Wow! Another Great Day!

A month or so ago I made a call to the supervisor of the state DDD (Division of Developmental Disabilities) Medically Intensive Waiver Program. I told her Ainsley's story and she said she would come out the next week to do an assessment. Sure enough she came, we spent 2 1/2 hours going over all of the details of Ainsley's medical history and care. She asked me to copy all of her reports and records, which you may recall I wrote about in my post Busy, Busy. I got a call from her last week saying we GOT ON THE WAIVER. I almost didn't believe it was true but sure enough she showed up today for our appointment to finalize the paperwork and do the follow-up assessment which lasted only 1 1/2 hours this time.

We have verbal approval from the man who runs the program for 10 hours a day of nursing. Now we are waiting for the written approval from DDDS (Division of Disability Determination Services). I really can't believe that it happened so fast. I'd heard that people wait years to get on the waiver so I thought I was starting the process early. We were able to bump to the top of the list and get on the waiver because she has the trach. Now I start the process of finding an agency that will accept State payment (they don't pay as well as insurance) and can staff us. That will provide a challenge so think positive vibes for us on that one.

During the appointment the kids were keeping busy. I'd kept them in the house because they'd been burned from being in the pool the whole day before. The sunscreen apparently washed off. Since I was busy they took the opportunity to wander outside for a few minutes. Sneaky kids. Feeling bad about keeping them in on such a beautiful day I said okay, if they stayed in the shade, but when I looked out a few minutes later they were both stark naked. We had a good laugh about it. I had them get dressed and come back in and I put Ainsley on her tummy on the floor in the living room. I could hear Adrian was playing with her so I popped my head in to check on her and she was sitting up on her bottom. The kids insisted they didn't move her. I'm not sure how she did it since I wasn't in the room but you can bet I'll be watching her closely tomorrow!

Grocery Shopping Yesterday

It's something most people take for granted. You need something, you go to the store to buy it. All that changed for us the minute Ainsley came home. The days of packing up the kids in the car to run whatever errands needed to be done were over. It's been a challenge to get the things we need and we've resorted to buying many things through the internet, including groceries at times. But yesterday the kids were having friends over for a tea party and we had to have cookies. More importantly, we HAD to have diapers. That one, cannot wait! So I did it. I packed them all up in the car and we got all the things we needed and rushed home to meet our guests. I suctioned Ainsley once before we left and once again when we left the store. THAT'S IT!

Now this would not have been possible even a few weeks ago. I hate to jinx myself but it appears that the Flovent that we started giving her on Saturday (was it really less than a week ago?!) is really helping minimize secretions. I'm not sure why or how. Perhaps it was just a lucky day. It's not been long enough to know for sure so I'll post more about that another time. Anyway, safety issues aside, I really hate it when she needs suctioning while I'm driving and I have to quickly find a place to pull over to suction her. In the city that's not always safe or possible. These days I am 99% sure she won't end up vomiting if I can't pull over fast enough, like I had happen so many times in the past when I attempted to drive her anywhere. Now she is able to sit, and with the cast/brace off she will fit, in a cart instead of having to grocery shop in the stroller with store personnel suspecting me of shop lifting. Nowdays I am confident enough that I don't feel I must have the oxygen, the ambubag, the go bag with supplies and spare trachs. With only Ainsley, the suction machine and my mini-Mom purse (smaller than a wallet, hangs off the stroller or stuffs in the diaper bag, unlike my REAL purse) in the cart I was actually almost able to fit everything we need in the cart. Alas, I did have to forgo buying beer. No room. Bummer. It was so liberating that I was woo-hooing in the car. The kids are like "What are you so excited about, Mom?" I answer "We went GROCERY SHOPPING!" They think I'm crazy. I'm sure few people can understand. Of course it's still preferable NOT to take 3 kids to the grocery store but at least I have the peace of mind that I can do it if needed, without a nervous breakdown. And tonight we had pulled pork tacos with escabeche, instead of frozen food.

Picked a PEC of Pickled Peppers

Just kidding but that may as well be what I'm saying as far as some of you are concerned I'm sure you've never heard of PECS (Picture Exchange Communication System). It's a communication system for people that can't speak. Our speech therapist started using them awhile back. They are pictures cards that a non-verbal person uses to communicate and request items in their environment such as toys and activities. Back in May I took a bunch of pictures of things that Ainsley is familiar with and printed them onto cards. They laminated them for us at Boyer and we got them back today. I tried them out and Ainsley was able to identify the correct one 3 times when presented with 2 pictures! I was amazed to find that she can identify items in pictures. I'm very excited to start working on this with her and I suspect she will learn quite a lot if we start pairing everyday activities with the pictures. The next step is to put it into a binder with velcro attached to the cards and pages so she can look through the book and make choices. It's great for her since her motor skills make it difficult for her to do sign language and the advantage is that anyone (who can see, grandparents get out the bi-focals, ha ha) can use them to communicate with her, not just people know know ASL. It's a long process so look for updates on how this is going over the coming months.

She Rolled

With intent and purpose she rolled to reach her PMV box (favorite "toy") and boy she was so excited when she got it. She was shaking it like crazy and kicking her legs with the biggest grin on her face. This must be important. Our therapist has asked us every visit if she's rolling and it's been MONNNNTHS. I'd have to answer "Not really." She's rolled by accident and there have been times that I leave her on her tummy and when I come back she's on her back but you never knew for sure that she did it on purpose. This time I saw the whole thing and it was very clear.

No Allergies

Recently one of the therapists visiting Ainsley had asked if she had been tested for allergies. I told her she hadn't but that in the past a blood test had showed a low number of allergen fighting cells and since there were no other symptoms of allergies the doctors never pursued that. Their logic made sense to me and this was one instance where I felt 99% certain that the doctors were right. AND I really think if it seemed like it was a possibility they would have jumped all over it. She was even kind of pushy about it. Several other people had asked if there was any chance that allergies may be contributing to or causing the problem, even suggesting that she was allergic to my breast milk back in the beginning, but in the end the final straw was the therapist who seemed so certain that was the answer. I booked an appointment to have her tested so there was no doubt.

And sure enough, after all the pin pricks she has no allergies. They tested for:

corn

rice

wheat

egg

milk

peanut

soy

garlic

dust mites

cat

dog

grass

They could have tested for more things but it would have meant more pin pricks. It made sense to test the obvious things. We added garlic because she once broke out in a rash on her face after having garlic but it's more likely it's just that garlic is so strong on the skin of a babe. They said that pollen and tree allergies and things like that develop after a few seasons of exposure and that she's not old enough. Also there are no symptoms. So that's the logic behind what we tested for. The doctor was really nice and even gave his opinion that giving the Flovent orally (prescribed for use via trach but that is below the swelling). was best.

So it's great. No one wants allergies. Unfortunately it doesn't help solve her airway issues but

that was what I expected anyway.

Note: Oops this was sitting in my drafts. I'd posted to the trach forum and thought I'd done so here as well.

Right after all the pin pricks.

15 minutes later. The red one on the bottom right is the control to make sure the tests worked.

Mmm, Yummmmmmmmmmm!

She finally found her feet! After all the stiffness prior to her hip surgery in November who'd have thought she was this limber! And this was no effort on her part.

A Limo Ride

Tonight we spent the night with old friends celebrating the solstice and a birthday. Of course I brought the kids because I can't go anywhere without the kids, having one with a trach makes getting a babysitter out of the question. And it just so happens that my oldest closest friends are childless. But they are good sports and don't mind the kids coming along. I think it is good for them (the kids) to see adults entertaining and they keep themselves busy in the background. So the night goes along and all is nice. The kids are extremely well behaved and it is very late (by kids standards) by the time we hit the road. On the way home I saw something that caught my eye and made me think. Since as far back as I can remember I've been a bit of a philosopher. While other kids in high school were doing who knows what, I enjoyed staying up late debating religion and other such topics with my friends until the wee hours of the morning. So of course I can make something out of what others see as nothing at all. What I notice, is a large stretch Hummer limo driving parallel to us on the last mile home. I am imagining what people are riding in the back, enjoying themselves free from the responsibility of driving. In our pop-culture obsessed society it is something that people aspire to, to be so important that you're riding in the back seat of a limo, free to enjoy the ride without concern for the rest of the world. Are they dignitaries or prom kids hoping to feel important for a single night? And here I am, riding in the back seat, free of the responsibility of the rules of the road. But it is not the same. Or is it? I'm comfortable enough in the back seat, our car is nice enough. We have leather seats. I'm feeling pretty good after several glasses of wine with good friends. Buuuut, I am only in the backseat because my daughter has a life-threatening condition. As I look out the window I imagine who might be riding in this extravagant limo next to me, perhaps looking out the window. I wonder what they are thinking? Do they have any thought for who is driving next to them? We are having a very similar experience yet I am sure our feelings are not the same. Do I feel lucky to be riding in the backseat for the safety of my daughter? Do they feel lucky? I'm not sure. Why do we hold onto these crazy ideas of what makes us important and what is exciting. The human mind is tricky because everything is truly what you THINK it is and you never know what it is to be someone else. And the person you're envying in the limo next door might just be more miserable than you even though they have no reason in the world to be.