Monday, December 17, 2007
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.
Thursday, December 6, 2007
Tuesday, December 4, 2007
Sunday, December 2, 2007
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...
Saturday, December 1, 2007
Wednesday, November 28, 2007
Tuesday, November 27, 2007
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!
Monday, November 26, 2007
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.
Wednesday, November 21, 2007
Monday, November 19, 2007
- 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.
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!
Saturday, November 17, 2007
Thursday, November 15, 2007
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.
Wednesday, November 14, 2007
"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.
Monday, November 12, 2007
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!
Tuesday, November 6, 2007
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.
Thursday, November 1, 2007
Wednesday, October 31, 2007
Monday, October 29, 2007
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.
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.
Saturday, October 27, 2007
Thursday, October 25, 2007
Wednesday, October 24, 2007
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!
Monday, October 22, 2007
- 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!
Wednesday, October 17, 2007
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!
Sunday, October 14, 2007
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!
Thursday, October 11, 2007
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.
Wednesday, October 10, 2007
Monday, October 1, 2007
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.
Friday, September 28, 2007
I'd hate to continue thinking these people are crazy if I'm just uninformed.
Tuesday, September 25, 2007
Saturday, September 22, 2007
Wednesday, September 19, 2007
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.
Preemie Magazine/Preemie Communications, Inc.
a. throwing everything away and buying all new toys
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.
Tuesday, September 18, 2007
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.
The hearing mother of a deaf child
Wednesday, September 12, 2007
Tuesday, September 11, 2007
Wednesday, September 5, 2007
Tuesday, September 4, 2007
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?
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.