The results of some of the tests they did last week have come back and they were slightly elevated, but nothing to be concerned about according to the doctors. Some of these tests were to test his liver to find out why his direct bilirubin levels are still high. The results of the hide-a-scan, where they injected dye into his system, told us that his liver is taking it up fine but it is extremely slow to excrete it into the bile area. They don't know why this is happening so they are running more blood tests tomorrow. They are trying to find out if there is a blocked bile duct or if the gall bladder is swollen or if there is something else going on. In addition, they are going to do an abdominal ultrasound tomorrow and if the GI specialist can't find a reason for the liver problem, then they may have to do a liver biopsy. This is where they perform surgery on his liver and take a sample of it for more tests. I hope they can find out a problem with him so they can fix it. This last weekend, he was looking really yellow because of his high bilirubin levels. They decided to go ahead and give him a blood transfusion this week. They transfused part of it yesterday, and part of it today.
They took more blood from him to test for Cystic Fibrosis again. The first time they ran the test, it only tested for about 85% of the mutations of the gene. This time they are running an expanded panel to test for more of the rare mutations but it still won't cover all the mutations because they don't have the really rare markers to test for. They are running the CF test again because of the liver issue and some calcium deposits they found in the intestines which are indicative of a perforation of the intestines, which usually is found in babies with CF. So here we go again...
His eye appointment is on Thursday this week, and once again, if it has progressed to a stage 3+ then they will do emergency eye surgery.
One good thing that has been happening with the little one is that he's not so little anymore! He is continuing to gain weight and currently he weighs 1805 grams or 3 pounds 15 2/3 ounces. This means that he'll probably get over 4 pounds tonight. He is currently getting 35 ml's of breastmillk every 3 hours and he also has a lot of fat and nutrition supplements added to it to help him gain more weight.
I am at a loss of what to pray for because all of this is overwhelming. I want Matthew to be healthy with no problems or complications down the road, but I don't feel like that is going to happen. My faith is being tested and I don't feel like God is listening. I have been struggling with the power of prayer and accepting the outcome even if it is not what I want. There's a verse in the bible that says Lord, I believe, help me overcome my unbelief... and that is exactly how I feel today.
Jason and Jennifer: I found this in Beth Moore's Book "Praying God's Word".
"God, according to your word, You are not bothered by our requests. Once when others told a synagogue ruler not to bother You any more with his request, You ignored what they said and told the ruler, "Don't be afraid: just believe." (Mark 5:35-36) Help me not to be discouraged to pray and not to be afraid, but believe!
Lord, I just continue to lift up Matthew to you; that you will take complete control of his body. I also pray that you will continue to give Jason and Jennifer an overwhelming amount of peace that we know only you can provide. We know that you will never give us more then we can handle, and that you will give us the strength to get through any situation after we hand it over to you. We praise you.
We love you Jason and Jennifer, Seth and Dawn
ARGH! This I know must be frustrating. I also continue to pray for my nephew. God, I know my sister and brother in law do believe in your word and your works. It is your will that they go through these trials. I pray that they will continue to hold onto your love during this time. Lord grant them peace, grace, and your power to heal. Bless little Matthew with your love. If it is your will, heal Matthew Clay Beaver completely so that he can know you. Don't hold back any blessings that belong to Matthew. Send your angels to watch over him during this time.
I love you guys.
Anita
Jennifer,
I can only begin to imagine your hurt and frustration as Matthew's battles continue. I know the Lord loves you all and is keeping His arms around you even though you don't feel it now. Our worldly questions are not always answered when and how we want. Maybe through these tests something will be discovered and fixed that will make a big difference in his days to come. We pray Lord that Matthew does not have Cystic Fibrosis but if he does, we pray for a cure to this disease. Progress is being made. I know of a young lady who has lived a great life so far and just delivered her first child (she's in her early 30s). Matthew is a fighter and a very special little boy as are his parents. I pray for strength and peace to sustain you and Jason through the days to come. We love you all very much!
Jennifer:
I began struggling with HOW to pray when my mom got sick. Especially because I wanted to pray for MY will, not "Thy will be done". For a long time I stopped praying but I have discovered that we should be faithful in prayer. And God will remain faithful to us - by teaching us new things, giving us stregnth to face each situation, and even bestowing peace upon us when we have every earthly reason to not be at peace. Based upon your updates, I can see those things at work in your life. So I continue to pray for Matthew and you and Jason even though I still have questions about exactly how to do it. Keep holding on - God will see you through!!!
I love you,
Beth