Sunday, June 07, 2009

A Few Great Things That Go Great Together!

What a wonderful weekend it's been! So many things have happened that I've had a difficult time trying to pick a title for today's post. Eureka! The great and almighty CLICK! Down the hatch? In the end, there were so many things I just went with an all purpose cover title. Finally the clouds have parted and the sun has come out and suddenly what everyone has been promising seems to have finally happened.

As a mom of preemies you hear all the time that "it" will happen, they will "get it", and "then one day it just clicks". These are difficult things to hear when you talk to more experienced moms and doctors and therapists. You hear it so much you swear they are all smoking crack because this is clearly NEVER going to happen. The opening of the hand to grasp something, the lifting of the arm to swat, holding up a miniature oversize head on tiny weak neck, the pushing up with the arms, the rolling from belly to back, sitting unassisted... I could go on and on, but if you've followed my blog you've already heard my woes on these issues.

But the moral of the story is that it does "just click". And to truly understand what that really means for each worried mother is a continuous process. It's not that this magical "click" is so sudden that you don't see it coming. On the contrary, you are looking so hard for it combined with the agony of realizing and constantly being painfully aware that your little one is not progressing even for their adjusted age with all the hard work and available services to help. Further more (and this is the worst) that it has taken so long for them to feel good in order to WANT TO EVEN TRY NEW THINGS has been the saddest problem all along.

As I had previously posted on Wednesday the boys got their very first colds and had their GJ feeding tubes replaced with standard Mic-Key Button G tubes. It was painful and scary for both of them and it's been a very rough week during the night because they can't sleep with the runny noses and bad coughs.

But Friday during our PT session Cameron started to not only willingly roll over on to his belly, but push and pull his way on to my lap so that he could drag his body up in order to reach the exersacer play table. And to add the icing on his individual cupcake he has figured out how to balance on his feet and stand without holding on to anything for a few seconds, then put his arms out and grab stuff to hold on to when he does finally lose his balance. Not only that, but he can also go from sitting on his Fisher Price Song & Story Learning Chair and lift himself by his knees only and stand while lightly holding onto something in front of him. And he is also showing signs of wanting to crawl a little bit because when we put him in the crawl position he now stays there and rocks back and forth without complaint or trying to roll over.

Not to be out done by his older brother Evan has started trying to do the EXACT same maneuvers but to a much weaker extent for now because his muscle tone is not as solid as Cameron's yet. You can see in the video above that he's doing a lot of standing with minimal assistance from Daddy's hands working as his own as-needed chair. Also, since he doesn't like people to touch his hands or to hold on to things and has a weak hand grip the balance thing is an issue and he's slowly learning that it's not an option to put your hands down, sometimes you have to do it. Tummy time has officially and finally become a fun thing for them and as awkward and back breaking as it is to be their own personal jungle gym, I am thrilled to have these two monkeys pulling up on me all day long!

And really I owe it all to the other babies that we've had the pleasure of meeting these last two weeks. I think that the boys were able to finally see what they could be doing and get some ideas from other kids because ever since then the boys have been really adventurous.

Another wonderful thing, and music to my own ears, is that Evan has very clearly said in front of me, my husband, my mother, and the physical therapist the sounds "Mamama" and he was very pointedly looking at me or looking around for me. This is our very first intentional and directed verbal communication and he's right on track with that for his adjusted age of 11 months.

On Saturday I was able to sleep for 6 whole hours for the very first time on over a year and a half all thanks to my wonderful husband, my mom, and a full dose of Nyquil to help with the cold the boys gave me. Meanwhile, baby gymnastics continued and at lunch time the boys had worked up quite an appetite and impressed me again. Lately Cameron has not wanted to eat at all and only wanted water. Drinking water from a spoon or from a little clear plastic bowl has been an enormous success for them lately and I wanted to expand on that obsessive desire for water.

Previously I had put the water in a Dr. Brown's bottle that they used to eat formula out of, and had mild to disastrous results. This time I put it in a clear sippy cub with the inside valve removed so that some water will trickle out slowly but easily when tipped over. (Yes I know that this means we'll have a flood of water everywhere... but you do whatever it takes, right?) Then I pretended during their meal to drink from the sippy cup. Monkey see, Monkey do, my Monkeys love to copy too! They seemed to get the idea that water came out of the cup when they put the tip in their mouth and the natural instinct to lightly suck came back to them and they were able to drink small doses of water from the cup as I held it. They loved it and kept leaning their heads as close to the sippy cup as they could. I had been told they would never drink from a bottle again, and that very well seems true. I had also been told that they may not even drink from a sippy cup if they have forgotten their suck reflex, so we are still golden because this was a big hit for them.

Yet another beautiful thing is that all kids love a good cookie, and mine are no exception. We have been giving them a LU Brand (a European brand) cookie called Le Petit Beurre. This is a mildly sweet butter cookie that when wet gets very mushy quickly and dissolves in the mouth in small amounts, much like graham crackers do. My mother used to give these to me when I was little too. The boys have started putting these in their mouths and use their little pair of teeth each to gum and scrape of little bits of this cookie. If a piece breaks off or is too much for them texture wise, they let me pull it out with my finger or they lean towards the water cup and sip a little water, which then dissolves the cookie crumbs quickly and they swallow it. They don't really eat much, just crumbs, and you can see in the pictures they don't look to excited about it, but the point in this exercise is that they are putting it in their mouths on their own and doing so repeatedly and no one is gagging and vomiting from the texture or taste. The volume consumed will come with time and help from the feeding clinic.

On Sunday Cameron was really showing off and rolled over three or four times completely from one end of his play mat area all the way over to the other side to get to a toy, his feeding tube wrapped around him twice like a spinning top. Evan continued to practice his climbing on Daddy.

And best of all on Sunday was that I was able to take the day and spend it with my BFF to celebrate her parole day from 13 long weeks of strict bedrest. I'm so proud of her for being such a trouper and keeping her sanity for the last three months, and so very happy that Baby P is going to go full term. We celebrated by going out to have lunch and casually stroll around the local mall and enjoy some ice cream in the shade on a perfect warm summer day. One of the best days I've had in a long time. A perfect way to end a wonderful weekend.


Kim said...

What an AWESOME weekend!!

Have you seen Baby Mum Mum cookies? They kind of work the same way.

Laura said...

Kim, where do you find the Mum Mum cookies? I have heard of them but have not seen them in stores.

Sara B said...

Aw, that is great, Laura. I had chills reading that. I'm so glad the boys are doing so well. I found that milestones clustered together for Marino too. We have to gtg again no time the boys will all be running around and wrestling!

We get the MumMums at Whole Foods. I'll bring you a package the next time we gtg. Marino LOVES them (as does our dog).

Annie and Jason said...

Awe...what a GREAT post! So the boys are done with the J-tube feeds now? If I read that right, OMG - congrats!!!! Do they get bolus fed thru the G? I can't detect any tubing in the pic, I hope and pray we can get to where you are.
Good job Laura - you're doing such an awesome job!

Raymond said...

How cool is that! Hearing "mama" or "papa" the first time is incredible.


Jennifer said...

Congrats, Mamma! They are going to start doing more and more exponentially. This is such great news! Going to get some of those cookies if I can find them. Mine are officially addicted now and I take great pleasure in finding them awesome new cookies. There are a lot out there, yum.