Weekly roundup

Kaia’s Aunty Karen recently bought Kaia this book. Kaia, in the last couple weeks, started pushing the buttons which motivated me to start looking into augmentative communication. We know that kids with her syndrome, in spite of having a limited vocal vocabulary, are often very successful at using complex augmentative communication systems. So, I spent the lion’s share of last Sunday and Monday trying to figure out if our early intervention program would cover augmentative communication devices. I finally discovered after much pestering of Kaia’s service coordinator that we could get her an augmentative communication evaluation. I’ve heard that if she does well and they think she may have the ability to be successful with a device, we may be able to borrow or rent different ones. Getting this evaluation, along with several experiences with our early intervention program over the past few months, cemented what I’ve been learning, which is this: no one will necessarily look out for your child or offer what may be incredibly helpful services for your child. You have to do your own research and advocate for what is best for your child.

Vital Stats – On Thursday, Kaia’s nutritionist/dietician made a visit and weighed and measured her. Kaia weighed in at 24 lbs 13 oz bare naked, and is 34 and ¾ inches tall. That’s an increase of 1 lb and 11 oz and 1 full inch since the dietician’s last visit Jan 16th! Kaia really is a tall, thin drink of water. But something is working! She’s gaining weight and height. We’ve recently discovered that Kaia loves Haagen Daaz ice cream (260 calories in one little serving container. She never eats the whole serving in one shot; it usually lasts a couple days).

We absolutely love Kaia’s speech therapist. In addition to all the speech and language play she does with Kaia. she also started a feeding therapy with her that is deceptively simple. She takes the pressure completely off of eating and does it outside of the highchair, using foods that I want Kaia to eat: crunchy/chewy snack stuff that she has to chew. It is a very positive experience for Kaia; any attempt made by her to mouth, lick and/or bite down merits lots of praise and clapping. We all participate and at the first sign of distress Kaia can put the offending food in an all-done container. It wastes a lot of food but it definitely is worth it. Kaia frequently prefers to try to feed us, but she will and loves to have me “kiss” her with the cracker/whatever in my mouth. This is actually how she initially started allowing these foods to come close to her mouth. She is now at a point where she even retracts her tongue and attempts to bite down on the food when I “kiss” her with it. It’s all very fun, there’s lot of smiling, giggling and chortling going on. Kaia was starting to chew this weekend while eating and I know that it is because of this type of activity.

On the respite front, we finally! selected a provider. We learned that the annual budget operates on a fiscal calendar from July 1st to Jun 30th which means that we have just over 3 months to use up our annual allotment of respite hours or lose them. I found a trusted old coworker who is willing to do all of the hours we have available. So, if we want, we can have two 4-hour evenings of respite each week until Jun 30th. While this is tremendously exciting, I’m a little nervous to be away from Kaia so much. However, I completely trust this person and that brings such peace of mind.

Speaking of respite, this past weekend we took Kaia to two Parent’s Nights Out programs in a row. The PNO we’ve been using through Easter Seals Crossroads expanded their program and parents can now bring their child two times a month. We also found a church that offers a quarterly PNO so we had Kaia attend that for the first time on Saturday. Both programs were great and seemed extremely well organized. I can not even say how great it was to be able to go out to eat and just talk. We rarely have time to do that – to just focus on each other. We really tried to follow some wonderful relationship advice and not discuss the child(ren), jobs, or money. Instead, we just focused on each other. It was so refreshing.

In other Kaia news: Kaia loves, loves, loves clapping and will now bring both pointer fingers to her face dimples area to initiate or imitate “when you’re happy and you know it” song. If we don’t clap for her when she is expecting it she will take both of our hands and bring them together to have us clap for her. I think this is also a revival of the game “close together, far apart” that we’d play with her while she was practicing balancing standing to get her to be able to move her arms to different positions and still keep her balance. She’s also kissing like crazy but does these open-mouth, drooling French kisses that we absolutely adore.

And, finally, probably the best part of the weekend for me: We Went Running! In my former life before Kaia, I ran. Hubby and I ran in half marathons and enjoyed the bonding and health benefits. After Kaia, I was determined to get back into running, and I fought valiantly for several months. I registered for the mini marathon in Indianapolis and tried and tried to train. At best, it was incredibly difficult to even complete a training run on the treadmill while Kaia was napping. One day it took 3 of her naps for me to complete my run. As Kaia got older, I didn’t want to strap her into a stroller, immobile, during the precious little time that she could be learning by moving her own body. I was expecting way too much from myself and it was stressing me out no end. Most days I was lucky to get a shower. I finally decided to accept that for the time being, running just wasn’t going to be a part of my life.

And now, a new chapter is beginning. For the past few weeks with the spurts of warmer weather, Paul and I have been saying that we should attempt a run and see how Kaia handled it. We went tonight and Kaia loved it! She pointed out and squealed at the deer in the park, laughed when I ran past the stroller, and enjoyed the music we listened to from the speaker on my cell phone. It was so great! My knees are a little stiff but I am finally starting to reconcile her need for movement with my own. I think a couple necessary things are happening: she’s started walking and I’m seeing the amazing progress she’s making with her gross motor skills. I know that having her in the stroller a few times a week while we run isn’t going to be the end of her progress. We still are very conscious of her need to move and made sure that when we finished our run, while we were stretching, she got out of the stroller and had the opportunity to walk around on the grass. She enjoyed all the antics of our stretching positions. Then, when we got home, we gave her more opportunities to push her toys and walk outside again. The other necessary thing, aided by the positive experience of our parent’s night out, is that I’m realizing we really do need to do things for us - that not everything can be about and be defined by what is best for Kaia. We are a family and our needs matter too. Part of me can’t even believe I’m saying that but I know that I need to take care of me too. My whole world is taking care of Kaia. Next comes my husband and his wants and needs, and last is me. It’s been too long. So, while I’m not signing up for the next half marathon yet, I am going to try to run a few times a week. Just for me.

The diet I'd like to have

I don’t know if every mom worries about how much their child eats but since the day Kaia was born I’ve been, I think you could accurately say, obsessed with how to maximize the calories that go in her body. Kids with her syndrome are usually described as “tall and thin”, but when we went to the biannual international conference for her syndrome last summer and saw some of the older kids, I wouldn’t hesitate to use the word emaciated to describe them. Feeding tubes, especially in infancy, are not uncommon. Throw in a diagnosis of dysphagia and cleft lip and palate, and it creates the perfect storm for a paranoid mother. While everyone – doctors, therapists, her nutritionist, and family members, recognizes that she is gaining weight and doing fine and concludes therefore that I’m worrying too much – I know otherwise. I know she is doing so well because of all the painstaking care I’ve gone to in making sure she gets the most bang for the buck calorie-wise. I’ve gone so far as letting breastmilk sit in the fridge for a day or two to allow the cream to rise, then skimmed the cream and added it to her other foods. I offer her at least 4 meals a day plus opportunities to nurse. If Kaia does end up needing more extreme nutritional intervention, it won’t be for a lack of my trying to avoid that. I know that a lot of you reading have kids who require tube feeds. I don’t doubt that you did everything you could to avoid that too. Sometimes no matter what you do a kid needs that extra help. I’d like to share a sampling of some of Kaia’s dietary staples, in hopes that another parent may find it helpful or even share some tips with me.

Kaia's ultra fattening (but healthy) mac-n-cheese

16 oz pasta (I use whole wheat Kroger brand salad rotini pasta)
1/2 c butter (the real stuff, unsalted)
1/3 c flour (I use whole wheat flour)
2 c whole milk
4 c shredded cheddar cheese (use the full-fat, no reduced fat here)
1 container 12 oz small curd cottage cheese 4% milkfat (the full fat stuff again)
2 lg eggs, beaten

Preheat oven to 350
Cook pasta, drain
Melt butter over low heat, whisk in flour for 1 min. Whisk in milk. Cook over med heat whisking constantly until misture is thickened and bubbly. Stir in cheese and remaining ingredients. Stir in pasta. Spoon mixture in large casserole baking dish. Bake at 350 for 30 minutes.

I double this recipe, then spoon into portions on wax paper and freeze it, then put in large gallon size ziplocs. I use two frozen chunks, mix in a vegetable like cooked chopped kale, microwave, and voila! instant lunch/dinner.

Other favorites:

Spaghetti - just whole wheat spagetti mixed with jarred spaghetti sauce and lots of whole milk ricotta cheese. She loves this stuff. It's high calorie and healthy.

I feed her half an egg yolk and about 1/8th an avocado every morning. I boil the eggs, let then cool in fridge, peel, cut in half, and freeze the egg yolks for Kaia. Paul & I eat the egg whites. Same principle for the avocado: I buy in bulk at Sam’s Club, and cut in 1/8ths when it's ripe and freeze the sections. That way it never turns brown.

Another great recipe but one that Kaia wasn’t too hot on so I’ve haven’t made it again: Cooked brown rice with coconut milk (I bought the coconut milk canned, the full fat version has 120 calories in 1/3 cup and 10 grams of fat!) and a little cinnamon and diced pineapples and oranges mixed in.

She also has liked the mini pancakes Kroger brand (they smell like chocolate chip cookies when heated) smeared with butter. I'm sure they're not ultra healthy but she has loved them in the past. Spreading almond butter on the pancakes is another great way to increase the protein and calories. I haven't introduced peanuts yet.

Grilled cheese sandwiches are super easy and relatively healthy if made with whole wheat bread. Just melt butter in pan, put in whole wheat bread slice topped with full-fat velveeta and again, instant meal! I tried regular cheese and she likes velveeta better.

Kaia does eat some of the foods we do – she’s had turkey and peas, sweet potatoes and meatballs, and fish from our dinners. I've given her other things that we eat too. I usually just try to add different types of cheeses or butter to increase the calories/fat content. Some of the morningstar farms frozen appetizers like portabello mushroom bites, or broccoli and cheddar bites are actually pretty high calorie too.

Oh, another one of her favorites in crab salad. You know, the fake crab meat stuff? I mix that with full fat cream cheese, real mayo, and real butter, and she loves it.

Kaia still has trouble with oral motor skills (chewing) so we fork mash just about everything. She can handle small pieces of banana or grilled cheese but she isn't really chewing yet - just mashing it around in her mouth. She recently started biting off crunchy bits of graham crackers so we’re hoping this means her oral motor skills are improving.

A disclaimer: we use whole wheat bread and grain products. I know some parents feed their kids a wheat-free, dairy-free diet (or gluten free, casein free, I’m not really sure what the difference is). Many of the kids with Kaia’s syndrome exhibit autistic-like traits and I know this is a popular intervention for autism. I looked into it but didn’t see any real hard data to support the drastic change that diet requires. If you know of anything different (valid scientific data supporting the diet), please let me know.

For those of you with kids who struggle to gain/maintain weight or have feeding issues, do you do anything else to encourage weight gain? Any favorite recipes or tips you’d like to share?