Saturday, April 11, 2009

Just a sweet picture of Ryan....

The Pinewood Derby Craze Begins

Dwight and the boys started converting their blocks of wood into Pinewood Derby cars. They've been busy in the garage most of the day. They seem to be having a great time. Dwight got a new toy. I think it's called a drill press. He said he needed it for the corner chairs service project we've been doing, but I'm beginning to suspect he really wanted it for the Pinewood Derby cars. :) I'm just thankful that he's willing to do this with the boys.

Which way do you face?

Ryan's Neurologist holds him gently and spins him slowly around. No matter where they stop, Ryan always turns his face to the light. Some refer to it as being a "light gazer." The significance is that we know that Ryan at the very least sees light.

As I've thought about this, I've wondered. What about me? Am I a light gazer?

Think about the word light. There's the Webster's definition: something that makes vision possible; daylight or dawn; spiritual illumination; something to presented to view; something that enlightens or informs; a set of principles, standards or opinions.

Then think about what we learn about the word light from the scriptures:

Ye are the light of the world. ... Let your light so shine before men that they may see your good works and glorify your Father in Heaven. (Matthew 5:14-16)

... the light of the glorious gospel of Christ .... (2 Corinthians 4:4)

... walk in the light .... (1 John 1:7)

Thy word is a lamp unto my feet, and a light unto my path. (Psalms 119:105)

... when I sit in darkness, the Lord shall be a light unto me. ... he will bring me forth to the light, and I shall behold his righteousness. (Micah 7: 8-9)

And, of course, there's Isaiah's great discourse on fasting: Then shall thy light break forth as the morning, and thine health shall spring forth speedily: and thy righteousness shall go before thee; the glory of the Lord shall be thy rereward. And if thou draw out thy soul to the hungry, and satisfy the afflicted soul; then shall thy light rise in obscurity, and thy darkness be as the noonday. (Isaiah 58: 8, 10)

And, probably my favorite on this subject... Then spake Jesus again unto them, saying, I am the light of the world: he that followeth me shall not walk in darkness, but shall have the light of life. (John 8: 12)

So, what about you? Are you a light gazer?

New Vision Therapy Toy

Ryan has a new version of Vision Therapy. Rebecca, an amazing Vision Intervention (VI) Therapist, recommends Baby Einstein's dvds for 0-3 month olds. They are called digital board books. They have simple images on a solid background.

To make it effective, I put Ryan in his swing right in front of the tv in a dark room. Then I drape a black cloth around the back of the swing to cut down on as much light as possible. This also helps to remove any distractions from his visual field. I then play the dvd with the music completely turned off. (When a child has a vision impairment, sounds can be distracting. They do not necessarily have better hearing, but they may attend more to the sounds since the vision requires more work.)

So, we've been watching this dvd almost every day and Ryan loves it! He has definite favorite images, and a couple of images that he doesn't like at all. We are so thankful for amazing therapists who have suggestions like this. I would have never put any of my other babies this close to the tv, but when it's prescribed by a therapist, what's a Mom to do but enjoy the opportunity to get a few things done. :)

Friday, April 10, 2009

An Update on Ryan

This week brought both good and not-so-good news. Let's start with the not-so-good so that we can end on a happy note.

Ryan had his first appointment with the Pediatric ENT Specialist (Ear, Nose & Throat). They visually examined Ryan. During the appointment, the dr was attempting to use a tongue depressor to take a look in Ryan's mouth. However, Ryan wasn't opening his mouth. The dr said, "Come on little guy I need you to cry so I can see in your mouth." But you all know Ryan doesn't cry much. Instead Ryan opened his mouth and said, "Ahhh..." It was really sweet! I don't think I could have trained a baby to respond more on cue than that. However, Ryan wasn't as cooperative or patient when they put the little scope up his nose. He didn't like the numbing drops and really didn't like us holding his hands and head in place. It's the pits to watch things like that. Anyway ... so the diagnosis... mild septal deviation, mild adenoid hypertrophy, and submucous cleft palate. The bony structure looks fine.

The nasal septum is the part of the nose that separates the 2 airways and the nostrils. The septal deviation esentially means that his left side is smaller than his right. We're not sure how much so. He has been placed on steroids to help alleviate some of the swelling in hopes of getting a better view of things next time. We don't think this will cause problems. We think it just contributes to snoring, snorting and other noises he makes, especially at night.

The mild adenoid hypertrophy means that the adenoids are slightly enlarged, even more than he'd anticipate for an infant.
At this point, we cannot do an adenoidectomy due to the submucous cleft palate. It would make it even harder for Ryan to close off the back of his throat. Therefore, for now, we will continue to watch, and sometime in the future we may consider doing a partial adenoidectomy.

The submucous cleft palate is not quite what I think of when I hear cleft palate. There is no hole for Ryan. Ryan's cleft only involves the soft tissue in the back of his mouth (the soft palate) and does not extend to the front of his mouth in the hard palate area). Ryan's is considered an "isolated cleft" because it only affects the palate and not the lip. The muscles of the palate did not fully close. This makes it tough to close off the back of his throat. This explains why when Ryan vomits, he comes mostly out his nose. Once in a while this can affect future speech; however, the dr has not seen this frequently when the cleft palate has been like Ryan's. More often though the child with this condition has frequent ear infections.

Since Ryan doesn't seem to communicate pain clearly, the dr has asked that Ryan's ears be checked at least once a month. Since we see a medical specialst or his pediatrician at least ever 2 weeks, we figure this shouldn't be hard to accomplish. We'll do this until we figure out how Ryan communicates pain. Hopefully, we won't have any more ruptured ear drums.

So ... the good news! It's always much more fun to share the good news! On Wednesday, I took Ryan to see his Ophthalmologist. Let me first tell you a little about this dr. He reminds me of someone from New York. Perhaps a Jewish man from New York, well-educated, and accustomed to afluence. In the times we have been in his office, I have heard a couple of patients be very vocal about how much they did not like him. He's very straight forward, quick, and ... well, not very warm. However, my goal is to always express appreciation ... no matter what the news ... and to be more than just a good patient. I want to make their day better than it was before they saw me. Don't we all prefer to deal with cheerful and grateful people?

On our 1st visit, the dr lacked any warmth when delivering the suspected diagnosis of possible blindness. On our 2nd visit, the dr was running really late ... like more than an hour. The patient before us was obviously extremely bugged. When we went in for our turn, he apologized. I thanked him and said I had actually enjoyed the extra time to read and relax. He looked at me in surprise and then thanked me for being so understanding. He had been delayed by a surgery that had some unexpected events. I could feel his sense of relief when I wasn't yet another angry patient.

So this last visit, he very efficiently went about his exam, and then looked at me and said, "Well, Mrs Mann, I think Ryan is starting to see." Perhaps you can imagine the absolute joy that surged through my body. I think for a moment he even shared my joy. He told me that whatever we are doing in therapy seems to be working and to keep up the good work.

Once again, this week has been busy with therapists and specialists. And, once again, I feel great appreciation for those who have helped us. I know that all of them have made sacrificies to learn all that they know. I know they all do their very best to help others. I am so thankful for each of them.

I'm also really thankful for the progress we see daily in Ryan. Today when I was doing vision therapy with him, he was lifting his head up to look up. I'm so proud of Ryan and how hard he works. I just love this little guy!