finding balance when illness happens

i love my kids. i really, really, deep down in my soul, do-anything-for-them, love my kids. that said, there are moments where i don't know how to do that best or show it equally and that's something that i'm finding so hard.

i think it's more difficult when you have a kid with special needs and i'm still trying to get used to thinking about Caleb in that way. i always find myself trying to minimize and downplay his struggles, not that they are huge struggles but that almost if i accept them it makes his diagnosis more real. i still have difficulty accepting that he's on the spectrum and that he's going to struggle with things and i still forget that struggles aren't always bad for us.

anyways...

Caleb and Sadie each demand a lot of attention and for very different reasons. Caleb struggles with social situations and managing his tantrums and outbursts. Each week he spends 8 hours with his TSS and a couple of hours with his BSC and now we're adding occupational therapy to the mix. all of these things help him a great deal but it's a lot of attention that i think he would prefer not to have. on the other hand, Sadie will not be ignored. she almost seems to crave attention, at least most of the time and when big brother seems to be getting a lot of attention, it can be very difficult for a little girl.

a few weeks ago (Saturday), Sadie came down with a fever. not super high but significant enough to slow her down. we didn't see anything else wrong with her and so we administered ibuprofen and figured it would clear up in a day or two. Monday came and the fever was still there and still making her uncomfortable. we'd give her medicine in the morning, about lunch she would perk up for a bit and then by the afternoon she would be miserable. Tuesday morning was originally supposed to be her 4 yr checkup but instead became a sick visit when they saw the fever. the doctor looked her over and i still thought we were going to be sent home, convinced that she had the flu and kicking myself for not getting her the vaccine weeks ago at her brother's appointment. our doctor instead had a very serious tone and said that he wanted tests done. he mentioned mono, TB and the need for a chest x-ray and then the possibility of this Kawasaki syndrome, a very serious concern that would require a stay in the hospital. he pointed out Sadie's swollen lymph node on her neck- "her hurt neck" that i thought was code for a sore throat. then it was off to Children's for her tests.

for the rest of the week, Sadie became my focus. trying to take care of her fever, keep an eye out for other symptoms and generally be there for her. at the same time, trying to keep things as normal as possible for Caleb. Wednesday afternoon was the most difficult and the most conflicting moment for me. i noticed a red rash on the back of Sadie's shoulder and after reading up on the symptoms of Kawasaki (thank you webMD), knew that i needed to call the doctor. i filled him in on the change in her condition and he promised to call back with directions for us. Caleb was working with his TSS, a usual Wednesday afternoon but at the same time a lighter schedule then usual. at 3:15 the doctor's office called asking us to be there for 3:45. from the new house it takes us a good 20-30 min to get into Shadyside but i said we'd be there. i went upstairs and told Caleb we needed to go to the doctor's office for Sadie. he immediately said no and then the struggle began.

my little guy had no understanding of Sadie's need to get to the doctor's not because he didn't care but simply because he was focused on this unexpected change in his day. when he gets hit with these changes, sometimes he just says no and that's when i don't always know what to do. thankfully, i had his TSS there. she worked with him, talking to him, explaining to him, and coaxing him when i just didn't have the time or the patience to. i went back downstairs and gathered up Sadie. i took her down to the garage. Caleb still was refusing to come. i put her in the car and felt so bad leaving her sick and miserable even for the few moments it would take to go back upstairs to get her brother. again, thankfully, Caleb continued to refuse to go but he didn't tantrum. he's had trouble lately with tantrums and has had a few recently that lasted a good 20 minutes- time i didn't have in this instant. he let me carry him to the car, no shoes and no jacket. he also let me put him in and buckle him up. this would not have happened if he had been mid-tantrum. have you ever tried to buckle a 5 yr old in a seatbelt? it doesn't work well. i was so thankful that it went as smoothly as it did.

however, it still frustrated me that at this moment when i really needed to focus just on Sadie, i couldn't. i don't know, maybe i'm naive to think that parenting can be balanced that easily, maybe it's always going to be a give and take with my two. it did make me worry that Sadie might feel that she never gets the spotlight completely- that maybe she will continue to "demand" our attention to balance out all that we need to give her brother. it's a very frustrating situation to be in.

we made it to the doctor's relatively on time. her doctor was pretty confident that it was Kawasaki and got in contact with Children's. then he sent us home to wait one more day. Thursday morning we got the go ahead to take her to the hospital and get her admitted. fortunately, Caleb's preschool is fairly close to the hospital so he got to go to preschool, and we got to get Sadie set up in the hospital.

she was very brave getting an IV and numerous temp and blood pressure checks. they did an echo-cardiogram and finally started her treatment, an immuno-globulin drip. she bounced back pretty quick and enjoyed getting to watch a bunch of movies and cartoons, not to mention all the get well presents that appeared.

Friday afternoon, Caleb came to visit and he was able to see that Sadie was okay and that the hospital wasn't as scary as he thought it would be. they even spent a couple hours playing in the playroom together.

after a day of observation, Sadie was released to go home and we were all thankful to have her back.

she's expected to make a complete recovery. she has a follow-up echo-cardiogram in January and until then, she's enjoying a baby aspirin a day to prevent clotting and keep her heart in good shape in case there was any damage to it. we're so thankful that everything went so well.

and now things are back to normal... or as normal as they get here :-)

At the Doctor's again and again and again

once again, it appears that our house has contracted some kind of disease. this all started two weeks ago, at the end of G'ma J from NJ's visit. Caleb developed a fever, 102 fever and it freaked me out a little bit. i'm just not used to my kids being sick like that. for them, a high fever is 101 and that is pretty rare. there didn't seem to be other symptoms and the fever wouldn't go down even with tylenol. and of course, this all happened after the dr's office closed. we made some calls later that night and the nurse recommended we get him seen on Sat. so we did. the verdict was a cold and we started seeing the coughing and runny nose hit.

a few days later, Sadie started with the fever and the coughing. her coughing was so bad one night that we didn't get any sleep. i thought i would call the dr's and ask if she was old enough for a little bit of cough medicine. they told me to bring her in. so back to the dr's we went and again they said it's just a cold. (that was last thursday)

Caleb's cold seemed to be getting better. we didn't really have any fever and he was sleeping through the night. then yesterday...

we were playing outside in the sun and i happened to notice that Caleb was shivering. it was almost lunch time so i brought him in and checked his temp. 102. i couldn't believe it. so i gave him some motrin and put them both down for a nap. at 1:30 he woke up fussy, and i discovered that he had gotten sick in his bed. his eyes were open but he was limp and not really responding to me. this scared me. i checked his temp and he was up to 103 (this was just an hour or so after getting the dose of medicine). i was scared. i called andy and then called the dr's. they wanted to see him but couldn't get to him until 3. so we sat and watched Cars- him simultaneously shivering and burning up to the touch. we got to the dr's and the poor thing fell asleep on the floor of the waiting area while waiting to be called back. then when we were shown into a room, he fell asleep again waiting for the dr to come in. i think after the 2 little naps the fever medicine started to kick in and actually bring down the fever a bit.

he perked up a little for the doctor and once again, we were told it was a cold.

last night we brought him home and he slept for a good 3 hours. he was very pleasant when he got up but soon the fever was back. it was a long night with not a lot of sleeping. andy and i took turns sitting with him but he didn't really sleep much. then this morning the fever was up again, this time to 104. fortunately, we were already scheduled to be at the dr's for Sadie's 18 mos checkup. so Caleb got checked out as well. part of me wonders if there's some kind of spell or something on the dr's office, that as soon as a sick child steps into the waiting area, their symptoms begin to fade and are almost completely gone by the time they are actually seen by the dr. then of course, the parent is left looking like a paranoid hypochondriac. that is what i felt a little like today. i was actually happy when they took his temp and saw it was 103 (yesterday the highest they got was 99).

well, as both kids were checked, we learned that Sadie actually has another nasty ear infection and over night Caleb seems to have developed one as well. they still feel that the fever was caused by the cold.

so we're home now and with new medicine. Caleb was much more cheerful this afternoon and has taken a really good nap.

we have follow-up appts in 3 weeks- hopefully we won't have to be back before then.

What A Trip!

Well, we did it! Caleb, Sadie and i made our first trip across the state to visit the NJ grandparents without Andy. it almost went really well :-) many have questioned my sanity and asked "why would you do this?" and i really didn't think it would be that difficult. in all honesty, the actual car ride out wasn't difficult at all- a little hectic keeping one eye on Caleb while chasing after Sadie crawling away at the Wendy's in Breezewood -but we were able to eat and then had a nice visit with the Groshes so the trip really wasn't bad.

the fun began saturday night....

Sadie ate too much (or that's what we originally thought) and got sick twice in about an hour so she had to sleep with me for the night. she was thoughtful in getting sick at about 11 pm when we were all just going to bed, instead of doing it in the middle of the night. then Caleb got sick in the morning. we kept them home from church but still thought they had just eaten too much- we were trying to be positive. then Caleb got sick after dinner and the fever started and we realized, they had picked up some kind of stomach bug. monday and tuesday were spent cleaning up messes, nursing fevers, making trips to CVS and figuring out if we needed to see a doctor. (these kids never get sick like this) by wednesday, Caleb and Sadie were much better but i came down with it and i had been planning on driving home on thursday. that was not going to happen. wednesday evening, Andy called and the wonderful husband he is, bought a bus ticket and rode out overnight to drive us all home thursday. (oh and g'ma came down with it wednesday night and was sick all thursday).

it was not the trip i had planned and i still feel so bad. i had intended to go out because at the last minute, Andy's mom was not able to come out here to visit for her break. this meant that she probably wouldn't see the monkeys until April. i had hoped to give her a nice visit and help out but it didn't quite turn out that way. oh well. it's made quite the story...