It's never gonna end....

I got a call from one of Dr. Frieden's fellows today. The Vascular Anomalies Clinic met today at UCSF and Dr. Hess (their radiologist) looked over Maxwell's MRI/MRA. He discovered Maxwell does have the brain abnormalities associated with PHACE Syndrome. He said his cerebellum is abnormal and the structure of his Pons didn't form properly. They said he is going to experience developemental delays. This also explaines his facial palsy. He is also experiancing diminished muscle tone, that is why he collapses at times because he doesn't have the muscle strength to hold himslf up. For some reason Kiaser didn't put Maxwell's MRI on the disk that they have as UCSF so we will get more info when they receive that. They would like him to also get a true hearing test done when he gets his throat scoped as well as a GI swallow test. So I guess now Maxwell has P-H-A-E of PHACE Syndrome. He has many more appointments coming up and I will keep you all posted as we get new and more info. For now here is some info on what the abnormalities in his brain may mean.

Cerebellum - The cerebellum integrates information from the vestibular system that indicates position and movement and uses this information to coordinate limb movements.

Pons - The pons contains nuclei that relay movement and position information from the cerebellum to the cortex. It also contains nuclei that are involved in breathing, taste and sleep

The cerebellum is folded into many lobes and lies above and behind the pons. It receives sensory input from the spinal cord, motor input from the cortex and basal ganglia and position information from the vestibular system. The cerebellum then integrates this information and influences outgoing motor pathways from the brain to coordinate movements. To demonstrate this, reach out and touch a point in front of you, such as the computer monitor -- your hand makes one smooth motion. If your cerebellum were damaged, that same motion would be very jerky as your cortex initiated a series of small muscle contractions to home in on the target point. The cerebellum may also be involved in language (fine muscle contractions of the lips and larynx), as well as other cognitive functions.


The cerebellum, located beneath the occipital lobe and posterior to the medulla and pons, is an important regulator of motor function. It connects to the brainstem by three paired bundles of nerve fibers called the superior, middle, and inferior cerebellar peduncles. Integrity of the cerebellum is necessary to perform smooth, accurate, coordinated movements; to maintain posture; and to learn and regulate complicated motor patterns. Damage to the cerebellum does not produce muscle paralysis or paresis (weakness), but rather a loss of muscle coordination called ataxia

The cerebellum is a relatively large portion of the brain located near the brain stem that is primarily responsible for motor movements, but may also play a role in speech, learning, emotions, and attention

I haven't wanted to post....

anything since there is nothing really new to post. Well I guess there is it's just not what I had hoped for. So friday we saw Dr. Frieden and she was very kind but we were expecting to see all of the specialty Dr's that day to get more info and that didn't happen. She bacisally told us that we are heading in the right direction and instructed us on anything else we weren't doing already. She would like us to get the following done on Maxwell.

-Scope of his throat by ENT to see if his airway is narrowing from the hemangioma in his throat. (this is in the process of being set up and the dr who is doing it said he can fix whatever if any problem there is while he is in there. Max will have to stay the night in the hospital after the procedure if that is the case)

-Talk to his nuero surgeon about his risk for stroke.

-have his opthomologist specificaly check his retnas

-have a hearing test that checks his brain waves instead of the one where he turns his head toward the speaker and toy.

Micah asked her can we hope for a normal life for him and she said sure you can but don't go bury your head in the sand and pretend there is nothing wrong She said some of her patients are in school now and doing good, they may be a little more clumsy than most (I guess from the lack of oxygen to the brain) but some of them are develpentaly disabled. We kind of have to wait and see what happens. In the meantime she doesn't want to see him in the Vascular Anomalies clinic but on the 12 of March she is going to speak to thier radiologist at UCSF to see what he thinks about Maxwells MRI/MRA since he has seen 70 of these PHACE kids. I guess looking at all we are doing now it does seem like we are moving in a forward motion with everything. I was just seriously finding it hard to not shut down after his appointment. That's a lie, I did shut down for about 20 minutes. It was then God spoke to me and said, Stephanie, he is not yours. He is MINE. You are puting your faith in all that you can do and all the Dr's can do. I want you to trust Me!!! He continues to shop me where my faith needs to be placed. And to be thankful for every part of this. It is through this where His glory is going to truly be revealed.

So my prayer now is that I would just be thankful for everything. Especially thankful for every malformed vessel in Maxwell's brain that was so delicatly fashioned by the Master for his eternal purpose because He IS good! Last night at church we sang this song. I have replaced a few words but this is what the Lord wants me to remember:

For I know that You are good

God I know that all you do is good

So I put his life in Your Hands

he's Yours alone

he's Yours alone

Surrender, Lord I raise my hands to You alone

to You alone

So if you want to pray for our family please pray for continued thankfulness and peace. It seems easy at the moment when everything is a little calm but if something does happen I would like to keep the same attitude of thankfulness. So I guess that's all for now. I will post again when there is more info.