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.
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5 comments:
Hi,
I'm Cristina, mom to 3 year old Elyse with PHACE. We are from IL. Elye was diagnosed with PHACE when she was 4 weeks old. She has H - A - C - E.
It seems like you've been through a lot and I'm very happy to read that you are doing well.
I'm part of a wonderful private online group. You might of already joined, but if not... I invite you.
http://phacesyndromecommunity.activeboard.com/index.spark?forumID=121106&p=1
This site has help me and many families who have many unanswered questions or just need to vent.
take care and hope we can chat.
0Thank you Christina. I actually read your story and tried to join that group but for some reason the conformation link is not working. It is nice to know and see what other PHACE parents have gone though. We have Maxwell's eye appt today and this week he has to go have an EEG cause they think he may be having seizers. i hope we can figure out how I can join the group since this I am sure is going to be a long road!
i will check the site, i'm normally the one that confirms new members. check your email again or try the link i posted.
what is the user name you registered on?
stephanie, right?
ok. i see your profile. you should be able to log in with the user name and password you signed up with.
let me know if you are still having trouble.
Stephanie- what a gnarley year you and your family has had! Praise the Lord He is in control and not us, right? Thanks for stopping by my blog and checking it out. I was roommates with both Jenn and Jessica at CCBC. I love me some Jenkins! You, your son, and your family are in my prayers!
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