Monday, April 28, 2014

Planting Season!

It's here! Planting season is beginning and I am so excited about it! On and on our winter went and even this April has been so cold and windy but nonetheless we are getting some things planted because it's time; hallelujah! This weekend JW and his dad both received their new apple trees to plant on the land and start a mini orchard here behind our house. We have 14 trees between ours and theirs all planted in pretty rows. I feel like Anne of Green Gables!! It's so exciting. I know that we probably won't get apples from these trees for at least 2-maybe 3 more years but having them started is something and I am dreaming of the days when we will have fresh apples to make pies and sauce oh my!

I don't have a picture of our pretty orchard yet because in the midst of all that the boys had to take down some pretty large Chinese elms and those are laying all over the yard so I didn't want to try to make the track out to the orchard with my bum leg having to hop over logs all over the place too. So the pictures are coming soon.

I hope you all are enjoying the beginnings of your spring time too. May you be blessed with a bountiful harvest season!


Wednesday, April 23, 2014

Home Is Where You Rest Your Feet

The title of this post comes from an old sign my mom had hanging in her house years ago and I love it. It certainly applies to our home these days.

Monday was one of the hardest days of our lives. Period. It's commonplace to remove the depth electrodes at the bedside these days rather than taking the patient back to OR because they don't use general Anesthesia for the procedure either in OR or at bedside- just a local via a shot to each electrode site before removal. During my stay I had numerous nurses comment that they had not seen someone with so many depth electrodes as I had before. I had 20 total-10 on each side of my brain. I'm not sure if this was the major factor in making the removal torment or if it was my lack of response to the local but either way I was given the local, which I felt each pierce and after only a couple I passed out cold and a "White" code was called. Extra nursing support was called with an AED (thankfully they didn't have to use that!) and the Dr. immediately started pinching me hard to get me to wake up. I did eventually come to and was able to make it through the rest of the procedure although it was the worst pain I've ever been through in my life and I would take 100 labor pains over that any day! My poor husband was scared to death and we both were completely wiped out by the end of it.

The added movement I gained from not being tied to my electrodes was something to be thankful for out of all of that. I do continue to have trouble using my right leg but we are hopeful that it will improve in the coming weeks as I am up and about more and more. For now it just feels like I have a numb leg that only has partial strength…weird. The Dr.'s said that it's most likely because I had a small bleed during the placement of my electrodes and that it sometimes happens but typically straightens itself out in a couple of weeks. They are recommending physical therapy if it doesn't improve in a couple of weeks.

Yesterday's reunion with the kids was so great! They ran right to us and were cuddly and all smiles! Yay!! We have missed them so so much and it's been great to be home again with them. I definitely need prayers for strength though because right now I am not strong enough to take care of them alone and that is something we will need eventually. I know it will come and until then I need to give myself the time to heal but it really is difficult to be home with them and not be able to do things like take them upstairs to bed or change their diapers. :( They are being so great though and giving me lots of hugs and kisses which is so sweet!

 Today we got to watch the kids play outside in their new playhouse. They absolutely love being outside so we bought this for them before we left and my dad set it up so they would have something fun to play with outside while we were gone. They love it and there are "girl"and "boy" features that they both enjoy like a tool bench and a kitchen! So fun!
Here are a couple of catch up pictures for you from our journey. I had some trouble getting pictures on the blog from my phone so here they are for you. :D

The first day after surgery…look at all my wires! :D They did eventually wrap them up so they weren't all over the place. And yes I was still out cold from Anesthesia! I pretty much didn't remember anything from Wed. to the Saturday after Surgery…Haha! I'm a little touchy when it comes to anesthesia. 

FaceTime with the kiddos! The best moments of our time there was spent chatting with the kiddos. They did great on the video chat too! Waving and blowing kisses! 

My stimulator. This little gadget sends small electrical currents to my brain to stop seizures. This is how they know that I respond well to stimulation and it makes me an ideal candidate for a Deep Brain stimulator.
So moving forward we are waiting for some more information about the Deep Brain Stimulator for me. Currently the DBS is used most commonly for Parkinson's and not as common for Epilepsy. I was getting a couple of different stories from a few different Dr.'s and was under the impression at first that they had NEVER EVER put a DBS in for Epilepsy at all but that isn't the case. It has been done before but it's very rare. So I would not be the first one but I would be one of a few who have the DBS for Epilepsy and we would need to get the stimulator donated by the maker and we would also need our insurance to get behind the procedure. My Dr.'s are working on these things and we are waiting to see what happens. Thankfully, our Dr. has friends in the FDA department and they have given their approval for it so we've crossed that path already so now it's just a problem of the device and procedure costs. We'll update you on what we find.

Hope you all are well and enjoying the spring.


Saturday, April 19, 2014

Cleveland-Week 2

Well life got a lot busier here in Cleveland since the last update. After finally getting over 3 days of sickness from the Anesthesia and morphine from Surgery we finally were able to get me of my meds for my Epilepsy and get the show of seizures going. From Friday 4/11 to Today 4/19 I have had 9 concrete seizures and a lot of other seizure activity on my EEG. These seizures have given the Dr.s a clear idea of where exactly my Epilepsy comes from. We've realized that my seizures come from my Left temporal brain area knows as the Hippocampus which stores the brain's language and memory functions.

What does this mean?? Well, in a nutshell, I am not a candidate for resection surgery because they cannot remove the hippocampus without leaving me with massive memory problems &/or language issues.

So since they found this they have been stimulating my brain with small electronic currents for 3 hours on\3 off since Thursday 4/17. So far since then I have only had 2 seizures, both happened during the time I was not being stimulated.
The wires coming from my head. 

Apparently I am a very interesting case because I have some seizure activity on both the righ and left sides of my brain though most of them are coming from the Hippocampus. Adding to my 'strangeness' is the fact that my brain has been very responsive to the stimulation despite my seizures coming from 2 areas.

The type of treatment that is being suggested for me going forward is to have a deep brain stimulator put in my body that would give me enough stimulation to reduce my seizures significantly if not completely. The issue with this is that the stimulator right now has never been used for Epilepsy before and it is not FDA approved. This type of stimulator has been used for people with parkinsons but not for Epilepsy so if I were to have it implanted I would be the very first person to use it for Epilepsy. While that is exciting it's also a very expensive option right now-one that we would need the maker to consider donating one to me because insurance will likely not cover any of it. One of these stimulators is in the range of $80,000. The Dr.'s are positive that I could probably get a stimulator donated at some point down the line because of the curious interest in developing it's usage for Epilepsy.

Moving forward for us right now is going to be surgery on Monday 4/21 to take out my electrodes and we will probably be able to head home on Tuesday. While JW and I remain very thankful for this oportunity and the answers that it has given us we remain completely excited to go home. We are growing very impatient for Home and that has been the hardest part of being here.
Pictures of our kiddos are flooding our room and giving us something to smile at and look forward to!

Right now we just need patience for a couple more days of testing and the physical discomfort that I am having because of staying in bed for 14 days.

We thank you very much for the prayers that are going up for us because we are feeling God's great strength through this and we marvel at how well our children are doing as they are separated from us.  :) 
I look forward to giving you the next post from home but until then, thank you!

Blessings friends, 

Sunday, April 13, 2014

Cleveland- First Week

After the appointments of Monday and Tuesday JW and I walked over to the hospital full of readiness. Unlike all the prevous appointments, getting admitted for the OR was quick and well organized. The Dr.'s all have classes on Wednesday mornings so right on the tick of 8:30 the floor of people waitinig for surgery was infultrated with hundreds of Dr.'s and Anesthesiologists flooding the waiting bed sides ready to take back their patient. It was an overwhelming apperance of men and women who were like silver bullets ready to do what they were made to do and all at the same time lacking most of the human giftings of knowing how to actually communicte what they do. In the bed it really doesn't matter if they can have a funny bone or the ability to talk to other only matters that you know they are a gifted bunch and you trust them to cut you in the right place. :D

I had a wonderful team who treated me well and successfully placed 20 depth electrodes into my brain, 10 on each side. I really don't know what happened from the time they took me back Wed. at 8:30am to Thursday morning when I finally woke up in the Electronic Monitoring Unit (EMU). Thursday-Saturday morning were horrible because I was sick from coming off the anesthesia and I was still adjusting to the massive tail of gauze and wires I now had.

Saturday-my nurse was wonderful and cleaned me up and helped me get in real clothes. I started to feel much better by Saturday night and suggested to my team that I was ready to try sleep deprivation to get my seizures going. We did that by going to sleep around 3:30am Sunday morning and then we slept until 8:00am. This did what it was meant to do and today I've had around 3 concrete seizures and some other 'seizure trigger spots' on my brain scans. We're so thankful for this breakthrough! We will probably go to sleep a little earlier tonight and try sleep deprevation again Monday night.

OK enough of that boring stuff! I miss my kiddos like crazy and we've been able to FaceTime with them a litte while we've been apart and that is so fun. Here are some of the cute photos we're getting!
Anders got his 2nd haircut! He looks so so old! 
Joline loving the outside playtime!!

Grandma gave us cupcakes!!

Anders saying goodbye to cousin Fitz with high fives and hugs... LOVE! <3

Blessings friends we are so thankful for you! 

Tuesday, April 08, 2014

Cleveland Days 1 & 2

Welcome to Cleveland!

The last two days have been filled with waiting rooms and a lot of walking around and getting settled into the UH campus.
Monday was Pre-Op workup, admissions, and an MRI. All went fine with the added bonus of waiting over an hour for both the pre-Op and the MRI... :) Gotta love the hospital timeline.

We finally settled into our hotel for the night and were grateful that they have a full service restaurant in the lobby so we could relax and not go anywhere. The hotel is literally a stone's throw away from the hospital so this morning, rather than get our car out of Valet, we enjoyed a sunny walk over for more appointments.

Today's appointments were with the Surgeon and the Neurologist, Dr.'s Miller & Luders. Both Dr.'s were very good at explaining everything and preparing Jared and I for tomorrow's surgery to place the electrodes.

We did find out that they will have to shave my whole head...I thought it might not have to happen but because I will be having electrodes on both sides of my brain they will shave the whole thing. SO today I bought this...

This is a head wrap...cute huh!? :) I don't think I can be comfortable walking around with just bald and since I will have bandages to cover for a while this will help. What do you think? I think I'm going to get a few hats too that are specifically for bald heads, just to make it easier. Plus, a girl can't have just one accessory right! ;)

We ran into some trouble with our insurance company when we were at the office today. They apparently were having some sort of difficulty understanding what the procedures were for and therefore were unwilling to approve them. Jared and I were not terribly concerned because we knew that if God had brought us this far and had cleared the way for us that He certainly could get this issue resolved for us. We sent out a request to our families to pray and for those of you who heard about it as a result and did pray, thank you. God does what he wants and he knows how to move things into the right place when we need them. There was a Dr. on staff at our insurance company who heard about our issue and was able to step in to help the agents understand why the procedures are necessary and they approved my surgery and monitoring stay before we left the office this afternoon.

So now that the rest of the evening is free JW and I are planning on having a nice evening together before the crazy starts tomorrow. We have to be there by 6:00am with surgery starting somewhere around 8:30am.

We are so thankful for this opportunity and we're thankful for you're support. We will update you as we can.


Sunday, April 06, 2014

A Bump In the Road...

…But still making our way.

So in the last post I told you that Jared had developed some kind of nasty cough; well that cough is bronchitis. :(

He reluctantly and thankfully went to the Dr. today to get checked out after almost a week of coughing and poor sleep. He's on medication now and will be able to take at least the antibiotics all through our trip down to Cleveland. He will, however, have to stop taking the cough medicine they prescribed while we travel as it has Codeine in it and he isn't allowed to operate a vehicle if he's on that. So that would leave us with 2 non-drivers and in this case-I might be the better choice for a driver. Ha! ;)

SO at least the mysterious coughing has been diagnosed and is being treated so that we will not infect anyone else. I'm thankfully not feeling sick at all even after a week with this guy! That's got to be a first; I'm ALWAYS the sick one!

Thank you for your prayers! JW and I will be off the grid tomorrow as we plan to spend the day soaking up our little ones before we take off.

Thursday, April 03, 2014

Packing & Pony Tails

Cleaning. Laundry. Phone calls. This has been my week. I'm so thankful that spring is finally here because these kiddos have been aching to get outside and play and now they finally can! Jared's mom was able to find the kids some rain boots to splash around in the mud so we've taken them outside a few times this week when it was nice to let them get their energy out and they absolutely cannot get enough of it. Joline literally sits down and cries when we bring her back in! :D

I love love that my kiddos enjoy being outside so much! The winter was so long and cold that we didn't even use their sleds until March and even then we only did that maybe 3 times… Ha! I'm laughing just realizing how ridiculously long this winter was. BUT hey! We all survived and we'll have things to complain about when the weather is in the 90's too I'm sure. :D Well, maybe we can take this winter as a reminder to be thankful for the time when we can get out and do what we want; even if we are sweating as we go along!

"Please can we play outside now!?" :) 
Pig Tails and Pony Tails! Oh MY!
Joline, at 16 months finally has enough hair to be pulled back and while I'm so excited about it because it looks super cute, I'm realizing I need a lot of practice in being a mom of girls! I'm really bad at doing hair and making it look cute. :D Well, one pony tail at a time I guess.

So JW and I are not quite packed but we are almost ready for the big trip…well, sort of. I think we have everything in place as far as paper work and medical items go. The rest I'm sure will fall into place as we go along. JW caught some kind of nasty cough this week…YUCK! So I've been trying to get him to drink water like crazy and take meds and such to get him better before we go. :( The trick is I can't get sick in the process… Hmm. I always get sick! 

Hope you are enjoying spring!