Summer Fun

In case I don't get to blog tomorrow,
HAPPY BIRTHDAY JENNY BURLINGTON MARKHAM!

You're probably going through what we've been through this week.

H-O-T HOT HOT HOT.  

Will turned four on Monday, so we celebrated his big day at the park with a baseball party. Lily was very dedicated to the baseball game, and didn't even go to the playground when the other girls did. She stuck with the game the entire time!

Our neighbor makes amazing cakes - this was a baseball field, complete with stands made out of rice krispie treats. The infield was crushed graham crackers, which amazed Lily. There was a big "W" like the Nationals logo, but not for Washington, but WILL!

Taking a whack at the pinata.

How cute is Lily's "brother" Will?

Camp ended this week, sadly for Mommy and Lily. One day this week they did face painting - one of Lily's most favorite things to do! 

Apparently this panda bear face was her FIFTH painting of the day! 

Go to Sleep!

The other night as the girls were finishing their dinner Bill came home and pretended to sleep on the table. Lily started to play along and then he would wake up all startled, Imogene finds this hysterical. So she starts laying her head to one side and then hopping up giggling. She's doing this all the time now. She will lay cradled in our arms and laugh and wait for us to say "wake up!"

This is the girls pretending to be asleep.

Daddy pretending to sleep. Poor guy probably wished he was really asleep!

Lily and Imogene pretending again. Imogene wouldn't shut her eyes...

So Lily helped her out. You can see how Imogene felt about this based on the expression in her mouth!

Then Lily needed me to take her picture, while she was dancing. I have to say, she's got a decent bit of rhythm and is always 'changing up' her moves!

Quick Update

To start with, if you live in our area, you probably heard Bill and I and our friend Adam screaming outside when the US finally scored to advance into the next round of the World Cup. It was such a stressful game, and until the moment the ball finally went into the net, I was pretty sure we were done for. Wow! Don't call us on Saturday 2:30 pm - we'll be glued to the TV!

Imogene has a case of viral strep. Poor thing - Dr. Baldrate could see 8 or 9 little sores on the back of her throat. She slept this morning for a while, after not sleeping much last night. Hoping she'll be feeling better by the end of the week. I know, now, why she was grabbing at her tongue these last few days like she had a hair in her mouth or something. Her throat really hurts!

Imogene's Turn

Just when we had Lily back to a pretty happy girl most of the day, Imogene goes and gets a fever of 103. She was just miserable this afternoon and so lethargic. She slept in my lap or cried into my shoulder most of the afternoon. Thanks to the Jones family for having Lily over and feeding her supper. (Again!) Imogene's culture from Friday came back negative (although I question the accuracy of this test, since I'm the one that pulled the sample from the diaper and put it in the test tube, but anyway.)  But the nurse at Dr. Baldrate's didn't like the sound of the fever after so many days of a messy tummy. So we're going to see Dr. Baldrate first thing tomorrow morning. That will make four visits in the past five weeks. We're on a roll. She woke up tonight after about an hour of sleep. She slept in Mommy's arms for about 20 minutes, and is back asleep in the bed. I could just feel that her fever was still high by touching her.
Unrelated, but sort of not. This train of though went through my head today. I saw a girl and her mom on a walk. The girl was about 11, and clearly had CP and possibly Downs Syndrome. Her CP was much more serious than Imogene's. Immediately I thank God that we're not dealing with more than we are (which makes me feel slightly guilty, because that's really not fair to her family, but what can you do about how you feel?) Then I think about what we'd do if Imogene had another stroke or developed seizures. For that matter, what if something happens to Lily? What if Lily had a stroke? Sometimes I forget (on purpose) that Lily is not immune to anything. I really sometimes think she's like Teflon and nothing will go wrong with her, because it's already gone wrong with Imogene and isn't that just enough for one family? And then I think, goodness gracious being a parent is just too much on your heart sometimes. How does anyone with children take a deep breath every day? What an awesome responsibilty and love it is to be a parent, and to be so madly, bonkers in love with these little people that you'd rip yourself in pieces to make them happy, healthy and safe. How do any of us survive loving that much? What crazy trip are we on I ask you????

Happy Father's Day!

We're having a lovely day. Save for the part where Lily woke up at 530 am coughing, and finally went back to sleep at 630 am, and then refused to say sorry for something she did this morning for about an hour, the day has been very nice. We spent this morning swimming and ate lunch at the pool. This evening we're going "for a big night out" as Lily says - dinner is a big night out on a Sunday.
This has been a long week - how many times have I said that? Lily just wasn't herself, and had a tough time getting geared up to go to "Camp" at school. She perked up by Thursday and Friday. I'm not sure she shed a single tear from sadness during the entire year at school, but cried enough Tuesday at camp that the school called me to see if I thought her rash was still bothering her. Oh, Lily. She and Bill had a great time at a poolside birthday party yesterday. And we all enjoyed "Saturday in the Park" with church friends yesterday morning, and a nice dinner with our friends John, Jessica and their two girls last night. All around nice, uneventful weekend. Did I mention we've watched a LOT of soccer? Don't get us started on the "phantom goal" - we just want the US to win this week and control the group!
Imogene hasn't had the best week either. She's had a mess of a week with her stomach so I took her to the pediatrician Friday afternoon. I'll spare you the details, but I provided them a sample from Imogene's diaper, and they'll check it to make sure it's not more than just a virus. She also had speech therapy Friday afternoon. DeeDee watched her eat a little bit, and then we worked on some words and signs. She thought Imogene might be pushing food to the left side of her mouth (she put a straw in the front of her mouth, and she bit it, and moved it immediately to the left.) Pt went pretty well Thursday. At one point she was wearing her Theratogs, a "walking-wing," electronic stimulation on her leg, and her splint. It was quite a sight. She is dragging her right foot a little at the ankle, so we'll watch it and try to get her to step up as much as we can - this helps her with the dorsiflexion of her ankle.
Lily has camp again this week at school. Hopefully she'll be in better spirits!

Argh

Imogene is 17 months old today!

This just hasn't been our best week. Lily is just not herself. Screaming about things that usually wouldn't bother her.And I mean screaming and crying and kicking and hitting and just not pleasant. It's getting really bad. I had to physically remove her from a friends' house today and we had to take reading at bedtime away, which we hate doing, and she hates losing. I've been researching how long prednisone stays in your system. Please let it be the prednisone and not some terrible new behavioural trait. She's just nutty. I am also sure she's testing me, to see how far I'll let her go. I know it's her age, but she just isn't usually like this to this degree, so we're really, really hoping it's the steroids.
Imogene is so, so, so clingy. If she wants me to hold her, she will stop at nothing, including clawing my legs, until I pick her up. She will not let me leave the room for more than 2 seconds. Let's just say I'm getting virtually nothing done these days. She had a pretty good OT session today. We started the electronic stimulation on her arm. Imogene did not like this very much, but tolerated it. Apparently we're going to do her foot as well, and will most likely need our own machine at home. She's also started dragging her right foot when she is cruising or walking while holding your hands. PT Susan said a brace is possible, but we'll tackle that once we see what she's really doing, since she said Imogene hasn't developed any hard and fast walking patterns at this point. Susan then encouraged me to take deep breaths and take each day as it comes, which I'm trying hard to do!
We have had some good trips to the pool this week. Lily and Imogene both absolutely love the water. Although Imogene gets pretty angry that we won't let her go and walk around in the big pool, she is really at ease in the water. Lily is getting more comfortable in the water each day, and would rather be in the big pool than the baby pool. I'm working on setting up lessons for her. My favorite summer memories as a child are of the pool and swim team and the beach, so it makes me really happy they like the water. I can't help but think of swim team whenever we get a late afternoon thunderstorm, especially on Thursday nights, which was meet night for the Wildewood Swim Team!

Dance Recital

Happy Birthday to my dear friend Nancy Koglin Vosburgh!

Lily's recital for her ballet class was yesterday afternoon. I really had bad luck with the camera lighting. My pictures are not good.  But she did a really good job and seemed to have a great time. It was REALLY long, and they sat in rooms and played between their performances. That alone is impressive - they were "backstage" for over 3 hours. God bless the moms who stayed in the rooms with them! Thanks to Naney, Grunny, Charlie, Erin and the Jones family for coming to support our little dancer! She must have asked 100 times - "Did I do awesome?"

Impossible to tell, but she's on the far left. This was their "Indian" dance.

After the recital with her friends Sarah and Lucy. I made them the little bouquets and they were too busy admiring them to all look at us at the same time. (A little aside...outside when we were leaving this little girl from Lily's class was sobbing her eyes out because she wanted flowers like everybody else. "Where are my flowers?" she kept saying. Gut-wrenching. My heart ached for her and her parents!)

Our beautiful ballerina. 

Naney gave her a charm bracelet after the recital. I love the look on her face!

This afternoon she tried on all her costumes again. This is the "woodland creature" outfit. (She was also a dog - from 101 Dalmatians. It was a Disney Theme. Did I tell you it lasted forever?)

Here you can see the face painting she received at the church picnic today. She got two on her face, one on her arm and one on her hand, plus two tattoos. Lily loves face painting, but she also loved spending that time with Maggie and the other "big" girls at church! On her face are a baseball and a flower. I really think Lily is a good mix of sporty and girly-girl - and her face is a good example! 

Naney got her an "I love sports" charm and a dance charm - perfect!

Cup Runneth Over

Today I was totally and completely overwhelmed by the very generous and gracious gift from a group of dear friends. What they did (although ridiculously fabulous and such treats for me!) isn't really as important as how wonderful it made me feel. So much so that I've cried every time I've tried to talk about it today. It absolutely knocked me over with love and gratitude to feel that great big "hug." So to Melissa, Delaine, Tracie, Alexis, Tess, Meredith, Laura, Megan, and Perrin, I say thank you, thank you, thank you. You are tremendously amazing mothers and friends.

Lily is much better. Save for a lot of tiny little 'scars/scabs' you'd never know she'd been so banged up this week. But boy, let me tell you I am excited that there is no more prednisone to take. She has been a nutcase  these last few days, and I really hope it's from the medicine, and not some new personality trait! This morning we went to the ENT for a follow-up on the fluid in her ears/hearing loss. The fluid is way down, and her hearing is back to "acceptable range." However, there is a possibility that the prednisone got rid of the fluid, and it could come back. So we'll go back in September to re-check everything. But good news that she doesn't need tubes this summer!
I also talked to Dr. Baldrate, and she is thinking the cause was viral. But since there is a chance she ate crabmeat on Sunday, we're going to test her in July for shellfish allergy. It will be such a bummer if she is allergic to it, since Bill & I love that type of food. That is, if in her lifetime she'll ever eat anything besides pasta, cheese or PB&J. We also now have an Epipen, should she have another break-out. So now we just hope that rash won't come back after the prednisone wears off.

Her ballet recital is tomorrow afternoon. Today at rehearsal she got a little upset. (A friend was a room mom and had me come get her a little early.) Apparently when they are the "101 Dalmatians" Cruella yells at them or something, which Lily was not prepared for at all. She was terrified. Hopefully tomorrow she'll be okay with it since she knows what's coming!

On the Mend

Lily is doing much better. She got her full 12 hours of sleep (what a life!) last night and despite a little 'prednisone-rage' about not watching a video in the car, she's had a great day. I'll be glad to be done with the prednisone tomorrow. Still waiting to talk to Dr. Baldrate about what on earth brought this on!

She asked me today to help her watch her doll Emily while she "got her food together." She said, "Mom, you can keep one eye on Imogene, and the other eye on Emily. That's what I do at school. I keep one eye on my art, and the other eye on my friends." I am not sure if she has heard us talking about what Miss Frances said about her not being able to focus during projects...but that's just crazy that she said that! 

For you Glee fans, here are Lily's observations from the season finale. (Of which I loved the music, but not sure how I feel about the way it ended.)

*While I'm fast-forwarding the beginning, "Why is Quinn laying down? Is she okay?" I think she's just hanging out Lily. "No Mom, that's not what she's doing. That's not hanging out."
*"Why is Artie's hair all different?" They did their hair nice for the big show, Lily. "Oh, well doesn't Finn's hair just look great?"
*"Don't you think Quinn's hair is just beautiful?"
*When I fast-forwarded the Vocal Adrenaline / Quinn's birth scene "Why can't I watch that part? They are singing Mom. You said I could watch the singing." Lily, that part is too grown-up. "It's okay mom, I'm okay to watch it even if it's silly grown-up."

We went up to Frederick on Sunday so that I could go to a baby shower, and Bill & the girls could have lunch with Grandpa Roy & Carol. On the way home Lily was watching a movie, and Imogene slept for about 20 minutes. About 20 minutes AFTER she woke up, Lily says "Hey guys, Imogene woke up from her nap."

At the end of the year at WWP, the teachers give out a letter with a little something written about each child. Lily's was "Lily is our high octane listener with a very accurate success rate." Basically I think she was saying "if you don't want to world to know, don't say it anywhere near Lily."

Last Day of School Party

Her last day as a "3 day 3!"

Imogene and Miss Patty had a great time together! 

These are just funny. I have about 5 more I could post - she was too funny in this little couch.

Special thanks to our friend Megan Pollock for making IBS this too cute shirt!

I think Imogene will be this happy the day she finally gets to stay at WWP!

Lily and her sweet pal Macey.

With Miss Frances and Miss Brandy.

This is the little brother of twins Lily has been in school with for the past two years. He is exactly 2 weeks older than Imogene. They were flirting! 

Rainy Wednesday Afternoon

Lily made it to school today. Her toes were itching like crazy, so she wore socks for the first time in what seems like forever. That did help, thank goodness. She seemed full of energy and her old self at school. I was so happy she didn't miss her end-of-the-year party. Her face is starting to get covered in rash again, however, so I look forward to touching base with Dr. Baldrate today or tomorrow. We went to Chick-Fil-A with our friends Alexis Susan and Claire for a little last day celebration. Lily was good, but at the end I knew I'd asked too much of her. She was completely losing it about everything on the way out of the mall. (If you're out there CFA executives, please please put a stand alone store somewhere near me. I promise to single-handedly keep it in business.)
Imogene had OT today. Of course I forgot her bathing suit because I forgot to put the new one in the therapy bag. (The old one was so small it was leaving strap marks!) So it was a low-key session, which was nice. It's been a long week. We took measurements for the SPIO, tried "brushing" her right hand to see if we could wake it up a little bit, and then just did some playing to try and get her to use both hands/arms. She did a good job of stacking some larger blocks up and eventually figured out it was easier to at least attempt to help with the right arm. We also talked about ways (possibly a new splint) to try and get her to open her hand more. Right now when she does any kind of weight bearing she's completely fisted. The more she fists, the tighter her muscles get, and the tighter her muscles become, the harder it is to get them to loosen up, and the more likely some medical intervention like Botox would be necessary. We're certainly not at that point yet, but we want to stay ahead of it as much as possible.
I'd like to thank Mother Nature for getting on a rain schedule that is always just a day ahead of when I absolutely have to water the yard.

Update

At 4:00 pm this afternoon I would have told you Lily was not getting any better. Her face was covered again. Dr. Baldrate called around 5:30 pm and we talked about how this might actually be an allergic reaction. She said today that she consulted with the doctor who saw Lily last summer for the seemingly same thing (it was a Saturday, Dr. B was not on call.) They both think that since this rash has appeared and then gone away in places and then reappeared, that it's very close on the line between allergy and viral. So she'll check back with us tomorrow afternoon, and we decided that by Thursday a.m. if she's not better, she'll consult an allergist. So at 7:00 pm when Bill got home he was amazed at how much better Lily was - me too! But by 7:45 p.m. she was starting to get splotches all over her face again, so who really knows what's going on. She went right to sleep tonight. We've been reading one chapter of Charlotte's Web each night. She fell asleep about 2 pages in. When I stopped she kind of stirred and said "I'm just resting my eyes." And then promptly fell fast asleep. Poor kid.

Our sweet, sweet friend Sydney Moss is in the hospital in Atlanta, with a possible infection called cholangitis. Please keep her and Lindsay & Stephen in your thoughts and prayers.

Speech Starts

We started speech therapy today. Our therapist, Diedre (she says people just call her DeeDee), came to the house (I love that about services through the city!). Imogene really warmed to her, and while she certainly wouldn't let me move out of arm's reach, she interacted well. DeeDee gave us some 'homework' and some ideas of things to do with Imogene - like holding an object next to your mouth when you're talking to her about it. Imogene tried very hard to say "up" and came pretty close. We see her again a week from Friday, the 18th of June. Maybe it's because I'm tired from being up so much with Lily, but speech left me frustrated. I'm not 'complaining' - I know that things could be much worse, and that Imogene is doing so well, but sometimes I just want to play with her. I don't want to hold the toy up to my mouth and super-enunciate. I don't want to constantly watch the position of her arms and feet, and figure out ways to work therapy into her daily activities. Right now we're supposed to be working on ways to get her to build trunk muscles. One suggestion is to hold her on an exercise ball and engage her in a manner that keeps her from being able to lean on anything while playing with a toy. Let me tell you how easily that fits into our daily routine, and how easy it is to do by myself. I just want to play, I just want her to play, I just want her to get to play the way she wants to play. Okay, enough of that.
Lily seems to feel better, but her skin doesn't look much better. And she's still nutty from the itching. She's watched TV almost the entire time since she's been up, but I think it helps her forget that she's itching. We went for a long walk, and that helped a little bit too, but there's only so long I can walk! Really hoping she'll make it to the party tomorrow, but I'm not so sure!
Someone out there made an anonymous donation at Mother's Day to CHASA on Imogene's First Giving site (www.firstgiving.com/imogenesigler). Whoever you are, we thank you from the bottom of our hearts!

Happy Birthday to Miss Pam!!!!! We're sorry we won't be at school today to wish you well in person!

Lily had a terrible night's sleep. I'm not sure she got more than 2 straight hours. She is asleep right now, which is something. She is itching so badly, but no where worse than her feet. We wrapped them in washclothes, ice packs, socks. Nothing worked. And a four-year-od just does not understand that scratching only makes things worse, despite the immediate gratification! Hoping another dose of prednisone is going to help!

Happy Times

Okay so I felt the need to post some happy pictures after those terribly sad ones of Lily!

Imogene will actually sit in a chair for a little bit now without immediately climbing out. They were so cute sitting there together in their "morning-ness."

 Imogene looked just as cute as her sister did almost exactly 3 years to the day 

after she wore this same outfit!

Lily coming out of the bounce-house Saturday afternoon. Two of the families from her class had all the 3 year-old families over for an end of the year party (as of Wednesday they'll be the 4 year old classes! Yikes!) Such a nice time, even if it was 1,000 degrees! Lily had an absolute blast - especially in the bounce house. Not sure if it's clear here, but she was REALLY hot! 

Pictures to Prove It

Poor Lily. She is really taking a beating by this rash. The prednisone certainly improved her spirits and her appetite, but it didn't help the itching, and neither did the Benadryl. She just went to sleep a little bit ago (it's after 10 here), because she just couldn't stop scratching! I'm hoping she'll get some sleep tonight - Mommy & Daddy too! So here are some pictures. Hope no one thinks I'm terrible for posting them. But I just couldn't help but want this recorded - mostly for medical purposes, because if it happens again I want to be able to show someone how bad it gets. Poor thing cannot be expected to go through this every time she gets a bad virus!

This was around 7:30. By 9:30 she really did look better. 

It makes me want to cry to see her this miserable. She's being a great trooper though. I'm really impressed by how grown-up she's been. Lily didn't even get tears in her eyes when they did her finger prick today.

Earlier this afternoon.

Arms and legs this evening before bedtime. So hoping tomorrow is a better day for her. 

Double Naps

It's super rare that both Lily and Imogene are sleeping during the day at the same time. Try never. It hasn't happened in oh, 14 months. But it's happening right now. Sadly, Lily is asleep because she's pretty sick, that or the Benadryl the pediatrician gave her has knocked her out. When she went to bed last night, she had a few large welts around her waistline. I thought maybe a flare-up of ezcema. She woke us up at 4 am (this was after we'd both dealt with Imogene for a while until 230) and I could feel how warm she was, and how warm her skin was. By 7:20 am, she was covered in hives all over her body, and by the time we left Dr. Baldrate's office at 12:15, it had spread into her hair, ears and face. Poor thing looked at me after she had blood drawn and said "I feel horrible." She fell asleep in the car and is still sleeping almost 2 hours later. Dr. Baldrate said this is probably just how she reacts to viruses, and a few days on steriods should help a lot. We're hoping she's doing better by Wednesday at 11:15, so she can attend her 'last day of school' party. This same thing happened last summer, and when they drew blood her platelet count was really low, so we had to go back and re-check her platelets. At the re-check appointment I mentioned to Dr. Baldate about Imogene's arm, and well you know the rest. It's sort of weird to be going through this again! I don't remember her feeling this badly then, but, as I told Dr. Baldrate, I only remember the platelet count concern, and what it meant for Imogene's future. ANYWAY ... that's where we are on that.

I walked in the Race for the Cure on Saturday with some Delaine (our neighbor - Will & Wade's mom) and some other friends. There were an estimated 50,000 people there. It was so moving and overwhelming and emotional and inspiring and sad and fun all at the same time. I was especially moved (to tears) by the women in the pink "survivor" shirts who looked my age or even younger. One of the best - and inspiring - posters had a picture of a baby and the words "Find a cure before I grow boobs." Participating in the Race also gave me a very clear picture that every walk of life - age, race and creed - is hit by breast cancer. Such a sad fact, and such a reminder of how many people battle so many different diseases each day.

Newsworthy

I didn't even know anyone read this small local paper we get, the Alexandria Gazette. But apparently they do because three people told me to check out the following: http://files.connectionnewspapers.com/PDF/current/Alexandria.pdf - check out page 3!

PT Thursday

Imogene did not get into her diving suit at PT today. However, the plan is to wear the Theratogs when she is at PT and then at home she'll wear what's called a "Spio." "Stabilizing Pressure Input Orthosis (SPIO™) assists patients with stability and proprioceptive deficits through deep pressure. Since deep pressure appears to be an important somatic input for balance and movement control, SPIO is designed to provide and enhance deep pressure sensory input around and toward the midline of the body to improve dynamic stability and postural activation." We're supposed to put this on every other time we changer her diaper every day. It looks really hot, and does not look like it will match her cute little summer clothes one bit at all, but we'll make it work. To be very honest I'm not looking forward to this thing at all. I really hope it works its magic quickly. It looks like something she's going to be bothered by all day. It has to be ordered, and she has to be measured, so we might not have it for a few weeks. For those of you keeping up with us, we haven't tried the electronic stimulation for her arm yet. Hopefully next week they'll have all the pads/wires they need.
We received her "progress note" for PT today. (She won't get an OT note for another month or so.) Imogene is meeting or coming close to many of the goals that were set last August. When Susan starting writing the report a few weeks ago, Imogene couldn't sit down when she had pulled up to standing. She would pull herself up, and then get stuck. Now she can get down by bending one leg and sitting down. Great progress!

From the files...

Tonight Lily absolutely clocked her head on the corner of her dresser. She cried and cried, rightfully so. When I said something like, "okay sweetie, let's try and relax, take a deep breath," her response was, "And then I can start crying again?"
Yesterday we went over to Lucy's and played in the plastic baby pool and water table. Lily and Lucy were laying down with their heads on the side like pillows. Lily to Lucy, "Hey Luce, isn't it nice on a hot, hot day to lay and rest in a nice cool pool?"

Imogene is ridiculously cranky lately. She is so opinionated and fiesty and gets so, so angry when things don't go her way. If she doesn't want to get into the car seat she goes straight like a board and slams her left arm around and just screams and cries. If you take something away or won't give her something (for example, the keys while you are driving), she just goes bananas. She has even started laying down on the floor in a completely dramatic fashion. That part of her behavior lately is pretty funny. OT Amy and I were discussing this today (IBS was less than fun at OT), and we talked about how it's her age, but also her frustration with her inability to move the way she wants, and she can't express her wants with words. But she's determined and very strong-willed, so that's a good thing. Her performance today was not helped by her sleep last night. It took us until 11:15 PM to get her to go to sleep last night. She would not go to sleep for anything. Poor Bill, she loves him to pieces but was so clingy to me that she sobbed into hyperventilation when he would try and put her down. He battled her again tonight, but so far it has gone better than last night.