Aug 31, 2009


Our Disneyland trip was so much fun! I've been wanting to post about it but had to wait until after the weekend since we were having Steve's family over for a slide show and I didn't want to "release" the photos until afterward. It took me 2 full days days to edit the photos in preparation for the "event" since so many were in taken in extremely low light without a flash, in mixed light (very bright and very shadowed) or while moving. Plus my travel companions weren't too patient about picture taking and I had to shoot fast. I did seriously cull them down from 1500 to about 800. For the brave who'd like to see all of them here's the album link. If you click on slideshow and options you can change it to view them at a faster speed. I considered paring it down further for Ainsley's site but I'm burned out on photo editing so I just included them all.

After a busy summer with Steve working excess hours we really needed a real vacation. This was the first time Evie and Adrian had been on a plane (Ainsley had been on one the year before for a medical trip to Cincinnati). Surprisingly Ainsley isn't afraid of the take off or landing and really seemed okay during the flight while the rest of us complained about our ears. She kept herself busy with the fold down tray and a plastic cup. It's the simple things.

Once we arrived in CA we took a nasty shuttle bus (that we paid good $ for !@#&*!) with film over the windows that made the scenery look very dingy. So Ainsley missed nothing by being asleep on route to the Disney California Grand Hotel where we stayed. Its craftsman style was amazing and we enjoyed our view even if the room was a little small. Ainsley slept on a mat on the floor (with her pulse-ox on as normal). It was very convenient to be able to enter downtown Disney and the Disney's California Adventure Park from the hotel. Although the hotel was so large it was quite a trek from our room. Think Vegas, big. They actually had 10 registration desks, were using them all and we still had to wait in line about 15 minutes to check in. I'm not sure how many rooms there are. It's quite an operation. Normally I'm more a fan of quaint. Still I think it was a great place to stay and was worth the extra money we paid. At least that's what I'm trying to tell the frugal part of me that can't quite get over the price. Everything was so nicely done. Being a fan of the Craftsman era I really appreciated the architecture and design. And there were so many little touches that delighted the kids like: how housekeeping would arrange the kids' stuffed animals when they did turn down service and left Disney character chocolates, the hand towels were folded into little shell shapes, there were even Bambi characters on the shower curtain. The kids loved playing on the deck with some special Disney resort exclusive figures we bought to keep them happy when we were at the room. They discovered a fallen Pooh bear on the roof below our room and were quite distraught. After a few days we called maintenance and they came to rescue him and let the kids take him home. I think that was a highlight of the trip for the kids.

Disney has grown so much since Steve and I were there last, 15 years ago, (being about double the size, Did you know they added an entire new park?!) that there was little time to sit and relax by the beautiful and quite deluxe pool as I'd thought. Since pools and trached kids don't mix real well, that was really okay with me. We were constantly on the go. It was challenging to get around the park and in and out of the rides with an (almost) 3 year old disabled child, since she can't stand, walk or even get in and out of the stroller by herself. Even with official permission to use the stroller = wheelchair and sometimes getting to use the wheelchair access lines it was tiring for SO many hours a day and Ainsley is big for 2.9yrs old. I did walk her through one 40 minute line and she was having a blast even though she was worked harder than she would in therapy. But it was hard on my back and held up the line since I'd often have to lift her up every few feet. I'm glad we did it this year because I can't imagine if she was any older and bigger since I don't anticipate her walking well enough to navigate Disneyland anytime soon. People with able bodied kids just don't realize how hard it is physically when your child is unable to help at all with getting in and out of places. Even at 34 pounds it's exhausting, especially on top of all that walking and negotiating which ride to go on next. I survived with a little help from my friend, Jack (Daniel's that is), and was ready to get up and do it day after day even though it started to feel a bit like Ground Dog Day toward the end.

We were there for the last week of Summer Nightastic and it was more crowded than ever with locals since it was no longer the blackout period for season pass holders so the lines were very long averaging 40-90 minutes, except for King Triton's Carousel so we went on that about 5 times, the kids being big Little Mermaid fans. Still we were able to go on most of the rides that we wanted to. Adrian was terrified of the Matterhorn and then refused to go on several of the rides. Can't blame him really. Evie was a trooper and went with both Steve and I so neither of us had to go alone (since one of us had to wait with Ainsley for a lot of the rides). She even went on the California Screamin' roller coaster and the Tower of Terror TWICE! Both kids earned badges of honor for their bravery in the form of trading pins. I had no idea about pin trading before we went. Of course the kids loved it especially when they were able to trade up for a good pin. Ainsley was great on the rides that she was big enough to go on. The only thing that really scared her was the character breakfast, Eeyore scared her the most, but she was even afraid of Minnie. We also got lucky and got a reservation to eat in the Blue Bayou inside Pirates of the Caribbean. I'd always wanted to do that so I was really excited. By the end of the 5 days and nights our feet were very tired and we were "almost" ready to come home. I'm not sure Ainsley was. She REALLY loved it. You should have seen her wiggling in her stroller with a grin from ear to ear as we set out to the park every morning!

Aug 26, 2009

What's Wrong With Her Eyes?

If I had a dollar for every time someone asked me "What's wrong with her eyes?" I'd be a very rich woman. I'm tired, so tired, of kids (and an occasional adult) asking me this question, commenting that she's falling asleep or asking if she's is blind. It is all too obvious that any time we are in public that even the people who don't ask are wondering the same thing. It gets tiring to have all eyes on you no matter how practiced you are at pretending not to notice. Thankfully right now Ainsley is unaware (I think) of people's questions and looks. But I don't know how much longer that will be. So I've been trying to get her ptosis surgically corrected but it's been quite a process.

Ainsley was born with congenital ptosis and we were told it would be corrected with a frontalis sling operation when she was 3 or 4 years old and she would have a normal appearance. At 9 months of age she went in for her second cranial reconstruction surgery for sagittal craniosynostosis and, sadly, her eyes were never the same. The ptosis went from moderate to severe and her eyes appeared much more slanted afterward. Perhaps due to the fact that she was missing her larger sphenoid wings and bone had to be constructed behind her eyes. We naively expected that she would come out of that surgery appearing "fixed" (after the recovery period of course). Yes, her head shape was more "normal" but the fact that we lost the ability to see (much of) her eyes was an unexpected and bitter pill to take. We had to do the surgery to give her brain enough space to grow so there was really no choice about it but I miss the way my girl looked before the surgery. Forehead and all. She was beautiful to me.

In life how we see everything is all about perspective. I thought the ptosis was bad before the surgery and looked anxiously toward to the day she was old enough to have it "fixed". Now I would give anything for it to be just like it was. I no longer have the hope that her eyes will ever look completely "normal" but it would be nice if they looked good enough that it's not the first thing people notice about her.

Ainsley's cranio-facial surgeon, who we highly respect, referred us to a new eye surgeon in January and he came up with a completely different surgical plan and asked to see her back in June to discuss timing of the surgery (which could have been as soon as this fall). Before I did that I wanted to pass this new plan by the original ophthalmologist and her cranio-facial surgeon and that process has taken a lot of time.

I have had this nagging feeling that part of Ainsley's problem may be that they made some massive changes to the shape of her forehead and brows (she had severe frontal bossing caused by the craniosynostosis) causing a laxity in skin and muscle as a lot of bone was moved around. When I pull her brow area forward a bit her eyes look more like they did pre-surgery. I'd shown this to the cranio-facial surgeon back in December and asked about the possibility of doing brow implants earlier than the anticipated 8 years of age but nothing came of it. Still I couldn't give up on this idea because it seemed to me like it should be possible to place eyebrow prosthetics before age 8 even if it meant redoing it again later if they became too small. My fear was that the eye surgeon would take out part of her eyelid muscle and then, at age 8 when the brow prosthetics were put in, her eyes would appear too open and maybe not even close properly.

Monday we finally saw the cranio-facial surgeon and went over all this. I was a bit nervous that I would be perceived as crazy. Especially since we had 3 additional doctors (teaching hospital)present. I was surprised to learn that yes he could do the brow prosthetic surgery at this age and it can be revised if needed at a later date. Not only that, he agreed that it should be done and in place before the eye surgery. He says that putting in the prosthetics may not have the same effect as pulling the brow forward with your fingers. It may, but it may not. The only way to know is to do it. The ophthalmologist felt that her eyelid muscles were irreversibly stretched due to the swelling from the cranio-facial surgery in which case you would not expect the brow implants to fix the problem. Still, it needs to be done to move forward with any surgery directly to the eyelid area. We shall see if it helps or not after the swelling and recovery.

I am feeling pretty good about this plan, I think this is the right thing to do. But of course I hate that she is going to need another surgery. He will go in through the same scar as before which means weird hair (they'll shave a band from ear to ear across her head) and the all too familiar zigzagged scar for awhile. Now we're just waiting for the call from scheduling since he's booked out about 3 months I expect it to happen some time in November or December unless we decide to avoid the hospital during cold and flu season and push it out until spring. But since she will also get the hip surgery and eye surgery next year we'd like to space the surgeries out a bit. I'm a little shocked that we've gone from no surgeries planned to 4 within the next year. We've done it before and I know we can do it again. Not to say it doesn't make me sad for all she'll have to go through. My poor little sweetie.

Here are some pictures so you can see how things changed. As always you can click on the pictures to view them larger.

Ainsley's natural position of her eyes (without using her forehead to lift) as they appeared the day before her second cranial surgery in July 2007.

Same day, Ainsley's eyes fully opened using her forehead to open them.

The height of swelling that caused damage to the eyelid muscles. She actually couldn't open her eyes at all for almost 2 weeks.

What the incision looks like about a month post-surgery.

Ainsley's eyes on her 1st birthday, almost 3 months post-surgery. This is pretty much how they look now when she is relaxed and not using her forehead to open them.

Aug 11, 2009

Tonsillectomy/Adenoidectomy Surgery

At our last ENT appointment in June I mentioned the question of doing a tonsillectomy and adenoidectomy but didn't get much of an answer. It was still nagging at my mind that perhaps the surgery could help Ainsley so I scheduled an appointment just to talk about that with her ENT. I was fully prepared to get the brush-off so I prepared a 10 item list of all the reasons I wanted him to consider it:

* the redness and bumps at the back of her throat were thought to be from reflux/vomiting but didn't go away after the fundoplication
*her tonsils look large and sore (and always have)
* her previous ENT said she thought they would need to be removed in the future
*the back of Ainsley's throat is already crowded due to the posterior position of her tongue and appears to be anatomically somewhat small (so she needs any extra space, IMO)
*when she cries you can see the tonsils, uvula and tongue compress together (again some extra space might be nice)
*she has a hard time getting enough air through if she's crying while wearing her PMV and cap (so perhaps the extra space of the enlarged tonsils might contribute to the problem)
* in order to smell she seems to have to stick out her tongue (again could be a sign of not enough room at the back of the throat)
*her breathing is sometimes noisy when she's capped, especially while sleeping
*we've heard snoring through her nose even without a PMV
*she can swallow but stops after a few bites, could be from soreness of the tonsils

He then said that her primary problem is that the vocal cords are so badly scarred that they don't open very well which leaves her a very tiny slit to breath through. So he says the tonsils really don't play that big of a part. Then he went on to say that IF her vocal cords were in good condition she would need the tonsils out but since there was no surgery to be done for them then there was no rush. So I thought for sure he wasn't going to do it. He's quite the joker, and said ..."Well now that I've made that as clear as mud...." Then he says it's been awhile since she's had a laryngoscopy/bronchoscopy so lets take a look and then do the operation. Steve is looking at me like "What is going on?" and I reiterate that the surgeon will do the MLB and then if he thinks she needs the tonsillectomy then he'll do it, to which he replied, "Oh, she needs it.".... ???

He was very clear that he does not think this will help her airway because the primary problem is the vocal cords. Then he added "Of course if it works I'm going to say I knew it all along." Funny guy.

Well whether or not it will help her airway is yet to be seen but it is agreed she needs to have them out and the surgery is scheduled for Sept. 28th. He also said he may do some lasering of the vocal cords if there seems to be anything that can be done without compromising her voice or lungs. It's no LTP but I'm still thrilled. So now lets just hope that a few weeks after she's recovered it will have done something positive for her. Then the doctor can say "I told you so!" and I won't care one bit.

Aug 9, 2009

Finally On Vacation

For most families summer vacation is about over but to me it feels like it just started. Ainsley attends school at a birth to three center for "school" 2 days a week. Thursday was her last day and I'm looking forward to the break. No more rushing around to get 3 kids fed and dressed in the morning, gathering all the medical gear and equipment. I've been frustrated at times throughout the year that for all the effort in getting there she often was more interested in watching the commotion than participating. But I really bring her for the therapies and look at the class time as a bonus.

But she had a really great day in the classroom Thursday. Perfect. Just in time for the last day of school. She's made a lot of progress in her therapies in these last couple months. I know her therapists are very proud as she is now testing developmentally at age 2 or above in some areas. She's come a long way since the days we first started therapy when she was only 4 months old. It's hard to believe that after break we will only be there 6 weeks before Ainsley moves on to big kid school 4 days a week through Seattle Public Schools.

Ainsley playing with the magnetic fishing puzzle during free play.

One of Ainsley's favorites: taking fishies for a swim in the bowl.

Bubbles: Oh the bubbles!

She's such a good cleaner-upper.

She's goin' for that button!

Standing to pop a bubble.

Getting that bus to the floor for "The Wheels on the Bus", no matter what!

She's always so good about putting away her dot at the end. She used to crawl with it and put it away. Now she can do it while she stands, with a little help. Big girl!

Aug 1, 2009

Blenderized Diet for G-Tube II - Using High Speed Blender

Like most moms I get a lot of satisfaction from feeding my children a nutritious well-balanced meal. For my two oldest children this isn't always possible since they have to actually EAT the food. But the one and only advantage to Ainsley having multiple medical issues is that I CAN actually feed her perfect nutrition via her g-tube. Now don't get me wrong, maybe it's not perfect perfect. After all, what in life is truly perfect? But it's close, especially when compared to what you can typically get the average 2 year old to eat. There is no struggling to get her to finish her meat, or eat her green leafy veggies. No arguing that watermelon is wonderful with a kid that swears the texture is icky. No begging for sweets. No surviving off goldfish crackers alone. No reminders to chew the food better.

Now I'm making it sound wonderful aren't I? It's not, but it is the silver lining in the looming cloud of feeding issues. Good nutrition is important. I would like to illustrate a point: What if I went to my typical son's pediatrician and told her he is a picky eater and I thought it would be better to switch his diet to Pediasure (or any other canned formula) just to be sure he was getting the right amount of nutrients? I highly doubt I could find a doctor anywhere that would agree that was a good decision (well maybe I could pay Michael Jackson's doctor to agree, but you know what I mean). Well I have to ask why then is this okay for g-tube fed children? Think about that a minute. Kids with g-tubes often have medical issues and need good nutrition even more than our typical kids. And no doctor would recommend a diet of formula for a typical kid. After all canned formula is just water, corn stuff, powdered milk, sugar, oil and vitamins. Logically it just doesn't make sense that it's the best choice for our tube-fed children either.

This is why I am an advocate for the blenderized diet for g-tubes. Doctors and dietitian's like canned formula for it's convenience and because they can know exactly the calories the child is getting. They are worried that we parents can't do this. I am here to tell you that making homemade blenderized formula does not have to be time consuming or difficult and you CAN do it. There are days that we are too busy and rely on the convenience of popping a can. But I take a lot of pride in the fact that Ainsley is getting good nutrition despite being physically unable to eat. You can see it in her glowing skin. She is healthy.

I don't want this to be too long but want to give a little history. After hearing about the blenderized diet from other parents and hearing about the many possible health benefits we tried it in Feb. 08. We too noticed an improvement in Ainsley's health and I was sold. I had started out using a stick blender and purees which worked fine but required making or buying purees. While this is a great way to start out, we knew we would eventually move toward a high speed blender.

I had heard that you have to have a Vitamix, but I'd never seen one. It seemed like an awfully large amount of money for a blender. I already had a good KitchenAid blender so I wasn't thrilled about spending $700 so I put it off. One day this past April Costco was having a special event with demonstrations of the Blendtec blenders. The man doing the demonstration made chicken tortilla soup in 3 minutes using raw vegetables, hot water and a chunk of cheese. I finally got it that THIS IS NOT REALLY A REGULAR BLENDER. The blender even heated the soup. I liked the idea that I could return it if it didn't work for making formula. Because I thought it might not be as good as the Vitamix. I actually preferred the way it looked and liked the fact that it's a bit shorter than the Vitamix so it can slide under a kitchen cabinet. Oh, ya, plus I liked that it was only $400 brand new.

Initially when I purchased the Blendtec I still use the same basic recipe. Then as I got comfortable I started to experiment with substituting one ingredient for another similar type of ingredient and therefore varied her diet. For example instead of rice cereal I might use about a cup of bread, cooked leftover rice or pasta. One day I even used left over curried tofu. For the meat I no longer use puree but add about 1/3 cup chicken breast that I simply buy already cooked from Trader Joe's, or a leftover. Some days I don't add carrots (I think they were turning her skin yellow) and use another vegetable instead. For the green vegetable I might use frozen peas or green beans, spinach, broccoli, zucchini or cucumber, even lettuce. I still almost always use a fresh banana because it's easy and provides natural sweetness. I still like to use applesauce for the same reason. But I also might cut up an apple instead. I still add oil and Poly-Vi-Sol vitamins with iron. The main thing is that the ratios remain the same. About the same quantity of starch, meat, green veggie, orange veggie, and fruit.

We still do an 8 oz water bolus in the morning (because the stomach is empty) and follow each of her 4 tube feedings with a 4oz water or milk bolus to make sure she gets enough free water. Doctors and dietitians like kids to get a prescribed amount of fluid. Just remember that we as adults are ideally supposed to drink 8 glasses of water a day. Does every adult you know do that? Does every child drink exactly a certain amount of fluids? There is range of fluid intake that works for all people. Watch your child for signs of dehydration and for weight gain/loss and adjust the blenderized diet accordingly. And if you are lucky enough to have a verbal child he/she can tell you when they feel full, hungry or thirsty. They can even help select foods for their formula. Work with your child's doctor and dietitian and you will win them over. Together you can safely feed your tube fed child real food.

After posting my previous blog post on the blenderized diet I've had a number of parents contact me, some who found me randomly through Google. I am excited to help people make this transition because I really believe in it. I hope that this video too will also help parents that are considering this change and the purchase of a high speed blender. Happy Tube Feeding!