On Monday I took Luke in to see his pulmonologist and gastronologist, I had put off these appts. for too long. On the one hand it was very encouraging and then on the other hand it was a bit discouraging. I guess we continue to ride this long bumpy roller coaster ride. Let me explain a bit more, his pulmonologist said that he seemed to be doing okay, he was a bit course when he listened to his lungs, which lately has not been the case. He told me that he doesn't need to come back for 6 to 12 months which was good news and he did not mention anything about putting the trache back in which was great to not hear. He did say that he thought we should see the dietician as his weight gain has not been so good since his last visit. This really bummed me since I know that he had gained at least 3 pounds over the summer, but because of all his throwing up for awhile he had lost 2 of those pounds. I was happy to tell him I was seeing the dietician and gastronologist after his appt.
I went on up to his next appt with his gastronologist and was told the dietician was not in, she had called in sick that morning so I was not able to see her. The gastronologist didn't have much to say, didn't even comment about us taking him off of his previcad, which had made me a bit nervous wondering what he would say, he examed him and said that he didn't think he needed to come in again for 12 months. He said that he would set up an appointment for Luke to have another swallow gram done to see if we can start feeding him by mouth, this was good news. One of the best part of these appts. was being able to say that Luke is off all Medications, one of the nurses thought it was a mistake and asked me if this was right as she was reading his record, it was great to say it was right. They don't see many kids like Luke with no medications.
So you might be saying Sue everything you've said so far has been good news, where is the bad news. I guess I left there thinking about the fact that they didn't want to see Luke back for a year, this means that they are thinking that there will not be any changes to him as is normal with his type of brain injury. I know that God is mighty and can change things quickly, but as we've experienced this past 2 years God has choosen to take us down a slower road of recover. Don't get me wrong I'm very happy that Luke continues to make progress, it's just some days it seems to be taking so very long. Yesterday was a bit difficult as Luke woke up with a fever and then threw up after his first feeding. I was crying out to God to touch him and Ezekiel who is my little prayer warrior said, "Mommy, lets prayer for Luke to get better today, maybe this is the day he will start to walk and talk again." Oh the faith of a child. Well I'm happy to say that God did answer our prayers, he began to feel better and last night when I put him to bed his oxygen levels where at 99 and his heart rate was very good again. He has been doing great without being on oxygen for quite a few nights now, which is a great answer to prayer. Though this is not the case tonight, he is back on a bit of oxygen tonight, I guess he's still not at 100% yet.
Just to let you know we began home schooling on Monday and this week has been a good week, we are getting back into a good schedule. I purposefully made Luke's PT and Natalie's Piano lesson on the same day at the same time, her teacher is flexible with me dropping her off a bit early, I'm hoping this will cut down on being out the house so often. My sister Cindy has been coming over each morning to help with Luke's feeding and doing some of his program with him, which has been very helpful. Joanne asked about his program, it is a program put together by a Neurodevelopmentalist, that includes patterning exercises, tastes of foods to help with his taste buds coming back to life again, special pin hole glasses to help him see better, lots of stimulation with toys and activities, a listening program we haven't got started yet and some other activities to help his brain reconnent. If you want more information you can e-mail me, as you can see we've put our e-mail address on the side of the blog so that any of you can e-mail us, we always enjoy hearing from you.
Here's a scripture that has really encouraged me this week, it is Hebrews 11:1 Now faith is the substance of things hoped for, the evidence of things not seen. I had memorized this verse many years ago and God gently reminded me that though I may not see His answer today, I still need to believe that it is coming. I hope that you have your faith renewed today and don't ever stop believing in your miracle, with God nothing is impossible!
Love in Christ,
Luke's Mommy Sue
Saturday, September 23, 2006
Monday, September 11, 2006
Luke gets an awesome report from his Neurodevelopmentalist evaluation
I want to begin by saying "thank you" for all your wonderful comments, it continues to amaze me that so many of you are still faithfully praying for Luke's recovery and reading this blog. So many of you have become wonderful friends even though we've never met in person, I just hope that someday I will be able to meet many of you face to face.
My sister Cindy and I took Luke up to Anacortes which is about a 2 1/2 hour drive for a Neurodevelopmentalist evaluation. It was will worth the drive as we received such a wonderful report. She was very encouraged by what see saw with Luke's progress. She said that he is definitely following commands, has sensation in all his limbs, is much more interested in what is happening around him, is ready to start moving with help and his muscles seemed to respond when she put him on his stomach with his arms in front of him and moved him forward. She thinks with a lot of stimulation and encouragement that Luke should begin to reach for toys very soon. When she asked him to reach up and touch my hand he actually did a few times, to say that we were excited is putting it mildly. She thinks that if we are faithful in doing the program she set up for us that we will begin to see big changes in Luke's abilities.
My prayer is that we can find some people that would be willing to help a few days a week to get Luke through all the exercises that she gave us to do with him. My sister Cindy said that she is willing to come over daily to help with Luke's feeding and program, I can never even begin to tell you how much this will help out. As I've said before it is very challenging to try to find the time to get all that needs to be done everyday, with Lily's care, homeschooling the children, keeping the house clean, cooking, going to the YMCA for PE and choir, piano lessons, Luke's PT and other appointments, you get the picture. I am really excited and hoping that this year Luke will stay healthy so that we can really get on a good schedule. I recently read in a book that said the only schedule we really need to live up to is the one that we fell the Lord is directing us toward, so I'm really praying for wisdom in knowing exactly what He wants me to accomplish each day.
We had a great camping trip, the weather was beautiful, we had some awesome days at the beach, we ate some delicious smores as we sat around the camp fire, played some fun games and Luke stayed healthy for the most part, though he had a few rough nights. We had a few unwelcome guests the raccoons decided to get into our food, they ate a whole loaf of bread, 9 eggs and drank quite a few of our sodas, or it could of been the skunk we saw run through our campsite.
Specific prayer requests for Luke, he continues to struggle with his feeding times, he continues to gag and throw up at least once a day, today though was one of the best days he's had in a while. Continue to pray that the congestion that he deals with so often will clear up once and for all. Last but not least the same prayer request that we've been asking for faithfully all these past two years is that his legs will become limber, that his knees will bend normally and his feet will come to point forward again.
I know many of you have been praying for Gabby, as her link is at the side of this page. I just want to ask you to keep her family in your prayers as she passed away on August 31st. It's hard to know why God chose to take her home at such a young age, but we know that He is sovereign and His ways are not always what we would chose. Her mom has been a blessing in my life, though I've never met her in person her blog has really ministered to me in ways I cannot begin to express.
May God bless you and keep you in His arms of love today.
Love in Christ,
Luke's Mommy Sue
My sister Cindy and I took Luke up to Anacortes which is about a 2 1/2 hour drive for a Neurodevelopmentalist evaluation. It was will worth the drive as we received such a wonderful report. She was very encouraged by what see saw with Luke's progress. She said that he is definitely following commands, has sensation in all his limbs, is much more interested in what is happening around him, is ready to start moving with help and his muscles seemed to respond when she put him on his stomach with his arms in front of him and moved him forward. She thinks with a lot of stimulation and encouragement that Luke should begin to reach for toys very soon. When she asked him to reach up and touch my hand he actually did a few times, to say that we were excited is putting it mildly. She thinks that if we are faithful in doing the program she set up for us that we will begin to see big changes in Luke's abilities.
My prayer is that we can find some people that would be willing to help a few days a week to get Luke through all the exercises that she gave us to do with him. My sister Cindy said that she is willing to come over daily to help with Luke's feeding and program, I can never even begin to tell you how much this will help out. As I've said before it is very challenging to try to find the time to get all that needs to be done everyday, with Lily's care, homeschooling the children, keeping the house clean, cooking, going to the YMCA for PE and choir, piano lessons, Luke's PT and other appointments, you get the picture. I am really excited and hoping that this year Luke will stay healthy so that we can really get on a good schedule. I recently read in a book that said the only schedule we really need to live up to is the one that we fell the Lord is directing us toward, so I'm really praying for wisdom in knowing exactly what He wants me to accomplish each day.
We had a great camping trip, the weather was beautiful, we had some awesome days at the beach, we ate some delicious smores as we sat around the camp fire, played some fun games and Luke stayed healthy for the most part, though he had a few rough nights. We had a few unwelcome guests the raccoons decided to get into our food, they ate a whole loaf of bread, 9 eggs and drank quite a few of our sodas, or it could of been the skunk we saw run through our campsite.
Specific prayer requests for Luke, he continues to struggle with his feeding times, he continues to gag and throw up at least once a day, today though was one of the best days he's had in a while. Continue to pray that the congestion that he deals with so often will clear up once and for all. Last but not least the same prayer request that we've been asking for faithfully all these past two years is that his legs will become limber, that his knees will bend normally and his feet will come to point forward again.
I know many of you have been praying for Gabby, as her link is at the side of this page. I just want to ask you to keep her family in your prayers as she passed away on August 31st. It's hard to know why God chose to take her home at such a young age, but we know that He is sovereign and His ways are not always what we would chose. Her mom has been a blessing in my life, though I've never met her in person her blog has really ministered to me in ways I cannot begin to express.
May God bless you and keep you in His arms of love today.
Love in Christ,
Luke's Mommy Sue
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