Sunday, November 29, 2009

I'm thankful for progress


It's time for me to note some of Hannah's progress as of late, something I do periodically to make myself feel better as well as also chart where she has been and where she is headed, information that's useful to all of the people who provide her with care.

This seems to be a good time to do it, as recently we just finished up hippotherapy for the winter and her therapist asked us to outline some of the things Hannah has accomplished in the past year and any other changes. So progress has been on my mind. It's also a good time to do it because we just recently celebrated the girls' 4th anniversary of their homecoming from the NICU, on November 16th. Hard to believe that just 4 years ago, we were bringing them home after 54 endless days in the hospital. Equally amazing to think about all that we have gone through since that time, and how far we have come. Finally, I'm in need of a progress report as we go into the holiday season, a time of year that can make me a little melancholy. All the time we spend with the girls' cousins, while really wonderful and special, also remind me of how different Hannah is. Watching her try to keep up with everyone, fielding all of the questions and comments from the kids about Hannah's walker, orthotics, glasses, etc...it all just magnifies what we can sometimes minimize at home in our safe little bubble. So it's important for me to see just how far this little wonder kid has come, because it reminds me that if she has come THIS far in such a short time, just THINK of how far she will continue to go and how much more she will develop and achieve.

So, here it is. A brag list of Hannah's latest and greatest tricks. I probably forgot a few things, but these are the highlights. Go Hannah go!

  • Hannah is just about totally independent in her walker. She uses it at home and in the community. She can get into and out of it on her own. She has pretty good endurance in it as well.
  • She can get into and out of a sitting position on her own, into both a W sit and a straight-leg sit.
  • She can pull up onto furniture and cruise.
  • She can get off the couch or a chair by herself and she can also lower herself from her walker onto a bench or chair if it’s the right height. She can get out of her bed.
  • She can four-point crawl.
  • She can get up the stairs holding one of our hands and holding the railing with the other. We're working on getting her to walk up sideways, holding the railing with both hands, so she can do it independently.
  • She is getting introduced to forearm crutches. We have a way to go with these, but she just figured out-tonight, actually-that she can stand independently in them so hopefully that is a big motivator for her to get more proficient with them.
  • She is potty trained.
  • Her fine motor skills are also really coming along: she can twist a cap on/off, she is pretty close to doing large buttons on her own, she can string small beads, she can write a few letters, she can feed herself using a fork and a spoon, she is getting more precise with her drawing/coloring.
I am excited to see where she will be at this time next year!!!

Monday, November 9, 2009

Some updates


Things have been wild and wooly around here now that we're a family of 5! There has been a lot going on, so many things I've thought, "Oh, I should post about that on my blog" and then the moment is gone, eaten up by a baby needing to be nursed or four year old twins needing attention or dinner needing to be made...

But I have a quick minute now, everyone is napping at the same time unbelievably, so here are a few choice updates:

The girls have been slowly adjusting to life with a new baby in the house. The adjustment has been harder than I thought it would be. I see the merit to having kids very close in age. Although more physically demanding, the emotional/behavioral toll is probably much less intense. The girls are old enough and smart enough to realize just how badly their world has been rocked by Sam's arrival. Hannah's reaction has been to be extra whiny and cry a lot, whereas Isabelle's has been more of defiant/angry behavior. Neither is a whole lot of fun and both have really taxed our parenting strategies. Not to mention trying to work through these behaviors while I'm sleep deprived! I think things are getting better, but it has not been easy. Some comments the girls have made really shed light on what's going on in their minds as they process things:

  • "Is that ANOTHER package for Sam?" as I pick up the mail and in it is, yes, another baby gift for Sam. The only redeeming thing has been that their birthday was not long after he was born, so they had a pretty steady stream of gifts coming in right around the same time as well. But it didn't seem to matter much. Each gift that came for him was noted with a great deal of scrutiny and I'm sure I paid for it later in some kind of bad behavior or another.
  • "I want to be a baby again." This one needs no explanation.
  • "Mommy, please put Sam down. He doesn't need to eat again."
  • "It's really nice to have special time JUST with Mommy. NOT with Isabelle, and NOT with Sam. JUST Mommy and Hannah."
That last comment refers to the fact that we're trying to set aside special time with each of the girls. I recently started to pump so that B or someone else can give Sam a bottle and I can get out without him. Those times when it's just the girls and I are so special and I think they have made a big difference for all of us. And it seems so EASY! I forget what it was like, before I got pregnant. And I do miss those days. It's definitely MUCH harder to get out and about and do things with all 3 of them. In fact, I really don't do much, just me and the 3 kids by ourselves. I haven't figured out all of the logistics and it's just too much effort. There are a few small outings that we can manage, but otherwise we hang around the house or do things in smaller groups. Thankfully the girls are in school 3 mornings a week so that gets them out of the house!

Having Sam has definitely brought up some more grief around Hannah's CP. I find myself thinking, fairly often, how easy it would be if only she were more independently mobile. It's been awhile since I've spun the "what if" wheel and it's really a useless exercise because it only serves to make me sad. But at certain times, when it's so clear that life is that much harder because Hannah has CP, I find myself going down that path again.

I also watch Sam like a hawk, to see if he is developing typically. I see him moving his little arms and legs around, flexing his feet, wiggling his toes, and I think, "Is that all normal? Is there any high tone there?" Earlier on, I was worried he wasn't really making eye contact and had concerns about his vision. But even though I am more worried than I might be if we didn't have the experience we did with the girls, I also feel more relaxed in general about Sam's caretaking. I'm not sure which came first: his mellow attitude or mine. He is definitely a pretty easy baby in temperament but I am also most certainly more relaxed than I ever was with the girls. I don't feel like I need to spend every spare minute stimulating him, positioning him properly, worrying about how much he ate, trying to get him to sleep, etc. It's really nice to be freed from those obsessions.

So things in our family are different, in new and challenging ways. They're also fun. It's really nice to have a mellow baby to snuggle up with and I cherish those quiet times with Sam, when I can really be in baby mode. It's also fun to see how the girls are interacting with him. Despite all of their acting out toward me, they still remain interested in playing with and helping to take care of Sam. And I think as we all continue to adjust to this new life, we'll feel like it was always this way.

Wednesday, October 14, 2009

Sam is here!


I have been very negligent with my blog ever since our little one arrived. I have an entry that I started weeks ago, in an attempt to write his birth story and share it with everyone. But I never seem to find a minute to finish it. So while that's still in the works, here is the short, short version:

Exactly on his due date (at 12:30am, in fact), our newest member to our family arrived: His name is Sam, he was a whopping 10lbs, 2 oz and 22 inches at birth, and this coming Saturday he will be six weeks old! He was born via c-section after I labored for about 8 hours. More on those details when I finally finish that birth story!

We are all adjusting to life as a family of 5, but one thing is for sure: we've all fallen head over heels in love with this little guy. His birth and everything since then have been such a healing process for us, and one we continue to appreciate with amazement: a full term, big, strapping boy. What a different extreme from the one we experienced with our girls. I have so much that I'm processing about all of that, and hope to share it once I can find a minute to write it down. As you can imagine, spare minutes are hard to come by these days!

But in the meantime, all is well and happy and crazy in our family!

Wednesday, August 26, 2009

The lingering trauma of the NICU

Today's NY Times has this article about the post-traumatic stress many parents face after having a child in the NICU. A good and validating piece.

Tuesday, August 25, 2009

Waiting for the babe

I'm now 38.5 weeks pregnant and still amazed that I made it this far, over 11 weeks farther than I did with the girls. I'm starting to wonder if I'll EVER go into labor, actually, which is a pretty crazy feeling. I feel like I'm in pregnancy purgatory. I'm very ready and excited to meet this new little one, although I'm definitely anxious about it as well. I'm wondering how I'll manage the girls and a newborn, especially with Hannah's various therapies and appointments to deal with. But maybe it will be a little bit easier when I have my body back. For the past few months or so, I feel like I've been a sub-par mom because I haven't had the energy to keep up with the girls the way I usually do. B has taken over the bulk of the stretching with Hannah but all of the little things I used to do during the day to ensure she was getting enough of her exercises in have fallen to the wayside. At least it's summer, so she's getting outside a ton and is building up some amazing endurance with her walker. And the day-to-day way that we do things around here also help ensure good posture and positioning. But the big stretching/exercise chart I made is a painful reminder of how much more there is to do, and how little I've been able to accomplish.

I realize too that while I'll have more physical capabilities once the baby is here, I'll also be exhausted and probably overwhelmed in different ways. Ah, it's going to be crazy around here for awhile! I guess I'll just have to cut myself some slack, do the best I can do and realize that it won't be this crazy forever. I just don't want Hannah to backslide or regress in the process, because she's really come so far in the past year.

Sunday, August 9, 2009

Crawling on all fours

Hannah is doing it, finally! It's so much work for her and you can see in this clip that some of it is "W sit scooting" as opposed to true four legged crawling, but she definitely gets herself up there and around and it's wonderful! You can hear her saying to herself, "One hand, two hands. One hand, two hands" as she reminds herself to get up on her arms AND her legs. Go, Hannah, go!

At the fair






Agricultural fairs/field days are big around here. B took the girls to one yesterday while I lounged around at home. I would have loved to be with them, but the idea of walking around in the hot sun for hours didn't appeal to my late pregnancy self. He got some great pics though. You can see how Isabelle is the total animal whisperer in these pics. She absolutely LOVES animals of all kinds and has a real knack with them, too. Hannah prefers to just check them out from a distance. Both girls had a great time and were hot, dusty and a bit "farmy-smelling" when they got home. It's summer in the country!