Billy LaRose Charitable Fundraiser

Sat. March 24, 2012

Breakfast 8:00 AM- 10:00 AM

With Silent Auction & Raffle

*Do not need to be present to win

Silent Auction during breakfast & ends when raffle begins @ 11 AM

Roy City Hope Community Center

5051 S. 2000 W. Roy, UT 84067

Adults $5 Children (under 12) $3

To purchase breakfast & raffle tickets in advance or for any inquiries please call:

Sandi LaRose (801) 782-1005 Becki Porter (801) 675-1336

Mandi Platt (801) 695-7757 Angie Jones (801) 388-7723

Jen LaRose (801) 686-2776 Cindy LaRose (801)648-8025

Connie Waite (801) 710-5036

*Donations can be made at any America First Credit Union to the Billy LaRose Charity Fund

February

Once again we went to Salt Lake, Billy had his normal CT Scan and then we went to see the surgeon again. We were nervous because this appointment could be the difference of having a permanent shunt put in or not.

Again, no change in the CT Scan or ventricles, but we were somewhat shocked at the difference in future treatment the doctor suggested. In January he told us if the hydrocephalus never went away even though it is mild, Billy would most likely never recover 100%. He said Billy would probably get to 90%-95%, but with the extra pressure he would never be able to get over that hump. The doctor said the shunt would relieve the pressure and allow him to be back to normal. But after discussing Billy's current Hydrocephalus symptoms, which are fairly mild, he decided he wanted to wait on the shunt. The surgeon didn't feel like the benefits of the shunt out weighed the possible complications of a shunt at this time. He told us to go live our lives and if Billy's symptoms got worse to come back in. I actually hated this advice more than "wait 4 weeks and come back for another CT". Don't get me wrong I don't want Billy to have another surgery and have a permanent shunt if he can avoid it, but I also don't want him to live the rest of his life at 90%. Billy's 38 years old and has a very long life to live. Honestly the doctor telling us to just go and live life like we did before the aneurysm scares me. I'm not usually a worrier, but this advice leads me feeling unsettled. I'm just not 100% sure this is really all over. Billy obviously still has some recovery, but overall he's doing great for amount of time that has past. My gut tells me to be very watchful and stay on top of Billy's symptoms, but I honestly don't know if that is me just being scared or pro-active.

I know there is no way to know for sure what the future holds, therefore Billy may still need another surgery for the shunt, but I have been trying very hard to live life as normal as I can.

In the last 9 months our family has experienced many trials. In May I had back surgery and had a NO bending, pulling, lifting and twisting restriction for 3 months. Logan had an out patient procedure for some digestive issues, then Billy had brain surgery (14 days in the hospital and continued CT scans in 2012). We also just found out Landon our 5 yr. old is probably going to need surgery to get his tonsils removed. Just when I thought I had learned so much from these experiences, I realize I still have so much yet to learn (more patience and stronger faith). I pray for the strength to be able to continue forward and be a good wife and mother. I pray that I will be able to be there for others in their future trials as they have been there for my family and I. I will "Pay It Forward" when given the chance.

I hope this will be one of my last post because that will mean Billy will never need the shunt, but if that is what it takes to make him 100% I will welcome another trial.

Thank you again to everyone who has prayed for us, helped us give our children a wonderful Christmas, picking up the slack at our jobs and church callings, helping with our children and their activities, etc. I could go on and on, but I don't think my words will every be able to fully express my gratitude and amazement at how giving and caring people are! Your kindness will never be forgotten.

January 2012

We were very eager to go to the doctor at the beginning of January to see if the medicine was working to reduce the fluid on Billy's brain. He had another CT Scan and then we went to the surgeon's office after. Again it wasn't bad news or great news. The CT scan showed no change at all in the size of his ventricles, which is in relation of the amount of spinal fluid he has on the brain. Therefore, he still had hydrocephalus, but it had not gotten worse which is was good. The doctor took him off the medicine and told us to come back in 4 weeks. Those were the words deep down I knew he would say, but oh how I didn't want to hear that. I don't mean to sound ungrateful because we are so blessed to have Billy doing as well as he is only being 2 1/2 months post surgery, but watching and waiting is so hard emotionally. There's no closure, no black and white answers. I learned back in the hospital there were no black and white answers when it comes to Neuro, but as I've said before it's still hard to accept the words, "We just have to wait and see."

The doctor did tell us that even if his symptoms don't get worse, but the excess fluid remains, he still may need a shunt. He said the shunt would help him get back to 100% and without it he may only get to 90%-95%. Bill doesn't want to live the rest of his life at 90% so he has somewhat accepted the idea of a shunt, but like I said before, we will just have to wait and see.

The doctor did release Billy to go back to work part time and to slowly work his way to full time. The doctor suggested about a month of part time, but that we would have to be the judge on Billy's progress and tolerance. Going back to work was harder than Billy thought it would be. He is a salesman and has an office. He is mostly on the phone and computer all day, so he thought a half day would be easy. Sitting for a half day wasn't so bad, but the constant stimuli of the computer, phones and trying to process multiple things at once was very difficult at first. Everyone he works with was great and really tried to help him as much as they could. They were very supportive of him leaving half day and going home to rest, which took a lot of stress off of him. As January continued Billy got stronger physically and mentally. He continued to have pressure in his head, but it was manageable and slowly lessened.

December Progress

Well so much has happen since I last updated the blog. During December, Billy continued to rest and sleep a lot, but gradually would stay up for longer periods of time. He slowly gained more endurance and strength and was able to handle more stimuli than before. He began to do some walking like the doctor wanted, but it was harder than he thought it was going to be. He is very strong and determined so he worked hard and by Christmas Day he was able to go to church for the first time since this all happend and sit on the stand. It was a wonderful day.

Thanks to all of our wonderful friends and family we had a wonderful Christmas. Thank you to all of you who dropped off goodies, cards, presents and food at our door and most of all for your prayers. This Christmas was extra special because we felt so blessed to have Billy here with us and that he was making so much progress. I believe that Billy's life was spared because he still has many things left here on earth to do and I'm so thankful our family has been given that gift.

In some ways this whole experience has been a blessing. Once you are faced with such a major life changing event, you view life differently and want to really live each day like it was your last. Life is so precious and can change so quickly. Remember to tell those important to you how much you love them EVERYDAY!!

Follow Up Appointment

So today we headed to Salt Lake and Billy had a CT scan and then we went to see the Neurosurgeon for our first follow up visit since leaving the hospital. The doctor was overall please with Billy's progress. The doctor said he was doing much better than most people at this stage. He said that Billy is no longer at risk for a re-bleed which was really great to hear and that he didn't have any restrictions on how much weight he could lift (If you forgot, when he came home his instructions were to pick up nothing heavier than 10 lbs.) The doctor wants him to start exercising about 45 minutes a day (walking or riding a exercise bike) and slowly begin doing things he did before as he feels up to it. He said he could start driving, but for the first couple of weeks I have to be in the car with him until I feel like he his ready to drive on his own (He said I should treat him like he just got his permit, lol. Now I have 2 permit drivers, Billy and Logan!!) So that is the summary of the good news!!

Now the not so good news is that Billy has Hydrocephalus. The following are details about Hydrocephalus that I got off of a Neuro website which explains it better than I could. "Hydrocephalus is the buildup of too much cerebrospinal fluid in the brain. Normally, this fluid cushions your brain. When you have too much, though, it puts harmful pressure on your brain.

There are two kinds of hydrocephalus. Congenital hydrocephalus is present at birth. Causes include genetic problems and problems with how the fetus develops. An unusually large head is the main sign of congenital hydrocephalus. Acquired hydrocephalus can occur at any age. Causes can include head injuries, strokes, infections, tumors and bleeding in the brain. Symptoms of acquired hydrocephalus can include

Headache
Vomiting and nausea
Blurry vision
Balance problems
Bladder control problems
Thinking and memory problems

Hydrocephalus can permanently damage the brain, causing problems with physical and mental development. If untreated, it is usually fatal. With treatment, many people lead normal lives with few limitations. Treatment usually involves surgery to insert a shunt. Medicine and rehabilitation therapy can also help."

So this explains why Billy still feels so much pressure in his head and why he wants to sleep 12 hours or more a day. Fortunately, Billy doesn't have all of the symptoms, but he has enough that the doctor prescribed a medication that will prevent his body from producing so much spinal fluid. The hope is that if his body doesn't produce as much, his body will then be able to catch up and eventually start reabsorbing the excess fluid. He has to go back in 4 weeks to have another CT scan and then see the doctor again. If he still has hydrocephalus then the doctor said we may have to start considering putting in a permanent shunt. This would require another surgery (nothing as major as before) where they will place a tube in his head and then thread it under his skin down to his stomach where the excess spinal fluid would drain and then be excreted by the body. We are praying very hard that this medicine will work and then Billy's body will begin to work as normal so he doesn't have to have a permeant shunt. Obviously it's not the end of the world and people live normal lives all the time with shunts, but I really just want to avoid this if at all possible. Don't get me wrong I feel so blessed to have Billy alive and well, but this would just be one more thing! The doctor also said he could not go back to work until after our next appointment January 3, 2012 and if all goes well he will still have to start back part time and then build up.

So after today I have mixed feelings. I'm very happy he is doing so well and overall doesn't have any deficits, but I really wasn't expecting the hydrocephalus so tonight I had a little break down. I'm trying really hard to be strong and positive, but I guess sometimes a girl's just got to have a good cry. After 6 weeks of this you would think I would be more prepared, but I really wasn't expecting this because of how good he has done. I will just keep praying and I know my Heavenly Father will get us through this and one day we will look back and be thankful for this growing opportunity.

Updates

It's been a while since I've posted anything for many reasons. First of all, I thought if I posted everyday that Billy is making progress, but sleeping about 12 hours a day it would get pretty boring. My mother went home about 3 weeks ago so that leaves everything for me to do by myself (Oh how I miss my mom, but she needed to get back home. I am so grateful for everything she did for us). Plus I've started going back to work at the dental office and at Kohl's as much as I can and unfortunately homework, school projects, laundry, dishes and night time rituals never stop and with 4 kids you can imagine how crazy my nights are. Needless to say, I've been a little stressed and when night time rolls around I'm so tired that I usually pick sleep over blogging. Then last Thursday Landon woke up with a fever, threw up at 4am and then Karsyn and Paige got it too. (Now honestly, can the LaRose's have anymore fun than we already are???)

So the last 3 weeks or so, Billy has continued to make progress. His short term memory is getting better and he is getting stronger all the time. He's trying really hard to get back into normal life little by little. He went to Paige's basketball game last Saturday and he was glad he did, but he was really tired once he got back. Then Saturday night we decided the entire family needed a break so we all went to the movies. Billy really wanted to go, but hesitated as well. He did end up going with us and he tried really hard to enjoy himself, but it was really hard on him physically and mentally, but it was another step to recovery. One of his big problems right now is his sleeping is all messed up. He sleeps all day, gets up in the late afternoon and then can't go to sleep again until like 4:30am so the cycle continues. It's really hard for him to stay awake all day, but he is trying really hard. His head doesn't hurt that much, but he still has a lot of pressure in it, which is uncomfortable. His other complaint is that his entire body aches. He said it feels like when you have the flu, and it only goes away when he takes ibuprofen. Speaking of medicine, he is doing really good in that regard. He hasn't taken any prescription pain medicine in a week and is managing with Ibuprofen alone. Overall, we're 6 weeks post surgery and he has made amazing progress. I'm very proud of him and I know he will keep working hard so he can finally have is life back!!

Thanks again to everyone for their thoughts, prayers and kind gestures. Also, we have been given a couple of anonymous gifts so if any of you reading this is responsible for one of those, Thank you so much!! As hard as this has been, I have to say we have been blessed in so many ways!!

Updates

Well things are still going well. Billy is making progress and getting stronger each day. He is still sleeping a lot because his head still hurts and his body aches a lot. He feels like time is going slow, but he has made remarkable progress in 3 1/2 weeks. He still says everything tastes like grease except for fruit so he doesn't get too excited about eating, but he makes himself eat something so he can regain his strength. He also remains sensitive to light, sound and touch, but he has been able to tolerate it a little more each day. Overall I think he's doing really good. Tomorrow I'll give you a summary of his cognitive evaluation. Thanks again for all you prayers, thoughts and support.