I received two quotes yesterday that really made me think about how special life with Alex is, so I thought I would share them.
The first was written by a mother of a child with mito:
Their spirit amazes you every day. They have such strength. Each day they teach you that you have so much more strength then you ever knew you had. They teach you things about the human spirit and experience that you would never have known existed if everything was okay. They teach you to sweat the small stuff because each one of those little things is so priceless.
The second was from an email:
God's will never takes you where God's grace cannot protect you.
I really strive each day to find the good in our situation. And I look it in the eyes every day. The Good is that little angel that God bleesed me with who could light up a room with his smile and bring a smile to your face with his contagious laugh. The good is also in all of you. God has put each of you into my path to share this journey. To be there for the good days and the bad. I am truly thankful for each and every one of you!
Alex and Maddy
Thursday, February 7, 2008
Wednesday, February 6, 2008
Some more good news...
I heard from the coordinator for the Medically Dependent Children's Program. Alex was approved at the highest level. We are just waiting on the medicaid application to get through now. We were given a $31,000/yr budget from MDCP for respite nursing care. We could get more nursing from Medicaid. I am looking into whether some of that budget can be used to pay myself since I can't work because of Alex's health. That would be a HUGE blessing.
We also heard from Gayla, Dr. K's coordinator. I should know tomorrow what tests they are planning on doing while we are there. If they want to do the muscle biopsy this trip, it will be done on the 20th and we will be inpatient until the 21st.
I'm sure I'll have more to update later!
Ali
I heard from the coordinator for the Medically Dependent Children's Program. Alex was approved at the highest level. We are just waiting on the medicaid application to get through now. We were given a $31,000/yr budget from MDCP for respite nursing care. We could get more nursing from Medicaid. I am looking into whether some of that budget can be used to pay myself since I can't work because of Alex's health. That would be a HUGE blessing.
We also heard from Gayla, Dr. K's coordinator. I should know tomorrow what tests they are planning on doing while we are there. If they want to do the muscle biopsy this trip, it will be done on the 20th and we will be inpatient until the 21st.
I'm sure I'll have more to update later!
Ali
Tuesday, February 5, 2008
Alex is still not quite back to himself. For about 3 weeks now, he has just been off. Nothing I can put my finger on, just different. He is still sleeping a ton, he has been really pale, his eyes don't look quite right. He isn't sick though so we don't know what to make of it.
We are so excited to go to Houston next week and hopefully start getting answers to all of our questions. The Dr. we are seeing has gotten INCREDIBLE feedback/reviews from the parents who have seen her. She is very parent/patient friendly and really cares about these kids. Dr's like this seem to be a dying breed, believe me!
Alex has been having a really rough time in therapy the last few weeks. Elizabeth and I have talked about it. We think some of it, is about wanting control, but some of it is just lack of energy. He has no desire to do anything that requires stamina. His frustration level is incredibly high right now. Once again, I think he just doesn't feel great, but we aren't sure why. Elizabeth is great with him. Her and I have the same temperment/philosophy. We both push him to do what he must, but in a loving way. Sometimes you just want to pick him up and hug him though. It is such a struggle for him at times. As a mother, I just want to make things easier sometimes even though I know it isn't in his best interest.
We had an endocrinology appt this morning. He looked at me and said," I'm really confused...I don't know why they sent you here". AHHHH! So he wants to talk to us/possibly see us back after we see the Dr. in Houston. Some of the testing he would normally do is contraindicated in kids with metabolic disorders so he wants Dr. K to decide what should/should not be tested. As always, the office staff loved Alex. Every where we go everyone falls in love with this little guy!
I changed Alex's button for the first time today! Alex did great (and so did Mommy)! I was a little nervous, but it was really easy. His belly looked so funny with just a hole and nothing there. Good thing we aren't squeamish! I made Bruce take pictures. But I won't torture everyone by posting that!
I am working with the pastor of caring and concern at our church to start a support group for parents of children with chronic health care needs. I meet with Leslie tomorrow and then we will put something in the church newsletter. There is definitely something special between Moms whose kids have to go through so much. We go through so many of the same struggles, physically, emotionally, and financially. It is a very different friendship then "regular" friends. I have gained so much from friends all over the country, I figured it would be great to meet some people right here!
Please pray for safe travel/productive appts next week. We are not sure how long we will be in Houston. We are excited to go. We will be meeting some of our new "internet" friends down there. It is always a treat for Buggy to meet other kids like him. They love to compare feeding tubes and play and talk.
Ali
We are so excited to go to Houston next week and hopefully start getting answers to all of our questions. The Dr. we are seeing has gotten INCREDIBLE feedback/reviews from the parents who have seen her. She is very parent/patient friendly and really cares about these kids. Dr's like this seem to be a dying breed, believe me!
Alex has been having a really rough time in therapy the last few weeks. Elizabeth and I have talked about it. We think some of it, is about wanting control, but some of it is just lack of energy. He has no desire to do anything that requires stamina. His frustration level is incredibly high right now. Once again, I think he just doesn't feel great, but we aren't sure why. Elizabeth is great with him. Her and I have the same temperment/philosophy. We both push him to do what he must, but in a loving way. Sometimes you just want to pick him up and hug him though. It is such a struggle for him at times. As a mother, I just want to make things easier sometimes even though I know it isn't in his best interest.
We had an endocrinology appt this morning. He looked at me and said," I'm really confused...I don't know why they sent you here". AHHHH! So he wants to talk to us/possibly see us back after we see the Dr. in Houston. Some of the testing he would normally do is contraindicated in kids with metabolic disorders so he wants Dr. K to decide what should/should not be tested. As always, the office staff loved Alex. Every where we go everyone falls in love with this little guy!
I changed Alex's button for the first time today! Alex did great (and so did Mommy)! I was a little nervous, but it was really easy. His belly looked so funny with just a hole and nothing there. Good thing we aren't squeamish! I made Bruce take pictures. But I won't torture everyone by posting that!
I am working with the pastor of caring and concern at our church to start a support group for parents of children with chronic health care needs. I meet with Leslie tomorrow and then we will put something in the church newsletter. There is definitely something special between Moms whose kids have to go through so much. We go through so many of the same struggles, physically, emotionally, and financially. It is a very different friendship then "regular" friends. I have gained so much from friends all over the country, I figured it would be great to meet some people right here!
Please pray for safe travel/productive appts next week. We are not sure how long we will be in Houston. We are excited to go. We will be meeting some of our new "internet" friends down there. It is always a treat for Buggy to meet other kids like him. They love to compare feeding tubes and play and talk.
Ali
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