Sunday, February 28, 2010

A wonderful smile

This morning is a beautiful sunny day and the little girl is happy. She was smiling this morning while her brother was enjoying holding her. She even laughed a bit - which is such a sweet sound. A great start to the week.

Saturday, February 27, 2010

My Sweet Girl

Well it has been another week. Good in that we did not have any doctor appointments, but hard because we are now officially on the MDCP program. What does that mean. MDCP - medically disable children program, a great program, but I never thought that I would have a child that needed it. I did not even know about such programs 6 months ago. It has been alot of work and so many hoops and then the final realization that your child qualifies for it. It is so hard to think about the future and how it will be so different for her than what I had planned. I only hope that she will be happier soon and that we can keep her comfortable. I think that this is one of the things that bothers me most. She is not happy so much of the time and I so want her to be. I want to make sure that she is not hurting. The more seizures that she has the more unhappy she seems - It has improved with the seizure medicine and we continue to work with the doctors and adjust things. I hold hard her and kiss her, as does my husband, her brother, along with the rest of our family and friends. She is so loved. I pray everyday that it would be me and not her. I know that our wonderful Lord has great plans and can do great things, and I also see that we are all being refined, but there are times when I can only beg for mercy. Thank you all for continuing to pray, it is what helps me make it through each day.
Next week should be better! We have two more weeks till spring break - a week to see family and a week with no therapy, a week with no appointments or schedules.

Thursday, February 18, 2010

Wednesday, February 17, 2010

Warm cake is so wonderful

On a happy note, today was the boys bible study for the 90 day bible. They have completed 1/3 of the Bibile so far and it is so great to hear them discuss what they have read and some of the lessons learned. For this weeks snack - cake! Right out of the oven with warm icing. The whole thing was gone in less than 15 minutes and it was so wonderful. It has been through the fire of the past 9 months that some of the simple things seem even more wonderful. We all need to live our life more like that of a 10 year old! Enjoy the moment and take it a day at a time. We don't know what tomorrow may bring, but God will provide - and it is all better with warm cake.
Love you all and I am so thankful for our many friends.

it keeps getting harder

Every doctor visit seems to bring more pain and heartache. Yesterday we spent over 2 hours with thew neurologist. He was wonderfully patient and went through scans, called consulting doctors, completely reviewed our entire case. The conclusion is that all of her brain injury was caused by some stupid, random infection that affected her while I was pregnant. This is slightly better in the long run when thinking that it was from a genetic cause, which is what the neurosurgeon was concerned about. The end result is still devastating - this beautiful little girl has a brain that does not work and the tissue is very abnormal. We have been told that her seizures will continue to get worse over time and change. Even the best doctors in the world would not be able to control then, but we will do the as much as we can while keeping her as alert as possible. He does not expect that she will ever be able to walk or talk. Her vision will probably remain extremely limited. She is going to continue to have problems with her tone, her hips will not grow right due to these issues and her case will remain extremely complicated. He expects that she will be severely mentally handicapped. it is wrong to have to discuss a shortened life span for your child and to think about some of the hard situations that we will be facing.
I continue to pray for guidance. I want to always make sure that we are doing what is best for her. It would be so much better if God would just go ahead and heal her.
thank you all for the prayers and notes - there are days when I just don't think I will survive and it the encouragement that comes at the right time that helps.

Thursday, February 4, 2010

Another hard visit

We were at Children's medical center bright and early for Molly's MRI. She was not happy at all with being bound up and the loud noise of the test. I was very hopeful as we finished the test and I could see some of the images on the computer screen. I knew from looking at her prior test that this one was better. The shunt was working and there was more brain tissue. We left the hospital to kill some time before our appointment with the neurosurgeon (he would read the scan before we would see him). I was so sure that we had made a major turn for the better and he was going to give us great news.

When we arrived to see him, he was not filled with good news. He had always been our very upbeat doctor, but not today. He came in quite serious and wanted to know how she was doing developmentally. I suddenly felt sick, realizing that this visit was already not going the way I wanted. He said that he had some good and bad news. The good news was that the ventricles are smaller, the shunt is working and that there is some brain regrowth. Then came the kick in the gut. The brain that was regrowing is very abnormal looking and the the fact that she is having seizures is a bad sign. He thinks that it was not what we originally thought it was that caused this, but some other issue that happened at a critical point in development. He is not sure if any of the regrowth that she will have will look normal and that the neurologist has the best picture of her future. I let him know that I don't like that outlook, and he returned to his kind disposition that we have seen before. He says that our neurologist is one of the best and is right most of the time, but not to lose hope - there are always those kids that really surprise us.

I know that there are miracles, and I am ready to see one! We love her no matter what. She is our angel and I know that God can work everything for good. I do wish that he would let us in on his plan. I am ready to hear from the burning bush or have one of those amazing experiences that we read about in the Bible. Until this past year, my path was always so clear. I did not have doubts on the direction that I should go. This year has been the hardest in our lives, but we will get through and we will get through together.

Thank you again for the calls and notes. It all matters.

Wednesday, February 3, 2010

Thursday - the big day

Well - Thursday is the day that we have our next MRI of the brain and see the neurosurgeon. We are hoping that the brain has grown and the fluid is decreasing. This is always a stressful visit and I am sure that I will not sleep tonight.
The good news is that she is making more noise and even laughing on the rare, sweet occasion. I want everything for this sweet little girl - I want her to be able to walk and crawl. I want for her to be able to look at my face and see me smiling at her. I want to hear her giggle as we play. These are the things I pray for each day. I know, one day at a time.
Thank you all again for all the prayers. We love you all!