Monday, March 20, 2006

Thus Far, He Has Been Good

There have been several occasions over the last couple months that have caused me to become so overcome with gratefulness to God for my son that I have wept or had to just pause for a few moments to really thank God over and over for how good He has been to us in this journey with Judah.

One of those moments came when Judah was recovering from anesthesia from his EUA back in February. The nurse relayed how functioning Judah was for a little boy with Sturge Weber and how much "worse off" are some of the SWS kids who they treat. It made me stop and consider that while many of the moms around me don't have to go to the hospital regularly and put their kids under anesthesia, there are other moms who I don't know walking through much more trying hardships with their children, who are laying down their lives in much more obvious ways than I am for my sons and family, and who may grieve daily the loss of their own dreams or expectations for what their little one would become.

Another moment came the day we picked up Judah's glasses. While the temptation existed to complain or worry about the cost of these glasses or the battles ahead to have Judah keep the glasses on his face, the Lord graciously allowed me to see and instead think upon the fact that we could afford these glasses for Judah at all. Yes, it may come at the cost of a weekend away or new clothes, but it doesn't come at the cost of feeding my family or owning a home. I was overcome with gratefulness for the financial means to provide such care to my son. Many around the world simply go blind not just because they can't afford glasses, but they can't even afford to see a doctor in the first place!

Finally, I was undone once again last night after putting the boys to bed with how well Judah is doing in comparison to the prognosis given to us in those first days and weeks of his life. We were told he could have seizures, stokes and be impaired mentally. We watched videos that showed us the dramatic effects a Port Wine Stain can have on a person's appearance and bodily functions. And, while these outcomes still remain a possibility for Judah, I am giving thanks today that God has spared us of many of the more difficult effects of SWS. I am also giving thanks for tomorrow because while I do not know what tomorrow will bring our way (it could be the late onset of seizures or strokes; it could be the rapid growth of Judah's PWS in one of his limbs, etc), I know there will be grace to respond in a way that glorifies God and sustains us.

Thank you for your ongoing prayers. I hope you are assured that they are one of the more significant means of grace to us, specifically in caring for Judah. We are so grateful for you and for your prayers!!

Monday, March 13, 2006

Glasses Purchased. Onto our Teeth.

After three mornings of taking the boys out to try on glasses (boy, was that test in patience and perseverance), we decided on a pair of glasses for Judah. It was quite a different experience finding glasses for Judah than it is finding glasses for Lawrence or myself.

We try on many pairs of glasses, and the ultimate deciding factor is appearance. Do I look good? :) For Judah, if we could get the glasses to stay on his face for even 2 seconds just to see if they fit, we were doing well. Appearance wasn't really a factor at all.

Do the glasses fit his head and eye size? Do the glasses have flexible rims and arms so as to make them as nearly indestructible as possible? And, finally, are these the most inexpensive pair we've looked at that match the other criteria as well? I can't even tell you what the glasses look like on Judah, but hopefully I will soon!

The glasses are ordered, and when they come in and Judah gets some practice wearing them, I'll see if I can post a photo for you to see my little cutie in his new specs.

This week, Judah and Tucker are going to the dentist. Judah hasn't yet had oral issues, but it's something we want to stay on top of as the PWS is present in his mouth, gums and tongue. He's got a full set of teeth and a beautiful smile that is unmatched by anyone in my opinion.

Please pray that:
  • the boys cooperate for the dentist visit, letting the hygenist clean their teeth and brush flouride on them.
  • the boys' teeth and gums look healthy, and mom leaves assured she's praciticing good oral hygeine with her boys.
  • our dentist, who is familiar with Sturge Weber Syndrome and works with kids with special dental needs, will anticipate and help us stave off any potential dental/oral problems Judah might have related to his SWS.


Monday, March 06, 2006

The Hunt is On!

Today I braved the first hunting trip alone with both boys in tow. The hunting trip is for Judah's glasses. I figured it wouldn't be easy; I didn't think I'd have both boys crying by the time it was all said and done. I thought it wasn't the most ideal situation to take them by myself, but knew there would be grace to remain patient and grateful.

We think we found one pair of glasses that might work for Judah, but I only went to one Optical Center. There is one more Optical Center I want to try that takes our insurance. Depending on prices there, I may try other places where our insurance is not accepted to see if by chance we can find anything less expensive even without our insurance discounts.

It may sound trivial, but we would appreciate your prayers for a pair of glasses for Judah. Fit is important. Durability is equally if not more important! Cost is a factor, too. These are the "little" things where God has consistently proven Himself faithful and gracious. While I can look at this hunt for glasses as an inconvenience, I would rather view it as an opportunity for God to enter our world, even in what may be a trivial thing: finding a pair of glasses.

Friday, March 03, 2006

Glasses? Yes

Thanks to all of you who prayed for Judah's eye appointment. My most gnawing anxiety prior to the appointment was not as much that he might need glasses as it was he wouldn't cooperate for the exam.

We arrived early to our appointment, which rarely if ever happens, and Judah was a champ, having to wait a half hour in the waiting room to be seen. He sat up in his own chair, read a book and played with his cars. If I was an onlooker, I might have thought, "wow, what a good mom she must be." But, as the mom I know the truth is, "what a good boy I have". Actually, there are plenty of times when he doesn't behave so well, so really the truth is that God was just kind to both of us this morning.

When we were finally seen, Judah sat rather timidly on my lap as the Dr's assistant, Jana, evaluated how well he tracked with each individual eye. He never really likes this part, but I could tell there was a little more than the usual apprehension in him today. Lawrence and I think he was trying to figure out if this was another laser treatment. He just had a laser treatment two weeks ago, and it was a rather traumatic visit.

Things were going fine until Jana accidentally shocked him with her finger, which I'm guessing is all it took to confirm in Judah's mind that, yes, this was a laser treatment. It was like a dam had opened its gates, as Judah just started to wail. Needless to say, the first half of the exam came to a screeching halt.

Judah calmed down in time for Dr's Abrams to come into examine him. She brought her big case full of lenses, opened it up, and after ritualistically giving Judah his own lens to play with, began to hold the lenses up to his eye, one at a time, to determine a prescription for him. This is the part that Judah needs to hold still.

An odd combination of listening to our wonderful and very child-oriented doctor sing "Old McDonald" and watching "Finding Nemo" on the little TV screen they have in the office kept Judah perfectly still long enough for Dr. Abrams to get a prescription for his eyes. She did determine that Judah would benefit from glasses.

So, the hunt begins for a pair of specs. for my little man. And then, the real challenges: having Judah keep them on his face and keeping Tucker from ripping them off Judah's face. If my hubby agrees, I'll see if I can post a picture of Judah in his glasses once we have them.

Thanks for praying. Judah did sit still, and even though he does need glasses, I'm so grateful for the kindness of God that we live in a time and are among those privileged to afford such things beneficial to our overall health. Judah really is a blessed little man, and his family is equally blessed, too!