Sisterly Love!

Saturday, on the way down to ARCH for therapeutic riding, Hallie grabbed hold of Lea's hand and held it. And kept holding it.

I hope that Hallie remembers how much she loves Lea the next time Lea grabs her stuff or gets in her way!

On a related note, apparently the horse whom Hallie rides weekly (Sir G.) has a special relationship with Hallie. He is extra gentle and responsive with her (and she is with him...apparently she has a very good 'body sense' of when to shift her weight, when to lift her body to signal him that it's time to trot, etc). Here are a few recent pictures from hippotherapy:






And while Hallie was riding, Lea was playing "nosey" with the horsies:

Monkey Girl

Several times a day, Lea stands beneath the pegs on the wall where the kids' headgear hangs and shrieks a bit, while pointing at the monkey visor on the first peg. She loves this thing and happily dons it herself and walks around the house. We were curious about its attraction to Lea, and this week, we discovered why she has such an affinity for it.

Quite simply put: Lea is a monkey girl.

Her favorite pastimes of late include:

1. climbing into her Fisher Price Ocean Aquarium swing and kicking wildly whilst throwing her body back and forth in order to get up some speed and height. Needless to say, she has neither the capacity nor the volition to strap herself in. Tomorrow, the swing will be folded up and moved down to the basement.

2. climbing into her high chair, where she likewise enjoys kicking her legs. Fortunately, she does know how to get down out of it safely so we don't have to replace our table with a low, Japanese deal and toss out all of the chairs in the house.

3. Climbing into the stroller, standing up while in the stroller, and detaching the bike lights that I have attached to the top of the stroller, on the outside, to increase our visibility in the evenings. Apparently, Lea has noted that "spring ahead" has rendered these obsolete. Do not ask me how she has managed to do this, though. I think she's a bit of a houdini as well as a monkey. And hopefully she's good at slithering on her belly snake-like, too, and will locate the one light that has now gone missing.

And my favorite move:

4. Climbing the stairs to the bathroom. The other night, I went into the kitchen to get her a snack, which involved opening the freezer, taking out an individual serving sized ice cream, and walking back towards the dining room, where I had left her. I was gone perhaps two minutes, if that. When I passed the stairs, I heard someone opening and closing the bathroom door. It wasn't Hallie, who was asleep, and it wasn't Sharon, who was upstairs with her. It was Lea, who grinned her impish grin at me as if to suggest that she had triumphed. Which, of course, she had.

This is why we keep the gate closed, and Lea on our side of it:

An Important Milestone

I don't have time to write a long blog post tonight, but I did not want to let this go un-noted:

For the first time ever, today Hallie went up to another little girl at school and, unprompted, asked her to come play. I am not sure who Stella (the little girl who warranted this advance) but I am pretty darned sure that she is pretty special. Flora, Hallie's aide, was brimming with joy when she informed Nadia of this. And so are we.

Hallie has become very chatty at home and has been initiating play with Lea; her cousins Hannah and Adam; and her friends Taylor and Alex for some time. But now she's exporting her new-found skills as a communicator to the kids at school. I know that they are going to find Hallie's bubbly and silly personality as compelling as we do.

Spring is Here and Change is Everywhere!

Today was another glorious spring day (well, not quite Spring, but almost). Everyone's health is on the mend: Hallie's pneumonia cleared up quite quickly with amoxicillin (thank goodness she is willing to take the capsules mixed into some applesauce); my cold has gotten better; and Sharon is on the mend after having been felled this past weekend by the same cold that prompted Hallie's pneumonia. Lea still has a super runny nose (and hates tissues, which is a pretty awful combination) and a bit of a cough but it sounds considerably better than it did yesterday. She is also teething (I think most of her bottom teeth in the back are poking through), and this cannot be much fun. And all of us seem to have seasonal allergies: mine are responding to lots of zyrtec and Hallie and Lea have non stop nose faucets and sneezing, but nothing that we're too concerned about.

Anyway, the kids got out to the playground on Thursday and Hallie had the opportunity to improve on her already not-half-bad tricycling skills. She has learned to steer fairly well and, while she needs a bit of a push to go uphill, she's doing a nice job of keeping her feet on the pedals. She's graduated from the little pink trike that she rode last year to the one that she received as an (overly optimistic) second birthday present.

Of course, as Hallie does, so does Lea. Lea has been super interested in the trike. At first she wanted to play with its streamers and the door to the little trunk that goes open and shut. But then she got more ambitious ideas:



I suspect that, could her feet reach the pedals, Lea would be riding all over the place right now (which would be fairly hard to do in our debris-strewn and overly-crowded row house, but Lea is never one to be stopped by things that stand in her way).

On Thursday, we also took a late evening walk over to Whole Foods to purchase some more of the kids' most recent favorite snack, which happens to be on sale this week. This is a good thing, because even on sale, they are hideously expensive (2 boxes of 5 little packets for seven dollars).

Hallie and Lea love Amy's organic gummy bunnies. They tried them for the first time today and there's no going back. Unlike traditional gummy fruits, these have 100% of our vitamin C requirements and contain nothing artificial. They are also silky soft and easy to eat. Hallie would prefer to eat the red ones (since they taste like fruit salad to her. This is not something I can wrap my head around because the kid has never eaten fruit salad in her life, but I'm willing to accept it for what it is and move on).

This, of course, opened up the option of gummy vitamins to us, and so I picked up some while I was at Whole Foods yesterday. Even though they are made by the same folks, they are not nearly as complete as the Rainbow Lights Nutristart packets that we currently use -- I presume that this is because they are assuming that kids who can handle gummy vitamins are also eating a broad variety of foods, which Hallie obviously is not. But they do sell gummy veggie supplements, gummy mineral supplements, gummy DHA/RHA supplements, and the like. So I assume that we'll be investing in those nutriceuticals as well. Why eat real food when you can eat gummies, I ask?

After we were done with the store, I had the brilliant idea of calling Sharon, who was still at work (at around 7pm). It was lovely out, and I convinced her to finish up what was doing and meet me for dinner at a new barbecue joint that has opened across from Whole Foods. The setting is informal, there is outdoor seating (which was convenient while Lea was asleep and less convenient when she woke up and Hallie wanted out of the stroller, but we were easily relocated inside) and they had some kid-friendly options (mac and cheese for Lea and white bread and crayons for Hallie; Hallie did not consume the latter). Dinner was not an overly lengthy affair, but it was nice to get out of the house and out in public and I am happy to report that we did not need to evacuate in an emergency, either (those of you unfortunate enough to have had the opportunity to dine with us in years past--and even as recently as this winter when we went out for pizza with Aunt Laura and the cousins--know that dinner outs often end on an unsavory note for us that involves large tips and futile attempts to clean up puke. Last night was not at all like this, and so it falls in the magical category.

Anyway, this is all to say that it's been a nice week and sibling-altercations aside, the kids are super cute.

Here they are modeling some haberdashery that is more sized for Lea than it is for Hallie. (Thank you again, Anne, for the excellent hats and we definitely hope to not have to use them again this season!).



And, finally, Lea is really walking, as you can see in this video (sorry that it's so long):

Fellow Preemie Mom Opens Super Cool Boutique

I know that we're planning on getting Hallie's 4th birthday shirt here:



They have a vast array of super cute baby and kid items. So visit their blog for a fun shopping experience!

Pneumonia Redux

Yup, it's happened again. Hallie was just diagnosed with pneumonia for the second time in three months. This time we did not let things get too bad because we knew what to look for: regular low grade fevers that were getting higher steadily; the cough (which came on a lot quicker this time around); a total eating and drinking strike; lethargy; shallow breathing; and the oh-so tell tale burning sensation that Hallie was feeling by her left shoulder blade.

Sharon brought her into the peds today and Hallie was satting a crappy 95. The fever was controlled with tylenol, but the very careful doctor took one look at Hallie's medical history and sent her right up for a chest xray. The left lobe, and particularly its lower section, was very occluded and looked like crap (I think that's the technical medical term). It was a bit hard to tell if this was what her lung looked like healing from the last bout of pneumonia or whether it was a new bacterial infection that had lodged in her not-quite-healed lung. But given her lack of symptoms for three months and the rapid onset of symptoms between Friday night and today, they have decided that it's most likely a new pneumonia. So as of this evening, Hallie will be back on amoxicillin (capsules dumped in apple sauce) and hopefully that will relieve her awful cough (sounds like she's hacking up a lung, which I suppose she is) and get her back on track.

And so, once more, Hallie quickly managed to gain a tremendous amount of weight (she was 33 lbs 8 ounces two weeks ago, stripped naked) and lose it again even more quickly (today, clothed and in a pull up she was 33 lbs even, so she's probably around 32.5 lbs, max, at this point). We're not so worried about her eating right now (she hasn't eaten in three days pretty much at all) as much as her drinking. Dehydration on top of pneumonia would buy us a nice bed in a shared room in CHOP really quickly. And we definitely prefer the notion of staying home.

Pragmatics

Well, it took several phone calls and a six week wait, but we finally got a copy of the speech evaluation that Hallie had done at CHOP back in mid January.

We think the therapist who did the speech evaluation was quite wonderful (coincidentally she was the same person who did the eval for Hallie back when Hallie was 18 months old and said nothing, so overall she was very impressed with how far Hallie had come). We wish she had room on her schedule for Hallie to see her since we've heard very good things about her capacity to treat kids who are similar to Hallie. But the folks responsible for setting up the evaluation and getting us feedback from it could not have possibly been more disorganized than they were. First, it took about three and a half months to actually get an appointment for an evaluation at CHOP. I called the last day in September, CHOP called me back the first week of November, and set up the appointment for their very first opening, which was late January. The wait itself was maddening, but what was even more maddening was that the scheduler kept changing the appointment on us. She'd regularly call us to cancel the original appointment and say stuff like 'But we just had a cancellation for this morning? can you come over right now?' Of course it proved impossible to drop everything and run to Voorhees, NJ (we couldn't even get in to CHOP's main hospital in Philly for an evaluation---the wait there was interminable). Finally, after much back-and-forth (I think they changed the appointment on us four times) and about nine different phone conversations about insurance coverage, we did manage to find a new slot that actually worked and Sharon brought Hallie in to meet D. Sharon was given a verbal report of part of the evaluation and reported back to me that Hallie was ahead in terms of her expressive language but behind in other respects.

Of course, how behind is the big question, and this is something we could not answer until we got the formal evaluation. And when I opened the thick envelope with the write up last Saturday, I was a bit shocked.

Here's what the final verdict was:

First test: Clinical Evaluation of Language Fundamentals--Preschool (2nd ed) (CELF-P:2)

Average range subtest Scaled Score: 7-13 (mean 10)
Average range Composite Scaled Score: 85-115 (mean=100)
Mean Percentile Rank=50

Hallie's scores:

Subtest: Sentence structure: scaled score 6; percentile rank: 9. Age equivalent: under 3
Subtest: Word Structure: scaled score 6; percentile rank: 9. Age equivalent: under 3
Subtest: Expressive Vocabulary: scaled score 11; percentile rank 63. Age equivalent: 4.2

Core language score: scaled score: 86; percentile rank: 18

Second Test: Comprehensive Assessment of Spoken Language (CASL):

Subtest: Pragmatic judgment: standard score 80 (mean score of 100, average rank is 85-115). percentile rank: 9%. Age equivalent: 2.7

The summary assessment written up by the therapist concluded that "Hallie presented as an adorable girl with a complex medical history for prematurity and a recent diagnosis of High Functioning Autism/Asperger's Syndrome. Hallie's performance on standardized teesting revealed just below-average to average receptive and expressive language skills on standardized testing with difficulties in pragmatic language constructs. Strengths in expressive vocabulary skills were noted. Hallie displayed age-appropriate articulation abilities, representing significant progress. Hallie displayed reduced grammatical/morphological complexity. Comprehension decreased as the length and complexity of the oral message increased. Hallie demonstrated a below-average ability to make pragmatic judgments when provided with social scenarios. Hallie exhibited the pragmatic language functions of labeling, requesting, answering/responding. Hallie also displayed a strong awareness of polite terms during today's assessment. Hallie had difficulty greeting, commenting, and asking for informatio. Hallie demonstrates reduced awareness/use of non-verbal language constructs in social contexts. With respect to voice, vocal hoarseness, breathiness, and a soft vocal intensity were observed."

There's a lot more accompanying verbiage, but what it amounts to is this: Hallie knows a heck of a lot of words, and she more or less uses them appropriately. Her spoken vocabulary is above average, and is equivalent to that of a 4 year and 2 month old. But her comprehension (receptive language), sentence structure, and pragmatics (capacity to use language to communicate) are well below average and land her in the 9th percentile consistently, which means that 91% of kids her age communicate better and can follow along more easily with what is being said much easier than she can. The two go hand in hand from what I can tell: if you have no idea what is going on around you (you are not comprehending the conversations you hear, the instructions you are given, etc), you cannot really communicate with others very well, either because a good half of communication involves listening to others, interpreting what they are saying, and responding to them. So while Hallie absorbs a lot of words (nouns and verbs, in particular, and concrete ones more easily than abstract ones), and is generally using 3 to 6 word sentences with great frequency, she can't really/doesn't really interact with her environment. And given that interaction is less important for Hallie than it is for other kids who are much more engaged with the people in their environment, this seems to me to be a problem that compounds itself--rather than resolves itself--over time.

We are working on helping Hallie build the developmental scaffolding that she needs to interact with others in Floortime but progress is sometimes maddeningly slow. Hallie is still pretty reluctant to do imaginative, pretend play and especially has trouble 'acting out' other characters. She will often set up her doll house family or her Wonder Pets figures in various configurations but is resistant to the idea of having them play out a scenario, for example. And she needs to be able to do these things so that she can understand perspectives outside of her own.

So how are we going to handle all of this, other than panicking (which is of course a strength of mine!)? We just started Hallie in private speech therapy and so hopefully this will help a bit. We are also going to try to get her into a social skills/peer buddy class (preferably the inclusion one run at her preschool in the afternoons). This is one of those expenses that will be completely out of pocket and a bit hard to swing. The ideal would be a three-times-a-week group but we'll settle for once a week if that's all we can swing. We'd love to get a social skills group included in Hallie's upcoming IEP, but we don't have a huge amount of faith that Elwyn is going to give us what we think Hallie needs (even if there are a lot of evaluations that tell them that a social skills groups is appropriate for Hallie). At least, they won't give it to us without a fight is my bet.

The other thing that we are going to begin doing this week is an Integrated Listening program. We are pretty sure that Hallie has Central Auditory Processing Disorder and that this keeps her from making sense of what she hears. Hallie's hearing is fine, but she has trouble filtering out significant sounds from insignificant sounds. At least in part this is because her ears don't coordinate well enough with one another. Integrated listening is supposed to help with sensory integration generally. And we are lucky en0ugh to have a cousin-in-law who is an OT who has lent us her integrated listening materials so that we can give this program a try at home. Hallie loves wearing headphones and is particularly excited about the spiffy new Sennheisers that we've gotten her for this purpose. I'm pretty sure she's the first kid under 4 on the block with her own audiophile headphones.

So we're working on things. But I'd be lying if I said that all of this is not frustrating. Hallie is making a lot of progress. She is beginning to work on her emotions, which is fabulous because she is often more engaged with others than she used to be (even if that also means she's frustrated a lot more and occasionally given to manifesting her aggression by knocking down her little sister or exploring the implications of ramming her play shopping cart into the other kids at school). But we also know how much of a struggle things are for her and how quickly things tend to fall apart , particularly on days when she does not get quite enough sleep, enough food, is having a reaction to something she's eaten, etc.

But we'll keep on keeping on because that's what we do best around here, and we'll try to remember that, even though Hallie is far behind in some respects, she's advanced in others and that, hopefully, the work that we are doing will help her close this gap.

Tunnel of Fun

One of the things that the kids really enjoy doing around here is playing in various pop up structures. We bought Hallie a playhut with several tunnels that she had a great time turning into a ball-and-stuffed-animal pit; the 'house' sadly met its demise, recently, after some particularly active rough housing.

But never fear: we have lots of other play structures that have filled its void.

The favorite ones right now are a collapsible tunnel that we picked up at Gymboree and a pink princess castle that Hallie chose as a post-GI appointment gift at CHOP back in December. The latter requires adult assembly (it is kept standing by a series of complicated tent poles that are a bit of a pain to place in the proper location) but Hallie can grab the tunnel from the place where it's kept (behind our couch in the living room) and open and close it on her own (not that she really ever does voluntarily close it, but she could if she so desired).

Anyway, Hallie and Lea often have a blast chasing each other through the tunnel and Taylor, Renee and Kim's 20 month old, joins in on the fun when she is over for her weekly spaghetti dinner. Indeed, the tunnel chase game began when Hallie started to play "Where is Boo Boo?" Boo Boo is Taylor's nickname) one evening a few weeks ago. This game has now morphed into "Where is Lea?":


Here's a shot of Lea being quite silly:

And here's a cute shot of Hallie and Taylor in the Radio Flyer wagon:
The three girls are so cute and enjoy each other so much. We feel lucky to have Taylor, Renee, and Kim in our lives!