He's not nearly the expert that he seems in this video. The most he's done at home at any one meal is 6 bites independently, and those require coaching. But we now know he can do it, so it's definitely something we'll be working on once I get him to eat again.
Tuesday, December 23, 2008
Monday, December 8, 2008
Friday, November 7, 2008
Monday, October 20, 2008
At our meeting we also talked about assistive technology. They've ordered the Mangold Braille series and a Mountbatten Brailler for Noah, and we discussed many of the other options/ideas available. They wanted to give Noah one of those pager things that you get at a restaurant to hold in his lap at circle time or whenever so that they could page him when it was his turn to speak. I vetoed that idea. A little boy holding a lighted vibrating "toy" isn't going to eagerly listen while awaiting his turn, he's going to play with the toy. Silly people!
In Teacher of the Deaf news the school will be videotaping Noah and sending the tape to her so hopefully that'll help. I just don't see how it's possible to adequately serve a child who you've never met at all, let alone seen in a classroom setting. I'm definitely going to be pushing for some new or different services at our next IEP. It's just not working for me. (Although I'd be willing to stand corrected if this video tape thing works...)
Friday, October 17, 2008
Tuesday, September 30, 2008
Friday, September 26, 2008
Unfortunately he hasn't learned what letters go together to make up words yet. He sure likes to practice, though! There's a future spelling bee champ in there somewhere.
Thursday, September 25, 2008
When I was 24 weeks pregnant I got the "flu" or so the on call OB assured me (who gets the flu in May?). After 2 days of dealing with the "flu" with almost constant pain, headaches and vomiting I went to camp out at the OBs office to get some answers. While when I first arrived they assured me that I indeed had the flu, a urine sample and a BP check later I was in L&D triage getting labs drawn and meeting with the perinatalogist.
The first time I went back for my yearly GYN appontment they put me in the same room where I went that day and by the time the doctor arrived I was a sobbing fool. The nurse thought I was crazy, but the doctor understood and just patted my knee soothingly until I calmed down. I was sooo happy when the practice finally moved to a much needed larger space - in another building.
Since that time I've done my best to avoid that building. I have my lab work done at the office on the far side of town rather that set foot in that building and deal with the memories. Too bad the only surgeon that my doctor recommends is in that same place...
One of these days I'll deal with my emotional issues surrounding Noah's birth. Years from now I'll look back and laugh and that awful feeling that I get in the pit of my stomach every time the phone rings, and maybe someday I'll stop running in alarm to his room whenever he sleeps later than I expect. For now I guess I'll just be grateful that I have a wonderful husband who answers the phone, checks that Noah is breathing before he leaves for work, and goes with me to appointments in that dreaded place. I might be crazy, but at least I'm loved.
Monday, September 22, 2008
2. Either Noah is super smart or his teacher is amazing. Probably both. He's currently a calendar expert and quite the meteorologist. The other day he was at the playground and the sun was glaring down at him. He looked at me and said, "Mommy, I need a cloud."
3. Pulmocort does make Noah vomit more than normal. Flovent doesn't. We really like Flovent.
4. Everyone at school has been absolutely wonderful, and for that we are so grateful. Unfortunately the HI teacher has yet to show up at school. I'm sure she'll be great too, if we ever see her. I'm going through appropriate channels and trying to be assertive but not nasty. We'll see how long that lasts.
5. Noah thinks our house in a jungle gym and is currently scaling the entertainment center in search of an elusive movie case that he thinks I've hidden on top. I actually have it with me, but that probably won't keep him from breaking his neck.
Sunday, September 14, 2008
Noah celebrated the day by getting pulmonary hypertension and being revented.
I hate it when people tell me that God doesn't give you more than you can handle. He sure gave me more than my share! I've had my bitter days, but over time I've come to realize that He gave me more than I can handle for good reason. I'm one of those people who likes to handle everything myself. Since I'm in over my head I have to rely on Him.
Life would sure be different if Noah had been born today, but I'm not so sure it would be better.
Happy Unbirthday, sweet boy!
Friday, September 12, 2008
Noah and Mr. Cane have been together for 3 days and already Noah can hold Mr. Cane on his own. Sometimes Mr. Cane gets stuck on something and ends up behind Noah and then he gets confused but we're working on it. Noah also doesn't tap much, but Miss Karen says Noah probably won't be a tapper since he has some vision. Mr. Cane will mainly help him with depth perception and identify him as visually impaired so he doesn't get beat up if he runs into someone.
Noah really likes Mr. Cane. Today when we were leaving school Mr. Cane made a loud noise when he hit the metal doorframe by the step to outside. Noah looked at Mr. Cane, said "It's a step." and walked down with no prompting. Thanks for your help, Mr. Cane. Mommy feels much better knowing that you'll be with Noah when she's not there.
Sunday, September 7, 2008
- Noah cries all day at school and anytime at home that he thinks about school.
- Noah's stress is making his eating a challenge again.
- The word church makes Noah start sobbing.
- I will probably be needing surgery sometime in the next few months.
- As far as I can tell they don't make large print preschool Sunday School materials.
- Whenever we're in the car Noah cries and begs us not to take him to school/church.
- Pulmocort apparently makes Noah's reflux worse.
- Noah has a new AV therapist and his AVT center just moved to a new building. The only reason this hasn't led to sobbing is that he doesn't know yet.
Saturday, September 6, 2008
Newsflash: Noah has some vision and a cochlear implant. Those things really help. And as for the days of the week, I have to blame Rachel Coleman and her catchy songs. I never even tried to teach him that, he just knew it one day.
Thursday, September 4, 2008
Wednesday, September 3, 2008
- walk the halls with your one on one aid
- ask for Mommy a lot
- have a productive 30 minutes of O&M Training walking around the parking lot looking at the different colored cars
- refuse to eat lunch
- fall asleep 15 minutes before Mommy comes
"I want to read a book at school today."
That was what Noah said to me as he was eating breakfast.
That was what Noah said to his teacher when he got to the classroom this morning.
...And then he realized that Mommy wasn't staying.
We'd been trying to explain for weeks that Mommy would go home and Noah would stay at school, but he just couldn't fathom why I wouldn't want to be at a place as great as school.
When I was walking out of the building I saw him walking down the hall with his one on one, wailing and screaming to anyone who would listen, "I want Mommy to go to school too!"
Thursday, August 21, 2008
Tuesday, August 19, 2008
Saturday, July 26, 2008
Wednesday, July 23, 2008
Tuesday, July 22, 2008
The best part is that the proceeds go to benefit an organization for families of deaf-blind kids like Noah. So if anyone is going to be in the Norfolk/Virginia Beach area on August 12 come check out a fun event and support a great cause.
Saturday, July 12, 2008
Friday, July 11, 2008
your child is 29.5 pounds, and that is at the 22nd percentile for weight.
your child is 35.5 inches, and that is at the 6th percentile for height.
Saturday, July 5, 2008
Days in 2008 so far: 187
Vomit free days: 1
If he doesn't vomit from now until next year, almost half of 2008 will be vomit free! A girl can hope, right?
Sunday, June 29, 2008
Monday, June 16, 2008
Noah doesn't do some of the 1st year things - he's never been interested in imitating sounds in isolation, and as our audiologist will tell you, he's become quite good at not making any visible response when he hears sound. Fortunately his language skills make it clear that he can actually hear the Ling 6, even if he won't repeat them or drop a block in a bucket. What surprised me was the things he was doing that aren't in the first year's expectations. He has met all of the year 2 and 3 goals and about half of the ones for year 4. Apparently retelling an entire story from memory is a 4th year goal - who knew!
I really am amazed and proud at how Noah has taken off with his CI. Noah's speech is not just age appropriate for his actual age, it's advanced. And he's only been hearing since March of last year! He is picking up language incidentally as well, if not better, than his hearing peers. Wow! In light of this new information, we're starting to phase out AV Therapy. We'll be switching from weekly to every other week starting in July. There's a lot of important language development that happens in the next few years and we don't want Noah to get behind but at this point he doesn't need teaching so much as monitoring. Way to go, Noah!
If only he would learn how to eat...
Saturday, June 14, 2008
Tuesday, June 3, 2008
Friday, May 30, 2008
On Friday Noah and I were at the mall when a man came up to us and shoved a paper in my hand. It said something like "I'm Deaf and I support myself by selling these ASL fingerspelling cards. Please give as much money as you can." I make it a rule not to hand out money to strangers unless I know what it'll be used for so I didn't buy his paper but it led to an interesting conversation. He eventually noticed that Noah responded to my signs close to Noah's face and not his 4-6 feet away. When he realized that Noah was deaf-blind he went away feeling sorry for him. I was struck that the seemingly intelligent and mentally stable adult supporting himself by begging for sales at the mall deserved more pity than my son. I don't know what Noah will accomplish, but it certainly won't be that.
Today we spent part of the afternoon at Noah's favorite place: King's Dominion (or as he calls it "Queen Dominion"). The difference today was that it was Deaf and Hard of Hearing Awareness Day. I was certainly aware of a lot of people that were using ASL, although I was disappointed that there weren't any other CI users (that I saw) or any information about oral language or CIs at the information tables set up. Maybe they should call it Deaf Cultural Awareness Day instead? I was afraid that Noah might be harassed by someone who is anti-CI (surely there was one person there somewhere!) but he was nice enough to cover himself from head to toe in vomit shortly after we arrived and overconfident mommy didn't bring an extra harness so he was CI free for most of our time. He switched easily to ASL, though (I assume because there were so many other people using it), so it didn't have a negative impact on his day. I had wanted to go to one of the interpreted show performances, but a rather nasty thunderstorm found us huddling in the build-a-bear store and we were about done for the day after that.
I'm intruiged by deaf adults. I try not to stare, but I'm sure sometimes I do - I want to take in as much as I can. We get a lot of stares too, and I don't mind. I know everyone's just jealous that I have the cutest sweetest 3 year old ever.
Tuesday, May 20, 2008
Tuesday, May 6, 2008
Sorry this is so dark. It's too sweet not to post!
Noah: I want to say the prayer.
Daddy: Yeah, say the prayer. Ok.
Noah: Now I lay me down to sleep.
Now I lay me down to sleep.
Now I lay me down to sleep.
I do this one?
Now I lay me down to sleep-away.
Now I lay me down to sleep. I pray the Lord. Lord my soul to keep. Thank you God for Mommy and Daddy. Amen.
Saturday, May 3, 2008
He went to bed at a really nice time but had a huge vomit in his sleep at 9:30. This involved changing his bed, cleaning the floor, giving another bath, and refeeding dinner, all while he was screaming at the top of his lungs. Noah always falls asleep to his Xoponex but since he didn't need another dose we tried a saline neb. It didn't work. We're still up and he's not acting remotely tired.
Too bad crying-it-out would lead to a repeat of the 9:30 vomit or else I would seriously consider changing my parenting views.
Thursday, May 1, 2008
- Noah knows when he is going and has a very predictable peeing/pooping schedule
- he doesn't mind sitting on the potty chair a million times a day to "try"
- the predictable schedule involves him going 10 minutes after every meal
- peeing outside of a diaper makes Noah vomit (especially if it lands on his feet)
- Mommy's not ready for potty training. Ask me again in a year or two.
Saturday, April 26, 2008
He didn't talk.
We tried to interact with him. He knows a lot of signs now if you do them close to his face so he can see.
He just moped.
When we got home we got him a fresh battery and he went back to singing and smiling and non-stop talking/signing. It's days like today that make me realize the CI was the right choice.
I haven't had any free time since May 2005 when they stuck my in a hospital bed, hooked me up to the mag, and told me to lay on my left side and not move. Ok, I guess technically that was free time. But I wasn't allowed TV, the phone, visitors, or sitting up, and the triple vision from the mag didn't help if I tried to read a book so it wasn't exactly relaxing.
Recently, (think: yesterday) we received notice that Noah's Medicaid has been reinstated. Wahoo!! We got in through a waiver program for disabled people. In addition to Medicaid we've also qualified for at least 10 hours a week of attendant care for Noah and 720 hours of respite a year to be used however we like. I really can't remember what one does with free time. Grocery shopping? Cutting the lawn? I used to have free time, I know I did. It's just been too long...
Thursday, April 24, 2008
Today she wanted to work on "proprioceptive" activities. All well and good, until she wants me to squish him with pillows. Ummmm... yeah. Do you want to see what he had for lunch today? And then when he gagged because the piece of playdough he was rolling picked up a cat hair (thus changing the texture) she wondered aloud how it was possible that a kid could be both sensory seeking and sensory aversive. I don't know. He just is. Beverly understood.
Why am I doing this again?!Maybe I should be like Kathie Snow and just cancel all the therapy. Or maybe my therapists shouldn't get pregnant so as to take maternity leave right before my son transitions (Are you listening, Beverly?). That's the ideal solution, really. Oh, and they shouldn't move to Austria, either (I'm talking to you, Jamie Sue!). Seriously - you'd think Noah would be more of a priority in their lives.
Monday, April 21, 2008
I've started making nasty comments about women and their cute little take home babies.*
I keep pulling out all the NICU pictures and:
- falling in love all over again
- marveling that the OG tube was so close to the size of his fingers and the leads covered almost his whole chest
I alternate between telling myself that it wasn't that bad/was worth it and wondering what I did to deserve the hell that we've been through.
Has it really been almost three years?
* To all of my friends who have recently had full term babies or are planning on it in the next month I promise to be happy for you starting sometime in June.