JollyRoger
Shared on Wed, 06/13/2007 - 14:25Some folks haven't had the chance to register at Megan's care page, so I thought I would post the most recent update. If you want, and have forgotten to register, go to www.carepages.com, register an ID and a password, go to Megan's carepage (megancochran) all one word all lower case, just like you see it there. Any how, here's the most recent update. A visit to the Neurologist:
(SIGH) Well we went to see Neurology today and I wish I could say we had some really insightful news but that is not the case. Basically he said the same thing that all her other doctors have said and that is we don't know what is in store for Megan. He said we do have to be very aggressive with Megan when it comes to her getting sick. A small cold has the potential to be very dangerous for her, which we already knew that. Pretty much if she is getting bad, we don't even think of waiting to get her to the hospital. He also said basically it is a wait and see disease. How, when and where are totally unknowns. He said that it is so difficult to deal with not knowing and he is totally correct about that. And yes he said that same thing that all of her other doctors have said, which is "I am so so sorry". It's not a good feeling when they all say that. We are pretty sure that even Dr. Schoffner has no idea how this is going to end up. We all know only God knows anyways so I guess we need to stop trying to control this, huh? It is just hard for the both of us because we know what could happen and it is scary, she is our child, you know? I am not sure if you ever get used to this but I guess at some point we will learn to live with the disease. We have been living our lives this way for over 15 months now. Not knowing when she was going to get sick again. Wondering when we were going back to the hospital and a few times wondering if she was going to come out. The only difference now, is we have a name and we know it may not end good. Wow, talk about having to let go of control! It's really hard and I mean REALLY hard! I told Jim today that Megan is such a strong little girl and I pray she continues to be that way. He said that we need to pray that she realizes that God made her special and help her to deal with this. She will eventually have questions as to why she is this way. Why she has a feeding tube, why she is always sick and why she is always tired, amongst many other things. What if she asks if she is going to die? Oh thinking of that gave a very big lump in out throat. I pray she realizes that she is so very special and that her feeding tube is actually a blessing and if kids make fun because of it (you know how kids can be sometimes) that she will be strong enough to stand up for herself and tell them how God used her and is continuing to use her. We have somewhat come to grips, kind of sort of but not really (were still working on it) that we have no idea what the future holds for Megan. We don't even know what this is going to do to her tomorrow so we are going to live minute to minute. We know from that past 15 months that things can change that fast. She is such a treasure. Man we sure are blessed. How ever long He gives her to us, we are going to make sure we enjoy every bit of it. Praise God for good days and Praise God for carrying us through the tough days. Also, Megans diarrhea has started back again. Please pray that will subside.
On a side note, we talked to her doctor today about getting help from the MDA and he said that do not take cases as young as Megan. That was very frustrating because they could have helped us out with meds, maybe formula and doctors bills until we were able to get on Katie Bekkett. Now we are back to square one. Please pray that a door will be opened up very soon. Thanks guys! Have an awesome evening. God Bless! p.s I posted two more pics of Megan, as if you guys didn't have enough to look at already! :)
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JR
(SIGH) Well we went to see Neurology today and I wish I could say we had some really insightful news but that is not the case. Basically he said the same thing that all her other doctors have said and that is we don't know what is in store for Megan. He said we do have to be very aggressive with Megan when it comes to her getting sick. A small cold has the potential to be very dangerous for her, which we already knew that. Pretty much if she is getting bad, we don't even think of waiting to get her to the hospital. He also said basically it is a wait and see disease. How, when and where are totally unknowns. He said that it is so difficult to deal with not knowing and he is totally correct about that. And yes he said that same thing that all of her other doctors have said, which is "I am so so sorry". It's not a good feeling when they all say that. We are pretty sure that even Dr. Schoffner has no idea how this is going to end up. We all know only God knows anyways so I guess we need to stop trying to control this, huh? It is just hard for the both of us because we know what could happen and it is scary, she is our child, you know? I am not sure if you ever get used to this but I guess at some point we will learn to live with the disease. We have been living our lives this way for over 15 months now. Not knowing when she was going to get sick again. Wondering when we were going back to the hospital and a few times wondering if she was going to come out. The only difference now, is we have a name and we know it may not end good. Wow, talk about having to let go of control! It's really hard and I mean REALLY hard! I told Jim today that Megan is such a strong little girl and I pray she continues to be that way. He said that we need to pray that she realizes that God made her special and help her to deal with this. She will eventually have questions as to why she is this way. Why she has a feeding tube, why she is always sick and why she is always tired, amongst many other things. What if she asks if she is going to die? Oh thinking of that gave a very big lump in out throat. I pray she realizes that she is so very special and that her feeding tube is actually a blessing and if kids make fun because of it (you know how kids can be sometimes) that she will be strong enough to stand up for herself and tell them how God used her and is continuing to use her. We have somewhat come to grips, kind of sort of but not really (were still working on it) that we have no idea what the future holds for Megan. We don't even know what this is going to do to her tomorrow so we are going to live minute to minute. We know from that past 15 months that things can change that fast. She is such a treasure. Man we sure are blessed. How ever long He gives her to us, we are going to make sure we enjoy every bit of it. Praise God for good days and Praise God for carrying us through the tough days. Also, Megans diarrhea has started back again. Please pray that will subside.
On a side note, we talked to her doctor today about getting help from the MDA and he said that do not take cases as young as Megan. That was very frustrating because they could have helped us out with meds, maybe formula and doctors bills until we were able to get on Katie Bekkett. Now we are back to square one. Please pray that a door will be opened up very soon. Thanks guys! Have an awesome evening. God Bless! p.s I posted two more pics of Megan, as if you guys didn't have enough to look at already! :)
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JR
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Submitted by ekattan on Wed, 06/13/2007 - 16:02