Thursday, January 28, 2010

Five and a Half (in 3 more days)!

It's been quite a while since I've done a comprehensive update about the status, feeding and growth, preschool progress, stunning personalities...and all that jazz.

It's hard to know where to begin!

Healthwise, both girls have been doing really well. We haven't had any *sick* doctor visits in...well, I can't even remember how long, and that's a good thing! Outside of some chronic stuffy noses for most of December, we've been good. I think Holland has needed 3 or 4 Albuterol breathing treatments total since her hospitalization in October. Eden needed treatments with that October sickness too, but has only needed 1 or 2 since then, and has officially been *Hospital Free* for (almost) one year!!

Holland continues to take Zyrtec daily to help manage her allergies and eczema. She has a Flovent puffer that we use nightly, in place of the Pulmicort nebulizer treatments that she used to do to help keep her asthma under control. Eden's only medication is 15mg Prevacid solutabs daily to help control reflux. Besides those, both girls take a multivitamin, a zinc and echinacea supplement, and we recently started giving them Omega-3 softchews.

Eating and growing is also going pretty good. My only complaint is that they still won't really feed themselves. I accept at this point that is partly my (our) fault. We have fed them for so long that they just expect it, and I can't seem to get myself comfortable with the whole, "eat it yourself or starve" thing yet. Not when they are eating so well and GROWING! Holland is now 41 inches tall and weighs about 32 pounds. Eden is 40 inches tall and just recently hit THIRTY...yes, The Big Three Oh...pounds!!! We are quite excited about this and hope the trend continues. This puts Holland at the 4th percentile for BMI on the *regular* charts. Eden is above the 10th percentile on the awesome CP growth charts that I recently found (she would be in group 3 with those charts).

In terms of physical abilities and milestones... Holland continues to get private PT at home once a month, and school based PT and OT at school weekly. Right now she is working on balancing on one foot, and continues to work on core strengthening. She is doing really well jumping with both feet and climbing stairs. She can go up and downstairs without holding the railing, but I usually tell her to hold it anyway just to be safe. I still have to remind her to engage both arms when she runs (her left arm generally wants to be hand-open up in the air rather than fisted to help her balance), but overall her running is smoother and she falls less.

Holland's fine motor skills have really come along since this time last year. She is able to write her first and last name, and her letters are smaller and better formed, especially when she is reminded to write small. She draws pictures that really look like what she says they are, and sometimes surprises me. Her biggest issue with the fine motor is that she is really easily frustrated and sometimes gives up before she even gets going. One little glitch in her idea of what it is *supposed* to look like and she freaks out and tries to give up. She needs a lot of help problem-solving a way to correct the problem rather than just quitting. This worries me.

Eden has made leaps and bounds of progress in the mobility department. You may recall that she was just starting to push to sit and learning to play in the upright sitting position this time last year. She has perfected her bunny-hop crawling, and gets around the house quite speedily (is that a word?). Her upper body strength and catching reflex have improved greatly with all the exercise she does. She can maintain bench sitting for longer periods of time, can pull her legs around into the criss-cross applesauce position, pivots in and out of side-sitting while she is playing. She is also able to use both hands to play for short periods of time, and is much more balanced in the sitting position.

Eden's mind is often about 5 steps ahead of her body though, and when she gets going too fast, she has frequent tumbles and whacks her head on the hard floor. Most of the time she is completely oblivious to it and just pops right back up and keeps moving, but we all cringe when we hear her head hitting the floor. We call it "crack-a-lackin" and when there is too much of that going on we have to make her play in the family room, which we call the "soft floor." She absolutely hates being confined to one room, and will whine, "but I'm NOT gonna be crack-a-lackin!" We're thinking about getting her some type of soft helmet for her to wear at home when she is playing so that we can protect that noggin. Any ideas?

Eden continues to do private PT at home once a week, and gets PT/OT at school weekly as well. Her home PT told me last week that she recently reviewed Eden's goals from last year, and that she has met every one of them!!! Right now we are working hard on increasing stander time and more time in her pink Rifton Pacer (which requires more weight bearing than her pony walker). She also recently borrowed a nifty bolster chair that is modified with tall bars that she can sit in and use to pull herself into the standing position. She really likes this new piece of equipment, and it really opens up some fun opportunities for being more independent. Our goal for this year is that she might start pulling to stand and bearing more weight on her legs. I am cautiously optimistic.

This past spring one of my dear, kind, and thoughtful cousins bought Holland and Eden a Wii, and it has been invaluable in getting Eden to use her stander without complaint. Both girls LOOOOOVE the Wii, and could literally spend hours on it. John bought me the Wii Fit for Christmas, and we were quite excited to figure out that the balance board fits right under the new bolster/standing contraption and allows Eden to play some of the games. In fact, she has gotten pretty good at the penguin slide game and I love to see her doing it on her own.

Eden's fine motor skills are pretty good, but writing continues to be a struggle. She can write her name, but the letters are really large, might not be in the right order, and still don't always fit on the page. This is an area where she hasn't really made as much progress as I had hoped she would, and I am not sure where we will go from here. I have made it known that I want to pursue the assistive technology route more aggressively for writing once she gets into kindergarten. We will still practice handwriting, but I think to really get her best, she will need to be able to do the bulk of her schoolwork that involves writing on the computer.

(Dear Horse, Love Shadow)

Both girls have an appointment with a new pediatric ophthalmologist tomorrow. Our beloved eye doctor who has treated them almost since birth has retired, so we are going to someone new. Though I am sad to lose another doc that we loved, I am interested to get another perspective. Holland's left eye continues to turn out significantly since her last surgery, and she has a difficult time pulling it in, even when she is wearing her patch (two hours a day...still...sigh). I really don't think she is using that eye much except when her patch is on. She seems to see fine out of it, but literally moves her head to see things rather than pulling her eye in. Very sad. I fear that she will need another surgery, but I am really worried about overcorrecting (which seems to be what happened last time) and scar tissue and I'm not sure we would/could go through with it.

Eden had some updated Speech and Hearing testing done in December. The results were simply amazing. As always. I haven't received the official report in the mail yet, so I can't tell you actual scores, but I do know for sure that she made significant gains in every area, and is squarely in the average range for her real age. There were a couple of subtests where she went from getting, like 2 questions right, to testing all the way to the ceiling of the test and getting something crazy like 60 right. It was cool. On that day I took them to McDonald's for lunch to celebrate Eden's averageness. The only area that I noticed some significant weakness was in her ability to discriminate sound with background noise. This may be why we notice that she zones out a bit in loud environments where there is a lot going on. She just cannot hear as well.

We are in the process of trying to get Eden an upgrade for her cochlear implant processor. The one she has now is getting old and has a loose connection. It works, but we have to tape two of the parts together or it starts shutting off on her at random times. There is also a small crack in the battery casing. So anyway, Cochlear has come out with a new processor and she is eligible for an upgrade. There are a lot of overwhelming logistics behind it with insurance and trade in values and copays and whatnot, so I won't bore you with the details. It is going to happen, we're just not sure how soon and what kind of dent it will put in our finances yet. She is very excited bc the new processor has a remote control that she will be able to operate without taking her hearing off at all!

Preschool is going really well, and it has been such a huge relief to have the girls in the same program as last year. Eden has the same wonderful one-on-one aide, two of the rotating special ed staff are the same, one bus driver, PT/OT/ST/and HI teacher are also all the same. The kids are different (obviously), and they have a different general ed teacher and parapro...but they knew the girls from shared field trips and recess last year. All of this has just made this year seem like a piece of cake compared to last year. All of our meeting have been very unstressful (is that a word?) and the girls seem to be having a blast.

They fit in well with this group of kids, and I even think they seem more mature in some ways than some of the other kiddos. We really LOVED last year's group, and there were more girls, but I think they tended to baby H and E a little more, whereas this year they get to be the *big* girls. Eden has been taking her power chair to school once a week this year as well, and that has been a nice thing for her. I am hoping that we will be able to use it even more next year. The power chair has just been amazing for her social and emotional development. It allows her so much more independence than any other piece of equipment and I just love it. She is able to *run* around the playground with the other kids, slosh through the snow, barrel through the fall leaves, and zoom through the sprinkler... None of these things were possible before the powerchair, without have an adult carrying her all of the time. If you have a kid who is not close to walking at age 3 or 4, I highly recommend that you explore power mobility as an option. It has opened up a whole new world for Eden.

Another super cool preschool related piece of news...BOTH girls are really starting to read!!!! Gosh, I see kids learning to read all of the time at work, but it is still something so amazing to see with my own kids. They know all of their letters (upper and lowercase) and almost all of their sounds. They both have sight word vocabularies of about 20 words? Maybe more. They can do rhymes, and can generally tell me what letter any given word starts with. They are on par with the sight words...Eden may even be slightly ahead because she has more interest, but Holland is a little better right now at the sounds and rhymes. But both are really coming along, and I think they will be in a great place starting kindergarten next fall. They are also doing really good with number concepts, counting, and simple word math. Holland does great with numbers up to 10 and Eden is working on numbers up to 5 or 6.

So, this is getting really long. And I haven't even gotten to their stunning personalities yet. Guess that will have to be another post. There's still so much to tell!

Monday, January 11, 2010

Twenty Ten

Things I should be doing right now, instead of blogging:
- Folding and hanging up clean clothes - the girls' and my own.
- Unloading and reloading the dishwasher.
- Sorting through the huge box of assorted mail and papers that need to be filed.
- Packing up clothes that are too small, so they can be passed on to my nieces.

The thing about it is...those things never last. I have to do them over and over and over again. When I haven't posted to the blog in a while, I start to get that nagging voice in my head..."write a post, write a post", and I start to feel bad about slacking. I feel the same way with all of those other tedious things around the house that I need to get done. But, at least when I finish a blog's done. And it lasts.

This blog has served me well, and it's purpose has changed dramatically over the years. In the beginning, it was just meant to be a way to keep our friends and family informed about what was happening with the girls in the NICU. After they came home, it became a way for me to stay connected to the outside world. It was a way to connect with other preemie parents, as well as to give and share information about what we were going through. Eventually, during the roughest times, when we were learning about the girls disabilities and the lasting impact that their prematurity would have, it became a therapy tool. A way for me to unload all of the pain and grief and sadness that I was experiencing.

The blog has been useful in all those ways. It has been helpful for me, and also for other people. But I don't personally need it for those reasons anymore. I have developed a strong, lasting support network of family, friends, other NICU parents, and other parents of children with disabilities, both in "real life" and online, that I interact with on a regular basis outside of the blog. But, more importantly, I don't need it because I am in a really happy, peaceful place in my life...a place that I never really thought I would ever be. Twenty Oh Nine was a great year for us, and I feel like Twenty Ten is going to be even better!

But, don't worry. I am not going to stop blogging. I am not going to stop, because every so often I start reading through the archives. In fact, over the past few months I have been reading through the entire thing as I am changing the old pics to a new system. I have finished up through 2005, and have only 2006 left to do. So, as I work on that, I read each post again, and look at each picture and I am so, so glad that I have this wonderful chronicle of my girls' lives. It's like the ultimate baby book. I love reading the funny stories about things they have said and done and remembering what they were like as yummy little babies and toddlers. So, I can't stop. I know I would be so sorry if I did!

I would be sorry, because I want to remember what Holland and Eden are like as five-year-olds. Five is like...the best age ever! They are so funny and cute, and becoming so much more independent. I can hang out with them, and we have really great, interesting conversations. They have opinions and ideas, and, believe it or not, are even getting better at cleaning up their own messes.

I have lots to say about my almost five and HALF year olds. And now that I have convinced myself that I MUST keep blogging, I will work on another post now...

Until then...check out our new haircuts!

Holland Before:

Eden Before:

Holland After:

Eden After:

Me Before:

Me After:

It took me over a year, but I finally worked up the courage!