Just a few pictures from the summer. Enjoy my beautiful babies! (Sorry some are blurry. They are in constant motion!)
Just a few pictures from the summer. Enjoy my beautiful babies! (Sorry some are blurry. They are in constant motion!)
So what's new?
Life in the Saunders house has been crazy over the last six weeks, and that is why I have been a terrible blogger.
School started. Will is in first grade and Cate is in pre-k. Both kids are doing well. Will has the same teacher and therapists and several of the same classmates as last year. He loves school, and I love that! Cate started at Abundant Life School, a small private Christian school, and is doing wonderfully. She loves school and is learning so much. Not that I'm biased in the least, but she really is a smart girl. She is learning lots of book stuff but also, more importantly, she's learning the Word of God. She learns a Bible verse every week and tells me about Isaac, Adam and Eve, Noah, etc. I love it! When she thinks we're not listening, I hear her teaching her big brother about the Bible stories she is learning. So proud!
Jeremiah has been on the job hunt but hasn't found anything yet. He's in the process of applying to be a substitute teacher for North Little Rock schools. Hopefully it will work out and he can work at least some. Now that both kids are in school, we really need for him to be working. money is tight, and some breathing room sure would be nice.
My job is going great! I love what I do and for the most part, love everyone I work with. Taking care of kids with special needs is what I was made to do. I'm in the second year of my three year fellowship and am starting to have to think about what I'm going to do when I grow up. I really didn't think it would happen so soon, but it is. So, I am praying and trying to stay focused on God's will for my life, not my will. There is a lot tugging at us to keep us here in Arkansas. While I know that wouldn't thrill my family, I have to remind them that Arkansas is not nearly as far away as Papua New Guinea or China (where I have friends who are missionaries), so it could be much worse.
Will is doing okay medically. His seizures seem to be stable. His increasing lower extremity tone is probably still progressing, but if so, it is doing so slowly. His MRI showed that the syrinx on his spinal cord has only grown a tiny bit and is still too small to operate on. The test for neurotransmitter disorders he had came back normal, which didn't surprise me. It's good that it was normal but doesn't explain why his tone is getting worse. I'm going to do my best not to worry about it though. I can't change it. All I can do is love my boy and provide the most love and best care he can get. And after attending the funeral of a child from his class at church this week, I am reminded of how lucky we are and how much worse things could be.
I know this hasn't been the inspirational or encouraging post I often try to write, but I just don't feel very inspirational right now. I'm praying for strength, peace, and provision for my family. I'm praying for physical health and healing for my son, my niece and nephew, my friend from work and many others. I'm praying for wisdom and guidance regarding the decision I'll have to make about work. And I'm praying for rest and renewal, for my mind, body, and spirit. I hope everyone reading this is doing well, and I hope to have an uplifting post for you to read soon. Until then...
Will Update
It has been about a month since I posted any sort of update on what's going on with Will to the blog, so here goes...
August has been a busy month full of tests, procedures, and doctors appointments. Will had an MRI of his entire spine under general anesthesia on August 11th. While he was under sedation, a lumbar puncture was done to test for neurotransmitter disorders. The actual procedures went well, and he came out of anesthesia fine. Unfortunately, Will had a lot of pain from the lumbar puncture. For the first 36 hours after the test, he wouldn't stand or walk. It was about 4 days after the test that he stopped crying all the time and not until a week after the lumbar puncture that he would lay flat on his back.
We saw the neurosurgeon on August 16th for results of the MRI. He said the syrinx (kind of like a cyst) on Will's spine had grown minimally and was still too small to operate on. He said it may or may not be the cause of what's going on with Will. If it is the cause, we have to wait for it to grow (and him get worse) before they can do anything about it. He wants to see us back in 6 months with another MRI to monitor the syrinx. We have appointments scheduled for February.
Will is currently in the hospital for a long-term video EEG. We were hoping to capture at least one of his seizures on it so we can better evaluate what's going on and give a more targeted medicine, but so far no luck. I guess it's a good thing that he's not having seizures, but it kind of defeats the purpose of the admission. We will go home tomorrow. I'm not sure what will happen if he doesn't have any on EEG. They may go on and add a second medicine, or they may wait and see if he starts to have more seizures again first.
We should get the results of the neurotransmitter test in another 2 weeks. We are also going to have blood drawn for mitochondrial disorders but haven't been able to get that done yet.
Will had his well child check on Thursday, and everything looked good. He hasn't gained much weight this year, but he's still at the 50%, so we're not too concerned. He is at the 75% for height. His doctor is helping us get him a new car seat and special needs stroller and filled out paper work for his new handicapped parking placard and Medicaid waiver application. It was a very successful trip.
We have ophthalmology and dental clinic visits in the next few months. Hopefully those will just be routine check ups. Thanks for all the prayers and support during this time. We love and appreciate each of you!
Daily Bread
We're doing a series on prayer at church right now. Pastor Rod is using the Lord's Prayer from Matthew to give us a pattern to pray. This week was the third week of the series, and he focused on the part of the passage that says, "Give us this day our daily bread." You would think there isn't much to say about that. Seems pretty self-explanatory. Boy, are you wrong! I learned more about that one sentence yesterday than I have in my 29 years of life (yes, I'm getting old!). And, I learned something I never really paid attention to before. Pastor Rod broke it down into even shorter parts, teaching about what each word or two meant and how it was useful in praying. But the part that really spoke to me was daily bread. He used the illustration of fresh-baked bread. If you've ever had it, you know that the day it is baked it is delicious. However, if you wait a day to eat it, it is hard and stale, nothing like it was the day before. God does not promise us tomorrow. However, He does promise us that He will meet our needs today. That is the whole point of daily bread. For God to meet our needs just for today. To give us enough strength, peace, hope, food, money, or whatever to make it through today. God knows what our day will hold, and if we can actually rely on Him, He will give us what we need to get through it. I'm sure most of you have heard the scripture that says to let tomorrow worry about itself. That's what we have to do...pray for enough for today, and then tomorrow do the same thing. It's day by day.
This lesson came at the perfect time. Our little family is in probably the roughest financial time of our lives together. I'm being very open and honest because I feel that some of you are right there with me (or have been) and need to hear this. When you have to tell people you can't do things (on a daily basis) because you don't have the money, it gets old. When you have to tell your child they have to wait to have something very simple until pay day, it makes you sad. But, God does not promise us that He will give us enough to go out to eat with our friends every week or to buy things for our children. What He promises is to meet our NEEDS. I have spent a great deal of time over these last weeks really focusing on what my needs are and what my wants are. I'm praying for God to meet our needs - food for today, gas for today, a roof over our heads for today. Do you see a pattern? I'm not praying for tomorrow. I need to focus on today.
Give us this day our daily bread.....
This lesson came at the perfect time. Our little family is in probably the roughest financial time of our lives together. I'm being very open and honest because I feel that some of you are right there with me (or have been) and need to hear this. When you have to tell people you can't do things (on a daily basis) because you don't have the money, it gets old. When you have to tell your child they have to wait to have something very simple until pay day, it makes you sad. But, God does not promise us that He will give us enough to go out to eat with our friends every week or to buy things for our children. What He promises is to meet our NEEDS. I have spent a great deal of time over these last weeks really focusing on what my needs are and what my wants are. I'm praying for God to meet our needs - food for today, gas for today, a roof over our heads for today. Do you see a pattern? I'm not praying for tomorrow. I need to focus on today.
Give us this day our daily bread.....
Will Update
I want to start by apologizing to anyone expecting an inspirational post. This will not be that. I just don't have it in me this morning. I will, however, update you guys on what's going on with Will and where we are in all of this.
First, a quick recap for those who didn't read my last post about Will. He saw his neurologist on June 3 and we had some very unexpected things happen. We knew his EEG was abnormal, but this seemed to concern the neurologist more than I thought it would. I guess it's because he is on such a high dose of Keppra that she expected it to normalize. He also had several abnormalities on his neurological exam that were new and concerning. So, long story short, we were referred to three more specialists: epileptology, neurosurgery, and genetics.
We have seen genetics. That appointment was on July 5. Will has had an extensive genetic work-up in the past, but given that his diagnosis is clinical at this point and all the changes, his doctor thought we should re-investigate. So, the geneticist said he would think about disorders or neurotransmitters or mitchondrial disorders. The first is only testable by a lumbar puncture (spinal tap). The second is a blood test. Jeremiah and I decided to think about it for a few days before making a decision, but ultimately we decided to pursue both. The reason for this is that some of these are treatable. Not that Will would be a "normal" kid, but treating could help stop the progression of what's going on and perhaps make that better.
We saw epileptology on Tuesday (July 19). He thinks Will probably needs a second seizure medicine but wants to do a 24 hour video EEG before adding it. This way if they are able to capture a spell they may be able to tailor which medicine they chose to his specific type of seizures. This will require an inpatient overnight hospital stay and Will to leave the EEG leads attached to his head for 24 hours. I am not looking forward to that. We had planned on having the blood drawn for the mitochondrial disorders after that appointment but we waited for over an hour in the exam room for the doctor, and by the time we finished with the appointment, the lab was closed. So, we're going to have to take him back up to the hospital to get the blood drawn.
We were finally called about his MRI yesterday. It is going to be on August 11 at 1:00 in the afternoon. He has to be put to sleep for his MRIs because he can't be still enough when he's awake. (I'm sure that surprises all of you!) What this means is that he won't be able to eat all day before the MRI. He can have clear liquids and jello (which he doesn't like) until around 10:00 but then nothing until he wakes up from the anesthesia. That morning is going to be a nightmare! We are attempting to coordinate the lumbar puncture with the MRI so that he won't have to be sedated on two separate occasions. I've been told that this should be possible, so I have my fingers crossed. We will see neurosurgery after the MRI is done, but we don't have an appointment scheduled yet. I emailed the specialty nurse this morning to let her know when the MRI was in hopes that she can get us in with the neurosurgeon the next day.
Both kids start school on August 15, and I would be thrilled if we could complete this work-up prior to school starting. I am doubtful we'll get the EEG done before then, but hopefully we can get the rest done.
Please continue to pray for us as we journey down this road of figuring out what's going on with Will. Any of you who know me well know that I am the type of person who needs answers. I'd rather have a not-so-good answer than not know anything at all. My prayer is that whatever is causing all of this is easily fixable, whether that means surgery or medicine. Regardless, I definitely need wisdom about how to go forward with future medical decisions, peace about the situation, hope that things will be okay, and strength to deal with this on top of the other stressors in my life. I appreciate you all and will keep you posted as the work-up progresses.
First, a quick recap for those who didn't read my last post about Will. He saw his neurologist on June 3 and we had some very unexpected things happen. We knew his EEG was abnormal, but this seemed to concern the neurologist more than I thought it would. I guess it's because he is on such a high dose of Keppra that she expected it to normalize. He also had several abnormalities on his neurological exam that were new and concerning. So, long story short, we were referred to three more specialists: epileptology, neurosurgery, and genetics.
We have seen genetics. That appointment was on July 5. Will has had an extensive genetic work-up in the past, but given that his diagnosis is clinical at this point and all the changes, his doctor thought we should re-investigate. So, the geneticist said he would think about disorders or neurotransmitters or mitchondrial disorders. The first is only testable by a lumbar puncture (spinal tap). The second is a blood test. Jeremiah and I decided to think about it for a few days before making a decision, but ultimately we decided to pursue both. The reason for this is that some of these are treatable. Not that Will would be a "normal" kid, but treating could help stop the progression of what's going on and perhaps make that better.
We saw epileptology on Tuesday (July 19). He thinks Will probably needs a second seizure medicine but wants to do a 24 hour video EEG before adding it. This way if they are able to capture a spell they may be able to tailor which medicine they chose to his specific type of seizures. This will require an inpatient overnight hospital stay and Will to leave the EEG leads attached to his head for 24 hours. I am not looking forward to that. We had planned on having the blood drawn for the mitochondrial disorders after that appointment but we waited for over an hour in the exam room for the doctor, and by the time we finished with the appointment, the lab was closed. So, we're going to have to take him back up to the hospital to get the blood drawn.
We were finally called about his MRI yesterday. It is going to be on August 11 at 1:00 in the afternoon. He has to be put to sleep for his MRIs because he can't be still enough when he's awake. (I'm sure that surprises all of you!) What this means is that he won't be able to eat all day before the MRI. He can have clear liquids and jello (which he doesn't like) until around 10:00 but then nothing until he wakes up from the anesthesia. That morning is going to be a nightmare! We are attempting to coordinate the lumbar puncture with the MRI so that he won't have to be sedated on two separate occasions. I've been told that this should be possible, so I have my fingers crossed. We will see neurosurgery after the MRI is done, but we don't have an appointment scheduled yet. I emailed the specialty nurse this morning to let her know when the MRI was in hopes that she can get us in with the neurosurgeon the next day.
Both kids start school on August 15, and I would be thrilled if we could complete this work-up prior to school starting. I am doubtful we'll get the EEG done before then, but hopefully we can get the rest done.
Please continue to pray for us as we journey down this road of figuring out what's going on with Will. Any of you who know me well know that I am the type of person who needs answers. I'd rather have a not-so-good answer than not know anything at all. My prayer is that whatever is causing all of this is easily fixable, whether that means surgery or medicine. Regardless, I definitely need wisdom about how to go forward with future medical decisions, peace about the situation, hope that things will be okay, and strength to deal with this on top of the other stressors in my life. I appreciate you all and will keep you posted as the work-up progresses.
Unanswered Prayers
This is something I feel should be addressed. So many people believe that their prayers go unanswered. In fact, there is even a country song about it..."Sometimes I thank God for unanswered prayers, remember when you're talking to the man upstairs, that just because he may not answer doesn't mean he doesn't care, some of God's greatest gifts are unanswered prayers." Thank you Garth Brooks (and now you will all be singing this song all day long!). I think this is wrong, but so many people believe it's true. If God doesn't answer your prayer, exactly how you want it answered, in exactly the time you want it answered, then He doesn't care, wasn't listening, isn't going to answer, or whatever. Forgive my bluntness, but that's a bunch of crap! It has taken me several years to learn this, but God ALWAYS answers prayers. I know it's hard to see that when you're staring down the barrel of a loaded gun, per se, but it's true. It may not seem like it when your world is crumbling down around you. If God answers prayers, why did I lose my job? Why did my spouse/child/parent/best friend get sick? Why did my spouse cheat on me? Why aren't my kids following the Lord? Why is there so much war and sadness going on all around the world? Why? Why? Why? I have asked these exact questions. Why is my son disabled? Why can't we figure out what's wrong with him? But over time, God has shown his greatness over and over. Will can say more words than any other child I've met with his condition. He is a sweet boy who loves his family. He brings joy to every room he enters and blesses others beyond belief. God always answers prayers, but it may not be in the manner or timing we desire. We must remember that God's will and His timing are perfect. I know that's easier said than done, but it's true. Spend time with Him in His word and in prayer and you'll see it. I have several friends and family members going through some pretty serious trials right now, and I hope if you're reading this that you'll remember that in His perfect timing, God WILL answer your prayer with His perfect answer. I pray that we have the peace and understanding to accept God's will and answer to our prayers. So don't think you're prayers are going up into the big empty sky and that no one is listening. He is there. He is always listening. And, He will always answer.
Parenting 101 (By Pastor Rod)
I want to be sure everyone is aware, this information is not from me. These awesome words of wisdom come from my pastor, Rod Loy, who is a very Godly man and a much more experienced parent than I am. He has two sons, one who is around age 20 or 21 and the other is 18. He shared this with us last night at church, and it's too good to keep to myself. So, here goes...
Principles for effective, Godly parenting:
1. Be physically affectionate with your children.
Don't let a day go by without telling them that you love them and hugging/kissing them.
2. Model sacrifice.
Sacrifice should not be unusual. It is a part of following Jesus. Let your kids see that.
3. Teach your children an outward focus.
Be open with your giving. Let them know it is a habit and a lifestyle. Open your home to people who need you and your family. There is joy in giving to others.
4. Don't interfere with your children's peer problems and conflicts.
They have to learn to manage conflict at some point. Let them do it while they still have a safety net.
5. Encourage other healthy voices in their lives.
Kids need other spiritual leaders in their lives they can talk to and with. It needs to be the right people. It doesn't take a village to raise a child, it takes a church (that's one of my favorites!).
6. Worship and pray in front of your children.
Your kids need to see you visibly love God.
7. Apologize when you make parenting mistakes.
Your kids already know you made the mistake. You will gain respect from them when you do this.
8. Don't try to be fair and equal if you have more than one child.
Kids need to learn that life is not fair and equal all of the time. You don't have to treat your children the same because they aren't the same. (Bet that stings for a lot of you!)
The other thing he shared is what I consider to be the most important thing of all, what he and his wife wish they'd done differently. Here it is:
Don't raise your children based on your expectations or what other people may think. Raise them to please God first, not you or other people. The only thing that should truly matter is that your children become life-long followers of Jesus Christ. Consider what matters to you most - it shouldn't be all the little details or making you or someone else happy; it should be that your children become life-long followers of Christ (noticing a theme here?). Make that decision now, and parent toward that one goal. There will be a lot less stress in your life and your home if you put aside your expectations for your child and concern for what others think. What is the absolute best place for your child? (My Daddy has told me this every day) In the center of God's will.
So, I hope this helps some of you. I know it was eye-opening and helpful to me. I plan to put every one of those principles into action and to focus on what really matters - raising kids who know and love the Lord and seek to follow Him daily. The rest is just details.
Principles for effective, Godly parenting:
1. Be physically affectionate with your children.
Don't let a day go by without telling them that you love them and hugging/kissing them.
2. Model sacrifice.
Sacrifice should not be unusual. It is a part of following Jesus. Let your kids see that.
3. Teach your children an outward focus.
Be open with your giving. Let them know it is a habit and a lifestyle. Open your home to people who need you and your family. There is joy in giving to others.
4. Don't interfere with your children's peer problems and conflicts.
They have to learn to manage conflict at some point. Let them do it while they still have a safety net.
5. Encourage other healthy voices in their lives.
Kids need other spiritual leaders in their lives they can talk to and with. It needs to be the right people. It doesn't take a village to raise a child, it takes a church (that's one of my favorites!).
6. Worship and pray in front of your children.
Your kids need to see you visibly love God.
7. Apologize when you make parenting mistakes.
Your kids already know you made the mistake. You will gain respect from them when you do this.
8. Don't try to be fair and equal if you have more than one child.
Kids need to learn that life is not fair and equal all of the time. You don't have to treat your children the same because they aren't the same. (Bet that stings for a lot of you!)
The other thing he shared is what I consider to be the most important thing of all, what he and his wife wish they'd done differently. Here it is:
Don't raise your children based on your expectations or what other people may think. Raise them to please God first, not you or other people. The only thing that should truly matter is that your children become life-long followers of Jesus Christ. Consider what matters to you most - it shouldn't be all the little details or making you or someone else happy; it should be that your children become life-long followers of Christ (noticing a theme here?). Make that decision now, and parent toward that one goal. There will be a lot less stress in your life and your home if you put aside your expectations for your child and concern for what others think. What is the absolute best place for your child? (My Daddy has told me this every day) In the center of God's will.
So, I hope this helps some of you. I know it was eye-opening and helpful to me. I plan to put every one of those principles into action and to focus on what really matters - raising kids who know and love the Lord and seek to follow Him daily. The rest is just details.
