Baby Charlie's Adventure

The Preschool Search

2012-01-25T19:54:00.000-05:00

Ugh ugh ugh.
I am not enjoying this preschool search "situation."

Let's start from the beginning. Charlie has been followed by early intervention since 6 months old. At age 3, the school system takes over on providing services. We haven't had him tested...yet, but I think we will, even though our service coordinator doesn't think we'll qualify (since Charlie is doing so well.) Don't get me started on the fact that the public school preschool class is 5 days a week and could possibly involve riding a school bus. (If we qualify and decide to go this route, I believe we'd only do it if I drove him, and we had an IEP written for less days than 5.

So we're looking at "normal" preschools. Here are my specifications: 1. a three year old class, with just three year olds, not older kids as well, 2. two days a week, 3. no lunch. I do not think he needs to go three or more times a week at this age or worry about lunch (not yet!). I'm worried about him being able to eat lunch in kindergarten, and that's years away!

At the same time, I think he'd really enjoy a little class, and it would be good for him to spend some time away from me, otherwise I'd probably just wait a year. Plus, he's been going to the EI "preschool class" since he was 18 months old with me, and I'm sure he'll miss it when he's too old for it.

So my criteria is already knocking out a bunch. More than one either serve lunch as part of the day, and/or are three days week! Or, are full already! Seriously people, it's January. I'm looking at schools for September.

The one I visited, I had pretty high hopes about and while it was perfectly nice, I was shocked at the ratio of 16 3-year old kids to 2 teachers. Essentially, I hoped I'd love it, and I didn't love it. The director was very accommodating with the "eating issues," and said we'd work together on what to do for snack time. Most likely it will be me sending in a snack that Charlie is familiar with and will possibly want to eat as opposed to what they serve, which he'll probably not want.

So the search continues.

So much talking

2012-01-21T08:07:00.000-05:00

We had an appointment with GI this week, and Charlie weighed 23 1/3 pounds and was 32 1/2 inches tall (both showing some growth from our last visit). We are starting Charlie on a periactin, which acts as an appetite stimulant. This has been suggested a few times over the last year, but we've never done anything. When I found out about Charlie possibly having Russell Silver Syndrome, I joined the Magic Foundation and got this incredible book about everything you possibly could want to know about RSS. It includes pages on the topic of periactin and how to administer it. So I brought it with me, thank goodness. The doc first suggested giving it once a day at night because it can cause drowsiness, exactly the opposite of what the Magic book suggests. So I showed him the book and we are going to give a dose before breakfast and before dinner, hopefully making him "hungry" for those meals (instead of being hungry when we put him to bed with one dose at bedtime!) I was glad he was willing to listen to my knowledge, but I was bummed that he didn't seem to know what I knew.

Some things I've been meaning to mention:
1. We've turned a corner and now Charlie is afraid of talking to strangers in public. Previously, I could say "Charlie can you wave and say hi?" and he'd do it. Now, he's putting his head on my shoulder or closing his eyes and pretends to be ASLEEP so he doesn't have to talk to strangers. It's really hilarious because it's obvious he's not asleep, but just pretending. The other day I had just given him a piece of cheese at the grocery store and some lady said hi to him. So he's chewing cheese at the same time pretending to be asleep with his eyes closed. ;)

2. A new favorite activity is "racing." He says, ready, get set, go!" and then runs through the kitchen and dining room into the living room. He always seems to win the race, and sometimes there is a home run at the end. He also likes to set up his toys to watch the race.

3. Yesterday he seemed to discover how to say "I like" and he was walking around "practicing" saying what he liked. "I like Mama." " I like Mickey Mouse." "I like outside."

4. Last night he spent about an hour and a half singing to himself after I put him to bed. He sang " I've been working railroad. All live long day!" (Unfortunately he doesn't know any more of that song.)

Just some pics

2012-01-18T20:15:00.000-05:00

Most eligible bachelor playing with his new cows! (Never too early to move into Valentine clothing)

Charlie climbed in bed with Daddy the other morning. He needed the covers pulled up too. ;)

This was the day he demanded that I put on his hat and gloves. Not that we're needing them this year- no snow here! He continued to play indoors for many minutes while wearing this!

Happy Wednesday!!!!

Charlie's first farm show

2012-01-14T15:16:00.000-05:00

Charlie got to attend his first Pennsylvania Farm Show this past week with me and Grandpa. It was well worth the long trip up, also of course, because we got to see Grandma Molly and 3 sets of friends who we wouldn't have seen if we hadn't made the trip. (We saw our friend Woody and his sister Layla on the way up, we caught up with our NICU friend Dalton who lives in PA along with his family, and we got to see my good friend Jessica from my George Mason days and her daughter Mariel on the way back south.)

We started with the antique tractors in the main arena. Charlie was a little nervous here.

Turkeys! (You probably can't see them but you can see Charlie was excited!)

Here's a nice sheep!

They even had alpacas!

Mooo!

This was cool- the baby ducks walked up the steps and then they slid down the slide on the other side.

Lots of chickens! (Charlie asked to go back to the chickens a few times!)

There was a display that had free mini golf. The guy at the desk gave me a "look" when I brought my little guy up to golf, but Charlie hit the ball better and farther on the first try than the 3 teenagers in front of him did! This leftie knows what to do!

Inspecting the next hole before teeing off

The butter sculpture! All donated by Land O Lakes and is put to good use afterward (but not consumed by humans).

There was also a carousel! This was Charlie's second ride ever on one.

Definitely a highlight- tractors!! Afterward, we asked multiple times what animals he saw at the farm show and his answer was always "tractors!" :) There were some big ones, but none quite as big as what I remember from childhood.

Farm Show 1986: Me on the left, age 6, my sister on the right, age 4. Now THAT'S a tractor wheel!

The only thing Charlie missed out on was the food. I enjoyed it though for both of us, especially the potato donut.

A New Year: A New OT

2012-01-03T21:32:00.001-05:00

Charlie and food. Two very yummy things unless you put them together. Then it's oil and water. So, today was our evaluation with an OT which was leftover from our early intervention yearly eval in December.

My fear is that once again, I am getting my hopes up that someone will be able to help us with feeding. But it was easy to get my hopes up while talking to this new person, April. She was really really nice, she has little ones at home herself, and you could just see the feeding-expertness oozing from her with every sentence she spoke. She's also anxious/interested in working with our doctors and our private feeding therapist (who we like) that we've been seeing at the hospital for more than a year.

Currently Charlie's nutrition is: overnight gtube feed: 545 cc's (18+ oz) of pediasure peptide. That's half his daily caloric intake. Breakfast he gets 4 oz. of yogurt, and mostly he's then been throwing that up. Sometimes he gets a new yogurt, other puree, or gavaged 4 oz. milk into his gtube. Lunch is 1/4 hotdog, or an 1/8 of a cheese stick self-fed, then a puree (3 1/2 oz), or milk. He'll eat the occasional cheez-it or two (literally, no more than that) throughout the day as well.   Dinner is another puree, probably with a scoop of duocal calorie powder and milk to drink. He may or may not throw up during another meal. Today he threw up after a whole puree at dinner, then I gave him another one. It's important for him to know that throwing up doesn't mean the end of the meal. He still has to eat something else if he throws up.

So today the OT showed up early, which worked out well so that I could give her the 2 1/2 year summary of everything that is eating and Charlie. It's a long summary, especially when you have to listen while "standing up" (as Charlie insists) and playing baseball/football/golf/basketball with him.

I mentioned his issues with texture (anything lumpy), speed of his meals, the amount he'll take at one time, spitting out bites, gagging, throwing up, the anxiety with the first bite, and how he holds food in his mouth forever before swallowing. (Is it possible we've made any progress with that list of complaints??)

One of the first things April said once she saw him with a cheez-it was "haven't you heard, he has no jaw stability! He grinds the food instead of biting it!" (First time I feel some sense of excitement- she sees something new that I didn't know! Surely she can help fix it!) Her goals are to work on the sensory properties of food, and the sensory exploration of food instead of caloric intake. So we'll be working on exploring, manipulating foods and looking at foods in a healthy way as opposed to strict caloric intake which really is what we've done in the past. Obviously we're all very concerned at the constant throwing up and how that affects his behavior toward food. Also, I'm anxious for another opinion at this point, and really willing to do anything.

Lately Charlie loves to sit on our lap at dinner and stick his fork into whatever food we have (not getting a bite but covering the fork with the taste of the food) then he licks it and repeats many many times. Obviously this is not the way to get calories in him, but it's a great step. (He won't do his with anything on his own plate, but if it's our food then it's good!) April was very happy to hear this.

So we'll be working on jaw strengthening and biting, and exposing him to new tastes. Just getting him to lick different things would be great. She thinks taste will be his strength given that he enjoys doing the fork tasting thing.   She noted that he doesn't like "tiny texture" so anything like a cracker with the "shatter effect" when bitten isn't desirable to him. She wants us to do "meltable solids" like cheese puffs.   He never liked puffs but we can always try again!

We'll also be talking about the shape/color/feel of food, changing the shape of foods (use orange like a ball, cut open an orange, squeeze the juice), and working on understanding names of foods.

The bad thing about all this is that by the time we start seeing April in another 2 weeks, we only have 4 1/2 months before Charlie "ages out" of services.  You lose the Early Intervention program at age 3. Usually, you then go on and get services from the school system, but feeding doesn't "affect the child's ability to do well in the classroom" so they say, so you can't get feeding assistance in the school system. How incredibly frustrating. Hopefully we will easily be able to get ongoing private help then though.

"No Baskethoop"

2011-12-30T22:05:00.000-05:00

This day is historic. We attended a sporting event that Charlie did not like! Orginally we planned to go see Charlie's first hockey game tonight, but college basketball tickets fell into our laps at about 3pm. We haven't taken him to that sport yet either, so we were all game. Then we got there. And Charlie started freaking out. He very clearly told us in words and with body language that he wanted to GO HOME immediately! It was very loud and they dimmed the lights for the players to be announced, so he and I went into the hallway where it was less loud and less dark. He continued freaking out in the hallway but to a lesser degree. We went back inside. He continued to freak out. He and I left again, this time for a long time. At no time could I put him down. His phrase is "carry you!" when he wants me to carry him. He eventually settled down and put his head on my shoulder, and I assumed he was just very tired. We went back inside, and after about 5-10 minutes of more freaking out where we kept telling him we weren't leaving again (until half-time), he fell asleep in my arms. In a crowded, VERY LOUD arena. While I covered his ears with my hands.

He couldn't have been more thrilled than he was on the way out.

Winter Collection Fashion Show

2011-12-29T19:22:00.000-05:00

As I mentioned we have plenty of winter clothes that I do not consider "Christmas" only. Enjoy!

Snowman PJs

We said goodbye to the Uncles last night, and they went home today. Charlie had a great time playing basketball, baseball and football with them, and asked for them daily during their visit. And with their departure was the end of our free meals. We made it a record 6 dinners in a row eating with the Uncles, sponsored by Dave's parents. ;)

Also, Charlie introducing the newly renamed "Dalton!"

Favorites from Christmas: anything Thomas the Train, mini Lightening McQueen and Mater "matchbox" cars, and Toy Story the movie.

Family Time

2011-12-26T20:47:00.001-05:00

Family Time was been fun these last few days. Since the Uncles have been home, Dave, Charlie and I have had dinner at Nana and Coach's for the last 4 nights in a row. Woohoo!

More Christmas Eve (Charlie and some cousins)

This Thomas toy was a highlight!

Christmas morning (that pendent is my Christmas present- it's Charlie's fingerprint)

Charlie's tricycle! Where is the helmet?

Christmas morning

There has been a LOT of tackling Uncle Ryan and Uncle Tyler.

While we were all opening presents in the other room, Charlie wanted to "hit ball! While he liked presents, we did have to prod him to keep opening others. He really would have been perfectly happy with one present to open and then play with.

Charlie and his great grandma, Meme

On Christmas Eve Eve, we made Gingerbread men, which was fun for all!

With all the excitement and extra activity, we've been napping hard too. This was earlier in the week, AFTER nap was over, he came downstairs and slept some more in the chair!

Merry Christmas!

2011-12-25T21:07:00.000-05:00

Merry Christmas Friends!

Love, Charlie, Dave, and Megan

We have had some fun and busy days lately with Daddy not going in to work. Charlie's also having a blast with Uncle Ryan and Uncle Tyler being home. They are doing a great job of wearing him out, and he's sleeping well. More on how we've been spending the last few days will be coming, but here's some highlights!

The boys on Christmas Eve!

Another "boy" picture. Great Grandpa, Charlie and Daddy!

One of the items Santa left!

This doll was also left by Santa. His tentative name is "Barack Obama." I'm not kidding either.

Christmas morning...

Santa...presents!

Yay!

The first load of loot!

2011-12-21T17:25:00.000-05:00

Look at this great stuff that Charlie got last weekend! This is just a sample and doesn't even include it all. I know, we are so very blessed to have so many people wanting to give this guy gifts.

We have: a Melissa and Doug locks and hinges type puzzle, three balls (he also got a fourth, not shown), a Melissa and Doug car carrier which we both think is awesome, a peg board - let me just say these are now made so that when you knock in one peg, the opposite one pops up so the work is never done--, a dump truck which handily carries the very large elephant around, a JMU Dukes hat and a Lightening McQueen stuffed toy! Wow!

How awesome is this back pack Grandma got Charlie? I love it already, but when I put some toys and a book in it for our train ride yesterday and put it on his back, Charlie sort of staggered backward like it was too heavy. Another reminder that we have a little guy!

Little People nativity from some "great" relatives! It's a hit, specifically the donkey that carries the cart with the food. By the way- when Charlie says "nativity" it comes out "tibiby"

Holiday clothes!

2011-12-21T16:56:00.001-05:00

When Charlie was a wee babe, we saw a lot of holiday clothes, courtesy mostly of Nana, who apparently enjoys holiday themed clothing items. ;) Really, this has not abated in any way. Let this Christmas season not disappoint. Here is the 2011 Christmas holiday clothes post! Please note, we also have quite a few winter-themed clothing items which are not included in this post.

A Rudolph shirt with a red nose!

I admit, I purchased this one so he'd have a good shirt for his (very early) picture with Santa (back on November 11.)

Santas and snowmen and penguin and reindeer AND trees! Wow!

Santa Rocks!

These PJs may be the favorite. Charlie likes to tell me who that is on the front of the shirt, in case I forgot. ;)

Christmas Part 1 and 2

2011-12-20T08:35:00.000-05:00

This past weekend we were in PA for Christmas with my cousins, my mom, and my dad. Charlie made out well so far, and Santa --and Nana-- haven't even come yet! We did another night trip up on
Friday like we did for Thanksgiving and Charlie slept essentially the whole way. (He was up very early Saturday morning though). Santa came through just as the group was gathering Saturday afternoon. Charlie was excited to see him on top of the firetruck!

We do a gift exchange with my cousins, and one of the gifts included a Cars bowl and spoon set. Dave stole that gift when his turn came, and here's Charlie checking it out.

Here is Charlie trying some cheese. This is right before he spit the bite out on the floor and then put the piece back on the cheese tray in the right of the picture. ;)

No celebration of Christmas would be complete without some football in the kitchen!

On the way up we told Charlie he would be seeing cousins Annie and Teresa. As soon as he woke up Saturday morning (5:30), he was asking for Annie. Too bad she didn't arrive until a much more reasonable hour. Also, Saturday morning he got all the presents from my mom. I guess he thought that was a pretty good deal because when Dave got up with him Sunday morning he said to Dave, "more presents?" Luckily, we headed over to my dad's where there were, indeed, more presents for him!

Another highlight of the day- during the gift exchange, chaos was all around, and I occasionally lost track of Charlie. One time he reappeared holding a stuffed "Lightening McQueen" race car. He was the only little boy, so my first thought was someone must have given him a present and didn't find me to see him open it. After asking around to see who gave him that race car, it turned out that my sister had brought it for him, and had it in a gift bag in another room to give to him later. She had not given it to him, but he found the bag on his own, went into it and took the present himself. Good thing it was for him!

Thanks Uncle Mark for the pictures. I stole them from your FB page. :)

Early Intervention

2011-12-14T10:04:00.000-05:00

Before I talk about our latest early intervention news, I wanted to share this photo my dad took at Thanksgiving. When you say to Charlie, "say cheese!" he throws his arms in the air. He's better if you say "smile!" but the photographer had not been warned at this point. So "say cheese!" happens and his arms fly up and he nails me in the eye- my open eye. And it HURT! We did manage to get a good one after that but my eye hurt for a while.

So on to our news. Yesterday we had our yearly evaluation for early intervention services.
A recap if you will bear with me:
Oct. '09: Charlie has his first eval a few weeks after coming home from the NICU. He didn't qualify for services because he's not delayed 25% + yet (because newborns aren't supposed to do anything).
Jan. '10: He's not picking his head up at all during tummy time, he's reevaluated, he qualifies for PT.
Feb. '10: I mention feeding issues to PT, she sets us up with OT for feeding as well.
Dec. '10: Our first yearly eval. He's 18 months old, and he tests at a 9 month cognitive level. So we start services with a teacher for cognitive delays, and we lose our feeding person (long story why we lost her, but Charlie was seeing feeding specialists at the hospital at this point 2 x weekly so I was fine with losing her).
Jan '11: Charlie starts walking, we lose PT. He starts the "preschool class" which we LOVE.
March '11: I have Charlie tested for speech at 21 months old. He tests at 11 months expressive and 13 months receptive. Speech services start, at first once every other week, and most recently every week.

It's important to note that at some point since our first evaluation, the laws/rules changed here in Virginia, and now children who are born early and have a "long" NICU stay automatically qualify for services whether their delay is 25% or not. I know the NICU stay rule is as long as it's over 1 month, and I believe the gestational age may be 28 weeks (I believe it is below 30). In any case, Charlie cannot "test out" of services now- he's automatically covered until he's 3 because his NICU stay was 16 weeks.

So our report of yesterday: He will no longer get the teacher for cognitive work or speech services. At 29 months (last month when he was re-tested) his speech was 24 months expressive and 22 months receptive. The 22 month is probably wrong, but some of the questions are: does he calm down when you explain he has to wait a minute before dealing with his needs? He does not calm down, but we believe he does understand and is just not happy about it. In any case, that makes him test at 22 months. He is regularly saying 2-3 word phrases, with new ones every day, and we just need to be aware that he may have articulation issues down the road (l's, and r's may be a problem). So we are to be sure to model correct pronunciation/articulation and correct him when he says something wrong. As with everything, the earlier it's fixed, the easier it is fixed!

He will continue the class, and he will also be evaluated for OT services with an expert in sensory "stuff" in January. Hopefully that person will pick him up and help us with some feeding stuff in these last 6 months before he's 3! At this point, I believe the assistance he needs is with the sensory and oral motor issues.

Whew! Big day!

BG Christmastown

2011-12-11T13:54:00.000-05:00

We went up to check out Christmastown on Friday night with Nana and Coach. It was a little chilly and at times drizzling, but we had a great time! First stop was the Sesame Street show which was NOT a hit. Charlie was scared to death the entire time- most likely because it was VERY loud where we were sitting. He did clap though. Afterward when asked he said yes he liked it, no he wasn't scared, and yes he wanted to go back. :)

Then on to see Pierre the Penguin!

And some real penguins too!

Charlie loves Frosty again this year, so he was thrilled to see this big guy!

First carousel ride!

Do all little kids run up to Frosty to give hugs?

There was very little that Charlie could ride- these gliders were one of the only real rides he could do- and it was with a parent.

He looks so teeny up there, doesn't he?

In other news, I was at a baby shower Saturday for my college friend Christina, and there was a game where we had to guess mystery jars of baby food by sight. I am proud to announce that I won (to which Christina said she assumed I would win), but I did miss 3 out of 10. One was green and it was a medley of veggies- I just said peas, one was pears and I thought apples (very close!), so the only one I really failed at was peaches. Obviously, Charlie's pureed diet did me good in this contest! I do hope there comes a time in the future when I would fail at this type of game -when Charlie figures out how to eat age-appropriate food! It was great to catch up with some friends who I see all too infrequently. :)

More words

2011-12-09T06:57:00.000-05:00

Speaking of Charlie saying things I didn't know he knew- last night he repeatedly asked Daddy for "Sports Center!" (it took 5+ times of repeating it before Daddy figured out what he was saying). Also, when Dave took him upstairs to bed and said "give Mommy a hug," Charlie said very clearly, "family hug!" because he wanted to get hugs from both of us together. I can't remember ever saying "family hug" so once again, I wonder where that came from! It sure was nice to hear though!

2 1/2 years!

2011-12-07T15:59:00.000-05:00

Charlie is officially 2 1/2! He's been feeling heavy to me lately so I took him in for a weight check today since we don't have any doctor's appointments this month (woah!). He was 22 1/2 pounds! Hard to say for sure if it's accurate (seems huge to me!), but he was undressed and cooperating! Just a month ago he'd been weighed at 21 lbs, 5 oz, which had been virtually no change for 3 months. Maybe he was catching up for lost time??

So what's Charlie up to at 2 1/2? Talking. A. LOT. Most of the time he's very clear with what he's saying but if it's a new word/phrase I haven't heard him say before, sometimes that's tricky. Like "train station." I told Charlie we had to go get Daddy from the train station, 5 minutes later in the car he starts saying "train station" but it took about 8-10 times of repeating it before I figured out what he's saying. He's also definitely picking up on things when I'm not aware of it. Today he said "bless you" when I sneezed. No one was around to cue him- it was all on his own. (Then of course, he pretend-sneezed a few times to I could say "bless you" to him.)

For a while we'd been doing the reward system when Charlie would take a nap without carrying on to the point of making himself throw up. Charlie loved the idea of a "prize." Some days, if we were having a hard day especially and putting him down for a nap was eliciting a lot of crying, I'd tell him at the beginning of nap time that he could get a prize if he was good and didn't throw up. Today, there was no mention of a prize by me, but when he woke up he looked at me with sleepy eyes and said "prize?" He was too cute, so he got a prize- today was a pair of $1 binoculars. I don't think he can see through them at all but he's enjoying them!

Charlie is singing the ABC's, counting, singing Jingle Bells and Frosty the Snowman. He also does Ring around the Rosie, and a few chants from library including the apple song. You can listen to his version below.

The real words are: Way up high in the apple tree, two little apples smiled at me. I shook the tree as hard as I could, and down fell the apples. Mmmmm, they were good!

Charlie says: Apple tree, two apples me, shook it hard, down apples, mmm, good! There are also movements that go along, but Charlie wasn't interested in doing them since whatever is in his hand is more interesting!

What else is going on at 2 1/2? He loves Santa (and we've seen him 4 times so far at the mall). He's still in a crib, and is still in a carrseat turned backwards. He continues to watch too much TV- and seems to be able to recognize most morning programs on PBS and Disney. Curious George is a new favorite (specifically the baseball episode) with Mickey Mouse in 2nd place, and he likes any of the train shows- Thomas, Chugginton, Dinosaur Train. Throwing up continues daily, even though he's taking medication for reflux, delayed gastric emptying, and constipation. We continue to count calories (aim is 1100/24 hrs.) and keep track of everything he's taking in.

I think Charlie is going to "get" Christmas this year. He's really excited about Santa at the mall, and he loves our tree. When we ask him what he wants from Santa, he says "presents!" He also is enjoying looking for "Joe the Elf" daily. He usually finds him at says "Silly Joe!" :)

The Christmas Tree Has Arrived!

2011-11-30T18:47:00.000-05:00

On Monday, we all went and picked out a (live) Christmas tree! Woohoo!

Overnight, our Elf on the Shelf, "Joe," put lights on the tree!

And Tuesday morning, Charlie got his ornaments for the year- it's a set of 5 Sesame Street characters, hung down low where he can see them. :)
Happy Holidays!

Two of the (many) new banner outtakes:

NICU Family Advisory Council

2011-11-29T09:45:00.000-05:00

Before my trip to St. Croix, I attended the first meeting of our NICU's Family Advisory Council. It's brand new, and it's a mix of families, nurses, and NICU administration. The goal is to support and advance the NICU's family-centered approach. The first meeting was spent introducing ourselves, and there was really no time spent on any "business," but I'm sure that will come. We had to submit pictures of our child in the NICU and then today, and tell a little about ourselves. I have to say, though we live every single day with the effect of Charlie's prematurity- specifically his feeding issues and poor growth- I really thought I was over the emotions related to the NICU experience. Even at the time, there were only a few occasions that I really broke down in tears (one of the first times I left at night to drive an hour home to our old house, the time they tried unsuccessfully to extubate him, a month after his due date when he still wasn't taking a bottle). Overall, I think I was pretty positive in general. But hearing everyone's stories and being there to tell my own was much harder than I anticipated.

Just looking at Charlie's NICU picture on the big screen had me in tears- much to my surprise. He was just so tiny at 620 grams. The message I told was one that I've recently realized makes me unique. Most parents who tell their preemie story talk a lot about the shock of having a baby suddenly born early and the fear they had for their lives (at birth, or multiple other times throughout a NICU stay with surgeries and infections.) We had none of that. I still contend that I was the happiest mother leaving the hospital without a baby. We were told at 21 1/2 weeks that Charlie was IUGR (he wasn't growing the way he should), and there was a good chance that he would die before he was big enough to deliver. We were sent home to wait. At 28 weeks finally he was big enough that he could survive if he was born- the magic number was 500 grams, and I was sent for constant monitoring at the hospital. THAT was the hard part- wanting to keep him in to get "older" and bigger and improve chances of survival, but not leave him in so long that the blood flow in the umbilical chord would be reversed and he would die. We stayed at the hospital for 2 weeks until Charlie was born at 30 weeks.

I had weeks to get used to the idea that if Charlie was born, he would be in the NICU and not coming home, and I was thrilled to be off bedrest, so I was very happy once he was born. I was just thrilled that he was born alive. I never feared for his life once he was born as most NICU families do, I only feared that he'd die before he was born. And though we had a long NICU stay (116 days), it was uneventful. No brain bleeds, surgeries of any kind, no real issues with his eyes, no infections, etc. We apparently drew the card for severe, long-term feeding issues, but we got lucky in many respects.

Then

Now

Everyone had a different story- at least two parents had lost a baby in the NICU, some have permanent brain damage or disabilities far far worse than what Charlie deals with, and some are now perfectly healthy, thriving children. The common denominator with all of us though was a deep love and appreciation for our Children's Hospital and the NICU specifically. I look forward to a meaningful experience giving back through this committee.

Thanksgiving Weekend

2011-11-27T13:18:00.000-05:00

With about 42.5 million other travelers, we headed North last Wednesday to see some family for Thanksgiving. Charlie got to see his cousins, and we got 2 Pennsylvania Thanksgivings, as usual. Friday I even got Charlie to eat about 5 pieces of stuffing, which was pretty exciting. Then I decided to get him to try mashed potatoes which freaked him out and ended the whole meal. I know I know, I pushed my luck.

Annie (20 months) and Charlie 2 1/2, Pretty much the same size!

All the cousins

It was a quick trip, and probably always will be as Dave's "year-end" for work is the end of November. So he has just a few more days to hit is "billable hour" goals. Gotta love attorneys. (We do, he pays the bills!)

On the way home, we stopped at a rest stop and they have a new installation since the last time I stopped. As soon as Charlie saw this "LOVE" art, he yelled "O!" That's the only letter he knows by sight, but he'll pick it out of a sign, or billbard, or this artwork. He kept trying to climb up the side of the "O" and was frustrated that it couldn't be done.

Now, on to Christmas!

Santa

2011-11-22T21:09:00.000-05:00

Blah, blah, blah, I know it's not even Thanksgiving yet, but I have waited already a week and a half to post this!

I really hope Charlie "gets" Christmas and Santa this year. Our tradition has been to go see Santa immediately as soon as he shows up at the mall. (Before the germy kids get to him). This year Charlie saw Santa on Veteran's Day. :) He was really excited to meet him, and he has made us stop the other times we've been in the mall since the initial meeting this year. I guess if he continues to visit him, the "going-before-other-kids" thing doesn't exactly work... But he's not at all scared of Santa and really seems to like him. We'll see if we can explain the whole "bringing presents to good boys" concept.

How insane is it that we have three years of Santa pictures already! Time sure does fly.

How awesome is it that Santa is the same guy all three years??? And this is Mall Santa too! Same guy!

Virgin Islands baby!

2011-11-22T20:26:00.002-05:00

Dave spent 8 days in the US VI for work this last week. Since he had to be there over the weekend, I went down Thurs-Sun. This involved 3 grandparents' help with taking care of Charlie, but it sounds like everyone had a good time. (Getting away- not as easy as it once was!)

We did a lot of exploring St. Croix.

Dave feeding chicken part of his lunch in downtown Christiansted.

Rocks at Point Udall- which is "regarded as the easternmost point of the United States" accordingto Wikipedia. Quick aside: My friend, Allison, a gifted teacher, mentioned to me that Alaska is actually the Easternmost point becuase it crosses the international date line. I could not confirm this via Wikipedia, and you know Wikipedia is never wrong.

How awesome (and unpopulated!) is this view?

We hiked for an hour or so around Pt. Udall on some tough trails (and me in flip flops!) Dave went all the way down to the beach and took this picture of me up on the rocks.

Our beach at the hotel, where Dave stays everytime he's on St. Croix.

Happy Thanksgiving!
By the way, Charlie- who obviously has "serious-Charlie-face" here, has just discovered that some of his pants have pockets, and he loves it! He can't get a hand in himself though, so he bothers me constantly asking for help to put his own hands in his own pockets. :)

Election Day

2011-11-13T19:27:00.000-05:00

If you know me in real life, one thing you might say about me is that I'm politically inclined. In fact, Dave and I met in our College Dems group. If you knew me in high school, I may have actually dragged you to register to vote when you turned 18. And I mean, drive you in my car down to the Registrar's Office. ;)

I know at least one reason I am that way is because my mom always took me to vote with her when I was little. I remember the old fashioned get-behind-a-curtain and pull the levers. I even remember them having a little voting machine for kids to teach them about the process.

So, it should come as no surprise that even in an off year when the only contested race we had to vote for was an at-large seat for City Council, I took Charlie with me this past Tuesday, and we voted. At 9:30 in the morning when the only other people up there were 80 years old and (of course) thought Charlie was the cutest thing they'd ever seen. :) This was actually Charlie's second year voting with me. He missed the very first election when he was 5 months old because we were under house arrest then. One old man asked jokingly if Charlie was here to vote himself, and I very seriously told him he'd be back in 16 more years to vote himself. I sure hope he gets "the bug" from his Mom and Dad!

Daylight Savings!

2011-11-06T13:22:00.000-05:00

Charlie woke up today for the first time at 6:20 (old time) 5:20 (new time). We would have been happy with that amount of sleep, except of course, it's daylight savings! Thankfully I got to sleep more, and Dave took him for a few HOURS! Woohoo!

So he was up an hour longer than normal this morning before lunch and nap to get him on the "new time." Just as I cleaned him up from lunch and turned around to get him some milk- this is what see:

Charlie sleeping in the high chair was so funny, of course, I grabbed my camera!
It reminded me of video number 1 from this post over 1 1/2 years ago!

The grocery store story

2011-11-04T19:49:00.001-04:00

Charlie and I were sitting on the couch. I realize he does not have his hearing aid in. OH NO. I backtrack- he was sitting on the couch, before that in the kitchen, before that on the stairs, before that washing his hands, before that climbing in the tunnel, before that in the garage, before that outside playing at the rain spout, before that in the carseat, before that IN THE GROCERY STORE. Crap.

After tearing the house apart in all the places he had just been, and tearing the car apart, and calling the grocery store twice but having no one answer, and asking Charlie a thousand times where it was (and getting zero response), we got back in the car and went back to the store. THEY HAD THE HEARING AID! Thank God! Charlie is now grounded. No Mickey Mouses allowed in his bed for a week! (That's what you do before there is a game boy or ipod or phone to take away!) ;)

Some thoughts

2011-11-03T19:23:00.001-04:00

We had an appointment with the new endocrinologist doc that I like. Interestingly, Charlie hasn't gained any weight in 3 months (currently 21 lbs, 5 oz.), but he did grow in length- he's now 32 1/3 inches tall. We are on the track of getting growth hormone in the future, but we just don't know when it will start. Once started, it likely means he'll be getting a shot a day all the way through puberty.

He licked a piece of chocolate Halloween candy today! He probably took 5 licks, then the chocolate started melting on his hands, and he threw it down.

After a month or so of bad sleeping, and us essentially keeping him confined in his crib til 6am no matter when he woke up, he slept til 7am today! Woohoo! He's kinda a little sniffly, but if anything I'd expect worse sleep, not better sleep. Unfortunately at naptime when made him stay in his crib til 2:30 "when the bunny woke up" (bunny alarm clock that is), he did the throwing up thing again. He only woke up 6 minutes early, but when he wants out, he wants out.

Charlie likes to say "buh-bye!" and wave to me a lot to me, usually if I asked him to come with me to another room, or get ready to leave the house. He wants me to go, and for him to stay!

He also is now repeating 2 and 3 word phrases when we say them. He's coming a long way with talking!

Today while counting, Charlie counted all the way to 19! I didn't know he knew past 14.

Charlie has started taking out his hearing aid all the time. Not sure why this changed because he was really good about it for the first week. Either, he's now figured out how to take it out, and he didn't know before, or something is different about how its fitting now. Apparently kids can need a new ear mold every 2-3 months as they grow- and of course I expected that we would be much slower than the normal kiddo in needing new ones as his growth is so much slower, but I'm starting to wonder, even though it's only been 7 weeks since the mold was done. I've heard the aid "squealing" a little bit here and there too while in his ear, which says it's not fitting right. Have to keep an eye on that!

And here's some Halloween pics- he made out like a bandit in the candy department for sure!

Charlie helped us hand out candy after a bit of trick or treating himself. He'd stand at the top of the driveway waving to kids as they walked away and saying "Buh-bye! HalloWEEN! HalloWEEN! (Meaning Happy Halloween!)

Happy Halloween

2011-10-31T15:12:00.000-04:00

Happy Halloween!!!

Our Jack-o-Lantern

2011-10-30T13:01:00.001-04:00

What's in there?

We weren't too sure how Charlie would like pumpkin guts- and he really didn't like them! But he checked things out, and touched some guts here or there throughout the process.

Friendly Jack-o-Lantern and Charlie

Yesterday we also went to a football game (JMU!), and it was cold, windy, and rainy. I was very uncomfortable, but unfortunately I was not in control of the car keys so I couldn't leave. But Charlie did so good- enjoyed the game, then took a nap believe it or not (on Nana's lap), then woke up yelling "football! yay!" Perhaps he'd sleep better at night if we turn his room into a huge stadium with lots of people screaming and loud music playing. ;)

My ABC's by Charlie

2011-10-28T18:23:00.000-04:00

The ending is particularly muddled, but you can pick out a letter here and there. Also, I love how he apparently didn't realize I had a camera out til the very end when he stands up and says "CHEESE!"

Charlie's hearing aid!

2011-10-27T07:27:00.000-04:00

After many many delays, Charlie officially has a hearing aid! Just one for the right ear, and it's not even really ours. It's through our state's loan bank. We can have it for 6 months, then ask for a 3 month extension. The mold part that's inside his ear not only is ours, but will have to be redone as he gets bigger- supposedly as often as every 2-3 months. So far so good- he does not appear to be bothered by it. We got it yesterday late afternoon so he only wore it for a few hours before bath and bed. This morning I put it in (while dealing with minor screaming), and then he started pointing to it and saying "doctor." On the way home yesterday in the car Charlie kept putting a cupped hand to the ear with the hearing aid as if he was listening. So hopefully he does detect a difference.

The new bunny in our lives

2011-10-24T20:03:00.000-04:00

We've had some crazy days lately. And by days, I mean nights. During the last week and a half we've had many night wakings (5-8 a night) where he does go back to sleep quickly, and many early mornings- one morning Charlie woke up at 2:45 and never went back to sleep. Mostly, he's in his crib, crying for hours in the wee hours of the morning. We've had bedtimes for Charlie as early as 6 or 6:30 and bedtimes for us parents as early as 8pm in anticipation of hard nights. I have no idea what's going on with this guy. Needless to say, upon awakening - no matter if it's dark out or not, Charlie wants to start his day. Even at 3am. I don't even know the last time we woke up when it was light out. It's always dark out now. Most recently we've decided 6am is the earliest we're getting him out of his crib, and we've needed to bring in a bunny to help make that point clear.

I'd seen this bunny "alarm clock" in a catalog before, and my friend Laura reccomended it. (Preston is a notorious early riser). So you set it so that the bunny is sleeping all night, and at 6am the light changes an lights up the "awake bunny" side instead of the "sleeping bunny" side. It also has a second setting for naptime.

So Charlie definitely gets "it." He likes to go into his room to see if the bunny is awake or asleep. When I go in to get him and I ask "is the bunny awake yet?" He is quick to respond "bunny awake!" But he doesn't seem to look at the clock at all if I don't first mention it. So there is still lots of crying. Hopefully this will end soon.

To worst part of this whole sleep issue is that he now throws up to get our attention in the middle of the night. We ignore the crying and screaming (after going in once to say "it's the middle of the night, go back to sleep"), so he started making himself throw up to get us to come in and clean him up. In the last week he's had sheets changed as much as three times in one day. Our latest strategy with this is to let him sit in the puke once he throws up. How hard is this!? We've had a few nights where we've turned the g-tube night feed off, so that when he goes to throw up there's nothing there. This is hard from a calorie perspective since he gets 50-60% of this calories overnight.

After consulting some of our early intervention therapists, we made an appointment with a behavioral therapist for last Friday concerning the throwing-up-for-attention. She didn't take our insurance, but we're going to try to see if our secondary (medicaid) insurance will pick any of it up. Our cost is still to be seen. Unfortunately she didn't recommend anything we weren't already doing. She said get the bunny clock. ha! (It had come in the mail 1 hour before our appointment). She said over and over she thought he'd stop doing it within a week, and she had lots of faith this would soon pass. Don't think we'll be seeing her again, as she really wasn't much help at all.

I know that sleep troubles happen sometimes when developmental milestones are being hit, and Charlie's language is absolutely exploding right now. I hope that's the problem. I've also backed off a calorie powder that I had increased around the time the sleep problems started, in case that's causing problems.

Keep your fingers crossed that we all get a good night's sleep tonight.

Pumpkins and More!

2011-10-19T12:23:00.000-04:00

We're having MAJOR sleep issues in our house right now. Very little sleeping is happening, and lots of throwing up is happening our of anger that we won't let him get up and watch cars at 3am. I don't want to talk about it, so here's some nice fall pictures of our trip to the "pumpkin patch" (which Charlie says very well!), and a visit with a donkey, some goats, and a few horses. There was a hay ride, and Charlie now loves the Bouncy Houses. He had a ball, even with other kids- and big kids- bouncing in there with him!

Charlie and the First Haircut!

2011-10-16T13:10:00.000-04:00

At 2 years and 4 1/2 months old, Charlie got his first haircut! We went the expensive route- for $16, he got to sit in a fire truck with a seatbelt, watch Elmo, and get a haircut from a lady who understands who to deal with a screaming child who is scared to get his haircut. Dave really wanted to take him to HIS barber who gives him a neck massage and keeps Playboy in the back room for anyone who knows to ask for it. I put the nix on that one. Perhaps as he gets older he can go to Larry, but only if the magazines are Highlights and Ranger Rick.

Anyway, it started badly, even though we prepared Charlie in advance with some Sesame Street "boy gets haircut" videos. Also, he enjoyed saying "haircut" beforehand. Eventually he calmed down to just some whining, but she never put on the smock, for fear of him freaking out more. We didn't really get the top cut, mostly just the back, as it was getting pretty long. Once she started cutting, it didn't take more than 3 minutes. :)

Before

During

After!

Charlie as "The Count"

2011-10-15T19:17:00.000-04:00

Charlie is counting up to 12. He says "ix" instead of "six", and seven, eleven, and twelve may be hard to understand by others, but he does it! He also enjoys counting like The Count on Sesame Street, with the laugh at the end. Apparently here in this video, the "number of the day" was 5!

Halloween Collection 2011

2011-10-14T12:56:00.000-04:00

Charlie sure does rock the holiday clothes each year. This is Halloween Collection 2011. Skeleton-wearing-a-neck-tie pajamas are called "bones" if you ask Charlie.

The bat shirt is really confusing him since he knows a bat belongs in baseball. Also, the trick or treat pumpkin is a favorite these days. Charlie has it wherever he is.

The bat socks!

He's going to be a lion this year, and he's doing really well with practicing saying "trick or treat!" Too cute! I hope he gets lots of candy so I can eat it. ;)

Want to see how his little pumpkin has grown? Last year, and the year before that!

'Up!

2011-10-11T19:56:00.001-04:00

Oldest news on the block is that Charlie is a puker. Today's count was twice overnight (thankyouverymuch) and twice during the day. Months ago I remember reading on a favorite preemie blog that Itty Bitty Becca likes to make her baby dolls throw up. You know, cause it's so much a part of her life as well.

Our time has come for this trick as well. For a while now Charlie has been picking up the puke bowl I keep in the living room (no comments on that, please) and pretending to throw up in it. He says "Up!" for throw- up. He also says "Up!" when he wants to get picked up or get up on a chair/couch, go upstairs, or get out of his crib. So you need to be aware of context.

Today one of our therapists had Charlie pretend-feed his stuffed Mickey Mouse. He fed him with a fork (he had pretend hot dog), he helped him drink from a sippy cup, then he got out the puke bowl and Mickey lost his lunch, complete with sound effects from Charlie. Sigh. What drives me nuts is that no doctor seems to be concerned about the psychological effects of this chronic throwing up. They obviously exist. :(

Weekend with Grandma/Big Test Day

2011-10-10T20:42:00.000-04:00

Dave and I left on Thursday night for Syracuse, NY for the wedding of some good friends. It was a great weekend of sleeping in- an all night long. Lately Charlie has been waking a bunch of times during the night, and we need to get up and calm him for a minute or so. Also, his wake up time is between 5 and 7am. So sleeping uninterrupted til 8:30 was awesome. The party was pretty wonderful too! Dave was best man and did a great job with his speech. So overall- awesome weekend, just word to the wise if you're trying to get a cab from the Syracuse airport at any point in the future- don't stand in the taxi line, you have a to have a ticket from inside the airport from the (not easily spotted) taxi desk. So we wasted 45 minutes around midnight Thursday night not knowing that info.

Charlie stayed home, and Grandma Molly came to babysit. Sounds like the had a good time, Charlie learned to say Grandma, he only threw up twice for her over 10 meals, and they got to see "Elmo Makes Music" live Sesame Street show. I bought tickets months ago for us to take Charlie to the show without realizing that it was the big wedding weekend. So, I'm glad Charlie still got to go even though we couldn't take him. The report was that he sang and danced along, clapped at the end of the songs, did some counting (with the Count!), and sang his ABC's along with the characters. I am sad we missed that. So things were great for them, but this morning he did have a couple of scrapes and scratches.

Ouch!

So we got home at 10:30pm last evening, and this morning at 8:30am he had his big sedated ABR hearing test. Last week someone called from the hospital to go over Charlie's history in prep for today, and they said this test would take "1 hour from sign-in time until walking back out the door to go home." Knowing this was involving sedation, that sounded insane, which it turned out to be. It took 4 hours start to finish. Charlie threw a complete fit when they put in the IV- including crying and saying "help please!" He also really fought the sedation med as he cried and screamed the whole time while falling asleep. Poor guy! So what I learned from the test: Left ear is normal (we already knew that), and the right ear has moderate conducive hearing loss - moderate for low tones and mild for high tones. So the inner ear is fine, and there is still a chance that the problem is something that can be fixed down the road surgically. We won't know that til we do an MRI, which we have no plans to do anytime soon. And we're still on track for a hearing aid in the near future.

When Charlie "woke up" from the sedation, again, there was crying, and we had to keep him awake for 15 minutes. As soon as he was allowed, he was back asleep, and I had to carry asleep Charlie from the hospital to the car. He slept for a few hours this afternoon, but before bed tonight, he was definitely looking like his old self. Hopefully tomorrow will be back to normal! :)

This next picture is for my mom. Apparently I used to enjoy lining up my tractors as a child, and Charlie did this with no prompting last week!

Another discharge!

2011-10-06T16:51:00.001-04:00

Charlie was discharged from the NICU follow up clinic today!
(So this leaves us with just our pediatrician, ENT, GI, endocrin, rehab, and g-tube clinic folks to visit with now)

At 28 months, he was 22 lbs, 31 1/4 inches tall and his head was 19 inches. His weight and height continue to be below the chart, but his weight is getting closer to the 2nd percentile as he gets older. His head was in the 25%! (I believe his head was on the chart 6 months ago as well.)

His gross motor level and language skills (receptive and expressive) are all at a "24+" month old level, which is within the normal range (1st time to be in the normal range!). His fine motor/visual problem solving was at 30 months, above his actual age. A far cry from what the early intervention folks said in January- he was at a 9 month level (he was 19 months then). So it's fair to say he's done quite a bit of catching up this year.

We simply don't need to be seen there anymore! They are mostly looking at developmental stuff (though we talk about the "whole-Charlie," which I appreciate).

The doc talked to us about the throwing up/eating issues, and we discusses going somewhere else for a "second opinion." The closest option is 2 hours away, and a really optimal place is 2 1/2- 3 hours away. Something to think about there.

We are all about to have a really exciting weekend, so I'm sure there will be stories to share next week! :)

Pic-ick

2011-09-28T17:20:00.000-04:00

We went to a picnic on Sunday for Dave's work- or as Charlie would say "pic-ick" or " picky-picky-picky-picky-picky-etc." It was wet. We've had days and days of rain, and at times, our back yard has been a pool. So the picnic grounds were wet, and by the time we left, Charlie's pants were wet and muddy all the way to his knees. A few times my whole flip-flopped feet sank all the way into water puddles in the grass. So imagine on Charlie the water probably covered his ankles. He didn't mind it though!

There was a clown who made this balloon. Then he played with it in this (apparently undetectable) puddle and half of it broke. I think it WAS a dog. The clown had a bird, and Charlie will now say "Clown's bird."

There were also a lot of blow up bouncy houses, which in the past Charlie has not enjoyed. Also, they were wet and muddy, and there were lots of bigger kids to bounce around him, which was not good. This picture was pretty much the height of the fun. He never went in this maze really, but he stood at the entry way when no other kids where around. He also went into a bouncy house when it was just him and me, and that was fun for him. At first he didn't think I was going in too, and he wasn't happy, but when I also got in, he decided it was fun.

We also attended a (wet and muddy) football game on Saturday night. It was a last minute decision as the rain was bad all day, and we were shocked at how many people decided to attend. The rain actually stopped for a nice stretch during the game. We missed the beginning because we got stuck in about 20 minutes of traffic just to park, and then we had a 10 minute walk to get to the stadium. Charlie enjoys football, but I still think it's second to baseball. He asks all the time for baseball, recognizes the stadium when we pass it on the highway, and doesn't understand the season is over. Poor guy.

Words

2011-09-25T09:54:00.000-04:00

Charlie is quite the talker these days. He has just a few two word phrases that he says regularly. Mostly it's "baseball game." And "I ove dada/mama/whoever." We are hearing much less of the growly "Darth Vader" voice, and almost everything is said now in a regular voice. When he's scared because I'm asking him to talk in public or it's a new word sometimes it's a whisper. He does a lot of identifying things around us, or asking a question with one word like: "Elmo?" means "Can I watch Elmo?" He doesn't really answer yet if you ask a question. (Other than the answer "no no no.") He does repeat almost anything you ask him to say.

I wrote down a list of words he was saying the other night over the course of an hour or so just to see how much he was saying. I didn't keep track if he said it more than once though. Mostly these are words he just said out of the blue, but occasionally they are a word I said that he repeated.

Here's the list:
uh oh uh oh
rain
baseball
cars
dirt
bye bye
Ah-mus (Thomas the train)
ball
Coach
I ove Nana (I love nana)
baseball game
down
no no no
it (sit)
bat
wa-wa (water)
ip (sip)
chooos (juice)
id (Sid the Science Kid)
dada (where is dada?)
home
hi (said while standing on my lap, 1 inch from my nose)
up
mah (pretending to give a kiss)
la la la (singing the Elmo theme)
Me me (great grandmother)
Papa (great grandfather) - he was asking where they were
people
ah ah ah (when he's doing something he's not supposed to, he says this, as I would do if I were catching him doing something bad. He gives himself away. I love this. I hope it never changes).
beach
baby
Elmo
poon ( spoon)
eat
Kikie (Cookie Monster)
zoo zoo (zoom - while playing with his cars)
cheese (he stands in one spot- decides he wants me to take his picture out of the blue, and says cheese. So I put a pretend camera to my face and say "click" and he's satisfied)
George (he wants to read his Curious George book)
burp
hug
hurt
hand
Kickey (Mickey Mouse)
ess- seh (Sesame Street)
gog (dog)
book
A B C O O O (I think "O" is his favorite letter)
egg
baby girah (giraffe)
balloon
boat
read
Maine (his Goodnight Maine book)
Numbers 1- 12
watch
splash

Dentist

2011-09-17T15:14:00.000-04:00

Charlie had his first appointment with a pediatric special needs dentist on Thursday. Dentist happens to be a good friend of Dave's from growing up. Score!

His teeth look fine, the throwing up is not affecting them at this time. His preemie-hood doesn't seem to have had a negative effect on his teeth that we can tell. yippee!

He did say they like to see babies by the time they are one. Charlie got his first tooth at 14 1/2 months. hahaha. And for a while there, you may remember we thought it would be a black tooth. Thank goodness that didn't happen!

The dentist was really really quick, and Charlie did really really well! I expected throwing up, and he didn't even gag!

Charlie's latest hearing loss drama

2011-09-14T20:44:00.000-04:00

Let's start with a short hearing recap:
Early May: We go see an audiologist for a hearing test. NICU follow-up developmental pediatrician suggested it just because Charlie spent so much time in the NICU. We did not have any concerns.
Her results are inconclusive. She says it would be better if 2 audiologists could do the test since Charlie's so little and not totally cooperating. She says if the two audiologists can't get conclusive results that we may have to do a test while Charlie's sedated.

Mid-June: Test with 2 audiologists tells us he has moderate hearing loss in right ear. Seemed quite sure of the results and didn't say she had any real questions. Refers us to ENT to see if the issue is fluid.

Late June: ENT says it's not fluid, ear tubes would not help, Charlie needs hearing aid.

End of August: Another appt. made with two audiologists- different than the first folks, unfortunately. I thought we were moving forward with hearing aid stuff but turns out they were doing more testing. Charlie didn't cooperate. Didn't really get any more info. They say we'll go ahead with the hearing aid process, although I'm told "it may not actually make a difference in his hearing." SWEET. Then why are we going through all this????? Also, this is the opposite of what the doctor said during the last visit.

Today: We saw the people who are to make the mold of his ear and get this process started. I was told at the last appointment that we'd see someone two weeks from today to get the aid, and then checking in at regular intervals for a while for testing to see if things are "working."

So today, the process starts terribly- we get there at 8:20 for an 8:30 appointment, no other patients were there the entire time we were there, but they couldn't talk to us until 8:50 because of insurance referrals and records transfers. Why we can't deal with this stuff in advance is beyond me. I had maybe 45 seconds of papers to sign, and the rest was mostly the lady talking on the phone to the audiologist who did the last test that didn't go well- talking to that person where I could hear the conversation while we were in the waiting room. So she takes a mold of Charlie's ear (and he did really well!), and tells us she doesn't have enough information for knowing what type of help he needs. So, he needs the ABR (Auditory brainstem response) test done with sedation. SWEET!

I am not happy that we keep getting dragged along in this process, thinking we're making progress and then hearing he needs to have this "big deal" test done first. Each person we've dealt with has a new opinion apparently.

So the lady we met with today is supposed to call me tomorrow with the directions for what I need to do next to schedule the ABR test. (and why she couldn't tell me today- I don't understand.)

Oh well, hearing loss or not, hearing aid or not, Charlie's still a cutie, and he's making progress with his speech! He's counting now- sometimes he counts like the Count on Sesame with the laugh at the end" "Ah. Ah. Ah!" and sometimes he's counting all the way to ten. And last night he counted: 1, 2, 3, 4, 5, 6, 5, 5, 5. :)

JMU

2011-09-11T18:27:00.000-04:00

Yesterday was my birthday, and we went up to JMU for the game in the brand new stadium. We got to see cousin Lauren who is a freshman,which was great. We took her to lunch and introduced her to Kline's ice cream. We got to see some other friends where Charlie "played" cornhole. By the time the 6pm game started, it had been a long, pretty-much napless day, and Charlie was exhausted. Even though it was the loudest game I've been to (new speaker system and scoreboard), Charlie fell asleep. After I took this video I took him in my arms to see if he could sleep better in my arms, but as soon as he'd drift off, the yelling would start, and he'd startle awake again. So we saw the band at halftime, met the Duke Dog on our way out, and headed to our hotel so Charlie could crash.

I think these guys look great in purple, no matter what Grandmom F. thought about boys in that color! :)

Charlie kept pointing at the Duke Dog and saying "gog!" (dog)

For those that know JMU, this picture of the lit stadium was taken from ISAT. We were amazed at the stadium's size!

The basics

2011-09-09T13:48:00.001-04:00

Since this blog is not only for YOU but also for me as I chronicle Charlie's adventures, I want to take a post and give some basics about where we are at 2 years and 3 months.

First off, the paci situation: It's been less than a week now since the paci disappeared and overall he's doing great. After the one night where he threw up 6 times, we're not doing that anymore! woohoo! Nights are going fine, and we've had two days of short naps (1 hour, and 2 hours) which isn't fun, but I'm hopeful we'll get back to longer ones soon.

Height and Weight: As of August 30th, he was 30 3/4 inches and 21 1/3 pounds. His height really hasn't changed much in months and months. But he's gaining weight!

Meals: Charlie is eating three meals a day (about 4 oz. maximum at a time)- breakfast is yogurt, and for lunch and dinner he mostly has purees. He hates chunks and other foods he eats SOOO little of it doesn't count for anything. He'll eat a teeny bite- maybe up to 5 teeny bites during a meal of things like: hotdog, Chik-fil-a nuggets, cheese, cheerios, cheezits, veggie straws, toast with butter, and mac and cheese. And he may or may not choke on a piece and gag and then throw up all the 5 bites. He drinks vital jr./pediasure peptide (the name just changed) and he also gets it in his gtube overnight- 608 mL's over 8 hours. He loves water and always tries to get us to give him some of ours. Also, any "real" food is given at the beginning of the meal so that if he throws up, he only lost a few calories. So after a whole meal, there is no dessert, because we're afraid he'll choke on that and throw everything up.

Medicine: Charlie gets miralax daily (1/4 capful) with 2 oz. of pear juice which I put through the tube. We also just switched to Nexium which is a once a day reflux medicine. It's only been about 4 days now on that. Before he took prilosec. Also recently we tried adding reglan before meals for 1 month to see if it helped the throwing up, but it didn't and Charlie was a bear to be around (side effect) so we stopped that a few weeks ago now.

Throwing up: Charlie throws up about once a day. All different ways: wakes up in the morning and throws up in his crib; wakes up in the morning, hangs out with us for 1-2 hours and throws up out of the blue (sometimes while watching TV in OUR bed- ugh!); during a meal he'll gag and then throw up all that he's eaten; at the end of a meal because he's too full; in the car seat not anytime remotely near eating; or my new favorite- gets himself so worked up he's crying so hard that he throws up. And of course, the sticking-his-hand-down-his-throat-to-throw-up-because-he's-mad-we-took-away-the-paci.

Sleeping: Charlie goes to bed usually between 7:30 and 8 unless he napped poorly and then it's earlier. he wakes up between 6 and 7. Last week I could count on him to nap for about 3 hours (if not longer) and I put him down between 12 and 1.

G-tube: Charlie gets all his medicine this way. During the day if he throws up more than once or twice in one meal, I will gavage him some formula. Then overnight we put him to sleep with his extension chord "plugged in" and tucked in the back of his pants, and we wait for him to fall asleep before we start the feed. He gets less tangled in the wires that way. We've been taping the connections shut because of incidents of the connection coming undone and formula ALL over the bed. We also check him 2-3 more times before we go to bed to make sure the feed is working, he's not tangled up, and there is no leak on the bed. I recently set the alarm on the pump to go off when the feed is done (around 4-5am) so that I can unhook him then. I found that he'll sleep longer if he's unhooked while he's still in a deep sleep. If we just leave him attached to the lines, as he wakes up a little and starts moving, he'll get tangled, and he'll wake up for real. We were having 5:15 and 5:30 wake up calls, which is unacceptable. Mama needs her sleep!

Delays: Charlie had a mini- informal evaluation with our early intervention this week, and we found out any delays he currently have are less than 25% (the magic number). If he weren't born prematurely and IUGR, he would no longer qualify for services. Wow! But, no worries, everything will stay the same for now.

Medicaid: Just a few days ago we found out that Charlie has been approved for medicaid coverage for another year! woohoo!

Getting rid of the pacifier and other adventures

2011-09-06T14:01:00.000-04:00

We used to love these soothie pacifiers. They got us through months when Charlie would scream and scream unless he had one in his mouth. Charlie's had teeth for one full year now and I've thought on and off about how and when to get rid of them, and I've put it off and put it off. For months now, he's only ever had them in his crib. But, for the last month or more now, he's been biting off the top inch of the pacifier (hello, choking hazard), so it's past due for us to deal with this situation. So we decided to take them away completely, starting this past Sunday night.

Night #1: Lots of crying and yelling "mama" and "dada" but eventually he fell asleep around 10pm.

Monday nap time didn't happen because of baseball game, though he slept in the car for about 10 minutes.

Night #2: Cried so hard he threw up (By the way, this was expected- we put down towels on the floor, because usually he'll throw up over the side of the crib, if he's going to at all). We went in and cleaned things up. A few minutes later with more crying and gagging I peak through the door to see him with his hand down his throat to make himself throw up, so that we would come in to him. After he made himself throw up 6 times, and us changing the sheets twice and changing his clothes once, we decided we needed to leave him covered in throw up or else the game wouldn't end. So he eventually fell asleep and at 10:30 we took the sleeping kiddo out of the crib, cleaned everything up, and changed his clothes again while he slept. Ugh ugh ugh! What a terrible night. Good news is this afternoon's nap is going well. He cried for less than 10 minutes, and I don't think he made himself throw up at all. He's sleeping now, and hopefully he'll sleep as long as he used to (3+ hours). I sure hope last night was the worst of it!

Other adventures:

Got to see some college friends + kiddos this weekend. It's still hard for me to believe 4 of us have children!

Labor Day brought the end of our local team's baseball season. I hope Charlie likes football, because I don't know what we'll do without baseball in this house!

This big pile of dirt was delivered to us last week, and Charlie went right over to it, turned around, and said "cheese!" So I had to get my camera and take a picture. :)

Proof!

2011-08-30T19:58:00.000-04:00

I love you too, Charlie!

I "ove" dada

2011-08-28T19:36:00.000-04:00

Hurricane Irene is in the rear view mirror now, and I have to say, we were very lucky! We didn't even lose our power, which we lose all the time in minor thunderstorms. Charlie's grandparents down the road always have power when we don't, but they've been without it for almost 36 hours now. We spent a great deal of time eating all our ice cream these last few days assuming we'd be out of power for days. So today we bought more at the store. ;) We lost 1 large-ish branch off of a big pine tree, a few medium-ish branches, and a thousand little twigs and pine cones. We spent some time this afternoon cleaning up our yard, and we spent the morning helping Charlie's great grandparents clean up their huge backyard. Our neighbors lost siding off their house, but all in all Irene was very nice to us. A huge thanks to Dominion Virginia Power for being nice to us this time. Don't know what you did, but we appreciate having our power through the whole storm.

Charlie checking facebook to see what everyone was doing during the storm

Charlie watching Elmo on TV. We let him watch a lot of TV in the morning Saturday assuming "any minute" the power would go out indefinitely.

In other news, tonight Charlie said his first sentence! He's not doing great with 2 word phrases, so it was especially exciting to hear out of the blue "I...pause...ove(love)...pause...dada!" We play a game where we try to get him to repeat after us one word at a time I love mama/dada. Usually the game goes:

Me: Say "I"

Charlie: I

Me: "Love"

Charlie: yells dada or nana or someone other than me, while skipping the repeating "love"

So tonight this sentence was very exciting. Especially for Dave, who thinks Charlie loves him more already.

On Thursday we met up with some NICU friends at a inflatable bounce house place. Charlie was afraid of the bouncy things but he did enjoy the other toys. It was great to see old friends! (We've known them now for over 2 years, so they are old friends!)

Irene

2011-08-26T16:49:00.000-04:00

Well, in 24 hours the hurricane should be right at our front door, though I don't think the eye come over us anymore. Yesterday it looked like it would be, but the track has changed slightly. We have food, water, and batteries. We're moving everything "fly-able" into our garage tonight. I've been eating frozen food and ice cream so we don't lose it WHEN the power goes out. The question is just how long it will be out for. I really hope it's just a day or 2, but that would be really lucky.

Relatives think we're nuts to stay. I might just be in agreement with them.

Charlie will positively go nuts when he can't watch Elmo. Yikes! Wish us- and our property- luck!

We've experienced a Nor'Easter and some big snow since we've lived here, but this is my first hurricane.

The baby giraffe

2011-08-21T19:00:00.000-04:00

So remember the baby giraffe that we recently met during the zoo breakfast? Unfortunately today I found out that he died. This is very upsetting to me! How terrible is that?

According to the paper, he died from "peritonitis, which is an inflammation of the stomach lining. The inflammation is caused by a bacterial or fungal infection."

I hope the giraffe parents will be ok.

More on Throw Up becuase I haven't covered it enough recently

2011-08-17T20:39:00.001-04:00

Today in the lobby of the aquarium while we were checking in, Charlie threw up. It was just me and Charlie, and I was holding him in my arms. He started to do the throw-up-cough thing that happens right before he throws up, and I didn't have time to say more than "uh, uh I think he's going to throw up" before there was throw up in my hands and across the lobby carpet. We ran to the bathroom where he threw up more on the floor in there and a little in the sink. Meanwhile, my wallet and ID were sitting on the counter with the lovely young lady who was probably very confused/grossed out.

This may very well be the first time Charlie has thrown up like this in public when he wasn't eating. It was incredibly embarrassing. Luckily my ID and wallet were waiting for me when we got back.

Ugh Ugh Ugh! I don't know what I'd give these days to the person who could solve this mystery of the vomit. Lots of money? My eye teeth? My first born? Well, really you can only have the first born if you CAN'T solve the problem. Because if he's puke free, I am going to want to keep him!

August 13

2011-08-15T08:00:00.000-04:00

August 13 came and went Saturday with us being very busy! Between zoo trip and a wedding in the evening, we didn't even really take a minute to acknowledge that it was Charlie's adjusted 2nd birthday! August 13 was our due date in 2009, but obviously Charlie arrived 10 weeks early. In 2009 I was sure the arrival of this day would mean that Charlie would be home very soon, little did I know at the time it would be 6 more weeks before he would come home! That memory is fading these days with Toddler Charlie literally doing laps around the house, playing golf, and telling us "no no no" to whatever he doesn't want to do.

Zoo Breakfast

2011-08-14T21:28:00.000-04:00

Late Friday evening after Charlie was in bed, I got an email from a friend inviting us to breakfast at the zoo early Saturday morning. So there was breakfast for us, then there was a schedule of animal feedings. So cool! We got to see giraffes (gir-ahhh Charlie says), elephants (el-pahn Charlie says), and prairie dogs get breakfast.

That's Charlie plastered to the glass, probably licking it.

Look through the cage- that's the new, less than 3 week old, 6 foot baby giraffe (and Charlie's hand on the glass in the front of the picture)

Elephant eating bamboo, and the "zookeeper" at the bottom talking to all of us who were watching

Prairie dogs apparently eat carrots, cucumbers, sweet potatoes, bits of a cereal looking grain thing, strawberries, grapes, watermelon, and more!

Bee Bah

2011-08-12T21:10:00.000-04:00

Charlie picked up some new words this week at the beach! Like "Bee Bah" =beach ball, "poo"= pool, and ice= ice. He's also working hard on his jumping ("ump!"), but hasn't yet mastered it. He's also patting us on the back now if we are holding him and patting him on the back. :)

Not a huge fan of the actual ocean, but preferred a private pool in the sand. Good thing for an uncle and a few first-cousins-once-removed for pool construction and maintenance! :)

Charlie got to hang out with a lot of people this week. In fact, Dave ended up surprising us and coming back down Wednesday night and stayed all day Thursday. He was obviously jealous of all the fun we were having and couldn't stand to be at work! :)

Over the course of the full week Charlie got to hang out with 2 grandparents, 2 uncles, 5 great aunt/uncles, 2 great grandparents, 1 second cousin, 7 first cousins-once-removed, and one cousin-once-removed-in-law. Whew! The house was huge, but not huge enough to have all these people there at the same time. We had a few days with different families which was great! Also, I looked up what 2nd cousins are so my terminology is correct. Except cousin-once-removed-in-law. That I made up.

There go some "peep peeps!" (aka birds)

We also got together with 2 different friends and their children. Busy busy!

But for once, not busy with any doctor's appointments or therapy appointments! Crazy huh? I don't think we've had one week completely free of appointments ever- except maybe the week of Christmas or Thanksgiving or something like that.

Addie (second cousin) and Charlie

Charlie with one great aunt and two great grandparents, helping to blow out Papa's birthday candles

Charlie hanging out with Caroline and Mary Fran, first cousins-once-removed

These cousins were so good to him on this trip. Caroline even tried to help teach Charlie to eat grapes by showing him how to chew them. He did put the grape in his mouth a few times and he did bite it a few time, but he never attempted to swallow. I often wonder if he had a constant kid around to model eating, if that would help. He doesn't seem to care too much about our eating, but there were a few occasions where I felt he was paying attention to the kids.

What a wonderful vacation! Back now to real life!

OBX beach time!

2011-08-10T08:23:00.000-04:00

Since we don't get enough beach time at home, Charlie and I are in the Outer Banks this week with family. Dave is at home working, and hopefully doing lots of yard work and housework so we will return to a beautiful house. yeah right.

Charlie is loving these binoculars. He picks them up, (mostly looks out the wrong end), and says "peep peep" which means "birds". Even if he's not looking out the window he says "peep peep". Pretty cute.

I got to catch up with an old friend I haven't seen in maybe 8 years except on facebook because her family is down here vacationing now too. How cool is that? Her 3 year old cutie pie called me "Charlie Mommy". That made him even cuter! :)

Credit for really cool photo: Workaholic Momma. :)

Water!

2011-08-03T20:52:00.000-04:00

First time Charlie's really picked up the hose and wanted to play in the water. Usually he plays with the watering can, but not last night!

Our family vacation

2011-07-31T22:07:00.000-04:00

Only family picture from our vacation, at the Nats game.

Charlie, Dave and I went on our first family vacation this past weekend. We've been to visit family and we've been on trips with extended family, but this was our first "just the three of us" time away. Turns out 3 days is a great length vacation for a 2 year old, which is great since three days was the most I could get from Dave.

We (meaning I) decided Washington, DC would be a great place to go since we only had 3 days, and it's not too far away. We stayed in a Marriott hotel with Dave's points from his many work trips and got a room with a living room, kitchen, and bedroom with a door that closed to the rest of the suite. (Perfect hotel room situation for a kiddo who needs naps and early bedtimes.)

So we got to see 3 sets of friends, 1 cousin, meet one new baby and one new puppy. We also saw the zoo, the Natural History museum, and a Nationals baseball game. Charlie got to ride "the train" (metro) a few times, and he enjoyed saying "choo choo" a lot. On the way home today we stopped at the Richmond Children's Museum.

Awesome water feature outside our hotel

Zoo!!!!

Here Charlie is telling us that the panda bear is going "night night". He is in fact sleeping, not dead despite the uncomfortable looking pose.

Charlie asleep on the metro after the zoo around noon. Nap time!

Museum of Natural History- dinosaurs!

The Natural History museum's elephant!

10pm returning from the Nats game. WAY past Charlie's bedtime!

Richmond Children's Museum: don't you love his hands on top of the cutout?

Charlie loves to drive! "Vroom vroom!"

This was a fun one when Charlie figured out how to put the eggs in the top and how to get them to drop down the shoots.

Bone Age

2011-07-31T21:01:00.000-04:00

Literally right before we left for vacation, we got a call from the wonderful new endocrinologist who let us know Charlie's bone age is 15 months. (His actual age is just shy of 26 months.) So, this is good news for his growth. If you put his height on the chart for a 15 month old, he's actually on the chart. Wow! Essentially, there's plenty of time for catch up, and no need to discuss growth hormone yet.

We will see her again in 3 months, but she doesn't do the bone age x-rays more than once a year.

New Endocrin

2011-07-27T22:01:00.001-04:00

We saw a new doctor today that I really liked. We previously saw an endocrinologist twice, and I really didn't like him very much. They were two really quick appointments with not a lot of conversation and in the end "we'll have to wait and see." So no plan. Then someone suggested "go to a new endocrinologist." Sounds easy right? Well, sounded great to me so I called and said I wanted to change. Who knew that was like almost the worst thing, most impossible to ask for? Apparently it's breaking all sorts of rules to ask to see a new doctor in the same group. (P.S. There is no other "group" of endocrinologists that Charlie could see- just the one children's hospital.) After two conversations with the one person who could orchestrate a change, I finally had to have Dave call. Because apparently they weren't taking ME seriously!

Well today's appointment was wonderful. We chatted for a nice long time, I wasn't rushed, and she sat on the floor (in a dress) to examine Charlie who was sitting on the floor. Charlie was over 21 lbs today and about 30 1/2 inches tall. They take measurements very seriously there, which of course, I appreciated. We've noticed his weight is really on a great rise since the gtube, but his height isn't making the same change upwards. His weight gain is on a new curve but his height growth is really on the same curve as before the gtube. Interesting.

Looks like Charlie will qualify for growth hormone because he was SGA (small for gestational age) and hasn't caught up by age 2. We did a bone scan of his hand to figure out what age his bones are. She is quite sure his bones are "younger" than his chronological age, which means there is more time for him to catch up. We may have a lot of time before we have to decide if we want him to have growth hormone, so that's good!

Even better, I have found a good doc who I like!

Hi Dada!

2011-07-26T15:34:00.000-04:00

Charlie is skyping with Dada who was in Pittsburgh during this call. He usually skypes from the Virgin Islands.

Ellen R.- don't know if you still read this blog, but here Charlie is enjoying one of the books you got him at my baby shower. It's one of his favorites!

Even in his old age, he's STILL helping me with the laundry!

This is from last week when Preston visited. They look like they're chatting at a bar if you ask me. :)

Staying busy

2011-07-21T19:57:00.000-04:00

Dave has been out of town this week, will be home for about a day (Saturday), then gone again for another week. So we've been trying to keep busy and survive this crazy heat.

What we've been up to:
Playdate with Preston! woohoo!
Music class
Feeding therapy
speech therapy
errands
Chick-Fil-A mommies group playdate
making chicken potpie ala my Dad's recipe
minor league baseball game
doctor's appointment- of course because it wouldn't be a week in the life of Charlie without someone needing to see him.

Exciting news on two fronts: He was up to 20 lbs 12 oz. on the "big boy" stand up scale! And we don't need to be seen for 2 years! Yay! This was a follow-up from the hypospadius repair surgery at the end of March. Luckily the doctor was happy with everything! woohoo!

Perspective

2011-07-20T22:25:00.000-04:00

Hello fans. Charlie says "hi," (in the cutest way.) I should really post a video of him saying hi sometime soon.

We had a whirlwind weekend - Charlie stayed in town with Nana and "Kuh" (as he calls him) aka Coach. Dave and I attended my cousin's awesome wedding Friday night, and went on to do more wedding celebrating the rest of the weekend. My friend Sada got married in April in California and she had a party in our hometown this weekend to celebrate with East Coasters. Jen and Brad and baby Connor flew in and I got to see them for the second time in less than a month- more awesomeness.

Connor and the girls, who are still hot stuff at 30. woohoo!
P.S. Allison- yes, I know you aren't yet 30. But you're practically there so I don't want to hear it.

Seeing Connor was a lot of fun, but it was sad Charlie wasn't there to play with him. He would have been really excited to see "baby" again, but we couldn't make it work to bring him on this trip.

So about perspective. Forgive me if I've already posted this story, but once in the NICU I saw a new baby that had just been admitted. I had been around at last a month maybe two at this point. Anyway, when I viewed this baby I was horrified by how huge he was. Absolutely horrified. I was SURE he was at least 15 lbs. I thought to myself "well, obviously he's here in the NICU because something is wrong and that caused him to be horribly huge. His poor parents! Later I overheard a nurse say that he was 7 lbs exactly. So obviously my being around 2 pounders really screwed my perspective.

I was surprised when visiting Connor how teeny he seemed (even though at 2 months he was in the 10 pound range- what a nice healthy full-termer!) He was so light compared to my 2 year old, he has a small baby head (different than the 2 year old head I see daily), and he seemed so infant like. I thought perhaps I outgrew that screwy perspective of babies.

I was reminded tonight about the NICU perspective when I got to meet an old coworker of Dave's preemie son. He is about 3 months old and just under 7 lbs- about half of what Connor was this weekend- which I am finding hard to believe as I type this. Meeting Collin and seeing his skinny legs and tiny frame brought back so many memories of Charlie that have really faded. Interestingly, Collin is also the size of that massively huge infant I was worried about in the NICU. But really, I had forgotten how tiny 7 lbs is- let alone 5 lbs, or 2 pounds. How quickly time has gone by. How quickly I have forgotten. Talking with his mom about the 3 hour round-the-clock feeding schedules reminds me of how close to loosing it I was every day by about 6pm when Dave would walk in the door. More than one time I turned Charlie over and hid under the covers by myself for a while. Collin's mommy doesn't have that "luxury" as Collin's Daddy is overseas right now. Caring for any infant who gets up through the night is tough. Caring for an infant that can't go to restaurants or parks or malls and only gets to go "out" to the doctor's is even harder. And to do that by yourself seems to me near impossible. So Laura, if you're reading this I'm sending a prayer up tonight that you will have all the strength that you need and that slowly and surely Collin will give you more and more of the sleep you need too.

Seeing this teeny tiny (and by the way impossibly cute) baby tonight reminded me of how far we've come- both me and Charlie. Me- I get a FULL night's sleep now, even though I like to complain about the 5:30am wake up call, and Charlie is an awesome toddler, full of personality, able to do so much on his own now, and definitely not a baby anymore! I'm thankful that tonight I was given the opportunity to step back and see how far we've come. I guess it's hard to see when you're in it sometimes. I'm going to try to worry less about when Charlie will jump, or put words together into a sentence, or even hold his own spoon (with the intention to use it to eat), and just be thankful that he's here and for all the ways that he's grown.

What's up?

2011-07-12T12:57:00.000-04:00

1. Charlie likes to hug a lot. He comes at you and says "hug" in his growly voice. He hugs my legs a lot, you saw him hug the cow in the last post, and today I saw him hug the gate at the top of the steps.

2. He is really really really obsessed with sports. We found that the best way to distract him during meals is to show him 2011 Master's final round highlights on youtube. I hate golf. But whatever it takes. Everything is a bat, he is constantly walking around with this golf club (and swinging it) and watch out if I try to hide it from him for a while!

3. He frequently breaks out into song - but you really have to be paying attention if you want to figure out what the song is. The one most easily recognizable is "la la la la la la Elmo" which is the theme song for Elmo's world.

4. "Kickey" aka Mickey Mouse is his new best friend. He has two.

How many balls can one child have in a pool at one time?

When we went on our trip last month, we took the basketball and net with us. Luckily Uncle Brad was willing to play.

How often do you get to hug a cow?

2011-07-09T21:33:00.000-04:00

So Charlie got to go to his friend Caleb's 2nd birthday party today. And he got to hug a cow. The Teeny Tiny Farm was there. Funny thing, we've attended only two 2nd birthday parties this year. Both of them had the Teeny Tiny Farm. :) It was great to catch up with this NICU buddy, although I always find myself wishing for more time! Visits go too fast!

Dave and I also had a wedding yesterday of some good friends from college. Apparently, given the right circumstances I can still manage to get myself dressed up. :) We had a great time celebrating Matt and Shannon's special day, and Charlie had a great time with his Nana and Coach.

Happy 4th of July everyone!

2011-07-04T12:55:00.000-04:00

We've had a busy weekend! Baseball, and cookouts, and the aquarium, and the park, and even the beach!

Charlie LOVES baseball. Isn't this the cutest baseball cap you've ever seen?

We finally got the sandbox which was a birthday present from Grandpa Jim. He gave us cash to buy it instead of us having to haul it back from PA, and it took a whole month for us to actually find the time to get it! Charlie wasn't interested in climbing in though.

The beach wasn't great for Charlie this time. He accidentally put a sandy hand in his mouth and gagged and gagged til he threw up. And he kept throwing up til we gave him some water to drink. Then he melted down because we took the water away so he wouldn't get sand in that! He wanted nothing to do with the ocean, and only visited Daddy's big hole in the sand briefly.

Charlie preferred to sit in "his"chair stirring the ocean water Daddy brought him.

Daddy trying to console upset Charlie. Perhaps he thought the ocean would take him away?

If you look closely you may be able to tell Charlie is very upset because Daddy is trying to take him in the water.

Hearing

2011-06-29T21:36:00.000-04:00

Well, unfortunately we have big news, that's not good news, or fun news.

Charlie had an appointment with a new specialist- an ENT- due to his hearing test at the beginning of the month detecting hearing loss in his right ear. Unfortunately (I think) there was no fluid in the ear so giving him ear tubes won't fix this hearing problem. The hearing loss is considered "moderate." They are recommending we get a hearing aid. :(

We will be going for another hearing test done by two audiologists in a few weeks and then from there we will start the process of getting the hearing aid.

There is a chance that the problem could be something that could be surgically fixed down the line - like when he's 7 or older, but we wouldn't know that without a CT scan, which there is no reason to do until he's older. There's also a chance that this is something he was born with. I mentioned that we believe he has Russell Silver Syndrome, and the doctor became very interested suddenly. He said if Charlie indeed has a "syndrome" then the chances that the hearing loss is something he was born with is higher.

Apparently the earlier you get a hearing aid with a child that needs it, the easier it is for them. I'm sure telling a 6 year old who just started school that HE needs to suddenly start wearing one would be tough, but I'm also sure sticking it in a 2 year old's ear isn't going to be pleasant either.

I keep telling myself that this isn't a big deal- plenty of people have hearing loss, and thankfully there is something we can do to help him -even if it's pricey. And on the other hand, I'm just so stinkin' mad that Charlie has one more thing to worry about. He deserves a break people!

The ENT's scale said Charlie was 20 lbs, 4 oz. WOAH! We have a GI appointment tomorrow so I'll be curious to hear if his weight is really that high. (That would be 1 1/4 pounds gained in less than 1 month!)

This saga is obviously going to continue. So, stay tuned followers to "hear" more on this story! hahahaha. I crack myself up.

Trip to Louisville

2011-06-28T21:56:00.000-04:00

What a trip! Charlie and I left last Thursday morning really early and we returned Monday evening really late. We had such a good time seeing these folks below, but I seriously wish an airplane wasn't necessary to get there. Baby Connor is such a cutie (and the absolute best baby ever), and today Charlie has been going around saying "Baby?" and shrugging his shoulders as if to say "where is he?"

These boys apparently have many outfits in common, and this day they were dressed alike unknowingly!

Start at the beginning: On the plane Charlie demanded the US Airways magazine to read and sips of water (the biggest treat in the world for him as he doesn't get it normally due to it's lack of calories)

This is what it looks like when the wheely thing is attached to the carseat for traveling through the airport. I highly recommend it. It was soooo helpful for a toddler who you can't trust to stay with you.

Friday we spent the day catching up on good naps, holding the baby, visiting the park and getting ice cream. Oh yeah, and throwing up. Charlie unfortunately did not take a vacation from throwing up, and our nightly feeding hook-up with the pump also didn't take a vacation from flooding the bed with formula (that happened two out of the four nights). But we had fun anyway!

Connor and Charlie ready for a walk in the park.

Anyone who lays down on the floor turns into a horsey these days! Brad was very accommodating. ;)

Saturday we went to the Louisville zoo, which is really nice. The weather was perfect, and we saw lots of animals, including two bears running around playing and a monkey who was killing a bird right in front of us (I hope Charlie wasn't scarred.) Charlie got to break out a lot of his animal noises. He's now doing lion, bird, duck, monkey, and an attempt at an elephant. Though we didn't see barnyard animals he also is now doing cow, pig, and sheep too!

I sat in the middle of the back seat on the way to the zoo and this was my view to the left.

And my view to the right! :)

Me, Charlie and two elephants in their swimming pool!

By far, Charlie's favorite animal is a duck. Ack Ack Ack he says!

He climbed all over this guy before I posed him for a picture.

Connor also let Charlie play with his water table, which was a huge hit. Aren't these crocs cute?

Sunday we got to go swimming even though it wasn't very warm. Charlie was not happy about it for about 10 seconds, then he loved it. Jen took some pictures, and hopefully I can post those later.

Charlie was really good with Connor, thank goodness. He didn't mind me holding him at all, and he loved to show Connor all the toys. Before we left, he even leaned in without me saying anything, and gave Connor a hug. Love it!

Charlie enjoyed Connor's collection of book and puzzles and even played a little basketball with our little ball and net that I took along. Thanks Uncle Brad again for playing too! What a treat this trip was- lots of good food and great company. :) Jen took a ton of other great pictures, but I can't get them uploaded here yet. Hopefully I'll post more another time.

Our trip home was slightly not fun. We got delayed an extra hour at National Airport (which was cramped and so full of people there was no where to sit), and the last leg involved us getting on a bus to get to the plane. And then I had to lug a carseat and child up the steps of the plane with no help from the flight attendant who was standing right there staring at me. I even asked for his help. Still didn't get it. I have to say though, out of the 7 flight attendants we had contact with during our trip, 5 out of the 7 went way out of their way to help us. And the other one was just friendly, not over-the-top-helpful, so this last guy was a disappointment. Overall with the plane rides, Charlie whined and cried a little, mostly asking to get "up" out of his carseat, and he didn't fall asleep for 3 out of 4 flights. The last one was after his bed time, after dark, and he hadn't napped, so I finally caught a break there. Glad we did it, not interested in flying again with Charlie for quite a while. ;)

Charlie's First Flight

2011-06-26T11:15:00.000-04:00

Charlie and I got on a plane VERY early on Thursday morning to visit friends in Indiana and their new baby Connor. This flight was actually two since there was a connection. At first everything went well. We made it to the airport with plenty of (but not too much) time. I bought wheels we attached to the carseat to travel through the airport, which I love! We made it through security with our medicine, formula and food in quantities way bigger than 3 oz with no problem. We "pre-board" the plane with help from two friendly flight attendants and we get situated with no problem. Lovely! I'm thrilled things are going smoothly. THEN it happens. The OLD lady who had the window seat in our row shows up. Charlie and I had the middle and aisle seats, but apparently a carseat must be at the window and the flight attendants told me the person in that seat would have to take the aisle instead. Except she was having none of this seat changing business. I called over the flight attendant to tell her what she said about needing to take the aisle because of the carseat, and in the end, Charlie and I had to move our seats upsetting 3 other people just so this first OLD lady could have her originally assigned window seat. Of course this also happened while boarding so we held up the aisle for quite a while moving our things, moving Charlie, then unbuckling the carseat and rebuckling it in the next row. All the while, Charlie is SCREAMING because he's mad the flight attendant is holding him. Needless to say, he sat right behind the OLD lady, and I didn't once tell him to stop kicking her seat.

Charlotte is a lovely airport. I know this because our second flight got cancelled so we had a whole extra 3 hours before the next flight out. This was a major pain but luckily Charlie chose that opportunity to sleep for over an hour in his carseat with wheels.

We finally made it and are having a lovely time visiting. I have lots of pictures to share once we get home (Monday evening).

A look back

2011-06-21T13:10:00.000-04:00

So just two short Father's Days ago Dave got to hold Charlie for the first time! Who would have thought that now he'd be yelling for "Bah-Ball!" (basketball) everytime Daddy comes in the room. (Apparently he's learned Mommy's not so interested in shooting balls all day long, so he (mostly) reserves it for Daddy.)

Charlie and I are going to be getting on an airplane on Thursday morning to go visit Jen and Brad and new baby Connor. I'm getting increasingly nervous for the trip and doing it by myself (with connections both ways), but I'm looking forward to seeing friends!

Pictures

2011-06-18T08:40:00.000-04:00

Charlie and I checked out the local zoo this week!

What? Is it strange to tear apart the living room, then climb in a bucket?

I'm ready to go boating!

2 year check up

2011-06-09T21:10:00.000-04:00

So Tuesday we went for our two-year check. Our pediatrician gives a book at each well-baby check. Except for Charlie. Charlie, the frequent flyer at the doctor's, gets books whenever Millie is the nurse. While this is super nice of her, he still was extremely upset to just lay eyes on her. Charlie's least favorite part of doctor visits are height and weight checks. I have no idea why, as this seems to not be a big deal to me, and it happens pretty much weekly for him!

He was a whole 19 lbs and 31.5" tall. I have my doubts about the height- I think it might be a little high, but I'm very happy to see the 2 lb weight gain in the two months since he got his g-tube. He only got one shot, but he also had a finger-prick for a lead test.

We discussed the big issue of the day as we've done before- the constant throwing up. Of late, Charlie throws up every time we feed him by mouth. He doesn't throw up with tube feeding though. Anyway, the pediatrician requested an x-ray, which we've done quite a few times before, but we did again. Turns out she said he was full of poop, so we're trying to remedy that, and see if the throwing up subsides. (I have my doubts, but I sure would love for that to be the problem!)

In other news, Charlie had a hearing test back in May at the suggestion of the developmental pediatrician that we see at the NICU follow-up clinic. This was a "normal" follow-up thing, and we don't suspect hearing loss, and he passed his newborn hearing screening. In May the audiologist was able to confirm his left ear was normal, but the right ear was inconclusive. So today we had to go at a time when there were two audiologists present. They figured they'd have a better shot at getting his necessary participation and the results they needed with two people. Luckily, Charlie was great and participated as requested. And turns out we have a problem. We need another problem like we need a hole in the head, right? We will be seeing an ENT at the end of the month because he has hearing loss in the right ear. Apparently normal is being able to hear 20 decibels, but in the right ear, Charlie can't hear anything softer than 40 decibels. So this is either considered mild or moderate (I'm not too sure) hearing loss. There's a chance there's some situation in the middle ear- like fluid- that could be fixed. When they tested his inner ear- which apparently bypasses the middle ear, he could hear 25 decibels which is much better. So perhaps there is something that can be fixed. They also said the eardrum did not vibrate the way they wanted it to. Perhaps down the road he'll need a hearing aid, but that's not the case now. So all in all, we'll see a doctor in a few weeks, and it looks like we'll be going back for many more of these hearing tests because they will want to make sure it doesn't get worse over time. And the thing that kills me is I still don't believe by watching him and talking to him that there is any problem what-so-ever. Oh well.

Luckily, a hearing test does not require height and weight check, so Charlie is happy.

Thanks Uncle Ryan and Uncle Chunky, I love my ball!

I'm very good at dunking!

Birthday Weekend!

2011-06-06T22:28:00.002-04:00

What a weekend!

We started the birthday weekend with going to music class on Thursday morning with Daddy for the first time ever! Then we left for PA right from music. Friday we spent at my dad's where I managed to get zero pictures. Saturday was the big day- birthday AND a summer-Olympic-games reunion of my mom's side of the family. 26 people and maybe 2 athletes among them. It started with 24 people playing miniature golf and Charlie went along. He got a toddler-club and spent the entire time picking up people's balls and putting them in the holes. :)

Today's my birthday??

ELMO pillow! Yippee!

Do you sense a theme yet?

The birthday boy with his mom and dad

There was a lot of music throughout the weekend!

Cousin Annie planning an attack. (She pushed Charlie down twice on his BIRTHDAY! And Charlie cried and cried. This happened even though Dave told Charlie to push her down and sit on her. Can't you feel the love?)

Happy Boy!

A trip to PA wouldn't be complete without visiting our NICU buddy Dalton. We also got to meet his baby brother!

Happy 2nd Birthday Charlie!

2011-06-04T06:00:00.007-04:00

We have made it yet another year! Can you believe it?? We are celebrating this birthday in PA with my family this year, and things are quite busy. But I wanted to share just a small sliver of what this year has been for us. Also, I think it's a good time to read what I wrote last year about that fateful day June 4, 2009.

I calculate our weight gain for this past year to be approximately 5 1/2 pounds (2 pounds being in the last 2 months). Charlie has also grown about 6 inches this year. I'll say for sure on Tuesday at his 2 year check-up, but my guess is he's just shy of 19 lbs and just shy of 30" currently.

This year Charlie has had:

2 hypospadius repair surgeries
G-tube placement
endoscopy and colonoscopy
gastric emptying test
Upper GI
pH probe (and overnight hospital stay)
Approximately 175 hours of therapy (feeding, occupational, physical, speech and "pre-school")
Too many doctor's appointments to count (But a fair estimate is maybe 75?)
Charlie *just* started crawling this time last year and he spent 6 months crawling. He learned how to climb up and down stairs, and today he actually walked down two wide, short stairs all by himself without holding on to anything! He started walking in January and has been running for weeks and weeks now.

Charlie's speech has grown immensely in the last month or so, with his newest words being "baby" and "hug" this week. He has a whole long list (of maybe 30?) words now and about 20 signs.

He loves balls and books and the outside. He now has 12 teeth, and I think his eye teeth are going to be showing themselves shortly. This year Charlie has discovered Elmo and Cookie Monster and TV in general. He says "Elmo, Cookie, and "Anny" (for Handy Manny). I've also taught him to say "Oprah" which he does rather well.

I'd talk about what he's eating these days, but I'd rather end on a happy note. ;)

I've got an incredibly happy kid (whenever he's not eating), who I am so happy to know. This lucky mama is celebrating with a big piece of Elmo cake today!

Hot Hot Hot!

2011-05-31T16:25:00.000-04:00

We've had quite a few HOT days now. Like, in the 90s and the heat index is over 100. AND IT'S STILL MAY! Yippee for the rest of summer. Good news is (so far) our AC is working. Last year we had repair calls on it about 5 times. Bad news is, we are currently awaiting a refrigerator repair man (the defrost is broken making the freezer really cold and not allowing the air to circulate to the frig), a repairman for our well pump (Dave left it out all winter and it cracked, breaking it), and a siding repair guy to fix some of the storm damage from last Tuesday.

But let's talk about more pleasant things.

Another busy weekend! First we went to the mall and had some pictures taken. Charlie will be 2 on Saturday! They turned out great! Then we ate in the food court at Chik-Fil-A. Charlie really enjoyed the cow.

Look, she's dancing! Can I dance too? (He did go up and dance with her!)

In the heat of the late afternoon, we went to the Strawberry Festival! Woohoo! I had a strawberry taco! Charlie watched the ferris wheel from a distance.

And they had farm animals! Right up my alley!

Sunday we hung out with grandparents and great-grandparents and had a picnic!

Monday was about some impromptu crab eatin'!

And empty-swimming-pool swimmin'! :)

Happy Memorial Day weekend!

Our busy May

2011-05-27T22:26:00.001-04:00

Our schedule has been pretty busy this month! Charlie is still/again taking two naps a day. And we added in all this:

On Mondays, Charlie and I went to the Early Intervention program's "preschool" class from 10- 11:30.

On Tuesdays and Wednesdays we went to Feeding Therapy.

On Thursdays we went to our Music Together class. (LOVE!)

On Fridays we had swimming lessons, through the Early Intervention class.

We also had 2 visits from the speech therapist, and we'll have 3 total visits from the developmental specialist by May 31.

When did you fit in doctor's appointments you may wonder? We actually had 4 appointments for Charlie, and one for me this month. For the first time, I actually cancelled two additional doctor's appointments with specialists (gasp!) One at the beginning of the month was the day after another specialist (and each one always recommends the opposite course of action from the other. I wanted to give one course of action a try!) Then I cancelled another one- gasp!- because we would have had to miss a swimming class. I have started to realize that if Charlie remembers this time in his life, it will be little fun, and lots of appointments- with therapists and doctors. And he needs to have fun. He needs to be excited about getting in the car without thinking he's going somewhere to be weighed (not fun, if you ask him!) and poked. So we went to all four of our swimming classes!

Seems a lot older (if not bigger) than last year, doesn't he?

While I never thought I wanted to be a stay-at-home mom (and I still wonder if I want to be- it is harder than any of my previous jobs!), I am so thankful that I am able to be with Charlie because we are able to go to preschool, and therapies, and yes, even the fun things too. Charlie would miss out on all this otherwise!

$1,342.72

2011-05-23T15:42:00.000-04:00

Remember this? So we have gotten the bills from that ER visit. Turns out even though we spent 10 minutes giving our insurance information to them, it didn't register and we got the bills. Totalling $1,342.72. That is for less than 2 hours at the hospital total (at least an hour of it in the waiting room- do they charge you for that?). Lots more waiting in the back too! (I'm sure we were charged for that since we took up a bed and all.) We never even saw a doctor. We saw a physician's assistant, a nurse, a guy who gave us a bear (which we were NOT charged for- it was donated by a church, according to the tag). And Charlie only got one staple! Next time perhaps we'll go to Home Depot for a staple....

In all seriousness though, thank goodness for insurance. I spent about 20 minutes on the phone, and now insurance will be billed, and most likely we won't have to pay anything. We have been really lucky overall with our insurance coverage (so far). We paid a copay for the NICU stay of about $600, but once medicaid kicked in, they have covered all our regular insurance's copays. Which seriously add up with the therapies, doctor's appointments, surgeries, hospital stay, presciptions, etc. not to mention now Charlie's feeding supplies and the formula he drinks. Hopefully we won't have to worry anytime soon about these copays. So, thanks insurance people!

Fun Saturday

2011-05-21T21:49:00.000-04:00

Charlie and I visited with two of my college friends and their children today. We are all so spread out now, which is such a shame! I really wished we all lived closer and could do it more regularly! The "photo shoot" portion of today's get together was fun. It appears that we had two out of three cooperating! :)

Charlie 23 months, Claire 4 months, Max, 16 months

Max says "hi Claire, what's up?"

Eh, I think I should lie down

Yep, this is good. :)

Later guys! I'm outa here!

Two of these kiddos spent some time on a putting green today running around, picking up balls, and placing them in the holes. It's a really good thing there were no actual golfers around. ;) Not surprisingly, Charlie was very unhappy when it was time to go back inside.

Communication

2011-05-17T21:32:00.000-04:00

Charlie is doing so much better with communication lately. It's not all verbal- some are signs, but he's doing more and more words "with his mouth". He's great with saying hi now, and we're working on "buh-bye!"

Here's a list of his signs:
eat, drink, milk, cheese, cheerios, cracker (funny, huh- considering his lack of eating!), light, bath, please, thank you, blocks, ball, fish, music, help, all done, more, hat, touchdown, waving

His latest are sleep, car and a sign he makes when he wants Dave's iphone. He watches "wheels on the bus" on the phone so he makes the sign for the "wheels go round and round." It's like the "roll-it" in patty-cake.

So tonight we went to Ci-Ci's for dinner and we had an amazing thing happen! Charlie's been there before and in the back there are arcade games and a racing game with a steering wheel. Nana once took him back and he "played" the racing game and on one other occasion Dave took him back. This has to have been weeks if not months ago. As soon as we sit down he starts to make the sign for car (like you're moving a steering wheel), which at first we thought he wanted the iphone. But he's also saying "vroom vroom" and looking toward the back of the restaurant. Dave quickly figures it out he wants to go to the back to the cars. We were amazed he remembered. Unfortunately we had a hard time convincing him that we'd go back when we were finished eating, and he kept asking the entire (10 minute) meal. Finally Dave takes him back while I finish eating. When they come back to the table Charlie looks at me and starts signing "more" and "car" and saying "vroom vroom." It was the first time I've seen two signs together (though my mother claims he signed to her "more cheerios please" months ago.)

God help us if/when he figures out that more happens if you put money in them.

Cats say "hi!"

2011-05-16T22:33:00.001-04:00

1. I've taught Charlie how to say Oprah. :) I figured since there are about 10 shows left this is something he needs to know.

2. We are working on animal noises (and have been for months). He now says "eee eee eeee" for monkey. He barks along with a Music Together song for dog "ow ow ow ow owwwww!" Some may say he has tried to say peep peep or tweet tweet for bird. When asked on Friday what does the cat say he responded "hi!"

Charlie was sick for a few day last week but was feeling well enough Friday for us to go to our second swimming class of this year. The first class, he clung to me with a death grip for at least half the class. This past week, he was excited and splashing and really into it.

Saturday Charlie and I went along on the road trip to Baltimore with Dave. We stopped and saw friends along the way. We stayed in a hotel. Charlie had a great time, and he slept really well. We dropped Dave off at the airport for a business trip and headed back south. Tonight I have to pick up Dave at 12:30am so Charlie is sleeping at Nana's. It's very strange to be ALL alone. I've been alone with Dave before and I've been alone with Charlie, but to be all alone tonight for a few hours is very strange!

Charlie and Woody and a phone

Happy boy running around the hotel room

Things I was not prepared for when I decided I wanted to be a mother.

2011-05-10T21:10:00.000-04:00

Charlie, Charlie, Charlie, I love you. I really do. I deal with your unwillingness to eat. I deal with three baths a day. I deal with appointment after appointment after appointment. I deal with the early morning wake- up calls. I deal with learning how to feed you with the gtube. I deal with you now wanting to be *all into sports!* (personal nightmare).

But your throwing up has got to stop. Your daily vomiting during or at the end of the meal frustrates and saddens me for many reasons, but if you MUST throw up, keep it confine to the highchair, please. Because then I know what to expect.

Today you threw up all over your crib and room during your nap. Today you threw up on the living room carpet. This is not acceptable. Mommy does not have the strength to handle this.

Also, please refrain from throwing up in your carseat. Or on my furniture. Or on me.

I can handle a lot. This is where my breaking point is.

Our weekend

2011-05-08T19:44:00.000-04:00

Well it's Strawberry season here in the South now, so we spent our Saturday morning picking them! Last year Charlie sat in a box. This year Daddy chased him around the field and through the mud while Mama picked.

He had a death grip on this strawberry. And he wanted to see what happened if he squeezed it!

Then he had strawberry guts on his hand, which he did not enjoy!

On our way home, we stopped by an area of the beach that I've not been to before. Charlie definitely didn't remember the sand from last year, and he was quite hesitant to walk on it. I'm sure he'll figure it out soon enough though!

Last night we were invited to a baseball game. Cousin Jacquie had a box! What luxury! Charlie is absolutely a sports fan, and he had a great time. He much preferred sitting outside and watching the game to running around inside the suite (which is what I figured he would do). I enjoyed the funnel cake, and watching Charlie have a good time. :) There was one point where it appeared from my vantage point that mid-cheer, Charlie took a nose-dive off the chair and onto the concrete floor. Luckily he was sitting between Coach and Dave and both managed to grab him before a face-plant. It scared me and him, but he was just fine. All in all, was a special night for Charlie since the game started at his bedtime. We stayed through the 6th inning and then put Charlie in his PJs before getting in the car to go home. It made for an easy transfer to the crib then.

Nana, Coach, Charlie and Dave enjoying the game!

Rip Tide came to meet Charlie!

Fast friends!

When not out and about this weekend, we've had even more basketball in the house. Now, Charlie is finding it fun to put anything and everything in the basket, you know, to see what happens. Here are some of the things I've found in the basket:

A hat below the huge beach ball

Mickey Mouse :)

The basketball video!

2011-05-06T21:05:00.001-04:00

Charlie is really loving playing basketball these days. Not so sure what he'll do when he's playing against a good defense, but we'll take it one step at a time. ;) Also, as you can see he was not cooperating and saying "touchdown!" when prompted. Perhaps he's figured out that doesn't go with this sport?

Make video montages at www.OneTrueMedia.com

Complaints today

2011-05-03T21:34:00.000-04:00

Charlie went to the GI doc yesterday and they said he was 18 lbs. 1oz. Can I tell you how much I hate hate hate not trusting if this is a "good" weight or not because every scale is a little different? We laid out a nutrition plan that Dave and I are going to do our best to implement for the next month or so. We are going to (eventually) give Charlie 600 mLs of formula (or 600 calories) over 8 hours at night. And we will be feeding him by mouth 400 calories during the day. We have to work up to the 600 though, so right now he's getting 400 through the night.

I have been frustrated at the decrease in the amount he will take by mouth since the surgery. And I was feeling like he must be getting too much overnight and was therefore not hungry to eat during the day. Anyway, we're going to try to the "new" plan now and see how it goes. Feeding therapy will most likely take a back seat for a while. Oh well. This month the focus is weight gain. Apparently you can't work on feeding and nutrition with this kiddo at the same time.

What else do I want to complain about you ask? The home health care company that sends our feeding supplies. We get our formula, feeding bags, syringes, and maybe someday gauze pads to put around Charlie's gtube. Last Monday I called to order the monthly supply. I expected to get things on Tuesday or Wednesday because that's how it worked when we got oxygen from this company from Sept '-09-March '10. On Thursday I called and they said it would come that day. Thursday evening we called the answering service and had them deliver some formula after hours because we were out! I did come Friday, but only after I figured out it comes the second before you are completely out of your monthly supply. Apparently insurance doesn't allow you to have any "extra"on hand, for I don't know, an emergency??? This is sooooooo frustrating. To add to that, we didn't get any gauze on Friday. So I called. They said it would come Monday. So this morning (Tuesday) when I still hadn't received anything I called back. They said they'd look into it and call me back. 15 minutes before the close of business today I called AGAIN. The lady I spoke to this time said she was going to have them personally deliver something today - not by UPS, but hand-delivered. Well, at 9:30pm, I'm still waiting. I'm sooo over this. And if this is what's going to happen each and every month, I'm probably going to lose it! (This is the warning to friends and family. You are now warned.)

Cute Charlie story: We watched the Royal Wedding last Friday. Charlie waved at the TV for hours. Because you know, they were all waving at him. ;)

Staples

2011-04-28T21:08:00.001-04:00

Charlie got the staple removed from his head today! He was not happy about it.
He weighed 17 lbs 9 oz. which is a 9 oz. gain in the month since the surgery. This is not as much of a gain as I would like to have, but we still haven't been able to get in the target number of calories. The goal is 1000 a day and he is getting about 845 each day.

He got a basketball hoop for Easter from Nana and Coach. I have to get some video of him playing and post it. The hoop is low enough that he can get the ball in without being picked up (thank goodness!) He plays all day long. And after he gets a basket he throws his arms in the air for "touchdown!" And you have to praise him and say touchdown or he gets mad at you. Also, if you ask him to say "basketball" he tries to say it! It sounds like "bah-ball."

He is also saying "hi" now on a regular basis. And Elmo, but really stretched out like it's three syllables "El-ll-mo." And he still says Cookie (for Cookie Monster- not a real cookie) but only in his Darth Vader voice.

We are still doing 3 baths a day (post- surgical instructions) for a few more weeks. Even Charlie is getting sick of them and fighting getting in the tub now. He'd prefer to, you know, play bah-ball.

Happy Easter and other news

2011-04-24T13:36:00.003-04:00

Charlie hasn't been put in an Easter basket (yet) like last year but he did have a number of Easter-themed outfits.

This is a chick coming out of an egg with a "C" on it

Bunny pajamas

Easter church clothes

Happy Easter!

By the way, Charlie is getting good at smiling for the camera when I ask him to (as you can see in the above pictures) but as soon as the picture is taken, I have to turn it around so that he can see it himself. :)

Charlie got to go to Preston's 2nd birthday party yesterday where there were farm animals!! There were two ponies, two goats, a tiny pig, 3 chickens, and a couple of bunnies. Charlie preferred to play with the balls and slide down the slide, but we did make him go visit the animals for a minute at least. Thanks for Preston's mom for the pics of Charlie with the animals!

For the few seconds he was interested in the bunny, he wanted to grab his fur. Mama had to stop him from hurting the bunny! :)

Charlie didn't seem to understand he had to hold on, so I did the holding on for him!

The weather has been crazy here lately- up and down and up and down. It's 80+ today but Friday night we bundled in our winter coats, gloves, and blankets and went to a minor league baseball game.

Charlie seemed to enjoy himself. He clapped at appropriate times, but he did kept doing his "touchdown" hands. He thinks touchdowns apply to all sports. (Must get it from his mama)

Our most exciting news is that there is a new bp5 baby! My high school friend Jen had a baby boy on Thursday night after a wonderfully long and uneventful pregnancy, and they named him Connor Patrick. Charlie can't wait to play with Connor, but he'll have to wait for now seeing as we live a few states apart. Mom and baby are both reported to be doing great! Woohoo! They should have made it home from the hospital last night, just in time for Connor to enjoy his first chocolate bunny today. ;)

The cookie and the soap

2011-04-21T20:25:00.000-04:00

Two short stories today:

Today Charlie got a cookie from the bakery lady at the grocery store! He's a toddler now! Babies don't get cookies, you know. P.S. I didn't know they gave away free cookies at Food Lion.

Tonight during Charlie's 3rd bath of the day he banged on the walls of the bath tub so hard that a bar of soap fell down off the ledge. I could see his mind working "oh, what's this? Haven't seen this before! I should have a taste." Before I could stop it, the bar of soap was in his mouth. Needless to say, he didn't enjoy it. But it sure was funny! :)

Tough guy

2011-04-19T21:43:00.000-04:00

Charlie's been asking us to find the best way to "show the toddler chicks how tough he is."

So toddler chicks, nothing is tougher than having your head stapled!

At 6:30 tonight as we were getting ready to go to dinner out, Charlie fell and hit his head on the bricks around our flower bed. It was a slow fall and not any worse than 10 other recent falls. Except 1 second after it happened there was blood everywhere. It was a scary bloody scene. We went to the local hospital ER (not even the children's hospital!) because you know, it was a normal toddler thing and nothing to do with the whole "I'm-a-preemie-now-with-a-gtube." We were lucky to be there in total, less than 2 hours. Charlie behaved really well overall. The new app Dave has downloaded on his phone is a huge hit. "Wheels on the Bus" anyone?

Egg Hunt: the video

2011-04-16T20:54:00.001-04:00

Make an on-line slide show at www.OneTrueMedia.com

Our very first Easter Egg Hunt

2011-04-16T14:09:00.000-04:00

There was no egg hunting last year for Charlie. He wasn't even sitting up without support yet (can you believe it?) He was in the basket last year, not carrying it around.

So today we attended an egg hunt at the assisted living home that Charlie's great-grandfather lives in, which just so happens to be right down the street. First off, we dressed him in his cute Easter chick shirt, but then he threw up breakfast on it, so we had to go to choice #2. I didn't know what to expect for the hunt- Would Charlie hold on to the Easter basket? (he did) Would he know to pick up the eggs? (yes!) Would all the other kids get the eggs before him? (sort of...)

Preparing to go outside!

When we arrived and saw all the eggs in the grass, I kept telling Charlie "in a little bit we will go and get those eggs, and put them in your basket, ok?" Then he'd try to get out of my arms and run and get them right then. (He really did GET it!)

It was a nice morning and we got Papa and brought him outside. Charlie met the Easter Bunny (who talked and kept calling him by name. A little weird for me, but Charlie didn't care). Then the time came to go for the eggs! He was in a group 0-4 years of age.

I will say he legitimately found and picked up 2 eggs on his own with a little encouragement from us. Then we picked him up and carried him over to another area before the kids could get there as well. He walked away with 5 eggs which was huge! I was so worried he wouldn't get any, or maybe just one pity egg or something. There were kids there with 20 or 40 eggs in the end, but we were very proud Charlie got 5.

After it was all over he wanted to dump his eggs on the grass and then pick them up again. Cute! :)

I have video too, but I can't get it in a format that will be accepted online. Ugh. I will keep trying.

Charles in Charge

2011-04-13T19:35:00.001-04:00

I'm back among the living again. Monday I was very sick and Dave actually stayed home to take care of Charlie since I wasn't able to. Nana took off work yesterday and helped Dave who went in after noon. Today I'm feeling like myself again thank goodness.

Charlie is now 2 weeks out from surgery, and I can say he's really doing well. He's off all the post-op medicines and doesn't seem to be in any pain anymore. We're still working out the kinks in his eating schedule to get all the calories in during the day and then 12 oz. of his special milk beverage overnight, but we'll get there. We found out the hard way that really there needs to be 3+ hours between his last meal and when he is "hooked up" for the night. Friday night about 1-2 hours after we started the feeding pump he cried so I went up to pick him up for a minute. When I put him down my shirt was soaked. Upon further inspection he was covered in food that had leaked out from around the g-tube. And it was suspiciously the color of his sweet potato dinner. So I think he was still full from dinner when he got hooked up, then he was sleeping in such a way on his belly that pulled at it enough that food just leaked out all over him, his clothes, and his bed. I will say- with all the throwing up that Charlie does, I could count on one hand the number of times I've had to clean up throw up from his bed. But now with this tube, I've had to clean up food leaking from the tube onto him and his bed twice in 2 weeks. As I said though, hopefully we'll work the kinks out soon enough.

Charlie woke up from a nap, I brought him downstairs and he fell back asleep again. Hm. Guess he was still tired!

Latest trick: Charlie pulls pillows down onto the floor and then lays down on them (for a few seconds, til he's onto something else). He must think they are nice and comfy!

Charlie got another monthly dose of synagis yesterday to prevent RSV. I was shocked LAST month that insurance was still covering this for him so this month was really really shocking! Next year he won't qualify, so goodbye synagis! Thanks for keeping us healthy through two winters!

NICU Follow-up again

2011-04-07T20:39:00.000-04:00

Since we had a third (!) doctor's appointment today I figured I needed a second post for the day. We stopped by the NICU follow-up clinic for our 6 month check-up on developmental milestones. At 22 months, Charlie weighed 17 lbs 2.4 oz, and he was 28 1/2 inches tall. He was 29 1/4 inches the other day. Boy do I hate how everyone gets different measurements.

His report card:

Gross Motor: 18-24 months

Fine Motor/Visual problem solving: 19.5 months

Language: Receptive: 21 months, Expressive: 18 months

He was in great spirits (especially considering all the surgical crap going on) and really participated in the activities that were asked of him. Also it was nice to see some familiar and friendly faces from our days in the NICU.

The two things on my mind right now:

1. Language: So just a few weeks ago he was evaluated by early intervention and he got a score of 13 months on receptive and 11 on expressive. This is a HUGE difference from today's 21 and 18. Ugh. So one reason is that today they counted his 16 sign language words and early intervention cannot count them. But I still don't understand how one person thinks he understands at 21 months and the other person thinks it's at 13 months. Either he understands or he doesn't, people! In any case, we will be getting speech therapy starting on April 15.

2. The next thing on my mind is that I feel that we have a doctor for each body part but no one doctor is willing to take charge of the whole Charlie and manage his care. Starting to get frustrated on this point.

If I had a third thing I was allowed to worry about right now I'd say nutrition, but I think I'll save that for a future post...

Charlie playing with his new ball in his new tunnel

Charlie recovering with Dada and Elmo (this was from Saturday when he had a fever)

Update

2011-04-07T11:07:00.000-04:00

So Charlie (and I) survived the last week. This morning we visited the urologist and got the catheter removed. She was happy at the way things were looking. Charlie will be a happy camper now that the catheter is out. And hopefully baths will be better for him now too- he'll be getting 3 a day for the next 6 weeks!

We also made an emergency trip to the g-tube clinic because it started looking gross and kinda red and leaking a lot- through an undershirt and a regular shirt. Oh yeah, and it's smelly. Turns out nothing to worry about there though either. She made the tube a little tighter (by adding water to a balloon that holds it in place inside the stomach) so it won't move around as much and "stretch out" the hole. We also got powder that helps to tighten the skin. This is a new world to us! Of course he wasn't happy to have anyone examining him, weighing him, or just plain touching him.

Thanks to everyone for checking on us and praying for us throughout the surgery and the last week. Hopefully we're really on the upswing now!

Avoiding the ER

2011-04-03T22:45:00.000-04:00

So last time Charlie had surgery we ended up with a high fever and ER visit 4 days later. We learned this was something we wanted to avoid. It was terrible, and they didn't do anything that helped him.

Over the last 6 months there was one other time where Charlie had a high fever (in the middle of the night), and we called the doc and they recommended going to the ER. By then Charlie had fallen back to sleep and seemed comfortable so we did not go, and all was well.

Are we pushing our luck?

Last night he had a fever of 103.2 with medicine in his system. One of he surgeons this week said "don't take his temp! He'll have a low-grade fever for days." (Of course, the official discharge paperwork says call if there's a fever of 101.5 or greater.) So we called the OTHER surgeon that didn't say not to take his temp. The resident on call didn't seem to make a big deal about it so we waited and watched Charlie and put him to bed. He perked up a little before bed and it seems now that the high temp was a short thing. So we didn't go to the ER. And no temp today at all.

Again I ask, are we pushing our luck?

Surgeries a success... (we think....so far....)

2011-04-01T13:37:00.001-04:00

Charlie's surgery to place a g-tube and have a hypospadius repair on Wednesday went well. We got there at 5:45am and he went back at about 7:45am. About an hour later the general surgeon came out to tell us the g-tube was in and all was well. Next up, the urologist did her thing... for about an hour or hour and a half longer than we expected. Someone from church came to check on us and sat with us for about 2 hours until we all heard the surgery was over.

Waiting before surgery

So he has a good inch or more incision to fix a hernia, a catheter, TONS of stitches, etc. Last time it was three weeks of the catheter and this time it will only be 8 days. This should be no big deal. He's in a lot of pain now, but as we know from last time, it won't last too much longer.

The gtube site looks really good too and isn't even red.

Belly before

Belly after

As soon as he woke up from the anesthesia we hopped on an elevator to go to a room. (private room). We got off the elevator and a nurse met us saying there was a problem and we had a new room and it wasn't totally ready yet. So we stood in the hallway (Charlie screaming to be picked up) for a good long while while they finished cleaning the room. (This was the FIRST annoyance.)

Other highlights:
We had a roommate who was an infant in this room. Overall it turned out this was not a problem and the room was huge, but the infant's mother was a PROBLEM. From 8pm to 10pm as I tried to lay down and get to sleep she talked to every person she ever met on the phone about her situation, the fact that her boyfriend was running around town while she was in the hospital and embarrassing her, arranging for rides for herself and visitors, etc, etc. At 10pm I got up and asked politely for her to take any future phone calls outside please! She did, and her baby immediately woke up crying and then no one was there to take care of him. Darn. When she came back she had the TV on til 1 or 1:30am. Otherwise, the roommate was ok.

The nurse apparently couldn't give Charlie medicines or do "hands on" checking and caring all at once and I kid you not, she visited him and woke him up every 20 minutes all night long.

We got a visit from 2 NICU folks including our primary nurse Jacki which was awesome!

Our interim pastor visited and brought Charlie an Elmo balloon. (How did she know he's the favorite?!?)

When the IV was taken out just prior to discharge there was an "incident". I went down to get the car and Nana was there helping and took Charlie on a ride around in the wagon (which he loves). She all of a sudden noticed his sock was completely bloody, but by the time she saw it, the bleeding had stopped. So a little scare there, but luckily all was fine.

We got discharged around 2-2:30pm Thursday and have been home ever since! Charlie finally started to try to get down and walk last night right before bedtime. He was very "drunk" looking, and we pretty much had hold on to him up so he didn't topple over.

Today he's doing well with walking. And he's finally trying to communicate with us again. And smile. :)

Oh yeah- last thing- breakfast! For all that wished me a nice huge breakfast delivered for Charlie-- we forgot the whole "clear liquids" thing. Wednesday night he was delivered jello, broth, a popsicle and ginger ale. Obviously, Charlie was not eating any of it, but Dad enjoyed the popsicle. So even though he was cleared to eat his normal food by breakfast time, the food service didn't get that memo and delivered broth again for breakfast. So, no, I didn't eat that. :) I went to the cafeteria.

Prayers for Charlie

2011-03-28T20:55:00.002-04:00

Charlie liked the jelly in the middle of the sandwich.

So Charlie having part 2 of a hypospadius repair and a gtube put in on Wednesday. We have to arrive at 5:45am. BRUTAL! We will be staying at least one night where hopefully we will learn how to feed Charlie with the gtube (there's no way they'd let us go without some schooling right?!) So if you could say a prayer that it all goes well and that he doesn't flip out too much afterwards, that'd be appreciated.

Do you think they'll bring us/him another breakfast fit for a linebacker in the morning like they did 2 weeks ago during the pH probe stay? I'll be sure and let you know. Also, I'll be waiting til at least 8:30 to go down and buy breakfast just in case they do bring one again.

Even though it was too cold for kickball, Dave was in a tournament Saturday and Charlie played a little too. :)

Aren't they cute? :)

I need a new attitude

2011-03-24T20:21:00.002-04:00

We had a dysphagia clinic appointment today and it ended with me in tears. Never a good thing.

First off, Charlie is not interested in cooperating anymore at doctor's appointments (not that I blame him at all), and Charlie's dad wasn't willing to come along. So for most of the hour and 45 minute appointment I had him strapped into the stroller so he wouldn't get into things. He screamed, but I could pay attention to the doctors and write things down instead of worrying what Charlie was touching, eating, throwing on the dirty floor and then putting in his mouth, etc.

They suggest shorter meals- 3 meals and 3 snacks a day. I really don't see how this equals less time in the high chair, or less stress for me. But it was the nutritionist that put me over the edge. She wanted to talk about how many tablespoons of this vegetable or how much egg he'd eat.

It was really stressful, and I know things are just going to get topsy-turvey again with this gtube next week. Do we feed him overnight or at meals? (An issue all the docs don't agree with, great.) Let's deal with that next week though, k?

I think I need to refocus my expectations. I've had a problem with my expectations my whole life, and once again I'm learning that they are too high. I need to stop expecting one of these doctor's appointments to have "the" answer for us. There just isn't one.

The second part of our day was a speech evaluation through early intervention. His receptive language skills are at a 13 month old level, and his expressive skills are at an 11 month level. He qualifies for therapy, and will be getting it every other week. So now through the city he'll get "preschool" class once a week (while school is in session), then alternating weeks: an educator to work on things like the shape sorter, identifying animals, and a speech therapist.

Surgery count-down is on: only 5 more days before it's here.

Carrots and Potatoes

2011-03-23T22:11:00.002-04:00

A really strange thing happened today. I made a roast and homemade mashed potatoes and gravy for dinner! This is quite rare, so we had to take advantage of the opportunity for Charlie to try some new food.

After taking a bite of a cracker he was interested in my cooked carrots so I gave him one. He'd take a bite, spit it out, take another bite, chew a little, spit it out, etc. until the whole carrot was chunks in his bib. Perhaps he did actually swallow a teeny bit?? Then he's ask for another one! ha! Eventually I gave him the idea of trying the mashed potatoes (which he refused when I gave him a spoonful) by dipping a carrot in them and then licking it off.

Make an on-line slide show at www.OneTrueMedia.com

Listen to the "yum" noices he made even when not actually trying it. :)

The Results

2011-03-22T21:28:00.000-04:00

So after calling the GI doc today and bugging him about the fact that we haven't heard yet about the results of the pH probe study, I did get an answer.

Charlie's acid reflux is 3.6% of the time and the average person's is 6%. So his acid reflux isn't bad. There was however excessive amounts of non-acid fluid in his esophagus throughout the day. Uh, no kidding, he throws up and gags and coughs all the time! Since the non-acid fluid isn't damaging to the esophagus the doc doesn't really care about it. Gee, thanks.

We do have an appointment with the dysphagia team of docs on Thursday so perhaps we'll get another set of opinions from them.

I'm pretty disgusted about the thing. It was a huge pain in the butt to do the test.... for once again, NO REAL ANSWERS!

In other news, Charlie didn't nap today, so I'm feeling extra nice and friendly. ;) Hopefully tomorrow is a better day!