Hereditary spherocytosis

My dear sweet 4 year old princess has Hereditary spherocytosis. Many have asked me what it is...so I will post it here for those interested.

(From Medicine.net)

HS is a genetic disorder of the red blood cell membrane clinically characterized by anemia, jaundice (yellowing) and splenomegaly (enlargement of the spleen).

In HS the red cells are smaller, rounder, and more fragile than normal. The red cells have a spherical rather than the biconcave-disk shape of the normal red cell. These rotund red cells (spherocytes) are osmotically fragile and less flexible than normal red cells and tend to get trapped in narrow blood passages, particularly in the spleen, and there they break up (hemolyze) leading to hemolytic anemia.

The clogging of the spleen with red cells almost invariably causes splenomegaly. The breakup of the red cells releases hemoglobin and the heme part gives rise to bilirubin, the pigment of jaundice.

The excess bilirubin leads to the formation of gallstones, (this is what happened to her last week) even in childhood, There is also often iron overload due to the excess destruction of iron-rich red cells.

The bone marrow has to work extra hard to make more red cells. So, if in the course of an ordinary viral illness, the bone marrow stops making red cells, the anemia can quickly become profound. This is termed an aplastic crisis.

The treatment of hereditary spherocytosis is to remove the spleen (splenectomy). Although the red cell defect persists, the breakup of the red cells (hemolysis) ceases. Splenectomy, however, is a hazard in young children. Young children without a spleen are at increased risk for overwhelming sepsis (bloodstream infection), particularly with the pneumococcus bacteria. Splenectomy is therefore usually postponed if possible until the age of 3 years.

The prognosis (outlook) after splenectomy is for a normal life and a normal life expectancy

For now, this means that she gets very ill with certian viruses. She has already had 4 emergency transplants in her first 2 years of life. She was stable for 2 years, and now she is having some troubles again.

I am very careful to not expose her to sicknesses, but I have to be even more so now. I am praying for wisdom on where I take her and who I go around...especially with all the flu going around. If she gets sick again, they will want to yank out her spleen and gall bladder sooner than later.

Wave of illnesses!

This is not a typical post for me, more of a "how we are doing" thing.

I am just reeling from this last week! Tonight is the first time since Friday that I am really able to get out of bed...so I am starting slow...computer time. Looking for a rental to move to (know of one?) and catching up on e-mails etc.

A week ago Thursday, my little princess has some severe abdominal pain that nearly landed us in the ER. It went on for over an hour, in 2 different episodes. We were on the way to the ER at 11:30 at night. Suddenly, her pains stopped...like when you take your car to the mechanic, it will stop making the noise it had been making for weeks!
The Dr. at the ER said to go home and come back if it started again. The next day, I got her into the Dr. for some labs and they said that her levels were OK and we should go home. The level they were talking about was her hematocrit.

She has a special condition that makes things like stomach pain a crisis for her, I am posting on her condition in a separate post for those who are interested in Spherocytosis.

My mom feelings were going off like crazy. I watched her all day Saturday and noticed that she was more yellow and lethargic. So, I called the real experts. Her hematologist at Children's hospital and they advised me to come in right away.

Most doctors have no idea what to even look for with her. Her crit level was ok (that is normally the one that will be way off) but several other levels were not good at all. It takes the experts to notice the warning signs with her.

Sure enough, she had had gall stones that sent her body into crisis. That was what the pains were about.Her liver function was way off and she was not doing good. Thankfully, they did pass and she recovered. By Monday she was ready to go home with warnings that they were going to want to see her in 3 days to talk about removal of her spleen and gall bladder.

Thursday came and we took the kids to Carrie's house so that my husband could go with me to the appointment. He normally does not come with me, but with talk of surgery I did not want to go alone.

We did labs and waited nervously. At the appointment, her doctor told me that her labs had continued to improve since Monday and they were not going to take out her organs right away! Thank God. He told me that he was prepared to do so if her labs had not improved.

We go back in one month to make sure that her levels continue to improve and that she does not have another crisis, so I guess we pray, wait and watch some more.
That same day, we picked up the kids and went to my Dr. in Everett. I was having trouble breathing. It was a terrible appointment. They kept me there for 3 and a half hours doing cardiac tests, chest x-rays and a ton of lab work.

I kept telling them that it was something with my lungs, not a heart thing. After 3 hours, the brilliant Dr. decided that I had anxiety and tried to send me home with anti-anxiety meds. I was very upset with his diagnosis. I knew that I was not having anxiety and that there was something wrong with my lungs.

After trying to convince him that I was not upset, and only making him not believe me more...I just wanted to leave. My 2 year old meanwhile, fell and cut open her forehead, needing 6 stitches. While they were waiting for me! I could hear her crying in the next room and knew that my other children were stressed out as well. Dad was a trooper the whole time.

I told him to do a pregnancy test before I would take anything he ordered. I was not going to take an anti-anxiety med, but he ordered some other things to help my breathing and lung inflammation.

While I was waiting on my meds, they ran down to the pharmacy to stop me from filling the prescription. Yes, I am pregnant with blessing #8. Thank God I did not let them bully me and I demanded a test first.

All I could do was laugh and praise God. I am sure the Dr. thinks that I am crazy. I was lauging with tears rolling down my face for joy.

I refused all his meds and went home with my tired, cranky family. The kids were so good during all of this, but I knew they had had enough.

Sure enough, some of my lab tests came back later that night that I have viral pneumonia. I was not happy with that Dr. who said I had anxiety. I have no history of anxiety but I do have a long history of asthma and bronchitis. Not to mention I had to go in again on Friday, sick as a dog and get some meds.

I am grateful for modern medicine..but why won't they listen to their patients? Or at least pay attention to symptoms? I had a very high heart rate (over 100 while resting and 140 after walking) and a very low blood pressure. I normally have perfect levels on both. I was wheezing and gasping for breath. Obviously, my body is fighting some infection. The fact that I did not have a fever made them dismiss any "real" illness possibility and claim anxiety. Hmmm. This is why I rarely go to the doctor. It takes something like pneumonia to get me even to go.

This has defiantly been a challenging week. A few friends brought meals (thank you!!) and my poor husband has had to take over some cooking. There was no homeschooling this week other than hit and miss math and reading. Such is life.

I am grateful for all of the prayers and support on our behalf.

I am grateful that my mom came to the hospital when my princess was admitted even though it was a LONG drive for her and she was at the Dr/hospital every other day this week with her MIL having surgery.
Now, I am praying to recover soon!

Changes in the wind.

This past few weeks was filled with so much tension and emotional drama for me. I won't get into all of it in detail, but I will say that I have felt the sting of judgement and the pain of isolation. To purge my soul of this heavy burden, I am writing about it.

I have been on the quest for the radical middle for several years now and that seems to upset some people tremendously. Not the political radical middle that you can find by Googling those words, "The Radical Middle or the Extreme Center is not any wishy-washy place to be, in a world where swimming to any of the ideological shores provides for a much calmer shelter". The radical middle is about finding the balance that God intends even while both sides are pulling on you to come to one extreme or the other.

When one talks about freedom in Jesus...some other assume that I am throwing away my salvation or that I am not following the Lord's commandments anymore.

God is the only one I am accountable to ultimately. I am actually a very conservative person, don't let the nose ring fool you. I take God's word seriously and pray every day for Him to open my eyes and heart more.

Some of my previous blogs have hinted to my journey out of legalism. I am talking about my legalism, not pointing fingers at anyone else, or calling them legalistic.

That is another misunderstanding lately. When I talk about how I am finding freedom from my own legalism people get defensive. I am not talking about anyone but me here.

I used to think that I had to follow all of these man made laws in order to be right with God. No one will say that out right, but that is there plainly.

Everyone will agree that we are saved by grace through faith, and yet we as people will continue to heap burdens, laws and more works on each other. Homeschooling moms especially.

As my friend Diana once said "as a homeschooling mom, we are told to not only grow the wheat together as a school project, but grind the wheat, bake the bread, build the table to serve it on and crochet the tablecloth".

I am guilty of taking on burdens that the Lord never intended for me to carry. Usually because I saw someone that I respected following a certain path. I assumed it was right for me as well.

I was not raised in the church. My past is, shall we say, colorful and dramatic. Perhaps that is why I am so passionate about grace. Jesus took me where I was, as I was, and showed me His love. He did not ask me to do anything other than believe. He did not ask me to clean up or be perfect right away. He asks me to allow him to finish the work he started in me, day by day, little by little.

My first few years as a Christian were the best years of my life. I was totally in love with my bridegroom Jesus. I had an active, exciting relationship with the Lord that was the height of my existence. My husband and I actively reached out to the hurting and shunned of society, the drunks and homeless. We were in a church that was all about helping others and each other.

Slowly, rules and laws crept in. Suddenly, I was told that I could no longer minister to alcoholic women or street people...it was not proper for a Christian woman (along side her husband even) to be around "those" people.

I am ashamed to say that I fell for that lie. We ended up changing churches (our first church closed down) We switched our service in the new church to various areas. For 5 years, we served there and learned a lot. I have to say that those years were just ok. I was still on fire for God, but I was slowly being squeezed by the added pressures of my growing family.

When I reached out for help, or expressed any frustration with trying to learn how to raise small children, I was simply told to stop having children (I had 3 at the time) I was told to not homeschool anymore, after all, I was one of only 2 families in this huge church who did. That was incredibly isolating.

People said that I should be building the church with my service and time. I was already there 3 days a week and one night at prayer meetings. Some times, I was there for a 6 a.m. prayer service. It was not enough. They wanted more and more time from me.

The legalistic lie that I fell for there was that the church was all that mattered. I should allow my children to go to public school, or at least stay in the church nursery so that I can serve the members of the church more. I have had the conviction to allow God to plan our family size and to homeschool since I was pregnant with my first child. No one else even got what I was talking about.

I realized (along with the help of my husband) that I was not in the correct place. My ministry is at home with my family. I am saddened to say that when I stepped down from serving I was quickly forgotten. I guess if you are not active in circles, friendships cease to matter. That was very tough for me to swallow as I am the kind who is very loyal to friendships.

I got my first taste of one form of legalism.

*If you are not giving all your time, money and service to the local church, you are somehow not a good Christian, or not really saved*

I won't even tell you how long I lived in that "rule".

So then, as it does...my life suddenly and radically changed. We moved about 30 miles away from there, to the home we had built in the county. We attended a small, county church. I ran up against some of the same ideas. I was asked to lead bible studies, work in the nursery and "plug" in with the women's ministry team...all while pregnant with twins. Yikes.

I declined to get overly involved. I had 4 more children in 3 years or so. I was busy enough at home. I don't think the pastor ever understood my explanations. I told him that my place was in the home for this season of my life. He would just stare at me as if I was speaking another language.

Eventually I was labeled as a luke-warm Christian because I was not obviously involved. How do I know that? People had the audacity to tell me that they were praying for "my walk" and that I would learn to hear God and follow him more and want to serve him in the local church. OK, that was only one person...but that was enough for me!

I love God's church, but I was overwhelmed with small children, a child with medical issues, homeschooling, running a homeschool support group and taking care of my family in general. I could not be at the church all the time. Needless to say, I never felt "at home" at that church. Most people did not even take the time to speak to me on Sunday.

I know that seems bizarre, but we do that to people all the time, don't we? If someone is not in your circle, they almost cease to exist. If a woman is busy with arm fulls of children, most people just try to sit as far away from her as they can! If she is keeping them with her at church like I did, it is both unpopular and unsupported. My children were not perfect, but we were trying to keep the family together on Sunday.

I won't even tell you some of the terrible things people said to me about that. I was attacked for not wanting to use the church nursery or Sunday school classes. Oh, what we do to people who do not follow our "rules"

Once we left there, I plunged head first into some other teachings and ministries. Many of them, I must say have greatly enriched my life. I learned about God's plan for my life as a wife and mother. I learned to embrace the blessing of each child the Lord gives us more fully and I learned that I was not the only one doing so.

I learned tons about dying to self in service to my family and about letting my husband function in his role as leader of the home. Not a popular ideas in this society at all!

Unfortunately, I went over board with rules. For several years I thought that I had to "look ok" on the outside to appear like a "good Christian" I wrestled with issues like wearing pants, head-coverings etc. My dear husband who is so much more balanced and full of grace than I am would point me to the scriptures on whatever issue I was dealing with.

He would bring me back to the free gift of grace. I do not have to do anything more to earn God's love. He already demonstrated it for me at the cross. God already accepts me as I am. It is His job to work out the dross in my life, not mine. He has his ways.

I spent too long trying to force change in my life. Most of it was not change that God was asking from me, but what others in my life were doing, or preaching on or insisting I do.

I thought that my natural desire to shelter my children was "good enough". We are not a perfect family, but I homeschool and I keep them safe and try to limit the yucky things like T.V. and other negative influences. I tell you, I went to some places a few years ago that made me feel like the worst mother in the world becasue my children have seen Disney movies or have played with other kids before.

I fell into a spiral of intense legalism on my part. Suddenly, nothing I did was good enough. If I took away cable, I had to only allow one DVD a week or they had "too much screen time" and that would somehow endanger our salvation.

If I allowed them to play with other children, I was allowing negative influences into their lives. Even though the only people I knew were other Christian homeschoolers!!

I was encouraged in certain books and discussions to keep them away from all children. My husband drew the line there again. He wants our children to have friends. Again, the only people they ever play with are other Christian, homeschooling kids from families that we know well. How is that not ok?

Then I was encouraged to have the children sitting quietly beside us in social situations instead of playing with other children because either the other kids would corrupt my kids, or my kids would corrupt the others. Oh brother. I began to get paranoid.

My husband again reminded me that God is in charge, not me. I can't police every moment that my children live. I have to allow them to play. My husband wants it that way.

I spent many long seasons trying to force absolute obedience from my children. I was told that if I did not, I was not following God's commands to train up my children. When I finally got over that lie, I saw that I had damaged relationship with my children in the quest to "look" perfect to others.

Again, I would be somewhere with arms full of squirmy toddlers or crying babies and my other little ones would get fidgety or even dare to speak their mind on an issue that was being discussed and other parents give me the eye. You know what I mean...that look that I have somehow failed miserable in my walk with the Lord if my child should dare to move or speak in public.

This world is not child friendly at all. Even those who claim to love children only do so when they are silent and still.

That may work for some families, but not mine. I am not saying that I encourage them to be wild or disobedient at all. I work consistently on discipline. The change in me is that I am no longer working to meet another families idea of what a disciplined child looks like.

I am seeking to know my children, walk along side them and love them. I am trying to love them as much as I can. We spent every day praying together, reading the Word and using every teachable moment to talk about God and His ways. When I was not cultivating relationship with them, they were resistant to what I had to say about God.

When I was yelling at them all the time to look and act a certain way, they did not want to follow me.

I am sorry that I spent so much time on that pursuit. No one was happy.

Now that we are working on issues in a loving, less fear driven way...they are happier and so am I. We took all 7 children to a wedding a week or so ago and they were delightful. We were so proud of them.

They were still and quiet when it was time to be and they were able to talk to adults in an intelligent way when they were talked to. Everyone commented on how well behaved they were. What a blessing to us both.

I was able to go to the wedding without tension and fear. We told them what was going on and how we wanted them to act. When my anxiety and tension were not present at what others might think of my children we had a totally wonderful time together.

Child discipline issues aside. I was also duped into thinking that I could not associate with anyone who was

1) Not a Christian and

2) Not "my kind" of Christian.

I had been told that there were regular Christians, or those who think they are saved, but are not really saved because they do not look as they should and are therefore probably deceived. I was told to avoid those people or my children would be corrupted. I have listened to sermons where the pastor will say that we are saved by grace, but then proceed to give a long list of ways that we need to change in order to get to heaven...huh?

I introduced such legalism into my children that they became afraid of the world in some ways. They were cruelly judgemental of any child that did not line up with what I had told them was acceptable. Yuck.

I am in the process of teaching my children that we are all in different places with God and it is not our place to judge another by our standards.

I have been accused of leaving the narrow path because I am teaching them to have grace and tolerance for others.

Why should that be? I am not telling my children to sin. I am still teaching them to follow God's laws as we understand them. I am just asking them to stop looking at the speck in their brothers eye and look to the log in their own.

I am telling them that what they see on the outside of someone is not always what is really going on. Sometimes, people are in pain, or crisis and they may come across in a way that they would not normally. Sometimes, people are low on faith, struggling and crying out in words or actions. That is not the time to judge them, but support them where they are and pray for them.

I have been in crisis these past 2 years and in many ways I still am struggling. I really needed some grace and love on so many fronts. I am sure that I have always acted the way that people think I should. That does not change my love for God or His ways. That just shows that I am human.

I am praying to understand God's love in a new way. I need Him to enable me to follow Him in the way that he wants me to instead of running after every new wind or doctrine.

Listening to my husband is a big step for me in that area. He really does have the balance that I need.

Emotional things are just easier for him.

So, now we are resting and looking around at the landscape around us and asking God which way to turn. Where can He best use a couple of un-perfect people to minister Christ's love to the hurting. How can we reach out where we need to.

The ministry to stop child sex trafficking that we got involved with has reminded us that there is a big, hurting world out there that we can reach without sacrificing our family in the process. We are praying for how and where to get involved in changing others lives with the gospel.

For now, I choose to close my ears to the ongoing debated and bickering about who is really saved. I am in the Word and in prayer. I choose to err on the side of grace.

I know I need that grace and love more than ever.

Messianic Dancing

This art work is entitled Dance of Deliverance...beautiful.

My Friend Stephanie invited me to go to a Messianic Dance Workshop with a group called Messianic Dance Camp International. I was really glad that I went. It was very moving for me.

I understand that the dances are intended to focus on worship of Jesus (Yeshua) and fellowship of believers I must say that I did feel a sweet presence of the Lord...however, it was hard for me to really feel like I was worshiping while I was trying not to run into someone!

Apparently, I am not very good at the turning in circles and going the right direction thing...I kept turning the wrong way (left, right...who can tell!) and stepping all over myself and messing up other dancers! They were very forgiving and patient with me! Considering it was my first time and all. I was not embarrassed at all, even when I messed up and that just goes to show how comfortable I felt there!

At one point...I actually got one dance right!

We danced for 3 hours...talk about a work out!

If you get the chance to check this out...go for it! I may see you there!

My dear friend Stephanie.
Her beautiful daughter!

This week in photos.

Summer's last hurrah...finishing up what is left of the garden!

Valiant knights and beautiful princesses.

We took the kids to a Japanese restaurant that we used to go to when we only had one child. It was very different going with 7 children. For one thing, we needed 2 tables!

It is kind of neat because you can sit on the floor to eat...sort of, there is a hole for us American legs! Most of us would not make it sitting cross legged on the floor for an entire meal. It was nice to eat out again...a rare treat.

Of course we did lots of park days while the sun was still out. Here are just a few shots.

A dear friend of ours got married (finally! lol) this is his first marriage at age 52!

Pumpkin patch!

The best cookies I have ever had.

Mr. All-around, good at everything...my oldest son, the composer has created his own cookie recipe. Mostly out of necessity. I can't make cookies. I have tried for years, I have even gotten outside help...and I have failed miserable! I can cook really well, even bake pies, cakes and breads but the art of cookie making eludes me.

So, the poor boy had to step up and save the family from the cookie woes. He too a chocolate chip recipe and added his own ingredients. Which he says have to remain a secret!

Yummy....

Making brown sugar

I have been making brown sugar for a few months now. I like the fact that I can use my really good, unsulphured molasses, save money...AND I never have to worry about running out as long as I can make more!It is super easy to do. I just mix sugar and molasses together in my food processor until it is well blended. You can use as little or as much molasses as you want. The molasses I use have a rich flavor.

Here is today's finished product. I just store it in an air tight jar! Easy and saves $$$ too!

Great article

In my wanderings and searching I found this article. I think it answers the question well.
I found it here
www.gotquestions.org

Question: "What does the Bible say about legalism? How can a Christian avoid falling into the trap of legalism?"

Answer: The word “legalism” does not occur in the Bible. It is a term Christians use to describe a doctrinal position emphasizing a system of rules and regulations for achieving both salvation and spiritual growth. Legalists believe in and demand a strict literal adherence to rules and regulations. Doctrinally, it is a position essentially opposed to grace. Those who hold a legalistic position often fail to see the real purpose for law, especially the purpose of the Old Testament law of Moses, which is to be our “schoolmaster” or “tutor” to bring us to Christ (Galatians 3:24).

Even true believers can be legalistic. We are instructed, rather, to be gracious to one another: “Accept him whose faith is weak, without passing judgment on disputable matters” (Romans 14:1). Sadly, there are those who feel so strongly about non-essential doctrines that they will run others out of their fellowship, not even allowing the expression of another viewpoint. That, too, is legalism. Many legalistic believers today make the error of demanding unqualified adherence to their own biblical interpretations and even to their own traditions. For example, there are those who feel that to be spiritual one must simply avoid tobacco, alcoholic beverages, dancing, movies, etc. The truth is that avoiding these things is no guarantee of spirituality.

The apostle Paul warns us of legalism in Colossians 2:20-23: “Since you died with Christ to the basic principles of this world, why, as though you still belonged to it, do you submit to its rules: ‘Do not handle! Do not taste! Do not touch!’? These are all destined to perish with use, because they are based on human commands and teachings. Such regulations indeed have an appearance of wisdom, with their self-imposed worship, their false humility and their harsh treatment of the body, but they lack any value in restraining sensual indulgence.” Legalists may appear to be righteous and spiritual, but legalism ultimately fails to accomplish God’s purposes because it is an outward performance instead of an inward change.

To avoid falling into the trap of legalism, we can start by holding fast to the words of the apostle John, “For the law was given through Moses; grace and truth came through Jesus Christ” (John 1:17) and remembering to be gracious, especially to our brothers and sisters in Christ. “Who are you to judge someone else's servant? To his own master he stands or falls. And he will stand, for the Lord is able to make him stand” (Romans 14:4). “You, then, why do you judge your brother? Or why do you look down on your brother? For we will all stand before God's judgment seat” (Romans 14:10).

A word of caution is necessary here. While we need to be gracious to one another and tolerant of disagreement over disputable matters, we cannot accept heresy. We are exhorted to contend for the faith that was once for all entrusted to the saints (Jude 3). If we remember these guidelines and apply them in love and mercy, we will be safe from both legalism and heresy. “Dear friends, do not believe every spirit, but test the spirits to see whether they are from God, because many false prophets have gone out into the world” (1 John 4:1).

Love

Love is what's missing
Love is the key
Love is not easy
Love will set you free.
A child's poem.

So true. Love is missing in all the places that it should be in. As I heard at bible study last night...love is a choice no matter how you feel, that you choose to make. Chose to be loving...to your husband, kids, friends, enemies.

Sounds easy...not easy to walk out.
We are all of us selfish and unloving at times. Mostly when we get "right" and the other person is then "wrong".

I am choosing today to search the scriptures and find out what this love that Jesus talked about really means. I am choosing to be loving no matter what. We will see if I go half crazy by noon!

Hopefully I have will more to say after some searching.