So we had a narley week after my last post. EVERYONE in the house got a super bad stomach flu It was so bad!! Maxwell made a few trips to the hospital cause he was doing so terrible. Thankfully everyone is on the other side of it now!!!!! Man I felt like I was in the depths of hell these past few days! So anyways here is the update on Maxwell's appointments from yesterday.
Appointment #1 - Maxwell saw 2 dermatologist yesterday and they were very pleased with the way his hemangiomas looked. So pleased that she is probably not even gonna need to treat them at all!!! Praise the Lord for that one:) She also is in touch with a Dr at UCSF who actually named PHACE Syndrome. She is going to send all of Maxwell's info to her and see if she would like to join in on his case and maybe do a study on him. This was so great to here since one of the other PHACE mom's on my support group reffered her to us and I already tried to contact her. Praise the Lord, His hands are all in this. Maxwell's dermatologist is in contact with this Dr. everyday since they are good friends! So that was some good news!
Apppoinmtment #2- Maxwell saw the Nuero surgeon. He said Maxwell's brain looks good. He does have some fluid on the back of his brain but almost everyone does and that is fine. What is worring him is the tangeled mess of arteries that are everywhere. He doesn't know what to make of them and he said they are dangerous because if one of them ruptures he can have a stroke or die. So he is going to refer Maxwell to have an angiogram to get a better look at how his artieries and vessels are working. Some how (by the hand of God) he is getting blood to the right side of his brain even though his right coratid artery is a mess. He also said that there is a mess of viens that are most likly interfering with his hearing in his right ear. So he is going to have a hearing test done to see if he can even hear out of that ear. So we are kind of in a holding pattern for that part, again.
Appointment #3- Maxwell saw the geneticist 3 to be exact. They said yes, Maxwell does have PHACE and that they can not really give us a good outlook on what his life is going to be like. This disease is so new to them that they have no road map to follow. So we kind of just need to have him followed very closely(which we are doing) to try and catch anything that is going on. They tried very hard to connect all of the different problems we have had with ourselves and our children and they really couldn't make any connections. We just happen to be really lucky when it comes to bad luck:( I wish it was the other way around so that we could play the lotto!! Wouldn't that be nice. But I guess we could be rich but we would still have all these medical problems so what will that make a difference?? Well I guess it would help we wouldn't have to worry about how we were going to pay for all of these appointments and procedures:) Oh well, we do what we can.
So this thursday Maxwell has his echo which every doctor stressed that we have done soon. I will post with an update on how that goes afterwards. Please keep praying:)
P.S. Will someone please tell me how to edit these post for spelling. My spelling stinks and I can't find the spell check on here!!
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1 comment:
I'm soo happy to hear that your dermatologist will be in contact with Dr. Frieden.
one thing that you need to ask Neuro is if he Maxwell should be on Aspirin therapy (unless he is already on it). Many of the PHACE Children who have severe arteries malformation have to take Aspirin to prevent stroke. If your Neuro isn't sure, that's where Dr Frieden should come in.
another good person to contact is Dr. Steven Fishman in Boston, a PHACE family from the Netherland was recently referred to him.
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