Back in the Saddle

We are getting back into the swing of things. Today was filled with therapy, doctors, and GOOD NEWS! I love good news!

I discussed my concerns with Liesa at PT today. The prognosis looks good. She worked on some muscle groups, performing some tests on him, and feels his weakness is not pathological. Basically that means that he should regain everything he's lost as he continues to heal from his illness. This was a big concern, since it seems he loses something major after a big illness (7mos pneumonia/RSV - hearing loss, 15 mos pneumonia - motor skill loss, 21 mos pneumonia - nystagmus and loss of eye sight...). The concern here is that whatever neurological condition he has might be degenerative and result in continued losses over time. Of course, we are praying this is not the case, but we won't really know until he makes it through some milestones. He has had several boughts of pneumonia with no apparent loss, but we just have to wait and see. It always makes me nervous. Anyway, PT was our first good news.


Booth testing went great today! William's threshholds are great, his hearing is perfect*, and his understanding is impressive. Even his speech is coming along!


The last visit was to William's CI surgeon. It also went very well. William's recent ear infection and drainage has completely cleared up and left no residual damage. Implants are exactly as they should be and our recheck appointments have now moved to YEARLY! Wooo-hooo!

All in all, a good day! Praise the Lord!

*just to clarify: when I say William has perfect hearing, this is only with his processors on. The cochlear implants did not heal his deafness, only make a way for him to receive sound since his cochlea does not work on its own. He is, and will always be, profoundly deaf, but is able to hear when he wears his processors. When he has them off, he gets absolutely no sound at all.

"Behold, I will do a new thing; now it shall spring forth; shall ye not know it? I will even make a way in the wilderness, and rivers in the desert." Isaiah 43:19

A Light Heart

Okay, this post doesn't really have anything to do with William, except that I really needed some laughter after the long indoor stay. My sweet father-in-law sent me this link and it made me laugh soooooo hard, I wanted to share it. If you need a good laugh, take a look at this, but whatever you do, don't bungee jump naked!

http://www.youtube.com/watch?v=L1_W0LCHwK4

"A cheerful heart is good medicine, but a crushed spirit dries up the bones." Proverbs 17:22

A Word of Thanks

"But my God shall supply all your need according to His riches in glory by Christ Jesus." Philippians 4:19


Michael and I wish to express our gratitude to those of you who have been so very helpful to us over the last 6 weeks. You have blessed us beyond words! It has been so humbling to have all the visitors (even with risk of infection), meals, calls, prayers, gifts, and help for our family. We have also received anonymous financial gifts that were extremely timely for us - those of you with children with special needs totally understand what I'm talking about! Whenever William has had a need arise, we've never had to put it off for wondering how to pay for it. God has always provided! And we trust that, whatever may come, He will continue to do so.

William is finally clear of all stidor sounds and wheezing! Praise be to God! He is up and around and playing again, which is comforting. However, we've noticed that he is still extremely weak and only plays for short spurts of time. He seems to have lost all skill gained over the last few months of PT and his limbs seem like jello again. Standing and walking are trying tasks that he doesn't even attempt. Even walking in his walker is complicated for him and he falls often. Crawling is his main mode of transportation, but even that has become difficult for him to manage, as his arms give way on him often and he hits his face on the floor. I am looking forward to PT tomorrow to see what his therapist thinks. Hopefully, it is just weakness from trying to recover from his 6-week bought of pneumonia and he will regain his strength quickly. We appreciate your continued prayers on his behalf.

As for me, I think I'm starting to get a little stir crazy. I'm ready for nice weather to be able to take the children out again. I'm hopeful that the Vest is going to help William with illness, but I'm not ready to test him out in the damp weather yet.


"Be not ye therefore like unto them: for your Father knoweth what things ye have need of, before ye ask Him." Matthew 6:8

"Let us therefore come boldly unto the throne of grace, that we may obtain mercy, and find grace to help in time of need." Hebrews 4:16

The Vest

The Vest is wonderful technology! We are so excited to have it for William! In two full days of use his lungs have cleared amazingly! Everytime I've listened to his lungs I have been astonished at the difference! We are very encouraged by William's new equipment and hopeful that it could mean no more hospital trips!

William sits nicely for his treatments. When he is well he will have two 20 minute treatments daily, but when he is having trouble clearing his lungs (like now) he'll have treatments each time he nebulizes (right now it's every 4 hours, daytime). He likes to read or sing - I think he really likes to hear his own voice vibrate! Sometimes he'll sit and say, "AHHHHHHHHH.....," but when someone gets the camera out, he stops.

We did catch these two videos. In this one, Abby is nebulizing him while Sarah sings with him:

In this one, Selah is helping with the nebulizer while I read to him:

I love how he "roars" for the lion! He is really listening and processing things well and his speech is even coming along!

For the LORD gives wisdom: out of His mouth comes knowledge and understanding." Proverbs 2:6

Daddy's Tough Guy

That's what his shirt says, and that's what he is! He's such a trooper!

AND HE'S HOME!!!

He's still got a long road ahead, but we are hopeful that we can manage his care here. Look for future posts with pictures of his new respiratory equipment!

"Sing unto the LORD, O ye saints of his, and give thanks at the remembrance of his holiness." Psalm 30:4