Apr 29, 2013

Today's Botox Procedure

We had a 10:00am check in time today. When you don't get the 6am slot then things tend to run late. Which they did today, it was after noon when I finally rolled Ainsley back to the operating room dressed in my "marshmallow suit"(such a glamorous look). It helps keep her calm if I'm there with her and we don't need her aggravating her airway by crying right before a laryngoscopy.

Luckily we had her NovaChat 7 communication device with us to pass the hours (we paid to unlock it for her birthday so it is now a fully functioning Samsung Galaxy Pad).

Check this out. We used the WiFi to connect to Netflix and after her episode of My Big Big Friend (I really wish she'd never discovered that show) was over she was able to navigate by herself to find a Curious George episode. Considering the lame TV shows the hospital offers it was a lifesaver!

They even let her take it back to the OR. Don't you wish you could wear one of these? I actually had a pretty stylish outfit on under that suit.

They gave her only a little sedation for the sleep endoscopy portion. Just enough to simulate sleep (as best you can when it's induced like that). The surgeon then used the endoscope to look at her anatomy to see if he could determine the area where the obstruction occurs when she sleeps. Since she sleeps beautifully with the trach they had to CAP her during the procedure to simulate non-trach sleep(as best you can since a portion of the airway is taken up with the cannula i.e. trach tube). He noticed that there was a fair amount of collapse in the soft palate area (roof of the mouth by the uvula). There was lingual (base of tongue) tonsil tissue (remember he opted not to remove it during her T&A last year) but he felt it was probably not obstructing. The vocal cords were barely moving. That last area of obstruction was exactly what I expected and is the most problematic. Though the soft palate may be significant during sleep as well.

Based on what he saw he thinks it will be a miracle if the Botox works. It will be at least 5 days before it takes effect. So we will wait and see.  Honestly we weren't too surprised to hear this and went into this with low expectations, hoping for the best, but expecting little.

During the sleep endoscopy CPAP did help her so that is still an option for sleep which is her biggest obstacle to decannulation(removal of the trach) . But there are other problems like when she coughs, cries, gets exerted and probably when she is sick. Remember we are talking about with the CAP ON, in other words breathing through her nose and mouth like you and I. When she breathes through the trach she is FINE, 24/7.  To decannulate we would want to know that she had a safe airway all the time. We have no interest in taking the trach out just to have her struggle for a few months and have to put it back in. Right now her airway isn't good enough to decannulate.

The doctor again today said something that I think is really important for trach patients (or their parents) to understand regarding airway anatomy. This one little bit of information really helps it all "click into place". And that is that the muscles that open the vocal cords are not the same and are weaker than the muscles that close the vocal cords. You can compare them to the jaw. The jaw is much stronger when you bite down than it is if you are trying with all your mite to open the jaw.  In Ainsley's case the airway seems to shut closed easily under stress (coughing and crying). And since she doesn't have strong opening muscles she would have trouble if she got exerted, really sick or when she sleeps because she is so relaxed.

IF (note BIG IF) the Botox worked it would create a small opening through the vocal cord area that might be just enough to allow her to sleep without the trach and manage better during the other stressors. Right now she is breathing through a trach tube that is about the size of a small drinking straw. So really we don't need a huge change.

Even though the surgeon isn't optimistic I hope we will at least see enough of a change to give us some indication if she can protect her lungs with an "open airway". If the Botox opens the airway and she doesn't get sick from aspiration then perhaps we may consider the following surgeries: a vocal cord lateralization or partial vocal cordectomy. As I said in my last post, this is one of the reasons I work so hard on feeding. Improving her swallow protects her lung health.

So for now we wait and see. I will keep you all posted with any changes.  Although in the grand scheme of things this was a small procedure it's still traumatic to the child. 
As you can see here she was very upset after coming out of anesthesia. She doesn't really understand if something terrible is coming next. And she hates the tapes, wires, blood pressure cuff and especially the IV.

She is so much happier once all that is off. But she still needs a little TLC before she is fully back to her happy self.  Hopefully by tomorrow because she is back to school and also has hippotherapy.
Thanks for checking in on us. I'll be sure to post if I see any changes from the Botox.

Apr 24, 2013

Modernizing & School Visit

I think I might have mentioned that my cell phone was a casualty of a busy therapy day six months ago. I was struggling to manage Ainsley in her wheelchair, with all our therapy gear, over the curb after therapy(no handicap access where I parked) with my purse looped over the handle of the chair. My purse fell off the chair and little did I know my cell phone slid out of the outside pocket and under my car.

That night Steve and I were going out to dinner for our wedding anniversary and I wanted to make sure I had my phone, but I couldn't find it. So I called my number and someone answered. I was shocked to learn it had been found in the therapy center parking lot. I'd RUN OVER IT WITH THE CAR and the glass was crushed. We picked it up that night and sure enough it was a MESS.  Amazingly it continued to work.

The phone was a cute red Razor that Steve and I bought during Ainsley's 2nd cranial reconstruction surgery when she was 9 months old. We were long overdue for new phones then too and since it was a long surgery we had time to kill. I took a picture on it when we got it and the kids are so little. Ainsley was still in an infant car carrier.  It's been on my screen ever since. In some weird way it made me kind of sad to replace it. Plus I loved that it was so SMALL. And CHEAP. (We were paying $60 after taxes for 2 phones.)

Steve works in the tech industry so he's been bugging me that we really needed to keep up with the times and get new phones. He found it embarassing.  Whatever. My phone was having difficulty keeping a charge because of the damage. After 6 months of using a duct taped phone I finally agreed over Spring Break that it was time to take a look.  We took the kids bowling so we hit the mall while we were over there. We bribed them to be well behaved with a visit to the Lego store. That was the extent of our spring break fun while others were off on fancy trips.

I was surprised to find it would have cost me the same amount to buy a non-smartphone if I didn't sign a contract since the phone cost isn't subsidized. I didn't want to commit to 2 more years so my hand was forced and we did it. Because of Ainsley's medical conditions I need a good reliable phone so the nurses can reach me at all times (& the schools too for the other kids). I hate to spend so much more money each month but knew it was time. We're fairly techy people. I'm a blogger after all.

I was pretty disappointed in October when we paid to unlocked Ainsley's communication device, so it is a fully functioning Galaxy Pad, that there are a fraction of the apps available.  Most of the super cool speech and language apps are made for Apple devices ONLY.  I got an Iphone5 so now we can download those apps and let her play them on my phone. Ainsley had her IEP last week and I was recalling how at one time we weren't sure Ainsley would ever be able to use a touchscreen, especially a small one. She could barely point. Boy has she learned! It's amazing. I got a Speck Candyshell Case and a military grade screen protector, but I'm not sure if that means it's "Ainsley Proof".

The other cool thing about the phone is that we have a Sonos System and I can actually control the music player through my phone like a wireless remote. I love listening to music and I need to do it more. I've been having fun customizing my own Pandora station. Technology is amazing.

You all know I have a big digital SLR camera. I'm kind of picky about photos but lately I've been pretty impressed with some of the phone pictures I see people taking. Usually I always carry around a pocket sized camera in my purse, but I might stop doing that if I like the phone pics and video.

Speaking of which I took some pics and video with my new phone at the school last week that I want to share which is kind of the reason for this post. (Also for my friends and family who read the blog I kept the same phone number and now you can text me if you need to.) Now to the good stuff, ie. pictures and video.

Our nurse needed the day off so I attended school with Ainsley. It was enlightening. Let me just say that nothing is too small to be included in your child's IEP. I have made some requests.

I was surprised to find that Ainsley is doing simple math. The method of instruction really means they are counting.

The instructor helps Ainsley write the numbers. (She is not yet able to write.)

PE was eye opening. I had no idea that the kids were using so much of the gym or that Ainsley was moving around so much and so quickly. I sure hope the nurses are able to keep up. I let her get away from me to take this picture. She loved the giant balls hanging from the ropes. We tried to keep up as best we could, hopping, skipping, doing push-ups and situps.
It's tough when you are differently abled.
They have some quiet time while they also watch educational videos at the same time that the teacher instructs through song. I think it's a bit much for Ainsley all at the same time, but she was very focused on the play at least.

During PT she rode their Rifton trike to the playground.
 We're still trying to decide what to do for home. Now that the weather is better it's back at the top of my to-do list. A new Rifton (like the smaller and older model shown in the picture) costs $1,400. Since we didn't raise that kind of money we are considering alternatives. The money is safe, so if you donated, don't worry that we spent it. I want to make sure whatever we buy lasts for the next several years. Doesn't she look cute?!

She can hang (by herself) for about 20 seconds.

She's still a bit scared of slides but did it anyway.
I saved the best for last. Check this video out.

I hope you enjoy the rest of your week. We have a pre-op appointment for the Botox Procedure (it's procedure because it's been awhile since Anesthesia has seen Ainsley) and a Pulmonary appointment tomorrow. Evie has a friend visiting this weekend. And there is something else going on that I can't talk about. I'm sure the days are going to fly by. Think good thoughts for us for the procedure on Monday and I will update the blog afterward.

Apr 22, 2013

Botox To Vocal Cord (Closing Muscle)

Earlier in the month Ainsley had an appointment with her Otolaryngologist (or ENT for short) to discuss a procedure we had planned for the spring. Usually when we see him he performs a nasendoscopy where he inserts a small camera (think like a strand of spaghetti) down her nose so that he can view her vocal cords while she is breathing. Usually that means she's struggling because she doesn't like it and always cries, and she always struggles to breathe if she is capped while she cries.   As she gets older she is able to be more compliant so we got a decent view this time despite the crying. What we saw wasn't too much different from what we've seen in the past. Her glottic area that surrounds the vocal cords is quite swollen.  If you watch the video you will see that.

The procedure is to inject Botox into the muscles that control the vocal cords. He would be attempting to keep one of the muscles that CLOSES the vocal cords from working as well so that one vocal cord doesn't close as easily. This would give her a kind of partially open airway at all times. The Botox lasts about 2 months. The goals are:

1) To see if the small degree of opening it achieves will help with her OSA(Obstructive Sleep Apnea) enough that she could sleep with a cap on. (She sleeps fine so long as the trach is open.)
2) To see if she aspirates if her airway is open.  She's gotten better at swallowing (This is a big part of why I work so hard on oral feeding, to improve the swallow to protect her lungs.)
3) To see, if she does aspirate, if it causes any lung problems or not. Since the Botox wears off we can stop it if we don't like the results and it isn't permanent like surgery is.

If the Botox does good things for her we would likely keep doing it, but it does require a trip to the operating room every 2 months. If that were to happen she would likely get a smaller trach, and wear a cap 24/7. IF that went well she might be able to have the trach removed (Notice the BIG IF.). The hope would be that eventually she would be big enough/strong enough that she would no longer need the Botox. All of this would be a long process.

Based on what the ENT saw during the nasendoscopy she has pretty decent movement of her vocal cords so he's feeling less optimistic that this is going to be "the fix" for Ainsley. He has another patient (with a different airway) that it has worked for.  In our case it's hard to say what the chances are of it working but it's worth a try and it will give us some good information. Hence why the ENT is still willing to try it.

The procedure is scheduled for next Monday, the 29th. At the same time the ENT is going to do a sedated or sleep laryngoscopy where she is made to sleep but not as deep as with normal sedation and he will evaluate her anatomy to see if he can determine the area of obstruction while she sleeps. (I suspect the vocal cords area.) Since it won't be natural sleep I have to wonder if it's really going to give us answers. She'll also get a normal laryngoscopy.

I always like it when we have something like this going on because it feels more like progress that "wait-and-seeing".  Ainsley has been doing really well since she recovered from being sick in March. I think the Tobi-Nebs really helped her kick the Pseudomonas that trach kids are frequently colonized with.  She's been able to wear her cap during the days for the most part and has needed minimal suctioning so I kind of hate to mess with a good thing. If things go badly she could get really wet, need a lot of suctioning or even get sick with pneumonia. If we don't try we'll never know. It could be just what she needs. Please think good thoughts for us that it turns out to be a good thing or at least not a bad thing.

Apr 18, 2013

Eating Mega Post

Eating is such a seemingly simple thing it's really hard, I think, for people to understand how it is that some people can't do it. Life without eating is for most of us, unthinkable. When people find out that Ainsley is tube fed they look perplexed. First they ask if she can eat. Which she can. Then they are even more confused. Yes she can but she can't. It's a complicated thing and when I explain their eyes start to glaze over and I can see they clearly don't get it. Even family. The subject came up as recently as Easter. I tried to be patient as I explained it for what feels like the ten-billionth time.

Remember this picture from my Hippotherapy post?

That circled part of the brain is the cerebellum. The portion of the brain that plays a large role in motor control. Ainsley's is undersized as you can see. That's called Cerebellar Hypoplasia. Eating is in fact not simple but a complex motor function involving coordination of the tongue, lips, cheeks, jaw, throat and esophagus (though that's mostly automatic). It takes a lot more effort than you'd think. If you eat wrong it can result in food going down the wrong way. We all know what that feels like and it happens to even the most experienced of eaters from time to time.

 If you think about it babies aren't born able to eat table foods. And once they can eat smooth baby food you can't immediately feed them hamburgers. They master one type of eating and then move on to the next type and so forth until they are proficient eaters. It happens quickly because they have brains that learn easily and muscles that are easily controlled by their brains.

For Ainsley, because of CH, any motor skill (which basically means everything you do with your body) is more challenging. The more complex it is the longer it takes her to learn. And to build strength and endurance. If her muscles get tired she is "at risk" to aspirate, i.e. food going down the wrong way. So she stops eating. Makes sense right? It is hard work for her to learn to eat. And she's not hungry because we tube feed her.

In order to stop tube feeding her she has to be able to eat.

And she won't learn to eat so long as we are tube feeding.

See the problem?

Plus she has a trach, which makes it harder for a number of reasons. It's not why, but a part of the reason.

She also needs a lot of calories because she has a high metabolism due to the effort it takes her to do things. More calories = more food. A problem for a child who can't eat. We don't want her to be skin and bones. That wouldn't help her with motor skills.

All of that.....that is why she is tube fed.
So we work at it. Because we don't want to tube feed forever.

Progress is slow.

And she often regresses.

It can be VERY frustrating. Because it takes a lot of time and work for me (selfishly).

After 6 years of experimentation and trying e.v.e.r.y.t.h.i.n.g I've learned a few things.

  • First she has to be hungry to be motivated to eat. Duh! But seriously it makes all the difference.
  • Second is that I try my best to let her set the pace and not pressure her. Yet sometimes I have to force her to do what she doesn't want to do like eat just a bit more to increase endurance. A contradiction for sure. It's a delicate balance. I try to keep in mind the immensely enlightening  article: Everything Is A Grasshopper by Marsha Dunn Klein. Forcing a child to eat something they find repulsive will backfire.
  • The third thing is that whatever my plan is, I have to be flexible and willing to scrap it if she shows me my plan isn't working for her. She might be doing great orally and then get sick (not from aspiration) and she just stops eating completely and we have to start back at the beginning when she is well. Or she might be doing really well but just can't get to the next level so I'm forced to stop. Sitting at the table for an hour and a half, day after day, can only last so long before I have to throw in the towel and admit it just isn't worth it.  

If you feel an announcement of some kind coming on, you would be right. It's more of an inchstone than a milestone. Did you see those awesome Trader Joe's alphabet graham cookies up there? Or down here?

Would you be surprised to know she ate them?

All of them.

Yeah I thought so.

Would you think it was pretty cool that she signed when she wanted more? And then ate them all?

Yeah I thought so.

Or how about that she actually ate a few bits of chicken nugget (even cut it with her fork), mac n cheese shells and peas?

As in put a pea in her mouth, chewed it and swallowed?

Yeah, I thought so.

You may or may not know I've been taking her to see an SLP since June of 2012? We opted to do this instead of an intensive feeding program because we felt she needed to work at a modified pace due to the CH issues. During the summer I was able to work with her a lot but had to back off when she went back to school.

As part of our therapy (in the office and at home) we've been doing oral motor exercises, jaw bite blocks, and trying to increase her ability to tolerate textures.  I think working on the jaw and the ability to close her mouth has been very beneficial.  Although she was being tube fed we were also offering lots of opportunities to eat throughout the day. She still did much better with smooth purees or munchables and not mixed textures so we tried really hard to work on that but didn't make much progress. But really, who wants to eat graham crackers mixed in applesauce? Nobody. Interestingly her favorite food to eat is tortilla chips which you would think would be the hardest thing to eat because they are so dry and hard to swallow. She will cough sometimes but she keeps going back for more. Sometimes she gags on thick yogurt and won't eat another bite. It doesn't always make any sort of sense. 

That's why I was so surprised when this week she was willing to try eating a few bites of roughly blended spaghetti and meatballs. I've tried this SO many times over the years, only to get the result of gagging and retching and complete rufusal.  SO THIS IS HUGE PROGRESS!!!

And then tonight she ate this:

Left over homemade beef stew.

Then when she'd eaten a bit but was tired I pureed it some and she ate a little more:

Look at those chunks! Then she told me with her communication device several times to "warm it up" (in the microwave).
Then that it was salty.
Then that she "didn't want anymore".

And that she "needed a drink". Which she did. She always likes water more than milk.

And then after all this I pureed it completely smooth and she ate a few more bites, before I then tube fed what was left.
 And THAT is how a meal really can take an hour and a half.

Did you notice my nifty mirror? I finally found a decent mirror for our oral motor work.  The base can also be used as a handle and because it's bulky it's quite stable. The idea of the mirror is that it helps if she can see what her mouth is doing while she is eating. My last one broke. I've been wondering....Do you remember those big rectangular stand mirrors from the 80's? Why can't you buy those anymore?! And if you have one you aren't using, can I plllllease have it? Call me stubborn. I'm just not going to spend $79 for this one even though I ought to since I've spent SO much time trying to find a $10 alternative.  (And it used to be $69. It keeps going up in price!)

Using a mirror while she is eating can make her more aware of what her mouth is doing but it is also beneficial for watching while trying to make speech sounds. Unfortunately though she is still not quite able to imitate sounds. It would be a huge help to her language development if she could.

You might be interested to know eating really helps prepare the muscles for speech by strengthening the lips, cheeks and tongue. It's hard to speak if any of those muscles are weak and eating is the best strengthener. On April 8th we started her on a somewhat reduced blenderized diet. Instead of 4 feedings we are only giving 3, plus oral snacks. I've seen some real improvement over the past week or so because she is now HUNGRY and as a bonus I'm also hearing her make some new and louder sounds. Both while she is eating and while she isn't.

We've been in a tough spot because she has been bored of the blenderized formula that is more nutritionally complete (includes all the food she might eat in a day in one blend). So instead of making one daily blend I am trying 3 different flavored blends for breakfast, lunch and dinner. Time permitting I puree the actual table foods she attempted to eat orally and present different textures.  Even though I've done this type of thing so many times over the years this time it feels different.

Ainsley had her IEP this week and I just found out she hasn't been sitting with the rest of the class during lunch, but was at an adjacent table with other kids who (mostly) have feeding difficulties.  Sometimes she was being fed in her wheelchair even though she isn't wheelchair bound and sits quite well.  I deduced this by the fact that I'd washed the wheelchair last week and found it covered with food. 1+1=2, you know? Aside from the mess she should be eating with the bulk of her class, even though she is tube fed and is too slow to snag a spot at the table (they only have space for approx. 80% of the kids so 20% sit at the big table). So I've asked that it be added to the Special Accomodation section of her IEP. With any luck they will figure out a way to work this out quickly and maybe we'll see some further growth in her eating skills if she is motivated by eating among her peers. Which I think she will be. It's a total bummer to have missed 7 months of this opportunity, but better late than never.

Maybe, hopefully, I've devised the perfect feeding plan this time. Only time will tell, but I'm optimistic. Hopefully I'll have the energy to keep it up. It takes a lot of work. But I'm trying to keep my eye on the prize which would be no more tube feedings.

In case you want to hear her new loud voice watch this:

Apr 14, 2013

A Lost Tooth

There are a lot of ways that having a medically complex special needs child takes extra time. Everything takes longer because she needs help with everything but also there are unexpected things that just "pop up". Or pop out as the case may be. Normally when a child has a loose tooth you hear about it, and little else, for weeks prior. Then when they lose it they come running to show you. But when a non-verbal child looses a tooth it's a whole different experience.

Ainsley started getting loose teeth kind of early, at age 4. Even though they were loose they held on and she didn't actually loose the first one until November 2011, when she was 5.  Since then she's lost a bunch of teeth. I thought she'd lost all of the 8 that typically come out first, the 4 front uppers and lowers. Her smile has been quite toothless for awhile.

I was getting ready to leave the house Wednesday when I looked at Ainsley's mouth and saw a gaping hole. I was pretty sure she'd had the tooth the day before. I could clearly see the socket where it had come out. I thought she'd lost that tooth already and that there was decent chance that it was an adult tooth that had been knocked loose. (Recently a baseball player on Adrian's team had his tooth knocked out during a game so I knew they can be reset if you act fast, like within an hour is best.) Of course I had no idea when the tooth had been lost or where it was. So I scrambled to find it.

Ainsley's nurse hadn't noticed so I didn't know if it happened during the night, or the night before or just that minute. I retraced her steps, checked the bedroom and the TV room floor, under the kitchen table but didn't see it anywhere. I called the dentist to make sure he could treat her if it was an adult tooth, but he was with a patient (and the receptionist didn't seem to get that losing an adult tooth is a big deal) so I waited for him to call back. Her last x-ray was from 2011 and too old to be any help.

Then I pulled up the pictures I'd taken of her eating a snack the night before. Sure enough the tooth was there. So I found last night's dinner scraps in the garbage in case it was mixed in with the food she'd spit out. I recalled she had a weird reaction while eating. In this one case I was actually very glad that Steve didn't put it into the compost like he should, considering I'd emptied about 1,000 popcorn kernels and bits from our popper into it the night before, imagine looking for a tooth in that. I picked through Ainsley's left over shells & cheese, chicken nuggets and peas as well as all the trash "just in case" the tooth had fallen to the bottom.  Fun times.

Then I pulled up the blog to see when Ainsley lost her first tooth and moved forward through my photos from there to see which teeth she lost and when. I was able to determine that in fact she'd never lost that tooth so it was a baby tooth and just about that time our nurse found the tooth near a bar stool in the kitchen. I'm assuming since she often pulls herself up into a stand there that she bumped the tooth or the counter top and lost it without anyone noticing. I could also see there wasn't much of a root so it was in fact a baby tooth and the crisis was over. I called the dentist back to let them know that it wasn't one of her adult teeth.

What a relief! But it would have been so much easier if I could have simply asked her about the tooth and she could answer me.

Now Ainsley's smile is becoming much more balanced and I feel better about the fact that the top 2nd over right tooth hasn't come in after so many months, now that I know she hadn't even lost the 2nd over left. I think that probably means that the jaw is now big enough to start pushing those adult teeth down. I'm excited to see her "new smile" as the adult teeth come in.


Just in case you noticed I thought you might like to see a full shot of Ainsley's new bed with her "new to her" Pottery Barn Teen bed linens. I bought them off E-bay and there was a problem. Be careful who you buy from when you buy off E-bay. I fixed the quilt and it is usable so I'm not as mad. In the end I think it's pretty cute. Once I forget about the drama I'll like them better. Ainsley's sleeping more comfortably and I'm glad to be done with it all. The next step is to sell the crib and then I'll be officially moving out of the stage of my life of having babies. Ainsley is a big girl now.

Apr 10, 2013

Hippotherapy at Little Bit

I've been intending to write a post about Ainsley's "new" therapy at Little Bit. Ainsley started therapy through a local birth to three center when she was just 4 months old. At that time we had in home services, meaning the therapist(s) came to our home to work with Ainsley. Because of that connection we heard early on about a special kind of therapy called Hippotherapy (horse riding therapy). It is supposed to be very beneficial for improving balance but with all the surgeries Ainsley had (including two in which she was placed in a spica cast followed by a hip brace for long periods and obviously you can't ride a horse in that condition.), plus we had so many other areas of concern, that it just wasn't a priority.

Little Bit is located in Redmond so when we moved there in 2011 it took the commuting out of the equation and we went through the process to get added to the wait list (lots of paperwork). On Ainsley's birthday 2012 we got the call saying there was an opening for us. Steve was between jobs but we just couldn't pass up the much coveted spot. The sessions are not covered by insurance so it is a lot of money to pay out of pocket each month. But how can you put a price on walking? So we agreed to try it, using funds from our savings, and stop if we felt it wasn't helping. (Thankfully he got a new job shortly afterward.)

The condition that Ainsley has, cerebellar hypoplasia, makes all motor skills more challenging for her. If a person was to observe her they would notice that she moves slower. The reality is that the portion of her brain that controls bodily movement is undersized. I don't think I've ever posted a photo but thought it's time I did. The brain scan below was done in December 2010 when she was 4.  Ainsley is affected similarly to people with Cerebral Palsy which is really a very broad and general category of conditions. (Cerebral refers to the cerebrum, which is the affected area of the brain (although the disorder may involve connections between the cortex and other parts of the brain such as the cerebellum), and palsy refers to disorder of movement.) Most commonly people think of  people they've seen with Spastic Cerebral Palsy. The thing is that CP cannot always be detected with brain scans and may be diagnosed by symptoms alone. As you can clearly see from the image below there is no difficulty seeing the large black area that should be mostly filled by Ainsley's cerebellum. So Ainsley's condition of Cerebellar Hypoplasia is more specific than a diagnosis of CP in which sometimes little is known about the underlying cause.

Having Cerebellar Hypoplasia is why it is difficult for Ainsley to do so many of the things that we take for granted.  She is smart, clever, cute and amazes us, but progress is still slowwww. It takes her longer to learn things. Once she's made the neural connections and mastered a skill it sticks with her and she can build upon it. Sometimes becoming quite quick at the movement. Only time will tell us what she is capable of.
 She's been riding for 5 months and in that time she has grown to really enjoy her rides, she's gained a lot of trunk stability while riding, and she is now stable enough that she can do activities like reach out for a ring, transfer it to the other hand and place it on a stick with the other hand all while riding. My goal is that Ainsley improve her sense of balance and timing so that she can stand independently and walk. No small goal.
This week Little Bit moved to to a new location a few miles away called Dunmire Stables. The facility is larger and will allow them to service more children. 

Here is Ainsley at the mounting platform about to get on her horse.

They ride on a thin pad rather than a saddle. Feeling the horse's movement during riding is a big part of the therapy. Their gait is similar to humans so it gives a sense of the pattern and movements of walking.

Here she is grabbing the ring with her left hand.

Transferring it the other while riding.

And then placing the ring over the stick while riding.

We'd had a 2 week break, so it was nice to see how happy she was to be back.
A closer shot of her and her Norweigan Fjord horse, Wikki. Looking cute wearing cousin Emily's horse vest (lucky we tried it and amazed it fits at size 14).

They have a swing in the new therapy room and it is a great addition to the 15 minute physical therapy portion of the session which happens after the riding.
I shot a couple of videos so you can see. 

It's times like these that I wish finances weren't an issue. She is making progress, it's just slow, so I'm just not sure if it's $460 a month worth of progress or if we will even reach our goals in the end, or if we do if it will have been because of this therapy.  I'd been having these thoughts and our therapist said to me this week he wasn't sure when Ainsley first showed up (her case looks pretty grim on paper) but that now he knows she "was meant to be here." There are moms at the stables who's "children" are in their 30's and they've been coming for 25 years because they believe it's that beneficial. I'm reserving my opinion for a bit. Now that my Steve is home we are stepping up our home therapy regimes a notch. With a kid like Ainsley the real work has to happen at home. An hour (or 4) in therapy each week just isn't going to get you where you want to go.

Progress or not. Walking or not. Eating or not. Speaking or not. I'm just thankful that she is so happy.  She puts a smile on my face many times every single day. Even the tough days.  I love her more than words could possibly describe.

Apr 5, 2013

A Beautiful Easter

I had to laugh when I opened up my blog and saw the title of my last blog post. There was no snow to be seen. In fact Easter in the Pacific Northwest usually requires rain boots and this year we had SUN! It was a beautiful day. Couldn't be better, in fact! I worked really hard to make it nice and be well prepared, since we are so busy, it is often really hard to pull it all together. Of course it wouldn't be a holiday (for us anyway) without working the night before into the early AM. But it's worth all the effort. My kids love the holidays and they are growing up fast and it won't last forever now that Evie is nearly a teenager. Plus it was nice to be able to make use of our beautiful yard for the enjoyment of our family. It makes the hours spent working in it feel more worthwhile when it gets used.

I feel like I owe you some pictures, so get ready, here they come.

When the kids woke us up at the appointed time (we agreed the night before) we opened the curtain to find Ainsley sitting up in bed. She needs help being disconnected from her equipment. I sure wish she could talk so we could hear what she thinks about all of it.
Based on her expressions though I'd say she was very excited.

Evie and Adrian still love to sleep together on non-school nights, so the Easter bunny set their baskets side by side in Adrian's room. I was pretty impressed that the kids didn't mess them up before I got up and took a picture.

It's our tradition that they "open" their baskets in our bedroom while we have coffee.

Blowing bubbles. Check out Ainsley's sucker bouquet. There are 5 flower shaped suckers wrapped together. So cute! And it's something she can actually eat.

This bumble bee spins and I swear it feels like a buzzing bee.

Evie using Adrian as a human drum to play a song.

Moustache silliness.

Adrian making a top hat from his Easter egg collection bucket.

My favorite springtime vase, little rubber rain boots.

The tablecloths I searched everywhere for. Since Ainsley had been sick the stores were way picked over by the time I could go shopping, and they didn't have the sizes I needed. (Believe me, I checked every single store.) I was lucky to find these even though they are a wee bit too small and likely won't fit after they're washed. I REALLY hope this is the last holiday I need table linens for.

I had people bring desserts so I never got a better shot later after the rest were put out (and after the plastic was taken off) since it was so busy. Shoot. Would've made a great shot. Oh well.
These Beatrix Potter figurines are usually in Ainsley's bedroom on a shelf but I thought it would be nice to bring them out for the holiday. I inherited them from my mother. They are quite old.

I mixed up the cheesey potatoes real quick before we started the egg hunt so I could put them in the oven as soon as we finished. Nobody ever goes hungry at my house. EVER.
The kids filled 120 or so eggs earlier in the week. The adults hid them with instructions not to make it too easy. I think they had a lot of fun and found some great hiding spots. I suspect we'll be finding eggs throughout the year.

The kids ran around so quickly it was tough to get shots of the egg hunt, and since we hid them all over the yard I practically had to hunt for the kids to get my pictures (we have 3/4 of an acre).

Adrian made me nervous climbing on stuff. The poor kid had a collision at school last week and got a very badly swollen cheek which then turned into a black eye. It was bad enough we thought it might be fractured and I had to pick him up from school and take him directly to urgent care. This was the day before he perfomed a leading part in the school musical, of course. Then Easter morning he slipped on the stone path and did a total faceplant, hitting his forehead on the stone and getting a scrape over the other eye. He was so excited this year. I kept telling him not to run or climb on things. Sure enough later in the day he fell again, and hit the back of his head.  He was a mess on all sides of his head. But he's doing better and made it through the rest of the week without getting hurt.

We set eggs on the patio for Ainsley. Grandma and Grandpa helped her find them and place them in her basket. They had a great time.

I love this picture of Evie bounding through the yard dropping eggs as she goes.
We made the kids save this one for Ainsley. It turned out she wasn't content to stay on the patio and she did make her way out into the yard in her walker. I didn't get any great shots though. I was trying to do too much so I missed my photo opps.

The cousins (minus two that didn't make it).

One of the aunts was nice enough to take this shot of our family. Finally I have a nice photo of all 5 of us. Though I have to say I don't look like me, wearing colors and not black.

Afte dinner, during dessert Evie performed on her guitar. I'm so proud of her for being willing to get up in front of a group to play at her young age of 12. I know I can't sing and play guitar at the same time plus I would be too embarrassed. So I think it's great!
It was a long tiring day for me as the host. Bless Steve, the kids were begging to dye eggs and he did it. (I'd boiled them the night before after the kids went to sleep.). By the end of a long week and day my feet were killing me so I had to sit.
Ainsley is able to participate (with a little help) and she loves doing this stuff too.
Just in case you need proof of how quickly time passes here are some photos of Easter's past.
This was the year the Bunny visited. Evie was scared. It was Adrian's first Easter. He was cheek pinching cute. I wish I'd thought to get a shot of the two kids together.

They really did have fun even if they look miserable in this photo with grandma.

This was the year Ainsley was born (her birthday's in October). Change was coming and I had no idea. That's the thing about life you never realize how good you had it until things get harder. This year Evie's doll Isabella had an identical matching dress. It was so cute. I wish I could still find those dresses that come with a free matching doll dress, especially in big girl sizes. It's crazy to think Ainsley is now too big to wear this dress.

This was Ainsley's First Easter and I really wish I'd taken a group shot but I didn't. Times were tough then. I remember I barely had time to get Evie a dress so I picked this one up even though it was far more formal than necessary (people here are more casual than in other parts) because I didn't have the opportunity to find something else. I had very limited nursing time then and Ainsley required a lot of care.

Could Ainsley really be only 1 1/2 here? She looks so much older. Well she had been through a lot. She was so close to standing then and needed just a bit of support (We did therapy at a birth to three center.) and I thought she'd be standing independently soon, so we tried to prop her up for the picture.

Ainsley got her walker when she was not yet 3. The sling seat made it safe for her to use even it doesn't make for a cute Easter look.

Dang it why didn't we think to get the Safeway bags out of the picture?! Sigh.

Ainsley's still not standing but I got wise and sat her down for the picture and it made for a better shot.
It's turned out that I look at Easter as an opportunity to get a good group shot of my kids, even though the lighting is never ideal (shadowy yards). Surprisingly I didn't freak out when I knew Adrian's injuries would show. I figured I could correct them in my editing software but honestly you have to look close to see his scrapes and bruises. Pretty funny. So I'm glad I didn't get all stressed.
I also wanted to share this sign of progress. Ainsley used to be terribly afraid of all animinatronics.

This is her, deathly afraid of the chick who does the chicken dance, seen in the photos below.

Adrian my sweety. Cheering her up in the way only he can, after the incident of terror.

Ainsley this year with said chick.  She can't get enough of this thing. Notice her eye is wide open (Aside from that it was made surgically too small.) Pretty cool huh? She can use that sling when she wants to so I guess that makes it a success of sorts. She is nearly a year out from the surgery and I suspect things are finally stabilizing. It takes a long time to recover from surgery. I remember my c-section scars pulled every time I got out of bed for about 3 years More on that (the eyes) another time.

I'm wiped and ready for a break. It's my birthday this weekend and I just want to take it easy.   I spent a day in the yard with the gardeners this week and something happend to my foot after being on them too much and I'm limping around today. It's a good excuse, anyway, to stay off my feet. We also start spring break today so when I get back from Ainsley's therapy this afternoon we're due for some family time. Steve has been home for a week or so and it really makes such a huge difference. I'm going to try to enjoy it while it lasts.  Have a great weekend my friends!