P.S.

You might have noticed in my last post that I mentioned Noah "happily playing" in the church nursery. If you know us well you're probably scratching your head. Since when does Noah happily play in the nursery? That's the place where he screams, sobs, hold his breath, and cries 'til he vomits (not that it takes much). Apparently not anymore. It would seem that when the developmental books said that separation anxiety lasts until 2 1/2 they weren't kidding. Noah turned 30 months on November 30, and in the last few weeks a surprising change has happened. We first noticed that something was up at the Chattering Children Christmas party - he wasn't scared of Santa! Then at our Sunday School Christmas party he happily went into the basement to play with the teens hires to entertain the kiddos. When he didn't scream through his speech therapy session I knew something was up, and when he was unaffected by a change of room at feeding therapy I was hopeful. But it wasn't until he happily walked into church nursery this morning that I began to rejoice. Instead of starting to cry in the parking lot he was content to be carried, and when we reached the nursery doors he hopped down and went to play. When I said bye-bye the resulting "Mommy!" had me a bit worried, but he just ran up to me for a hug and a kiss and went right back to playing. This evening at the choir concert he didn't even look back for a hug. The boys were playing cars and he wasn't about to be left out. Somewhere when I wasn't looking my baby turned into a big boy.

What do you say...

...to one of the people who is responsible for saving your baby's life? I firmly believe that had Noah been born at the big, important NICU he was transfered to he wouldn't be alive today. What Noah's birth hospital lacked in pediatric specialists they more than made up for with dedicated, caring staff and the best in developmental care. Going to the NICU reunion last year was hard. What do you say to the nurses who fought by your side willing your son to live? What do you say to the neonatologists who sat by your child's bedside waiting for the inevitable, hoping that statistics would overlook one little boy?
Last night at church was the choir Christmas concert. Brian was singing and I was listening while Noah was happily playing in the nursery. After the concert I had Noah on my hip while talking to a friend. From behind me I hear "Noah? Is it really Noah?!" and turn around to find a familiar face - one of the NICU respiratory therapists, who's in-laws apparently attend my church. He was so excited to see Noah. He said that they still talk about him, which I knew since some of the nurses keep in touch. Our ped. lives next door to one of Noah's former primaries and I've given him permission to keep her updated on Noah's progress. This respiratory therapist wasn't Noah's main one, but he was around enough to get to know us well. He's a rather large man and I recall marvelling at how gentle he was with my tiny baby. Noh developed some pretty significant issues with tough the first time he went into septic shock and everyone walked on tiptoes around him. The respiratory therapists would hold Noah's hand and sing or talk* to him to keep his sats up while the nurse got a blood gas. When I saw this man I wanted to tell him how fondly I remember his part in the NICU. I wanted to thank him for his part in saving my son's life, because I know that it was the little things they did that kept him alive to keep fighting. When it came down to it, it was Noah that continued to fight when there was no medical reason left for him to be alive. But he wouldn't have had that chance if it weren't for the faithful, caring staff at that first NICU.

*Although this was likely around the time when his ears were damaged by the Gentamycin (his levels were way too high due to renal failure), he continued to respond to sound until about a month after this.

Thank You God

Like a good little Baptist Noah has been learning to say a prayer before he eats. Sometimes he's thankful for more than his food, though. I'm thankful for Signing Time, too.

Happy Birthday?

Today I'm celebrating the first anniversary of my 29th birthday. As if being 30 wasn't hard enough, today is also the 2nd anniversary of Noah's PICU admission. A lot of preemie moms seem to really struggle around their baby's birthdate, but I was too sick at that point to really remember much. What I do remember is the sheer terror of giving my baby back. I fought for 6 months to keep him, willing him to come home, and then 3 days later had to give him back. Not the greatest feeling. Hopefully we won't be inviting the ambulance crew to my party this year.

Walmart Strikes Again: Noah's Special Needs

I know, I know. I should shop at Target. When Noah stops drinking 120 cans of Pediasure a month I'll consider it. Until then I'm a Walmart shopper, but it doesn't mean I have to like it.
Today we needed Pediasure and Noah didn't look ready for a nap, so we decided to go as a family. Since we had coupons (thanks Kim!) my husband and I went through the line separately. When Brian was checking out the sales associate asked, "Is that one of them special needs kids?".
My husband, assuming he saw the CI said, "He's deaf, that was a cochlear implant that you saw."
The man said "No, besides that."
What exactly does that mean? I doubt they teach that at Walmart manners class. You're supposed to ask "Did you find everything you were looking for?" not "What are your kid's diagnoses?"
Part of me is paranoid now. Can you look at him and know he has special needs? Do I care if you can? Will he care?



Perhaps the sales associate just wasn't used to seeing happy toddlers at Walmart...

Two Years Ago Today

Two years ago today Noah sat in his stroller for the first time. (Yes, he really was that tight - gotta love EI!)

Two years ago today Mommy and Daddy got to take a picture with their son outside for the first time.

Two years ago today Noah got to ride in a car (he'd previously been in only a helicopter and an ambulance).

Two years ago today our son came home after more than 6 months in the NICU. He brought with him O2, an NG tube, a Kangaroo Pump, a Pulse Ox, an Apnea Monitor, an Ambu Bag (thankfully never needed!), a nebulizer, way too many medications, and a schedule not conducive to sleep. It didn't last long, but that's another story...

Bye Bye

Noah's feeding therapist is moving. Isn't there a law that the people who actually get your kid to eat have to stick around until they're eating normally? There should be! She's going to help transition him to his new therapist, but I can't help but feel like it's such a huge step back for Noah. We'll miss you!

Just say no?

I think I've mentioned previously that I'm leading a Bible Study called "The Frazzled Female: Finding Peace in the Midst of Daily Life". This week's study is entitled "I Don't Have Enough Time" and is all about time management and making God a priority and eliminating unnecessary resposibilities so that everything else falls into place. I'm really struggling with this and feel woefully inadequate to be a leader on this topic.
It's not that I don't strive to make God a priority in my life - I do. I don't always succeed, but it is one of my goals. But about the whole "eliminating unnecessary responsibilities" thing: exactly which of my responsibilities are unnecessary? Should I give up speech therapy? Maybe teaching my son to eat is optional? No, I know - laundry & dishes. I would love to give up housework! (Who am I kidding - my husband does more than his share already!) Perhaps I should eliminate some of the specialists' appointments. Pulmo? ENT? Optho? Who needs 'em!
Obviously the things that are overwhelming to me right now are not unnecessary responsibilities. Does that mean there's no hope for me to "find peace in the midst of daily life"? I sure hope not! I guess maybe it's just a little bit harder when the solution is not just saying no to bring that extra casserole to the church dinner or serving on one less committee.
Sometimes I wish my life were that easy, but then I realize that I would miss out on all the good things. Like the little boy running around my living room with a strainer on his head saying he's a "fider fider" (fire fighter) and pretending to put out the Pampers' box that's apparently on fire, for instance. I'd better go help!

I'm Sick of Sickness!

Noah is sick. Still? Again? The big debate is does Noah have one cold that's lasted 4 weeks or 4 one week colds back to back. The jury's still out. What we do know is that Noah now has his first sinus infection, but I'm actually ok with that.
There's kind of an infection hierarchy in my mind with sepsis being at the top and sinus infection at the bottom. I'll never forget the time that my son was in the PICU in respiratory distress, having seizures, with a raging UTI that the NICU was nice enough to "accidentally" send us home with (they called us first thing Monday morning - too bad he was rushed to the hospital by ambulance Sunday afternoon). Some obnoxious resident had the nerve to say "at least it's not sepsis". Yeah, thanks. It wasn't what I needed to hear at the time, but she was right. It was ridiculously difficult & scary being readmitted to the PICU 3 days after NICU discharge but that UTI and the 3 to follow (or was it just one long UTI?) were much easier than sepsis. Heck, he was only admitted for 2 out of the 4 infections and he wasn't revented at all. I felt like we breezed through them. Anyway, as easier as those UTIs were a sinus infection is that much easier still. His sats are good, he's eating & playing (and losing weight, but that's another story). What could be better? Hmmm... Perhaps better would be not sick. Yeah, that might be nice.

Happy Thanksgiving!

I'm thankful...

...that turkey, stuffing, and gravy can be pureed.

...that my family loves me enough that they won't mind when Noah throws up his pureed turkey all over the dining room.

...that we have a pulse ox, O2, and a nebulizer so we don't have to rush to the hospital everytime Noah is sick.

...that in the last year my son has learned to walk, talk, eat and sign (imagine what he'll do next year!).

...that I have a husband who loves me.

...for good doctors who take the time to listen.

...that I don't have to strain bananas to get out the seeds anymore.

...for feeding, speech, and occupational therapists who love Noah even when he's "being 2".

...for friends who understand my life and friends who don't have a clue but are willing to try.

...for a church family that continually prays for us.

...that Noah is finally on the charts for weight and height after 2 years of struggling.

...for vacation days when Brian and I can take Noah on adventures.

...that one of the local libraries has started the birth-2 story hour again.

...that I have time to post on my blog because my husband loves cuddling with his little boy at bedtime.

...that my son is nothing like what he looks like on paper.

...that this fragile baby

is turning into such a big boy.

What are you thankful for?

Tagged

Jennifer tagged me with a meme. Here it is:

• Share 7 random and/or weird facts about yourself.
• Tag 7 random people at the end of your post, and include links to their blogs.
• Let each person know that they’ve been tagged by leaving a comment on their blog.

1. I prefer to eat an odd number of foods. If we are eating at Chick-fil-a I will count out my 7 or 9 waffle fries and give the rest to Brian. I will eat an even number but if I have a choice I always choose odd.

2. I went to college in the middle of nowhere and sometimes it was hard to find something to do. Once my friends and I drew helicopter landing pads in sidewalk chalk all over campus in the middle of the night. No helicopters ever came as far as I know.

3. I don't eat foods in unnatural colors. In high school I organized a letter writing campaign to get rid of blue m&ms and bring back tan. Obviously I wasn't successful.

4. I don't have normal feeling in the tip of my tongue. It feels like when you hit your funny bone all the time (don't worry, you get used to it!). This is because when I had my wisdom teeth out they cut a nerve. I've regained a lot of the feeling but not all of it.

5. I have a number of nicknames. One of them is "Punk Holly Hobbie". You have to know me to understand.

6. In college I was proposed to more than once by boys I wasn't dating. They always seemed so confused when I said no. I was also dumped twice by the same boy whom I also never dated. My husband and I weren't dating for the first 3 years of our relationship. I think it must be a Houghton thing...

7. My big rebellion in high school involved wearing jeans to church. My parents pretended they weren't mad, but I knew they were. In college once I went to Niagara Falls instead of studying for a final exam (in my FIL's class - Shhhh! Don't tell!) - I felt so defiant but I still got an A in the class. I hope Noah gets his rebelliousness from me and not from his Daddy.

I will tag Lisa, Nathali, Heather, Jule Ann, Johnette, Liana, and Jessica. If you're already been tagged, sorry!

Potty Time?

We're thinking about starting to potty train. Noah tells us if he has a wet or dirty diaper and he has definite actions that indicate he is going. Thus far we've been putting him on the potty first thing in the morning and at bath time and he's gone a few times. Here's the problem: feeding therapy and speech therapy are both an hour away .That means that on two days each week we are out of the house for at least 3.5 hours, assuming it's not on a week where we have a doctor's appointment, occupational therapy, parent support group, etc.

I get the whole stop somewhere along the way thing, but is that really going to work on potty training day #2? I had planned on starting over Christmas break when we had almost 2 weeks with no therapy, but my in-laws changed that plan by throwing a fit that we weren't coming to see them. I really don't mind waiting to potty train, but we're trying to get Noah into the 3 year old class at Brian's school and if Noah's not potty trained that's not going to work. School is still 9 months away, but it took a year for Noah to accept his first bite of baby food, so I try not to assume that anything is going to be quick and easy.

I think the best option is to make my mother-in-law potty train Noah since she's the reason we won't be home, but I doubt she'll go for it.

ASL users - help!

Is there a sign for "waterfall"? Ever since our trip to NY last month Noah has been obsessed with waterfalls. In fact, last night he poured the cat's water dish all over the floor in imitation! He has been signing "water" while saying waterfall, but I'm wondering if there is a different or more specific sign for "waterfall" as opposed to "water". I checked "The Joy of Signing" which we have at home and tried googling it, but haven't been able to find anything. Thanks!

P.S. Is ASL users correct? ASL signers? ASL speakers? I wasn't sure how to correctly refer to a person who uses the language ASL.

The Deaf Community

Need an example of why hearing parents of deaf children don't want their children involved in the Deaf community? Here is a comment left on my blog by a Deaf adult who quite obviously disagrees with my parenting choices.

"LOL. I had to chuckle at this entry and comments, really.Nobody said anything to the hearing people who manipulated our lives in the long run. When we expel our opinions upon others, you whine?Actually, I believe that Deaf people were not sneering at the kid, they were RUDE at *you* because what you did was very selfish. "I want him to yowl like Mommy and Daddy!"That is the whole thing -- they were probably rude to the fact that you are selfish mother.R-Get a life.R-"

Hmmmm... name calling, rude comments. I don't want my son to be like you. Because you're deaf? No, because you are being nasty. In case you are wondering we started out signing with Noah as an infant and only chose a CI when after almost 2 years he didn't know any words or signs. In spite of the fact that it was recommended that we stop the signing when Noah was implanted we continued to sign so that he would be able to communicate with the Deaf community if he chose. In fact, Noah watches Signing Time videos to keep him occupied during his CI mappings. We didn't want Noah to see Deaf people at Walmart and not understand what they were doing - we wanted him to be able to communicate. Noah was not able to sign a single word until after he began speaking. His Optic Nerve Hypoplasia and Nystagmus made it so that that he was not able to make any sense of our hand movements until he connected the word that he heard with the sign that he saw. I don't recall ever thinking anything like "I want him to yowl like Mommy and Daddy". I'm pretty sure my decisions were made more based on access to communication and having a chance to make sense of his world. Sure, it's easier for me that he speaks my language but if he was only able to speak German then I'd just have to learn German, wouldn't I?

You know how I welcomed all the Deaf people in my last post and said I hoped you would stick around? I wasn't refering to people who were going to question my parenting choices or say that I was selfish. If I am so selfish, I think perhaps I might've given up on my little boy 2 years ago when he was fighting for his life in the NICU. When he was in septic shock the first time they told us that he would most likely be in a vegetative state and would certainly have some level of hearing loss. I was willing to accept my son no matter what. Yes, even if he was deaf.

The Deaf Community at Walmart, Part II

It seems that yesterday a number of Deaf people either came across my blog or at the very least my post about my experience with 3 ASL users at Walmart. Welcome! :-) Anybody want to babysit a deaf-blind toddler that throws up a lot? Just kidding, sort of. I've often thought it would be really cool to have a culturally Deaf babysitter for Noah so that he could experience some of that world as he was growing up, but I wouldn't pick a random person from the Internet just based on their comments on my blog. Anyway, I just wanted to welcome my Deaf readers and say that I hope you stick around. Here is another post I wrote about the Deaf Community and my frustrations about Deaf Awareness Day here is Noah's first Vlog where you can see some of his signs that he knows. In case you can't understand it, that sign he keeps doing over and over again is banana. He loves bananas!

How well do you know Noah? (A Quiz)

Some of the questions you can figure out, others you can guess, some are in old blog posts, and some you just have to know!

1. On what holiday was Noah born?
2. What was Noah's due date?
3. What was Noah's first word?
4. What was Noah's first sign?
5. How old was Noah when he began successfully eating pureed food?
6. What is Noah's favorite TV show?
7. What is Noah's favorite DVD series?
8. What color are Noah's teeth?
9. How long was Noah in the NICU?
10. How many times (since NICU discharge) has Noah been admitted to the hospital?
11. What is Noah's favorite letter?
12. What is Noah's middle name?

Leave your answers in the comment section. I'll announce the winner (and the correct answers) in a week, assuming anyone actually guesses!

Guess where we went yesterday?

One more hint...

Bathtime?

It's nice to be advanced at something...

"higher level thinking/talking/listening"

This is a note that our speech therapist made during our therapy session this week. People are always telling me that Noah is "so smart" or "so happy" and I typically ignore it. I mean, those are nice intangible comments that people make so that moms don't feel bad about their disabled kiddo.
"Sure he can't walk very well, but he's so smart" or
"I know he can't eat, but at least he's happy".
Higher level thinking/talking/listening is a bit more specific, though. During our session she commented that she is able to use more advanced language with him than with all of her other therapy kids of a similar age and that his auditory comprehension is amazing. I always get comments that he's doing well with the implant, but I guess I didn't realize he was doing THAT well. It's hard to believe that less than a year ago we would spend an entire session teaching Noah to notice the presence and absence of sounds.
"I hear that bell ringing!" "The bell stopped."
Now we have whole conversations with Noah.
"Put the farmer in the tractor, Noah."
"No. Pig tractor." (puts the pig in the tractor) "Vroom."
"Pigs can't drive tractors!"
"Ok. Horse." (removes the pig and puts the horse in the tractor, giggling because he knows that horses can't drive tractors either)
At home we're working on following two and three step directions and he really hasn't been doing well with it. Our therapist seems to think that he gets it but is just "being 2". I do agree with that to a point - he much prefers to do the opposite of what is asked (hence the pig & cow driving the tractor). I'm still going to keep working on it, though. I'd hate to find out she was wrong a year from now.

Halloween Memories

Noah spent his first Halloween in the NICU at Children's National Medical Center. He was finally making progress on the vapotherm at 5 months old, and they were trying valiently to kick us out (too bad our original hospital didn't want us back!). I loved his little Halloween sleeper. It was his first 0-3 outfit, and it was a too big, but he had an IV board on his arm so that was the only way to do it. He only wore it for about 5 minutes, though. He was still getting fevers of around 104 regularly so most of the evening hours were spent in just a diaper.Halloween #2 (17 months old) was right around the time that things started to look up for us. Noah had just come off of O2. He had just started to get steady in sitting and to crawl. He was starting to notice a few environmental sounds with his hearing aids. The exotropia was dealt with and he was beginning to focus and track with his eyes. What a difference a year makes! Halloween #3 (29 months) is here and Noah is no longer a baby. He can walk. He can talk. He can even eat (sort of). For the first time my little boy wanted a say in what he wore and where he wore it. He was not about to go inside when all the fun trick or treaters were outside. Everytime someone came to the house he would squeal in excitement and tell them "trick or treat" and then "bye-bye" and "see you later". We didn't end up taking him trick or treating anywhere, but I can't imagine him having more fun than he did waiting with his face pressed up against the glass of our storm door for the next kids to come by.

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.

Brain wave monitor?

Are there a number of small children going around wearing brain wave monitors that look like cochlear implants? I wasn't aware that such a thing existed. When Noah's brain waves were monitored they covered his head in a bunch of wires, sand, lemon juice, and gauze. A CI shaped monitor would've been so much easier! First there was the woman who very knowledgably pointed to Noah's CI and said "That's one of those brain wave monitors" to the general public in a doctor's waiting room. She started to explain all about it, but I missed out because we had to see the doctor. Later we met the "He can't come through the metal detector or his brain will stop" airport security gaurd. Today we met the "That's a cute monkey sticker on his brain wave monitor" woman at BJs check out. The best part was when I said "It's a cochlear implant. He's deaf" she nodded knowingly and said "That happened to a little girl at my church. She had to get tubes." Yeah. Ok. Seriously, though. Is there such a thing as a brain wave monitor that looks like this?

I'd hate to continue thinking these people are crazy if I'm just uninformed.

Because a little bit of Noah is never enough!

Notice that Noah is continuing to sign and say "baby" throughout the video. He really wants to play with his baby (doll) rather than read a book, but daddy just doesn't get it (or else chooses to ignore it).

Pulmonology

Today at our pulmo appointment the amazing nurse practitioner Molli was being followed by a medical student. She proudly announced that she had the medical student read Noah's entire medical history and case file because he was such an interesting case. The medical student just gave a very weary half smile (in case you didn't know, Noah's medical history and case file consist of boxes full of paperwork and numerous CDs of x-rays, MRIs, ultrasounds, etc.). Poor medical student! She got to help with the history today and asked informed (although niave) questions such as "Has he been to the audiologist recently?", "Are his teeth still green?" and "Will you be continuing in feeding therapy?". I like most medical students. I have much more patience for them than residents who should at least have a bit of a clue about things. In any case Molli (and the medical student) have deemed Noah's lungs "beautiful" and Molli decided not to increase us to twice a day Pulmocort for the winter as was the original plan because he's doing so well. Here's hoping Noah's lungs stay beautiful until spring!

First Blog Video

My adorable little boy is showing off some of the words and signs that he knows. If it works, that is.

Happy Hearing Birthday, Baby Michael!

Noah was almost a year old when he got his first hearing aids. Fortunately little Michael got his much younger. We hope you enjoy learning to listen!!

So Sad

Dear Preemie Magazine Readers:
Preemie Communications, Inc., the parent company of Preemie Magazine, regrets to inform you that the company has officially shut down and is undergoing bankruptcy proceedings. This is an unfortunate outcome for such a promising community, but a necessary one due to the inability to attract new owners/investors to cover expenses and debts. The company is truly saddened by this turn of events, but would like to thank all our readers and supporters for helping us fulfill our mission in educating so many parents and professionals in the preemie community over the last two years.
Respectfully,
Preemie Magazine/Preemie Communications, Inc.

You know you need a vacation when...

You know you need a vacation when your child vomits his entire breakfast in the toy box and you consider:
a. throwing everything away and buying all new toys
and
b. pretending you don't notice until your husband gets home from work 7 hours later
until you choose
c. dump the whole thing in the bathtub and turn on the shower (if it's not washable it's not worth saving anyway)

Only 2 weeks and 6 hours until we leave for Houghton! I'm going to go here and here and maybe even here.

A Letter to the Deaf Community

Dear Deaf Community,
My son is deaf, I'm not. I chose to have him implanted with a cochlear implant at 21 months old because I wanted him to be able to communicate through spoken language. I don't hate the Deaf culture or want to keep my son from his deaf identity. In fact, I spend a good deal of time trying to find opportunities to learn more about Deaf culture. I've exposed my son to sign language from infancy and he is able to sign a few words. He's by no means fluent in sign, nor am I. He has significantly more spoken English than signs. You see, my son is also visually impaired. Does that make him less deaf? Deaf Awareness Week is fast approaching and I would like to take my son to some Deaf Awareness activities. When I look at various sites I find silent suppers. I can sign eat and so can Noah. We also know banana, cereal, thank you, and more. Does that mean we can come? Or will I be shunned because I don't know enough sign language? Will my son be shunned because of the magnet in his head? I think that it would be a beautiful thing to go to a Deaf theater production. Would I be lost because I can't sign enough? Would people glare at me if I spoke to my husband during intermission? I have also read about protests planned at places that support Auditory Verbal Therapy or AG Bell. My son goes to AVT every Monday. If I protest in front of his therapy center will that make me a better parent of a deaf child? Will it help my son to better understand what it means to be deaf? You see, my son will always be deaf. Even with a cochlear implant and spoken language. You understand what that is like, I don't. I wish that the Deaf community would embrace hearing parents of deaf children. I want someone to help me explain to my son that it's ok to be different. He might believe you because you know what it's like to be different too. Unfortunately all too often I find the Deaf community judgemental of hearing parents. We're bad parents because we want our children to hear and speak. Is that an unfair statement? Is it wrong to want my son to be like me? You teach your hearing children to sign, don't you? I don't want my son to be unkind to people who make different choices than what he would make. Does he have to be like that to fit in with Deaf culture? Please help me to understand.
Sincerely,
The hearing mother of a deaf child

I win!

or not?


What do you think?

I was just kidding about the duct tape!

There was a time last year when so many things were attached to my child that I was known to comment that it would just be easier if I wrapped him in duct tape each morning so that I wouldn't have to reattatch the cannula, leads, pulse ox probe, eye patch, and hearing aids again and again. I never actually resorted to duct tape, although as you may or may not be able to see in the picture a little extra medical tape went a long way in keeping the eye patch where it belonged. We went to the opthamologist today, and I think I may have to start thinking about duct tape again. It looks like Noah will need glasses. Glasses will not help Noah's ONH & nystagmus, but they will help his worsening nearsightedness. We're waiting for now, but Dr. W. said to expect them at the next appointment (in 9 months) and if not then, certainly at some point before he starts kindergarten. That means I have 9 months to find a solution to keeping a cochlear implant and a pair of glasses attached to my son. At the same time. Without interfering with each other. Duct tape is looking really good!

Disappointment

Story Hour for the 0-2 crowd is discontinued this year at our local library. I've been waiting 2 years for Noah to be healthy enough/less likely to vomit for story hour and now they've cancelled it.

Noah's first two year molar finally broke through the skin, as evidenced by a hole with a lovely green tint showing through. I was really hoping that his 2 year molars would be completely white. Now I'll have to wait 5-7 years to find out if his adult teeth are casualties to his preemie experience too.

We brush them, I promise.

I never thought this day would come....

As of today's weekly weigh in, Noah is officially on the charts for his actual age. That's right, not his corrected age, his actual age. Wow!

Good Mommy Award

A few months ago I wrote this post about a time that I was a bad mommy. In general I would say I'm not a bad mother. In fact, there have certainly been times where I should get a special commendation for going above and beyond what most mommys have to do. Not that the rest of you wouldn't do it, mind you (and some of you have). Anyway, here are some of the top contenders for my "Good Mommy Award".

1. I almost died so my son could have a better chance at life. Typically iminent liver faulure is a reason to deliver ASAP, but I held on long enough to get a full round of steroid shots.

Don't those lungs look healthy to you? Just think how bad they would've been!

2. I drove 2 hours each way every day to visit my son in the NICU for the last 4 months of his hospital stay. For the first 2 months he was only 40 minutes away, but even that deserves an award.

3. I chose an outfit for Noah to be buried in when he was 2 months old. We were told he would not live and we had come to grips with that. I think sometimes the most loving thing you can do is being willing to let go.

4. I've "helped" with things that would make most people more than a little uncomfortable. I've held my son's head still so his vent could be retaped, his PICC line could be retaped.... pretty much anything that his devious little hands could reach I've held him still or taped it down. I've watched retinal exams and my son's hernias being reduced. I held the C-PAP on for an hour when my son was extubated the first time because it didn't fit right and kept falling off.


5. I stick a magnet to Noah's head numerous times a day. He pulls it right back off again, but I just do it again (and I rarely complain about it).

5. I learned how to insert an ng tube. I did it more than once even though it made me cry afterwards each time. I did it because having Noah home was more important than my comfort zone.

Can you blame me for using all that tape?

6. I've spent the last 2 winters stuck in my house to keep my little guy from getting sick.

7. I picked out 4 different "coming home" outfits for my son. Ok, so that was fun. But each time he came home meant he had been back in the hospital again - that wasn't so much fun.
I'm kind of partial to #2.

8. Every day I say "take your bite" at least a million times. I clean up vomit 1-2 times a day (sometimes more, but never less). It will be years before my son eats normally, but I haven't given up.

Ok, so what do you think? Is my award in the mail? All too often I think moms (preemie moms especially) focus on the few thinks they think they've done wrong rather than all the things they do right. So lets hear it. I want to know why all the rest of you deserve "Good Mommy Awards"!