Household Happenings

Rachel has had a tough couple of days here lately. Wednesday was good; but it went downhill from there. She is in a lot of pain; and tonight she started running a low grade fever. I will watch the fever tonight - if we still have one tomorrow we will need to take her back in.

On a lighter note, we had some plumbing problems in the bathroom the other day. After three hours of Rob trying to 'fix' the problem we went to bed and decided to fix it in the morning. The morning came - the problem remained. Rob tried a few more things and had to leave for work. The problem continued and got worse. Finally I had enough - a phone call to the local plumber and we were back in business! It made me laugh; because Zak's name for plumbers: "Toilet-guy". I am OK with that - not sure the plumber is; but at least all of us know who Zak is talking about!

Zak took a tumble at the park yesterday. He has half a nail torn off on one of his fingers and a nice big blue chin to prove the mishap. When I asked him how it all happened he proceeded to tell - make that show - me. I have to remember that you do not ask a autistic/visual learner child what happened. I can not even begin to count the times he has re hurt himself by showing me exactly what happened.

Anna is showing definite signs that she is 2 1/2 and was away from Mom for a week. My, the downhill slide in behaviour when a child is left without instruction! Lets just put it this way, you can tell she is a sinner! LOL. I have enjoyed being home with her, instructing her and rocking her in the past week. What a joy she is to my heart.

Abbey stayed busy while I was with Rachel at the hospital. Man can that girl clean!! She loves being a little homemaker and was in her element when the house was all hers. I think it stayed cleaner than when I am around.

James really missed me - and that really made me feel good. He has been wanting to be right with me all the time. I love seeing that there is still some little boy left in him! I have enjoyed the extra hugs and cuddle time with my man.

Rob and I were able to get some time away - just the two of us. We had not had much time before Rachel got sick and there has been none since she has been sick. We were able to enjoy the night out and just talk through a lot of things. There have been so many things going on that we have not had time to talk details and also just spend time reconnecting. It was a wonderful night out with my best friend. I needed the time away from here.

Thanks so much to all of your for your prayers. I have been so overwhelmCheck Spellinged by all that has transpired; and also at how much God has taken care of us through the love and concern of our Christian brothers and sisters in Christ.

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



The Unknown

Today we had several therapy evaluations for Rachel. It was very informative. They were able to explain what had happened to her nerves and what is going on in her body to cause the weakness.

The nerves that are affected are the peripheral nerves. These nerves have a coating that encases the nerve allowing the impulses to get to the brain quickly. What has happened is the casing has been damaged by the immune system mistaking the nerves as a virus and attacking the nerves as if it was an invading virus. Because of this attack the casing (myelin) that surrounds the nerves is damaged. This is causing the nerve impulses to get crossed and not make it to the brain like it normally would.

Right now we are dealing with the effects of the damaged nerves. We have quite a bit of therapy to go through to get things back the way they should be. For example, the nerves from her eyes to her brain have been affected. This is causing her to not be able to read and comprehend. She is able to read short things that have their meaning in one phrase ( IE text messages); but unable to take a book and read through a paragraph and be able to understand what she read in a paragraph.

Perhaps the hardest part today was when they had her write her name. She was able to print her name - although it took about 2 minutes for this to happen. When she finished it looked like something Zak would have written. (This was the part in the evaluation where I started to cry!) So, we are starting from the beginning at getting these skills down. There was a part of me that said, "Well, I taught her to write once - I can do it again!" Then there was another part of me that was absolutely devastated to find ourselves here. So many emotions.

We are having to relearn basic things like how to tie a shoe and button a shirt. Simple things like washing the dishes takes much time as she works through skills that she has lost.

We have to be honest to say that the fact that school starts in 5 weeks is never far from our minds. When she is sitting there trying her hardest to write her name - only to find that it is virtually impossible - the questions start to come. "Will this be better in time for school?" "How will we be able to help her get through school if this all is not back yet?" Unfortunately, there are no answers. We are just on a wait and see basis. So we will wait and see - and work and see how fast we are able to regain these skills. There is comfort in knowing that God knew this was going to happen a long time ago. He knows what the school year will bring and Rachel is in the center of where He wants her to be. God knows - and we will rest in that.

Thanks so much for your prayers. They mean so much to us.



Life Here At Home

It has been good to be back home. I could not believe how tired I was when we got to the house. It was like as soon as we walked into the house I was able to know that I could relax a little and rest. I pretty much fell asleep at the dinner table on Tuesday night. Rob told me I had to go to bed. I did not object!

On Wednesday, I was still feeling quite tired. Rob and the older kids went to church and I stayed here with the little ones and Rachel. After I got the little kids to sleep I thought I would lay down a little bit and rest. I did not get up the rest of the evening. I can not believe how a week at a hospital can take it out of a Mom!!

Rachel is still very tired and has heaviness in her legs and arms. We are trying to get her to use them as much as possible; but it is hard to know how much to do and all. We are looking forward to having her therapy sessions tomorrow to give us a better idea of what all she should be working on and doing while she is here at home.

We also will meet with the pediatrician tomorrow. I am looking forward to talking with her and finding out what her recommendations are for us now. While the diagnosis of Guillian-Baare has been given it has been disputed by several of the doctors. I am not sure why they want to run all these tests for her and then when the results are given they debate the results. This has led to a lot of confusion in my mind as to what we are up against and what the course of action should be. I would have to say I am a bit frustrated by it all at this time. I am praying that her doctor will be able to make some of these issues clear to us. Please pray for that at this time.

We also are busy getting our house ready to sell. We will be moving out of here in 4 weeks and there is a lot to do. We have been busy packing and doing a few projects around the house to make it a little bit more 'sell able'. At least we are not sitting around her bored to death!! LOL

Well, I just wanted to update you all on what things are here. Thanks for all your prayers for us and for Rachel - it means so much!


Tuesday Evening

We are home! Praise the Lord. We have changed things around here so that Rachel is able to sleep downstairs for awhile. The rehab team felt that she could go home without the assistance of a walker. We are thankful that God is bringing her strength back!

I have never felt so tired in my entire life. I have just collapsed since getting home and being in the familiar place. I will post more later. I am just too tired to write it all down right now.

Thanks for your prayers!

Tuesday Morning

Last night Rachel had an episode and we walked her through it they way will at home without the doctor's around. It was really neat to work with her through that time as her body was not being able to move and to just quote scripture with her and keep her thoughts on God. We continued to tell her that what was happening to her body was a normal part of the healing process. (This always causes some anxiety.) God was faithful and just ministered to her during that time. It was great to watch as she was able to relax - let her body be weak and trust God to bring her through.

The episode lasted about 15 minutes and her legs were paralyzed and numb for about 20 minutes longer, then everything returned to normal again. This will be the biggest challenge as we are home and getting her stronger there. Pray for Rachel to have a real sense of God's presence during those times of weakness.

She had a great night of sleep and we are ready for a long day ahead of us getting ready to go home. I will update as I can.


Update - Monday Evening

We are praising the Lord for definite and clear direction today. We have had a busy day with several evaluations. She met with her occupational therapist and was put through a series of tests that assured them she was ready to go home and continue her therapy on an out patient basis. Physical therapy was very pleased with their evaluation of her and gave the report that they were comfortable to also continue to work with her on an out patient basis. We were thrilled.

The case was then assigned to the rehabilitation team. They met with Rachel late this afternoon to evaluate as assess her abilities. They will be meeting tomorrow morning with all other therapist to develop a plan for her at home. They all have given the green light to release her to care on an out patient basis. We are looking at physical therapy 2-3 times a week for several weeks.

The doctor heading up the case met with us this evening and said that she is comfortable sending her home tomorrow. We have worked through a plan with her and also feel that God has given us a peace that it is safe to take Rachel home and continue to work with her there. We are thankful that God has made this so clear to us today.

As is routine for adolescent patients who have been in the hospital for an extended time, they wanted to do a psychiatric evaluation with Rachel. As we have dealt with these types of doctor's before in regards to Zak's care, Rob and I both felt that this was not in God's will for Rachel at this time. After talking with the doctor's God moved in their hearts to pull the orders for this evaluation. They agreed to have Pastor do an evaluation with her. We were thrilled to see God's hand work this situation out - as it could have posed a great conflict of interest in regards to the care we were looking to see Rachel get. Pastor met with Rachel and we are happy to report the doctor's were very impressed with his recommendations for her. God truly does move in the hearts of men - even when they are not believers.

The plan is to bring Rachel home sometime tomorrow. She is still going through times when her nerves are not allowing her muscles to work. This causes 'spells' where she is not able to move parts of her body. She also finds that her chest becomes heavy and it feels hard to breathe. Again, it is just the muscles 'taking a break', so to speak, as her body is going through the side effects of this particular syndrome. We have been able to set up a plan for her when these things happen to keep her mind focused on getting better, rather than not panicking because she feels short of breath. Pastor talked with her at length about just staying focused on truth during these times and trusting God. It truly would be hard for anyone feeling short of breath, unable to feel or move their legs and unable to see out of their eyes to not become a bit panicked at the effects of the syndrome. This will become our main goal for her at this time to work through these episodes - let the muscles respond the way they are going to and have her stay calm during the duration of the paralysis. Please pray for God's peace during these times.

We will keep you updated. While going home tomorrow it will be a full day getting all the orders from all the different departments. We look to have a busy day tomorrow and are not planning on leaving here until afternoon sometime. The therapists are also looking into the equipment she will need to be able to get around until her strength is back. We will probably be needing a wheelchair and walker and they are working with us as parents to know what we need to do in the home to have it safe for her to be able to continue her care there.

Thanks so much for your prayers. We are thankful that we will soon be home - and counting the hours till we can sleep in our own house. One week at a hospital is long enough for me!

Thanks for checking up on us and praying!

Update - Monday 5AM

We had a great day yesterday morning and afternoon. However, late afternoon Rachel began to feel quite tired and laid down for a nap. When she woke up she was having difficulty moving both of her legs. She also began to have a heaviness in her breathing. Her breathing tests went down in numbers and they gave her oxygen to make her comfortable. This 'episode' lasted about 3-4 hours. By late evening all symptoms had subsided - praise the Lord!

She had a good night sleeping; and is continuing to do so as I write this post. In fact, when I got up this morning and watched her sleeping so soundly I thought of the verse that talks about how the Lord gives His beloved sleep.

We have a busy morning coming upon is here. They have called in the top neurologist of the hospital to evaluate her and see if he thinks she is a candidate for a treatment they use in this Guillian-Baare'. We are praying for wisdom on his part to know exactly what to do; as the treatment has a long list of side effects. They also are talking about running more tests to help understand all that is happening in her body.

Here are a few prayer requests:

*The doctor to have a clear direction of what course of action to take in Rachel's care.

*For peace of mind and heart for Rachel. It is quite a scary thing to go from walking down a hall easily to not being able to hardly move. We have talked with her about what she needs to be thinking and verses to be dwelling on during these episodes. Pray that she will have a real sense of peace during these times.

*That my mind would be fixed upon truth. It is easy to let your mind get carried away in thoughts that are fearful. I need to rest completely in the Lord.

We are completely overwhelmed by the love and care we have received from our church family. I can not type that phrase without tears coming to my eyes. It means so much to us to see how God is pouring His love and care on us through our local church. We KNOW you all are praying - and that means more than I could ever be able to express!! Thank you!

On a happy note, today is my husband's birthday. Happy Birthday Rob!

We will update as we can. Thanks again for your prayers.


Saturday Update - 2

It is Saturday afternoon. We have had a wonderful day. Rachel seems up beat, has some color in her cheeks and feels stronger in her extremities. We are praising the Lord.

She did quite a workout with her physical therapist this afternoon. She was able to do six stairs! We were quite excited about that. She has had some weakness to the left leg return this afternoon. Seems after she works for awhile the weakness is more prevalent; but all part of the recovery plan.

She continues to be on a 'soft' diet and will be through the weekend. She has had some swallowing issues in her throat due to the nerve issues. We are praying that resolves this weekend.

She has so enjoyed having visitors. It brightens her day to have people come and see her. Thanks to everyone who has come! She has been sick for so long that she has found herself missing being able to be with her friends enjoying the summer.

We are thanking the Lord for the good day. Thanks so much for your prayers.


Sat Update - 1

It is Saturday morning - 4:30 am. I am thankful to say that we have had a very quiet night. Praise the Lord. Rachel has slept through the night and we did not have any problems. God is good.

We will see how the day ahead of us goes. It really is an hour by hour wait and see process. The doctor said that we are staying in the hospital at least till Monday. While I do not like a longer stay - I am thankful that at least we can plan the weekend out.

Thanks so much for your prayers. They mean so much.


Update Friday - 9 PM

Rachel was moved out of PICU this afternoon. She is in a normal room and had a pretty good afternoon.

However, tonight is starting very similar to last night - and that was not a pleasant night! Pray for added strength for her and wisdom for the doctors as they make decisions about her care tonight.

Thanks to everyone who has been praying. So many have done so much for us already. I can not even begin to tell you how much this all means to us. THANKS!!

Will update as I am able.


Rachel update 1

We are in need of your prayers. Rachel was admitted on Tuesday at Children's Hospital.

Due to extreme weakening of her legs and arms the doctor's felt that she needed to be admitted to the hospital for evaluation. A spinal tap was run, an MRI and several other unpleasant tests have been done in the past several days. Yesterday she was given a diagnosis of Guillian-Baare' syndrome. We have a long road of recovery ahead of us.

Early this morning she was having trouble breathing and being able to move. She was admitted in the PICU at Children's at that time. She is doing better this afternoon and there is talk of getting her back to her normal floor. We will wait and see.

She did do two laps around the PICU this morning. We are excited that the set back was not for a long period of time. We do however, have the evening hours ahead of us and we would covet your prayers that tonight will be uneventful.

I will keep posting as I have time; although I do feel like we are in a completely different world here. Thanks so much for your prayers. They mean so much to us at this time.


All I Need

I feel an unrest within my soul. Plans that I have made have changed. I look at my resume and realize that there is not much to write. I get up for my day to repeat the same things I did the day before. I feel stuck.

Then, I sit for just a while to spend time with Him. He reminds me I am His - He is mine. He never leaves, is never taken by surprise and nothing I do merits His love for me. He loves me just like He did yesterday; and like He will two years from now. It does not depend upon me. He loves me like before - like always - forever.

I listen as He speaks. He has my name grafted upon the palms of His hands. He prays for me. He thinks of me often. He cares. He is moved with my frustration; and He quietly whispers peace.

He calms the sea of confusion in my mind with His word. He brings the calm, the peace. I sit with Him and realize that He is my all. Nothing else is needed. Christ and Him alone. Close to His side my plans can unexpectedly change - and still I can rest. He has it under control.

So I walk not certain of the future; but sure of Him. Confident that when my life seems uncertain He will allow me to see Him more clearly. Drawing me closer to His side. I lay upon His chest and rest. Allowing Him to love me and my thoughts to be of Him.

"Behold, I have graven thee upon the palms of my hands..."

-Isaiah 49:16

Happy Birthday

Thirteen years... a long time.

She came into our lives today... thirteen years ago today.

She stayed for just a little while.

We will always remember this day - the day God added to our family a little girl. Allyssa Hope.

I think of her and wonder ...

What would she look like?

What would her personality be like - quiet? out going? driven? passive?

Would she be tall or short?

Would her hair be curly or straight.

I think of her and I wonder.

I think about this day and can not help but think about all that has happened since then.

God gave us another baby - homegrown.

God gave us two more children - hand picked.

Great grandparents have been united with Ally in Heaven.

Time has healed the deep wounds of grief.

The scars are still there.

When touched firmly the scar still hurts - it always will; but the debilitating limp is gone.

I have laughed and loved since then.

Life has gone on.

God has been so good.

Happy Birthday, Ally.
We miss you. We will always love you. We will never forget you.