each night Josh would leave with Leah and they would sleep at the RMD house and I would stay at the hospital with Rebecca. He would bring Leah back early in the morning so I could nurse her. This was our routine for our entire stay at the hospital.

During the day I would go over to the RMD house to take showers and freshen up. This is when things would change for me. There is something in the air at the RMD house. A heaviness, a sadness and also a feeling of support. The families that are staying there are not on vacation. Although the rooms are very "hotelish" and nice, when you are there it is very evident you are not at a hotel. It is quiet and somber. Every time I stepped foot on the property of the RMD house, the emotions would start to well up in the pit of my gut. I fought tears every time I was there. Sometimes in the shower I would cave into my feelings and cry. The strange thing was, I wasn't emotional about Rebecca's current situation, I was emotional about the past, the beginning. I couldn't believe we were here 12 years later. She made it! She is alive! All of those things the doctors told us could happen when she was born, she had overcome. It was nothing I had done, only what God had done. Every time I walked up to RMD house I fell at the foot of the cross, grateful and thankful that God loved Rebecca so much. But I also accepted what could have happened and that is why I cried. As a mama you have to be strong. You can't sit around and cry because your baby might die. No! You have to fight! Up until this surgery I had never allowed myself to feel the pain of a mother who might lose her baby. It was sad....that's all I have to say about that.

Sunday, July 13, 2014

The Countdown Begins

Well tomorrow is our hospital pre-op at All Children's in St Pete, then two more days until surgery. This past week we've been at youth camp with our church in Panama City Beach, FL. It was great, Rebecca was able to open up to her peers in our church, being vulnerable and sharing her feelings and emotions. We had an amazing week but now it's getting real. While we were at camp I could keep my mind occupied on Rebecca having a blast, being hot, horrible camp food, and anything else other than surgery.
Soooooooo what now? Do I break down, cry, feel sorry for my daughter for this horrible thing she is facing? Should I feel sorry for myself for having to walk this path that no mother wants to walk? Do I feel bad for my other two children who will soon be somewhat neglected during the next few weeks? Maybe I should be upset because my husband is taking time off of work unpaid and I should worry about the bills. So many options to chose from but yet today my pastor reminded the congregation that when you are faced with difficulty, you have a choice. You can use it for God's glory or have a "woe is me" attitude. I know I've said this before, but I feel led to say it again, "God is faithful, He is in control and He will be there for us no matter what happens. I will not have a spirit of fear!"
For those of you that don't get it I will just say this, "Stand with us in faith that God is in control and if you have concerns offer those concerns up to God in prayer." I'm an open book and I don't mind questions and curiosity, but as far as fearfulness and worries.....ain't nobody got time for that!
So logistically here's the plan for those who are interested. Tomorrow we have pre-op, they will do blood work and give us a tour of the hospital. They will determine Rebecca's blood type in case she needs a transfusion on Wednesday. Hopefully tomorrow they will tell us what time her surgery is on Wednesday. We are hoping she is first so please be praying for that! My dear friend Rachel has set up a meal schedule for when we get home from the hospital. Here is the link if you would like to sign-up. Search THARP and password 9212

Wednesday, June 18, 2014

Research queen removed from her throne


The Lord God Almighty has removed the research queen from her throne. No one has been chosen to take her crown. 

Normally I would call myself the research queen. Before I buy something I will surf the net to find every review ever written on the product. Not only do I read all the reviews, but I usually read the bad ones first. I want to know why someone didn't like this product. You see, I figure if I can accept the very worst faults in a product then I can consider buying it. Next, I post on social media asking for references, "hey mom friends, ever use this or that" "ever eat at this place or that place". Finally, I talk to my closest friends and family members about my decision (usually by this point I've already made up my mind, I just need more reassurance that I'm right). 

Well here we are faced with this giant of a surgery and God has told me not to research. I mean, of course I did the basic research to fully understand what the surgery is, recovery and all that. What God told me was, "don't worry, I've got this". I didn't understand at first, I know God's got this, but he needs me to map out the perfect plan right?!? Who knows how to better care for a child than it's mother? So I prayed and waited. I waited to research anything. I waited until God told me it was ok. He is trying to show me that the reason I do so much research is because I need to be in control so I don't get bamboozled. That's really what it comes down to. I'm afraid that if I don't find the right doctor to do this surgery, and something goes wrong, it's my fault. I can't be liable for that!!! As it turns out, I'm not liable. With my husband we've prayed for God's direction, He directed us, and now we just have to have faith and trust that God has got this. So I'm very pleased to announce that I have been dethroned and I humbly bow down at the feet of my Abba Father. 

Sunday, June 15, 2014

We are not promised tomorrow

The surgery Rebecca will have is a spinal fusion and growing rods. Basically they will put rods on either side if her spine and they are screwed into her spine. (I will not post pictures as this may be disturbing for some people to see but you can google if you're curious) once the rods are in place they will fuse the spine to be straight. The doctor is hopeful that he will only have to fuse the top curve but he may need to fuse the bottom curve too. He won't know until she has her ct scan in a few weeks. This will greatly reduce her flexibility if he needs to fuse both. Her surgery is schedule for July 16th at All Children's hospital in st Pete. 

As you can imagine, it's been a count down since the day we scheduled the surgery. Rebecca will have a very long recovery which could take over a year, so we are trying to do as many things as posible with her before July 16th. We are seizing the day! We are not promised tomorrow so we are focusing on today. Needless to say my house may be messy for a while and my laundry may get piled high because those are just not our priorities right now. 

One thing I also must make very clear on this matter, we do not have a spirit of fear. Rebecca has always belonged to God first and we know He loves her more than we could imagine. We have complete faith that God is in control and we know that no matter what curve ball life throws us, God's there to catch it. 

Friday, June 13, 2014

How do you stop time?

The long awaited and unavoidable doctors appointment was finally here. Earlier that day we were at a friend's house doing some end of the year American Herirage Girl stuff. I remember looking at the clock the whole time, praying and hoping time would stop so we didn't have to go. Maybe the doctor's office would call and say that the doctor had an emergency and needed to reschedule. At one point my friend said "aren't you going to be late"? That was my clue that the rapture wasn't going to happen and I was going to have to take rebecca. So I went...reluctantly...but I went. I knew what he was going to say, but I tried to convince myself that maybe it wasn't as bad as I thought. 

So as usual, the first thing they do is take x-rays of Rebecca's back. Then we sat and waited for the doctor to come in. For the past three years Rebecca's curves have stayed pretty much the same. Her top curve around 36 degrees and lower curve around 32 degrees. The doctor has told us for years that if her curves reached over 40 degrees that we would need to operate. Moments later When dr neustadt came in, he informed us that Rebecca's top curve had significantly progressed. It is now 60 degrees and the lower curve is 42 degrees. My heart sank. I looked at rebecca, she looked devistated. Remember how earlier I wanted time to stop, well it did. We have prepared ourselves and rebecca for this day but it didn't matter now. It's here and it's real. 

Monday, June 9, 2014

One out of ten

I've been trying to stay in order of events while catching you up on the past 12 years. But I felt the need to speak to the title of this blog, "one out of ten".

Once we decided to move forward with Dr Q's plan in doing the experimental procedure, he explained in full to us his mission and where we fit in. The state had approved funding for Dr Q to do 10 of his experimental procedures, and they were all to be completed within a year. Rebecca was to be baby #7 and baby #6 was a baby from across the country that had traveled all the way to FL to receive treatment. Up until now, the first 5 babies did not make it. One baby had survived the procedure and survived delivery but later died at 6 months old. Baby #6 was due in June and rebecca was due July. #6 survived the surgery and Dr Q was very hopeful that the baby would be his first true success. Sometimes The Lord giveth and sometimes The Lord taketh away. Unfortunately baby #6 didnt spend time here on earth, and is now with it's abba father. 

"I have not given you a spirit of fear..." 

Finding out about baby #6 was scary, but we knew that no matter what happened God was in control. We clung to our faith and As you know now, rebecca is alive and our miracle! 

Baby #8, #9 and #10 did not survive. 

Rebecca is the only 1 out of 10 babies alive today. 

Sunday, June 8, 2014

Mom's intuition

Since the time rebecca was diagnosed with scoliosis up until her last x-Ray in 2012, Rebecca's curves have stayed about the same. The dr has told us for years that if her curves progressed over 40 degrees we would have to consider having the spinal fusion. 

August 2013

I'm 8 months pregnant and trying to not spend any money because we have a baby coming. Of course right when you try to save something always comes up. I remember it was a Sunday, church was starting in 15 min and rebecca still wasn't dressed. Everything she put on didn't fit, we were both getting frustrated so I said "put on this dress and we will buy clothes after church". Rebecca had gone through a major growth spurt. So we had to go buy new clothes. While trying clothes on, they were fitting funny, mostly the shirts. Call it a mom's intuition or whatever you want but at that moment I knew it was not good. 

I didn't speak about it to anyone. Not even josh, and we usually talk about everything! I didn't want it to be real so I ignored it. I chose to focus on everything but Rebecca's scoliosis, mostly on our new baby Leah, homeschooling, AHG, the holidays and pretty much anything that would distract me....even Facebook. We were supposed to go for Rebecca's next follow up in January, so in December I reapplied for Medicaid for Rebecca because I was afraid of what the dr would say (she had Medicaid as a secondary insurance for the first 3 years of her life because of all of her medical expenses). Well it took forever to get approved because I kept sending in the wrong stuff. I mean seriously, I'm college educated but I couldn't figure out the Medicaid system. She didn't get approved until April so we waited that whole time to make the apt (at least that was my excuse).