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.

Sick House

Ben has been much healthier this winter than last and up until last weekend he hasn't been sick once. But he did catch a cold and is currently still trying to get over the hump of it. Round the clock nebulizer treatments of Xopenix and Atrovent seem to be helping some, but I wish there was something more I could do (seems like because he doesn't walk he has trouble breaking up the mucus in his chest). Ben got the Pneumonia Vaccine this year so I'm hoping that helps prevent this from moving into his lungs. I too caught what Ben has and Mike has been the healthy one caring for us sicklings.

Not feeling 100% has been causing Ben not to sleep as well and have a short fuse (can't say as I blame him). But I'm concerned because he is starting to take his anger out on himself by scratching his face all up (and I'm keeping his nails trimmed really short but that doesn't seem to be helping). I don't know if he is doing that because he feels the pressure from the congestion in his head, he has a headache or is just developing a new bad behavior in place of the trach pulling that he has stopped.

I've heard parent's of CHARGE kids say that behavior is the hardest part of CHARGE, even harder than all the medical issues and I can see why. Because so many kids with CHARGE have hearing and vision impairments, communication is very difficult with them. Most understand a lot of sign language but actually using it comes harder for them. Basically they are dealing with the same frustration kids deal with at the "Terrible Two Stage" their entire life. They know what they want, but have trouble getting it out. And because Ben can't walk or get into sitting on his own, he has to rely on us for almost everything he wants. And the older they get, the more wants they have and the more frustrated they get. I'm surprised most kids with CHARGE aren't upset all the time... I probably would be :)

I'm hopeful that Ben will continue to increase the amount of signs he actually does and in turn that will decrease his frustration level. And in the meantime, we are trying to make our house as accessible as possible for him. We adapted a light switch so he can turn it on himself (he enjoys this) and we ordered a floor level toy storage shelf to make more of his stuff accessible so he doesn't have to rely on us to pick out his toys (which he doesn't like).

Ben's Body Is His Canvas

Ben has added coloring with "washable" markers to his daily repertoire. We know when he wants to color because once he is in his high chair, he pushes his sleeves up to his elbows (this is what they do at school before starting a craft). At first, all he wanted to do was color on two somewhat blank pages of his coloring book.

Once that page was filled, he then moved on to the tray of his high chair. Since it wiped clean pretty easily, we allowed him to have his fun. That excitement wore off quickly and he decided to start coloring himself next. Now we can't get him to stop. He colors lines up his arms, in his palm and on each one of his fingers. Once we wipe him clean, he starts the coloring all over again. And when he is done, he admires his work. As much as I don't want him coloring himself,I can't help but laugh watching him.

Good News

Ben had his cochlear implant checked and no new electrodes need turned off. GREAT NEWS! His audiologist spent an hour checking every electrode via the computer and then manually while we watched how Ben responded. Based on those responses, we made some minor tweaks - mostly having to do with bringing down the high frequency threshold. And since the appointment, Ben has been wearing his implant while turned on during all waking hours. The timing is perfect too because Ben's last day of school is tomorrow and they have a choir assembly put on by the high school students to attend. Now he will be able to hear it and enjoy it!