Monday, August 31, 2009

That's a relief!

Today we had our first OT session in three weeks because the boys had been sick or the OT was on vacation. I expected it to go badly as we've had a terrible three weeks with feeding. It went better than I imagined. She said that she's personally not concerned about any signs of autism in either child any longer because they have finally learned to calm down and sort of self soothe themselves appropriately in social situations. They are more social with non-family members and more social with non-family members who need to physically work with them which has taken all of 15mos to be able to do and has always been one of our IFSP achievement goals. Also, their stranger anxiety has gotten better even though Evan still has moments of terror for no apparent reason when someone says hello. And our OT said the key for her is that the boys have started to point at everything and make a sound that sounds like the word "see" with the inflection of a question or an exclamation. Our OT works through the local school system for the Early Intervention and Infants and Toddlers program and when she's not making home visits to families like ours she's working in the local elementary school with her autistic students. She said that none of the autistic children she's ever worked with in her 20 years ever points and makes sounds with inflection like that until after much work and they are much older.

This is a huge weight off of my shoulders because it is the first time where one of our many professional advisers on the boys has finally stated something positive in regards to their potential for out growing their social anxiety and beating the odds of autism as a result of their prematurity. Granted in no way does this give them the clean bill of health with regards to an actual evaluation for autism. It just means at this time we see no reason to need to have an evaluation. HUGE relief.

Another funny thing that happened today was that when the therapist was working with the boys today we had the windows open. The neighbors son decided to ride his motorbike around in the yard (he's not supposed to be doing this, and I may rat him out to his father) and the noise was very loud. Cameron and Evan both stopped what they were doing and pointed to the window. Then Cameron covered his head with his hands (because he doesn't know where his ears are yet) and began to pout and whimper. He's easily startled and flinches or blinks at loud sudden noises, where as Evan (surprisingly) not and didn't seemed bothered by the noise as much as Cameron.

And the piece de resistance today was the double crying fit when our OT got ready to leave and was saying her goodbyes. Now that the boys know to wave bye-bye and understand the concept of someone going away we are making a big production of it in attempt to get one of the boys to say the words along with the action. No words were said, but they both melted down because (are you ready for this???) THEY DIDN'T WANT HER TO LEAVE!!! It has taken over a year to get the boys to let the PT even touch them, and 8 months to get them to not melt down when either the PT or the OT walk in to the room. And now they cry when she's leaving. WTF???? Yet another reason why the OT thinks we're in the clear with any basic social dysfunctional orders.


Oh and today we had our first turn to jelly moment. The kind where a kid wants something and is told no and is so upset by this that they turn to a bawling mass of jelly with forehead resting on forearm. Cameron was climbing up and standing on the seat of his Fisher Price Sit & Learn lounge chair/side table/lamp thing and I told him no and removed him from the toy to put the toy away. He leaned against the grown up chair in the playroom and flopped his head down on his forearm in sobs, legs barely keeping him upright, in despair that he was not allowed to stand on his chair anymore. Thank god he wasn't looking in my direction because I was on the floor laughing. Too cute. For now. He was easily distracted with another toy and quickly forgot all about his chair climbing. For now.

Daddy taught us how to climb steps!

The boys love their new bath towels!

Sunday, August 30, 2009

Where's your nose?

Today I was able to confirm that the boys know where their nose and their mouth is. Ears, eyes, hair, cheeks, chin are much harder. They clap A LOT, and they know to shake their finger in a scolding way when Mommy Calls The Doctor And The Doctor Says "No More Monkeys Jumping On The Bed". And Evan loves to open sloppy wet kiss Mommy on the mouth all the time. Mostly he misses and I get a forehead or a nose or an eye, but you can tell what he's trying to do. They are champions at pointing and Cameron even says "See" at everything he points at, though I don't think he's knowingly saying the word see in the context that we normally use it.

We visited Mommom & Poppop and Uncle Chris and Timmy and Lucy and were perfect angels the entire visit. The boys even showed off their new ability to walk every chance they got. One of the best lines from today was from my niece Lucy who said "It sure is hard keeping these little guys entertained!" Truer words have never been spoken.

It was a great fun day!

Saturday, August 29, 2009

Evan is Walking Too!!

OMG! OMG! OMG! It's totally a Monkey See Monkey Do - Me & Me Too situation in our house. Today Evan walked 10 steps all by himself! Naturally I burst into tears and the boys became very worried about why Mommy was crying happy tears and cheering. I can't believe this is happening so quickly. It's unbelievable the change that has taken place this month. He's accomplished so much in just the last four weeks that I'm speechless. I love my babies so much!

Development & Understanding

Recently this article has been floating about in the news and I wanted to post it here in case anyone has not seen it yet. It is an article about preemies, their parent's NICU experiences and how this often lead to Post Traumatic Stress Disorder. Most people realize that a baby having NICU experience is tragic, but they often forget what it does to the parents, particularly the mother. It is more than just postpartum depression and can last longer, take longer to deal with and hopefully one day get past. This article is well written and hopefully there will be more reporters and research doing works like this to help battle yet another grizzly aspect of preemie life.

Also I wanted to take this moment to promote a new feature to the Toys R' Us website called The Toy Guide for Differently-abled Kids. It's great to finally see the internet's biggest toy store resource working to promote their products in ways that help parents decide what toys would be best suited for their children regardless of their skills and abilities and to help promote learning and function. I know I personally have spent many hours searching for toys with the sole purpose of using it as a tool for Cameron and Evan's gross and fine motor skills. Prime examples would be the Fisher Price Sing Along Superstar Karaoke Stage (by far my favorite toy) and the Fisher Price Bongos.

Thursday, August 27, 2009

Cameron is walking!!

Yesterday Cameron took five steps. Today he took about 10 times that many steps. I think it's safe to say that I have a walker. I have an actual toddler who toddles. And soon he will be running. It's amazing how fast all this happened. But once he started rolling over, getting into a sit, rocking on all fours, crawling backwards and pulling up about a month and a half ago I knew then that he would be walking very soon. Our therapists were thinking it would happen sometime around the begining of September too. Finally! Finally Cameron is on target for most of the motor skill things that the boys should be doing at 17mos of actual age.

Here's video footage of the big event. Sorry it's so dark and grainy, and yes that's Elmo the boys are watching. Hey, whatever works right?

Walking in the kitchen:

Wednesday, August 26, 2009

Good, Bad, Ugly, Amazing

Yes, I'm sorry. It's been too long since the last posting but it's been busy, and by the end of the day I've got just enough time and energy to FarmVille, YoVille, Fairyland and post on my favorite boards before I crash for the night. Or at least until 1am when I get up to fill the boys' feeding pumps. Anyway, here's what we've been up to.

The Good

We've been so incredibly busy this month and next month is going to be even busier. We started off with ending our summer session of Rollie Pollies. We loved it so much we signed up for another 9 weeks and have taken to playing Rollie Pollies at home.

We spent the day at one of the county fairs with our local Preemie buddies Brendan, Marino and Simon. Unfortunately we spent a lot of time sitting in traffic and didn't get there on time so we only got to see a few animals, but what we did see was fun. And it was cool to hang out with Mom's who get it, all of it. It's really nice to have that support locally as well as nationally. Next month we're going to do another get together at the DC zoo and this time we're going to have our friends MHop and her daughter Campbell join us all the way from SC!

Dear god Mom! That smells worse than Bridget!

It's been super hot with lots of big thunderstorms at night so we've been spending time in our personal lagoon trying to cool off.

Pool Time with the Puppies Chewie and Bridget!

We also had our very first large group meet & greet at Uncle Tim and Auntie Te's wedding shower. The boys have never met so many people all at once and it was during their big nap time which had us nervous things wouldn't go so well. Surprisingly the boys did amazing and really tolerated all the attention very well. Even Auntie Jenny and Auntie Te got to hold the boys a couple of times which was a life saver for me. Yay for Aunties who like to snuggle babies!!

The Bad
The boys have been having some issues with their poop lately. They are once a day kind of guys and have never really had much diarrhea before so when the really runny stuff was still happening several times a day for three weeks I decided enough was enough and took the boys to the pediatrician last Monday to discuss what could be causing this to happen.

The pediatrician said that diarrhea has nothing to do with teething six teeth at the same time, which both babies are doing.(Oh Joy!) Because they are tube fed almost continuously on a very elemental formula called Neocate at a very high calorie content (30 k/cal compared to standard baby formula of 20k/cal) the pediatrician thinks this is just their bodies saying they've grown and need to get on to three or four bolus feedings a day and off the continuous overnight feedings. The problem with this is that they have been doing very badly with their bolus feedings and even worse eating by mouth. They vomit about one to six times a day each, averaging about two vomits a day. This is great compared to the 20 times a day from before. We have to push the boys harder to tolerate more volume over a shorter time so that it will stretch out their stomachs and hopefully they'll just get used to eating that way and get off the over night feedings. I hope this works because it would be heaven to not have to get up to feed the feeding pumps at 10pm, 1am, and 5am.

While we were at the pediatrician she said that they happened to have the flu shots in and that day and wanted to give the boys their flu shots so they wouldn't have to get them in addition to all their 18mos vaccination shots. That night after the boys went to bed, Evan woke up with a fever of 102.5 and the week of misery began. Two days later Cameron came down with the same fever. Teething with a high fever = Daddy stays home from work and we all try to entertain the cantankerous babies. I let them watch Elmo pretty much all day for two days straight while laying in big fluffy pillows on the couch because that's the only thing that they wanted to do.

The Ugly
By Thursday Evan's fevers had subsided and he developed a funny rash that looked a lot like heat rash. It's not uncommon for the babies to get heat rash often, especially recently since it's been so hot and muggy outside, but this was much worse and all over their arms, legs, hands, feet, face and shoulders. By Saturday Evan's rash was gone but Cameron got the rash which lasted until Tuesday (yesterday). The doctor said that it had absolutely nothing to do with getting the flu shot and that it was probably a virus the boys caught while in her office that day and was maybe Roseola (sp?) or a variation of what my mom calls the German Measles. I canceled all of our appointments and therapy sessions for the rest of the week because all the people we do therapy with have other patients who have fragile immune systems and I don't want to be "that parent" who lets this kind of thing pass on to the next kid, because I know exactly what it can do to and don't wish that on anyone.

Here's what Evan's rash looked like, Cameron's looked exactly the same but more on his face.

Here's Daddy entertaining babies, and himself.

During this whole week the boys have been miserable, cranky, drool mongers and sleeping horribly, worse than usual. And they still have excessively watery poops which is now starting to give us our very first cases of "bad" diaper rash. Fun times. Another horrible outcome from all of this is that the guys suddenly don't want their pacifiers anymore. They just spit them out or shake their heads to avoid when we offer it to them. It's both a horrible thing for us and good thing that they suddenly don't want them. Most parents would say, great! Now I don't have to "give them to the Paci Fairy to give other babies who need them". But for us, the pacifier is a special tool we use to help the boys maintain the ability to suck and keep something in their mouths for long periods of time, something that they until now didn't find offensive and that worked to help sooth their gag reflex and to let us know when they've had enough or too much oral stimulation during therapy sessions. With the comfort from the paci's gone I have no idea how feeding clinic and OT sessions will go. And because of all of this the boys have also taken huge steps backwards with refusing to eat anything by mouth at all. They just want to teeth on things and will not touch any food unless it's to smear it all over the table and throw it on the floor. The dogs have been enjoying that new game a great deal.

The Amazing
Despite feeling like crap from teething and getting really sick the boys have continued their motor development explosion. Cameron is crawling all over the place, can sit or stand without holding on to anything, has crawled through tunnels but usually gets stuck because he decides halfway through that he wants to sit up and can't figure out why this doesn't work. The biggest news for Cameron is that he's taken five steps all by himself without holding on to anything. It was a beautiful moment and he was laughing and giggling at me the whole time.

Evan has been a total copy cat and wants to do everything that Cameron does and go everywhere he goes and gets irate and hysterical if his brother gets more than ten feet away from him. This is great because it makes Evan lean forward and crawl to try to keep up. But he can't really crawl because he's weak on one side so he scoots with one foot and drags the opposite knee. He doesn't get very far very fast yet, but it's a matter of time. And he's pulling up on anything he can get his little hands on, using his forehead as a fifth appendage for pulling up. And he's taken to biting pretty hard, often bruising and pinching, but only when he's excited and his mouth happens to be pressed against my shoulder. It hurts!!! Hopefully he'll grow out of that phase quickly. The biggest news for Evan is not only is he crawling, but he's started freestanding for longer periods of time, and today he took two steps with his right foot. It became more of a pivot, but they count as steps since I think that was his intention and he kept his balance.

It's so exciting to see them moving around. It's the best feeling in the world to know your child will not be stationary forever, that the 50% chance of not gaining their gross motor skills the neonatologists gave them before they were born was completely wrong. That they are beating the odds again and again and again.

Monday, August 10, 2009

Evan crawled for the first time!

Oh yes he did! Evan crawled for the first time today at Rollie Pollies. We were sitting in the waiting area before class started and Cameron and another baby Jacob were crawling all over the place. Daddy started following Cameron and Evan as usual became upset that he couldn't follow his brother and his daddy. He leaned as far forward as he could and rocked onto all fours and crawled about four steps forward before getting frustrated and rolling onto his side. Here's the pictures from this big accomplishment:

After this last shot I couldn't take any more because my camera was too slow and I couldn't see because I was crying.

Here are some more pictures from a great week.

Terrorizing poor Annabell at Mommom & Poppop's house. She's such a good dog.

The Bowie Boys at Rollie Pollies - Brendan, Cameron, Evan

Brendan charging full steam under the climbing mats.

Evan sitting on the 20ft trampoline. Bouncing is fun!

After Rollie Pollies - Our first family picture since Thanksgiving 2008.

Helping Daddy install the new baby gate.

Testing Daddy's baby gate building skills.