Holding His hand.....

Jesus and I are on quite the journey! Since finding out that we had alport syndrome I have been holding my breath wondering when and if I myself will face kidney decline.
Yesterday was a big day for me, I had scans on my kidneys (to check for problems) and neck (to check for any cancer recurrence). I also had blood drawn to check kidney function and cancer markers. Good news is my kidneys are doing well. Other than a little protein in my urine along with the blood, my kidneys are doing their job still. I realized I had been really worried that I was going to find out my kidneys were already failing. I am not ready! Not that I will ever be, but I just want a chance to be healthy and move forward.
Now, since I have had all of that checked, (pending my cancer labs) I just want to focus on health and life!
We are still working on our property, there have been ups and downs, but we are working hard and moving forward as often as we can (at least every weekend.)
The other thing I am working on is a larger lifestyle change. The only treatment or way to delay kidney decline in my son and myself is to concentrate on a good healthy diet and exercise. I bought a great book on kidney disease and diet that includes meal plans, so I am trying to follow it to the T.
Check out my instagram for more udates. =) Seminarynurse

Getting closer to God

Well, these past few months have  been a bit of a trial. Sometimes it's hard to understand why life takes the turns it does.
My daughter was finally assessed by a child psychiatrist. The results were not what I was expecting. I I had it suggested to me that she may be on the spectrum. But the psychiatrist didn't think so. After a few sessions we were told that our daughter has ADHD and generalized anxiety disorder in addition to her sensory processing disorder and dyspraxia. These were diagnoses we already had. What was new was the way that the psychiatrist discussed it. In her words, my daughter is "severely disabled" by these diagnoses. The psychiatrist actually asked if I wanted my daughter to be able to live independently as an adult. I had never thought about her behavior or challenges as disabling. I guess I am just used to her.
So, now we are on a new plan. We are considering medication for both the ADHD and anxiety. It seems the challenges of dealing with the sensory processing while her mind is racing from the ADHD and anxiety is much more of a challenge than I every imagined.

Then there is my son. We just found out he has Alport syndrome. It is a genetic disorder that effects the kidneys, eyes and ears. The statistics are not good. 50% of boys with this disorder will have kidney failure by age 21 and the rest by age 40. In addition, many if not most all, also experience profound hearing loss and eye abnormalities. So, if that's not enough, since it is genetic, it is carried by the mother. So, my mother has the gene as well as myself and likely my oldest son as well. So we are also at significant risk for kidney failure. The only real treatment is a kidney transplant.

I am sure I don't need to tell you that this has been a challenging and somewhat scary time.
Our future is uncertain.
But I was reminded last night what I heard from God during my cancer battle 3 years ago. He told me that He had set me aside, for a time to get closer to Him. That my cancer was a time to realize that He is all that I have and really all that I need.

Last night as I was thinking about my sons and their future. I felt that I shouldn't look at this as a curse or a bleakness in their future, but as an opportunity for them to get drawn to Him.

A grand lesson in being set apart and getting to know the Lord in an intimate way.


Well, it's been a year since I started Seminary. It is hard to believe it has been that long. Looking back on the past year, it has been interesting! I wasn't sure what to expect when I started all of this. There were a few times I thought I must be crazy! Here I am, homeschooling my two children, working weekends as a hospice nurse, ferrying my kids to doctor appointments for their various needs and managing a household. Oh, and lets add graduate school!

But you know what? It was such a blessing! Yes, there is ALOT of reading, and yes there are ALOT of papers to write. But each book I read or research I conducted blessed me fourfold! There is just something so wonderful about immersing myself if God's word and reading books of people who focus on God for a living! It was just amazing.

So, now, things have changed quite a bit. For one, summer is here so we aren't doing homeschool right now.

Second, I recently resigned from my position as a hospice nurse. There are a few reasons for this, the increasing needs of my daughter and the fact that we are moving out of the area this summer. And lastly, I am busy packing up our house for our upcoming move.

Looking back on the past year, I am just thankful to God for being with me through it all. I could feel His hand guiding me and showing me things that really opened my eyes. I also can see Him guiding me and forming in me a burden for His children. Things are all coming together. I am so excited to see how the next year will go and see where He is leading me.

When I start back up in the Fall, I am a bit nervous as I will be taking Greek. I have never learned a second language before so this will be a challenge, but I will push through!

Also, we will be in our new house on our property. Our financial situation will have changed as our land will be paid off and we will be off grid. Also, I will begin to work on and start our farm. We plan on having chickens, sheep, rabbits, lots of fruit trees and veggies.
So, it seems we are on the verge of a whole new world!

I truly believe that God has a purpose in all of it. I have seen inklings of His work in the areas of special needs ministry and what He has in store for us in Goldendale. I will keep you posted!

finding balance....

Finding balance is something I struggle with. Especially with two kids who have special needs. Just the past two weeks we have had 5 or 6 medical appointments between the two of them. In addition to this, I am just starting a new term in Seminary. As the needs of my kids increase I have thought about whether going to Seminary right now is practical or makes sense. As anyone with special kids knows, all of the appointments, therapy, schooling etc. can quickly take up most of your time.
I thought about it and came to the conclusion that when God called me, He knew what would be going on in my life. He took all of that into account. So I can trust that He will equip me with what I need to be able to be successful in Seminary.
The other thing is, that with the exception of the really LONG papers due, Seminary just blesses me time and time again. I find myself really enjoying and being fascinated by what I am learning. I have this hunger inside to know and understand the Bible, Jesus and how to share this message with others. So, I will keep going. I will trust the Lord and know that He is walking beside me throughout this journey.

Getting closer to an answer?

Well, I finally feel like we may be making some progress on helping my daughter. She has suffered with constipation and stomach aches for most of her little life. At times it has been very bad, with her doubled over crying for hours.
We have seen many doctors and had many tests, all with no results that explained what is going on. She has had an egd, ph probe, many blood tests and on and on. About 5 years ago I asked if they would do a test for SIBO, which is Small Intestinal Bacterial Overgrowth, but was told that her symptoms didn't fit so no, they would not test for it. I trusted the doctor, I moved on.
Last year I brought up her stomach aches again with her pcp and was told that she had all the tests possible and we would probably have to find out what the problem is on our own with diet. I had almost given up. (WHAT IS SIBO?)

 Small intestinal bacterial overgrowth (SIBO) refers to a condition in which abnormally large numbers of bacteria are present in the small intestine, while the types of bacteria found in the small intestine are more like the bacteria found in the colon.
Small intestinal bacterial overgrowth (SIBO) is also known as small bowel bacterial overgrowth syndrome (SBBOS).

Well, this year, we have different insurance so we had a different pediatrician. Again I brought up her stomach aches, she asked if we would like to touch base with a GI doctor one more time. I thought about it and said sure, but asked that we see a different one than we had seen before so we could have a fresh set of eyes on the situation.
 A few weeks later, we saw a gastroenterologist. She went over my daughters history, and we talked about putting her back on meds for her constipation and I tried one more time to ask about SIBO. She said she didn't think that was the answer, but agreed to do the test anyway if I wanted her to. So I said yes, let's do it, if nothing else, we can rule it out and I will finally give up looking for an answer.

Well, yesterday we had the test done! She had a hydrogen breath test.

Hydrogen breath test (HBT)

Bacteria that live in the colon are capable of digesting and using sugars and carbohydrates as food. When the bacteria normally present in the colon digest sugars and carbohydrates, they produce gas. This is usually carbon dioxide, but also smaller amounts of hydrogen and methane. Although most of the hydrogen and methane produced by colonic bacteria is used up by other bacteria, small amounts of these gases are absorbed through the lining of the colon and into the blood. The gases circulate in the blood and go to the lungs, where they are eliminated in the breath. The gases can be measured in the breath with special analysers.

We had to be at the hospital at 0800! We live an hour and a half away so this meant getting up at 530 am and leaving by 6. Not fun. Anyway, my daughter had to stop eating by 8 pm the night before and couldn't have anything but water the morning of. We got to the hospital and were brought into a small room with some equipment. They gave her a drink with lactulose in it, and then began having her blow into a contraption fit with a syringe so they could collect the gases she exhaled and put it into a machine that would measure the hydrogen and methane gas. This was done every 15 minutes for 3 hours. While we were there, we watched a movie, played games, walked around.

During the test I was able to see the results of each gas collection and how it trended. The tech wasn't allowed to interpret the results, but she did tell me what they were looking for and it was quite obvious that the results were positive. Her numbers were really high and peaked just at the right times for a diagnosis of SIBO.
After the test we went to the cafe and ate hamburgers! Not real healthy, but we were so hungry!

So, now I wait for the call from the GI doctor to get the official results and what the next steps are.
In a way, it is all a bit overwhelming. First, I will have immense relief when I hear officially that we have an answer for the years of stomach aches. But then, there is all of this evidence that SIBO can be related to SPD, ADHD and Autism. How much of her behavioral concerns may be related to this condition?
For now, I am taking it one step at a time.

UPDATE: The doctor called the next day and confirmed that my daughter does indeed have SIBO. She is on a pretty powerful antibiotic to remedy this and hopefully we will see some results!

Who knew this would be so difficult? Autism assessment.

Well, it has been over a month since I began searching for someone to assess and diagnose my daughter for aspergers. At first, we were referred to a clinic at the children’s hospital for assessment. It sounds great! They have a whole team of therapists and doctors who see the kids and provide support. I got all of the paperwork in the mail, pages and pages of forms to fill out, plus pages and pages of copies to make to send in. I got through all of it, scanned it all and emailed it in, then called to check in and was told the wait list for her to be seen would be 12-18 months!

That is too long by! We need help now! Next I contacted the insurance company to find out what doctors or clinics would be covered. The phone call was weird! I had to go through the mental health insurance providers, they asked me all these mental health questions about her and I. Do we feel we would harm ourselves or others? (you mean like her melting down and punching me?) Anyway, it was a long weird call, at the end of the call they said they would send me a list of who they covered.

In the mean time I found a clinic through a different hospital system that assessed for autism, I made the call, got the referral sent over and then a few days later was told they couldn’t see her when I called back to check in.  When I asked why, they were cryptic and said I would have to talk to my daughters Dr. I called the doctor and it turns out this clinic doesn’t see kids over 9 and by the time we would see them she will be 10. Why couldn’t they tell me that?

So I waited for the list. I got the list in the mail, and started making calls. One had a great website, I called and was told the doctor would call me to see if he thought he would be willing to see her. He called me a day later and after asking a few questions he said he would see her. But he sounded cold, kind of pompous, not really someone I can see being therapeutic with my daughter. He said they would call me back in a month or so to schedule, I am leaving it out there just in case.

Then I called the one that had a Christian background. I was excited about this one. He sounded very nice,  again the doctor himself called me, but he sounded very hesitant, said he was about to retire and wasnt sure he wanted to get into it. I made an appt but after talking to my husband we decided this might not be the best person.

Finally, I found a clinic with many doctors and disciplines that the insurance covers! yay!!!! So I called and there is no wait list. Just the process of referral, clinical coordinator review and insurance verification. Finally we are half way there!!!!!

I am not alone!

Raising children with special needs is very challenging! One of the tough things is feeling isolated and alone. As you probably know if you are a special needs parent, getting out can be difficult! I feel like I am constantly on alert.
Will my child be able to handle going to the park today? Can she handle playing with another child, going to my friends house, going to the grocery store, staying home with her brother so I can go to Bible study? Lately, the answer is no.
Because of this, I tend to stay home, not have friends, not go to Bible study or lunch dates, but stay home and try to help my child learn to navigate this world successfully.
Staying home with little interaction with other moms means I have a lot of time to my own thoughts, time too stew over my childrens behavior and google! Not good. =)
So today I decided to google homeschooling and aspergers. My daughter will be evaluated soon for aspergers due to some increasing difficulty she is having. I found this wonderful, beautiful blog post from a woman who is doing just that, homeschooling a child with aspergers. What a breath of fresh air! I am not alone! Someone else is going through this! Someone else knows what it is like to wonder if there is really something challenging their child or if they just screwed them up by being a bad parent! I am not alone!
Here is a link to the post- http://simplehomeschool.net/homeschooling-aspergers/#comment-617570
I hope it can be inspirational for someone else.

It’s raining

Okay, I am going to talk about something that I wasn’t sure I wanted to share. I struggle with depression and anxiety. I don’t think anyone but my husband would know. I continue to function as normal on the outside. I do what I have to do. I think being a parent to special needs children makes it a little more likely to recur. I’m not sure about others but there are a lot of things we just don’t do, places we don’t go because my daughter just handle the stimuli. I used to try to just do what we normally would and figured she would have to just deal with it. I had the advice of a family member ringing in my ear from a few years ago-  “I never let my kids behavior dictate what we did, they just had to deal with it.” I thought this was what being a good parent was. Don’t spoil them! Don’t let them control the family! But let me tell you, when you have a child with add, spd and possibly on the spectrum, ignoring their neurodevelopmental differences and forcing activities that are difficult for them to handle is a sure fire way to ruin everyone’s day and come home with guilt, anger and sadness.
Anyway, one way I deal with depressive episodes is to go do things, be active. But my parenting experience is so isolating right now, that’s just not possible. I tried going to a Bible study weekly, but since we homeschool that meant my 14 yr old would babysit my 9 year old. Lately her behavior has gotten to the point where he just can’t watch her sometimes. So, no more Bible study. We tried organized activities, church, sports lessons, but she just couldn’t handle it. Would dread going and/or end up in tears.
So, limited activities plus depression is tough. I will get through, I always do. Lots of prayer and the assurance that this is just a season. Thanks for listening.

real life

So, here I am in the second half of my second term of seminary. So far it's going well, I have managed to maintain a 4.0! I am not going to say it hasn't been a challenge. Managing life with kids,work, home, grad school, marriage etc. can get a bit hairy at times!

The past few months we have been dealing with some behavioral issues with my daughter. She has a few diagnosis already, dyspraxia, sensory processing disorder, anxiety, but lately things are just more intense. I initially thought that maybe the increasing irritability was due to a concussion she sustained in February. But we took her back the doctor and they don't seem to think that is it. So, we spoke to a behavioral psychologist and are now being referred to have her assessed for autism. Of course I am googling and googling. I have suspected that she could be on the spectrum for some time now. But now that we are being referred for an evaluation of this I am really doing more research. She definitely has some characteristics that look like aspergers. I guess we will see. But I can tell you that home school has become increasingly difficult with her more frequent meltdowns and limited frustration tolerance. I am trying to remember who she belongs to, and know and trust that God has her in His hands. 

We have also been dealing with an injury in my son. He frequently sprains his ankles. Well, this last time (3 weeks ago) it looked pretty bad. We ended up finding out that he had a fracture through his growth plate on his tibia. He is supposed to keep a brace on it and NOT run or jump. That is tough for a 14 year old who is used to biking 5 miles a day and running and playing basketball every day as well. 

Then there is his tourettes, which has been getting bothersome lately as well. We have never used medication for it, but will be seeing someone soon to talk about how we can help him get better control of it. He is such a strong kid and deals with the ticks so well, but lately he is struggling with it. 

So, right now, my life consists of trying to maintain peace and organization at home, getting the kids to their many doctor appointments, working on the weekends, being a seminarian in grad school, while maintaining a home life. OH and of course focusing on God. That is the key right? To keep Him close and make sure that I am putting Him first in my life. 

Conquering Thyroid Cancer!

So, I was diagnosed with Thyroid cancer 3 years ago this spring. I always thought that once you received treatment for cancer, and were declared cancer free you moved on. But not so. With thyroid cancer they remove the entire thyroid! The motor of the body so to speak. You cannot live without the hormone your thyroid produces. So I take a synthetic hormone, synthroid, every day. Of course, this synthetic hormone does not work as well as your natural thyroid hormone would. It doesn't fluctuate based on your needs, it is always the same. And I suffer with many of the symptoms that other thyroid cancer survivors do. Fatigue, weight gain, joint pain, forgetfulness, irritability, depression and anxiety. It is hard! And I seriously feel that I have a lower quality of life.

I was thinking today, I do NOT want to be another victim! I don't want to be a casualty of thyroid cancer. I had it, and I cannot change that! I will be reminded of that every night when I take my thyroid medication, and every time I look in the mirror and see my scar, and every year on my birthday when I have my yearly scans and blood work to make sure it hasn't come back. But I don't have to let it ruin the rest of my life! I have been living like a victim! Accepting that this is me now, tired, anxious, forgetful etc. I want to have a life that thrives! I want to CONQUER THYROID CANCER!!!!!!!!!!!!!!!!!!!!!!!!!!

So, I am going to come up with a plan. A set series of actions to take to improve my health and live a full vibrant life!

Yes, it can get worse

I have wanted to blog about my journey of being a special needs mom. I haven't been very good about keeping this blog up though. I suppose that is part of being a busy mom of special needs kids, nurse, wife, seminary student etc. So you'll just have to forgive me. =)

Things with my kids have become more complicated. My daughter who has dyspraxia, spd, add, and anxiety disorder fell at our property and got a concussion. Now, when I was a kid, we got a concussion, we were monitored for a few days and then we moved on. This is not the case any more. 
When we went to see the doctor I was told that symptoms could come and go for 1-2 months! We were to keep things low key, not let her have too much screen time and just ride it out. 

Well, here we are 3 weeks later and things are not good. We deal with temper tantrums, meltdowns etc because of her developmental diagnoses already. But we are on another level now!
The normal sensitivity is magnified and the resultant meltdowns are much much worse than ever. We use to get to the point of her becoming violent or striking out at me maybe once a month. Now, it seems to be happening every other day! It is exhausting! 

I have this battle going on in my mind, do I let her be rude and refuse to do what I ask so that she won't escalate or do I try to be consistent and punish as I always do and just deal with the resultant explosion? 

I finally called her doctor to see if we should be concerned about this change in her behavior or if it was normal concussion stuff, and we were told she should be seen. So, this Wednesday we will take her in to be evaluated. I have read in some places that there is something called post-concussion syndrome that can last for years. I honestly don't know how I would handle that. 

Then there is my son. He is 14 and also has dyspraxia, adhd and anxiety disorder, but he also has dysgraphia, asthma and tourettes. I was told that his tics could get worse as he went through puberty but lately they are really bothering him. Also, his asthma is acting up. So, take this kid who is dealing his own issues, put him with his sister who is acting out, throwing fits etc and you can imagine how he reacts. Let's just say things at home are a little chaotic right now. I am trying to keep positive, and I realized that I really need to take things one day at a time. Looking at it all at once completely overwhelms me. =( 
I do know things will get better and this is just life. I am trying to stay close to God through it all. I'll be better about keeping up and posting updates. Thanks for reading.