Elizabeth did well yesterday. She fought, but not as hard as I had expected. It broke my heart because, as she sat with her arm ready for the blood work, she cried as hard as she could all the while crying "no, mommy, no mommy, no mommy". It was so hard to hold her and hear her begging me "no". After the first blood draw, they administered a nasal spray. She didn't fight it at all and did exactly what the nurse had asked her to do. Then we waited an hour. The nurse went through the training me about how to take care of her. It really isn't that bad. She was very insistent that we try first aid first. If after 10 minutes the bleeding has not stopped, then we administer the spray. If that does not control the bleeding, then we call the hematology department. Typically kids that have this disorder have very few problems. Often they do not discover it until the child begins menstruation or enters school and has issues with many nosebleeds at school or injuries or they discover it when they child undergoes major surgery (as in our case.... with the preop questions). Surgery is really not that big of a problem. The hematology team will devise a plan and then discuss it with the surgeon. She will be given medicine intravenously during surgery and then medicine afterwards. With the tonsillectomy, she will take medicine for 10 days following the surgery. We also will, most likely, be admitted overnight. It generally is a out-patient surgery, but with a bleeding disorder, they most likely will monitor her. Even though the ENT nurse suggested that there will be very little, if any, blood during surgery because they now remove tonsils with a laser, the hematology nurses suggested there still would be a concern with Elizabeth because you are dealing with a lot of mucous membranes. I am not sure what all that means, but evidently it means there will be blood occurring with her. We will meet with the ENT nurse/doctor and discuss if there is truly a need for this surgery and will proceed with it if there is.

As for life around here, it is normal. God is working in each of our lives. I am confident that He allows us to travel down different roads in order to prepare us to become the man and woman He desires us to be to further His kingdom. Right now, Emily is walking a road that is very rocky and very difficult. Please pray for her. God is faithful and I am confident that He has her in the palm of His hands. It amazes me how it seems that when you make a commitment to serve Him or follow Him, life becomes much more difficult and the road becomes very rocky. Time and again, when Mark and I have made a true commitment to follow what we believe is God's will, something immediately comes up to challenge our commitment or make it difficult to follow through with it. But EVERY time, God has been faithful to give us the ability to make it through and ALWAYS we are closer to Him when we come through it. So please pray for Emily. Erin and I will be making a trip there tomorrow. I am really looking forward to a couple of days with just the three of us. Mark knows I need to go, so he has been absolutely wonderful and supportive. Please pray for him has he has the 2 little ones and the boys. He has to handle a birthday party for Sam... though hopefully it will be fairly easy since they are just go to a paintball field (how fun will that be??). Still, he has to be in charge and the one to make sure it all goes well.

There are times in life when nothing makes sense, yet I know that God is in control and it all makes sense to him. There are things that I watch and can't really grab ahold of in my mind but I still rest in His hands, knowing that He knows and He understands and KNOWING that there is a far greater purpose; one far beyond what I see in front of my face. It gives me peace even in times when it shouldn't. I am so thankful that I know God personally and that I can go to Him. He is my shelter, my refuge, my calming peace. He is my everything.

Spring break is this week for the kids. They are really looking forward to the time off school. Erin is beginning to have some serious senioritis. That's ok with me. It is nice to see her let down a little with school. SHe has worked hard; many nights where she was up long past midnight only to wake up by 6:30 the next morning. She just heard back from the college about the honors program and scholarship. She was one of only 25 kids selected to be in the East Meets West Honors Program and was selected to recieve one of the scholarships she interviewed for. We are so very proud of her. SHe is a bit overwhelmed with the work that she will be facing in the honors program, but very excited about it as well.

Update on Elizabeth's condition. She officially has a moderate case of platelet storage pool deficiency. It is a bleeding disorder caused by a deficiency in dense granuales in the platelets. Dense granules release chemicals in the clotting process and help platelets stick together to form clots. People with this typically have mild to moderate bleeding episodes because it takes longer for your platelets to stick tobether and form a clot. Because of the missing chemicals, they can't let other platelets know that more platelets are needed for clotting (information given to me by Nationwide Children's Hospital). They also sent a pamphlet that I need to make sure the schools have on file. It informs them what to do if she is injured or having difficulty with anything. Just reading it could scare a person to death. All this time, I have never been too concerned about her falling or scraping a knee or anything.... NOW!! YIkes!! I am a little nervous. Silly how knowing something can change an entire outlook.

So... we are going back to Children's on Tuesday to have some more testing done. THis time they will draw blood and time how long it takes to clot. She will then be given a nasal spray and repeat blood draw an hour later. They will time the second draw as well. There should be a significant change in the time it takes to clot. They will also educate us more on her condition. I shared with Elizabeth that she is going to need more blood. She is, to say the least, not happy nor willing to do it. So if you wouldn't mind praying that she does not fight me and the draw is easy, I would appreciate it.

As Mark and I have had the joy of raising 6 different children, somehow our children or better said.. our family, has been known to have things that just are not common to other families. Examples: at 10 1/2 months old, Emily had surgery for a reflux of her kidneys and we discovered that she was born with 3 functioning kidneys. At the age of 4, she had emergency surgery for mastoiditis (which was heading into her brain at the time); a direct result from an ear infection. Jacob had an episode where his fever was trapped in his body and nearly boiled his brain. Sam experiences halucinations when he has a fever over 102 or 103. Sam also had a tent stake through his foot and had to have surgery to remove it. Erin contracted a virus at the age of 18 months that literally could have killed her baby brother or melted holes in his brain had he contracted it. Nearly all the kids contracted swine flu. And the list could go on. Those are just a few of the things that our family has experienced that most families probably never will. And so when Elizabeth came into our family, I think she sensed that she needed to be a little different so she could truly fit in! Thus...she decided having feveral seizures would do the trick...scaring us all to death! Then she decided pneumonia would help out and thus ended up in the hosptial within the first 5 months of being with us. To add to the thrill, she had beta minor thalassemia, some rare skin disorder and the need to have her tonsils out.

And if that isn't enough, she decided to add another interesting twist to our life. You know.. you thought she truly felt like she fit in. I really didn't think she needed to have something more unusual to feel like she is one of ours! :)

We got the report back and it appears that she is positive for platelet storage pool deficiency. I am not sure the entire name of it. THis is what I caught in the phone conversation. THe hematologist that ordered the test is out of the country, so I can't speak with her. But the woman who called shared a little and is sending me a fax sheet on it. It will effect the surgery. As to the degree, I do not know. Evidentally this is a bleeding disorder and is probably the reason she has nosebleeds unexpectedly or if she is slightly hit in the nose. But because she doesn't bruise that easily (I haven't noticed that anyway) and she really doesn't bleed proficiently when she is cut (though I can't remember too many cuts), she probably isn't effected by it very much.

Evidentally, she will need a nasal spray that helps the platelets become "sticky". I guess that helps them clot. The spray would be administered before surgery and then given as an iv during surgery and then the spray is given after surgery. My guess is that she will be admitted overnight; but that may not be the case. We will have to wait and see. I think I am going to ask the doctor if we can go ahead and do a sleep study on her to determine if she is truly experiencing apnea. I would hate to have her undergo a surgery that may not really need to be done considering this new diagnosis.

As for day to day life, just like thalassemia, this disorder should not really effect her. But when she has a surgery that causes much bleeding (which tonsilectomoies are very known for), it becomes important to be aware of. I am very thankful for the anesthesiologist who wanted her seen by a hematologist before he allowed her to have this surgery. God is so good! Who would have thought that in my answering questions, this would all come up. Some of the comments I made to the nurse who called were not a direct result of the question, but merely an afterthought. Nosebleeds were one of those things. I almost answered whether she has problems with nosebleeds as "no" simply because she doesn't have them that often. In fact, I only guessed and I could be wrong about how much I told them. She may not have them nearly as often as I mentioned. And when I talked to the doctor, she never asked about hte nosebleeds; I asked her if that was anything I should be concerned of. Because of my concern, the doctor decided to run a few tests. God is so good!!!

Anyway.. these are the results. I wanted you to know since I posted yesterday that I should get the results then.

Emily has gone back to school. Unfortunately, she added an interesting twist by taking Erin's backpack (accidentally).... the backpack that has her senior paper in it, all her notes for EVERY class, and 3 textbooks and a calculator... yep. .the ALL IMPORTANT high school school supply! It's not easy being nearly 8 hours away! Oh how kids can change your mood or your plans in a moment! So we are in the process of figuring that one out. I think we are having her mail as much as she can in the Flat Rate boxes. All three teachers of the textbooks are willing to loan Erin another one until Emily comes back. That will help tremendously.

I am still awaiting results on Elizabeth's bloodwork. I expect to find something out today or tomorrow. Here are a few pictures from the week:

Happy Birthday Sam. It is hard to believe that you are 16 years old! I am amazed over and over about how quickly time flies. Sixteen seems so old. Sam is such a fine young man. He has been experiencing some difficulties lately, but has truly came out of the circumstances and really grown up through them. It has been so exciting to see God working in his life.

Sam has filled our lives with laughter and joy. He is constantly able to make me smile. He seems to have a knack at knowing just the right things to say to lighten my load. He is tender, thoughtful, determined, and an incredible big brother. He has been a true gift from God.

Enjoy the travel through time. Thanks to all who added to his book. It was quite a hit. I hadn't expected him to enjoy it as much as he does. That thrills my heart. It was an exceptional fun day today, everything we wanted to do just didn't seem to work out. But Sam was a trooper and never complained about it. We hope to take him and some good friends paintballing next week.

I was talking to Mark last night and realized that I may have been a bit confusing with Elizabeths' medical conditions. So, I thought I might make it a bit more clearer. The facts that we know so far: She has been diagnosed with beta minor thalassemia. She needs her tonsils out due to snoring and tiredness during the day (they are assuming she possibly has some form of apnea which is giving her poor nights of sleep). Beta Minor Thalassemia does not cause any complications for surgery. We had bloodwork done for Von Willy Bronz only because she experiences nosebleeds and to rule out complications for surgery. The Von Willy Bronz test came back negative - meaning she DOES NOT have the disease. But when they did the testing, they discovered some irregularity in her platelets. The testing showed that her platelets do not perform accurately enougb to cause clotting in the appropriate amount of time. Thus, we had to have more bloodwork to determine what is causing the abnormaility in her platelets and to figure out if the tonsilectomy will be dangerous. We had the test yesterday; it takes 5 days to determine any results. So we are just waiting.

After having bloodwork last week, bloodwork twice a month ago, and 3 shots on Wednesday, Elizabeth was not excited about getting it done yesterday. She has been so good during it all. SHe cries, but does not fight. Yesterday, she faught with every once of energy she had in her. It took 2 of us to hold her still for the third person to draw the blood. All the time she screamed "no... no.... no... no". But this was the first time that she did not stop her feet and shut down for the next 15-30 minutes. She almost immediately settled down after the blood was taken and gave me no pouts whatsoever.

I have enjoyed having Emily home. She seems so relaxed and at ease. It is the first break that she really seems to be sitting back and enjoying. I will hate to see her go back; though it is a good thing.

I mentioned that Elizabeth was going to be seeing a hematologist on Friday because of thalassemia. We saw the doctor who explained, once again, the disorder. It is a blood disorder. Her hemoglobin values are a little low and she is anemic; indicating that the disorder is truly beta minor rather then intermediate or major. The other two become problems; beta minor truly is not something to be concerned about. She just needs genetic counseling when she is ready to start a family. As for thalassemia and a tonsilectomory, the doctor saw no problems and was willing to approve it after we had blood drawn to make sure that her hemoglobin had not dropped. If the hemoglobin is below 10, the anesthesiologist is uncomfortable. I believe that is why we had to see a hematologist. Elizabeth is just slightly below 10 so the doctor did not feel it would be a problem. She ordered the blood work. Elizabeth does experience nosebleeds frequently enough that I mentioned it to the doctor. Upon hearing that, she decided it would be wise to have a Von Willy Bronz test ran. We did and it came back normal. The problem is this, though: one of the tests that was ran indicated a problem with her platelets. I don't really understand it all, but we have to go tomorrow and have more bloodwork drawn. Poor thing! She had 3 shots today (Kindergarten preparation). She had blood drawn last week and blood drawn a month ago (twice because the lab made an error and it had to be repeated). She is being a trooper, but when I told her today (after those shots) that she would have to have more blood drawn ... she said "awwoohhhh... today? " It was such a sad and sweet question. It broke my heart. She was a little panicked. But when I told her tomorrow, she said ok. Tonight, we talked about it again. SHe is very hesitant and becoming kind of concerned. Her face showed quite a bit of fear, though she didn't fight me. It breaks my heart.

I am not sure what exactly they are looking for. I did get cancer ruled out. That is not what they are looking for with her platelets. Evidentally they are not producing enough to clot in the appropriate amoutn of time. That could be an issue with surgery. I am glad they caught it and want to look into it. The doctor sounded a bit confused as to what is causing this weird formation of platelets. She wanted us to come tomorrow so they can do some special test to evaluate the platelets closer. So, we face a possible new problem with my little girl. GOd is in control. Whatever it is, He will see us through. I am praying it is nothing or at least something only minor. I figure it must be simply because we have never had too much problem getting bleeding to stop. Nosebleeds take a little while, but they do eventually stop.

So, pray for her, if you wouldn't mind. I will fill you in whenever I get the results of this test. It will take a few days.

My baby is home! Yay! I am enjoying every minute of her. Jacob, Elizabeth and I met her just about half way. She had caught a ride with a good friend. We have had a full weekend with Em home and with Forum Show (similiar to a talent show). The above pictures are from the show. Erin was in a senior skit that was fun to watch. She is the 3rd "monk" (2nd full monk, you can only see the head of the first monk) from the left. Sam played in the jazz band. He is such a character. We spent a day with Mark's family on Sunday. Everyone made an extra effort to come and spend time with Emily. That was wonderful!

God has been teaching me many things lately. One is learning how to let go and lean on Him rather then my own strength. I need to go, I just wanted to add a few quick notes. I will post pics of Emily when I get my camera back. I left it at my in-laws and Emilys got "coke-logged"... (coke spilled on it and destroyed it; she is a very, very sad girl)

I wanted to share some other things going on. Sam is finishing up drivers ed and will be able to get his license soon. He turns 16 on March 21st. He and Erin are both in the forum show tonight, tomorrow and Saturday. Sam is performing with the jazz band and Erin is performing in a senior skit. Jacob is finishing strong in school. He, Mark and I have been going to the Y a lot lately; trying to work out and get into shape. It has been so much fun. Mark and I usually head into the Y at night. It has been nice to spend time with him even though we are both just working out. I haven't really worked out in 18-19 years... so this has been a really cool experience for me. I have longed to get into some routine, but life has always dragged me away. We often take Elizabeth and Ri with us. They have a babysitting room that the kids seem to enjoy going into. They also have a kids' zone where they can climb a wall (thus the pictures). They LOVE It. We have been able to take the swimming a few times; they think that is the best.

Emily is coming home tomorrow! Yeah!!!!!! I can not wait to see my girl. I have not held her in my arms since January! Oh how my heart longs for her. The coolest thing in her life right now is that she was accepted as a counselor for SkyView Baptist Ranch. I am so EXCITED for her!!! She will be an incredible counselor. She called me the other night and told me that she has already begun a prayer journal for her girls. She is praying nightly for each camper that she will be in contact with. How cool is that!!! I know that when my kids went to camp, the counselor made or broke the experience. Jacob had horrible counselors and thus he hates camp and doesn't ever wnat to go back to Skyview. Emily had great counselors and loved it. Erin was her own child and made her experience despite the counselor. Sam had a good one once and horrible one another time. The horrible one put a bad taste in his mouth.

As for Elizabeth and her tonsils, we see the hematologist tomorrow. I will know more then. The other night, when we asked the kids if there was anything they needed prayer for, Elizabeth very sweetly said "yes, that I wil not be afraid to get my tonsils out". It was the most precious request that I have ever heard. It melted my heart (and broke my heart as well.. knowing she is afraid and knowing what lies ahead).

Which leads me to this morning.... I really could use some prayer. AS a parent, it is heart-wrenching to see your child hurt; especially when it is a hurt that you are unable to do anything about. If a child is physically hurt, all you want to do is fix that pain.. give them medicine, get them to the ER or a doctor, hold them all night be by their side as they go through the pain. There have been too many moments that my heart ached simply because my child was in pain. I remember a few very vivid moments when I was so terrified and so helpless..... When Sam was just born, Erin had a fever of 103-4 and very lithargic. We took her to the doctor and were told she had an ear infection or something like that. The next day, she had sores in her mouth and was very miserable. Sam was only a week old and she was kissing him all over. We found out she had a virus that was very dangerous to Sam. She ended up with 40-50 sores in her mouth, down her throat... it was horrible. SHe was in MISERY for 2 weeks. I begged the doctors to admit her to the hospital because I was so helpless in relieving her pain. And to top it off, I had to keep her away from SAm. Anytime I held her, I had to scrub down before holding Sam. I was ripped apart; longing to take away her pain and terrified that Sam would contract it. Another vivid memory was when Jacob had a fever trapped in his body. He was shaking horribly, but no fever. Within an hour, his fever was nearly 106. The doctor described it as trapped in him and commenting how strong he must be to have endured that heat inside his brain. And when Emily was only 10 months old, she experienced the same spiked fever... from normal to 105 in less then an hour. She ended up needing surgery for her kidneys. At 4, she had to have emergency surgery for mastoiditis. I found out after the surgery how sick she really was when the doctor called at 1:00 in the morning to check on her. He told me that the infection was heading into her brain and we had just caught it in time. I remember the terror when Elizabeth had her first seizure and stopped breathing for a few seconds (hours to me) and the shaking of her little body... and the ambulance ride. And the horrible moments when I discovered Sam's foot staked to the ground and seeing the fear and pain in his eyes. Oh how it rips a parents heart out when your child is hurting.

And despite the pain I feel when my child is sick and I am helpless... I haven't decided which is worse: when they are sick or when they are emotionally devastated. Both rip me apart. The physical sickness often causes me more fear and concern. The emotional pain nearly destroys me. My heart aches so deep for my child. It is a different kind of heartache then when my child is sick. And right now, I have one child who is experiencing some VERY difficult things in their life. It isn't anything that I would want to share here, but I would ask for prayer. My heart is aching in ways I can't really explain. I am helpless except for prayer. Prayer is the answer, but sometimes it doesn't seem to be enough. I can't grab ahold of prayer. I know that be in the presence of God is the answer and that prayer is when I am in His presence... but right now it hasna't seemed to take that pain away for my child nor for me. It will; that I am confident of. I know that Romans 8:28 says that ALL things work together for the good for those who are called according to his purpose. I know it and I believe it. But I haven't yet felt it in this situation. I know I will, but when my child is hurting more then I have ever seen them hurt and for longer then I care to think... I feel helpless and I ache. So.. please pray for me. I need wisdom, godly words, godly actions, and a mothers love that is unfailing in a childs eyes. And PLEASE pray for this child. Growing up is not easy. Most of us have all felt the pain that my child feels, and I am confident that none of us want to experience it. It is part of growing up; but it is a part that is hard and sometimes can send you in the wrong directions. My child knows and loves God. THey are His child and He has a plan and a purpose for their life.



Well, that is about it for now. Have a blessed day.

My young son is looking more and more like a man. He had to dress up for a mellow jackets concert. They chose neon green and black. It was very cool.


Well, I think we are finally done with the snow unloading on us. Most of it has compacted so that it appears we have only had a few inches. I am anxious to get some nice weather to run around in. I have really missed taking the kids outside for walks.

A dear friend called yesterday to check on me. It was very sweet. She had sent me a few things and I had not yet responded and she noticed that I hadn't updated the blog for 8 days, so she was a little concerned that something was wrong. I LOVE having friends like her! I am fine. I have been a bit overwhelmed with the computer these days. I have been spending hours on the blog... scouring it for things about Sam. I am in the midst of writing his 16th birthday book. It takes so much time to find all the pictures, put them in the right order, and then find my journaling (or at least the journaling that might mean something to him). So far, the book is over 300 pages long. I am trying to do the majority of work while kids are sleeping or occupied and still have time to be with Mark. A long time ago, Jacob mentioned how much time I spent on the computer and not with him...so I have been trying hard to spend time with him at night when the little ones go to bed. Fitting the book in has been hard and I am finding that i am VERY crunched for time now. So... working on updating the blog has been shoved aside.

But I did want to pop on and update everyone just a bit. Elizabeth's hematology appointment in on the 12th at Childrens. We won't know anymore about the tonsilectomy until then. I will post it when I know anything. Emily comes home that day as well! Yeah!!!! I can't wait to see her. It has been 2 long months. She is having more issues with shaking and high pulse rates and exhaustion. She is scheduled for an echo of her heart, but after talking with our doctor, I think we will have her wear a heart monitor first. THat seems to make much more sense. The symptoms are probably just from her tremors, but we have to make sure her heart is ok. The continual increase rate is a little concerning and justifies ruling out any heart problems.

Everything else is going well. We are really enjoying some family time these days. It has been nice to have the kids home more often then in the fall. But... soccer has just started back up for Erin and Sam has just started up volleyball. We are back into the swing of life.