Thursday, February 18, 2010
I really stink at updating
So I guess last time I updated Max was going to see the cardiologist. We got some great news in that department!!! His heart was totally normal!!! So I am guessing Maxwell's offical diagnoses will be PHACE Syndrome but he only has the H-A-E parts. Also he is being reffered to the Dr. who coined the term PHACE syndome. She is the one who knows just about all there is to know about and how to treat this mess. We are hoping to see her by next week since Maxwell seems to be having some issues right now. So anyways I will try to do better about the posts. We are hoping and praying for some concret info and treatment for him very soon!
Thursday, February 11, 2010
hearing appointment
So today we only had a hearing appointment for Maxwell and she said as far as they can tell he can hear out of both ears:) The only thing is we still don't know how one of the malformations in his ear is effecting him. I am gonna call the dr today to see what else they can do to find out why he is so fussy, vomiting, sleepy and crying all day long!!! Tomorrow is his cardiologist appointment at 1:30p.m. so PLEASE PLEASE pray!!! Thanks
Tuesday, February 9, 2010
Maxwell update
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!!
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!!
Wednesday, February 3, 2010
More info...
Maxwell had his EEG today. His neurologist said it looked normal so we just have to keep watching him and that he may be having them but we didn't catch one today so we will see.
Monday we go back to Oakland to meet with the dermatologist, the neuro sergon, genetisis and the nuerologist. they will be able to give us a lot more info on each one of his problems. I am still trying to get him in sooner to see the cardiologist for his echo but as of right now he is set to see her a week from friday.
So please keep praying if you will. This is so stressful on our entire family. Thanks
Monday we go back to Oakland to meet with the dermatologist, the neuro sergon, genetisis and the nuerologist. they will be able to give us a lot more info on each one of his problems. I am still trying to get him in sooner to see the cardiologist for his echo but as of right now he is set to see her a week from friday.
So please keep praying if you will. This is so stressful on our entire family. Thanks
Tuesday, February 2, 2010
Update on Maxwell
Maxwell had his eye appointment today and got diagnosed with Right sided Horners Syndrome. I guess is caused by damage to the sympathetic nervous system. It isn't gonna make a difference in his vision at the moment and he will probably need glasses but that isn't that big of a deal. So that was some good news I guess. Here is a little bad news. Maxwells neurologist thinks he may be having multiple seiziers during the day so they got him in at 8:30 a.m. in Oakland for an EEG to see what is going on. Since we are going to be there tomorrow we are hoping to meet with dermatology, the vascular radiologist, the neuro surgeon and the genetisis. Please pray for us tomorrow as we battle rush hour traffic in the bay area, for our sweet cousin who is coming to watch our other kids and for all the doctors that they would know what to do for him and that they would squeeze us in since we are going to be there I will post another update as soon as I have one.
P.S. I stink at spelling and this new blog thing doesn't edit it??? so excuse the mistakes:)
P.S. I stink at spelling and this new blog thing doesn't edit it??? so excuse the mistakes:)
Monday, February 1, 2010
Long time no write....
So I finally was able to sign into my blog!!! Some of my family members were wondering if I was ever going to post again and I guess it is time to do that now.
ALOT has happened since my last post. Let's see I had cancer, chemo for a while and now it has been 7 months since my last treatment and so far so good. I should officially be cancer free in June! We are so thankful that the Lord brought us through that very hard time in our live. So so many people had a hand in holding our precious family together and I can't even begin to list everyone but am looking forward to Thanking everyone of you when we are together in our eternal home!!!
Now this year we were hoping that we could start off this year on a better note with no major illnesses and just a break from the stresses that once were. Well It looks like God had another plan. Last week we found out Maxwell is gonna be facing some tough hurdles in his little life. What seemed as just a problem with his Hemangioma on the side of his face turned into a major medical problem that we are going to have to face for the rest of our lives. Maxwell was diagnosed with PHACE Syndrome. Here is a little bit of what it's all about:
PHACE Syndrome which is a combination of different abnormalities. Each letter stands for a different abnormality:
Posterior fossa- These are brain malformations that are usually present at birth. These brain malformations do not form after the infant is born.
Hemangioma- The hemangioma usually covers a large area on the skin of the head or neck (greater than 5 cm). The term "segmental" is sometimes used to describe these hemangiomas.
Arterial lesions- The abnormalities of the blood vessels in the neck or head.
Cardiac abnormalities/aortic coarctation- These are abnormalities of the heart or the blood vessels that are attached to the heart.
Eye abnormalities.
So far we know for sure he has the "H" and "A" part of it. Only the Lord knows haw this is all gonna turn out and why He is allowing our family to go through yet another crazy rare medical situation. As if losing a child six years ago to a rare heart condition, getting pregnant with triplets losing two of them and then problems with my pregnancy Maxwell being born with facial palsy, me almost dying a few weeks later only to be diagnosed with a rare cancer????????
Looking back it is just so amazing to me that we have gone through so much! But you know what we are still here stronger than ever before and it's only because God's grace has carried us through! So here we go again Lord, clinging to the One who sacrificed so much for us. James 1:2-4 Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, 3 because you know that the testing of your faith produces perseverance. 4 Let perseverance finish its work so that you may be mature and complete, not lacking anything.
So as we go through this not only is God working we know He will work through all of you too. So please keep praying for Maxwell. Here are some of the things he needs prayer for:
2/2/10 eye appointment to check if his vascular abnormalities are effecting his vision.
2/12/10 Echo cardiogram to see if his heart has been effected by the vascular abnormalities
Ongoing would be for physical comfort for Maxwell he has been very fussy lately and we are unsure if the vascular abnormalities are causing him pain right now.
Right now the Nero surgeons, vascular radiologist and genetics are pouring over his file to see how we need to approach everything. Please pray for wisdom and understanding as they do this.
And last but not least prayer for our other children that they would give us grace while we are dealing with us and that we would be aware when they are struggling so we can make sure we are not being consumed with our own things and still loving and caring for them.
A few things to be thankful for already are Maxwell's liver and kidney's are NORMAL!!! And when the neurologist saw his brain scan she said is looked good:)So I guess that is all for now. Praise the Lord everyone else in the family is healthy right now. I will update again when we know more.
ALOT has happened since my last post. Let's see I had cancer, chemo for a while and now it has been 7 months since my last treatment and so far so good. I should officially be cancer free in June! We are so thankful that the Lord brought us through that very hard time in our live. So so many people had a hand in holding our precious family together and I can't even begin to list everyone but am looking forward to Thanking everyone of you when we are together in our eternal home!!!
Now this year we were hoping that we could start off this year on a better note with no major illnesses and just a break from the stresses that once were. Well It looks like God had another plan. Last week we found out Maxwell is gonna be facing some tough hurdles in his little life. What seemed as just a problem with his Hemangioma on the side of his face turned into a major medical problem that we are going to have to face for the rest of our lives. Maxwell was diagnosed with PHACE Syndrome. Here is a little bit of what it's all about:
PHACE Syndrome which is a combination of different abnormalities. Each letter stands for a different abnormality:
Posterior fossa- These are brain malformations that are usually present at birth. These brain malformations do not form after the infant is born.
Hemangioma- The hemangioma usually covers a large area on the skin of the head or neck (greater than 5 cm). The term "segmental" is sometimes used to describe these hemangiomas.
Arterial lesions- The abnormalities of the blood vessels in the neck or head.
Cardiac abnormalities/aortic coarctation- These are abnormalities of the heart or the blood vessels that are attached to the heart.
Eye abnormalities.
So far we know for sure he has the "H" and "A" part of it. Only the Lord knows haw this is all gonna turn out and why He is allowing our family to go through yet another crazy rare medical situation. As if losing a child six years ago to a rare heart condition, getting pregnant with triplets losing two of them and then problems with my pregnancy Maxwell being born with facial palsy, me almost dying a few weeks later only to be diagnosed with a rare cancer????????
Looking back it is just so amazing to me that we have gone through so much! But you know what we are still here stronger than ever before and it's only because God's grace has carried us through! So here we go again Lord, clinging to the One who sacrificed so much for us. James 1:2-4 Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, 3 because you know that the testing of your faith produces perseverance. 4 Let perseverance finish its work so that you may be mature and complete, not lacking anything.
So as we go through this not only is God working we know He will work through all of you too. So please keep praying for Maxwell. Here are some of the things he needs prayer for:
2/2/10 eye appointment to check if his vascular abnormalities are effecting his vision.
2/12/10 Echo cardiogram to see if his heart has been effected by the vascular abnormalities
Ongoing would be for physical comfort for Maxwell he has been very fussy lately and we are unsure if the vascular abnormalities are causing him pain right now.
Right now the Nero surgeons, vascular radiologist and genetics are pouring over his file to see how we need to approach everything. Please pray for wisdom and understanding as they do this.
And last but not least prayer for our other children that they would give us grace while we are dealing with us and that we would be aware when they are struggling so we can make sure we are not being consumed with our own things and still loving and caring for them.
A few things to be thankful for already are Maxwell's liver and kidney's are NORMAL!!! And when the neurologist saw his brain scan she said is looked good:)So I guess that is all for now. Praise the Lord everyone else in the family is healthy right now. I will update again when we know more.
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