Friday, November 27, 2009

Feeding: We'll Get There Someday!


November 2008

video

November 2009

video

I look at these videos and think "Wow, he's made so much progress!". He really has worked hard this year. But then I remember that the difference between being able to take one bite semi-independently and taking 3 in a row with minimal prompting* takes no time at all for a normal kid, and happens a whole lot sooner than 4.5. Next year: chewing (I hope).

*minimal prompting for Noah = turning off the TV rather than a verbal cue.

Tuesday, November 17, 2009

November 17

Today is Prematurity Awareness Day.

Four years ago today Noah had recently been transferred to HSC Pediatric Center's "Preemie Express" unit. He was on one liter of O2, having recently graduated from Vapotherm, and a Kangaroo pump fed him through his NG tube at 10 CCs/hour. Noah screamed constantly due to his uncontrolled reflux and Methidone and Ativan weaning. He was only calm when I was able to drive the 3 hours each day to be with him. Noah's hearing loss had progressed to the point that the only sound he responded to was the loud, low beep of an unhappy monitor, and his exotropia and nystagmus made it nearly impossible for him to focus his eyes. Months of heavy ventilator tubing weighing him down left Noah unable to turn his head from side to side. Noah was nearly 6 months old, but the only time he had been out of a hospital was for 1 medflight and 1 ambulance ride.

Although some preemies have an easier time than Noah, prematurity is never easy.


November 17, 2005

Friday, October 30, 2009

Halloween Preparations

Today we were practicing our trick or treating behavior. Last year Noah gave all the candy back and some people were a bit offended. I was hoping to convince him this year to at least keep all of the candy in the bag until we got home. We've been practicing chewing his tri-chew dipped in melted chocolate in feeding therapy and he has licked a few chocolate bars, but he's never ever even considered putting an actual food object in his mouth. Much to my surprise after he had trick or treated a few times he pulled out a 3 musketeers and asked me to open it. Here is the result...





Maybe next year he'll actually consume the chocolate.

Tuesday, October 27, 2009

Sleep




When Noah came home from the NICU he slept 4 hours per 24 hour period, and not all at once. Three days later he was readmitted to the PICU and we were relieved to have a few days to catch up on sleep. Grandma saved us by getting an Amby hammock and things started to improve.



By the time Noah was a year old, he was sleeping about 12 hours per 24 hour period - a record. Unfortunately due to growth concerns we were still feeding Noah every 3 hours around the clock, so while he was getting more sleep, we really weren't (especially my saint of a husband who did the middle of the night feeds).




We were desperate and in need of sleep when Noah entered the intensive feeding program at Children's hospital. Slowly Noah came to a place where (with the help of Duocal and Polycal) he could consume enough calories during the day. It was so wonderful to finally after 2 years not have to wake our child to eat.





Things went ok for a while. Noah never slept as much as other kids his age, but he napped in the afternoons so I could get a break and would sleep 8 or 9 hours at night. Then he started school. Whether because of overstimulation or stress, some unknown allergen making his reflux worse, or just his age he started sleeping less, having trouble getting to sleep, and waking during the night.



When he finally gave up his daily nap last March things went from bad to worse. Some days Noah will sleep fine, but on others he's up for hours in the middle of the night. Screaming? No, not Noah. Singing. The first few times it was cute. Hearing my deaf child's sweet voice over the monitor was pretty great. But it's not so cute anymore.

I need a nap.

Friday, September 25, 2009

I pledge...

Is he not the most adorable little boy ever?!


video



I wanted to post this video for 2 reasons:



1. How cool is it that he memorized the Pledge of Allegiance?



2. Aren't kids so funny? He was trying to make a joke by saying "The United States of A-Noah". He was obviously quite pleased with himself over it. Where do they come up with this stuff?!

School revisited

Noah is finishing up his third week of school and things are actually going fairly well. So well, in fact, that I've had time to worry about next year.
Next year Noah will be in Kindergarten. Had he been full term we probably would've held him back a year since mid September is right on the border but he was born 16 weeks early.
As a reward for 7+ months of hospitalizations, a lack of vision, a lack of hearing, major fine and gross motor delays, virtually no feeding skills, and some pretty significant sensory issues we've decided to accellerate his schooling. It doesn't seem quite right to me, but neither does another year of preschool when he's ready academically for Kindergarten now.
Kindergarten is a whole different ball game than preschool. I've been looking at the Kindergarden SOLs for our state and I'm terrified. Absolutely scared out of my mind.
Because I think he can't learn the material? No, I know he can learn it. I'm terrified because I have to trust someone to effectively accomodate Noah's special needs so that he can access the information.
I visited Noah's mainstream class on Tuesday, and I was pleased with what I saw. He was doing the activity well and it actually wasn't as loud as I expected. They made sure Noah sat in the front for circle time, and they had his special scissors right there ready when they were doing a cutting activity. The table that he sat was at the edge of the classroom in a not overly visually stimulating part of the room, but not in such a way that he was isolated. While he didn't attempt to make small talk, the other kids did talk to him and try to include him in their group.
But then the teacher held up the paper so "everyone could see" as she gave the directions. Everyone except for the kid with no peripheral vision that is. According to his IEP he's supposed to get to manipulate all materials, which means he should've either had another copy of the paper to follow along with (ideally) or she should've held it down to reiterate her directions before or after she held it up. I have no doubt that it didn't even occur to her that it was a problem, and I have no doubt that the vision teacher will talk to her and she will always hand Noah his paper before she reads the directions from now on. But I can't always be there for every activity, and I can't think of every possible issue that could come up.
He missed the directions for an activity on Tuesday, but he already knew the information. There is so much in Kindergarten that he doesn't yet know, so missing out on even a small part of the instructional time is huge. He can learn if he can hear it and see it and stay on task and not get overwhelmed or distracted and if he has the background information to understand the concept, but those aren't exactly easy things to overcome. Scary. Terrifying. How many more years of this are there?

Tuesday, September 1, 2009

School

One week from today Noah will be going back to school. He is very excited, but I'm a little stressed about the whole thing. I'm not sure what a great placement would look like for Noah, but his current situation is ok. Not great, but adequate. I suspect that some of my concerns are just personality issues with his teacher. She's a wonderful teacher, but we don't always see eye to eye on things.
What I like about Noah's school:
1. vision services - this is the #1 reason that we don't want to change things. His vision teacher is awesome! She's also dual certified in O&M which is a huge plus in our book.
2. related services - PT & OT rocks! It would be nice to have a speech therapist familiar with deaf students, but I have no complaints about his current ST.

What I don't like about Noah's school (the abbreviated version):
1. Lack of communication. Perhaps I was spoiled by working at a private school that expected parental involvement, but it would be nice to know the date/time of class parties before they happened rather than after. The only time the school seems to want to talk to me is when Noah is misbehaving.
2. Discouraged interaction. I would love to be the room mom, to volunteer for things, help out, and get to know the teachers, students, and other parents. I definitely got a vibe that that was not encouraged. Heck, I was told parents weren't allowed in the classrooms at all (the principal mentioned the school's open door policy at an IEP meeting partway through the year or else I'd still think that).
3. Punishment for disabilities. This isn't an overall every day issue, but there have been times when Noah has been put in time out for "not listening" or "not looking". Ummm... yeah. Deaf-blind, anyone? I get that Noah can cause trouble when he wants to, but if he can't hear/see what you're doing he can't listen/look at things. It would just be nice if they verified that before they punish him.
4. Lack of hearing services. Noah's hearing services consist of a (wonderful, which is the only reason it works) teacher of the deaf talking on the phone to Noah's SPED teacher a few times a month. I really wish there was at the very least someone at the school building who could see him in class and point out that he can't hear the teacher when he sits next to the screaming autistic child. He had hearing goals last year, but they weren't worked on until the end because he didn't have direct hearing services and no one wanted to take responsibility for them. Hmmmm....

What I'm nervous about..
1. Noah has a new 1 on 1 aid that has not been trained on his feeding protocols (yet - that's Thursday) and as far as I know can't tell a cochlear implant from a bluetooth headset.
2. Swine flu. Ok, sickness in general. Noah is aversive to soap and I'm not sure that they're particularly keen on pushing the issue. His lungs held their own fairly well this past year, but that was only minor illnesses.
3.Social interaction. Noah loves other kids and he tries sooo hard to play with them, but he doesn't get it right very often. He does have friends, but not at school. He'll be in a regular classroom for part of the day this year, and I'm not sure how that's going to go.

Tuesday, August 25, 2009

Summer

Somehow I had the mistaken impression that when summer came things would slow down a bit and we'd have a nice break. Alas, summer is almost over and things are busier than ever. I find myself wondering how exactly we will fit 4 days of school into our already packed schedule.
Well as I posted in my last post we ended May with Noah's awesome birthday party at Chuck E. Cheese. He had a blast and it was the first time that I really saw him interacting with other kids without prompting. Most parents tell me that Chuck E. Cheese brings out the worst in their kids, but Noah's always been a little different.
June brought the end of the school year and an awesome vacation in Williamsburg. Noah absolutely loved the living history aspects of Historic Jamestowne, although he also enjoyed going to the pool each morning before breakfast, swinging at the playground with his cousin, and just generally hanging out with extended family.
July was busy with therapy. We had our drives to DC for AV therapy, drives to Richmond for feeding therapy, and ESY services on the other side of the county (OT, PT, Speech).
In August I actually got away for a bit, to the Low Incidence Disabilities conference at Penn State as well as a day workshop in Richmond dealing with kids & deafness. Grandma was happy to fly down for a few weeks with Noah, which made it much easier for me to get away. ESY was done, so we were down to just the AV therapy and feeding therapy, along with normal doctors appointments, mappings, etc.
For those of you who are thinking, "that's not so busy", don't forget that we have to spend 45 minutes 5 times a day working on feeding skills, one hour a day of "new ear" time plus additional set aside time working on localization and listening in noise, 30 minutes a day for handwriting/fine motor work, 20 minutes a day for Braille, 30 minutes a day for math skills, 30 minutes a day practicing balance skills/stair walking/etc., and now recently, sit with Noah at the potty for 10 minutes out of every hour. It reminds me of when Noah first came home from the NICU - after all of the required tasks are done, when are we supposed to sleep? In reality I don't spend all of that time on all of those things - who could? I just try to fit in some of each of those things into our daily routines (except for the potty, because not prioritizing that leads to puddles). Most of the therapists seem to understand, and the one that doesn't doesnt like me anyway so I tend to just tune out the lectures.
So, what have you been doing this summer?

Wednesday, June 3, 2009

Sad, take 2

I really do have happy things to post about, I promise. Field day and field trips and birthday parties... it's been a whirlwind of fun. But alas, again this evening I'm sad.

I'm sad for a family that has been through so much trauma who now have to go through more.

I'm sad for a sick little girl who is likely very confused right now.

I'm sad for a mother who felt her only solution was to harm her child.

I'm sad for those of us whose children are sick just because they're sick who might now face a little bit more suspicion or questions - maybe we're causing our kids' issues too.

So sad.

Saturday, May 30, 2009

Sad

Today is Noah's 4th birthday. I should be happy, right?

This has been a year of realization of just how far behind Noah is and will continue to be. In some areas he's right where he should be, or advanced (heck, he's starting to read!). He continues to exceed expectations in so many areas and works hard to lean new things that are easy for other kids. But there are so many things he can't do, so many things that he'll never do.

Today on his birthday I can't help but think that those things are my fault. He was perfectly content inside me, happy as a clam, and they took him out almost 16 weeks early to save MY life. With the exception of ONH all of his delays and disabilities are a direct reult of his premature birth.
When he wakes up I'm going to be happy and excited for his birthday and we're headed for the amusement park, but for now I'm just sad. It's just not fair that such a great kid should have so many obstacles in his little life.



And yet, look at how far he's come...



Wednesday, May 20, 2009

To Whom It May Concern (a vent)

To Whom It May Concern:
I'm sorry that changing Noah's CI batteries is an inconvenience at school. I'm sure that if you thought about it you'd realize how much more inconvenient it is for him to not be able to hear.

To Whom It May Concern:
If Noah was really able to intentionally throw a plastic lion at a classmate in order to hurt him, someone should notify the physical therapist. She has yet to have success with getting him to throw a ball with any type of aim - perhaps plastic lions would work better?
Punish Noah for throwing a toy, but don't assign malicious intent when none was meant.

To Whom It May Concern:
A few therapy appointments does not give you the right to tell a parent that they have royally screwed up their child's IEP. Please keep your opinion to yourself unless requested, particularly when it doesn't concern your area of expertise. It would certainly be nice if all OT appointments could take place in a mainstream classroom setting, but working on Noah's goal of removing his pants independently hardly seems like a group activity. Once you know me better feel free to berate me for being a bad advocate for my child, but you haven't earned that right yet.

To Whom It May Concern:
Jesus commands his disciples to preach the good news to everyone (Mark 16:15). That includes children with disabilities whether you like it or not. Meeting my child's spiritual needs is a mandate from God to his church. That doesn't mean that all Christians are called to that ministry, but it does mean that saying it's too much effort for little benefit or it takes resources away from the normal children is wrong. Get over it, because I'm not going away and neither is Noah.

Thursday, May 14, 2009

s-p-e-l-l-i-n-g (aka my kid's a genius)


Noah has for some time now been able to tell you the first letter sound of a word that he heard. He would spell his name "N-x-p-y-t-q-n-n-b" (or some other variation) because he knew that it started with the "n" sound and then had a bunch more letters. He's recently begun hearing more sounds in a word and is now pretty decent and getting most of the consonant sounds correct. Anyone care to guess what word he "spelled" in the picture?*
He also has quite an extensive sight word vocabulary. It's pretty impressive for an almost 4 year old, even if you don't take into account that the only print he has access to is 24 point font or larger (just the title in most books). He's also pretty good at guessing other words based on words he does know. So I did a little test with some refrigerator magnets, and here are some of the more interesting results. (the word-what Noah said)
just - jump
we-Wednesday
you-thank you
down-brown
up-SuperWhy
she-share
this-think
them-come
so-socks
like-bike
little-light
some-sorry
they-tree
be-bear
with-white
I didn't include any of the words he actually got right, which was basically any animal or color that I could think of plus the days of the week, months, etc. As a general rule if it's on the calendar at school, on any of his movies, or in the title of any of his books he knows it.
Since Noah loves spelling so much, yesterday for part of "new ear" time I got out scrabble and had him spell words that I said. He was so focused on finding the letters to spell that he didn't notice that he was listening. I might have to try that with the ling sounds too, since I'm always looking for new ways to trick him into repeating them.
* Hint: Noah's life revolves around his favorite activity, shopping.

Sunday, April 26, 2009

2 "ears" are better than 1

The official report from school is that Noah is actually holding conversations with them and responding to questions occasionally. He's had lots of issues with background noise in his classroom (don't even get me started on THAT situation) and he tended to keep to himself because, in my opinion, he didn't have a clue as to what was going on.
I got to see the improvement with two CIs first hand on Friday when I went to pick up Noah. He was able to hear his 1 on 1 saying goodbye to him and respond appropriately in spite of the facts that there were 2 classes of rowdy second graders in the hallway, he was facing away from her, and he was talking to someone else at the time. Wow!
He also seems to be doing well with just the new ear, although being the bad (read: busy) mom that I am, he hasn't been getting nearly the hour a day of new ear work that we had planned (closer to 30-45 minutes most days, and not at all yesterday). He's much more consistent about repeating the "s" sound from across the room than he was earlier in the week, has no problems answering questions about familiar books or topics, and seems to follow about 90% of conversation (only having trouble when I talk too fast or don't annunciate clearly). He is able to do all his ling sounds with background noise and although he still occasionally mixes up "oooooo" and "mmmmm" with each individual ear, he's getting them every time with the two ears together.
Overall I think he's a superstar and deserves some kind of award for his amazing brain-making-critical-connections abilities. I, on the other hand, am still a little overwhelmed at the have-to-keep-track-of-two-processors-that-aren't-interchangable-with-two-batteries-that-die-at-two-separate-times thing. Not to mention the get-less-sleep-and-do-less-housework-because-you-spend-all-day-Monday-going-to-Northern-VA-for-therapy thing. Maybe I should get an award too!?
I'd settle for a nap and a maid.

Saturday, April 18, 2009

Slow down, Noah!

Noah is moving way too fast for me with this new ear thing. I know that he's supposed to acclimate to this ear quicker than the old one, but not THIS quick. Our new AV therapist (the one we're starting with on Monday) said that for the first month or two we would be working on the "learning to listen" sounds from way back when. Getting him to turn to the "aaaaaaaAAAAA" sound, getting him to pick out the airplane from a group of toys when he hears it, etc.
So when we've been having new ear time (about 30 min./day right now), one of the things I've been doing (besides reading familiar books, singing songs, etc.) is I brought out all those old learning to listen toys. Day one when he picked the cow out when I said "moo" I was pretty impressed. Today not only was he hearing all of the learning to listen sounds, he was repeating them all correctly (no more robot talk - apparently we sound normal now). He was also able to answer simple questions about a familiar story after we read it ("What color is the fox?" - "orange", "Where was the rabbit sitting?" - "under the leaf", "What does a blue bird say?" - "tweet tweet").
I know he's not understanding things as well as with his other ear (obviously!) but he's picking up a whole lot more than I thought he'd be able to. Is that normal?

T Shirt

Those of you who know Noah know that he likes to make his presence known. One of Noah's favorite things to do is to sing boisterously while shopping. We get a lot of looks and a lot of comments. Most often I hear "What's wrong with him?" so I've come up with a helpful response:


Seriously people, there's nothing wrong with him. He just likes to sing. And it's not exactly polite to say "What's wrong with him?" He CAN hear you, you know. Has it ever occured to you that you might be the one with the problem? Just thinking out loud...

Friday, April 17, 2009

CI #2, day 3

Things continue to go well with Noah's new ear. He appears to be enjoying the extra sound he's getting very much. Yesterday at our second mapping he tested at 30-35 db in the sound booth and was able to repeat all the ling sounds. Yay! He does still think that we sound like robots when we talk if he only has the new ear on, but I imagine that will improve with time and therapy.
In the meantime he's trying to convince our cat that she should get some "new ears" from his CI surgeon. I guess he thinks she must be deaf too? She doesn't talk a whole lot, but she is a cat. I'm not so sure that cochlear implants would help with that.

Wednesday, April 15, 2009

2 Ears!


Noah's second activation went much like his first - a whole lot of silence. This time instead of crying he just insisted that he watch the Teletubbies. Just like the first time, he has acclimated very quickly to his new ear. We hadn't even left Richmond before he was begging for a trip to the mall to ride on Mr. Potato Head. He seemed fine with that, so we went out to dinner where he serenaded the other diners with songs from PBS Kids. By the time we finally got home he was trying to replace the headpiece when it popped off and telling anyone who would listen, "I like having both 2 ears!"

Wednesday, April 8, 2009

Noah+change=bad news

We learned today that:
1. our AV therapy center is closing in June and
2. they want Noah to see a different AV therapist for the next 2 months (his therapist was laid off in anticipation of the closing)

Last time we have to switch AV therapists it was a huge upheaval for Noah, and it was really rough for him at first. He loves that therapist now - he calls her his "gear friend" because she uses this gear toy to bribe him into repeating sounds.

Getting a new therapist along with a new ear and then losing that therapist after 2 months is such a bad idea on so many levels, so we're not gonna do it. (So there!) Instead, on Monday we're taking the lovely drive up to the Northern VA Chattering Children for a tour. If we think it's worth the (2 hours if there's no traffic) drive then we'll be starting up there as soon as possible. If we don't like it then I guess Noah's new ear habilitation is up to me.

I feel fairly confident at using AV principals at home. I mean the whole point is to indoctrinate parents so they live the AV lifestyle, right? It would be nice to have a bit of guidance, though. I guess in the long run it's better we just found out today, since I doubt we would've gone through with the bilateral surgery had we known a few weeks ago.

Any Advanced Bionics Experts out there?

The other day Noah was playing on the bed and his magnet came off. If it falls forward down his chest he is able to replace it himself, and that is just what he did, except that because he was rolling around it fell forward on the left side (the unactivated side). Here's the weird thing... his processor beeps if it doesn't make a connection, but it didn't beep. Something didn't look quite right but as I was doing other things (in and out of the room) it took me about 10 minutes to figure out what. He wasn't acting like he couldn't hear (if the cable comes loose or the battery dies he'll grab at it and take off/replace the magnet again and again as if hoping to reboot himself), but he also wasn't really responding to sound (I tried the ling 6 after I figured out the issue). So did he just activate himself? I called the audiologist and all they said was "don't worry". I'm not worried, just confused. What's up with that? Also, since that time I've caught him on 3 separate occasions trying to put his magnet on the other side. Anybody have any experience with something like that? I don't know whether he's just interested to learn that he has a magnet on both sides of his head, or if he's actually getting sound from it. But why didn't it beep?!

Sunday, April 5, 2009

TV test

It looks like this latest CI surgery definitely destroyed Noah's last bit of residual hearing. It used to be that if we turned the TV up to it's loudest volume he would turn around excited to watch his show. We tried this morning - nothing. Will it be worth it to replace that little bit of real sound with a whole lot of bionic sound? I sure hope so because there's no turning back now. I guess only time will tell.

Saturday, April 4, 2009

video

Bilateral

Well the surgery's done and things are starting to get back to normal. Noah once again had issues with vertigo, but this time he was too old to just stick in an exersaucer so I've been spending the last few weeks chasing him around the house to keep him from destroying his new ear before it even gets turned on. He's had some pretty good head bumps, but hopefully nothing that'll have any lasting impact! Activation day is a week from Wednesday so I guess we'll know then whether he's done any permanent damage to his "new ear".

Feeding Noah is miserable lately. Not surprisingly after two days of vomiting blood from the surgery and some extra nausea caused by the vertigo, eating was the last thing on Noah's mind. Noah's feeding therapist gave me a good pep talk this week, and I'm hanging in there, but it is definitely difficult right now. Some days I wish we just had a g-tube, but I don't know that that's the answer. I just wish I knew what the answer was!
I'll leave you with some surgery pictures and later I'll post a cute video of Noah telling me all about dinosaurs while we were playing at the botanical gardens.

Thursday, March 12, 2009

The Day is Almost Here!

This Tuesday is the big day! Noah is having his surgery for his "new ear". I'm so excited for what this is going to do for him, but I can't help but being stressed over the whole hospital thing. After fighting so hard to get Noah out of the hospital, giving him back doesn't exactly bring me warm fuzzies.
The surgery itself seems like it lasts forever, but the recovery last time was relatively quick. Noah will definitely be out of school next week, but will likely be fine to go back after that. Please keep us in your prayers this week!

Sunday, February 8, 2009

March for Babies

March of Dimes is not my favorite charity of all time. Sometimes their advertising annoys me. It seems to me that if all preemies turn out as well as the ones that they pick for ambassadors, why should we bother fighting prematurity? If all preemie moms are drug addicts who don't seek prenatal care, will more education about premature birth really help? If it's just a rough few months in the NICU and then life is normal, why bother?

So why do you now see a link to my March for Babies fundraising page on my blog?

Because all preemies don't turn out fine. Many of them, particularly the very early ones like Noah, end up with life long disabilities and March of Dimes wants to change that. They research treatments for things that can be debilitating for preemies like chronic lung disease, and they look for cures to many of the pregnancy complications that can cause babies to come earlier than they should. Lots of people think that if moms would just take better care of themselves, then premature birth would just disappear, but that's just not true. I wasn't a teen mother. I ate healthy foods, sought regular prenatal care, and didn't smoke or drink. And yet at 24 weeks I developed HELLP Syndrome and almost died.
But there's more. March of Dimes doesn't just try to stop premature birth, they also support families that are dealing with it. Noah started out at a wonderful local NICU where I felt loved and supported, but after two months he was transfered to a bigger regional NICU that could handle his surgical needs. I felt lost and alone. My support system was 3 hours away and I couldn't even figure out how to get to the hospital without turning around in a parking lot. Tthe family coordinator came to see me. She told me how to get to the hospital without getting lost, where to find the cafeteria, and invited me to a March of Dimes NICU Family Support event. Suddenly I wasn't alone anymore. The March of Dimes NICU Family Support program helped me get through that awful time when I was so alone.
So yes, the March of Dimes' approach sometimes really annoys me. When I see commercials on TV that tell me that if I would just get prenatal care my baby would be fat, healthy and normal I burn with anger at their insensitivity. But the fact is that both Noah and I would not have survived the NICU without them. And that it why I'm going to March for Babies.


Please donate to help me reach my goal! Click on the link in the sidebar to get to my donation page.

Wednesday, January 21, 2009

Bilateral Bionic Boy?

If you'd asked me two years ago when we were preparing for Noah's first CI surgery, I'd have told you that there was no way that I would ever be interested in getting him a second CI. Choosing to send my son to the OR for an "unnecessary" surgery once was more than enough for me. It either would work or it wouldn't, and at least we tried. And yet today I find myself wondering "Is it better to schedule the surgery for the earliest possible date (March) or should we try to get him in over spring break in April?". In my mind it's not a done deal until they actually preform the surgery, but it sure looks like Noah is going bilateral after all.

Tuesday, January 13, 2009

Periactin

Noah started Periactin on Thursday in an effort to increase his appetite and motivate him to eat. It appears thus far that it has the additional effects of keeping him from coughing, being congested, or vomiting. He took Periactin on Thursday and Friday with no vomit (two days in a row is a record!). We didn't give him any on Saturday or Sunday and he vomited both days, along with early Monday morning. Then we again started Periactin and no more vomit Monday or today (yes, that's right - almost 4 out of the last 6 days without any vomit). If this trend continues it could mean amazing things in terms of Noah feeling safe and comfortable around food, not to mention a huge decrease in laundry. Too bad he can't take it on the weekends.