Another Update

We have been in and out of doctor's offices since I last posted. Rachel continues to battle with several infections. She is also having some peripheral nerve issues surfacing again. Her vision has changed in the last couple days. These things happened this summer when she was in the hospital for the Gullian-Barre syndrome.

We made a trip down to Children's last night because her doctor here felt that we had another infection starting up. Her lab work last night at the hospital did not send up any red flags and they sent her home for the time being. (She was so glad to be going home!)

She has an appointment with the Immune doctors tomorrow afternoon. We are awaiting what tests they will decide to run; and get their opinions on what is going on with Rachel's health.

Things at home here have been running pretty smooth. We seem to be in a holding pattern and that can be a bit unnerving. I have been trying to get things done and be proactive in having things ready in case we have an extended hospital stay ahead of us. I also have tried to keep busy - so as to help me not go crazy with all the details we are being given in regards to this T cell disorder.

God is good. I have been prompted several times to read a certain passage. Always I find comfort and encouragement through God's words to me! I feel quite assured that God wants me to make Him and Heaven so real to Rachel that even though what she is going through at this time is hard, she will have a peace that God is greater and Heaven is better than anything this world has to offer.

I will keep you all updated as I can. Thanks again for your prayers.

Blessings,

~Martie

Searching for Answers

Pictures of Rachel before she was sick...

Rachel continues to be sick. The skin on her arm is healing in some parts - other parts of the arm continue to be open sores. This causes a problem if the sores get caught on something or rub on her sheets wrong. They have opened up and bled more than once.

This week she has been very sick. The anti-viral medication makes her ill. The doctors have increased her anti-nausea medication to their highest possible dosing. This has helped some.

She went in again this week - and has strep again. They are quite concerned because the strep that she has is not your normal group A or B strep. It is a very very rare form of strep. She is in a lot of pain with her throat.

The doctor contacted the infection disease clinic requesting for them to see Rachel. After reviewing her records and having a conference call with her two doctors here, Infectious disease doctor's felt that her care needs to be handled by an immune deficiency group. Those doctors were contacted. After they reviewed her case, they feel that we are looking at there being something wrong with her blood. More specifically, the T-cell part of her blood cells. The T-cells are the part of the blood cells that fight viral infections.

There is one particular disorder that is extremely rare but shows itself after a case of mononucleosis. After the body gets sick with the mono, the blood cells do not fight off viral infections. (I am trying to write this - the best way I understand it .. I hope I am saying this all correctly!) :) They are running blood work and tests and looking into this as one of the possibilities of something that could be causing her to be so sick.

She has an appointment with the immune deficiency clinic at Children's hospital next Wed. She will meet with the oncology specialist of the clinic at that time. I have done my fare share of googling and researching the t-cell deficiencies. It is 'over my head' , so to speak; but understandable enough to know that none of these issues are fun/good issues with which to be dealing.

We covet your prayers! I will be spending the week trying to not go crazy wondering about it all. I plan on being proactive in getting things around the house in order and organized - that if I have to stay with Rachel for a hospital stay - things here will run smoothly for a short time. If Rachel gets sick with anything else before Wed, I am pretty sure we will end up at Children's early.

Thanks for all your prayers, gracious emails and kind notes and cards. They mean so much to us at this time. I will keep posted as I find out information.

Blessings,

~Martie

A Chapter Closed

What an eventful week we have had here! When Rachel went into the wound clinic they felt that they were looking at a staph infection moving up her arm toward the lymph system. They told me if it did hit the lymph system it would be a matter of life or death. (Not the most pleasant thing to hear as a Mom!) From the moment we walked into the clinic to the time when they were putting the IV into her arm was a short 2 hours. I knew we were looking at something serious.

The attending doctor came and looked at her arm and told me that he was wondering if we were looking at a case of shingles. He said it did not look like shingles but it was following the nerve line of the arm like shingles would. He also said that both thoughts - the staph infection and the shingles - were both theories. He said that they would treat for both and watch it overnight to see what happened. So IV meds were started - antibiotics and antivirals. They also began morphine for her pain.

By the next afternoon the doctor felt confidant that we were looking at a case of shingles. He also felt that we could take Rachel home and continue the meds there. She is taking anti-viral meds. She is on a quite high dose of the anti-viral meds. It is interesting that everything that she has had has been viral and in the herpes family of illnesses. We followed up with the doctor on Friday and he said that he wants Rachel to see a specialist about her immune system. About every 10-14 days she is getting sick with something else.

Back in November, Rob and I began talking about and paying about taking Rachel out of school for the second semester. We feel very strongly that God would have us bring Rachel home and continue her school here at home. I would like to say that this was an easy decision; but it was not! For one thing, this is Rachel's senior year. Taking her out of school would mean that she would not be formally graduating. This fact became less and less of an issue in the past several weeks as she continued to have her health deteriorate. I think the hardest part of the decision was knowing that if Rachel came home - that all the kids would come home. Because we live almost an hour away we knew that it would not be possible to home school Rachel and have the others continue school in the academy. This was the toughest part of the decision. In the weeks before Christmas break God gave great peace that it was a decision that we needed to make and a decision that He would bless.

On Christmas day we broke the news to the kids that we would be homeschooling after the break was done. There were tears. Abbey was especially disappointed in the changes. It was hard to see her so sad. Today while Abbey was in for church she cleaned out her locker and Rachel's locker. We have closed a chapter in our lives and reopened a new one.

The time the kids were in the academy was a time of real growth in our family. We are so thankful that God opened the doors for that opportunity. This past semester has been the hardest and most draining weeks we have lived through in our entire lives. They also have built character and brought a clear picture of what is important in life. Even though we are not finishing the entire school year, we feel that as a family we finished strong at the academy and now God is moving us on to a different chapter in our lives. We are excited.

I have missed the homeschooling routine and schedule of our lives. I am looking forward to being back in the saddle again. We plan on taking a couple of weeks working on routines and housework that have been neglected because of our busy schedule this past semester. We also want to give Rachel some added time to rest and get stronger before she jumps into her last semester of high school.

So, a chapter closes and another one reopens. We know this is what God has for us at this time. We are praying for strength and healing in Rachel's body. We are looking forward to more time together as a family. For all of you who are praying and have prayed for us - thank you so much. Words can not express how much your prayers have and do mean to us at this time. Thank you!

Thanks so much for stopping by. I am so glad you did.

~Martie