Yesterday came and went with no news. However, today I did get very good news! The Johns Hopkins doctor has reviewed my medical records, surgical reports and lengthy application and has said they would like to see me! It kind of sounds like they are actually interested in my case where so far doctors have not wanted to see me because of the complexity of my problem. We don't have many details yet, but it sounds like I will go there mid-June. It may take 1-2 weeks because they have many tests they want to run, including a week hospitalization where they will monitor the pressure in my head. Hopefully we will hear more once they have worked on scheduling everything, but we feel that this is a big step in the right direction. Perhaps the most encouraging thing we heard is that when my sister Renae (who has been setting this all up) asked if they felt that they could help me, the nurse replied that she was very confident that they could help me! Wow!
I still have not heard from the doctors that we are hoping will do the shunt adjustment. I have a feeling that we are still going to have a hard time getting that done. Kyle asked me today how I felt about living the way I am until we go to Baltimore, and I suspect that might be what will happen.
This week has been going a little better for me. I have been able to get to the office in the morning for an hour or so to go through some paperwork, etc. Although I am not so productive, it has been nice to get out of the house. I have driven a few times when I felt well enough to. Last night Kylie had a choral concert and so Kyle texted me when her group was going up and I walked in and sat on a chair in the reception area where the noise is muted and wore my earplugs. I stayed just during the part she was in and then quickly left because I can't handle the noise or the movement with all the people walking around but was pretty happy that I did get that in. This morning I felt better than most mornings, and now tonight my head is hurting quite a bit more. Hard to understand why it changes so much, but I guess I just need to take it as it comes.
2 comments:
Prayers are with you! So encouraging just to hear a Dr see you and sound helpful! Millie
I am so glad to hear that the John Hopkins doctor will see you! That is such awesome news. It would be so wonderful if they would be able to help you! Praying that you will continue to feel some better as the weather improves and heads into summer soon. Thinking of you!
Post a Comment