Monday, February 23, 2009

Sick Day

(This picture is from a great weather day last week)
Isn't that just the sweetest face!!!!

Well, it seems the proverbial snowball is rolling again! Saturday night William had a slight runny nose, but we really felt he was just having some sinus issues. We took him to church and everything seemed fine. However, he missed his nap and that's when the snowball seemed to start.
As you know, he used to lose control of his neck/head when he was tired and now he does it pretty consistently. Something about being tired seems to get to him. On the way home yesterday he was as white as a sheet and his cheeks were flaming red, yet he had no fever. He has done this before and we've kind of chalked it up to being tired, as that's when it seems to happen. But last night was a little different. He completely zoned out. He was staring into space and it seemed like he just wasn't there. Nothing we did made him snap out of it. It was like he didn't even see us or hear us. We were in the middle of nowhere on the way home (the long stretch where there's no place to stop for like an hour and a half), so we couldn't even go to the ER. I was pretty much freaking out and Mike said, "Why don't you start praying." He also got the girls praying and almost immediately William pulled out of it, then went to sleep. He slept peacefully until we got home. He was having some trouble breathing when he woke up, so we gave him a breathing treatment. The snowball continues... In the middle of the treatment, the nebulizer made a strange sound and quit working!!! There's some kind of rattling sound in the motor now. He was able to sleep semi-well last night, but had breathing issues off and on. This morning he was having such a hard time breathing, he almost sounded like he was going under water, then coming up for air, down, up, and so on. He's very gurgly sounding. I cancelled therapy and called Dr. Ross first thing this morning to get a new nebulizer. I'm waiting for a call back to go get another one and pray that he will not get too sick before I can get him another breathing treatment.
The snowball is still rolling... Sarah and Sydnee are still in bed, not feeling well with congestion. Sherrod, Elly, and Selah are also congested. That leaves Abby and Wallace on the "well" list. I really hope Wallace doesn't pick up anything.

On a positive note...
We received a few test results in the mail this week. So far everything has come back normal. Of course with every normal test result there is a certain amount of relief (and fear). I just wonder what else is coming. Everytime a new symptom develops it just confirms that there is definitely something wrong and I wonder how much worse it will get. I'm also a little bummed because we found out we have to wait nearly 3 months to get in to see the pediatric neuro ophthalmologist for his eyes. On the one hand, this is good, because the CT scan didn't show anything of concern. On the other hand, it's bad, because his eyes seem to be getting worse. They are not consistently worse, though, so I'm hoping that is good. Some days they hardly shake at all and other days they shake so hard, I wonder that he can see at all! He's also developed a bit of a discharge from his eyes over the last couple of weeks and I wonder what that's all about.

I find myself mellowing on discipline. Things that once seemed important just don't anymore. For example, right now William is methodically removing each and every one of our Vision Forum conference DVDs and CD sets from the bookcase and tossing them in the floor, then putting them back upside down, backwards, and on different shelves. It just doesn't seem like a big deal. For those of you who know what a stickler I am and how I like the bookcases to be, you also know the significance of this change in attitude. It just warms my heart to see him enjoying himself. How strange is that?

So teach us to number our days, that we may apply our hearts unto wisdom. Psalm 90:12

Thursday, February 19, 2009

CT Scan

As many of you already know, William was not sedated for the CT scan. However, Dr. Ross reviewed the report and feels that, for his purposes, it was sufficient. So far, so good, as there was nothing that appeared abnormal. Two of the specialists needed to see the actual films, so we are still waiting for them to receive their CDs in the mail. If it is not clear enough for them to see what they need, we will have to decide if we will run another or just go straight to an MRI, which will include another surgery. The benefit would be the MRI itself and the ability to draw bone marrow and a biopsy, all in one trip. We're still waiting for the tests to come back from the MAYO clinic.
Dr. Ross
Abby and William in the waiting room

For Thou art my rock and my fortress; therefore for Thy name's sake, lead me, and guide me. Psalm 31:3

Tuesday, February 17, 2009

Perfect Peace

"Thou wilt keep him in perfect peace, whose mind is stayed on Thee: because he trusteth in Thee." Isaiah 26:3

"The peace of God is not found in outward circumstances. It is a gift from God to the person who loves God and desires to please Him with all her heart." - taken from A Woman from God's Perspective by Anna Mary Byler

Monday, February 16, 2009


Last night was very exciting! Though it may not seem like a big deal, for William it's a huge milestone! He was sitting in the floor and just grabbed on to Elly's dress and pulled himself up. He let go and stood there for quite awhile, then he took two steps! We tried to get him to repeat the action (it's never as good when you're trying to get them to do it)! However, we did catch this video of a couple of steps!

And they sang together by course in praising and giving thanks unto the LORD; because He is good, for His mercy endureth forever...Ezra 3:11

Saturday, February 14, 2009


For those of you who are wondering what nystagmus looks like, Sarah was able to catch it on video. It is much more prominent in person, but you are able to get an idea from the video.

Also, a praise report: William seems to be doing much better since we started him on the L-Carnitine at Dr. Domek's suggestion. His eyes do not shake as often or as violently and he doesn't seem to be as tired or as weak! Yeah!!!

Cast thy burden upon the LORD, and he shall sustain thee: He shall never suffer the righteous to be moved. Psalm 55:22

Tuesday, February 10, 2009

Today's Appointment

Well, we didn't learn much from today's appointment with the hematologist/oncologist. He does have a few things in mind, but wants to look at the results from the blood draw last week to see if that changes his direction for future blood work. He is also wanting to draw some bone marrow while William is already sedated for the CT scan next week.

Our battery died on the camera so we were unable to get a picture with Dr. Kirkpatrick, much to his disappointment, I know (ha,ha). He assured us that we would be seeing him again (nice man, but not really what we wanted to hear).

The weather was so nice when we got home that everyone enjoyed playing outside for awhile. Now I hear tornadoes might be moving in! Go figure!

William got the "safety patrol" sticker at the oncologist's office. He was so proud of it and did not want me to take it off for his nap. I had to, but I saved it for him so he can have it back when he wakes up!

"For ye shall go out with joy, and be led forth with peace..." Isaiah 55:12a

Monday, February 9, 2009

Speech Therapy

Here is a video of William at therapy today (with his speech therapist, Krissa, and sister, Sarah). I love the "ahhh" he does for the airplane - he does it all the time at home.

He's still pretty quiet, but he's getting so much better at vocalization. He'll make noises to ask for things, he laughs out loud, he's even starting to sing along with the girls. He just started doing movements to "The Itsy Bitsy Spider" with us. It's so exciting!

"...that they may hear, and that they may learn, and fear the LORD your God, and observe to do all the words of this law:" Deuteronomy 31:12b

Thursday, February 5, 2009

A Day of Doctors

Well, yesterday was quite the long day, but William was such a trooper! We left the house at 6:30am and arrived at our first appointment at 9:00am. First up was Dr. Scott where we found out that William's optic nerves are pale and he is now near-sighted. This is a change from August when everything looked good. He is referring us to a pediatric neuro ophthalmologist after the CT scan is done.
After that we saw Dr. Kasulis for a mapping session. William was very tired and didn't really like the booth testing, but responded better for mapping.
Next up was Dr. Domek for both William and Sherrod. Sherrod is doing great with her pump - she can even change it by herself now! Sharon (the diabetes educator and wife to Dr. Domek) said that Sherrod is the youngest patient she's had who can do it without help! On to William: Dr. Domek lined out for us all of his issues, looking for a common thread. It all points to the Central Nervous System and he thinks we're probably looking at some sort of mitochondrial disease and the other doctors are in agreement.
After lunch at the hospital, we were on to see Dr. Wood. This appointment was right in the middle of William's nap so I felt really bad that he had to wake up with someone poking on him, but I'm so glad that his ears are looking good! We also discussed some options that are available, should an MRI be required (for those of you who aren't aware: William can't have an MRI since he has magnets in his head). Hopefully, the CT scan will be sufficient.
Next we were off to his last appointment of the day with Dr. Norman. She was finally able to see the "head dropping" thing, not because he did it in the office, but because we videoed it earlier when he was doing it at his mapping session. I was so glad we got it on tape! She wanted to draw several labs so she also consulted with Dr. Domek and Dr. Ross and the three of them had input into the labs so that he would only have to be stuck once. That was so nice! I'm glad we could do it in one trip for him and not three different times.
We are so blessed by our doctors. God's hand has surely guided us to each one. Mike and I truly appreciate the way they are all working together for William's benefit. They've also all been great about scheduling our appointments together and around each other. We caught some of them on camera yesterday, so I thought I'd share some pictures. We missed Dr. Domek, but we'll catch him next time!
Thank you so much for your prayers for our precious baby. We appreciate your love and care for our family!

Dr. Scott
Dr. Kasulis

Tired out from a long day and it's not over yet
Dr. Wood

Dr. Norman
another blood draw
Yeah! The day is finally over - let's go home!

"But thanks be to God, which put the same earnest care into the heart of Titus for you." 2 Corinthians 8:16