Judah's appointment was fine yesterday for the most part. He was unusually upset by being at the doctor's office. He grew upset as soon as we walked in the building and initially resisted letting the nurses triage him. Eventually, (like after he realized he would get a sticker if he was good), he warmed up to everyone, and we were fine.
Dr. Comi and I mostly talked in between checking Judah's reflexes, talking about his development and looking over his measurements. Not seeing her for more than 6 months, there were a few things to discuss: Judah's growth, the hypertrophy (swelling) on his face/arm, potential circulation issues, etc.
I am able to give thanks that Judah's situation is not really acute or emergent (as they say in hospital world), meaning there's nothing that needs to be done immediately. He's not really "sick" in the way we typically think of "sick". Yet, there are things going on in his body that will have an impact on his way of life, some things we can only guess might happen and other things we may not see coming at all.
It can be difficult at times to know how to proceed in Judah's care as most of the treatment for SWS is based on symptoms, a reactive approach rather than preventative. I spoke with Dr. Comi about this just to make sure that I was thinking correctly about Judah's syndrome. There is indeed, very little that can be done preventatively for SWS; it's mostly treated per symptoms. There are so many aspects of SWS that are simply not understood by the medical community to date. So much more research needs to happen.
What that means for Judah and for our family is this.
Judah COULD have growth hormone or thyroid issues. We are going to start bloodwork to find this out.
Judah COULD have trouble in the future with the hypertrophy, but we're hopeful that laser treatments will help with this or that he just won't have the kind of trouble that some folks afflicted with SWS have.
Judah COULD have a like syndrome known as Klippel Trenaunay Syndrome which would affect his arms/legs, but we need to do further imaging to find out.
I walked out of the dr.'s office yesterday again crying out to God for wisdom. I don't know what tests to subject my son to and what tests can wait or not be done at all. I don't know what experimental supplementations to possibly try and what ones won't be necessary or might actually harm him. I don't know what information to seek out and what is better left unknown. Sometimes, I don't know how aggressively I should invest time, money, energy, etc. into gaining all the knowledge out there on SWS, knowing that it's man's wisdom, and that seems to change with time. What was recommended 10 years ago is quite different than what might be recommended today.
I walk away from these appointments and conversations tempted to feel very vulnerable and insecure about taking care of my child. But, I have to continually remind myself that God has promised to teach me and instruct me in the way I should go. He has promised me His Holy Spirit to be my guide. He has promised to grant me wisdom lavishly without finding fault if I simply ask Him and believe that He will be true to His promise.
SO, I have a couple lab slips, other doctors' phone numbers to call in order to set up further imaging for Judah. I have a list of things to bring up with our pediatrician. And, I am where I often don't like to be but where I most intimately come to know Lord: completely dependent upon Him to tell me what to do, to look out for me, for Judah and for our family, to once again show Himself strong and faithful and good to us.
We may not have "emergent" needs for Judah, but we certainly have needs. And, as always we covet your prayers as we seek to do our best in caring for our child and glorifying God with the lot He has assigned to us.