Monday, August 31, 2009

Maybe it was because of the wonderful 'early fall' weather, but we had a great day today. Or maybe it was because Imogene took two good naps, after a night where she was up crying from 11 pm until 2 am. But it could have been the weather.

Imogene is usually very friendly to strangers, as long as they don't try to hold her. She smiles her big teethy smile and then buries her head in my shoulder or arm and laughs. It's too cute.
She is so in love with one of the regular staff members at a local frozen custard place called "The Dairy Godmother." We go there a lot because it is so darn good - even when you can't have dairy! They have wonderful sorbet as well as this sinfully good sundae called a Dusty Road which is chocolate custard with malt powder and fudge...hmm, wonder what time they close?... So anyway, Imogene has seen this one guy at least once a week since she could hold her head up a look around. She goes bananas excited when he talks to her, and he tells everyone in the shop that she's his girlfriend. A complete flirt at 7 months!
The funny part for me is that he looks just like DJ Lance Rock from this bizarre (in my opinion) show called Yo Gabba Gabba on Noggin/Nick Jr. I would like it known I did not actually know he had a name until I looked it up. Can any parent out there explain the deal with the YGG show? Lily doesn't love it like Max & Ruby or Pinky Dinky Doo, but she'll watch it. For the life of me I cannot explain to you why. It freaks me out that show!

Yesterday Lily and Bill were in the hardware store and she asked to carry the lightbulb for him. "I want to help. I'm the big sister and big sisters are good at helping."

One of my favorite times of the day, for many reasons, is when Lily says good night to Imogene. This usually occurs as I am nursing Imogene, and Lily is headed for books and sleep with Bill. Oh the glorious nights when Bill is home for bedtime! Lily gives Imogene a kiss (or 20) on her head and whispers things like "I love you little sister." "Sleep tight sweet Imogene." "I hope you have a nice rest." "Don't let the bed bugs bite."
It is just the dearest thing to watch and to witness.
Tonight she said "Let me kiss her little hand. I hope you find your right hand, Imogene."
Oh my goodness, these girls and my heart!

Sunday, August 30, 2009

It's a Date



The Radiology Department at Children's Hospital called Saturday afternoon to schedule Imogene's MRI. I immediately wondered how busy this place is if the scheduler is working at 4 pm on a Saturday. Again, we pick some popular medical providers. Their first available appointment is October 6 at 2 p.m., which at this point seems so far away, it might as well December 6. I did ask her to put us on the cancellation list. Looks like I'll be doing that a lot! At least it is on the calendar, and we know that by the end of October we'll have a better idea of what we're facing.

Saturday we finally head to the beach for our family vacation to Litchfield Beach in South Carolina. Poor Lily might go a little crazy this week before we leave. She has waited on this trip all summer.

Lily, when her hands are full but she'd like to try and carry something else, "Can you help me? I don't have so many hands."

Only 14 days until school starts! Not that I'm counting or anything.


Friday, August 28, 2009

Yesterday was day 2 of physical therapy. PT Susan was not surprised by the diagnosis. This was what she suspected from our first visit. So...Susan did some more testing with Imogene to get a more thorough assessment and we received our first of many 'homework assignments.' One is very fun, it just involves gentle compression on her shoulders, arms and legs. Yes, please, any excuse to squeeze on my baby! The other helps her learn to roll to the left using her right side, which is hard for her since her right side is so weak - speaking of which, we think she is waking up so much at night because she's getting stuck with her right arm on the wall of the crib, and can't get back on her belly to get comfy. But I digress, The other two homework assignments were to get a binder started to keep up with all our paperwork from our various visits to doctors and therapists. Hello! Don't have to tell me twice to buy something to get organized. I love organization and all the stuff you can get to help with it! And finally, to call our city Parent Infant Education office ("PIE") which provides services for families in similar situations to us. We may not use their services yet, but at least need to get in their system.

I'm finding that we've picked some popular people for our team. PT Susan's schedule is completely booked, and this week and next, she just fit us in on cancellations. Yikes. Granted, it's only been two visits, but we're so happy with her, and Imogene is learning to be comfortable around her already. Susan really wants to have Imogene as her patient, so we're hoping she'll be able to work something out.
Dr. McClintock told us to come back for a follow-up post-MRI in October. That would work, except that he's completely booked for the entire month. Good thing I've already made friends with Gloria, the scheduler in his office. We worked out a plan for me to call her when the MRI is done, then 7-10 days after that, when the MRI results are back, she'll start looking every day for a cancellation. She'll probably call us in the evening the day prior to the appointment. Sheesh. I am a planner, and I like to know when things are going to happen. Going to have to let that go on this one!

Lily watches a lot of TV. There, I said it. In our defense, we've been exhausted for 7 months and 13 days straight. Not that I'm counting. But today, while watching "Little Bill," she learned to sing "This Little Light of Mine." It's the sweetest thing and she's so happy while she sings it, that I'll trade the joy in her face for the guilt I feel about how much tv she watches.
Also adorable, she loves listening to Taylor Swift over and over and sings along with the CD. I love TS, so this is fun for me. Bill, not so much. Neither of us are fans of the KIDZ Bop cd she got in a McDonald's Happy Meal!

Other funnies from Lily...
"Hey mom, I'm just gonna go catch up with these guys." as if she was 14.
"Hey there leftie." talking to Imogene. I took this as a term of endearment, because she gets so excited when Imogene does anything with her right hand.

Wednesday, August 26, 2009

Wednesday

I feel like saying out loud how wonderful all of our friends and family are. I am not sure that I'll ever be able to express how much better this last day and a half (is that all it's been?) has been because of the phone calls and emails we've received. Hope y'all will continue to be patient with us, and there for us, as we maneuver our way through this new part of our life.
Also, I should say out loud that I feel blessed by the luck we've had with the 'team' already working for sweet Imogene Blanche. We both feel very comfortable with Dr. McClintock and PT Susan, and our pediatrician, Dr. Baldrate- what an angel. She called us today, and traded calls with me until she got a hold of me to see how yesterday went. Dr. Baldrate has two boys, each a little older than our girls. Her second is a challenging sleeper, like our baby girl! We've bonded with her in a way, and I was comforted very much by talking to her tonight. She said many things that reaffirmed the optimistic attitude we're taking, and reminded me how happy I am she's on our 'team.'
Speaking of sleeping, when we asked Dr. McClintock if the CP could be causing the 'sleep issues' Imogene has, he promptly said no, and suggested "Solve Your Child's Sleep Problems" by Dr. Richard Ferber - which is basically the theory that children need to learn to sleep on their own without any 'aid.' Lily is a great sleeper (knock on wood) and learned to put herself to sleep pretty easily as a baby. Boy did we not have a clue how good we had it then! Imogene wakes at night, at all hours and intervals of the night, and is hysterical. Nursing is usually the only way she'll go back to sleep. We know that this isn't the best thing for her, but good grief we're tired and it's easier on our heads and our hearts than hearing her cry. But we're going to give some of the suggestions from the book a try tonight.
In a way working on her sleep might be cathartic for both of us. I think we're feeling a little helpless that there isn't much we can do for Imogene right now in terms of the CP.
Except, yippee, physical therapy! We go tomorrow, and I'm really excited about it. It's an 'action item' I like to think, a way to fight that CP and help our baby girl.

And then there's poor Lily, who cried and cried and cried hysterically tonight at bathtime/bedtime. We think we figured out the reason had to do with wanting the toys from the movie "Cars." She 'needs Ligtming Mahqueen and his truck" What she needs to go back to school and get some more mental stimulation!! Also wondering if she senses the stress in both of us because she has been a looney-toon lately!

Tuesday, August 25, 2009

A Diagnosis

Let me start by saying that this really is the best bad news we could have gotten about Imogene's arm and leg.
We saw the neurogolist, Dr. William McClintock at Children's Hospital today. We liked him just as much as the physical therapist, thank goodness!
He has diagnosed Imogene with a mild case of cerebral palsy. It is likely a form called hemiparesis, which affects just one side of the body. Her right arm is more affected than the right leg, but both are involved. He did say that cognitively she looked great, and didn't seem worried about any mental development issues. He has ordered an MRI to determine just exactly which type it is, and I guess the severity? (this probably won't happen for another month with insurance approval and scheduling). He was very positive that this is a mild case that will be helped greatly by continued physical therapy, but will give us more of a prognosis once the MRI is completed.
We are trying to stay very positive and optimistic - it's the best attitude we can have for Imogene. Part of me is pretty sad that she has anything wrong with her, but know that we can only give her the best that we have, which is love, support and lots of hugs and kisses!



Just had to post these pictures of Imogene laughing at her sister this weekend.

Friday, August 21, 2009

Hard Knocks

We are not reality TV watchers in our house. There's enough going on in our lives without worrying about somebody else's drama! And as for me, I just don't get into the NFL. College football, yes ma'am from morning 'til night. But NFL, no thanks. However, put me in front of a reality TV show about the NFL, and I'm all over it. Enter HARD KNOCKS on HBO, which follows a different NFL team during training camp each season. I cannot explain it, but I love that show. Of course we have to watch it ONDemand, because goodness knows we cannot stay up past 10 pm! This year's season follows the Cincinnati Bengals, who were terrible last year (4-11), which of course I had no idea until I watched the show. Tune in! If you stay up past 10, you can catch it at 10 pm on Wednesday nights.

Thursday, August 20, 2009




More than an Arm

We've been to the physical therapist with Imogene. Her name is Susan (so many Susans in our lives!) and she was wonderful. Her evaluation was very thorough and she was so good with Imogene. Imogene had the time of her life drooling and chewing on toys and looking at herself in the big mirror.
We had suspected it, but Susan confirmed that whatever is going on in her arm is also going on in her right leg. She also wondered if there was something in her trunk/torso, but couldn't be sure. Susan did say that she was glad we were going to see a neurologist, but no matter what we learn there, the therapy will be the same. So, for the foreseeable future we'll be going to the Children's Therapy Center in Springfield, Va once a week. Lily will go with me sometimes, and I think she'll enjoy being the great big sister that she is. Our next appointment is Thursday the 27th at 11.
Today we saw our wonderful pediatrician Dr. Baldrate for a consult on the eating and sleeping Imogene is not doing :)!! It was so nice to just talk to her and see what ideas she had. We're going to try to get Imogene to eat twice a day, whatever she'll eat. AND we're going to work on getting her to take a bottle or a sippy cup! Wouldn't mommy be so excited if that happened. I love that baby, but a night off from bedtime would be heavenly right now.
And now we wait. Tuesday at 11 am is our appointment with the pediatric neurologist, Dr. William McClintock with Children's Hospital. Waiting is just not fun.

Sunday, August 9, 2009

Lily

Some 'Lily-isms' from the last few months...

* We got a new car about 6 weeks ago. It's the same car, just a new model. Lily was pretty excited about it at first. But lately she's been a little sad about our old car, especially that someone else is driving it now. "Mom! I know what we can do. The fairy and I will do a magic spell and turn this car into our old car and make it green again!"

*She wanted to carry Imogene around the house the other day. I told her about how they both had to get bigger, and somehow I ended my answer with 'then you'll be in good shape.' Lily's response: "Yeah, because right now I'm really a rectangle. And Imogene is a circle."

*"I want Imogene to grow so she can be a big sister like me."

*"Will Imogene be my baby sister forever and ever? For my whole entire life?"

*First thing out of her mouth when she woke up one morning: "I have basketball camp today. You will need to take me there and then I'll eat my lunch and the bus will bring me home."

*Very into teeth falling out (our neighbor just lost his first tooth) "Oh gosh. I forgot to put my tooth back in. Here it is." "Oops, there's my loose tooth again." "Mom, how many tooths have I lost?"



Friday, August 7, 2009

Imogene


We enjoyed a wonderful weekend of family and friends last weekend for Imogene's baptism. Of course we woke up that morning an hour after I had planned (thanks to being up with her a bunch over the course of the night) and I was in a panic that I wouldn't get it all done before we had to leave at 9:30. Sweet Bill reminded me that I get like this every time we host anything in our house. We didn't leave quite at 9:30 and Imogene hadn't taken a nap and it was pouring down rain but we all made it in time to be in our seats before 10 am!

Imogene did great during the actual baptism. She wasn't a huge fan of the water on her head, but did well when Casey walked her down the aisle. Thank goodness my mom got her a 'pew doll', a beautiful lace doll that kept her very entertained, and didn't make any noise. Who knew such a toy existed! She had to be 'taken out' by Naney and Aunt Susan for the remainder of the service - but we even got a family picture taken after the service.

The baptism itself was special for us because of the wonderful community we have at Westminster. It really felt as if Imogene's extended family was welcoming her into God's love and care. What care Westminster has provided to us these last 6 1/2 months. And for our friend and pastor, Casey FitzGerald to do the baptism, well, it was just a great day.

One of the topics of conversation of the weekend was Imogene's right arm. Naney had noticed it, and well, I guess I hadn't, but something was not right. Imogene uses her left arm for everything, and only uses her right arm/hand when the left hand needs a little help (usually this is help getting said toy/shirt/other person's finger/spoon) into her mouth.
So Thursday we were at the pediatrician for Lily to have a blood test (complete side-story, she showed a low platelet count in July when her blood was tested to determine the cause of a crazy full-body rash, all is fine now, nothing to worry about) Anyway, I mentioned that the arm thing was a little weird. Our dear, sweet, wonderful pediatrician, Dr. Baldrate says, "huh, let's take a look" ... runs her through a few tests ... I miss a few minutes of this because of course Lily has to potty and no, she cannot wait even another minute more. When Lily and I return from the potty Dr. Baldrate says, yes, she sees what we're seeing. And I'm expecting her to say, so you know, watch it for a little while and help her out etc. Nope, tells me we need to start physical therapy and see a neurologist. Now, I know that this isn't a huge issue in the grand scheme of life and as far as things that could be wrong go, this one will most likely go away pretty easily, but REALLY? REALLY? Sleep-deprived mothers should be sitting down when the pediatrician says neurologist.
I have left messages with both the neurologist and the physical therapist first recommended. Hopefully we won't have to wait too long to get an appointment. If we do, Dr. Baldrate said she'd do what she could on her end to get us in somewhere.
Hopefully by Monday we'll have some appointments lined up so we can at least find out what is causing the problem, whether it's nerve or just non-use.
Of course now we're obsessed with what she does with her right arm and watch her constantly. Poor baby, it's always something for her!

Here we go...


So lately (pretty much since Imogene was born) I've been walking around "writing" our lives in my head. I've finally decided to start writing them down somewhere that I least I can go back and read them. Hopefully I'll be able to share the writings with the two beautiful girls I'll be writing about each day. Lily's daily life is so interesting to me, mostly because of what she says. And Imogene, well, she's worth writing about because you just don't know what will come next do you?

I know I'll enjoy detailing our lives here, and I hope you'll enjoy reading about our little family.