Saturday, January 31, 2009

sent home from school

so like the title says, akaiya was sent home from school yesterday. she vomited a bunch of mucous up and they said green stuff was coming out of her nose. papa, being the amazing guy he is, got the call and went to pick her up. he even got the wheelchair home in a regular sized car! yay papa! by the time i got home kaiya was playing on her mat, bouncing around, and giggling...she does sound stuffy though. good thing it's a weekend and she can sleep in and get some rest.

Friday, January 30, 2009

another angel

we are asking for more warm thoughts to be sent out to another family. the warnemuende family lost their beautiful daughter keren this week.

Thursday, January 29, 2009


akaiya and i are asking you to keep a fellow illinois family, the sibthorps, in your thoughts. their daughter rowan passed away saturday january 24. rowan had the sweetest smile and the most beautiful blue eyes. she really was a sweet little girl. we will miss her very much.

Saturday, January 24, 2009

little bundle of sunshine

kaiya has definitely been back to her happy self for awhile now. it's always wonderful for me to hear her giggles and see her smiles because we were told when she was born that we wouldn't have that.

i was talking to someone today about the problems they are having with one of their pre-teen children. this child has had a difficult life and has a lot of anger. while i was talking and trying to come up with some helpful solutions i couldn't help but look down at akaiya playing with her toys on the mat. i am so lucky because she is just full of so much joy. sometimes we get so caught up in the daily rush of needs, wants, and must haves that i feel like we forget to just sit and be happy. every day kaiya wakes up with a smile. she will roll, pull, and push herself around on the floor playing with her toys and just giggle the whole time. her little face lights up when we pick her up to play or just snuggle. and she has the sweetest habit of rubbing my arm when i'm holding her.

when i tell people about kaiya's condition they usually say something about how hard my life must be, or how rough it must be to deal with a child that has such a horrible condition. don't feel bad for me, i have it easy, i don't have to deal with teenage insanity! i have a sweet little girl that isn't embarrassed to give me hugs or kisses in public. she laughs at all of my jokes. she laughs when i haven't even made a joke. she loves it when i sing at the top of my lungs. she's rarely in a bad mood, she hardly ever whines or complains... i pretty much have a little bundle of sunshine by my side.

Saturday, January 17, 2009

cardiologist appointment

we had our appointment with the cardiologist yesterday. we were running late b/c the little girl that never poos all of a sudden decided to dirty her diaper - 3 times...ugh. and then of course b/c of these lovely subzero temperatures, a drive that should have taken 5 - 10 minutes took we were a little late, and forgot to bring "the binder". the binder is what i keep all of kaiya's medical records in. i usually bring it whenever we are meeting a new doctor or therapist. usually these people look at me like i'm insane for carrying around my kid's medical records, but i do it anyway b/c i get taken a lot more seriously when i have what another doc said to back me up...

so we go in and the nurse starts the interview process - and wouldn't you know she asks me if i have any of kaiya's past medical records with me...and then she goes into this lecture about how i should always carry them with me b/c it's so much easier for a new doc to get to know my child blah blah blah blah blah... i didn't even say anything to her b/c i knew i should have it with me, i usually have it with me - but i've NEVER been asked for it!

akaiya's blood pressure was 90/70 - seems low to me, but i have really low blood pressure too so maybe she's just like me. i asked the nurse about it and she said that some kids just have low blood pressure. so then we moved on to the EKG. i was told that kaiya would have to be very still for this test. oh my groceries. kaiya loves people, she gets really excited when people are doing things with her...this woman is putting little stickers all over kaiya's body, which is tickling her and making her laugh - then she sticks wires onto all of these stickers which gives kaiya something to play with. so now i have a kid that is giggling, pulling on wires, and bouncing around on the table b/c she is so happy to have all this attention - yeah, she's going to stay really still... so there was a miracle and the princess stayed still for short bursts which managed to work out for the test. the nurse left to get the doc....and comes back and tells me that b/c they don't have any records on my child they will have to do an echo too. (was she diggin at me about the records???) so now kaiya is delirious b/c she gets to have her shirt off, and there is goo being massaged onto her chest. she was yelling and taking big amounts of air into her lungs so she could yell louder. air in the lungs apparently obscures the view during an echo. my kid is so fun. so the nurse is a talker and is telling me all about her life, kaiya is yelling and jumping around, and i just want to see my kid's heart on the screen b/c apparently i think that i will be able to read it and see if something is wrong.... coincidentally, the little trisomy girl that is in kaiya's class just happened to have an appointment with the cardiologist earlier in the day. i'm sure the nurse was making a few comparisons between the two. this other little girl is very frail and quiet. here is kaiya - who more than makes up for her tiny size in decibels and rowdiness! so we complete the echo and wait for the doc.

he comes in and asks all the same interview questions the nurse asked...he was shocked that the cardiologist that saw kaiya when she was young didn't want to follow up on her. this panicked me A LOT! so he examined kaiya and said that he could hear the murmur. he then went to the video of the echo and showed me the hole in her heart between the two lower chambers. he said it's called an MVSD, a muscular ventricular septal defect. he said that children with this specific genetic defect (meaning trisomy 18) usually have weak or thin heart walls. kaiya's are thin but appear to be working well. he said that the hole in her heart is small and nothing to worry about. he said her heart is working great and that i shouldn't worry about her at all. he also said that he wants to see her once a year b/c kids with her condition sometimes have hearts that will start to function at a decreased capacity over time b/c of muscle tone (not something i had heard before).

so overall i guess the news is good. the doctor seemed very personable and nice. i didn't expect her to have a hole b/c i was told there were none, but apparently it's not something i have to worry about so i will try not to.

kaiya seemed to be bothered by some phlegm yesterday. she was gagging all throughout the day, especially when she layed on her back. i tried giving her stuff to drink, patting her on the back to get her to cough (okay, maybe it was more than a pat...), and nothing seemed to help her out. it was bothering her so much she wasn't able to get to sleep during the day for a nap. she finally puked up a bunch of phlegm at about midnight and was just fine afterward. she has been her usual bouncy happy self all day today.

Thursday, January 8, 2009

happy new year

well we are a week into the new year so i guess i'll do an update on where akaiya is at...

at the last weigh in she was 28.5 pounds. she hasn't been eating to well in school so hopefully her weight doesn't drop. i finally gave in and measured her height last night. everyone keeps telling me that she looks so long. every time i think she's gotten taller i measure her and there has been no change so i just kept putting off getting out the good ol measuring tape. well, her legs were looking really long so i figured i would check her out. she measured in at 40 inches. if she would straighted her little legs all the way out she might be a little taller but probably not by much.

akaiya is currently in the 1st grade. she attends school 5 days a week. the bus comes to pick her up at 7:15 and she comes home at about 3:30. it's a long day - but she naps at school almost every day (not that the teacher wants her to!) she has made her first real friend at school. i think that has been my favorite thing about the 1st grade for her. i never even considered that she could make friends because she doesn't communicate verbally, and she doesn't walk - but the little girl has a lot of charm. for some reason she has connected with this boy, and i think it's really awesome. he still informs me that she is his "girlfriend" when i walk into the classroom - gotta love 1st graders :)

akaiya has been trying her hardest to get herself into the sitting position from laying down. she has the strength, she knows what she needs to do, she just can't get all the steps in the right order...she has a great time giggling while she tries to get up though!

healthwise akaiya has been great. she has had a little cold or two, but nothing serious. at the recommendation of a ped that she saw when she had a cold (a doc that had never seen akaiya before) we will be seeing a cardiologist. hopefully this visit will not reveal any issues. the last time we saw a cardiologist she was about a year old and he said that she didn't need to be followed, so this recommendation came as a bit of a surprise. akaiya's biggest health issue is constipation. we have tried everything and have basically resigned ourselves to the fact that she's always going to have poopin' problems.

the things we are looking forward to in the new year is mommy's graduation in may (yay!) we are so excited about going to virginia for conference. hopefully a lot of east coast people that we have never met in person will be able to attend! i am hoping to get kaiya into hippotherapy. all of the research i have done makes it seem really worthwhile - and kaiya would probably get a huge kick out of seeing the horses. she absolutely loves dogs so she would probably think it was a huge puppy with funky hair :)

we would like to wish everyone a happy new year. thank you to all that read about akaiya and wish her well. we hope that every has a great 2009!