Update

Again, thank you so much for your prayers and concern for Marcus and our family.  Because you’ve been praying, we’ve known the reality of God’s grace and have felt His strength to persevere.  He is answering your prayers and through them, you have ministered to us so much.

Since you are praying, I just wanted to post an update on our doctors’ appointments.  Since my last post, we’ve seen the neuro-opthamologist, the pediatrician, and the neurologist.  We were encouraged to learn that the abnormality in his cerebellum is subtle and on the milder side of the spectrum.  Clinically speaking, the doctors think Marcus looks atypical of the syndrome because he doesn’t bear a lot of the symptoms that Joubert kids have. None of the doctors can say that Joubert Syndrome is ruled out, but if Marcus does have it, he may have a milder form of it.  We will be seeing a geneticist to learn more, and his MRI will be read by two pediatric neuro-radiologists to get their opinion as well.  So far, we’ve been incredibly encouraged by this news.

Right now, along with his hypotonia (lack of core muscle strength) our main concern is Marcus’ vision.  We learned that his brain abnormality is what is causing his nystagmus (eye movements) and head-shaking, but not his poor vision.  The neuro-opthamologist thinks it may be his retina, in which case there is no treatment.  However, he has seen some infants develop their vision as late as 6 months.  So, he is giving Marcus until mid-December to see if his vision will develop on its own.  If not, he will do an ERG to determine if it is indeed a retina problem and to see how severe it is.  Right now, he sees light and larger objects without details.  If it is his retina that is causing the problem, he will be visually impaired and worse-case scenario, go blind.

The future is a big unknown.  We don’t know if his vision will improve, if he has Joubert, how much his brain abnormality will affect his physical and cognitive development, if our future children can be at risk of the syndrome, etc.  But it’s such a comfort that God knows all things and that He’ll reveal to us what He thinks we need to know.  We are forced to rely on Him, trust Him, and rest in His sovereignty.  We are helpless, but that is good because we are waiting on the Lord, who is in control and knows all things.  Through this, we’ve come to know God more.  He is such a loving, kind, gracious, compassionate, sovereign God.  We are thankful that He has used this trial to draw us closer to Him, which is an answer to many of our prayers for our family.

Many of you have lovingly asked how we are doing.  All we can say is that God’s word is true and His grace really is sufficient to cover over our weaknesses.  Left to ourselves, Mike and I are SO weak, so frail, so sinful, so untrusting, so anxious, so downcast, so thankless.  But God has overwhelmed us with His grace today and He’s given us a joy that we really haven’t known in “good” or “easy” times.  Knowing that, we’re trusting that God will continue to give us His grace tomorrow, even if it gets harder.

Can I ask for more prayer?  Here are a few specific things you can pray for:

1.  Pray that Marcus’ vision will develop on its own by mid-December and that his poor vision is a developmental issue rather than a retinal issue.

2.  Pray that the physical/occupational therapy & vision stimulation will be effective in helping Marcus with his truncal strength and vision.  Pray that Marcus will be a fighter.

3.  Pray for continued desperation before the Lord, and that we would be pleasing to Him through this time of waiting.

4.  Pray that our eyes would always be open for opportunities to use this trial to bless others.

5.  Lastly, you can lift up thanks to God with us because we already see so many blessings in this.  (Too many blessings to share now.  Will make it a separate post.) We don’t know what the big picture is yet, but we have seen glimpses of God working this out for good in so many ways.

We are so thankful for you.  We LOVE the Body of Christ and He has used you to lighten our load as you carry this burden with us.

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