Thursday, July 30, 2009

Showing off!

Today at Library Story Time Cameron crawled to the middle of the room in front of everyone and stood up on his own with no help all by himself, with nothing to hold on to. And he did it TWICE! He got a round of applause from all the moms in the room. I'm so proud of him!

Tuesday, July 28, 2009

Explosion in our House

For months, since February, we've been working with the boys on putting things in their mouths to desensitize them and convince them to eat by mouth. And it has been more than an up hill battle most days.

Today during feeding clinic Evan put a special oral stimulation / sensory tool that looks like a lollipop made out of a sponge soaked with water in his mouth and sucked the hell out of it over and over and over. Not only that but he learned to dip the sponge into the water for more to suck. He refused to eat any real food off the spoon but he chewed and sucked the hell out of this stupid little lollipop stick with a pink sponge on the end. It was all I could do to keep my composure and not scream and jump up and down in tears right in front of Evan and his therapist.

Cameron has a slightly higher degree of oral sensory over-stimulation issues and so he's refused to put the lollipop in his mouth, but he will occasionally let me do it. Baby steps.

I hope this works, the image link was tricky to find. Here's what the sponge brush looks like.

This last week Cameron has been rolling on to his belly, pushing into a sit or into a crawl and either crawling backwards making him very angry and frustrated, or pulling into a stand so he can cruise the furniture in the playroom. But the greatest thing for him is that this afternoon while making our daily cruising-the-furniture trek through the play room Cameron actually crawled forward without hesitation and with great speed for about six feet and over the small step up from the playroom into the kitchen and then plopped his butt backwards into a sitting position. At that point I burst into tears.

Hey Cam! Look what I found!

Not to be out done by his brother Evan also has been doing his best to face his fear of falling and is lurching himself forward or twisting to the side placing both hands on the floor in valiant attempt to get into the crawl position. He's repeatedly done several face plants but no crying or fussing. But because he hates to be on his belly he hasn't realized yet that he could roll on to his belly and get into the crawl position. But that's the next big step for him to learn. Evan is also doing the same "use mommy as the jungle gym" moves that Cameron started to do two months ago. This is an enormous relief off my shoulders because every gross motor skill after he figures out how to stand up and crawl will come wickedly fast.

Waiting for Daddy come home from work:

Chewie sitting on the steps and also waiting for Daddy to come home from work:

The boys watching Chewie on the stairs:

Bridget, with her typical caught-in-the-headlights look, wishing the hairless puppies would get away from the door so she can jump on Daddy as he comes home from work:

This week the boys have also learned to wave hi and bye bye and practiced waving at people walking past us while sitting in a restaurant window at the mall. Super cute and Cameron has almost figured out to say buh-buh. He also loves to point at his own nose which is a skill that he's right on track for his adjusted age. Another really adorable thing about their finally getting more mobile is that are FINALLY sleeping better. Not through the night, but much better, and I'll take whatever they give me. And Cameron has started to do new things in his sleep that are just too adorable. Now he sits up in his sleep, he talks in his sleep, and every morning he's pulling up and jumping up and down in his crib when my husband comes in to get them up at 5:30am. Pretty soon, maybe in the next month or so Evan will be doing this too. We're lowering their mattresses to the lowest setting this week.

Notice Cameron's top two teeth showing:

It's been such a great day and a beautiful tremendous relief to see improvement that is like a great explosion of development instead of tiny little improvements that we have to grasp on to.

Our new jungle gym that isn't actually Mommy, and this one has a slide:

Ew! Not liking the grass too much Dad.

Wednesday, July 22, 2009

On the Go!

We've been so busy these last couple of weeks, and I've been somewhat unmotivated to much of my usual blogging. Just feels like I'm running out of steam for most things lately.

Yesterday I had to take the boys in to have their G Tube stoma sites cauterized because of too much skin granulation (where the skin is growing out in raw flaps and folds just where the tube enters the belly and they get bloody sometimes and really irritated). They do this with a long matchstick looking thing tipped with silver nitrate which burns the skin without odor. It is poisonous and lightly burns any kind of skin layers instantly when in contact leaving a black or gray film of dead skin. Evan's stoma was so bad that they sent me home with a handful of these silver nitrate things and I have to cauterize him three times a day for up to three days to fully get rid of the skin granulation. It's very painful when it's done and I hate hate HATE beyond words that I have to do this to him. I may have to do it to Cameron as well if his gets any worse. Makes me sick to my stomach.

Anyway, we have had some amazing progress lately. It is official, Cameron can go from being on his back, to his belly, into a sit, then pull himself up and cruise around on the furniture, or on to all fours and rock back and forth. He is able to crawl but hasn't realized it just yet. Probably by the end of the week or next he will have it figured and crawl for a month or two, and then he will move on to taking independent steps to walk. Evan is still content to stay put on his back and refuses to voluntarily roll on to his belly though he can do it quite well when made to. But when you place him in to a sitting position he's all about trying to copy Cameron. He's attempting to pull to a stand and definitely loves to try and cruise around the furniture. Once he realizes how to use his balance and enjoy making big movements and trust himself he will want to get out of laying down on his back and start rolling on his belly. I think this weekend we are starting to baby proof and it is looking more difficult than we realized. There's just so many things they can get into, and god help us when they can start working together to achieve something!

As for eating by mouth there has been no change other than to say that this week Cam is the good eater while Ev has decided to stop cooperating. The last two weeks it was the other way around. But we keep trying. The help/hindrance is that both boys are cutting new teeth. Cameron has the bottom middle two and top middle two and is now getting the top two eye teeth and a bottom tooth on the right all at the same time. Evan is cutting his top two middle teeth and I think I see several other teeth all over the place getting ready to surface but they are still deep and painful. Both boys have had bad cold symptoms in the last couple of weeks because of the increased saliva but they're great little troopers, with major drool.

Cameron is also starting to sleep through the night while Evan is still struggling with horrible reflux and waking up every 20min to an hour in screaming fits. But there have been a couple of decent nights recently so maybe we'll turn the final corner soon. We have found that if we give the boys some Zantac between 11pm and 1am that they sleep just a tiny bit better.

The boys have really started to interract with each other a lot more too. They copy each other, they sing (make monotone humming noises when I sing to them), they like to hug each other, and the love to kiss each other, which is really when they push their foreheads together with their mouths open for a wet slobber. They often miss by a long shot on the kisses but they do grab and pull at one another and you can tell they really enjoy being together. It's really freaking adorable. They also let me pat my hand over their open mouths while they make sounds so that it's a funny sound and then try to replicate it by doing the same with the back of their own hands against their own mouths. When they both get going at the same time you can't help but laugh.

As for me personally I've had a bit of a low moment.

I have always wanted to have at least two kids, possibly three and I'm two thirds of the way to that little girl dream. But after the last two years I've really changed my stance on this dream, understandably so I think. But it's still there in the back of my head, my heart, nagging at me. With all the new babies my friends have all been having lately, and now that the boys are finally progressing pretty well, I'm getting some pretty heavy baby fever. I know, shut up right? Watch what you wish for, you might just get it, more than you bargain for. Didn't I learn my lesson with the first try?? You bet I did!

Last week I had my yearly OB appointment and I asked my new OB what her opinion would be of my being able to have more children giving that I've had twins, they were preemies because of severe IUGR, and my advanced maternal age (I just turned 36 the week before the boys' 1st birthday). I asked because, while I think we're officially done, I really wanted to know that the plumbing is still working so to speak for my own piece of mind. I also feel like I want a chance to have a normal healthy pregnancy if I go completely nuts and decide later on that I really do want another baby. Or at least know that I could if I really wanted to anyway. Just the normal healthy same old me through and through. In a way it's almost like proving to myself that I am okay, that I can do it, that I'm past all the horribleness that has been this last 16mos. Because I haven't enjoyed much of the last two years though I've really really tried. It's been more difficult than anyone can imagine, so many more things that I have not talked about or written about. So to get another opportunity to have a healthy baby could be almost refreshing, cathartic, normalizing and regrouping for me if it had a chance of going well and healthy. Does that make sense? I don't know, but it also seems selfish too. Anyway...

My old OB who delivered the boys has moved out of town and before he left at my last appointment said that under no circumstances should I try to get pregnant until we discussed it after the boys first birthday, and that it would have to be another c-section, and that I would be on bedrest immediately and for the duration of the pregnancy because he didn't have confidence in my uterus withstanding the damage done by the inverted T incision he had to make to get to Evan. So naturally I wanted another opinion from my new doctor.

The new doctor's response was that they as a practice probably wouldn't advise my trying again at all, but at least not until three years after the boys birth to give my body as much time as possible to completely heal. That it seemed probably that I would have an incompetent uterus wall which is far more dangerous than an incompetent cervix which can be delayed with medications and a cerclage, and that my advanced maternal age means that I'm likely to have more multiples and all the risks that goes with them, and that they can not guarantee that future babies would not have severe IUGR as it's possible my body just doesn't make good placentas. She said "For your sake, I hope you really don't want more."

So there we have it. The nail in the coffin. I knew it, but just needed to hear it. It's sad. I'm sad. I would love to have another baby, even two more, even twins or more again. But not at the age of 38 and not with all those risks for me and my already existing family. But it does take away that thought of "maybe" off my shoulders pretty easily I guess.

Most of my friends, those I know in real life and those that I've made through my support groups, all think I should get a third opinion from my Peri, but after discussing it with my husband I'm not sure that it's worth it because we don't think we're up for having more kids now after all of this. Ugh, oh well. And I was bothered by the way my new doctor delivered the information at first. Not the nicest way to put it right? But I agree with her too, and I always appreciate the direct approach even when it's hard to take.

The boys also had their one year Infants & Toddlers Early Intervention evaluation to decide what therapy services they need after their first year with the state Occupational and Physical Therapists, whom I absolutely love. It's been agreed that we will have the OT as our primary service provider with PT becoming the secondary (it was the other way around before) and now we are adding a teacher once a month for a half hour for each baby to work on speech therapy. This really isn't changing how many therapy sessions we get a week at home for free, but it changes the focus and makes it more about the feeding than the motor skills. I was disappointed to see that while the boys are doing better overall, they are still struggling waaaaaay behind their adjusted age, in some categories as delayed as much as if they were 6mos old. But in others they are right on target for their adjusted age, mostly for their fine motor skills. So there is relief and still the usual panic and depression. It is what it is, and I could go into more detail, but really we just plug away at trying to help them catch up hopefully by the time they are three, though realistically I think it will be by the time they are four or older because of the feeding issues we have which the majority of people do not realize the huge impact this is to every aspect of daily life and the challenges we take for granted.

That's pretty much all the news I have here... I've been busy and desperately trying to catch up on much needed uninterrupted sleep wherever possible, so I've fallen behind updating the blog and hope to have more updates later on this week. Looking forward to celebrating all the birthdays and retirement for Poppop Bob this month. Here's more pictures from the last couple of weeks.

Sunday, July 05, 2009

So Big!

I hope everyone has had a lovely Fourth of July weekend. While we didn't really do anything to celebrate the holiday, we did visit with friends and family so that was nice. And it has been an eventful week for us developmentally. Both Cameron and Evan are pulling up to a stand in their cribs. They can not go from laying on their backs to sitting up yet, but that is sure to happen very soon. But if they are sitting in their cribs, or in front of their exersaucer, they can pull up to a solid standing position and even side step several paces. Until now the cribs have been set up so they are still at the highest level, the newborn height, and we have not had to put the side railing up because they couldn't sit up. But that has all changed and so this weekend Daddy has lowered their cribs to the middle level and we now put their side rails up all the time. Yaaaay for big boy beds!

Also, we have retired our swings. The boys can barely fit into the lap buckles and both of them can do this....

Cameron now voluntarily rolls onto his belly, props himself up on hands and knees and rocks back and forth and scoots backwards. This is very frustrating for him as he really wants to go forward. He's almost figured out how to go from the crawl position to pulling up to a stand and can stand unassisted for almost a minute. He is also now found some new sounds "bebebe" and "wewewe".

Evan is hot on Cameron's heals and wants nothing to do with laying down and really just wants to practice his standing and pulling to a stand. Taking steps and getting into the crawl position is still extremely difficult for him and his neck strength is not what it should be yet and he tires easily from the poor muscle tone. But he's excited and happy to do tummy time now that it's more fun for him to do, thanks to the removal of the GJ tube. He hasn't picked up any new words but has started to realize that shaking his head from side to side means "no". Yikes!

Evan has been my good eater this week, while Cameron will not let anything pass his lips. It's immensely frustrating but we keep trying. At most they only tolerate eating about three tablespoons of pureed foods, and at worst every bit ends up on everything except in their mouths.

The vomiting is a raging pain in the neck to put it mildly, they still puke about two to five times a day, but it is still strictly reflux vomiting and not the bile that was caused by the GJ tubes they used to have. The worst hours are still from 2am to 6am, with the morning bolus feeding being worse than the afternoon bolus. We will keep trying to bolus the boys twice a day on the feeding pump and hope that they start to tolerate the increased compressed feeds and their stomachs stretch to accommodate the food but it has been somewhat unsuccessful overall. We have, on the advice of our pediatrician, started to give the boys one full 15mg solutab of Prevacid twice a day, the same dose that many adults take for severe reflux. Hopefully we'll see some improvement with the reflux in a about a week.

Chillin' with Dad

Cameron's new funny face.

Playing footsies in the stroller.