One Week to Go!

I have been ticking off the days in my head until today. I cannot believe we leave in a week for Cincinnati! I am so excited to meet Dr. Cotton. I hope he will be able to figure out what is causing Ainsley's airway problems so they can either fix the problem or know what to expect. I have to trust that if he doesn't know then it really is a mystery that we'll just have to wait (and wait) and see. I don't like to wait, but then who does, really? I am full of hope but afraid to be hopeful. There have been too many times in the past.....Well, you know. She caught a wee bit of a cold that went from Steve, to Adrian, to her to me. I hope she's completely well soon so we can still go.

A Trach Child's Death

Most everyone knows that I get a ton of support from friends on the tracheostomy.com forum. Parents of children with trachs from all over the world are there day and night to lend support, give advice, listen and "get it" when no one else does. One of the moms just posted that her 3 year old son died in his sleep a week or so ago. He'd had the flu but no one thinks their child will die from the flu. It reminds me to be vigilent about using our oximeter and baby monitor and not letting her out of my sight in case the one time I leave her for a minute is the time she pulls the trach out. It's easy to relax when things are going well. Such is the fear of a parent of a child with a trach. He was scheduled to go in for an airway surgery in April. To come so far and be so close. It breaks my heart.

One Week Out of the Brace

Today its been a week since Ainsley got out of the brace. Already I see a big difference in the amount she is able to move. She is straightening her legs more and is even pulling them up under herself when she's on her stomach and it doesn't seem to hurt her like it did before. It's very encouraging that she is trying. Sometimes she arches her body and puts her arms and legs up in the air like an airplane. I think she's wanting to move and is starting to experiment with it. Sometimes we find her a few feet away when she's put on the floor but mostly it seems it's just because she's wiggling not that she's able to move with intention yet. She pulls her body forward when she's in the highchair. She's not yet sitting on her own as well as prior to the cast. I think it'll take a little bit of time to regain her balance. The cast and brace used to do a lot of the work for her. We use the brace during naps and at night. She seems to know that when I put the brace on that it means it's time to sleep. Sadly, when she's tired she gets excited when I put it on.

Moving to REAL food!

Doctors and nutrionists like formula. It's predictable. They calculate exactly how many calories your child needs according to their growth charts and mathematical formulas. There is no question about whether the patient is getting proper nutrition. If only it was that simple. I have several problems with this theory. First and most importantly being that formula is not food. It's convenient, for sure. But I can't help but think it is not good for the body. I can only imagine how I would feel if I switched to an all liquid diet like Slimfast. Sure I'd be getting the right calories, vitamins, protein and carbs. But would I be full of energy and vital health? I doubt it.

I'm also starting to question that Ainsley has to get the "perfect" amount of food. Since having a child with a feeding tube I've often thought wouldn't that be great if I could feed Adrian via tube to make sure he's getting exactly the nutrients and calories that he "should" for his age and height. Sounds silly doesn't it? All kids do not eat exactly the same amount of food. Nor do they have the same body type. Where Adrian is a somewhat picky eater, Evie is a parent's dream eater. I think they'll both be okay and neither will starve.

A huge problem is that when you're tube feeding a child you don't know when they are hungry or how much they want to eat. Perhaps this will resolve itself when Ainsley is able to communicate but until then it's trial and error. The issue is further compounded by the fact that she gets a lot of feeding at night which leaves her less hungry during the day. Until now I have been relying on nutrionist formulas and pumping in the amount they say she needs. But as time goes on I feel more brave and ready to take over the responsibility for Ainsley's "eating" and feed her like I would any other child. With food. And based on her cues about how much and when she wants to "eat".

On 2/21 I started mixing in quantities of rice cereal to thicken the Pediasure. I knew I would eventually be moving her toward real food. But my primary goal was to thicken the food. My hope was that it might help with vomiting and it did. About a week and a half later I noticed the quantities were less as well as the frequency. I had given her foods orally in the past (with limited success that's another story), and through the tube back in December but stopped when she got sick with a virus. So I decided to start the whole process over. I added a baby food one at a time for a few days like you would with a little baby, in addition to the rice. Alternating the foods at each "meal" like you would for any kid. On 3/17 I started including some frozen pureed chicken I'd made. On 3/20 I started making it into a formula for the day instead of one meal at a time. The formula included rice cereal, chicken, 4 vegetables, 2 fruits, essential fatty acids, liquid vitamins thined with Pediasure and blended very well with a stick blender until it was a consistency that would fit through the g-tube. Tody I started replacing the Pediasure with whole milk. I'm thrilled to say that she's tolerating it fine. For a few days she's been crying toward the end of her feeding. We presume because it's more filling than Pediasure and she's letting us know she's "done" sooner. So we've tried to decrease the size of the feedings and give more of them throughout the day. No doubt it will take some time to figure out what works for her.

I feel really good about this change. It feels great to know she's getting real food even if it is from a jar. She seems to have more energy. She's not vomiting as much which has helped decrease swelling in her airway. And since making this change her poop has gone from a disgusting mucousy mess to normal poop. The only down side is that it takes a fair amount more of my time. I'm hoping to eventually move toward making the food from fresh ingredients but for now this is okay. Eventually it would be great to get her off the night time drip and give her all her food during the day like you would for any child. But small steps.

One good thing about tube feeding your child. They eat lots of things they wouldn't necessarily normally eat at this age. So far the list of foods Ainsley's gotten through the tube:

peas
carrots
sweet potatoes
mixed veggies (includes spinich)
green beans
pumpkin pie (pumpkin with spices)
apples
pears
apples with blueberries
prunes
banana
peaches
chicken
refried beans
rice
oatmeal
milk
essential fatty acids (Omega 3, 6 & 9)
vitamins

Ainsley to Wear Brace Only While Sleeping

Today was a very exciting day! Of all Ainsley’s medical conditions surprisingly the most common one, hip dysplasia, has turned out to be close to the top of the list for most inconvenient. As you know in January I sent out an update saying we were so excited because Ainsley was getting out of the spica cast and getting a abduction brace instead. Little did we know it wasn’t as big of an improvement as we’d hoped. Diapering was still a nuisance because you’d have to get her out of the brace. Positioning was still an issue and her movement was very restricted the majority of the day. And clothing, oh I am so tired of seeing her wear the same dresses and baby legs. But at least she could have baths, a trach no-no but I’m all for bending the rules. Well today, she graduated to wearing the brace at night and naps only. Since she sleeps a fair amount it’s a good chunk of the day. But it’s a step in the right direction. We’ll do that for the next 6 months. That’s almost a whole year of dealing with hip issues. Sigh. So the x-ray today showed the hips in better alignment. Since she has small/shallow hips there is a risk of redislocation. They’ll do x-rays every 3 months to check placement. The best news is that after 4 ½ month she is now okayed for normal movement. Previously she’d been restricted to movements she could instigate herself so working on sitting, standing or crawling was not allowed. Her physical therapist is going to be very excited! It’s likely to take a little while for her to regain normal movement in her legs. Especially the one that had the open reduction. We’ve been doing water therapy and it’s helped a lot. She’s now able to move that leg a little and straighten it out more. The left leg is moving pretty much normally.

We have added an educational therapist and speech and language therapist to her team of care providers. She has made good progress with the educator. They’re working on offering choices and problem solving to give her a greater sense of control in her life. She’s had so many interventions in her short life that she’s learned to be rather passive. She is now indicating her preferences when offered choices between toys. She’s also started playing with toys like a ball toy where you reach up to put a ball in the top and push on a lever to release the ball. It looks like a giant gumball machine. The speech therapist has been working on trying to: teach her beginning language sounds like vowels, increase her receptive language vocabulary, general baby communication skills such as pointing and gesturing and also sign language. The therapist does have her wear her PMV (speaking valve) but she’s really not able to vocalize yet. Clearly there is a lot of catching up to do. In general all of it is still more challenging for her than for the average child. But she’s making slow steady progress.

Since recovering from RSV and a cold in February we’ve been encouraged by an increase of air movement through her mouth. I attribute that to a diet change that I started on Feb. 21st. I started thickening her food with rice cereal and baby food. It’s not nutritionist approved but WTH. I’m tired of waiting for the doctors to come up with solutions. So far it seems to be working great. Her weight has not suffered, she seems to have more energy and best of all the throwing up has finally improved and I think that is helping with the airway swelling. The way I see, the average child her age isn’t required to get “perfect” nutrition. So long as she’s growing as well and she’s getting a reasonable balance of foods I think she’ll be okay. And I make sure she gets enough fluids. She’s still on the Prevacid. Although it didn’t solve the problem in the past I will continue with it until after our trip so that there is no question about if it might have helped if we had continued to give it.

We are SO excited about our trip to see the world famous Dr. Cotton. We leave on my 40th birthday, April 6th, which is less than 3 weeks away! Navigating an airport with a baby with a trach was not what I thought I’d be doing on my 40th birthday but there was very little choice about which week. Really I’m okay with it. So we’ll let everyone know how things go if there are any major changes before then, but if not then I’ll update after the trip. Steve is going to be home with the kids and I’ll be traveling with Joanne, so not to worry, I won’t be alone.

Ainsley’s first taste of real freedom. She was having fun trying to look in the giant mirror.




Riding in the stroller, without the brace! Gotta watch it, her skinny behind almost fell out even though she was strapped in!



Finally freedom to move her legs in her car seat. Not that we go anywhere.

A Trach Mom's New Love

Several friends have been raving about the new Amazon Fresh grocery delivery service. Since Ainsley has the trach it's just too hard to go out. She needs such frequent suctioning it isn't safe to drive without another adult in the car especially because she vomits too. Since Steve gets home so late, by the time we eat dinner, grocery shopping is really hard....so I tried it and I have to say it's amazing! If you place the order by midnight it'll arrive on your doorstep in these locked totes before 6am! Can you believe that?! The only thing that would make it better is if they sold wine. Then I could really never leave the house. Ha, ha. It's in the trial phase so I really hope it's successful and stays around. It's been really great for getting baby food or diapers for Ainsley.