Please Don't Be Closed - UPDATE

Ben had his follow-up ENT appointment today and his doc ran a flexible scope down both nasal passages (doing this while Ben was awake wasn't an easy task nor was it comfortable for Ben)... and it is completely open!!! I was so thrilled when I saw the red light in his mouth coming from the scope in his nose I actually said "I SEE A LIGHT, I SEE A LIGHT". His doctor said at this point, he doesn't want me dilating any longer. What a relief for both Ben and I. What great news!

Grrr... why do all good things get discontinued?

Isn't it just the worst when you find something you really LOVE and it gets discontinued? I just found out that our beloved portable suction machine is no longer being made and you can't buy parts for it any longer either! How frustrating! This perfect machine is less than 3 lbs and super quiet - which draws less attention (and comments) to us in public when we need to use it and also makes us less distracting in the classroom. I was so in love with it when I saw it that we even saved up Ben's Christmas and birthday money to buy it outright since insurance wouldn't. I can't express how upset I am over this!

Anyone else have experience with portable suction machines? If so, what do you recommend? Quiet is my first priority and weight is my second. Quality and suction power tie for 3rd.

Please Don't Be Closed

Ben's coanal atresia (nasal passage blockage) has been an ongoing issue since his birth. He's had over five surgeries to keep his nasal passage open and the last surgery has been his only successful one. After that surgery (which was last year I believe), I've been doing home dilations to keep it open (per the doctor). Ben hates it and I hate doing it, but it is better than the surgery. I started out dilating daily, then moved to every two days, then once a week and just a few months ago I went to every two weeks. His doc actually thought I was safe to stop completely but I was just too worried about it closing to do that so I was hoping to get to just dilating once a month.

Anyway, I've been doing it every two weeks with no problems until this past Sunday. I couldn't get through - even after three tries. I was wondering if it could have closed and scarred over from his bad cold (mucus causes irritation which can cause scarring). But to do so in two weeks seemed too fast, even for him. His ENT started him on some really strong steroid drops put into his nostrils. Our hope is that it is just swelling from being sick. I'm praying the drops will do the trick. Thinking of the possibility of him having to get that surgery a 6th time makes me sick to my stomach.

We will follow-up with an ENT office visit in the next week and the odds are his doc will then run a scope down his nasal passage to see if it is open. Please pray for him and some open sinuses!

Signing Progress - WOW!

Ben's signing has REALLY taken off recently. It has clicked that what he signs he gets... and in turn is learning very quickly what the sign is for the things he wants. And then uses it at a later time to request it! We are so thrilled and proud of him. He is now consistently signing 19 signs without prompting. Those signs are (and from this list you can tell what motivates him):
1. TV
2. Up
3. More
4. Shoes
5. Open
6. Close
7. Sit
8. Tickle
9. Bath
10. Apples
11. Glue
12. Scissors
13. Finished
14. Color
15. Bubbles
16. Flower
17. Roll
18. Jump
19. Book

We MISS School!

Between illnesses and school closings (due to the weather), it has been 12 days since Ben has been at school. And he misses it terribly!

Ben has picture cards of just about everything in his life plus a lot of basic vocabulary words. Last night he went through ALL his cards until he found the picture of school. He has been holding it since then and just looking at it like he thinks he will magically get to go if he stares at it long enough. Now that he is feeling better, he doesn't understand the weather is the reason we can't go to school or do much of anything outside the house.