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.