Sleepy

Is it the vibrations?

Noah doesn't go to sleep with a special lovey or blankie. When he's tired he reaches for something electronic and musical. He lays down on it (with the speaker resting on his unimplanted ear) and plays the music over and over again until he drifts off. This is not how he goes to sleep for his regular naps/bedtime but it's an easy way to tell that he's sleepy. I just don't get why he's doing it. I mean as far as we know he has no meaningful hearing in that ear. Or does he? They could never get results for separate ears so I suppose it's possible that he's getting a little something. But even if his hearing was still at the same level as before the implant it would need to be a lot louder than one of those kiddie toys. Noah's unaided sound booth tests were always loud enough to cause me physical pain before he made any response. Is he feeling vibrations? It that normal for deaf kiddos? I just don't know.

Pictures!

We've had some picture issues lately. We left our camera charger in NY and didn't realize it until our battery was dead a week later. While waiting for that to ship we managed to "fix" our old camera enough to take pictures. That worked really well until we filled the card and realized that we have no way to read it at the house. Oops! In any case, we finally have our charger back from NY so here you go:

Noah went on his first field trip (to Chesterfield Berry Farm) on Tuesday.

We had Noah try on his Halloween costume, but he wouldn't stay still for a picture. This is the best we got.

This is Noah looking disgruntled after his head injury. It didn't really show up in pictures at first because it's right on his eyebrow (although I think you can tell a bit that it's swollen). Now that it's more blue than black it's a little easier to see.

Head injury, day 2.

Head injury, day 5.

And because I know you've all been dying to see it, here is where we moved all of Noah's toys when I got sick of them in the living room. I really like his new "big boy room", although I could do without the white walls. As soon as I finish my closet organization project that might just be next on the "to do" list.

The Deaf Community at Walmart

I know there is a reasonably well sized Deaf Community in the area I live. I haven't had much contact with them except for at Walmart. When Noah was little and had hearing aids people who were Deaf would regularly stop us in Walmart and fuss over Noah. They loved to sign at him. It was like the world was a better place because there was another deaf baby in it. They would ask me all about him (in ASL) and I would attempt to haltingly reply (ok, mostly fingerspelling, but we were able to communicate a bit). It always made me feel really good. It was ok that Noah was deaf. There are other people who are deaf that like Noah just the way he is. Yesterday I was at Walmart shopping with Noah and two women in the checkout line next to us were signing. Noah was quite interested in watching them - he loves to sign! I really think he would be quite fluent if it weren't for his vision problems and his language deficient mother. He's no longer the cute baby with the hearing aids, though, he's a toddler with a CI. All was good at first. They smiled and waved at Noah and he smiled right back and signed "bed" at them (it was naptime). But then he turned his head and they saw it - Noah has a cochlear implant. Suddenly the signing got really fast and the facial expressions got angry. The one woman pointed at Noah and signed cochlear implant and then a lot of stuff that was too quick for me to catch (assuming I knew the words anyway, which is unlikely). She texted someone on her phone and then a man came over and she signed CI again and pointed at Noah and he signed a bunch of stuff really fast. These people went from smiling and waving at my adorable little boy to angrily turning their backs whenever he would look at them. He's two, people! He doesn't understand that his mother made a controversial choice so that he could listen and speak. He doesn't know why you suddenly don't want to be friendly anymore. And you know what? You don't know that he couldn't sign a single word until he was able to speak with the CI. You don't know that he works really hard to learn ASL but that speech comes to him easily. I made the right decision, and I stand by it. I would be happy to explain my reasons if someone would ask me. Shunning a toddler is juvenile and cruel. If that's what the deaf community wants to teach my son I hope he stays far away from it. Where are all the kind deaf people? Maybe I should shop at Target instead.

Support, Head Injuries, and Window Shopping

Today I went to the first meeting of a newly created support group for families with special needs kids in my area. It was really neat to be around other parents who know what it's like to have a differently developing child. It was also interesting to see parents in the different stages of grief that I've been going through/have gone through. There was one mom with a 6 month old baby who was still in that initial diagnosis daze. It was obvious that she mentally got it, but hadn't emotionally come to grips with things. Then there was another mom dealing with the whole "why me?" and anger at her son's difficulties, and a third mom who (like me, I think) had moved onto accepting the diagnoses and working to find out how to best help her child (she's the one who started the group). It was very interesting to me to see the different approaches these parents had to their child's special needs, and also kind of cool that I could relate to everybody's response. It's not often (in the real world, anyway) that I find myself in a group of people who really get what my life is like. Everything went really well at the group until at the very last minute when Noah was tripped by another child and hit his head on a hard plastic toy. He didn't cry much, although his eyebrow immediately turned black & purple and swelled to 3 times its size. I think I would've worried less if he'd cried a river, but in any case I called my doctor and he said not to let him sleep for the next two hours (did I mention it was naptime?). Off to the mall we went for some lunch (daddy met us!) and window shopping/not sleeping. Noah was a trooper and happily shopped, taking only a short break to fill the cup holder and snack tray on his stroller with vomit. He fell asleep on the way home and woke only briefly when we came in the house. I've checked on him a few times and he seems to be ok. Head injuries are so frustrating to me because symptoms of concern (vomiting, dizziness/poor balance, slurred speech, etc) are all normal for Noah. How am I supposed to know if it's a concussion vomit or a reflux vomit? It's not like they come with labels.

Food

Noah was nice enough to fall asleep during Sesame Street so that I could attempt to write this post. Hopefully it'll last!


Smooth puree: Pureed completely using a blender. Has no texture or grit. Fruit may be added to starchy purees to help keep the texture smooth.

Gritty puree: Slight texture in a smooth puree. The texture is very small, but can be felt if the puree is rubbed between your fingers. The "textured pieces" are uniform in size and no larger than the size of cream of wheat pieces.

A smooth puree can be pretty much anything. Well, maybe not like a steak, but pretty much anything. We try to be creative with our combinationg so that Noah doesn't get sick of eating the same thing every day. A book that has good flavor combo ideas is "The Fresh Start Cworkbook" from So Easy Baby Food, although really you can just try things and see what works. Try to think of foods your child might want and then how to make it in a pureed form. Like for Halloween they can't eat a caramel apple, but they can eat some applesauce mixed with caremel flavored ice cream sauce. For Noah's birthday in May we blended a slice of cake with a small scoop of ice cream and he loved it! Another thing that adds flavor (and calories) is that we don't ever use water as the liquid in the blender. Juice, Pediasure, milk, some type of sauce, etc. Noah loves cream of wheat made with strawberry Pediasure, and baked apples with vanilla Pediasure is kind of like apple pie a la mode. V8 works great if your making a meat/veggie dish too (but only use a little if you're kiddo's on a low acid diet like Noah), and pretty much any kind of juice can add a kick of flavor to some boring food.
When we started with a smooth puree it was very thin, but over time things got gradually thicker. Thickness is a challenge for Noah because of his poor oral motor skills (he can't move it around in his mouth easily to swallow it) but Noah's more or less ok with it now. Some foods that are naturally thicker are puddings or pureed sweet potatoes, but anything can be made thick with a little Thick it! (or thinned with some extra liquid).
There are two different ways to make a gritty puree. You can puree your food in a food processor rather than a blender until there are still some teeny tiny chunks left. It takes a lot of trial and error to get this right, so I recommend the easy way. Use your food processor to chop up some plain bread crumbs or crushed cookies (we use vanilla wafers) until the pieces are soooo tiny. Yes, bread crumbs are already small, but not small enough. Add a tiny bit of this "grit" to a smooth puree. We started out with 1/4 teaspoon per 3 oz puree, and gradually got to now we do 2 teaspoons per 3 oz puree (it took us about 4 months to get there). Make sure you wait until they're totally confortable before adding more grit - it can take a while. I recommend starting with a thinner smooth puree (like a fruit) and gradually moving to thicker purees. If you try the food processor method, items that are a bit more firm will work the best. We've had good luck with peaches, mango, chicken & rice, and pasta dishes. The next step is finely chopped foods, which basically means the gritty pieces are a bit bigger, and I imagine that we'll start working on that in the next few months. After that you start getting into fork mashed foods, which require chewing so it could be years for us! Here are some of Noah's more favorite puree combinations:


cantelope and raspberries (cook the cantelope first!)

pancakes or waffles with any type of fruit

anything made by Glory Foods, a recent favorite is the smothered potatoes, but he's always loved their bakes apples and their squash - their veggies are great!

those flavored applesauces that Mott's makes

cake & icecream (see above)

chicken & dumplings or chicken & rice w/ veggies

cream of wheat (made w/flavored Pediasure instead of water)

pretty much any veggie of fruit combination (sorry, I've got to cut this short - Noah's starting to wake up!)

If you're just starting to puree table food, I recommend browsing the canned foods isle at the grocery store and just picking up whatever looks yummy. You can gradually start making your own as you get more comfortable with it. Also, when you make food for yourself evaluate whether you can puree it up for your kiddo. Get creative! Like I said, a steak won't work for a smooth puree, but a little piece of steak with a lot of ketchup or steak sauce would work for a gritty puree. Add some extra jelly, and a PB&J sandwich can be pureed too. Casseroles and soups are easy, as are most side dishes. And just because you think it's disgusting doesn't mean your child will. I thought pureed cake was so gross, but Noah loves it. If anybody comes up with some good flavor combos I would love to hear about it. I hope this helps, and feel free to ask a million questions. Eat, eat, eat, Hallie & James!

So many posts, so little time....

I have about 100 things that I want to write about, but I'm ridiculously busy this week. Here are some highlights.

• I'm going to be an Aunt! Uncle Mork and Aunt Mindy are expecting a baby in June. You can just call me Auntie Em - I'm sure everyone else will. I'm so excited for them, and yet it brings up a lot of memories for me. I hope I don't let my disappointment over my own pregnancy overshadow my joy for theirs.
• Noah is going on his first field trip tomorrow. He's going to the pumpkin patch with Chattering Children, the AV therapy center where he gets therapy each week. I'm excited, he's clueless.
• Our surgeon wants us to consider a second CI. My hubby seems really into the idea, but the idea of another surgery & hospital stay makes me cold with fear. We haven't talked to our audiologist or our speech therapist or anybody, so who knows. Maybe they'll change my mind or perhaps they'll change his.
• I am a "mentee". Our church set up a women's mentoring program and managed to coerce me into participating. My mentor's name in Almeda. She's a retired schoolteacher who babysits her grandkids during the day. I really like her a lot. Perhaps being a mentee isn't as bad as I thought it would be.
• My mom made Noah the cutest Elmo costume for Halloween. I really hope he's willing to wear it when the time comes, because it's about the best costume ever. Grandma's who sew are worth their weight in gold!
• We're doing a really cool new book for my Tuesday night Bible study. It's called "The Frazzled Female: Finding Peace in the Midst of Daily Life" by Cindi Wood. I highly recommend it for anyone feeling frazzled and in need of some peace.
• Noah is officially on the corrected charts for height now too (he made the weight charts at his last feeding clinic appointment). He weighs about 26 lbs and is about 32.5" tall. That's 5th percentile for height and between 10th and 25th for weight.
• Abby, I promise to write a post or e-mail you about the stages of purees that we've been through. I don't have time to do a thorough job right now.

Ok, I expect lots of comments because everyone should have something to talk about!

Feeding Therapy Update

The good news:
Noah can handle smooth pureed foods.
Noah can handle thick pureed foods.
Noah can handle gritty pureed foods.

The bad news:
Noah cannot handle thick gritty pureed foods (but we're working on it!).

Who knew there were so many steps to learning to eat!

Vomit

Noah had his third official "mostly vomit-free" day this week (Friday). He technically did have his stomach contents come up, but only tiny amounts that he managed to swallow back down. More like what most people think of as reflux. This is pretty much what the pattern has been:
first 4 months of life - very little vomit (but also very little taken by mouth)
next 18 months of life - frequent (4-6x/day, on a good day) vomit
next 6 months of life - regular (1-3x/day) vomit, except for 3 days (Woo hoo!)
I'm no statistician, but I think that at that rate of improvement he should stop vomiting eventually.
You might think I was jumping for joy all day Friday, but you'd be wrong. Vomit-free days scare me. You never know when it's gonna come, and it's bound to be a lot when it does come. I spent the day Friday coaxing Noah away from the TV, the bookcase, and the clean clothes I was folding. I dissuaded Noah from playing with anything not water safe, and I cringed everytime he tried to walk, climb, bounce, etc. By the end of the day I was exhausted! I hope when Noah stops vomiting for good he does it all at once. None of this one day every few months thing. It's too much stress!

Skeptical

Sometimes you come across people on the Internet and something about their story just doesn't add up. I've seen my fair share of "fake" preemie parents be exposed since becoming a parent to my own preemie, and people are always hurt. It's just such a terribly sick thing to do, and you have to wonder what that person's life is like in real life that they have to steal someone else's story or pictures in order to get attention. There have definitely been times when I've "tested" a potential faker by asking some prying questions, but one thing I would never do is accuse someone. I think back to when I was a new preemie mom - I didn't know the difference between PDA, TPN, and PVL. I'm sure if I had the time or energy for message boards I would've hopelessly muddled explanations of Noah's condition. Even when I first started posting on preemie groups I felt a little silly. Yup, deaf and blind. Seizures? Yeah, but no brain bleeds or noticeable damage on an MRI. No, he doesn't eat. Sepsis? Noah had that 6 times. I mean, who would believe that kind of stuff other than someone who's been through a similar situation?!? Bottom line if someone is a faker they're going to be exposed by someone other than me. I'm not willing to risk bringing more stress to an already overwhelmed preemie parent. They could be making it all up, but what if they are just trying their best to grasp an unexpected and traumatic situation? It's just not worth it to me.

My Vacation, by Noah

Our vacation was lots of fun! Mommy and daddy bought me new toys so that I wouldn't fuss during the 10 hour drive. They also let me watch movies in the car. I watched Signing Time about 100 times! When we got to NY I was alseep, but the next morning I discovered that we were at grandma and grandpa's house. Grandma and grandpa let me do lots of things like throw balls off the pool table and play in the cat's water. They think it's cute! They also have fun toys like the Sit and Spin and lots of pottery and artwork, although mommy wouldn't let me touch that. Grandpa got to brag to all the other music professors that I can sing in correct pitch. Everyone thought I was a musical genius because I've only been hearing with my CI for 6 months. Maybe I'll become the first deaf-blind voice major that Houghton's ever had!
The best part about western NY is that it's not hot and humid like at home. I wanted to play outside all the time. I'm not scared of stairs, sidewalks, or grass anymore so mommy had to keep a close watch on me. Daddy didn't watch me quite as close, but I only fell down the porch steps onto the gravel one time (don't worry the abrasions and bruises are almost gone!).
We got to visit lots of fun places in NY, like the Houghton campus, Letchworth State Park, and even Niagara Falls. At Niagara Falls I got to meet my preemie friend Jack. That was lots of fun. He's got a really cool stroller and I had to lean way over to look at the wheels go round and round. Mommy kept thinking she would run me into something, but I had the situation under control.
At Letchworth we went to an Arts & Crafts festival and then went to see the falls. We got to see the big balloons taking off! I got so excited that I threw up my lunch right in the grass, but nobody noticed since they were looking at the balloons and not me. On the walk to the falls Grandma helped me find a big germy stick. Everybody laughed when I swung it around like a sword and everybody but mommy laughed when I started to eat it. Mommy and Daddy wanted to take a family picture at the falls, but I wouldn't stay still. I was hoping they would drop me over the side so I could get a closer look at the waterfall, but they held on tight. Overall I had a great vacation, and I think Mommy and Daddy had fun too. They say they would move back to Houghton in a second if it weren't for feeding therapy and AVT in Richmond. I guess there aren't much of those things in Houghton. I tried to tell Mommy and Daddy and that I would be willing to give up my weekly therapy to spend all my time with grandma and grandpa, but they didn't think it was such a good idea.

Did you miss me?

We've just returned from a much needed vacation in the most wonderful place to be in the fall - western NY. We attended the inauguration of Houghton's newest president and the college's homecoming festivities. We also visited some gorgeous waterfalls, met another preemie family, and visited with my in-laws. All in just a long weekend! Sometimes what you need to get refocused is a little change of pace, and that was just what I got. I feel renewed, refreshed, and ready to take on my life again, which is good since I'm now playing catch-up for the days we were gone.

Delayed

Sometimes it's easy to forget that Noah is delayed in his gross motor skills and sometimes it's not so easy at all. Noah has always been delayed but when he started walking at 22 months it became a lot less noticable. Noah can walk; Noah's friends can walk. He must be caught up, right?
Today was our church picnic. Church picnics are great obstacle courses for toddlers. Take a bunch of people and put them on an uneven surface covered with rocks, roots, and leaves. Add obstacles like lawn chairs, coolers, and half full cups of lemonade and set the toddlers loose. I was pleased to notice that Noah was able to walk in the midst of all of this (without falling!). We've really been working on walking in uneven surfaces and avoiding obstacles in OT and if this was a final exam Noah definitely got an A in that area. But then I started to notice other things. I started noticing the 18 month olds who could run across the gravel and roots - all Noah could muster was a drunken walk. I notice the little guy that had just turned one walking up and down the steps into the picnic shelter with only one hand held. Noah can barely manage going up that way, and when going down he needs someone to hold both his hands and another person to guide his hips. I saw the little girl only a few month older than Noah eating an entire chicken drumstick (the one year old had one too, but his dad had to pull off small pieces of chicken). I would be happy to dissect the drumstick if Noah would eat it. He had pureed peaches and pears for lunch, which we fed him before we arrived so that our friends wouldn't be disturbed by the wretching and vomiting. Don't get me wrong, I am so thankful for the progress that Noah has made. We were told in the NICU to expect a chronic vegetative state, so I can't help but be amazed by him. I manage to avoid thinking about where he should be most of the time, but sometimes it's just there. Sometimes you can't help but noticing.