Proud Mama

What makes me the proudest and happiest mommy in the world?

1. We met Landon's physical therapist today. She said that he is doing so well and that he really is not behind in walking. She said that she wouldn't be surprised if he is walking by the next time she comes to our house which is next week! Of course, we are betting on it but it's nice to know that he really is close!

2. We also met Landon's occupational therapist. We are going to work on feeding issues with her. She also said, "I don't think you are going to need me for very long!" She observed him eating (goldfish, cheerios and a slice of cheese). Over the past couple of weeks, he has been open and exciting about eating! He tries whatever we put on his plate. The problem is that he often holds food in the side of his mouth, and of course, that he isn't yet consuming enough calories to wean off of the feeds. She said that she thinks that it's a matter of learning to use and manipulate his tongue. If food gets to the side of his mouth, she thinks that he doesn't know how to move it with his tongue so he just leaves it there. Once we help him with this but stimulating his tongue with different exercises, he should eat much more efficiently. She said that the fact that he is interested and attempting is a huge step and that we shouldn't have much more work to do from there.

3. Landon sat in a high chair at a restaurant and actually ate food (mac n cheese and french fries) and at an ice cream cone for dessert!! And he really seems like he is enjoying food and eating.

4. Landon has not thrown up in about two weeks now! He is pooping, thanks to the help of an over-the-counter powder and I think him not going to the bathroom was a big reason why he was vomiting.
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For those who have known Landon's story since he was 7 months- not eating, not going to the bathroom, vomiting- you can understand how happy this all makes us! It has been a long time since this was all normal. It has been a struggle for much of Landon's life so this is a BIG deal!

Tomorrow, Jimmy and I are taking Landon to see the opthamologist. I was feeling pretty anxious about this appointment. They are checking to see if cystine crystals have developed in his eyes yet. If they have developed, we may have to start putting eye drops in his eyes. They may wait until we notice that he is experiencing discomfort (light sensitivity, rubbing his eyes etc). Either way, his eyes will be affected at some point so it almost feels like a waiting game. Eye drops may not seem like a big deal, but at some point, he will need eye drops 8-12 times a day. I don't know if it will start off that often but it will come to that. It's just a matter of time. Landon's nephrologist recently told us about a guy with Cystinosis who was entering into law school (so probably in his twenties). He was consistent about putting eye drops in his eyes every waking hour (he set an alarm on his cell phone), and experienced no pain or light sensitivity. Then she told us about a teenage boy who walks in clinic every few months with dark glasses and a hat because his eyes hurt and are so sensitive to light. He has chosen not to use the eye drops. So needless to say, these eye drops will be VERY important. There is research being conducted so hopefully (fingers crossed) it will become easier and less time time consuming, but until then, that's what we have to look forward to.

Anyway, I was experiencing some anxiety about this appointment and fear that we are at a point where there is something else to worry about. But, I am at peace with whatever the outcome may be. If we have to begin drops, then that's what we do! So, wish us luck tomorrow and I promise to update!