Monday, September 29, 2008

another one bites the dust...

tooth #4 finally made it's way out today. kaiya has been playing with this little loose tooth for awhile now. it makes me really nervous when she can push them out with her tongue and suck em' back in - so i pulled it out. somebody taught me a trick where you just twist the tooth to the side slightly so that's what i did and it popped right out. i can already see the tooth coming in underneath it! one of my fears was that we would have to wait forever for her adult teeth to come in because her teeth took awhile to come in originally, but they have come in very quickly...even quicker than some of the "typical" children we know! i guess you just never know what you're going to get in trisomy land... so now kaiya has a really big hole to stick her little tongue through - and there isn't any guard keeping the drool in so i guess kaiya will have to travel with a towel of some sort until the teeth grow in all the way. we'll also have to get her to the dentist b/c i don't know how her little mouth is going to hold all these big teeth!

Sunday, September 28, 2008


it was discovered that our crawlspace had apparently flooded when we had all that rain a couple of weeks ago. it was definitely a stroke of luck that someone went down there - usually we avoid going under the house b/c it's a dark scary place. so i had to go down and rescue all of kaiya's old clothes that were put into cardboard boxes instead of plastic bins. while i was taking care of that i decided to organize all of kaiya's clothes by size. i didn't think it would be such an emotional walk down memory lane but it was! i always think of kaiya as being this tiny little thing - she is... but it's just amazing to see the little preemie clothes that she wore for the first couple months of her life! and to see the little outfit that she wore for her one year picture, and realize it was sized 3 - 6 months... it was nice to be able to make the comparison between her teeny weeny preemie outfits and the little girls smalls that she's wearing now! i always think of her as the perpetual baby, but she is getting to be a kid now.

and then we go on to the fact that i have 14 plastic bins filled with clothes and shoes from the past 6 years of kaiya's life...

Wednesday, September 24, 2008

akaiya's new friend

this week we have had a new addition in our household. a doggie! kaiya has always loved dogs. for some reason she has always had a huge reaction to dogs, especially small ones. put a cat in front of her, she might smile or she might not. put a dog in front of her, and the kid lights up! so when a family friend asked us to dogsit we were very excited to "try out" having a dog - just to see what kaiya would do. so far it has been excellent. one of the concerns that the dog's owner had was that this dog isn't really used to being around children - she's actually a little afraid of them. but for some reason this dog is fond of kaiya. and kaiya absolutely adores her! the dog's name is maggie, and it's definitely going to be hard to give her back! one of the cutest things that lil maggie did was when she was given her toys the first thing she did was take this squeaky toy to kaiya and she kept putting it in kaiya's hand, trying to get her to play. kaiya thought that it was the best thing ever and was laughing and just vibrating b/c she was so excited! kaiya likes to move and roll around - but ever since the dog got here she has really been scooting around on the floor trying to get to her. it's awesome to see kaiya being so motivated to move and use her little muscles!

Kaiya playing with Maggie

Saturday, September 20, 2008


awhile ago akaiya was playing on the floor while i went upstairs to change the laundry. when i came back down kaiya was licking the floor and when i went to move her i noticed that her cheek was red. kaiya likes to lick the floor so i thought that she had just abraded it slightly while she was doing that. when i turned her over i noticed that she had blood coming out of her mouth. i started to panick a little bit at this point b/c i had no idea how she could have gotten an injury that would cause her to bleed like that. if she would have hit her head on the floor i would have heard i looked into her mouth and saw her tooth missing. at this point i was getting really anxious! i just happened to look behind me and noticed this tiny little tooth laying on the floor. i was really stunned to see that she had lost a tooth. i have my hands in her mouth quite a bit working on oral motor exercises and i would think that i would have noticed a loose tooth - but apparently i didn't. i still wasn't convinced that the tooth had come out of it's own accord so we made an appointment to go see the doctor. he looked at me like i was crazy and told me that kids her age lose their teeth. she was a little over 5.5 at that time and i thought that was pretty early...especially for a kid that didn't get all of her teeth until pretty late...but kaiya never does anything on a regular time schedule so i guess this is just par for the course. she has been going at a rate of losing one tooth every month and a half from then on. the teeth start growing in pretty quickly as well. i was worried that she would lose them all and then we would have to wait ages for them to come back in, but that hasn't been the case. one of the biggest concerns i have with her losing her teeth is that she's going to swallow one of them. so far we have been lucky and that hasn't happened. the second loose tooth was very obvious. kaiya would push it in and out with her tongue and play with it all the time. i tried a couple of times to pull it out myself but it was hanging on so i couldn't. then one day kaiya was sitting next to me on the couch and i heard "crunch crunch crunch". i looked around because i knew i didn't give her anything to eat so i was trying to figure out where the crunching was coming from. i looked at her again and saw her looking at me and chewing on something. i realized she was chewing on her tooth so i set to work on trying to pry her jaws open and get the little thing out before she swallowed it. she put up a fight before finally spitting it out. the third tooth was the easiest one. it was really loose, and when i tried to pull it out, it came out right away. now we are on our fourth loose tooth and i'm starting to think her mouth is going to get really crowded with all of these adult teeth! so far they look like they are going to fit, but she has a VERY tiny little mouth...we shall see :)

first tooth gone!

she loved to put her finger in the empty space...

trying to figure out what's going on in her mouth

Thursday, September 18, 2008

you can't tell me she doesn't know...

so this morning akaiya decided that she wanted to be "challenging". neither one of us do very well in the morning, so we try to keep them as peaceful and routine as possible. well lil miss thang woke up full of herself and decided she did not want to deal with anyone or anything. she started off by trying to dive off of the table that she sits on while i comb her hair - it takes forever to tame those curls and her bouncing all over the place does not make the job any easier. add in the very slippery goo that goes into her hair to make it manageable and you have a dangerous situation when this little girl decides she wants to make a break for it! so we resolved the hair issue with little to no injuries only to move on to breakfast. kaiya is not a big drinker - but usually in the morning she'll at least take a few good drinks to start off her day. well today she decided that she really didn't want her juice and instead of shaking her head no like usual, she chose to go all "crazy chicken wing" on me and slap the cup out of my hand, which sent it flying, and grape juice was EVERYWHERE! so instead of our usual routine which barely gets her out of the door on time, we had to change clothes, rush rush rush, and we still got her on the bus late... now generally i would be of the mind that she doesn't know any better, but when i look at her and she is smirking at me it's very hard to believe that she is completely innocent and doesn't know she is being a little snot! i almost think she didn't want to go to school today b/c she usually greets the bus driver with a big cheesy smile, but today she just stared at me with an intense glare and would not look at the bus driver no matter how much the woman talked to her... she's 6, is she supposed to have this much attitude?

Tuesday, September 16, 2008

last day of therapy

this morning akaiya had her last session of weekly therapy at the hospital. when she first started receiving services at Hope she was going to OT, ST, PT and Music. she was discharged from ST first, then OT, and today was our last visit with PT and Music therapist. we are very sad that our tuesday morning "parties" had to end, but we know we'll be seeing our friends at Hope soon :) akaiya really loved her sessions with these great ladies and learned a lot from everyone she worked with at Hope. Big thank yous to all the wonderful staff they have there :)

akaiya cheesing it up with jen

akaiya showing jen a lil love :)

standing and taking the shaker egg from julie

having a serious conversation with julie about the red egg shaker

the enternal battle...trying to keep her lil hands out of her mouth

Monday, September 15, 2008

we went to denver!

one of the best parts of our summer was our trip to denver for the SOFT conference. we always have a great time seeing everyone and we learn a lot from the different doctors and medical professionals. this year we got a lot of great tips from the feeding specialist about new things to try to encourage kaiya's eating. we also got some good information from a developmental ped. and seating specialist on what might work to make kaiya's chair more comfortable for her. as always the best part of conference is the families! we were able to see lots of people we had met in the past and also meet lots of new friends. here are a few of the pictures that i took this year...

Wednesday, September 10, 2008

Eating and gaining weight

one of the most common questions i hear when meeting new families is "does your child eat orally or are they tube fed?" well, akaiya is an oral eater. when she was first born she had a very weak suck and was not able to take much from a bottle so a ng tube was placed. after about a week her suck improved so the tube was removed. towards the end of her hospital stay akaiya had an incident with a possible bowl obstruction that caused them to switch to iv feeds only. when that was resolved we had to replace the ng tube because she had lost the small amount of progress she had gained with bottle feeding. when she came home she still had the ng tube placed. three days after we came home akaiya pulled the tube out and we never bothered getting it replaced. in the beginning akaiya needed to be fed every 3 hours. it took her around an hour to drink 2 oz of formula. we kept this routine up until she was 4 months was exhausting! at 4 months old the doctor told us to let the poor girl get some sleep at night! so we fed her every three hours during the day and just when she woke up at night - much better! we were also told to try and start introducing baby foods. the doctor realized that this was earlier than usually recommended, but he figured she would take awhile to start eating and he thought the headstart would be beneficial to her. we started very slowly...less than a tablespoon of cereal mixed with her formula. it took a couple of months to get her willing to eat the cereal and thats when we started adding fruit to it. she seemed to like it better with the fruit so we started to increase the amount. by about 9 months we were trying to stick to a routine of cereal with fruit in the morning, meat with vegetable & fruit for lunch, and cereal with fruit for dinner - along with her bottles. here is an example of what kaiya was eating when she was about 1.5:
1/4 cup oatmeal
1 jar stage 2 fruit
6 - 8 oz Alimentum formula
1 jar stage 2 meal
1 jar stage 2 fruit
6 oz Alimentum formula
1/4 cup oatmeal
1 jar stage 2 fruit
6 - 8 oz Alimentum formula
4 - 8 oz Alimentum formula
few bites of yogurt

like all kids akaiya had days where she didn't want anything, and she had days that she ate a whole lot - which made weight gain a real big issue in our house. as soon as i find the old records i plan on posting a graph that shows her weight over the years. i'll put down what i can remember off the top of my head right now:
birth - 5 lbs 1 oz, went down to 4 lbs 8 oz and then up to 5 lbs 7 oz when we left the hospital
2 mos - 7 lbs
1 year - 13 lbs
2 years - 19 lbs
3.5 years - 24 lbs, but then went back down to 19 lbs when she got RSV
4 years - 24 lbs
5 years - 25 lbs
6 years - 28 lbs

we've used various different products over the years to try and increase akaiya's weight - benecalorie, duocal, oil, doubling up on formula, and adding cream and cheese and other fatty foods to her meals. i used to really stress out about how small she was, but now i just realize that this is how she is, and as long as i'm doing my best to make sure she has adequate nutrition - she's going to be fine.

these days akaiya is eating pureed table foods. we are working towards getting her to eat more solid foods - it is a very slow process... she has the ability to chew and move the food around to the right place, she just doesn't have the desire to work that hard when she's eating. akaiya doesn't really have a "set" menu that she eats everyday like she did when she was younger but i will try to give an example of what she eats now.
scrambled eggs, french toast, oatmeal, cream of wheat, pancakes - we usually try to give her fruit with all of her meals so she would have any one of those items and some kind of fruit.
chicken noodle/vegetable, spaghetti & meatballs, chili, the list is endless, pretty much anything - yesterday she ate mashed potatoes, turkey, gravy and applesauce
again we just puree whatever we are having for dinner or sometimes she gets oatmeal and fruit or yogurt

what she eats really depends on how willing of an eater she is that day. if she's eating really well i'll try new foods and textures with her. if not, then we stick to old favorites to make sure she's getting the most calories possible. akaiya doesn't really like to drink and she's very picky about what she is willing to drink. we usually try to keep a cup of juice around and offer it to her as much as possible. we also make sure that she's getting lots of high water foods (like all the fruit) so we can try to compensate for her lack of drinking.

Tuesday, September 9, 2008

Ortho Appointment and Therapy

this morning we had to wake up extra early to get to the hospital for an appointment with the orthopedic doctor. we saw him around 6 months ago or so and at that time he didn't seem to think anything needed to be done. kaiya's PT suggested getting baseline xrays done of her spine so that if in the future we thought her posture was becoming an issue we would know where she started from. well, the ortho didn't see a big problem with her spine but thought her hips were tight so he had those xrayed and wrote a spine xray on the order also but the tech didn't see it and when i mentioned it she said it wasn't there....oh bother :( so when i went back to him he said it wasn't a big deal and we would handle it when we see him in 4 - 6 months... we had PT right after all of this running around and the PT was shocked to hear that he didn't get the spinal xrays because that was the whole purpose of the visit. she specifically talked to him a couple of weeks ago about this issue and that's how the whole appointment came about...we will probably be back in next week getting some spinal xrays :)
on a better note, akaiya did really well during her PT session. we found out that next week will be her last session at the hospital - i'm still very sad that we won't be going back every week :( hopefully kaiya will miss them too and decide to progress a litte further so we can start back up. in the mean time i'm going to start trying to figure out how i can get something built that would simulate a light gait...

The First Blog

well, i have been talking about creating a website for akaiya for the past 4 years... i finally found a medium that was so easy to work with i felt bad not signing up :)

so to start off with i will introduce myself - i am kelly, akaiya's mom. so enough about me, let's get on to the purpose of this blog - akaiya :)

akaiya was born september 4, 2002. she weighed 5 lbs 1 oz. and was 18" long. because of her low birth weight and her unwillingness to eat she was placed in the NICU. 3 days after she was born she had several spells of apnea which prompted the hospital she was in to transfer her to a larger facility. akaiya spent the first month of her life in the NICU at Cook County Hospital in Chicago. during that month we were informed of her diagnosis of trisomy 18 and told that we could expect akaiya to pass away at anytime. akaiya had other plans apparently because she is still here with us 6 years later :)

while akaiya has been a relatively healthy little girl, she has had her issues over the years. she is an oral eater and it has been a stuggle at times to keep her eating enough to gain weight. she also battled reflux from the time she was 1 until she was 4 years old. we were giving her prevacid for the reflux, but as she got older she didn't seem to need it (this was determined very scientifically by forgetting the medicine at home when we went away for a weekend...) once we noticed that she didn't have any of the reflux symptoms without the medicine we decided to take her off of it and she has been fine ever since. akaiya is extremely delayed physically and mentally so she has been receiving therapy(PT, OT, DT, ST) since she was 2 months old. in the beginning the therapists would come to the home and provide services. after akaiya turned 3 she aged out of the early intervention program and started going to school to receive services. in addition to school therapy akaiya also started receiving therapy at the hospital when she was about 4.5. unfortunately these services will be ending soon :( akaiya's most pervasive issue has been constipation. we have tried many different remedies and have just come to realize that it is what it is and we deal with it as it comes. akaiya has only been hospitaized once (besides when she was first born), and this was for RSV when she was 3.5 years old. she spent a week in the hospital and has not had RSV again. other than that, like i said earlier, akaiya is a healthy little kid. she spends less time in the doctor's office than most kids i know. we have been very blessed to have such a happy little girl.

Akaiya when she was first born

Akaiya in her first Halloween costume - an angel