The Diagnosis

Here is what we found out today. I hope to explain all of it properly. Forgive me if I come back later and edit as we learn. The diagnosis is confirmed as right side hemiparetic cerebral palsy (now known as RHCP on this blog!). The MRI did show an injury/infarction to her brain in the internal capsule and deep white matter on the left side of her brain, hence the right side hemiparesis. (Already I'm not sure that's the proper way you'd describe it, but those are the areas of the brain that are mentioned in the radiologist's report. A Google search of those two terms, while rather medical, gives you an idea of what these areas are.) While this tells us what the damage is, we still don't know, and won't know, what caused the damage. It is likely from an in utero stroke, but also could have been from an infection in utero. By the way, an infarction is a more technical term than stroke that is used to denote a process of tissue injury most often caused by the interruption of arterial blood flow to some part of an organ, in this case the brain. Dr. McClintock believes the damage affects only motor skills on her right side, the arm more than the leg. He believes she will walk at some point, but that her hand, despite physical therapy, will have some lasting 'sign' of the RHCP. He does not believe she will have any issues with cognitive/intelligence and that her speech should not be affected. Also, because of the location of the damage in the brain, her risk of seizure is less than he would have told us before. Imogene's right eye has appeared to wander intermittenly lately, so we'll see a pediatric opthamologist soon. He said that the location of the damage would explain this, and that she is at the age where such an issue would show up. Dr. McClintock also recommended we see a physical medicine doctor, also known as a physiatrist. This is a nerve, muscle, and bone doctor who treats injuries or illnesses that affect how you move and help manage all the different individuals involved in care. Finally, Dr. McClintock ordered some bloodwork for Imogene to test her for a common genetic disorder that runs in my family called Factor V, which affects the body's blood clotting abilities. This test can be run while we are at our regular pediatrician for her 9 month check-up in October. We will go back to Dr. McClintock in March for a follow-up.
So phew, that's what we know from today. I'm sure we will understand all this better as we learn more, and I'll try to share what I can figure out to share! Thanks all of you for your concern and care.

A little story about Lily. We went to the park today with some friends. If you know Lily, she's not always the most adventurous kid. But today she surprised me and rolled down a hill over and over again. She had the best time and was so proud of herself. What fun.

Look at that cute Red Sox hat! Thanks to the DeGuenthers for sending it to her!

We were on duty for the 3 year old room during the church service this morning. Lily's friend Jacob was playing with a toy ambulance that made full siren sounds. Lily says, while holding a doll, "Jacob, please don't make that noise. It's making my baby nervous."

Our weekend was packed with friends, fun, church activities, and a lot of rain - which we were very happy to have on our grass and plants! Lily even went to yoga class today. Granted, it was just Lily and her buddy Lucy and the teacher Patrick, so it must have not seemed too stressful or overwhelming for her. And I think she has a little crush on Patrick. I also wonder if she didn't cry like she does in ballet class because Bill took her to yoga. Maybe she's just testing me with ballet. Who knows!?! I'm just glad she went and had fun.

Imogene was a real trooper this weekend despite being carted all over the place. She even took a little nap in the Baby Bjorn. Who knew that was possible! And she took two great naps today. She has what seems to be the beginnings of a cold, so there's no telling what we're in for tonight!

We just had to share these pictures from our friends Lucy and Lola Jurgensen's birthday party. They had a vintage firetruck come take the kids on rides. Lily usually gets very upset about firetrucks but loved this one, and rode it twice!

Thursday is PT day. We spent a lot of time working on the stages that Imogene needs to go through to get from sitting up to laying down on her tummy. You forget how naturally these things just occur until they don't occur naturally! Basically Imogene needs to learn to put her arms out to 'brace' herself as she goes down to the ground. Right now she just falls over to the side or backward. As PT Susan calls it, she 'crashes and rolls.' PT works in long-term, 12 months from now, and short-term, six months from now, goals. One of her goals (officially long-term but we'll hope for short-term) for Imogene is to be able to bear weight on all four limbs so that she can go from sitting to quadruped (think of a table, or for babies, how you crawl). So we worked on helping her begin to bear weight on the right arm as well as the left. Imogene pulled her left leg up a good bit on her own to get into that position, which was great. PT is both rejuvenating and overwhelming at the same time. I really enjoy getting to have an 'action-item' for Imogene's care, but at the same time, it's in PT that I realize her current limitations the most, I imagine because they appear much more obvious. This is hard to explain, and I'm not really doing the emotion I'm feeling justice. Maybe it's just more 'in my face' at PT. But I'm so thankful for it, and so happy to have things to do to help our baby girl.


This afternoon, bless her, our 'mother's helper' Maggie was here. Maggie is every mother's dream for her child to be around; polite, outgoing, and very good with children. She is an excellent role model, even for someone who doesn't know what a role model is! Maggie is in 6th grade and comes over once a week for a couple of hours to play with Lily and sometimes help me as I run errands with both Lily and Imogene in tow. Lily adores her, and so do I. Another gracious gift in our lives thanks to Westminster Presbyterian!


Lily told me today "Mom, you should change your shirt. I really don't like that green."

Things have been less than pleasant with Lily at times lately. She is having a lot of temper tantrums and meltdowns. Other times she is really pleasant and our same old happy Lily, calling Imogene 'sweetheart' and being helpful and fun and silly and just how she always was. Last year she loved ballet class and had a blast at the "Ballet in the Grass" summer camp. Three times in the last two weeks she has bawled her eyes out during class, even with two of her best buddies in the class. So we're giving up on ballet class for a while. It breaks my heart because I know she loves it once it gets going, but she just can't stop crying to enjoy it. School is going well, thank goodness. She is very happy to be there and is already excited about "going next week for 4 days." This is actually next year, when she'll go 4 or 5 days a week, but sweet thing is trying to grow into one of the "big girls" too fast!

While we were doing Imogene's bedtime tonight out of the blue she said, with her hands in prayer, "Thank you God for Imogene's eating. Thank you God for Imogene's sleeping." She said her friend Emily at school told her to do that. (The irony of her praying and giving thanks for two of Imogene's bigger struggles is not lost on us!) And then later she said to me, "I really love my baby sister Imogene." There's my girl.

For those of you in the area, I invite you to join the Sigler family on November 7 for the BA5K, a race which is held by our friends from WPC, Lindsay and Stephen Moss. They hold the race to benefit the Sydney Moss Fund established to support biliary atresia (BA) research at the Johns Hopkins Pediatric Liver Center. Sydney is Lindsay and Stephen's absolutely beautiful daughter, who will be 2 in December. Sydney was diagnosed with BA just a few weeks after she was born. Not much is known about BA, a rare and serious liver disease that affects newborns, and the only "cure" lies in a liver transplant. We hope you'll be able to join us on the 7th. For more information, visit http://www.ba5k.org/. Thanks!

Finally...

Imogene has a date with Dr. McClintock! Monday, September 28 at 11:20 a.m.
It pays to be annoying with the scheduler in a doctor's office.

lily's friend Tennyson was over when we took our 'month' photo shoot. Imogene got a lot of love! Her facial expressions are priceless.

Here she is! Eight months old.

Lily's first day of 3 year old preschool.

PT Thursday

Today is Thursday, so that means it is a PT day. Imogene was not happy when we got there. Her separation anxiety is peaking right now, and I think she was afraid she was being left. She snapped out of it though within a few minutes and we had a great time. She was fitted for a neoprene Benik hand support (click here for a picture) which will keep her hand from fisting as much, by holding the thumb out. Imogene will wear the Benik 50-75% of her day when she is not sleeping (which means she'll be wearing it a lot!) We had many colors to chose from; Imogene and I went with 'lilac.' Although, thinking about it now, orange would have been a nice choice for football season - I could have drawn little maroon VTs on it! Oh well, maybe next time! As with all things medical, the splint requires paperwork. I have a call into the pediatrician for a prescription for the Benik, and then the therapy center will order it for us once the script comes. So it will probably be two more weeks or so before she is sporting her new fall fashion accessory. Susan the PT did say she's made great progress and is already sitting up better than she was 3 weeks ago!
Lily loves Thursday too because she went to play her friend Lucy. Thank God for wonderful friends who treat your child like one of their own.

A few funny "Lily-isms" ...

It's not a unicorn, it's a "unihorn"

Gets up from a nap at the beach, opens the door and says "Surprise!"
Then immediately says, "I have to go potty before I go to the mall with Will and Wade." Will and Wade are our neighbors, and were not at the beach. She must have been dreaming about them!

Another time gets up from her nap and says, "Hey Mom, can I have flowers in my room?"
Me: "Your room at the beach?"
Lily: "No, my room in Virginia."

She is only 'allowed' to watch the DVD in the car when we are driving a long distance. She keeps asking me, "Are we still in Virginia?" (even if we've only been driving 5 minutes) She must know if we're not, then she should definitely hit me up for watching the DVD.

I gave her a kiss on the beach one day and she said "Happy Beach Day, Mom."

As we are leaving the grocery store, "Mom you are a great grocery storer."

Back Home, and Back in School

I'll start by updating you on Imogene. So many people have asked or called as to how she's doing. Again, you wonderful people you! We spoke with Gloria, Dr. McClintock's scheduler last week. At one point she said she'd need to speak to her manager and call us back, since he's so booked up. But when I told her we were out of town, she said call back Monday. Which of course I did, and left a message. I know they don't have appointments right now, but at this point I just want to know if the report is back, and get an idea of how long we're waiting. So that's all we can report on the MRI results, unfortunately.

We arrived home from the beach on Saturday afternoon, after hitting the road at 5:30 a.m. Imogene woke up that morning at 2 a.m. and then again at 4:45 a.m., so at that point we figured we might as well get the drive over with! The trip was wonderful for the opportunity to hang out with each other and our girls, and my family. Several times I kept reminding myself, "freeze this moment in your memory; remember exactly what that little girl's face looks like at this moment." There were so times when my heart practically burst for the joy Lily and Imogene were experiencing. Lily is a beach kid. She loves the sand and the water and all that comes with it. We searched for "sheshells" and made several sand castles, complete with moat. Lily insisted that the sandcastles have a slide, and a baby swing, and a big kid swing. We, of course, obliged. What a mom can come up with using some shells and some dried reeds! Lily also got to help Uncle Ryan fish, which involved Lily using her very own net to put the fish back into the ocean, and refusing to touch the baby shark that Ryan caught (not that I blame her). There was a kite-flying adventure as well. What a week she had!

Imogene loved putting her hands and feet in the sand! She would almost jump out of our arms when she heard the ocean and the waves crashing. Her 'excited' move is to rock and jump her little body while you are holding her. The legs go crazy! She also started vocalizing a lot while we were gone. perhaps it had something to do with all the talking going on around her, she just wanted to get a word in edge-wise! She makes this funny laughing sound, and is making a lot of 'vvv' sounds.

Both girls thoroughly enjoyed the pool at the house we rented. It had a hot tub, and it served as a baby pool for Lily. She practiced blowing bubbles in the water and stuck her whole face in! Who is this kid, I tell you! I hope to get her in some swim lessons before next summer to keep up her excitement and confidence about the water. Imogene was hysterical in the pool. She would absolutely go berserk with excitement while sitting in her float, and watching the water flow from the hot tub to the big pool. Watching her that happy made all of us laugh out loud, and what a welcome feeling that was! She really seemed more aware of her right arm in the pool. Wondering if she would benefit from some swim lessons as well!?!

Here is a link to pictures from our trip.
http://www.facebook.com/album.php?aid=109070&id=691297886&l=1de4f4aea6

Lily headed back to school yesterday. We couldn't be happier about this! Her teachers are Miss Frances and Miss Brandy and she has several friends from last year's class in her 3 year old room. Despite her grumpy attitude this morning, she is so happy at Westminster Weekday Preschool. And so are her mom and dad. It's the best place in the world we think! The preschool community, and the larger church community as well, really are becoming an extended family for us. What lucky people we are. I'll post pictures of the first day (aren't those just requisite pictures any parent takes?!) soon.

Happy Birthday Uncle Ryan!
We're having a wonderful time at the beach. Lily loves the ocean and the sand. She loves it more each year, which makes me so happy because I have such wonderful memories of beach trips as a child. And of course the pool in the backyard at the beach house is an added plus for Lily. She's having so much fun she's taking a nap right now, which she Never does anymore!
Imogene had a great first trip to the beach yesterday. She really liked the water and trying to eat the sand!
It's such a nice time to have our family with us...it's actually cool here in SC!

Thanks for checking in, and Happy Labor Day!

Today was a very draining day, but it really went so smoothly that we can hardly complain.

Imogene was such a trooper and mommy only got teary a couple of times. We arrived at 8:30 and of course nothing happened until 9:35. Once she was in her little orange gown and we'd heard the doctor explain all the terrible things that could, but wouldn't, go wrong due to the sedation, we all went back to the MRI suite. I held Imogene in my lap and the doctor placed the littlest oxgen mask you've ever seen over her mouth to help her go to sleep (they do this first and then do the IV, smart doctors that they are). She protested for about 10 seconds, and then fell asleep. (Typing this out gets me teary!) We laid her down on this massive table and headed back to the waiting room. Her IV was placed in her foot (after attempts at both hands failed), and then the scan took about 45 minutes. The nurse brought us back to her recovery 'bay' and we sat next to her while she slept for another 45 minutes.

Having the opportunity to watch her sleep like that got me teary again. She has never slept very well, and goodness knows we would never go in and watch her sleep, as much as we might want, for fear of waking her up! Of course most babies wake up in recovery, we were told, after about 30 minutes. But then Imogene never does what 'most babies' do. The nurse had to wake her up. Sweet baby just looked around at all of us, like "What's going on? Why am I awake?"

The nurses were all extremely sweet to her, perhaps because she was the only baby in the MRI suite! Children's National Medical Center is a massive hospital. Walking around I was a bit overwhelmed thinking of all those children that were sick or hurt and needed special care. What warriors they have in their parents and the doctors and nurses that care for them. But how sad that a building that big exists to take care of sick and hurt innocent children who've had no control over the lot they've drawn. I definitely felt lucky today, and that was an emotion I was not expecting going in.

So now we wait for the neurologist to receive the final report from the radiologist sometime next week. Since we'll be at the beach until the 12th, I'll start calling each day the week of the 14th to get us in to see him!

Thank you all so much for your prayers and good thoughts, again! It definitely helped us through today.

And now, we're off to the beach. What a much-needed vacation for all of us!

We just wanted to update everyone that the MRI is over and we're headed home. She did great and we're so happy that this part is over. We'll post more later. Thank you all for the prayers and well wishes.

Happy Birthday Naney!

We celebrated Lily's 1/2 birthday today. It seemed like a good time to give her a lot of attention and try and have some fun. The day started off with a playdate and muffins, complete with candle and a rendition of "Happy Half Birthday to You" with Will and Wade.

We ended the day with a trip to, where else, the Dairy Godmother, and the park with some friends. It was a fabulous way to get all our spirits up!

Bill and Imogene went to physical therapy this morning. Imogene was a little less than cooperative at 8 a.m. But PT Susan gave us some good homework for the next two weeks, since we'll miss next week while we are at the beach. She also called us with some great news this afternoon, a permanent appointment time! Thursdays at 11 a.m., starting September 17. Lily is in school Monday, Tuesday and Wednesday mornings from 9 a.m. to 12 p.m. Friday mornings will have to be our 'play-day.' We're so happy that we're on Susan's schedule. She seems very committed to her job and the children, and their parents, that she serves.

Can I just comment on something totally unrelated to my children? Michelle Duggar, the mother of 18 and one on the way in Arkansas. There is No, and I mean NO, way that a single one of those children ever cried for two and three hours at a time as a baby or there is No, and I mean NO, way that there would be 18, almost 19 of those kids. I hope they realize how lucky they are to have been blessed with that many sleeping, healthy children! Wowsers.

And one more thing...Only 3 more days until our favorite time of the year without a doubt, the Hokies kick off the football season!!!! There is nothing better than cool weather and football on tv all day. Good Luck to all my Gamecock friends Thursday night. What a dedicated bunch y'all are.

Its a NEW Date

Imogene will have her MRI at 10 am on Friday, a whole month earlier than we'd thought. So happy that I asked to be on the cancellation list! It will be a relief to have that wait over with, and not go through the entire months of September and October waiting, worrying and wondering (I am a worrier, it's just my nature. Hard as I try, I cannot keep from worrying!) Now if we can get in with the neurologist once the report comes back, we could know the full diagnosis and prognosis before the end of the month. Of course we're leaving for the beach first thing Saturday morning, so it makes the week a little crazy, but so worth it.

Lily will be spending Friday with Erin Campbell (thank you dear friend!). While Lily's so excited about her big girl day with HER ;) friend, she was really sad about not going to "help Imogene" at her appointment. Not that we would even be able to explain to Lily what happens during an MRI, and not that we would have ever taken her with us to the MRI, even if siblings were not allowed! If you know Lily at all, you can imagine the one million questions she'd ask! I do hope she'll be able to go with me to PT one day so she can feel a part of Imogene's "exercises." The Sigler Family is sporting new "Life without Limits" bracelets, which support United Cerebral Palsy. Lily will tell you that she's wearing it because "it helps Imogene's right arm."

Happy (early) Birthday to my mom, also know as Naney/Nane. Her birthday is Wednesday and we're looking forward to a belated celebration for her and Uncle Ryan, whose birthday is Monday, this weekend at the beach! It's also Lily's 1/2 birthday on Wednesday! Lily and I have a date to make muffins in the morning while Bill takes Imogene to her 8 am physical therapy appointment.