Tuesday, November 28, 2006

The Low Down This Week

Briefly, we're rather booked with dr's appointments this week.

Tuesday: The boys get flu shots. Pray for no adverse reactions and protection from the flu this season.

Wednesday: I have an OB appointment for a check up and a discussion about the possibility of a VBAC. Pray for health for me and the baby and that God would give us wisdom as to whether to elect a C-section or try for a VBAC.

Friday: Judah has a laser treatment. Pray Tucker sleeps well at his sitter's, and that the laser treatment is quick and effective.

And, a very busy weekend! But, whose weekends aren't busy in December?
I will try to update you on these appointments next week.

Lilypie Expecting a baby Ticker

Monday, November 20, 2006

This Day

This morning I opened up a book entitled Valley of Vision, A collection of Puritan Prayers and Devotions. I've read from this book many times before, but today my attention was drawn to a piece of yellow stenopad paper I had placed in there as a bookmark, a very memorable piece of paper. Looking at the paper took me immediately back to August 5, 2004, two days after the boys were born. This paper was written on and given to Lawrence and me by the boys' pediatrician. On it is written these words:

Sturge Weber Syndrome
facial hemangioma
intracranial (brain)
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.


Monday, November 13, 2006

Sorry for the delay

I just re-read my post from two Monday's ago and realized I said that I would update the blog by last Monday and failed to carry through. Sorry! Things sometimes get a bit over my head here or I just forget. I live in that pregnancy fog these days. My husband has now learned that he cannot count on me to remember anything, which at times works to his advantage. :)

As for Judah's eye appointment, thank you for praying. Apart from him crying when his doctor, outfitted as Daphne from "Scoobie Doo", donned with a flaming orange wig and bright pink knee-high boots, came to get him, he did rather well.

Judah really blew me away with the maturity he demonstrated on this visit. He did things that he's never done before. He amazed both Dr. Abrams and myself by taking his first vision test using the letters up on the screen. He correctly identified every letter flashed infront of him (the ones he could see, of course). Our doctor said she's never had a 2 year old boy identify alphabet letters like that before. My son's a genius, and yes, I am a boasting momma! :) He also sat his little chin up in that machine (I have no idea what it's called, but if you've ever had an eye exam, you know what I'm talking about) for the doctor to take a look into his eyes. He even allowed Dr. Abrams, upon my request, to spray numbing drops in his eyes to see if we could get his pressures read. This is the part of the exam we haven't done since he was an infant but instead have him put under anesthesia for because it is typically so traumatic, and young children tend to not cooperate real well.

We didn't get any valid pressures read, but Judah was brave, allowing Dr. Abrams to try. She didn't push real hard to get the pressures because Judah is still really young to cooperate for this procedure. She was hopeful, however, that if we keep exposing him to little "trials" each time we visit her, he may be ready sooner than most to undergo that part of the exam without anesthesia. That would be GREAT! It would mean less trips to Hopkins, less trips to the OR for anesthesia, etc. So, I was thrilled with his progress.

While Judah's optic nerves looked like they were in good condition, Dr. Abrams did find a change in his vision, significant enough to order a new set of lenses. So, after only 7 months in his first set of glasses, we had to order new lenses. Fortunately, we were able to keep the frames and just switch out the lenses as buying new frames would have meant more cost, cost that we were not expecting in the first place. God revealed Himself even in that, though, as the initial price quoted to me ended up being wrong. I was called the day after we ordered his lenses and told that they had overcharged me $40. So, while initially I was tempted to become anxious about this unexpected expense, God allowed circumstances to happen in such a way that I actually found reason to give thanks, thinking He had "saved" us $40.

Ongoing, we are still praying about and watching Judah's growth. Please continue to pray that Judah will grow adequately in the next three months and have no need for the growth hormone deficiency tests. I also need to contact an oral surgeon promptly about seeing Judah for an initial consultation. We have decided to go with the surgeon at Hopkins and trust that God will supply grace and provision for the extra distance and inconvenience of having to travel down to the city as opposed to right up the road to a more local oral surgeon.

Please pray that God will give wisdom to us regarding when to schedule this appointment. Just to give you a glimpse into our world, I already have dr's appointments on our calendar for Jan., March and April of 2007. The only reason I didn't schedule any for February is because I'm scheduled to have our third baby that month! :) So, I figured I would try not to overbook! As you can imagine, with the holidays already upon us, trying to fit in any more doctor's appointments to what we already have scheduled for this month or next is somewhat of a scheduling nightmare. Yet, I want to make sure I'm giving priority to what needs to be made so. You can pray that God will make that clear to us as it regards specifically this initial consultation with an oral surgeon.

You have no reason or motivation to continue to carry us on your hearts and in your prayers a part from the love of Christ. Your prayers, your encouragement and for some of you who God enables, your practical help are all tangible ways you help us bear our burdens, and we are so grateful to God for you!