Sturge Weber Syndrome
angiomas --calcification leading to retardation and seizures
That was the explanation and description provided to us just shortly after Judah was born regarding the Port Wine Stain that covered most of his tiny, little body.
I am glad that I saved this piece of paper and even moreso, that I found it today in this book. It serves as a constant reminder to me of how faithful God has been to me and my family. We have experienced some of the above mentioned manifestations of SWS, but we haven't experienced all of them. God has graciously spared us thus far of seizures and any apparent brain involvement which would lead to developmental delays or retardation.
This morning in my devotional time with the Lord, He highlighted these phrases for me concerning trial: for a little while (I Peter 1:6, 5:10) and light and momentary (II Corinthians 4:17). I thought that many of our trials often do not feel light and momentary nor that they are only for a little while, but this is how God's Word describes them. How can that be so? The Bible tells us that they are light and momentary compared to the eternal glory they are achieving for us (II Corinthians 4:17) and compared to the inheritance that is waiting for us in Heaven, an inheritance that will never perish, spoil or fade (I Peter 1:4).
Taking you back to Valley of Vision from which I prayed some of my prayers this morning, there was one particular line in the prayer that I'm holding onto for myself today and passing onto you today.
This day will bring me nearer home...
I pray that it will put a smile on your face, provide peace in the midst of any storm you find yourself in and motivation to glorify God by giving thanks that He does ALL things well.
As for Judah and any updates:
Both of my boys are dealing with asthma currently. Tucker started first and Judah followed quickly behind with symptoms, which is oddly enough a typical pattern for them. We were not able to get Tucker's asthma under control via nebulizer treatments alone, and so he ended up on an oral steroid. While we greatly try to avoid getting to that point in their treatment, we are very grateful that it works and significantly helps to stabalize their breathing. So far, we've been able to manage Judah's asthma with just the nebulizer treatments of an inhaled steroid called Pulmicort and another medication called Albuterol, which makes their poor, little hearts race. As a result, the boys have been quite a handful to manage behaviorly.
Please pray that:
- Judah will begin to show more signs of progress with his breathing and that we'll be able to decrease the amount of Albuterol treatments we have to give him in a day to eventually none at all.
- Tucker will not digress once he's finished with the oral steroid.
- the boys will fare well while away this coming week to my parents in Pennsylvania.
- we will have wisdom on how to best control their asthma so that we're not finding ourselves going from one episode to another this winter.