The Results...

Today we went down to UCLA to get the results from the blood test they did a month ago. Honestly both of us were a bit anxious on our way down. We basically knew what the results would be but you never know if there will be a surprise. I was hoping that the number wasn't higher than we expected but I was also worried about the random chance of the number being low and us having no idea what to do next. So even though we have been waiting for this day for over a year it was still a rough one. 
I know this test probably doesn't make much sense to most of you but I am going to copy parts of an article for you so you understand it a little bit. 
"Genes are made up of the genetic material called DNA. DNA is the code for all life and is made up of a combination of 4 ‘letters’ - A, C, G and T. Scientifically, these genetic letters are called ‘nucleotide bases’.
The HD gene provides the code for the huntingtin protein, and everyone inherits two copies of the gene - one from each parent. The genetic mutation that causes HD is a long sequence of repeated C-A-G nucleotides in the HD gene.
The number of CAG repeats in the HD gene determines whether or not someone will develop HD during their lifetime. Everyone has two copies of the HD gene - one from their father and one from their mother. HD testing involves measuring the CAG repeat length in both HD genes of an individual, using DNA obtained from a blood sample.
The number of CAG repeats in an HD gene can range from less than 10 to more than 120. The average number of CAG repeats is around 17. HD is a ‘dominant’ disease, which means that an individual only needs one of their two HD genes to have a larger-than-normal number of CAG repeats for them to develop the disease.

If both copies of a person’s HD gene contain 26 or fewer repeats, they will not develop HD, and nor will any of their children.

and

If one copy of an person’s HD gene has 40 or more repeats, they will develop HD in their lifetime, and each of their children will have a 50% risk of inheriting the expanded HD gene."

(http://en.hdbuzz.net/027)

This test is the only way that Huntingtons can be officially diagnosed so even though multiple doctors have told us that Curtis has it we were waiting on these test results to confirm. Both the genetic specialist and I had guessed that his number would be in the 50s but we found out today that it is 47. They still do not know much about how your cag number effects when the onset of symptoms will occur but they seem to be related. Everything is so variable in this disease that most of it still seems like we are all just making educated guesses. Hoping and praying that there are more solid answers by the time my kids take this test. 

So we are very glad the test is done so that we can start on the process of getting him on disability. But other than that we only found out frustrating news about the referral to the huntingtons center. They need our primary care doctor to write a referral as well. Curtis has had three appointments that have all been rescheduled at the last minute so we were hoping to skip this. Please pray for wisdom in how to get this part done. We are really wanting to get into the center soon so he can see the physical therapist and anyone else that can help with symptoms. They also have a social worker there that can help us through all the paperwork. 

I wanted to take a moment to say thank you all so much for your prayers and support. We shared a need on facebook this week and were blown away by the generosity of friends and family. We are so blessed! Its amazing to see God using people to help us through this everyday. At a womens retreat I got to attend a few weeks ago one of the speakers mentioned how we need to be there to hold up the arms of our friends during battle and let me tell you, we can feel hundreds of our friends and family from near and far holding our arms up. 

Whenever we have appointments and whenever we can in general Curtis and I like to have fun and try to laugh and be silly together. Our everyday lives are so exhausting and serious lately and we do not get much time together. So here are some pictures of our day... and yes there is always food and coffee involved.

First Visit to UCLA

We finally got to see a genetic counselor and get a blood test done today!!! This is a huge step that we have been waiting over a year for. With Huntingtons disease the only way you can officially be diagnosed it to get a genetic blood test done so they can see what the repeats of that particular gene is. So even though Curtis has been diagnosed by a neurologist we have not been able to start the disability paperwork. All of the insurance companies we have had have made it so difficult to get the test done, so with the help of our parents we decided to pay cash to get this done finally.
So today was the day. UCLA has a Huntingtons center of excellence so they are the best place to go if possible. For some reason you get seen in a pediatric unit so we had some fun with all the fun painted walls(see submarine picture below), it was relaxing for us too. We saw two genetic counselors who were both wonderful and so genuine about wanting to help us. Within a minute of the doctors coming in and without them even talking to Curtis one of them turned to me and asked what I thought the result of the test would be, I said that I was sure it would be positive and he said he agreed. Its always hard to hear someone say that even if you know its true but it was also good to be reassured that he knows so much about this disease that he could see it in Curtis so fast. Because it was so obvious to them so quickly they are putting a referral into the neurology there to see if they will approve our insurance even before we get the test results. So please pray that it works out, we would love to see their whole team that specializes in Huntingtons.
The hardest part of the appointment was the doctor explaining to us that our kids can get it earlier than Curtis because the gene expands when the dad passes it down. I already knew that but it is still super painful to hear it again and to hear it in a way that is telling you to watch your kids closely. I cannot even imagine dealing with my kids getting this as a child. Please continue to pray with us that their brains would be protected and stay healthy.
At one point the doctor looked at us and said you both seem so calm about this, is this just putting on a front for us or is this real? He went on to say that they are there for us in any way we need and that we can be honest about how we are doing. I explained that this is something that we have been processing for awhile so we are not in shock and that we just take it day by day. Honestly we could not even be appearing this calm without the peace that God has been giving us though. Most of you do only get to see the calm and strong side of us but we do have days where we are overwhelmed and scared. There are plenty of days where I do not want to get out of bed and face reality and days where I just cannot stop crying... But then there are days filled with hope and joy and wonderful time as a family.
Now we just continue to play the waiting game... wait on the referral to go through... wait for a few weeks to get the test results.
Continue to pray that Curty's symptoms would slow down. Pray that we would fall into a new normal of him being a stay at home dad while the kids are being home schooled. Pray that I continue to get enough work for us to live off of. Thank you all so much for your prayer and support.

So Much Change

I have failed miserably at keeping up with this blog! I want to update everyone on what has been happening in our lives over the last few months.
We have been living in Lancaster for almost 8 months now!!! That's just crazy to me, life is happening so fast! About 6 weeks ago I started to feel like life was starting to get to a new normal. Everything seemed to be working out. God was providing everything we needed and both of our jobs were going well. I felt like Curtis's symptoms weren't changing much and that we were maybe finally going to get a break from stress. Well that all changed very quickly... A friend told me about some symptoms that she had seen that I wasn't aware of and then Curtis lost his job. I panicked for a couple hours and then thankfully felt great peace that I know was only possible because so many people were praying for us. Since then we have been working hard to get unemployment started(still not figured out) and to get on state assistance so we could make it until we figure out whats next for us. Thankfully with him being home I have been able to work even more than before.
On top of all of that stress Curtis was in a car accident last week while taking the kiddos to VBS. Thankfully all of them were safe but the van was totaled. So now we are also dealing with auto insurance on top of all the other paper work and phone calls that we are constantly dealing with.
Even though all of this has been so crazy and overwhelming, it has been amazing to see God provide for our every need. So many of you, even people we have never met, have stepped up to help us. I could never say how thankful I am for each one of you who has given us money, or brought us a meal, or paid me way more than you should have when I worked for you. It has brought us so much peace knowing that we are not alone through this.
A lot of people have asked about what symptoms Curtis is dealing with so I thought I would share a little bit about that so you know some ways to pray for him. The biggest symptom is not having mental clarity, he is having a hard time focusing and paying attention to details, Its also hard for him to follow directions or remember new things. Another symptom is his balance and gait, its almost like his center of gravity is off so everything looks and feels harder to do, The other main concern is his weight loss. He has been constantly losing weight the last few years and is not slowing down. He has gone down at least another size since last summer and even had to take off his wedding ring last week because it had gotten to big(his original one had already gotten to big a few years ago). He eats constantly but his body just burns the calories too quick. From the research I have done it seems to be a big concern for doctors, they want them to be at a good weight before the symptoms get worse so please pray that he would be able to keep some weight on.
Other prayer requests would be that we would have wisdom about what the next steps are to make sure we are financially secure. Also pray that I would have more clients than I will know what to do with :o) Pray for the kids as they keep having to go through so much change. I have been having a hard time emotionally dealing with all of the stress and it really takes a toll on my body. So pray for peace and joy and energy for me.
Oh and Timm is away at his first camp so pray that he stays safe and learns so much about his relationship with God. And pray that we don't go crazy without him here.
Thank you all for the continued prayer and support, it means so much to us.

4 months!

We have been living back in Lancaster for 4 months now! I feel like it has gone by so fast because we have been so busy. I have done so bad at keeping everyone up to date on our lives, I'm so sorry guys! So the biggest news is that Curtis has been working at his new job for 2 months now! He is really enjoying it. The hours are perfect, which has been strange for us to get used too. It is a much less stressful job than his last one so its just what the doctor ordered. We are so thankful that God worked it out perfectly for him to get this job!

Even though his job is perfect it has still been a huge adjustment as a family getting used to us both working. He is making about half of the money he was at his last job so on top of learning how to live frugally I still need to be bringing in a big chunk of money which means working a lot. Once again God has blessed us so much by bringing many families to us who need me to watch their kids during the week so I can be earning money and being with my kids. And the times I work out of the house my awesome sister watches the kids so they can still be homeschooled. So even though money is tight in a way that we have never experienced before, God is providing for our every need.

Even though the reason for this move was very stressful I really thing that the timing was perfect, God had it all planned out and we will continue to trust that everything will continue to fall into place. Curtis has gotten the opportunity to join the worship team at our church which he hasn't been able to do for the last 8 years because of his schedule. Its such a joy to see him getting to do what he loves, makes me heart melt. The kiddos have been making a lot of friends through church, homeschool park days, and awana. Timm loves awana so much that he has almost finished two books already and is quoting scripture pretty much all day. We also decided to adopt two puppies this week so the kids are very excited about that.

I have gotten the opportunity to join a birth network here which has given me a chance to get to know some amazing women. A birthing center just opened here as well which is so exciting and will give me some chances to start teaching classes and leading support groups ect. So even though the doula business hasn't grown super fast I feel like its starting to pick up. There are a lot of new babies coming in the next couple months and I'm so excited!

You can continue to pray that we can be making enough money so that its not a cause of stress. Pray that schedules will work out so that I can still be making the money we need but also getting to see Curtis enough. Pray that we continue to adjust to the life of two working parents, specially that the kids can keep doing well through it. Pray that Curtys health would continue to to not just stay the same but would get even better. Thank you all so much for your continued prayer and support through the last year, it means so much to us!

Merry Christmas and Happy New Years to all of our friends and family! We had a very special Holiday season this year because Curtis actually got to be home for all of it! Normally he works on Christmas so it was really nice to enjoy family time this year. He even got to sing in the choir at church, loved watching him join in something new. It was also a huge blessing to get to spend time with extended family. It had been a long time since I got to spend Christmas day with my dad and sister. One other neat thing about this Christmas was getting to celebrate in the house I grew up in. Decorating in this house brought back so many great memories of my mom. 
As we enter into a new year though it is hard to be hopeful. Most years January brings about renewed energy and hope for an even better year than the one before but I will be honest I am struggling with that this year. We have been in Lancaster for two months now and Curtis hasn't found a job and my Doula business is starting very slow. There are moments when I wonder if we made the right decision to move down here so quickly. But Curtis is amazing and is as optimistic as always and is always reassuring me that we made the right choice. God has provided for us so far and I know that He will continue to do. 
I know that I need to look at all the positives in our lives. We are truly so blessed even though we are going through this trial. We have three kids who are so adorable and healthy and bring so much joy to us everyday. We have supportive family so we know we will never be hungry or homeless. We have found a great church family down here. And Curtis is feeling really good and has not had any symptoms worsen. 
I always find so much comfort and encouragement through worship and Christian radio. So many songs speak to my heart when I am having a tough day. One in particular is the song "Just be held" by Casting Crowns. I am going to share some lines of it, hopefully it can encourage you if you are having a tough week or month as well. 
"So when you're on your knees and answers seem so far away
You're not alone, stop holding on and just be held
Your world's not falling apart, it's falling into place
I'm on the throne, stop holding on and just be held
Just be held, just be held"

"If your eyes are on the storm

You'll wonder if I love you still
But if your eyes are on the cross
You'll know I always have and I always will"

Please continue to pray that Curtis will find a job. Also pray that we would learn to work together now that roles have changed. Its hard for Curtis to get used to being at home with the kids all of the time and its hard for me to be away from the kids so much. So pray that we can both put in extra effort to keep life normal and joyful for the kiddos even when we are tired and stressed. Pray for our continued health, I keep getting sick and I really need to stay healthy to keep working. Pray that I would see more hope this week and run to Christ alone with my worries and fears.

Thank you all so much for letting me share my feelings and prayer requests!