Saturday, October 24, 2009
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.
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.
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!
Sunday, October 18, 2009
Friday, October 16, 2009
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!
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!
Sunday, October 11, 2009
Friday, October 9, 2009
I found it here
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 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.