Monday, May 31, 2010

Pool's Open!

We made our first trip to the pool this afternoon. It was so hot today, and the water felt marvelous, let me tell you. Both girls were so happy the entire time in the water. Imogene sat in the baby pool in Bill's lap and played and played. She was also really happy with us holding her in the big pool, and didn't even mind getting soaked and splashed. Lily's performance at the pool shows how much has changed with her since we were there last in September. She jumped right in the baby pool and "swam" around. In the big pool she just clears 3 feet, so she and her two friends held onto the side and walked around! This is great for the weekdays when I take the girls to the pool by myself, because Lily can at least get in and out by herself. After we ate supper she and Lucy went and "hung out" with some slightly older kids who were chasing a little lizard around. She's really such a social kid these days. Our friends the Bennetts were there. Their son is Will, so Lily calls him "Will Bennett." (As not to confuse him with Will next door, of course.) She was so excited to see him. Practically yelling, "Will Bennett, what are you doing here? Will Bennett, stand up. Will Bennett, I want to talk to you. I want to tell you something." His response, "Lily, no. I'm swimming!"
She told someone recently that she was old enough for her belly to show in her bathing suit! :)

Such water babies these two are!

What a busy weekend! I'm definitely tired, but so happy and thankful for such a fun-filled holiday weekend. And so thankful to have celebrated our seventh anniversary with our precious girls. Lily told us "Happy Anniversary" several times. And on the way home from the pool she was so tired and mumbled something about happy pool day, happy memorial day, happy day... Happy Day it was! 

Happy Anniversary!

Bill and I are celebrating 7 years of wedded bliss today. 
These are the very lovely flowers he got this weekend to help celebrate! 

We went to see more beautiful flowers at Green Springs Gardens which is a Fairfax County park. Absolutely gorgeous setting, but buddy is it hot today! Lily helped me take some great pictures of the many varieties of flowers they have there. 
She also pushed her baby doll around almost the entire time!

Lily took this one...
and this one as well.

She also took this one!

I am such a sucker for a hydrangea.

Imogene is pointing at the waterfall in the middle of the pond there. 
I kept seeing jumping fish, and Bill finally saw one. Then I told Lily  "watch in that area and you'll see fish jumping up." She pauses for about 15 seconds and then says, "or maybe not"and keeps walking! 

The other day she asked if we were going to "keep Imogene forever and ever. Like, will she be part of our family for always and always?" "Yes, Lily she will be." "Oh that's good. I think she's my best baby sister I've ever had." 

Sunday, May 30, 2010


These are my attempts to capture how pretty Lily's hair looked after her haircut and blowdry yesterday. She and I went together and went out to lunch afterward. It was a very nice time - and Bill & Imogene had a great time together too at the Farmers' Market and the grocery store. Lily did not want to wear a ponytail today because she was afraid she'd "lose her haircut."

Playing croquet in the yard with the boys.  (Or her "brothers" as Grunny calls them!)
Pay no attention to the "half-dress" she is wearing. She borrowed it at Lucy's on Thursday, and I had to wash it so that she could wear it again. The straps will not stay up (it's way too big!) but she insisted on wearing it yesterday. I remember that feeling of borrowing clothes from a friend. Don't know why, it just felt really special! 

Wheel Day 2010

For many, many years, our neighborhood citizens' association has held a "Wheel Day Parade" the Sunday before Memorial Day. We've watched it a couple of times, but this was our first year in the parade! People decorate their bikes and strollers and wagons in all sorts of ways. Four girls in the 7-10 category were "Rolling Thunder" (the annual motorcycle gathering that comes to DC every Memorial Day), complete with (fake) tattoos. Both Lily and Imogene were very happy the whole time, and patient in the wagon, despite how very hot it was. A "Lily" in the four-year-old category won "Cutest Wagon." We weren't positive it was us - we ended up with 2 entry numbers - but we took the prize anyway, which was a ribbon that said "Outstanding." Perfect! 
We off to the parade! 
We certainly thought it was the cutest! :)

This hat fits her perfectly. It also fit Lily perfectly when she was 5 months old!!!! If that doesn't tell you how much smaller Imogene is than Lily was!

Lily woke up this morning at 6:15 am. That's about the earliest she's woken in over a year. I wasn't sure she'd make it to 3 pm, but she fell asleep watching sports with Bill before we left for the parade. First nap in over a year I think. Thank goodness!

With Will (who also won an "Outstanding" Ribbon for his fire truck entry.)

Who are the crazies that think she looks like mommy?

Watching the "awards" through the fence at the playground.

She tried hard to get through! 

Friday, May 28, 2010

Zoo Trip

We had a great trip to the zoo this morning, despite the fact that every single school in the entire Washington DC area must have had a field trip there today. We even saw a class of 4 year olds from Westminster! The weather was nice and cool (despite Lily's outfit telling you otherwise!).
We saw two tigers and three lions. 
The cool weather brought lots of animals out to play!

She's fascinated by this...

The O-Line. That's an orangutan 45 feet up in the air. No nets - they just walk on wires that are hung in between tall towers, until they get back to their play-yard. Amazing!

We love the elephants! The zoo is undergoing a huge renovation for the elephants (and I think we'll get our giraffes back.) It won't be open until 2011!

This is either Tien Tien or Mai Shain. Just napping on the rock all sprawled out. Our family is still sad that their young panda, Tai Shan, had to go back to China, per the agreement between the zoo and China. That was fun trying to explain to Lily!

Imogene danced and danced in her stroller. It started I think, when she was flirting with Will. Then we all laughed so much at her that she kept it up for another 10 minutes. There is a video of it - which I hope I'll be able to get on here someday!

Lily visits the turtles on our way to the car. What a nice Friday morning! 

Thursday, May 27, 2010

Therapy Action

We tried out the theratogs again today at PT. It's possible we're going to try something similar that achieves the same result for Imogene's posture. Amy & Susan are going to work on it together to figure out the best plan. (as they do with all of Imogene's care, which I love.) Here are some pictures. Next week at OT we'll begin electronic stimulation on her arm. I haven't done much research on this yet. Amy did mention that we'd probably get our own e-stim machine to do this at home too. I'm going to need a therapy closet soon!

With the theratogs.

She looks like she's standing up alone!
(She's leaning on my leg and I'm holding her waist, but she was pretty stable this way!)

Without the thertogs.
(Apparently all the therapists can tell a big difference in her positioning when she's wearing them.)

This is Imogene in her kinesiotape. She tried several kinds - they either left a rash for days after the tape came off, or the tape came off within a day or two. So it looks like the taping is off the list of therapy options.

Pictures from May

Little behind on my pictures!
Look at that face - she knows she's up to something! 

She put Nane to work right away when she visited a couple of weeks ago
 - getting a book out to have read to her as soon as Naney walked in the door.

She's making it a little difficult to turn the pages. 
A few days later, and it's Charlie's turn to read!
 I left the room to get the girls something to drink. This is what I came back to. 
Imogene unloaded an entire box of wipes. I love her face - she knows she is up to no good. You can also see how red her nose is. She's had a cold for over a week now. Poor thing! Her new 'sound/word' is ooohhhh, or eehhh-ooohhh ... her version of Uh-Oh! 

Tuesday, May 25, 2010

One of the moms from the walk a few weeks ago shared this with me!

On the Hill

The American Heart / American Stroke Association along with the Pediatric Stroke Network and CHASA (the parents support/information/advocacy group we belong to) sponsored a briefing on Capitol Hill today. As many of you know my only jobs prior to working for Lily and Imogene were in politics, so I jumped at the invitation to CHASA parents to attend. I went with my friend Erica, who lives just a mile from us, whose 6 year old daughter is also RHCP. Admitedly, my expectations were low. I remember these sessions being advertised when I was working in the Senate, and they were almost always attended for the most part by interns and low-level staffers. Erica and I also wondered if it would just be parents! We were wrong! For starters, the meeting took place in the new US Capitol Visitors' Center. It's a gorgeous building built underneath the ground in the open space between the Capitol and the Supreme Court. The meeting was well-attended by staff and there were even some media there. The "panel" included the chief of pediatric neurology at Nationwide Children's Hospital, Dr. Steve Roach( -he also was the lead author on a 50 page study on pediatric stroke that you can read at  The next speaker was a board member of CHASA - mom to a 3 year old who had a stroke in-utero and has hemiplegia. Then was a 12 year old stroke survivior, also with right hemiplegia, who has spoken on Capitol Hill 4 times since she was 8 years old. I would have sworn this girl was in college. She was very well spoken, almost too grown-up - the way she was dressed and the way she spoke. The final speaker was the mother of a stroke survivor with hemiplegia who has started her own advocacy group. I really admire her for the gumption to do that - and to devote her time to that in additon to all that goes into having a child with cp/hemiplegia. She was just really angry at son's doctors for not figuring it out, and not listening to her concerns. I cannot imagine what that would have been like - especially if you believe, as she does, that those 19 months before his diagnosis were costly in his habilitation. We were so lucky to get such an earnest and quick response from Dr. Baldrate and Dr. McClintock. I imagine we're lucky, but I also think bashing doctors isn't exactly the way to get people to hear your message about pediatric stroke awareness. So at the end of the question and answer I felt compelled to share just two sentences about our experience and thank people like our pediatrician and neurologists like Dr. Roche. I just felt like people there needed to hear that some of us got the best, and quickest diagnosis we could have, and are still dealing with all that goes into dealing with a child with hemiplegia.
So anyway, I wouldn't say I learned anything ground-breaking about stroke or hemiplegia. I didn't know that more children have strokes than have brain tumors. Yet of all the millions of dollars spent on pediatric brain tumor research, only a single percentage of that is spent on pediatric stroke research. Dr. Roach told me afterwards that when he began writing a book in the 80's on pediatric stroke that most of his colleagues actually questioned who would need to read it. Certainly, times have changed, but more awareness is certainly needed. He made an interesting point about the difference an adult who survives a stroke at age 65, and a child who survives one as an infant. That adult may only deal with the resulting disabilities for an average of 10-15 more years. That child is looking at more than 65 years of disability. (Kind of reminded me of the mom at therapy, upon learning why IBS was in therapy - "OH YOU"LL be coming here for a long time huh?" gee, thanks lady.)
There's a lot more that I thought about today more than really learned. I couldn't really grasp how I got there. It felt sort of out-of-body. How did I end up at a pediatric stroke briefing on Capitol Hill? How am I the mom standing up talking about my daughter who has cerebral palsy? Seriously, whose life is this? It's my life. I'm so blessed by this amazing baby who is such a doll, and was giving out tons of kisses today - who gave Miss Patty (Maggie's mom) a high five with her right hand! Who is so tickled to see her reflection in the rearview mirror while she's face-forward in the car that she screams da-da-da-da (her version of baby I think.)  And her sister who loves her to pieces. That sister, who makes me laugh every single day. In a way, perhaps this is just where I should end up. The CHASA board member, upon hearing that I'd worked in politics, asked me if I'd be willing to work with CHASA on the lobbying/political aspects of what they are trying to do. It sounds really daunting, but I'd love to be able to take my former work-life and combine it with my current work-life. As PT Susan said, the best kind of job is the kind you can put your heart into.

Monday, May 24, 2010

Little things

Grunny and Charlie arrived last night for a quick visit. Lily said I could stay with her at her ballet class, since Grunny could keep Imogene. She's so sweet isn't she? So I stayed, which was fun. She gave me the happiest, biggest smiles during class. She was especially happy to have me there because her teacher made her the line-leader during most of class. Lily loves to be in a place of honor. I was happy to see that Lily really does enjoy ballet, and not to toot her horn, really pays attention and listens to the instructions. She's just the right age for the class. It was also good to see that her obsession with watching herself in the mirror is not vanity, it's being 4. Everyone of those girls was craning their necks to watch themselves in the mirror. Too funny. They each walk around in a circle with a wand and do a "ballet walk." The instructions are to hold your arms out-stretched, with your held and chin held high. This turns into walking with your eyes on the ceiling and almost falling over because you can't see where you are going!
One of our favorite places to eat was closed recently due to failure to pay taxes. I tried my best to explain this to Lily. When we noticed over the weekend that it was open, Lily said, "Yeah the smoothie place finally paid the man!" Apparently, she understood perfectly.
Imogene had a good check-up today with Dr. Baldrate. She is 20 lbs 6 oz, which is still 7th percentile. It's the "still" part that is a good thing. She isn't gaining much, but she isn't falling down the chart. The fun part was that we could turn her car seat around to face forward now that she is one year old AND weighs 20 pounds. We went on a quick ride up to the park this afternoon. She was pretty tickled and kept looking around like with this face of surprise and a little confusion. I absolutely adore Dr. Baldrate. She is such a helpful, pleasant person - what good fortune we had to be her patients! We'll see her again July 8, for Imogene's 18 month check-up and surgery pre-op. Lily goes to the ENT on June 11 for her follow-up. Imogene's surgery is July 19. Amazingly, those are the only appointments we have this summer (not including therapy). I'm sure I just jeinxed us.

Sunday, May 23, 2010


I forgot to update an interesting therapy session. Lately PT has been pretty rough on Imogene, on me, and on Lily. Lily wants so much attention during PT, and I just can't focus on her, and Imogene who cries through a lot of the 50 minute-session, and it turns into me being crabby and not really being with either one of them. More like I go away in my mind to a nice, quiet little island where it's just me and a couple of books and some sweet tea...and okay sorry. So anyway, I set up a playdate for Lily on Thursday, and Imogene and I went alone to PT. It went so much better - as I expected it would. Imogene even tolerated wearing "theratogs." You can see them on their website, - so you can get an idea of what it looks like. Basically I kept waiting for Susan to put Imogene in a pool, she looked just like she was wearing a wet suit. At one point I asked when we were going swimming with the dolphins. The tagline is "therapy you can wear." According to their website they were designed for children with complex neuromuscular disorders like cerebral palsy. (Even typing that, it hits me that Imogene actually has a "neuromuscular disorder." Still so weird to believe this is our life.) Here's their description of what theratogs do - "the system wraps the torso and lower extremeties in a velcro-senstive strapping field that allows the clinician to attach straps that can improve postural alignment and stability." That's EXACTLY what Imogene needs, and according to Susan it really worked. She could tell a difference in her posture right away. Too bad that they are ridiculously expensive. Susan said she'll start brainstorming as to how we can replicate it on a regular basis. In the meantime, I'll be setting up a lot of Thursday playdates for Miss Lily. It's way more fun for her to be doing something with a friend anyway!

Saturday, May 22, 2010

Saturday Night's alright for Blogging...

Yep, I'm blogging on a Saturday night. Bill's settled in for the Celtics game, so I'm doing a little catch-up. This has been a quiet week by our standards! I am feeling a good bit better, but still really congested. Poor Imogene has the congestion too. She is not a fan at all of having her nose wiped. It was finally warm at the end of the week, and we were able to get outside. Being able to go outside in the afternoon makes such a difference in the outlook of the day! Lily has been hard to deal with lately. Not sure what to make of it, but she just hasn't been herself. You can ask her to do something until you are blue in the face and she just won't do it. One of the recommendations her school director had to help her focus more was to have her race against the clock when we give her tasks. That works, and it works well. She was all a mess, whining and fussing tonight about me putting her pajamas on, and as soon as I told her I bet she couldn't do it herself in 2 minutes she was on her feet and in those pj's! She can be so sweet and so dear, so it's especially frustrating when she's so frustrating! I love it when she tries to help Imogene with something and mimics me, "it's okay sweetie. here you go sweetie. oh I just love you little baby sister. you are my most favorite little sister." I may have already written this, but last week she was singing "I love my dad, I love my mom, I love myself, and i love my sister."
We were playing in the backyard and she had us playing softball (not baseball she said). She was the pitcher and she would swing her arms all around her head like she was winding up. Then she looked at Bill and said "daddy, don't look at my face, keep your eyes on the ball." "And when you get a hit, run around the bases (which weren't there) and then you run home. Home is Mommy." She really enjoys sports, especially when she's playing with the boys next door. She sat and watched college softball this afternoon by herself for about 20 minutes.
Lily is also obsessed with her various and always-changing imaginary friends.  She gets so involved in their stories and how she's going to see them at their birthday party, and on and on. It kind of makes me sad that she'll never actually get to do all that she plans to do with them! There is Curlia, Shirlia, Arlia ... usually made up names. They all have siblings who are older - usually 13 1/2. The past two weeks she's made me call her Charlotte a lot. Imagining her own imaginary name! Wade and Will both rode in the car with us this week, on separate trips. Those poor boys. Lily absolutely did not stop talking the entire time we were in the car. I know she comes by the constant-talker trait naturally from her mother. But when she has a friend with her, it's like she thinks they have just arrived on planet Earth. "Okay Will. Now my mom is going to drive the car. She stopped the car, and when she comes to the door we can get out. We're going to walk across the street now and go into the ice cream store. We'll get ice cream there." Will is her age, and he just sits and listens to her, bless him. Wade is 7, and tried so hard to get a word in himself, but Lily just kept right on talking.

Imogene is doing so well (despite her cold.) She's starting to cruise around the furniture a little bit - just a few steps here and there. Today she was trying to hold two balls, and stretched her right hand open as much as she could to try and hold the ball. Such recognition on her part that she already had a ball in the left, so she had to use the right. She really understands so much. Tonight she was ready for dinner, and she kept crawling out of the TV room and looking at the rest of us like "COME ON!" I asked her if she was ready to eat dinner and she nodded her head and shook her arm in front of her. That's her version of the sign-language "please." We go to Dr. Baldrate Monday morning for a check-up. Usually you only go at 15 months and 18 months, but Dr. Baldrate likes to see her every 6 weeks, mostly to check her weight.

Wednesday, May 19, 2010

Under the Weather

Mommy is not feeling all that well this week, so sorry for the lack of blog postings! I have this precious video of Imogene dancing in a chair the other day, but I cannot get it posted here! Promise that I will work on that. We've had an uneventful week, which is always nice in our family. It's been cold and rainy for the last few days. Bill had a great trip to Chicago and Milwaukee to see baseball games last weekend, and Naney came to help us out here. I'll update more on that soon. Just wanted to let you 10 loyal readers know we're doing fine, just not so full of energy this week!

Sunday, May 16, 2010

More Pics

Two amazingly cute pics that my friend Tracie took the other day!

They're going to Georgia!

Many of our readers have become readers of the Moss Family blog. Stephen, Lindsay and Sydney have become very dear friends of our's over the last year and a half - seems like longer! We met them through Westminster (from which so many good things, and friends, come!). Lindsay and I have become kindred spirits for many reasons, one of which is that we both have binders full of medical information for our daughters! But even without our medical-binder-bond, I'm sure Lindsay and I would have become fast friends. We said good-bye to the Moss family today, as they are, as Sydney says, "going to Georgia" tomorrow. Stephen & Lindsay are both from the Atlanta area, and Stephen starts a great new job next week there. I'm so happy for them to be closer to the their families, their beloved Bulldogs and more sweet tea. But I'm really heartbroken to be losing such a good friend. I told her today that there is no way I would have made it through this past year and a half without her, and I truly mean it. I believe we're all blessed with special people that come into our lives just when we need it, and Lindsay has been that person for me. We wish them all the best in Georgia and can't wait to see them again soon.

Thursday, May 13, 2010

And Another

Yep, we're adding another therapy session to the schedule. Several people including Susan the PT, and the neurologist had suggested that we go through the city's programs to see what services they would recommend Imogene receive. After completing all the evaluations and the mountains of paperwork, we're finally done. At first I was really just going through all of this so that we'd be in the system when Imogene got to preschool age. At that point there are federally-mandated services that she would receive free, and I wanted to have her in the system before we got to that point. It seems like a lot of people end up not knowing they need the system until around that age. So anyway, I was all prepared to just decline their services until a later date, since we are very happy with our PT/OT therapists - if not so happy about going there twice a week. But the city speech therapist agreed that Imogene's communicative skills are behind (at about 11 months, when she's almost 16 months) and recommended regular speech therapy. Receptively and socially they said she's right on track. I had been trying to get our "regular" once a month appointment for speech on the calendar at the therapy center, but they are booked solid for the foreseeable future. So I'm taking forever to explain this, but we're going to do speech therapy with a private speech therapist (set-up through the city) twice a month. In the end, I have to say that I am happy with the way it turned out with the city - until I met the coordinator this week I would not have said that - so I'm hoping to be pleasantly surprised with the speech therapists. If we're not, then we'll just find something else. She has a few words - "dada" and "doh" for dog are her best. She's started making an "ohhh" noise when something falls. She says "mamamama" but it's not as consistent as "dada." Every time she sees Bill or a picture of Bill she says it. She does say something akin to "hi." But she's not really making many other consonant sounds. She also isn't imitating any sounds we make. At this age, Lily repeated almost any sound you made. Tonight though, I swear she tried to say "woof woof" when I asked her what the dog says. It was more like "woo," and she had her top teeth completely over her bottom lip, but it was something! I think the speech delay is bothering me more than the PT and OT - maybe because Dr. McClintock had specifically told us he didn't foresee any speech problems. Maybe it's because Lily has always been such a talker. Maybe I should remember that you just can't know for sure what's going to happen - you just take each day for what it is - not yesterday, and not tomorrow. Just today.

I've been remiss in updating Lily's hearing issues. We saw a nurse practitioner at the ENT's office. She saw the fluid, and recommended we treat her for allergies for a month before doing anything else. So we're giving her Flonase at night in addition to her other allergy medicine. We go back June 11, and they will give her the hearing screening again. If the fluid is still there, she'll need tubes. If it's not there, then we assume it was allergies. I have to say I'm pretty skeptical that it is allergies causing the fluid, because I've noticed her hearing being 'off' since way before allergy season. But I hope I'm wrong.

Sunday, May 9, 2010

Happy Mother's Day!

Of the last four meals I've eaten, three were cooked and cleaned up entirely by my husband, and the other was eaten in our favorite restaurant. Such a lucky lady! I have to say that Bill has really treated me so well today in honor of Mother's Day, but he really does this stuff all the time. I never feel like either of us are really doing "more" than the other. Sure, certain things tend to fall to one or the other (for some reason he always ends up unloading the dishwasher, and he's the one that makes our bed every morning). But he did make me feel very special today, and Lily was very sweet (almost all day - except the part where she screamed at me about getting ready for church and called me a "Bad Man.") She came into our room at 7:45 (which is early for her!), hugged me and said "Happy Mother's Day Mama." Imogene slept until 7:45 too, which was a huge gift to Bill and I both! I really have thought a lot this weekend about being a mom, and what a gift it is. Despite the chaos I feel like we're living in these days, I truly wouldn't trade places with anyone else in the world. These two girls (and you too Bill!) are just an amazing gift from God. Hopefully I'm doing right by them each day.
We went down to the National Mall/Memorial area this afternoon to feed the ducks. We drove around for a while looking for parking, finally found something, got out of the car and there were two ducks sitting right in the grass. Perfect!
These ducks would have eaten right out of our hands. They came a little closer than I would have liked! 

Imogene loved, loved, loved the ducks. She was calling at them and reaching for them. She might have thought they were some form of dog that she could pet? But she was just tickled to death by the whole experience. She wanted to throw the bread too, but she mostly just dropped it right in front of her. 

See how close they got?

We walked over to the water, and found two other very feisty ducks who tried to hurt each other. I was also really worried about Lily being so close to that not-so-safe railing! 

It was so windy today and yesterday. Here's proof of just how windy it was...
Fortunately, this tree fell backwards and not to the right. If it had fallen to the right, it would have certainly landed on our house, and probably right into Imogene's room. However, it would have crushed that deck furniture we tried to sell at the yard sale, and have hoped someone would just take out of our driveway! But really, the fact that nothing serious happened when that tree fell, and that it's on the property of the apartments next door is some needed good luck for us!