Prayers For Maggie's Family

I just found out that precious little Maggie Mae went to be with Jesus. Please visit her website and pray for her family. http://www.curemaggie.com/index.html

TOUCHDOWN!!

Hey Everybody,

Just wanted to brag a little. Last night was the first game of the football sectional. We lost to the team that won the sectional last yr 42-20. Obviously that is not what I wanted to brag about. My son made his first touchdown for the varsity. It was a proud moment for this mother. :) It made sitting in the rain, under an umbrella, my rain poncho, winter coat, two pair of gloves, two ear warmers, two pairs of socks, two pairs of gloves, a turtleneck, sweatshirt and jeans, much more worth it!! Of course, it would have been worth it anyway (just not quite as enjoyable).

but we still have Sundays and the NFL. GOOOOOOO COLTS!!!!!!!

In Your Time Lord

Well, we had just gone to the nursing home and had a care-plan meeting for Kristin yesterday to tell them our wishes if she has another episode. We do not want to do any life-sustaining measures if it happens again. Kristin was doing well yesterday. I got a call about 5:00 pm that she had started again - high heart rate, diaphoretic etc. My husband and I went. She finally calmed down and fell asleep about 11:00. IF things run true to the other two times, today will be the biggie. We don't know what is ahead or what the Lord has planned thru all this. Please just pray that she will not have to linger and suffer indefinitley.

I have met another Christian brother who lives in FL and has his own blog. Please visit there and read his post from yesterday. He has really honored our family with this post and for that I am forever grateful.

http://www.moralscienceclub.blogspot.com/

God's Revelation

I am totally blown away by what God has shown me today. After church, the worship leader came up to give me a hug. She told me she understood what I was going thru with Kristin because of what she went thru with her disabled child 27 years ago. I knew she had lost a baby who had some problems, but I never knew any of the details. She shared with me and allowed me to ask questions. Although our children had different problems, they went thru some of the same things. She was honest with me about his death and what he and they had to go thru. It was just what I needed to hear. She answered some questions that no one else has been able to.

But the best part of His revelation came just moments ago as I was completing my Bible study time. I have began a new study by Beth Moore called "Living Beyond Yourself - Exploring the Fruit of the Spirit". Today's study was called "Crucified" and focused on Galatians chapter 2. Beth uses many scripture references to help gain the full meaning. She talked about and explored 10 characteristics of the Crucified Life.

1. Few will understand. (Matt. 26:36-46)
2. You must abandon your own will and your own agenda. (Heb. 12:2; 1 Cor. 2:9-10 Matt 26:56)
3. Your intimate spiritual companions will be few. (Matt 26: 36-39)
4. Intense times of aloneness with God are required. (Matt 26: 57-67: 1 Pet 3:15-16)
5. You will be constantly on the witness stand. (Heb. 13:12-14)
6. You must go "outside the camp". (Matt. 27:27-31)
7. There will be times when your dignity is forfeited. (Matt. 27:32-44)
8. You must forego your rights. (Matt 27:34,48; Heb. 2:9)
9. You must accept that death is painful. (John 20:1-18)
10. Because He was forsaken, you never will be.


As I read #9, I instantly thought about Kristin and what my urgent plea and struggle has been. "Lord please just take her and don't allow her to suffer anymore." During these last 6 weeks, I have endured watching her suffer, regress and raise many unanswerable questions. The last few days, I have especially questioned how much medical intervention is right anymore. If she continues to have these "episodes" should we continue to put her on the ventilator and give her the medications to keep her blood pressure up? "It is not like we are getting her well", I recently told my husband, "it is just getting her thru until the next time." I have talked to so many people trying to understand how much she will have to suffer if we don't choose to aid her in these ways anymore. I just want God to take her peacefully and her to not suffer. But as I read John 20 1-18, I was so struck by Jesus' words to Mary as she realized finally Who He was. "Do not hold on to me, for I have not yet returned to the Father. Go instead to my brothers and tell them, 'I am returning to my Father and your Father, to my God and your God'". vs. 17

WOW - it suddenly hit me that I can't have it both ways. Death is pain and the pain, agony and suffering Jesus endured for me, was horrible for God the Father to watch too. He understands my pain. But I need to focus on God's Will and not my own. I have been so selfish saying in essence, "God, You take Kristin, but don't make her suffer. Do it my way, cause I know best!" Which brings me to #10.

Because He was forsaken, you never will be. Forsake: (N) To quit, abandon, leave behind, cease from.

When Jesus had taken on the full load of our sin he cried out to the Father, "My God, why have you forsaken me?" My Bible commentary explains this passage so well. (Jesus was not questioning God; he was quoting fhe first line of Psalm 22 - a deep expression of the anguish he felt when he took on the sins of the world, which caused him to be separated from his Father. This was what Jesus dreaded as he prayed to God in the garden to take the cup from him (Matt 26:39) The physical agony was horrible, but even worse was the period of spiritual separation from God. Jesus suffered this double death so that we would never have to experience eternal separation from God.)

So, because Jesus paid the penalty for all the sins of the world, God will never abandon Kristin. That is the one thing she will never have to endure as part of her suffering. She will be absent from the body, present with the Lord. It will be instantaneous.

The hardest thing as a parent, is seeing your child suffer. We want to make their pain go away right now. We want to bear the pain for them. But most times, this is impossible. I have really questioned how much she would suffer if we withheld medical intervention, but now I see that that is exactly what God had to do. He had to watch his one and only Son suffer - so that we could live. I am going to have to see Kristin suffer, so that she can live, eternally with the only One who can take away her pain and suffering. I can't - He can... and will.

Thank you Father, for speaking to my heart today. Thank you for answering my urgent plea for wisdom. Only when I seek You, can I find peace. Only when I seek You, can I gain wisdom. Only when I seek You, can I know You and Your Will for my life. Pain does not mean You are not there - I see You now, more than ever. May Kristin's life bring glory to You.

Tuesday Update

Today they moved Kristin out of ICU. She is completely off the oxygen, vent and Dopamine and doing well.

I finally got to talk to her developmental Dr. today. He is the one Dr. she has that has been with her since birth. He said there is one thing preventing him from thinking these episodes are autonomic storms and that is her blood pressure dropping. He said that usually during a storm, the blood pressure is high, not low. He said low pressure is indication of dehydration or just how the body reacts to illness. He said he really didn't have any answers for me. He really couldn't find the cause of her problems. Well, I guess we will just have to wait and see if she has any more problems. I am thankful that I finally got to talk to this Dr. and know what she doesn't have.

I got to do some of my Bible study while at the hospital today and yesterday. God's Word is so awesome. I love how it ties together from book to book and we can never learn all there is to know, but time in the Word is never wasted. Nothing is more interesting to me. As I read and study, I am constantly amazed at the work of the Holy Spirit. I have stated, more than once, that what I believe has not come thru being taught by man, but by the teaching of the Holy Spirit thru study of the Scriptures. Today, as I was reading in Galatians, I read Paul's words that said the same thing. "I want you to know, brothers, that the gospel I preached is not something that man made up. I did not receive it from any man, nor was I taught it; rather, I received it by revelation from Jesus Christ." Galatians 1:11-12 My heart cries out - yes Lord, you are so good to open our eyes and help us see You.

Monday Update

Today they got Kristin weened off the ventilator, oxygen and dopamine. I'm sure she will move out of intensive care tomorrow. One of the cultures they did, from her trach secretions on Fri morning, finally grew something today. The Dr. who was caring for her today (it was his first day to work at this hospital) is convinced that it is this infection that caused all her problems. My husband and I are not so sure. If it took three days to grow something, it was not a very strong infection and her symptoms were extreme. I again brought up about the autonomic storming and why I was interested in investigating it, so he agreed to get Neurology involved. I thought they already were involved but nothing is ever sure since we went thru the weekend and Dr.s change from weekend to weekday. It gets so frustrating.

The good news is, she is coughing good again and her eyes seem to be better. She has not been as jerky - but she is having near constant spasms in her hands,arms and legs. She is very calm and docile - which is very unusual for her. They had her on the dopamine until today to keep her blood pressure up, so we are watching to see if her behavior changes now that she's off of it.

Please pray that tomorrow I can talk with her neurologist and developmental Dr.s and pray for clear answers. My concern is that they will again rule this an infection, send her back to the nursing home and then she will have another episode down the road because something else is behind these problems. It just seems there are some questions that need answering. Thank you for your prayers. We are blessed because of them.

Update

Life has kinda been like riding a roller coaster the last couple of days. Just when I think things are going good, they turn bad.

After Wednesday night's trip to the ER, I called and talked to the nurse in the morning and she reported Kristin was fine. Then I called and talked to her teacher to find out more about the details of her day on Wednesday. I also called the hospital to talk to Kristin's developmental Dr. and see if he thought she needed to be seen. I have questioned whether she can see at all or not and just had many questions as to what is going on with her. The Dr's assistant called me back and she let me tell her all that has been going on. She asked some questions and then started telling me about a disorder called, "autonomic storming". It is something found in a small percentage of patients with brain injuries. She described it as being a reaction to the autonimic nervous system which controls our breathing, body temperature, heart rate, etc. So these storming episodes occur when the autonomic nervous system loses control and causes a massive discharge of neuro transmitters, such as adrenaline to be released from the CNS. It can cause reactions such as, elevated temperatures, profuse sweating, increased heart rate, high respiratory rate, agitation, increased spasticity and large pupils. The more she talked it seemed we finally had a diagnosis. She said she would talk to the developmental and neurology Doctors and coordinate an appointment for us to talk to them. I felt relief that someone could finally tell me what the problem was.

About 3 hours later, the nursing home called to say they were sending Kristin to the ER because she was having some very severe symptoms. Her heart rate was very low, her respiratory rate very high and her oxygen saturations were low. To make a very long story short - she is again admitted in the hospital with almost identical symptoms to a month ago. This time though, her heart rate continued extremely high for a very extended period. I have mentioned the "storming" many times to every Dr. who is caring for her, but they have to run all the tests and treat the symptoms she is exibiting. Of course, once again, they are focused on finding and fighting the "infection" she has. It is so very exhausting to tell the story over and over and over and over and try to get them to understand why I think she is having the autonomic storming and not an infection. Time will tell. I hate that this has happened both times right before the weekend, because nothing much gets done over the weekend.

I just made copies of three different articles from the internet about this condition so I can try to learn more. I know it is not a good thing and I fear what is ahead for her. There is a battle inside of me as I fight to keep my emotions in check. I do not doubt that God has a plan and that His timing is perfect. But I still struggle with seeing my child suffer so. I begged Him all night to let her heart wear out and stop. Her heart rate was between 185-200+ for over 12 hours. I don't know how she can take that. And that is only a small part of what she went through. The scripture I was led to today was Psalm 27:14 "Wait for the Lord; be strong and take heart and wait for the Lord." (Thanks Susan!) Please keep us in your prayers and I will post updates as I can.

Back to the Emergency Room

Well, just when I thought things were going so good, I had to get the dreaded phone call. One of the nurses who regularly cares for Kristin called yesterday about 3:30 to tell me that she was acting like she was the day before she ended up in the hospital the last time. Her teachers took her back to her room around 2:00 and said she was not acting right and it reminded them of how she acted the last time. The respiratory therapist said she was not moving air thru the lower lobe of her right lung so they did a breathing treatment. She said it helped but she still acted aggitated. She was flushed, diaphoretic and moving in an aggitated way. They faxed the Dr. and she wanted her sent out to the Children's hospital to be evaluated.

I got to the nursing home before she was sent out and observed her eyes hugely dilated. Her head was fixed to the right and her left arm was swatting and fighting constantly. When the EMT's got there, I took off because with having to park in the parking garage it takes me longer to get in the hospital. I ended up stopping to grab a sandwhich and then got delayed in traffic and still beat her there, which I thought was very odd. When they got there and led me back, I found her clothes off and blood all over her shirt. THis alarmed me and I questioned it and the EMT told me she had a full blown seizure in the ambulance ride there. He had tried to put in an access line (not realizing she has a port) and with all her seizure activity, it ripped out. I questioned what he meant by her having a seizure and he described a locked arm, full convulsion episode. He said he was very surpised as he has never witnessed her doing this. I was totally shocked because she didn't seem that aggitated when they left.

She seemed to be more aggitated in the ER, with her eyes still very dilated and her jerky, swatting arm continueing. They could not get her blood pressure because she was so tense. After a couple hours of that, I decided to try to reposition her. I rolled her onto her left side and noticed an immediate change in her heart rate and respirations. She seemed to calm immediately. I rubbed her back and brushed thru her hair with my fingers and she really calmed. She even looked sleepy. There was a lot of activity in other rooms so it took quite awhile before they came back into check on her. By this time she was back onto her back and more aggitated. They again tried her blood pressure with no success. I told them to observe something and I rolled her on her side. Again she calmed right down and they were able to get her blood pressure with no problem. She finally fell asleep. The best part of watching her sleep was getting to see some smiles. She still has not smiled or cried since her last illness - so my heart melted to see her do it involuntarily.

Anyway, they did bloodwork and a urine culture, which all checked out fine. Since they couldn't find anything wrong, they sent her back about 1:45 am. I got to bed about 3:15 this am. Another long, frustrating night in the ER - with still no answers.

I continue to not understand the why's but I tried to find good anyway. I prayed on the way there of all the reasons to be thankful. I found several. And while waiting in the ER, I observed two families who seemed to have some pretty serious problems, so I prayed for them. God, I don't know what you are doing, but I am trusting in your ways and timing.

The Fieldtrip

Yesterday I went on a fieldtrip with my daughter, Kristin. We went to a place called Appleworks. It is an orchard, but they have other things too. It is a beautiful setting out in the country. They have a wooded area with picnic tables and several fun settings for pictures. They also have a wood dock/gazebo area, down on the water and a pretty waterfall. Best of all, they have a nice store where you can buy apples and other food items. This is our second time to go there.

I was a little concerned that an outing might be too much for Kristin, but she seemed to tolerate it well. When I got to the nursing home, she looked really good. Her eyes seemed better. Although she really wasn't focusing in on anything, they were not dilated and she was moving them around. I bought her a real cute corduroy skort and coordinating top, so she went in style. :)

Although she still has not smiled or cried, she seems to be getting back to her old self in some ways. She was coughing better yesterday, so that gives me hope. The weather was beautiful - unusually hot for October. I must admit I was pleasantly surprised because the day turned out better than I had expected. If I could only figure out how to post pictures I could share some with you.

Awesome Weekend!

Gosh, I guess it's been awhile since I posted anything. Is time going fast or what?! It is already October. Soon the trees will be beautiful here. It's after that I don't look forward to - WINTER!!

Many of you have inquired about my precious daughter, Kristin. She is doing ok. Her illness has had lasting affects, unfortunately. She continues to have problems with her eyes, in that it appears she is not focusing. We question whether she can see at all - as her eyes continue to be dilated and nonresponsive. It seems to me she is aware when I am there, but does not try to look at me or anything else. She has not smiled since before she got sick, nor has she cried. So her dancing hamster and videos no longer seem to be a source of enjoyment for her. Another thing we are concerned with is how she doesn't seem to cough much now. She has a lot of respiratory problems with a very productive secretion output thru her trach. She requires frequent suctioning, but used to cough well and help bring stuff up. Now this is very minimal. That is not a good thing. She has had a couple rashes that we can't explain. THe first was a breakout on her face and the second on her back. She was put on an antibiotic Friday for a possible throat problem. Some thought they saw blisters on one side of her throat and others didn't see anything. The Dr. only comes to the center on Wednesdays and they found this problem on Thurs. The Dr. prescribled the medicine without seeing her. We just keep hoping and praying she will smile and focus again, soon. Thank you again, for your concern.

Last weekend was awesome for me. Saturday evening, I had the blessing of hearing Mitch McVicker and friends at a local church concert. I did not previously know who Mitch was but am glad I do now. He was with Rich Mullens in the car accident that took his life, back in 1997 (I think) Mitch was severly injured in this accident and had to totally learn to talk, walk, eat etc. again. Mitch has amazing talent and a strong faith that encourages all who see him perform. Performing with him and by themselves were Sammy Horner, Brad Layher and Joe Curet. First to take the stage was Sammy. He is from Ireland and I enjoyed his accent and his humor very much. Next was Brad who has an amazing voice and stage prescence. He's pretty easy on the eyes too. :) Then Joe took his seat at the drums and they all combined their talents to put on one amazing show. I didn't want it to end. Soooo, I bought a DVD of Mitch (which includes Brad, Joe and Jeff Weiss) and a CD of Brad. They are really great guys living to bless others thru the talents God has showerd them with. And that was just Saturday. :)

Sunday, I had the thrill of going to the Indianapolis Colts game with my wonderful friend, Cindy. I never miss a Colts game but there is nothing like being there in person. We had a blast! They beat the Cleveland Browns 13-6!! We then went on to enjoy the evening by a fantastic dinner at Carabba's (where we had a very interesting conversation with our Lebanese waiter about faith and cultures) and fellowship. Her husband, Bob got to join us for that. I ended up staying all night with them and having a really nice little get away.

Well, that's about it for now. Please take the time to visit Mitch's website and read his biography. He is a precious brother in Christ.