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.