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.

Trach Conference Video

This past weekend was the Tracheostomy.com conference in Cincinnati. Unfortunately I didn't feel I was ready to go back so soon. I would have needed to make arrangements in May just one month after getting back. It would have been near imposssible anyway since Steve had a work deadline on 6/15 and was working until midnight most nights last week and the kids were finishing school. Adrian graduated from preschool Friday and Evie had her class sing along on Monday and her last day of school yesterday. I was really sad to miss it and I had hoped to go next year but it looks like the next one won't be until 2010. I hope we don't still have a trach by then but who knows. They did post this beautiful video that they put together for the conference. I challenge you to view the whole thing and keep a dry eye. What an amazing community I've been so fortunate to find!



And my friend Suzanne who helped me through my agonizing camera purchase took pictures of the event. Here's a link to her pictures. http://www.suzanneuptonphotography.com/TracheostomySlideshow/

She's Sitting!

I'D LIKE TO OFFICIALLY REPORT: AINSLEY IS SITTING! Not in the Bumbo, not in the Boppy, not surrounded by pillows, not protected by my legs, not propped quickly to catch a photo moment, but TRUE, REAL UNASSISTED SITTING! I can put her down and leave the room. To say we are thrilled is an understatement!

Here's the timeline of events (with photos of course).


5/18/08 Sitting for a few minutes but wobbly.


5/18/08 A few minutes later. Fell over and hit her head, real good, for the first time. Probably thought "Hey, where did the pillows go?! I need to try harder not to do that!"


5/21/08 A little more stable. During therapy self corrects when she gets off balance.


6/3/08 Thinks to herself "Hey, I think I can do this!"

6/5/08 "Oh, yeah, I'm gettin' this sitting thing down!"

Will post a video soon, promise.

Busy Busy

Lately I've been feeling very busy. I've been bringing Adrian to preschool and staying there the entire time three days a week to help him through his days. Ainsley has therapy 3 days a week in our home. Evie and Adrian both got a stomach bug. Ainsley had a major doctor appointment Friday that required me communicating with the records division at Cincinnati Children's staying up till the wee hours of the night filling out medical release forms. I realized I'd forgotten to turn in the payment for Adrian's Pay For K program. I've been trying to revise Ainsley's feeding formula and get approval from the dietitian. She needs to gain some weight. I've been in communication with the kid's school principal and transportation department to try to arrange busing home from school for the kids next year. We switched the kids rooms and I'm trying to sell furniture we no longer have space for. And finally I've been trying to get Ainsley enrolled in the WA State medically intensive waiver program so perhaps we can get some nursing assistance in the future, maybe even respite if I can find someone qualified to care for Ainsley that doesn't mind being paid $9.73 an hour. I talked with the program director on the phone, scheduled a 2 hour appointment with her this past Thursday and now have been given the overwhelming task of filling out forms, copying all her medical records and providing information so they can make a determination. It's pretty depressing to look at it all on paper. I had to type out her diagnosis, medications, a list of all her doctors and care providers (13 total not including the numerous people we've seen just once that are no longer a part of her team). They want me to provide dates of hospitalizations, procedures, tests and appointments. Seriously. I'll feel hugely relieved when this paperwork is done. Then there is just the regular care for 3 kids on top of regular life. Yes I AM busy.

All my adult life I've felt plagued by this feeling of busyness and a "to do" list that nags at me. Perhaps its from growing up with a mom who did the same. I cannot remember her ever not being busy. And I see this pattern repeating in myself and I don't like it. I've been slowly trying to read "The Power of Now" by Eckhart Tolle. Which I have to admit so far I'm having a hard time with. A page or two before bed and I'm ready to put it down.

Someone a few days ago said to me they have been so busy. Then said "I always feel bad when I say that to you." And I was surprised that before I could really think, out of my mouth popped "We all have 24 hours in the day." I've been thinking what did I mean by that and how did that come out of MY mouth since certainly I have been extra busy lately. Perhaps reading that book hit some sort of subconscious thought. I felt busy before I had kids. Then I had a baby and thought, "Dear God, I can't believe I thought I was busy before because NOW I'm REALLY busy." Then I had a second child and thought the same thing. Two kids what could be busier than that?! Well then I got my answer. THREE kids, one with more special needs than I knew were possible. And I know that there are people who have more than that in their lives. But YET, there are only 24 hours in each persons life to feel busy within. We are busy using those 24 hours in different ways. If you really think about it we are all busy doing something in our 24 hours per day. Even when you are sleeping you are busy recharging your body. But I think many of us FEEL busy. I think it's okay to BE busy but the problem is when we FEEL busy. I'm starting to think one key to happiness in life is to NOT FEEL like you are busy even when you are. That is tricky. Now I'm going to get back to my stack of medical paperwork and try not to let it overwhelm me and make me FEEL busy.

Working on Standing and Sitting Skills

Standing with Some Support From Her PT


Look at her with the car in one hand and the girl in the other. That's real play!



I thought this was funny! And look, no hands!


Ainsley's been working on standing with her physical therapist. With some support she will support her weight on her legs. It'll help, I'm sure, when the hips are fully recovered. I expect that will take some time yet. She's loving the Little People and I've discovered she can open her mouth amazingly wide! I thought that was pretty funny! Why that doesn't make her gag, I don't know.

Self Feeding

What do you mean you're not going to let me dump it in the chair?


Ainsley has had chances to self feed since she was a wee tyke. Like any new eater this is the result. This time I was lucky and it didn't go on top of the head. I don't let her do it all the time and the reason should be obvious. Contrary to what some people think, I don't actually have my ENTIRE day to devote to Ainsley's respiratory needs, tube feedings, medical supply ordering, doctors appointments, oral therapy, physical therapy and educational needs etc etc. When I am not cleaning up her vomit or cleaning out her suction machines I do actually have 2 other children that also make messes on top of piles of laundry and dishes. This is why I don't really like to make MORE messes to clean up by giving my child with severe motor delays a bowl full of food all the time. I do it when I feel up to it. Anyone who doesn't get that just has no idea what our life is like and should try it themselves before they judge.

Little People

My new fun toy. I even helped put away.


Hey, I think I can do this!

Amy, Ainsley's educator from Boyer Children's Clinic, came today for therapy and brought with her......Little People. Fisher Price Little People. I was surprised. Ainsley showed an immediate interest. Thankfully we held onto the huge collection that we had from Christmas and birthday gifts to Evie and Adrian from years prior. When Amy left I pulled out a few and I'm happy to report that they are a huge hit. Ainsley has become increasingly more stable sitting over the last week. I'm not sure, but I think it's because last week she fell over and hit her head. I think it literally knocked some sense into her and she's finally realized it's not so great to fall over. She used to think it was kind of a game because she'd fall onto pillows or I'd catch her. She's been doing much better righting herself and keeping her balance. Today she even briefly lifted both arms while playing.

Ainsley Using PMV

In my post from 6/1 I was referring to Ainsley "talking". Here's a video that is a pretty good representation of how she does wearing her PMV. If you listen long enough you can hear some fluctuation in her "voice". A PMV (Passey-Muir Valve) is a plastic device that fits over the trach. It has a valve that opens during the inhale allowing air into the trach to breath. When the inhalation stops the valve closes and the air must be exhaled through the mouth and nose. Adults on the trach forum have said that wearing a PMV can at times feel like your head is going to pop off. It is an adjustment for a child to breath differently than they ordinarily do. It is the flow of air through the vocal cords that makes sound and gives us our voice. For Ainsley since she has an obstruction (swelling) in her vocal cord area it makes vocalizing difficult. Wearing the PMV is not always comfortable for her. Many parents on the trach forum report that their child doesn't love wearing the PMV and it takes time for a child to learn to use one. We are hopeful that Ainsley will find it easier over time to use the PMV. Until she does or until she gets the trach out we are working on alternative communication methods such as sign language. Due to her motor skill difficulties sign language is not likely to be easy. So we are in the process of developing and using a PECS book (I'll explain in a later post.)

Bacon!

Ainsley's OT has been bugging me to give Ainsley hard munchables. What are hard munchables? Food that can be knawed at. No matter how often I remind her I think she forgets that Ainsley has TEETH. And that she GAGS and VOMITS when she gets the smallest particle of food in her mouth (unless it's finely pureed). Every week or so she gently suggests a munchable and I patiently explain that it's not a good idea. If she munches on the munchable like she's supposed to she'll get some in her mouth and gag and maybe throw up. I've seen it SO many times and with a variety of "muchables". My idea, that I liked much better is to put flavor on her chewy letter P (I bought it from The Therapy Shoppe online). Lots of opportunity for chewing, taste and no risk of vomit. Today with Sunday breakfast we tried flavoring it bacon. I think she likes it.

Reminder to self: Against my better judgement on 6/5 I tried a Clif fruit twist that the therapist brought and sure enough she scraped some off with her teeth and.....vomited. Nice. Don't do that again.

She stands.

Things have been super busy around here lately so I'm catching up on some blog posts.

OK, ok. So I just want to point out that pictures (and words) can be deceiving. Yes it looks like she's really standing. But it was only for a few seconds and she really didn't like it and couldn't sustain it. Still we're proud of this accomplishment but I don't want everyone to get all excited and say to us"Oh I saw she's standing now." It's a long road between supporting your weight for a few seconds with support and true standing. Believe me when the day comes that she's standing for real everyone will know. I may have it written in the sky.

I had someone recently ask me if she could talk?! It can be painful when people ask you if your child is meeting developmental milestones that they are nowhere close to meeting and may never meet. It took me awhile to figure out why she thought that and later I realized that I'd posted on the blog that she was "talking" with her PMV. Easy enough to misunderstand I suppose. So I thought I'd clarify. Sometimes when she's wearing her PMV she will try to imitate voice sounds. So there is fluctuation in the sound. She is very very far from ever talking. For one she can't make sound without the PMV. And she can't wear the PMV for much time and only with one-on-one supervision. In April, in Cincinnati, the docs questioned whether she should really even have a PMV. Because it's very difficult to force air through a swollen airway to exhale let alone make sound. She first needs to be able to regularly spend more time making sounds, practice making those sounds, learn control over her "voice", eventually learn how to imitate specific sounds like consonants and vowels, then learn how to put those together and understand the association between the word and its meaning. It seems simple to us but its a highly complex set of skills that is likely to take her years due to her medical conditions.