My Little "Soccer" Star

It's spring break and Evie and Adrian had friends over today, which was nice, they all wanted to go outside. Where her brother and sister go, Ainsley wants to go. They were super-stars yesterday, tagging along to 3 doctor's appointments spread throughout the entire day. (We have 4 more days before Ainsley will be going in for surgery and had 2 pre-op appointments) Their behavior was impeccable, so much so that their pediatrician praised them. Mostly that's because I bribed them with a reward, a toy of their choice under $5. Maybe that seems excessive but the way I see it is most kids aren't spending a whole day of their spring break going to doctor appointments. And it was SO worth $10 to be able to talk to the doctors in silence. While we shopped for their toys at Bartell Drugs (waiting for a prescription) I found this:

What is this? An inflatable squishy ball that attaches to an elastic cord that you can velcro......

to a walker*......

and rig across the handlebars and fasten with a piece of tape to be a lure.

A reason to walk around in circles.

 A reason to stand on one leg. And kick.

A reason to persevere.

And....a whole lot of fun!

Can you hula-hoop and kick a ball at the same time? Ainsley wanted to try.

Hey, wait! Where're ya goin'?! I wasn't done taking pictures!

*After a lot of red tape and waiting thanks to our PT we FINALLY got the larger sling seat for Ainsley's walker. It's the right size for the walker and a much better fit. We were able to have someone who knew what they were doing adjust the walker for her growth when we picked it up. She's much more upright and is really moving in it! Too bad it's just in time to get casted.

My Stomach Hurts

....And it's not from sticky buns. Ainsley has hip dysplasia in both hips and it requires surgical correction. With all her other medical concerns it's not something I talk about very often. She suffered through a Pavlik harness at birth and later an open reduction on one hip closed on the other and months of being in a spica cast and then more months in an abduction brace. Unfortunately those treatments were ineffective and Ainsley's hip sockets are still not deep enough to hold her leg bones in place which puts her at risk for complete dislocation or painful arthritis later in life.

We've known for quite some time that surgery was in her future if we ever expected her to walk much. The question was when to do it. Although there is a certain appeal to waiting we ended up deciding that it was just delaying the inevitable. Besides, I think that the less mobile she is the easier it will be for her to tolerate being immobilized by the cast and then brace following surgery.  It would be miserable to wear a heavy itchy cast during the summer, the fall would be disruptive to the schoolyear, winter is bad due to illness...so it's now or a year from now. Meanwhile she'd just be getting bigger. Besides if there is any hope of getting her tracheostomy out this surgery has to be done first (you don't want to intubate a delicate airway after decannulation for surgery).

The surgeon was available April 5th, the day after Easter and Spring Break. Although I knew it would likely happen in the next month or so this is a bit of a shock. Perhaps it's good, though, because it gives me less time to worry. This surgery is serious. Here is a description:

A pelvic osteotomy is used when the acetabular index is not improving and there is not adequate coverage of the femur. The surgeon begins by opening the hip capsule up, hence many times the surgery is osteotomy with an open reduction. After the hip capsule is opened, the surgeon will take a wedge shaped piece of bone from the bony protuberance further up on the pelvis. This is the graft bone. Next the surgeon will cut across the pelvis slightly above the acetabulum. The bone graft will be inserted into this cut and held in place with 2 four-inch long pins. Lastly the surgeon will place a spica cast on the child which remains on up 8 weeks. The pins are taken out later, sometimes when the cast comes off and sometimes in a separate operation. The pelvic osteotomy brings the whole acetabulum (socket) down and around without changing the shape of the socket. There are different pelvic osteotomies depending on where the surgeon opens the hip socket (anterior, medial or posterior), where exactly on the pelvis the cut is made and whether more than one cut is made. But the resulting operation is still the same.

A femoral osteotomy is performed when there is adequate coverage of the femur but still the femur can move with the possibility of dislocation. The surgeon begins by opening the hip capsule. The femur is cut all the way across just slightly below the ball area. The surgeon then rotates the top of the femur slightly around towards the acetabulum. The femur is then put back together with a plate and screws. Lastly a hip spica cast is placed on the child which remains on up to 8 weeks. The plate and screws are removed in a separate operation at a later date. The femoral osteotomy rotates the top of the femur around to fit better into the acetabulum (socket) while the bottom of the leg remains unchanged.

Can you see why the thought of them doing this turns my stomach?

After all this is done she will be placed into a spica cast for 6 weeks, then an abduction brace for another 6 weeks. Having already been through this process once before we know what we are in for and it isn't fun. In addition there is likely to be pain, and she will have to rebuild her strength and regain some motor skills which she will likely lose from inactivity. She had pain in her hip for many months following the open reduction and this is likely to be much worse. And,  I suspect this time around she is going to be very unhappy to be stuck in one place. I will try to have her return to school but I'm unsure of the logistics of this. Last time even the special spica cast carseat didn't fit properly. And I have just a week before this starts. The only good thing about doing this surgery is that it will another surgery behind us.

Cognitive Evaluation

Last week I hinted that there was some heavy stuff around the corner. I setup an appointment with a psychologist at Children's Hospital to do a cognitive assessment of Ainsley. Things have been so busy setting up my New Scrapbooking "Business"  and other things that I decided to wait until it was all over to write about the evaluation.

The first step was filling out the preliminary paperwork, the medical history and routine new patient information. There were 10+pages and that was just the beginning. At our first visit in February we just talked about the medical history and he sent me home with another questionare, plus one for her teacher. Filling it out was a lot like when you take your child to the pediatrician for a well-child checkup and they ask you 20 questions about what your child can or can't do. But multiply that x10. Click on this image to enlarge it and see these questions!

I was feeling pretty bad about things after that. We circled a lot of zeros (= unable to perform). Then we went in for testing. This is a lot like tests they do in the birth to three program or for an IEP. They have a big case full of stuff and standard things they ask the child to perform. They are looking to see how much the child understands, how they problem solve, and what types of words can they understand and commands they can follow. I was actually impressed with how well Ainsley did. And so was the doctor. Some examples of tests he did:

• He placed two washclothes on the table, then put a bracelet under one and then switched them around to see if she could find the bracelet.
• He filled up a cup with blocks then asked her to do it to watch what she would do to get the final blocks in (I think there was 2 more than would fit).
• He asked her to get a rubber duck out from under a clear plexi-glass box that had an opening on one side. Then he'd move to to other tests and do it again but move the opening to a different side to see if she remembered how to get the duck out and would figure out that the opening was now on a different side. She figured that out fairly quickly, which really surprised me because of the spatial perception and motor planning involved.
• He used a picture flip chart to ask her to point to the correct picture when asked a question, to match pictures/objects, and more.

We were there about an hour and a half.  She was so good at paying attention. She really shines in that type of environment. Even though she doesn't always understand, and sometimes can't do what is asked she always TRYS and stays focused on the activity. Amazing for a 3 year old.

I saw him again today. He graded her scores over the week and we met to go over them.  It's complex with many categories. I won't go into all that here. What it boils down to is with an average score being between 85-115 she scored 65. The cut-off for mental retardation is 70 or lower. Taken at face value this would put her in the mildly mentally retarded category. In all honesty I though she would be worse than that (Especially after circling all those ZEROS.) so already I'm pretty happy because it's better than moderate or severe mental retardation.

It's easy to confuse physical disability with intellectual disability (Think cerebral palsy.). Even as her mother, the person who knows her best in the world, I have a hard time sorting it out. But as we talked further and considered all she's been through surgically, her physical limitations (due to the cerebellum malformation) and the affect of the trach on speech it seems that she would certainly score higher if she'd hadn't needed the trach, or had better control over using the muscles in the way she wants.  That makes it difficult to interpret the test. Over time the doctor thought her test scores will improve and at age 6 he suspects she'll fall into the 70-85 range which would put her in the low end of normal congnition.  The bad thing about that is it would disqualify her from receiving services that she may still need.

The other thing I learned is that in addition to the score one has to be failing in adaptive skills. So in other words if congitively you score 68 but you function fine, live independently, have a job, relationships etc then one cannot be diagnosed as mentally retarded. Also if your adaptive skills are poor but you score high then you would not be considered mentally retarded (A lot of people with physical disabilities would fall into this category.)

I realize that no doctor can really tell me how things will turn out for Ainsley. She is truly a one of a kind unique person. But after this evaluation I feel more optimistic. We will love her and value her no matter what. And she is happy and a joy to be around. That is what we all want most for our children anyway. 

New Scrapbooking Business

Okay, first of all, yes I know it's crazy. But I've gone ahead with it anyway and started a scrapbooking business. My mission is to inspire and help people get their photos into albums they can share with their family and friends. How? By doing it myself using digital scrapbooking software and posting all about it on my new blog. http://seesusanscrap.blogspot.com/  I know I promised a redesign of Ainsley's blog and it IS still coming, I swear. We're just having a technical difficulty which I hope will be resolved soon.

As the mom of 3, one with intense special needs I don't really know how I'm going to find the time for this new venture but the beauty is after the initial setup I can do as much or as little as my schedule allows. I'm going to give it a go but luckily I don't have to pay the bills with this "job".  There are more samples on the See Susan Scrap blog but here is the two page layout I did of Ainsley's birth, that I created for my sample book. I'd love to hear what you think.

It was so hard to narrow the selection down to 6 photos. Someday I think I'll have to do a whole album to tell her story.

A Record Breaking Mega Post - Fun New Stuff

I've been meaning to post a light happy post but things have been busy. As I looked through my pictures I realize we had a lot going on! But before this is all ancient history here are some of the fun new things Ainsley has been doing in between surgeries this year. She's a busy girl just like her mama. When your child has a malformation of the cerebellum all movements are a challenge. The milestones will come some day for now we celebrate the inchstones.

JANUARY

In January she learned to cover her ears when she hears loud noises (Mostly the high-speed blender when I make her blenderized formula.) She's so proud of this new skill. How cute is that?!

She gained the strength, coordination and control to stand on tip toe (with the support of the couch or bathtub).

She peed in the potty for the first time when I placed her on it in the morning (she had a dry diaper).

She was able to lift and squeeze this large penguin squirter in the bath.

February

She learned to really throw a ball.

She started to learn the joy of dancing.

She's started to develop a new emotional awareness. She always liked to say good night to the kids, but now the hugs seem different, more real. And it seems like she is more comfortable being held and enjoys physical affection more.

She started dragging things around the house, like this tray of bathtub toys we keep under the clawfoot tub. Other times it is a step stool or a basket full of things. She's figured out how to take her toys where she wants and she's got the strength to do it.

She knows when she does something good to clap, and her clap is more coordinated. Here she was clapping because she was doing well wearing her cap.

Along with that new emotional change seems to be an increased fondness for her dollies and stuffed animals. She now frequently asks to take one with her when she gets out of bed.

With the support of the couch and a lot of encouragement she was willing to side step to reach a toy. She's not quite independently cruising yet, but getting there.

She was finally able to get herself down off of Adrian's 8" high bed after giving good night hugs.

I know you saw the video of her learning to kiss. Here is a picture of her giving her doll a kiss when asked. How sweet!

 

Along with the good comes some bad. Learning to pull the table cloth during dinner.

Putting her feet on the table during dinner. That girl is so flexible. One benefit to having lowish muscle tone and hyper-mobile joints.

 
 
 
 
   
Her balance is improving. She can do some pretty funny moves like here where she's wiggling her arms and legs at the same time because she's so excited about catching the ball. I know it looks like she's about to fall over but she isn't.

I was amazed to see she could coordinate her grasp to open this Playmobil seashell that Evie got for her birthday.

Inside was a mermaid. She opened and closed this thing about 10 times.

She is in love with Evie's American Girl dolls, and seemed to actually be pretending to do Kit's hair, using the spray bottle of water and the brush.

This time she ASKED to use the potty (with gestures). Wow! But no goods. Still, she knew to clap for herself. Great, the stage where they pretend they need to use the bathroom just for fun. 

Here you can see that Ainsley has progressed in her throwing skills and is now able to throw a SOCCER BALL by herself. Pretty amazing.

She also has learned to be mischievous. Here she was caught being naughty taking off her cap, and the look on her face and the hunched shoulders show she knows better. If I'm in the room the little rascal will ask first (with gestures and signs) but the second I'm out of sight she just pulls it off. This shows she has a rebeleous streak. Could be trouble.

Part of me wonders if some of these new things are because she can see a little better after having the brow prosthetics placed. That's not to say she couldn't see before, she could, but perhaps she has a wider field of vision now.

I hope this satisfies your desire to see Ainsley's happy smiling face. There will be more heavy stuff later this week so enjoy the fluff while it's here.

You Guessed It...

...More waiting. I hardly know how to express what I am thinking or feeling so I will simply tell you that Ainsley was scoped. As usual it was difficult to see much (as you can see for yourself on the video below). What was different is that this time she was capped and crying at the time. It was good her otolaryngologist could see her struggle. Normally I pull the cap/PMV off when she starts to run into trouble. She did eventually start to turn blue so I then removed the cap. The doctor "thinks he sees some vocal cord movement" and, when asked, he "still sees a small degree of swelling of the false vocal cords". He doesn't volunteer much information in between cracking jokes. The result of the "BIG" appointment? He would like to see how she does capping awhile longer. No serious talk about the cricoid split, nor removing the uvula or part of the soft palate. But he is going to talk to her pulmonologist, because the pulmonologist requested that. So maybe having another doctor to talk to will help him formulate a clear plan of action.

Below is a chart of the glottic area that (we think) might be causing the problem (narrowness due to scarring)...or not since we aren't sure if she has a problem or which problem that's not a problem is the problem, or not, as the case may be. How's that for contradictory and confusing?!



A video of what her airway and glottic area looks like from today.



It is frustrating because when we see this doctor in surgery he seems to offer surgical alternatives with "some" enthusiasm but as soon as we see him in clinic he acts almost as though he's forgotten and seems very un-enthusiastic about surgical solutions, always asking us to wait it out. We've come to nick-name him Dr. Jekyll because it's almost like the surgeon and the clinic doc are two different people.

When asked "How should we get her to keep the cap on" there was silence, thinking but no response. When asked "How or when will we know whether her difficulty capping is "just adjusting" or if it's because the glottic region is too narrow and she needs surgery" there was more silence and still no response. Near the end I believe he actually said something to the effect of, "Sometimes the best approach is waiting and then eventually the right course of action becomes clear." Which I think really means he does not know if the surgeries he previously proposed as possibilities would help her and he doesn't want to be responsible for the decision. And it also means that his big plan is to wait and wait and then when she doesn't improve with age we'll have nothing to lose so we may then decide if surgery is worth a shot.

Okay, okay so this is why I write a blog, to get it out. I guess I do know how to express some small part of what I'm thinking and feeling, after all. And you can probably sense it's not so good. Don't get me wrong, it is so great that Ainsley's airway has improved to the point of being able to wear a cap. But little good it will do us if she still has to keep the trach. Right now the doctors can't tell me if it's reasonable to expect her to breath with this cap on, or if we are making her suffer by asking her to breath with inadequate airflow. But the only way we'll know is if we make her do it. Hmm. I'm not lovin' this plan. I think back to how years ago we tried and tried to have her wear a PMV when her airway was still swollen before her fundoplication. What a waste of time and energy. And poor Ainsley. Looking back I can see it was ridiculous. She wasn't ready. I'm afraid some day I'll have the same clarity of mind about this plan.

Ainsley isn't feeling 100% today, but she managed to wear that cap (although there was a little nasal flaring) for the entire hour we waited to be seen and then during the appointment. And then again even a little at home afterward, before her nap. Hopefully we can keep up the momentum over this weekend and don't regress. The goal is to be capping all waking hours hoping that somehow she stops removing the cap and that she can magically tolerate it while sleeping despite the doc's suspicion that she will have obstructive sleep apnea. And when she can mange this super human fete of doing what he thinks she won't be able to do, then we go see him again to talk about surgery or decannulation.

Home Capping Trials

After Ainsley's granuloma removal and adenoidectomy on Feb 8th we were very excited to try capping again, meaning we place a plastic cap over the trach which then requires Ainsley to breath through her nose or mouth instead of the trach tube.

According to the pulmonologist's wishes we waited until 2 weeks after our appointment with him to allow for any swelling of her airway, due to the surgery and procedures, to return to normal. On Feb 26th I tried making a real effort to keep the cap on the entire day since it is our day home together (no school, nurse & the other kids are at school). It looked like this:

11:40 placed cap
12:00 A removed cap and I replaced it
12:15 A removed cap and I replaced it
12:45 A removed cap and I replaced it
1:00 A removed cap and I replaced it
1:10 A removed cap and I replaced it
1:20 A removed cap and I replaced it
1:30 A removed cap and I replaced it
2:00 She went down for a nap, and thank God, I get a break
7:30 put cap back on
8:00 she took it off and I replaced it. Repeat. etc. (At that point I stopped recording the times because it was family movie night and I just couldn't keep it up. Although she did continue to wear the cap off and on for the rest of the night.)

So day after day we kept trying but as I got busy with other things (Evie's birthday party, Adrian's new bedroom furniture) I wasn't always right there to replace it. Then after last Friday's accidental decannulation I had an epiphany, it was never going to happen if I didn't treat it as serious business. Sure I could request a hospital capping trial so we could really see how she did (and I still might do that), but I could also just take that time at home to really step things up a notch. So that's what we did over this past weekend. She did pretty well so, come Monday, I actually asked the nurses to do the same. In addition to the weekend she kept the cap on all day M/T/W (except naps or when we were driving). Since she was doing well I tried letting her nap with it on yesterday to see how she does while sleeping.

It took a bit to get her to sleep. I'm sure it felt different. As you can see she was being a little rascally, where normally she falls asleep right away.



But she did eventually fall asleep and did pretty well, well great, actually it doesn't get better than 100% but she seemed to have to work for it.



Then right after this picture about an hour after going down I could hear over the baby monitor that she started to struggle so had to run up the stairs to check on her and she then got to the point that she woke and was gasping for breath and crying. I took it off so she could nap. It very well may be that as Dr. I suspected she will have trouble with sleep apnea due to the narrowness of her palate and uvula. She also may need more time being capped during the day to get "used to it". It might be startling to wake up and find you can't breath through the trach like you normally do.

As Dr. D said even failure will give Dr. I information. So hopefully we have gathered enough data because we see Dr. I tomorrow for follow-up. He is going to scope Ainsley to look at her vocal cords while she is awake. And hopefully we will formulate a plan. Although the plan may be to wait. Of course I'm tired of waiting but it may be the reality of our situation. But my hope is that we'll come away with a surgical plan.

The interesting thing that we discovered during these trials is that she seems to like the cap. I won't lie, she does have to work a bit harder. There is some nasal flaring at times but no retractions. At times she gets winded with exertion. And at times I think I hear a degree of stridor which was her symptom at birth. The good is that, I think she finds it easier to vocalize and she likes that. And she's getting to be quite opinionated which is a pain but very cool! I just don't know how we will ever work up to wearing this darn cap 24/7 it just seems impossible. Especially since this is what she really likes to do with the thing.

Out With the Old and In With the New

Adrian is not a small six year old. But he has been sleeping in this bed. It's a cute firetruck but it's a toddler bed and the mattress is the same size as a crib!


Ainsley has so many different areas of "therapy" to work on that I have to try to build it into the day or it doesn't get done. Climbing is a skill that most kids master very quickly much to their parents chagrin. They are found on top of all kind of things they shouldn't be on. Not Ainsley.

She goes to bed after the older kids (because she needs a late g-tube feeding and she takes a 3 hour nap every day) so she comes with me to say goodnight to her brother and sister. One part of the nightly routine was to help her climb up onto this little tiny bed. It took months of work and it's only been recently that she could do this on her own and only the last week or so has she been able to get herself down. It was a good little exercise for her.

But, alas it had to go. After 6+ months of negotiation I was finally able to convince Adrian to part with the firetruck bed and the twin size bed was ordered. When they delivered it last week it was cute to see Ainsley try to push it back into place when I moved it to vacuum the dust bunnies and make room for the new bed. Ahhh, change is hard when you are three. Surprisingly when the new bed was put in place she discovered a new "therapy" use for it, and uses it to pull to a stand and a sidestep here or there. Great! She needs more practice.


What is really surprising is that she loves Adrian's new bed even more. All the kids do, actually. And she has even been trying to get herself down from it! Being a captain's bed and higher than average it is not safe, but it's amazing to me that she feels brave enough to try. So I guess we're on to working on new things. It's funny the ways I measure progress. As a friend recently said, our children's progress is measured not in milestones but in inchstones. Sometimes it's even millimeter by millimeter. But it's progress and I'll take it.

And I'll leave ya with a smile.

A Very Unwelcome Bathroom Interruption

Our neighborhood Hollywood Video is going out of business. Bummer, but the good is that the majority of movies are 3 for $12. So I was stockpiling so we can stop arguing over what to watch on Friday Family Movie Night. We were there so long Adrian had to use the bathroom so while I'm there I figure I'll go too. It was one of those single room type so I just left the big kids to watch Ainsley outside the door 3 feet away. I was in there 30 seconds when there was a very loud urgent banging on the door. I'm thinking "Patience patience, Geez!" but I was done and as I open the door my oldest child is holding up something in her hand and yells, "Mommy, mommy Ainsley pulled out her trach!!!" I squint. Sure enough that's the trach. Gulp! Ainsley looks totally calm and fine. I shove it back in without any lubricant or obturator I forgot to check it for dirt and hair. I just wanted her to have her airway back. Luckily the days when she turned blue in literally 3 seconds are passed. She can actually breath without the trach for quite awhile, but don't get too excited, we don't know how she would do when she sleeps or if she cried. Those times are riskier so this doesn't mean she's ready to get the trach out yet, plus we still have surgeries that have to happen first.

The funny thing is that her ties were pulling up earlier today so I put a brand new tie on right before I left for the store because I was worried about it coming loose. I have noticed the velcro on this batch is sometimes a little less sticky but it seemed secure. Scary. I think she was pulling on it to get the PMV off. Thankfully we weren't in the car at the time. Everything was over so quickly and she was fine but it took me awhile to shake off the weirdness. You know when you have a child that is trached that it's just a matter of time before it happens so you're always on guard but it's still surprising when the trach actually comes out. In three and a half years this is the 3rd time but the first time it was completely out. Evie and Adrian were so brave and knew just what to do. There was a lady there and she was a little freaked out asking "Is she okay, is she okay? Are you sure?!!!" She noticed how great the older kids handled it. I was so proud of them! The best big sister and brother in the world!!!

$86,667 Freakin' Thousand Dollars

I try to keep things G rated for the public but it's hard today. I found a $1246 check from my insurance company in my mail. Cool! Yeah, NOT! I spent over 45 minutes on hold trying to get it resolved because despite what they initially tried to tell me, I was pretty sure I wasn't supposed to profit off the anesthesia from Ainsley's brow surgery. During that time I was on hold, I opened another EOB (Explanation of Benefits, you know those things you get from your insurance company that you never read) and found another claim from Ainsley's January surgery. Now medical bills are high, this you know, but you may not know how high they can be for a medically intensive kiddo like Ainsley. I have looked over many an EOB. In fact I have a special drawer in my kitchen just for the foot high stack of them that Ainsley has accrued in her 3.5 years. But NOTHING could prepare me for what I saw on one of the line items of that EOB today.

Did I mention in my prior post that Ainsley got some snazzy new eyebrow prosthetics custom made from some high-tech plastic for her January surgery? Well I'm going to guess you'll be as shocked and stupefied as me that our insurance was billed $86,667.30 for these little pieces of freakin' plastic. Okay, okay as the lady from the insurance company pointed out that's not what they actually paid, the allowable contracted amount and therefore the actual payout was closer to $75,000. Dollars. Just $75,000. This does not represent the $20,000 OR time, the $5500 surgeon's fee, the $6340 room fee for the two nights we stayed, or any of the $2,700 or $4500 misc fees. Nor does it even include the $1246 check for anesthesia that I received. In total the amount paid out for the brow prosthetic surgery was over $115,000. But I don't know exactly because I feel sick. And I can't bear to add up the amounts. This amount comes out of her lifetime maximum benefit. You know, that cap that we all have on our insurance plans when they stop paying our claims once you reach it. Ainsley needs her insurance money because she IS 3! And will likely live a long life during which she may need other medical care. I am just shocked that we weren't warned. I'd have whittled them out of wood myself. Okay, I guess that's not funny. But man oh man! This surgery cost FAR more than many other far more complex surgeries and officially bumps her up into the $1,000,000 baby club. In the world of the medically intensive kids, this isn't really so bad. Many kids max out their insurance before they even leave the hospital. I guess when you really think about it we are lucky but I sure don't feel that way at the moment. You can be sure the hospital will be hearing from me tomorrow.

Okay, so this is not the feel good post you were hoping for. I owe you one.