Mar 31, 2009

Another Winner....Soy Sauce

We have another winner......Soy Sauce! She went back for multiple dips. Yea!

Standing Pretty Straight

Ainlsey is getting better and better and standing (with support). She wasn't too happy but look how straight she is?! Whohoo!

Mar 29, 2009

What's Next?...We have an answer.

This is fun!

Uh oh! I got caught!

Well when I said "Who knows what this girl will do next!" I didn't think it would be this. We use this shape sorter in the bathtub so I guess she figured if she wasn't going to get to take a bath she was going to problem solve a solution and find her own water. She found it!

Mar 27, 2009

Holy Cow She Ate A Chip!

Can you believe this? It was just this week we found she likes HP sauce and last night she ate a tortilla chip?! I've always said this girl likes to keep me guessing. Nothing ever makes any sense. Earlier in the day her speech therapist and I were working on feeding therapy at the snack table with the other kids and she wouldn't eat strawberry yogurt, pureed food, or even the HP sauce. Nothing. Then later that day she eats a CHIP?! WTH?

I know it's hard to tell from the video but this was totally voluntary. We always give her a plate of food at family dinner time but usually she just plays with it and gags and retches if any makes it's way into her mouth. This time she decided to pick up the chip and EAT it. Of course she kind of stopped as soon as I picked up the camera to record it but you can get an idea and see it's in her mouth and she's doing OKAY.

Who knows what this girl is going to do next!

Mar 25, 2009

Ewwh Gross! - Thick milk that's disgusting!

A mother will do a lot of disgusting things for the love of her child. It starts with childbirth and the parts people never tell you about that (I'll leave you to guess on that one), later there inevitably comes the time that you are vomited on, and then there are the poopy diaper accidents. At some point there is little that can shock the seasoned mom. Been there, done that, pretty much to every thing there is. I can add a few more unusual ones, picked dozens of stitches out of my kid's head, monitored the blood drainage in her drain after cranial surgery, blew regurgitated vomit back through a hole in my child's tummy so she wouldn't lose too much weight, inserted a tube into a hole in her neck (once a month minimum), had my face covered in coughed up trach secretions (i.e. snot), oh about 10,000 times. I could go on. But tonight in the effort to try to teach my child to drink milk I demonstrated how to suck thickened milk (see swallow study results from 2 weeks ago) from a sippy cup. Although the taste is pretty much the same I have to say there is something just really disgusting about thick milk.

Ah what a mom won't do......

Mar 24, 2009

A True Brit!

The road to eating has been long and torturous at times and we are only a short ways into our journey. We started feeding therapy when Ainsley was only a few months old. Desperate to teach our child the joy of eating we have tried just about everything and were shocked to find she didn't even like children's favorites like lollipops, ice cream, whip cream, pudding and the like. Still, I kept trying, despite making little progress even with the sweets. She didn't do any better with the savory either.

So imagine our surprise when after 2 years we finally discover the first food Ainsley truly LIKES.....HP sauce, a tangy and slightly spicy steak sauce that is very popular in England. Steve, whose family is from England declared with delight "She is a true brit!"

We gave it to her again tonight with great success. AND she even put a bit of scrambled egg in her mouth. Perhaps it had a hint of HP on it. Even though she didn't eat it I was amazed that she put it in her mouth. And last night she decided that she likes ranch dip even though she'd tried it before and didn't like it. Perhaps she is on the verge of discovering the delights of food. Wouldn't that be grand?!

Mar 20, 2009

Please Don't Stare

In Seattle there is a shortage of spaces in the better schools and we were lucky enough to apply at just the right time and get into one of the most popular schools. I wish I could say that all of the schools are equally good but they really aren't. Our children are fortunate to attend a really amazing school, one that really celebrates diversity. The student body is made up of rich poor and in between, children of all races, kids that speak English as a second language as well as native English speakers, kids from very typical houses with a mom and dad and two kids, as well as single parent families, gay and lesbian parents, foster kids. You get the picture. There are other things I love about the school but this is a big part of it. I grew up in a place and time when everyone at my school was white, middle class and came from a two parent family. I love the diversity that my kids' school celebrates. Our world is truly a beautiful place because we are not all the same in every way

Last night we attended Multi-cultural night at the school. The PTA funds a really great music teacher and he and the teachers select and teach each classroom a song and/or dance that represents a culture to perform on stage for the evening. My son, a Kindergartner, learned a Japanese dance. They wore happi coats and used fans in their dance. My daughter's grade sang a song about diversity in Spanish. There were African dances, a Chinese red ribbon dance, a rap song about us all being one and many other great numbers representing cultures from all over the world. Among the most impressive was a really cool number where they talked about immigration from different countries over the centuries and turned the flags from other countries into one big American flag.

So I was very disappointed to go and find that even at this school of all places that many many children (and a few adults) stared at Ainsley. Everywhere we go we get looks. I'm used to that. To some degree it's just human nature. But it doesn't take the sting out of being constantly reminded of her difference when we are just trying to go about living our life. Being in a room full of hundreds of people, and having 1/3 or more give looks, double takes, stares or even paying extra positive attention because of Ainsley's specialness was a bit overwhelming. Even when you're good and very practiced at ignoring people it's hard not to let that affect you.

We sat next to a really big aisle on the side because we wanted to have the stroller (she's not yet in a wheelchair). We have to have her bag with her spare trachs and supplies as well as her suction machine so it's actually more efficient to put it in the stroller than to set bags everywhere. Little did we know that was where the 3rd graders were going to line up during the show. Even though we moved a chair out of the way so she was in the space of one seat the kids were very close. And there was a group of them that wouldn't stop staring.

One girl in particular stood three feet away and stared at Ainsley during the entire show, with the exception of when she was on stage. She literally had her back turned to the stage and did not take her eyes of Ainsley for well over an hour. Needless to say it kind of spoiled things for us, it's hard to relax when someone is watching you like that. Luckily Ainsley was oblivious or we'd have said something right away.

We had a conversation about it with our kids when we got home just to make sure they know better. I want to ask, please, even if you think they already know, have a conversation with your children about why it's not polite to stare at people that look different. As they said last night in their final words we are all different and all the same, united together we can change the world.

Adrian's class dance.

Ainsley entertaining herself (note a starer in the background).

Evie's grade singing.

The flags of other countries from which immigrants came.

That makes up the United States.

The teachers performing the Hampster Dance. Hilarious!

Ainsley put her hands together at the end for her attempt at applause.

Mar 12, 2009

Airway Results from Laryngoscopy

Ainsely's vocal cord area. Still a bit swollen.

Suprastomal collapse around the trach.

Ainsley has been doing well since her Nissen Fundoplication in October 2008. Her upper airway around the false vocal cords had been completely swollen shut. Within weeks of the surgery we saw improvement when she was scoped in the otolaryngologist's office in November. Then again in January it was even a little better yet. She had been wearing her PMV (speaking valve-requires exhaling via mouth/nose) all day unless she was sleeping so our new otolaryngologist gave us a cap which covers the trach completely making the patient breath through the nose and mouth. Since January she has been able to wear it a few minutes at a time most days, which was encouraging.

So it was with contained excitement that we waited in the surgery waiting area today for the results of the laryngoscopy hoping for some information in the long saga of Ainsley's mysterious airway problems. Unfortunately there is no easy answer. The swelling, although better after the fundo, isn't completely gone. Since we don't know why it's there, we can't really do anything to treat it.

He says the vocal cords don't move real well likely due to scar tissue that built up from being intubated for 5 weeks when she was born. He could do a cricoid split surgery that would divide the cartilage but there is a chance that the scar tissue would reform and not really help. Plus there is a risk of causing aspiration problems with this surgery. So it's not a miracle solution. If we want to go that route he feels the swelling has decreased enough that there is room to do it with the laser and it could be done without an incision by going in with a scope. But since things have gotten better over the last few months he wants to wait 3 more months and then take another look before deciding.

He saw some suprastomal collapse at the trach insertion point. You can see in the pictures. He isn't worried he said because she still has room around it to breath. He may not be worried but I am concerned that to get the trach out it will require a LaryngoTracheoPlasty (LTP) where they repair the collapsed area of the trachea. There are many kids on the support forum whose children have required an LTP to get their trachs out for exactly this problem that is caused by the trach itself. Maybe he's not worried because she's not ready to get the trach out and this can be repaired and is a fairly common surgery in the trach world. I just hope not to go down that particular road.

The bigger problem is the obstruction at the vocal folds. He acknowledged that the ball is in his court at this point. Either he figures something out or we just wait and hope for a change. Those are the options.

Our very last ace in our pocket is Botox. She had her salivary glands injected with Botox today to reduce drooling and possibly aspiration of saliva. There is some small chance that aspiration of her own saliva could be contributing to the airway swelling. So now we wait and see if there is any improvement. We've already noticed that she is drooling less. If we start to see an improvement in the amount of time she can be capped then we'll know it is helping her airway. However I think it's wishful thinking that this will do anything but it's worth a shot.

So we wait. 3 more months. Please hope for all our sake that something changes in that time.

BAER Hearing Test Results

If you are a regular follower of Ainsley's blog you know we've been concerned about her hearing. Although when she was a few months old she had a normal hearing screening we started to have our doubts after 2 behavioral hearing tests were unable to be completed. I wanted answers, so we added a BAER test onto the schedule on a day she would already be sedated for a laryngoscopy. They hook electrodes up to the head and measure brain response to different frequencies. The fear was that, although she could clearly hear, some frequencies could be missing making language very difficult to understand. Although her language processing is quite delayed it is not because of this.


Mar 11, 2009

Orthopedic Follow Up

Ainsley had so much fun bouncing this light up eye ball.

We're pretty thrilled that she's learned to throw a ball.

The current x-ray of Ainsley's hips.

Wednesday we had an x-ray of Ainsley's hips to see if they are still in the hip sockets, followed by an appointment with her orthopedic surgeon. The x-ray seemed to show they were still in place at this time however he is concerned that the sockets themselves don't seem to be forming around the leg bone as much as he'd hoped. He is afraid they will slip out over time either partially and cause pain or fully and cause an unusual and difficult gait.

Since Ainsley was going under anesthesia the very next day he checked to see if he could add on an arthogram to the surgery schedule. He injected her hips with dye and then watched to see where that dye traveled when her legs were moved in different positions. Unfortunately her left hip shows some movement of the leg within the socket which is likely to lead to dislocation.

Regardless her hip sockets are too shallow to hold her legs into place. The hope was that after her last hip surgery, spica cast and hip brace that the leg bones being fixed into the sockets would prompt the sockets to form more deeply in response to the pressure. Unfortunately it didn't work.

The next step is a rather long surgery where they take bone from another part of the body (hopefully the pelvice) and use it to reconstruct hip sockets by cutting the existing hip apart and curving it downward. At the same time he would do a double osteotomy where he cuts and reshapes her thigh bones. After the operation she would be fitted into a hip cast for 6 weeks. After the cast came off she would be in a hip brace for another 6 weeks. It is expected that it would be 2 months before she could put pressure on her hips because of pain. And in all the surgery is likely to take 6 months for her to recover from developmentally. Meaning in addition to not making gains, it would likely take 6 months for her to simply be doing what she was prior to the surgery.

He said that if Ainsley were a typical child there is no question we would want to move forward with this surgery. But he doesn't want to put her through this if she isn't going to walk. The analogy he used is a car with wheels out of alignment. If your wheels are out of alignment and you bring the car out occasionally for 300 miles a year the tires will last forever but if you drive a lot miles per year the tires are going to wear out quickly and cause a big problem. So basically we have to try to figure out if she's going to be a regular driver or just your Sunday driver. I feel more than ever that she will walk on some level, even if it's with a walker just around the house. He says that even if that is the extent of her walking that it would be best for her hips to be in place.

Dr. Song likes to pay careful consideration to a disabled child's development when planning a surgery like this. He wants to see her back in 3 months to do another x-ray. We'll see how the hips look and what she is doing developmentally and then we will decide what the plan is. She's been doing so well I too hate to set her back by doing this surgery now but I also would hate to wait until she is walking and then have to immobilize her. The mostly likely timing would be this fall or next spring, taking care to avoid being in the hospital during cold and flu season due to her airway.

I was really saddened to know that the previous treatments didn't work and she went through all that for nothing. And now to be faced with yet another major surgery is very hard to stomach. Ainsley has been through SO much already and she is such a sweet natured child, it seems so unfair. It's very unlikely but I'm still holding out a small amount of hope that somehow, some way, things will have improved slightly by the next x-ray. Although that may just make the decision that much harder. I think we're still in a little bit of denial that this thing is really going to have to happen.

First Ever Emergency Trach Change

When you have a child with a tracheostomy you have to always be prepared for an emergency. Everywhere Ainsley goes we always have to have a suction machine to clear the airway of secretions, saline to help thin the secretions if needed, a spare trach in case something happens and another spare trach in a smaller size in case the regular size won't go in. In addition we always have a resuscitator bag and tanks of oxygen in the car. Of course we have all these same supplies at home.

In the two and half years of living with a trach we've had 1 911 call due to RSV and two accidental decannulations. Fortunately in both those situations the trach, while there was no longer a patent airway because the trach cannula was not in the trachea the cannula was still ever so slightly inside the neck, allowing it to be reinserted fairly easily. Never in this whole time have we used our spare trach. I was surprised that today was the day.

We headed with our nurse to Children's Hospital for the swallow study. Afterward we have a few hours before our next appointment so we head to the toy store to buy a jumbo 14' jump rope for Evie's school auction basket. As we are leaving I see in the rear view mirror that Ainsley is asleep. Her color is good but she is gasping for breath every few seconds. She sounds a little dry but not particularly junky. I get out of the car and suction her because I don't like the sound she's making. The suction catheter passes through the tube but it feels ever so slightly tighter. I use an entire saline bullet to help thin the secretions but there is still a slight whistle sound. Since the catheter passes we head back to the hospital for her orthopedic appointments.

The strange sound is still there and I still can't get it to go away no matter what I do. I realize that I'm going to have to change the trach. I get it out of the bag and lube it. I pull the trach and the nurse puts the new one in. I push the obturator (device for inserting a tube) through the cannula and out pops this sticky secretion that had been stuck inside the cannula. It has a very unusual consistency like half dried Elmer's glue. I washed the old trach in the bathroom just in case I needed it later (even a non-sterile trach is better than no trach in an emergency).

We proceeded to our appointments and all was fine. Later that night when I suctioned her I got another glue like plug stuck inside the suction catheter. After thinking it over I realized the next day it must have been some of that barium she'd aspirated was mixed in with her secretions causing it to form like glue.

Thankfully things were better the next day and I'm hoping it was a fluke. I'd come to feel pretty sure I wasn't ever really going to need those spare trachs I'd been carrying around so this was a good reminder why.

See the sticky stuff on my finger?

Videoflouroscopic Swallow Study

Not too happy.

Even with bubbles.

The x-ray video screen. The black is aspiration of thin liquid.

Ainsley's has always been protected from truly aspirating food and/or liquids because her upper airway was virtually swollen shut. Even with an ineffective swallow the food and liquid couldn't really go down the wrong way because the swelling stopped it. After her Nissen Fundoplication in Oct. 2008 the swelling of her airway started to decrease. In November when I put some blue dye in her foods, she coughed some after eating and I found a tinge of color in her trach secretions. I stopped trying to feed her regularly for fear the food or liquid would further damage her lungs, since she has been diagnosed with bronchiectasis. Lung health is nothing to mess with.

Over the following months I would periodically try the dye tests again and things looked okay. However since her airway opened up some she has been less interested in eating and drinking. This concerned me that perhaps the reason is that she is protecting her airway. So I had been anxiously waiting for today's VSS to know if it was safe to proceed with feeding.

Unfortunately Ainsley's greater degree of comprehension has made it more difficult to perform tests and procedures because she isn't as likely to simply go with the flow anymore. She was immediately very unhappy when placed in the seat in the radiology room. And when they moved the x-ray machine into place she really started crying. Why this scared her I don't know. We had our nurse blow bubbles while I attempted to feed her the different foods that were mixed with barium (the substance that makes the food show up on the x-ray) while the speech pathologists viewed the results on the screens. The fact that she was so unhappy really didn't help but we did manage to get enough swallows to perform the tests.

The findings were better than expected really. She did okay on nectar consistency (think melted milk shake) and thick (like baby food). But she did aspirated on thin liquids.

What all this means is that she is okay to proceed with trying to eat baby foods as much as she tolerates. There may be times she may tire quickly and only be able to safely eat a few bites or other times she may do well and eat much more.

Her liquids will have to be thickened with a powder or gel that we were given. The good thing is that she coughed afterward to get it up out of her lungs. Silent aspiration is worse because the food/liquids can just remain in the lungs.

They thought they could see no appreciable vallecular sinuses (they hold the food/liquid before it's swallowed). I was very concerned that there was an anatomical problem but at the laryngoscopy the next day the otolaryngologist said they were there.

So really that leaves us pretty much where we were before in regards to eating. I hope that perhaps her airway swelling will continue to get better and some of these swallowing issues may be helped by that. As with so much with Ainsley only time will tell.

Mar 10, 2009

Hugs and Kisses

First I apologize for being MIA. You all know I was planning Evie's Harry Potter birthday party. It was so fabulous that I decided to make a blog about it. I know many of you have been dying to hear about it so here it is: Now I just need to put the house back together. But that'll probably have to wait. This week is going to be a busy week. Ainsley has multiple doctor appointments and procedures. Most importantly a swallow study, hearing test and scope in the operating room. Think good thoughts. I'll post an update later in the week with the results.

Ainsley has been doing really well. There are a lot of things I'd love to post but for now I just want to post this big one. Over the past weeks I have seen evidence that she has started to understand a lot more. Sometimes it's hard to be sure but on Friday I asked her to give me a kiss and she leaned over and put her wet little mouth on my cheek. Then the following day she repeatedly gave Steve and I hugs and kisses when asked to do so. It is such a great feeling to have your child show their affection and the fact that she is understanding us is huge. Here's a picture Evie took for me.