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  • 2015
    • May
      • Ten Year
        05/05/15
        A decade. Thank you to all of you who have prayed for us over the years. We've skated past illness and inpatient stays for a long time fueled by those prayers and God's grace. In the near future we're looking at two nearly inevitable surgeries. Her hip is currently 40% out of the s

  • 2013
    • May
      • Eight years tomorrow
        05/04/13
        I don't update often and really, not a lot changes from day to day. It's our new "normal". Even the crises that come and go have reduced in frequency as we've found a better homecare company, nurses who don't stir up drama, and I've gotten the hang of the paperwo

  • 2010
    • July
      • Home and doing well
        07/27/10
        We've been home for a couple days and Rachel's doing well. She's comfortable and only needed Tylenol and Ibuprofen. She's still a little tired, but happy.

      • Doing great
        07/23/10
        Rachel's surgery lasted four hours and she's now resting comfortably.

      • Surgery
        07/22/10
        On Friday Rachel's going to have surgery to have her main salivary glands removed. She'll still have hundreds of smaller glands but the amount of her saliva should reduce by 80%, making it much easier for her to swallow and protect her airway. This will have the added benefit of her bein

    • June
      • Rachel's Birthday Party
        06/13/10
        Rachel had a great birthday party!



        Each time she didn't want to participate in something (e.g., picture taking) she went to sleep so she ended up wide awake watching her new iCarly movie with a huge smile on her face until late, late, late.
        She loved everyone sin

      • Happy Birthday!
        06/10/10
        :) Rachel is 7 today! :)

    • May
      • Med Update and Surgeries this Summer
        05/14/10
        After two weeks without any dilatin the side effects are wearing off quickly. But her seizure activity has picked up so she's going to start taking Topamax. Her neurologist also gave us the go-ahead to make an appointment with the neurosurgeon to have her baclofen pump taken out. We had visi

    • March
      • Neuro appt
        03/20/10
        Don't fall off your chairs, I'm updating two days in a row! Rachel is now going to be weaned off of dilatin by the end of April and now has saline in her pump instead of baclofen! If she doesn't have any issues with increased tone we can schedule surgery to have her pump taken out a

      • Circle Time
        03/18/10
        Today in Circle Time at school Rachel was in charge of the calender. She used her Dynavox to correctly say the month, what day it was, and what the weather was like outside. The kids also do an activity based on the letter of the day. If the letter of the day is 'B' and the teacher give

  • 2009
    • November
      • Dynavox!
        11/27/09
        She has it(!) but we're still working on the settings and trying to figure out the right way to configure everything. It takes a while to adjust the mounting system so that her eyes are lined up correctly.
        She was able to use it a little earlier today and was more open to using it when so

      • Dynavox in... but in pink
        11/16/09
        So we're sending it back to get the silver color she wanted. I was tempted for a couple minutes to just keep the pink one. But one more week of waiting is probably better than looking at really ugly pink for years and years on end.

      • Vaccination
        11/06/09
        Rachel is now vaccinated against H1N1. Whew!

      • Only a couple more weeks
        11/02/09
        Blue Cross approved her Dynavox but MA denied it. Now that we have the denial we can go ahead with everything and finally have it sent! It should be about a week but at the longest it could be a couple more.

    • September
      • Approved!
        09/21/09
        Rachel was approved for her Dynavox! She should have it within a month. We've been working on this for at least two years, it's so great that it's finally happening. Rachel regaining the ability to express herself is going to be incredible.

        :)

    • June
      • Happy Birthday Rachel!
        06/10/09
        Rachel turns 6 today! Happy Birthday Rach!

        (We should also be finding out if she's approved for her Eyemax system anywhere from now up until another 4 weeks.)

        Update: Luke's been trying to ask Rachel what she wants for her birthday. After blinking "No" f

      • Summer Vacation
        06/01/09
        Rachel's completely free for the summer. She has a break from therapy and school for a few months. For the first time in four years Rachel is without schedule.
        She still seems to be fighting some illness. Once her antibiotics started working with the last illness she was doing great b

    • May
      • 4th Anniversary
        05/05/09
        Rachel's been having a harder time with her seizures the last two days. She's on a new med that's making her liver worked harder so she processed her dilatin too fast and her levels were way too low. They drew up a lot of blood work yesterday and we should find out the results and m

    • March
      • Dynavox eye gaze
        03/18/09
        Today Rachel was amazing with her Dynavox!!! She has one for a 30 day trial. When she first got to school she went through each of her eight friends and said "Hi" to each of them, using their names that Wendy had put into the computer the night before. Then one of the students said, &qu

      • Two Front Teeth
        03/15/09
        A couple of weeks ago Rachel lost her two front teeth. We also have added a new seizure med to try for four months and if she reacts ok then we'll slowly wean her off of her dilatin. If she's able to be off of dilatin then she won't have to put up with some of the side effects such

    • February
      • Feeling better
        02/18/09
        Rachel's feeling much better but she's a little crabby now. I think she wants to go back to school. Although we did send her to therapy we're letting her recover even more before we send her back to school.

      • Starting to get better
        02/11/09
        Her fevers are definitely gone and she's not working so hard to breathe. It's now more like a really, really bad cold. Luke asked her yesterday if she could breathe better and she blinked yes. Thanks for your prayers everyone, she's still not doing great but at least we can see tha

      • Still sick but at least we're home
        02/09/09
        Rachel's been sleeping for almost the entire last 24 hours. We have antibiotics in case it is bacterial and neb treatments to help her get the gunk out of her lungs. So now we have everything at home that the hospital would have done for her and we're feeling a lot better about it now th

      • Hospital Stay
        02/09/09
        Rachel's in the hospital with something repiratory and viral. Could just be a really bad cold but with Rachel it's that much harder for her.
        We're still all trying to decide if she can go home or not because she still has to work so hard when she's breathing. I'll t

      • Spam
        02/08/09
        Not sure how it got past the filters but a bunch of spam started building up in the comments. Rachel seems to be doing a little better.

      • Sicky
        02/07/09
        Rachel was doing better from her stomach bug but now she's got something respiratory going on. We talked to her Dr. and it doesn't sound as if antibiotics would help, just doing more of what we're doing. We usually hate to bring her into the hospital because at home she has one on o

    • January
      • Rachel's sick
        01/28/09
        Sorry about the lack of updates. The PCA's leave before I get home and everyone is so busy with school. Rachel's really liking school but a couple of days ago she came down with a stomach bug. Keep her in your prayers, thanks!

  • 2008
    • December
      • Merry Christmas Everyone!
        12/25/08
        Rachel was so cute in her Christmas program this year. At the beginning of her songs we could see her start to sing along. We asked her if she was going to become a famous singer and earn a million dollars. She blinked "yes", Luke asked if she was going to give it to daddy, she blinked

    • November
      • Eye gaze computer
        11/29/08
        Last Tuesday Rachel had a great speech therapy session trying out the eye gaze computer that Dynavox has come up with. She did great! She kept telling her therapists and PCA's "Look, look" and "I want it, it's mine" when referring to the computer. Then she kept askin

      • Busy month!
        11/17/08
        Sorry for the lack of updates! I meant to update with pictures from Halloween but now I didn't want that to continue to hold up posting just to wait for when I have time to upload the pictures.
        Rachel is still having a great time at school and it now attending Kindergarten for a full da

    • October
      • New sneaky trick
        10/18/08
        The last two days at school Rachel's been having fun messing with Wendy. When Wendy leaves her side or is looking somewhere else Rachel lifts her head carefully out of her headrest and sets it on her shoulder (so she doesn't block her trach). She did it on the ride home 4 times! Finally

      • School fun
        10/08/08
        Because there were so many kids in each of the classes they're making a smaller kindergarten class. For the last three weeks Rachel's been having a lot of seizures in her regular kindergarten class. She's either tired, the room is too bright, there are so many kids, or a combination

    • September
      • Early riser
        09/25/08
        This morning Rachel got up at 12:30 am and wouldn't go back to sleep. At about 10 am Wendy texted from school and said that now Rachel's tired and cranky and having a lot of seizures (because she's tired). Not sure why she woke up so early but now they'll head home and she'

      • Pic from school
        09/17/08
        Dina sent a picture from school. The other students love playing with Rachel, they like to put stuff in Rachel's hands for her to hold when they play in the kitchen. Rachel's been having a great time too.



      • First full day of school
        09/16/08
        Today Rachel had her first full day of her class. Her teacher wrote home a note that Rachel had a great time and she was able to participate more during circle time with all of her switches. Rachel was able to bring the Dynavox computer but it didn't have the eye gaze system with it yet. She

      • Photo
        09/14/08


        I found the cable and here is Rachel in the van ready to go to her first day of kindergarten!

      • Camera USB cable
        09/11/08
        Is missing so I won't be uploading pictures anytime soon. Sorry!
        The other day Rachel was in her stander and watching 'Super Reader' on PBS the character on the TV was asking the kids to say 'D' and Rachel kept saying it over again. It's the one letter she can

      • First day of Kindergarten!
        09/09/08
        Rachel had a great first day of school. I was waiting to update until I had time to upload the pictures but as life is a little crazy at home (we're finishing the basement) I figured I better just post something and can add pictures and extra details later.
        Rachel loved school, she was

    • August
      • Open House
        08/28/08
        Today we went to Rachel's open house and met her kindergarten teacher. Rachel will be with her usual class two shortened days per week and one day of regular kindergarten for one shortened day per week. She'll have therapy one day per week so Monday-Thursday she'll be a very busy gi

      • Jam packed day
        08/21/08
        Lots of activity on Wednesday. Rachel had therapy and the rep from Dynavox (speech generating devices) was there to try out different switches and buttons. We actually needed Rachel to do poorly in order to prove that she needs a device that uses the new eye gaze technology. Dynavox is releasing

      • Still routine
        08/18/08
        Rachel's still have a great but very routine summer. We visited the neurologist and he upped a couple of her meds. She seems to be doing great and liking the extra attention from having PCA's in the afternoon now. At first I think she found it kind of frustrating but now she's used

      • Fun Weekend
        08/06/08
        We spent most of the weekend at a friends house. Rachel had a great time with all of the kids and taking a couple of walks outside. I feel bad when she gets bit by mosquitos but it's nice to see her have a little bit of a tan this year!

    • July
      • Sleepy
        07/30/08
        For some reason everyone is really sleepy at our house today. Rachel took a four hour nap!! Kaleigh took a longer nap than usual but Rachel very rarely naps at all. Sorry, not much is really going on. Rachel was sleepy at therapy and didn't participate as much as usual.
        My parents were

      • Thanks
        07/20/08
        Wendy is feeling better and Rachel never got sick. Thank you so much for your prayers!

      • Rachel might be out of the woods?
        07/17/08
        Kaleigh finally got rid of the fever but now Wendy had to go home today with a 103 degree fever. (Rachel's full time PCA) She's pregnant so the only thing she can take is Tylenol but she's allergic to that. Please keep her in your prayers over the next couple of days.
        Rach

      • Kaleigh's sick
        07/15/08
        Kaleigh has had a 101 degree temp for two days. Thankfully she's happy, not cranky but she does an odd 'startle' reflex when she gets too warm and will lose her balance. Even pre-accident Rachel had fever seizures so we're concerned that Kaleigh might start doing that too if sh

      • Circus Fun!
        07/08/08
        Rachel had a great weekend we spent a lot of time outside and the circus was in town! On Saturday we went to the show and Rachel watched the performers closely and smiled almost the entire time.

        Then on Sunday Rachel got to ride the elephant!





        She

    • June
      • Fully Staffed
        06/30/08
        I think for the first time in three years, pretty sure anyway, we are fully staffed with 4 PCAs and 3 LPNs. To consider us fully staffed I usually figure we need about 3 of each for availablility but this is great!

      • Busy, but not much going on ?
        06/22/08
        We're very busy now that summer is here but Rachel doesn't have school and has only been back to therapy once since her break ended at the beginning of June. We've hired 2 new PCA's and are looking for a part time LPN so that's been keeping everyone busy as well. Rachel�

      • Happy Birthday Rachel!
        06/10/08
        (Rachel's still excited it's her birthday.) She paid very close attention to her presents from Shelby this morning and later this afternoon we're having more friends over. She's going to be all partyied out pretty soon!

      • Thanks!
        06/08/08
        Thank you to everyone who was able to attend Rachel's party! Rachel was excited the entire weekend for her birthday. That morning she woke up at 4am! She was smiling and chatting all Saturday and very smiley today. Her actual birthday is on the 10th so she's not quite five yet!

      • Birthday Party next Sunday
        06/03/08
        Rachel's birthday party will be at our house at 2 pm on Sunday, June 8th. Feel free to drop by and say "Hi!" if you like.

      • Crabby, crabby
        06/03/08
        We had a great weekend but Rachel was crabby and very vocal. Luke asked "Does your tummy, ear, arm... hurt?" And she'd blink no to all except she said her ear hurt at one point. But it might have been because she keeps turning her head and squishing it into her headrest. She'd

    • May
      • Kaleigh's got it all figured out
        05/29/08
        When Kaleigh wants to get out of her playpen first she calls "Dada!" Then when that doesn't work she starts fake coughing. She must figure since Rachel gets attention every time she coughs that it will work for her too. Smart little stinker for only one and a half. ;)

      • Dynavox
        05/29/08
        Yesterday Wendy and I brought Rachel to school to meet a Dynavox rep to go through the process of proving and documenting what Rachel can't use so that we can prove that she needs an eye gaze device like the myTobii. (Dynavox is also coming out with one soon but it's unknown when.) Becau

      • Not much going on
        05/21/08
        Rachel's done with school and is taking a month long break from therapy so there really isn't anything exciting going on. She loved going for a walk and hanging out outside today.
        Yesterday Luke asked her, "Do you know what identical means?" She blinked yes. Then he aske

      • Stinker
        05/12/08
        Rachel was hilarious yesterday. At church she wasn't needing a lot of suctioning so we all sat in the back with her next to us. Usually I'm in the nursery with her because her suction machine is so loud. So Rachel decides that she's going to start "talking" during the ser

      • Anniversary
        05/05/08
        Today is the third anniversary of Rachel's accident. This year has been an exciting one. We've been able to see Rachel's personality and intelligence through her communication boards and her fluency with yes/no blinking. She really started to come out of her shell when she started

      • Bad day, Good day
        05/02/08
        On Thursday Rachel was really crabby at school. When asked if she wanted to go home, she blinked yes every time. She pulled her hands away when they tried to help her work on her art projects and was vocally 'crabbing' at them the whole day.
        Then Friday at school she was happy and

    • April
      • Beep
        04/29/08
        Rachel's been beeping since Sunday morning/Saturday night. At 17 mins after the hour you hear one quiet. "Beeep." And then nothing for the next hour. It wasn't an alarm sound but I assumed it was her baclofen pump and sure enough we were due for a refill so Luke and Wendy bro

      • UMD
        04/24/08
        Rachel did awesome last night. We left the light brighter in the room instead of dimming it and she also seemed to do better when we had the eye tracking box on the screen. It's a little back square that shows two white circles where her eyes are looking. Maybe she was watching her own eyes?

      • Under the weather
        04/21/08
        Rachel was sick at school on Friday. She spiked a temp really quickly, which was very odd for her. She was gunky over the weekend, a more aggravated version of my cold. But she was sick last night with another temp spike and her food not agreeing with her so we kept her home from school today.

      • Duck, Duck, Rachel!
        04/15/08
        Before school on Monday Rachel was up from 1 am until 6 am. Luke and I had a meeting with her teachers and school therapists so we drove Rachel and Wendy to school. Rachel looked as if she'd had coffee that morning. She was wide-eyed and chatting up a storm. She was sooo excited- maybe beca

      • Tooths ; )
        04/11/08
        Rachel lost her other bottom middle tooth! She's such a big girl, and this will make it harder to accidentally bite her tongue so that's really nice. There were clowns at school on Thursday and Rachel seemed to like them. They had a circus day!

      • Nevermind
        04/07/08
        I guess I spoke too soon about spring showing up. Whoops. Two feet of snow at our house so the kiddo's are home from school.

      • Spring soon
        04/05/08
        Rachel's already gone on 3 nice walks in the last few days. She's loved going outside. At school on Friday they had her push a button to make a ladybug toy activate. Once all the other kids in class heard the toy they gathered around to watch and then Rachel did even better button pushi

    • March
      • Stinker!
        03/31/08
        Wendy asked Rachel this morning multiple times if she wanted to go to school and Rachel said no each time. Then when Rachel got to school she slept through the whole thing. Then she would peek her eyes open, smile, and then go back to sleep. Once she got home she was wide awake.
        Kari visit

      • Yes she can!
        03/27/08
        Maybe we already knew this and I just forgot but Rachel can read her name. (Or recognize it at least) Martena also wrote down Hudson and Kaleigh's name and asked Rachel which was her brother's name. She looked right at the word Hudson! She also knew Karina so she might just have been lo

      • Whew!
        03/27/08
        I know I usually say we're really busy but Wednesday was packed. I took the day off and after we dropped off Rachel and Wendy at therapy, Luke and I went to Lowes to look into replacing our century old windows with our tax refund. I talked with her Speech therapist for a little while but it w

      • Still no school
        03/25/08
        Rachel's feeling much better now but she still didn't have school on Monday due to spring break. On Friday we worked on the stages of having her signed up for a CADI waiver. In the future it will allow us to build a ramp on the house, modify our van for wheelchair access, pay for respite

      • Feeling better
        03/19/08
        Rachel isn't completely up to par yet so Luke kept her home from therapy today. She has spring break this week and should be ok to go back to her normal schedule next week.

      • Sicky - Update
        03/11/08
        Rachel has a fever and has thrown up a few times. Please keep her in your prayers. Thanks!

        Rachel slept in until 10 am and woke up very crabby. Luke brought her in to see her Dr. and she has strep. They're on their way to pick up her antibiotics and hopefully she'll be up to

      • Big girl!
        03/10/08
        Rachel lost her first tooth today! I just noticed it was wiggly yesterday and today it was barely bumped and it fell right out!

      • Spring is coming... sometime... right?
        03/07/08
        Ugh, this winter's been pretty icky. Luckily we only got the short stomach flu and we didn't get the really bad one that lasts 5 days. (So far, knock on wood) Luke, maybe Kaleigh and I got sore throats but they went away after a couple days so I'll have to watch Rachel closely to se

    • February
      • UMD
        02/21/08
        Rachel got to play with the myTobii twice this week! We went back to UMD (we're going about once per month) and they kept it fun and let her pick what she wanted to play. She liked to pick playing with the baby and the bag game. When they play the bag game, Rachel will choose a color bag an

      • myTobii
        02/20/08
        We met with a myTobii rep during her Speech therapy time for this week. She had fun playing around with it but still wouldn't do as well as the very first time. It was really nice that her speech therapist was there to comment on stuff that Rachel usually does during her sessions with just he

      • Happy Valentine's Day
        02/15/08
        Rachel had a great Valentine's Day. She finally got to go to school and she was able to pass out valentines to all of her little buddies at school. Then when I got home I taped up her valentines on the wall where she usually looks when her head's turned to the left. (Even though it'

      • Brrr
        02/01/08
        It took Rachel a while to get over being sick but just as she was feeling up to going back to school and therapy the below 0 temps started. So poor Rachel has been stuck at home for two weeks. Rachel's pretty crabby about it some mornings. Hopefully next week it will warm up and she'll b

    • January
      • Welcome Baby Kaden!
        01/26/08
        Kaden was born last Thursday and Rachel was right that Kari would have a boy! He was 7lbs 3oz and so cute with beautiful skin and a perfect little nose.
        Rachel, Mom, and I visited Kari and Kaden in the hospital today. Rachel was so excited. She was smiling the entire time we were riding in

      • Doing better
        01/23/08
        Rachel seems to be feeling better. Much more bright-eyed and she went to therapy today.

      • Sicky
        01/18/08
        Rachel's feeling a little better but now she's really sneezy and a little congested. We have to really work hard to keep it from settling in her lungs or she could get pneumonia again this year. So far she's doing a great job coughing and we've been giving her extra vest treatm

      • Flu - updated again
        01/11/08
        Kaleigh and Luke came down with the flu this week. Thankfully Rachel hasn't caught it yet. Please pray that she successfully evades it again.
        We kept Rachel home from school though so that if she is already infected that she doesn't pass it on to other kids at the school and becau

      • Sorry for lack of updates... again.
        01/05/08
        For the last few weeks I've been working some overtime hours and we've been working on hiring new PCA's to cover for Kari while she goes on maternity leave. We've always needed a third PCA so we're working on finding two more PCA's. It's crazy trying to hire peop

  • 2007
    • December
      • Happy New Year!
        12/31/07
        Rachel is having a blast playing with her new Christmas toys. She had fun playing board games with Kari. Kari will make her identify the number using her communication board when she spins the wheel to find how many spaces she can go to help Rachel be more involved during the board game. She did

      • Merry Christmas!
        12/26/07
        Rachel had a very fun, very busy Christmas. She really paid attention to when we showed her the presents and she'd get a little distressed if Kaleigh came over to steal a toy. This year she was able to stay awake for her presents.
        My great grandmother got her a musical Tinkerbell snowg

      • Christmas at School
        12/20/07
        Today Santa, a reindeer, and an elf visited Rachel's class! Rachel was really watching Santa Claus and had her best smiles today! She really liked her candy cane that Santa gave her. She also received hair ties and more candy for Christmas from her teacher!

      • Sorry!
        12/17/07
        Sorry I haven't updated in a long time. Life is crazy but now I'm done with school for a month or so and I can catch up with a lot of things that were sitting on the back burner for a while. Like updating! Rachel hasn't gotten sick yet this winter so we're hoping she successfu

      • Thursday school
        12/07/07
        On Thursday Rachel had made a Christmas tree out of pretty pieces of paper glued onto a green construction paper tree. Luke asked her, "Did you make it for me?"
        She blinked, "No".
        "Did you make it for mommy?"
        "No"
        "Did you make it

      • Fun Monday
        12/03/07
        Rachel had a fun day at school. She got to roll on the therapy ball which she always loves. She also had a blast getting messy with paint and glitter during her art time. I'm almost done with classes for the semester so I'll be better about updating afterwards. Well, until next semeste

    • November
      • Still not a lot for updates
        11/26/07
        Rachel is doing great in school. She gets to play with the kids and they have all gotten to know her much better this year. One of the little boys played ball with her and a few of them played Barbies with her later that day. She's doing great in speech therapy too, identifying things that a

      • Happy Thanksgiving!
        11/22/07
        :);):)

      • Not a lot for updates
        11/16/07
        Sorry, Rachel's back into her "fall asleep at 3pm and wake up at 2-3am" so I only get to see her at 5 am for a few minutes in the morning. Rachel's been doing great with pushing her button at home. She was just happy happy happy. Then the next day she was bossing Kari around a

      • Speech and Shopping
        11/10/07
        We had another UMD appointment today but Rachel was so twitchy (from the med change?) that she didn't participate until the last 10 minutes of the session. It was only an hour this time and Kari was with too. I was so thankful she did so well last time so that they all knew she could do it, i

      • Neuro appt
        11/08/07
        Rachel's been doing well in school and therapy, sorry for the lack of updates but we've been really busy. Rachel has started doing her own personal daylight savings time that she seems to do every winter and has been waking up at 3 am. This morning she was up at 1 am!
        Rachel had a n

      • Happy Birthday Hudson!!
        11/02/07
        :) ;) :) :p ;) :)

      • Halloween pics
        11/01/07
        Here's Rachel with her pumpkin as promised. She woke up at 3 that morning and we kept telling her that she wouldn't get to go trick or treating if she didn't take a nap... but she didn't take one.



        She still got to go trick or treating anyway. It was soo c

    • October
      • Pumpkin Day!
        10/31/07
        On Tuesday Rachel got to help with her jack o'lantern. Kari drew out shapes that Rachel could choose to use for the eyes, nose, and mouth and then when I got home I drew them onto the pumpkin and cut it out. I'll take pictures of the kids tonight and will be sure to get one of Rachel wit

      • Library, School and Shopping
        10/29/07
        It's been such nice weather out that we took another walk down to the library to pick out books. Hudson, Kari, and I were picking them out and our bag was very heavy when we left! (It was a long walk back up the hill, oof!)
        Today Rachel had her Halloween party at school and she was a w

      • Tummy Time
        10/25/07
        Rachel loves laying on her stomach. If a little pillow is placed under one of her shoulders, it tilts her just enough to make sure her trach isn't blocked in any way. Yesterday Kari had Rachel on her tummy and when she went to turn her back onto her back Rachel kept her legs bent in a 90 degr

      • Depot
        10/21/07
        Saturday we met our friends Brooke and Austin and their kids at the Depot. The Children's Museum wasn't as cool as it used to be. Shoes? Really? Bring back the castle, costumes, and hobby horses! I don't know what they were thinking. Anyway, when we got to the Train museum there

      • Stinker
        10/17/07
        Rachel didn't want to work very hard yesterday so when it was time for her to be in the stander she yawned as if she was tired. Kari could tell she was faking and told Rachel she knew what she was up to. Rachel grinned and thought it was a great joke. She did it again when she was supposed t

      • Photo update
        10/13/07


        Here's Rachel and Kaleigh hanging out on Rachel's couch.



        Here's Rachel's communication board that we use at home.



        Here's Rachel ready for her first day of school.

      • My Tobii
        10/10/07
        The My Tobii is a computer that has a touch screen. There are small cameras in the bottom of the frame of the screen that determine what Rachel is looking at on the screen, allowing her to "push" the buttons on the screen using her eye gazes. When she looks at a picture on the screen, we

      • Crazy week
        10/09/07
        Sorry about being so bad about updating. The usual stuff is going on, nothing super new. It's just all happening at once so I've been bad about uploading photos. Today we're going to UMD to work with the speech therapy clinic on seeing if Rachel will be able to use a My Tobii. It&

      • Busy Monday
        10/01/07
        Rachel was so excited to go to school today! She was smiling and talking up a storm. Now they're sending letters home with the kids with all the activities for the day. Rachel shows up after breakfast so I'll start from there:
        Circle Time
        We practiced our "Good Morning&qu

      • Weekend
        10/01/07
        This weekend wasn't too exciting. Luke went to the Cities for a conference and stopped at IKEA and brought back a new dresser for Rachel. It has seven drawers and is a little bit bigger than her old one. In the beginning I was teasing her that she was going to need to go clothes shopping to

    • September
      • Rachel's so cute!
        09/28/07
        Luke was teasing Rachel about all the boyfriends she seems to accumulate at school. He said, "That's it Rachel, I don't think I can let you go to school anymore."
        And in her Rachel-voice she said, "Noooooo." :)
        She said it with a big smile on her face beca

      • Wednesday already?
        09/26/07
        I'll have to update more later, Luke threw his back out on Monday and we're all busier than normal.
        In the meantime I will cheat and used Rachel's teacher's e-mail to update on how school went on Monday:
        "Hello...Rachel did great yesterday. It is so nice, now that

      • Busy weekend
        09/24/07
        We made a quick trip to Duluth over the weekend. We went down Friday and had a great time hanging out with friends for the evening. Then on Saturday Luke helped my dad (and grandpa and uncle) reroof my parents' house. That took 12 hours and then we drove right home. That was in just enough

      • Thursday school day
        09/22/07
        I didn't get a chance to talk to Kari after work on Thursday so I'm updating from the communication notebook. ;)
        "Rachel was smiley this morning, fixed her hair then off to school. Rachel seemed to enjoy herself. She colored a book about fall and was very vocal during occupati

      • First Day of School!
        09/17/07
        I'll update more later (with a picture even...) but today I took a half day off and brought Rachel to school this morning. She had great day and was awake the entire time and hardly needed any suctioning. What a big difference since last year!

      • Little better
        09/13/07
        Rachel didn't go to therapy on Wednesday since she was still sick. She's feeling a little better and slept well last night.

      • Cold
        09/12/07
        Rachel's cold is doing okay but she only slept 4 hours last night and her heart rate is up which I'm never excited about but her oxygen levels are fine so as long as we don't let the gunk in her lungs sit in one spot too long she should do just fine. That's where her vest treatm

      • Wheelchair day
        09/11/07
        On Monday Kari, Rachel, Kaleigh, and I (all the girls again!) went up to Hibbing but instead of therapy Rachel got off easy. We met with all of her therapists and her medical supply company and talked about what she'll need for her new wheelchair. The one we've been using lately is a dem

      • Sunday
        09/09/07
        On Sunday we went for a family walk and ended up at the park. Rachel went down the slide with Luke and rode on the tire swing with me. We were figuring out ways to add a swing to Hudson's fort that Rachel would be able to play on. Now that I'm thinking about it, I think I'll google

      • Wednesday
        09/06/07
        Rachel's a little chunkier, she's gained 5 lbs! I have to e-mail the nutritionist and see if she wants to continue with the increased feedings. I also left a message with the neurologist's nurse (who is awesome) that the Klonopin doesn't seem to be cutting it for her now that h

      • Tuesday
        09/05/07
        Today Kari and I took Rachel to the library. It was a bit of a bumpy ride but she seemed to enjoy some of it. We got really good at finding paths that wouldn't jostle her too much. Then we all picked out a big bag of books for the nurses to read to Rachel over the next few weeks. On the way

      • Labor day weekend
        09/04/07
        We had a nice weekend. Luke worked on Hudson's tree fort (sans tree) and Rachel even got to go in it! Rachel was up late that night so when Linda came in at 9:00pm Luke and Rachel were hiding behind the couch. As soon as she closed the door behind her they popped up and "suprised"

    • August
      • Kaleigh
        08/30/07
        Kaleigh started walking last night!

        Yay Kaleigh!!

      • Again!
        08/29/07
        Here's another quick update. Kari was playing with Rachel on the therapy ball. Rachel loves this game. One of the things we are supposed to be working with Rachel on is getting her to vocalize in order for us to do something. Even her usual "yah, yah" is fine. But Kari was asking

      • Weekend
        08/27/07
        On Saturday all the girls went shopping (Rachel, Kaleigh, Kari, and me). I think Rachel loved getting out. She needed new shoes for school and we got her adorable boots and cute sneakers. Then we got a pair of jeans, shirt, and a zip-up hoodie to add to her new school clothes. It was nice to be

      • Really busy week
        08/24/07
        Wow, I'm getting really bad at updating. Sorry! On Tuesday Luke and I ran down to Duluth for the day to pick up Hudson and go back to school shopping. Hudson and Rachel are all outfitted for school except for new shoes. Rachel may go to school three times a week. Well, it would be Monday,

      • Saturday
        08/18/07
        Today Luke and I packed up the kiddos and went to Dairy Queen. I gave Rachel a bite of ice cream but she usually hates it so I didn't give her more. Then when we got home she started complaining. I was feeding Kaleigh some apricot and mixed fruit baby food so I asked Rachel if she'd lik

      • Quick update
        08/15/07
        Our internet is REALLY slow at home and I don't have a lot of time to update at work. Luke and I were in Chicago this weekend and had a great time at his cousin's wedding. Thanks to my parents for watching Kaleigh and Rachel and to Kari for working long days to help my parents out with R

      • Gastro
        08/09/07
        Today we made a really quick trip to Duluth to see her gastroenterologist. We also got Kaleigh's 1 yr old portraits taken. While I was doing pictures, Luke was walking around with Rachel in the mall and ran into Rachel's former nurse Mary and her sister. Of course Rachel wouldn't s

      • Adventure for the day
        08/09/07
        Yesterday the city was working on the water pipes by our house. This caused our water to sputter forcefully from the air in the pipes or look a nice murcky yellow. :p
        At one point I thought that it was fine for the night because all the yellow was gone and then it sputtered out and was co

      • Goofy Kid
        08/07/07
        Rachel was being silly in speech therapy yesterday. Remember a month or so back when Rachel was able to make up stories and they were usually about princesses? It's a story book that's set up like Mad Libs, she picks from pictures how the story will go. Well today in her story we lived

      • Corbin's Outta Space!
        08/06/07
        Hi All!
        As many of you know Corbin is Rachel's boyfriend from when they were both in inpatient therapy together down in Duluth. Miller Dwan had some experience with pediatric cases but they hadn't had kids as young as ours for a very long time. (Rachel had just turned two and Corb

      • Not much going on
        08/05/07
        I keep trying to come up with something to write about but not that much new is going on. Rachel is continuing to do well in therapy. She's turning her head well. One of her speech therapy goals was met. Her therapist wanted Rachel to be able to expand her upper ribs while breathing in. Sh

    • July
      • Pics of new stuff
        07/26/07
        Whoo hoo! Rachel has a new chair! It's the same color as Hudson's bike. "Toxic Green" Luke was giving her a hard time for not smiling in the picture. He asked, "Well I guess if you don't like it, should we give it back?" Rachel said, "Uh-uh" in the

      • New stander... well to us anyway
        07/20/07
        We haven't really done much exciting this week that pertains to Rachel... Kari got pinkeye of all the crazy things to catch so Luke just decided to hang out with the kids on his own for two days. (instead of calling someone else in) Rachel is borrowing a stander from therapy that is much more c

      • Monday
        07/16/07
        Today Rachel practiced more with letter sounds. They would ask her a word and she would look at the letter it began with. She got H for Hudson right away. Now we have letters at home to practice and also small words like "in" and "out". I don't even know how she knows al

      • Congrats Naomi and Ryan!
        07/16/07
        This weekend we picked up Hudson from camp and Luke and I went to Naomi and Ryan's wedding. We got a new camera on Wednesday so we have a bunch of pictures already, here's just a few.

        Here's Naomi looking gorgeous:


        Here's Rachel on the car trip down t

      • Neuro Appt
        07/12/07
        We did labs today. Rachel didn't like getting blood taken but she only fussed a little at the initial poke. When she was more sedated she used to not fuss at all so I'm probably one of the few moms who actually likes to see her child react to getting blood drawn or shots given.
        If

      • Rachel and Phonics
        07/11/07
        Rachel know the sounds of letters! She continues to surprise us all the time with these things that she's picking up. In speech therapy her therapist would ask her what word starts with the "buh" sound and Rachel would look at Blue. Or I think that's how they did it...
      • Good therapy day
        07/10/07
        In PT Rachel was able to lift her legs while in the walker. She didn't drag them either. If Bev tapped her leg Rachel would lift it forward. We have a neurology appointment this week and we'll probably ask if we can go down on her bacofen again.
        Speech gave us more ideas for helpin

      • Happy 4th and Crabby 5th
        07/06/07
        Rachel had a great 4th of July, she was happy and smiling most of the day. She didn't do as much talking but she was much happier than she had been back when we thought she had an ear infection.
        On the 5th though she was just crabby. She didn't want to really do anything... she crab

      • And another week goes by...
        07/02/07
        Wow, time is just flying by this summer! In therapy they are looking at ordering Rachel a new wheelchair. She's doubled her age and more than likely her length since we first ordered her stroller-like wheelchair. Luke's hoping this next one will be more sturdy, because even though the o

    • June
      • Week update
        06/24/07
        Now that I'm looking through Rachel's notebook I see I forgot to mention a couple of things that happened this week. Let's see, in speech therapy Rachel can turn the pages of a book, it takes her a while but she doesn't need help. She's also getting better at pushing with h

      • Photos
        06/21/07
        Since a bunch of photos were taken off the site when the server crashed here are some more:



        Here's a pic from when my mom came up to help me with the kids while Luke was in the Boundary Waters. Hudson's trying to snitch cookie dough and Kaleigh's trying to clim

      • Wednesday
        06/21/07
        I talked to Kari and as the test went on the words got really hard. But considering she just turned 4 she still had an amazing score! She did the usual stuff in therapy on Wednesday. I don't think they did it yesterday but last week they put Rachel on the flat swing and then put a big stack

      • Busy. . . summer?
        06/20/07
        Sorry I haven't been updating lately. Karina's started crawling and all the other things that pop up during the summer don't leave me a lot of time to sit down and add an entry. But today at work I updated some of the "static" pages on the side. Rachel finished her vocab

      • Wednesday
        06/15/07
        On Wednesday Rachel slept through most of speech therapy. That's what she used to do all the time. The second it was time for speech she'd be snoozing. PT probably wore her out, she did a great job with headcontrol practice and Bev's been working on stretching her out more these pa

      • Monday Vocab Test
        06/11/07
        In PT her therapist worked on her shoulders and hips. Both are a little tight. Rachel wasn't too happy about that but it's good they're getting worked out and that she's not so floppy anymore.
        In Speech therapy she had a vocab test. For each question on the test there w

      • Busy week and a Happy Birthday
        06/11/07
        Luke was in the Boundry Waters for a week long trip so I didn't update at all last week. Rachel's grandmas helped with the kiddos so everything went well. The cutest story I remember from speech therapy is they had Rachel be Simon for Simon says. She would use her communication board (t

      • Happy Birthday Rachel
        06/10/07
        :) It's Rachel's 4th Birthday today!! :)

    • May
      • Lastest accomplishments
        05/29/07
        Lately Rachel seems to be trying to copy what we say. Luke was copying her noises and Rachel was mimicking him right back. Then Kari noticed the same thing, when Kari would talk to her Rachel would try to make similar sounds/syllables back. Then Luke was teasing Rachel about something cute and Ra

      • Uh Oh
        05/29/07
        The server that hosted Rachel's site crashed over the weekend. Thankfully I still have the nurses's communication books to have a record of Rachel's accomplishments at school and therapy since Kari had such good notes on how each day went. Dina's e-mails from school had a lot o

    • February
      • Update
        02/20/07
        Whew it's been a while. Therapy has gone well, she's been sleepy lately.
        Speech therapy has been working more on her communication board and getting us to use it more often. Having her choose between 4 activities. And asking her to look at the "all done" picture when sh

      • Happy Valentine's Day
        02/14/07
        Yesterday Kari and Rachel made valentines for Valentine's day at school (tomorrow). I bought little Hello Kitty bags and Kari helped Rachel put treats in each one. Rachel was happy that morning but kind of whiny later in the day. It sounded as if she had a toy flute upstairs that she was play

      • School on Thursday
        02/09/07
        Again, a BIG thanks to Rachel's teacher for e-mailing how the day goes at school!

        Rachel stayed awake for her entire school session! She was all smiles when she arrived, and as the other children greeted her. Kari had about 5 children around her and Rachel as she read them a story. O

      • Busy Thursday
        02/09/07
        We had a really busy day on Thursday. Rachel went to school in the morning and we had everything ready to go and everyone in the van waiting so that when Rachel got dropped off we just put her in her seat, the stroller in the back, and drove off to Duluth. I didn't get the chance to ask Kari

      • Wednesday Therapy
        02/08/07
        Usually to help make it easier for Rachel to push the button we put it above her shoulder. Now OT is having her work on having Rachel keep her arms down and setting the button on her lap or a tray in front of her and having her push it there. It's really hard for Rachel to do this because her

      • Brrr!
        02/05/07
        Rachel did go to therapy today, Luke wrapped her up in an extra blanket to shield her from the cold so she never even shivered. She had good head control in PT but she was pretty sleepy for both speech and PT.

      • Welcome Gage Garrett!
        02/03/07
        Rachel has a new cousin! Gage was born at 4:45 this morning. He's 8 lbs 3 oz and 21 inches long. Congratulations Erin and Greg!

      • No Therapy or school
        02/01/07
        Not a lot to update on because we've kept Rachel home from therapy and school. We were going to send her to school but she probably got the cold from some of the other kids in the first place so we'll keep her home until she's fully recovered.

    • January
      • Feeling better
        01/30/07
        Rachel's already feeling better. Either she just had a cold that aggravated her lungs while they were still clearing up or we caught it early enough. Either way she's pretty smiley.

      • Update
        01/28/07
        We went up to the ER in Hibbing. Not too many other people were there so for an ER it was relatively fast (4hrs) and everyone was really nice and friendly. Her primary pediatrician came in to see her and he agreed that we could take her home. The first Dr. wanted to admit her overnight but she�

      • Sick again
        01/28/07
        Rachel is just beginning to get sick again so we're going to run in and get her some antibiotics. Of course it's on a weekend again so we have to go to the ER. She's feels pretty good, smiley and not having to labor to breathe like last time. We caught it really really early so she

      • Wednesday, Thursday
        01/25/07
        Rachel had a good day in both therapy and school. In therapy they worked on the same things and next time she goes I'm going to send pictures with of the family, puppy, and some other of Rachel's everyday things. School went well they had the jungle theme again and for show and tell Rach

      • Tuesday
        01/24/07
        Rachel's future cousin Gage is officially due! Rachel had a good day, very talkative and making happy sounds, not complaining ones.

      • Monday Therapy
        01/22/07
        Rachel was pretty sleepy for therapy today. In speech therapy they practiced swallowing and doing rib stretches so Rachel can take deeper breaths. In PT she had Carol and she stretched Rachel out.

      • Thursday School
        01/18/07
        Today I cheated on being creative and used Rachel's teacher's account of how the day went at school today. Thanks for the e-mail Dina! :)

        Rachel seemed much more alert today and required less suctioning than last week. She was smiling when she arrived and then Kari read her the

      • Game night and Therapy
        01/18/07
        Our neighbors and Luke's mom and step-dad were over for dinner and game night on Tuesday. Rachel (and Kari) helped me measure ingredients to make bread for dinner. Then Rachel eventually fell asleep in her chair for an hour or so. We brought her upstairs to get her dinner but then she woke u

      • Monday Therapy
        01/16/07
        Bev, (PT) was very happy with how Rachel did today even though Rachel had been sick for a couple of weeks. They worked on head control and knocking stuff over. In Speech, Teresa showed Kari mouth stim exercises. Another thing they do is hold up two toys and ask Rachel to look at one. If she look

      • School Day
        01/12/07
        Today I went with Kari to Rachel's school. It had been about a month since the last time Rachel was there so she got tired out by all the activity. Before the break she was able to stay awake and would hardly need any suctioning.
        While the other kids were eating Kari read Rachel a stor

      • Wednesday Therapy
        01/10/07
        Rachel had a great therapy day today. She had a 45 minute nap before they left for therapy and her speech therapist thought she did so well that we should try to do that every therapy day. In OT Rachel had fun riding the peanut ball with Germaine as if it was a pony. She was able to do that for 1

      • Monday Speech Therapy
        01/09/07
        I've been so tied up with Rachel being sick I forgot all about therapy! Rachel did go to speech therapy on Monday and she did very well. Still working on getting her to look at pictures. (Her therapist holds up two pictures and asks her to look at one of them.) She does good when the pictur

      • Good night
        01/08/07
        Rachel kicked this really fast. She doesn't need extra oxygen and she's getting a lot of her strength back. Thanks for praying for her!

      • Sunday
        01/07/07
        Rachel's feeling much better now. We're watching movies in the living room this afternoon. Rachel has her speaking valve on and is making up for the last week of having to be quiet. (We didn't put the valve on while she was sick.) She's been chattering non-stop since we put it

      • Saturday
        01/06/07
        Rachel's feeling better, she even tolerated her stander for an hour today. We watched a bunch of old videos and we had Rachel watch movies of when she was a baby. Some of them I didn't remember as well so it was really fun. Even the first therapy videos we did were almost a year ago. S

      • Getting better
        01/05/07
        Rachel is a little better today, she's smiley and needs a little help from the oxygen. Hopefully she'll be strong enough next week to go back to therapy and school.

      • Dr. Visit
        01/04/07
        We just got back from the Dr. and he said that we should expect that it will take her a while to get over this. Normally people who get pneumonia will have a cough for weeks. Then it will start to look a little worse when all the gunk in her lungs finally breaks up and she's able to cough it

      • Still Sick
        01/04/07
        Please keep praying, because she hasn't kicked this yet. We're going to go see her Dr. and maybe get more x-rays of her lungs. She's still on a little oxygen and she's had about 4 days of antibiotics. Luke's on his own today so I might go home early from work and we'

      • Still not feeling too great...
        01/03/07
        Rachel is still pretty sick. She had a really good nap from 5pm until whenever she woke up... sometime after 9pm when the nurse got here. But then she needed a lot of suctioning and a little help from the oxygen again. At 1 am her nurse gave her a nebulizer treatment. When I got up she was tryin

      • Better so far
        01/02/07
        Rachel needed a lot of suctioning today but she seems to be doing much better. She's sleeping now and I turned off the extra oxygen and she's still doing okay. Hopefully she'll have a good night.

      • Okay night
        01/02/07
        Rachel had an okay night. I put just a little oxygen on her to help her out a little bit and a nebulizer treatment at 3 am. Her nurse gave her extra vest treatments and her lungs sounded a little clearer a couple of times. It's so nice to be home and have some one taking care of her that kno

      • Home again, home again, jiggity jig . . . .
        01/01/07
        Rachel seems very happy to home. We have more oxygen tanks and a nebulizer. As back-up for the O2 tanks we have an oxygen concentrator that filters out everything but oxygen out of the air. We won't normally need them but it's nice to have them tonight since her lungs haven't cleare

  • 2006
    • December
      • Pneumonia
        12/31/06
        Last night Rachel had a pretty labored breathing so her nurse had oxygen on her. Even then her oxygen level wasn't the best so this morning we brought her to the ER in Duluth. (Since it's a Sunday and the clinics aren't open.)
        All she really needed was some antibiotics but wh

      • Saturday
        12/30/06
        Rachel's still under the weather with an upset tummy and is running a temp if she doesn't have any tylenol or ibuprofen. Kaleigh isn't sick, after her amazing gastrointestinal pyrotechnics yesterday morning she was fine.
        We now are officially fully staffed! I think for the ve

      • Sick babies
        12/29/06
        It's still pretty early but I think both Rachel and Kaleigh are sick. Kaleigh seems okay now but after I fed her this morning she threw up everywhere! Luckily I took the day off yesterday. Originally I was thinking that I should get some more sleep or I might get sick. I was also thinking t

      • Sick again?
        12/28/06
        Or she might still just be sick from before. She's throwing up again and looks pretty miserable.
        She was okay during Christmas and it really wasn't too strenuous on her, we had a pretty relaxing Christmas. We got to see family this year but she still kept up her schedule of fallin

      • Kaleigh Pics
        12/21/06


        Here's Kaleigh in her Mad Bomber hat.


        Here's Kaleigh doing a good job holding her head up.

      • New Puppy
        12/21/06
        Luke came home with a new puppy yesterday, with all we have going on I'm not so sure if I'm sold on the idea of two dogs. (We already have Bailey.) But Rachel LOVES the new puppy! She reached her hand out to pet it and was doing a great job tracking it with her eyes. She has the bigges

      • Communication Board
        12/20/06
        The other day Rachel came home from therapy with the beginnings of her communication board. She likes to bounce on one of those big therapy balls so on the piece of plexiglass are two squares of paper. One has a basic picture that is a big person standing behind a little person that is sitting on

      • Wrestle Mania!
        12/18/06
        Probably not a title you expect to see on Rachel's site, huh? ;)
        On Sunday Hudson and Luke were wrestling in the living room at Grandma's house. Rachel was on the couch so Luke had Hudson lay on his stomach on the floor so Rachel could "wrestle" and "body slam"

      • Tight arms
        12/14/06
        At therapy yesterday her OT said that Rachel's arms don't turn down very well while out and at a 90 degree angle. (Kind of like you're signaling for a turn when your blinkers aren't working.) So it's a good thing OT has started back up and we can work on stretching that ba

      • Boring, boring
        12/13/06
        Sorry I haven't updated lately. Rachel's feeling a little better but she's still thrown up once a day or so. She hasn't had therapy or school for a while either so there hasn't been much new going on. It's getting close to Christmas when Bill said he'd stop for

      • Still Under the Weather
        12/08/06
        Rachel threw up twice yesterday and is still really gunky with a cold but she was less crabby by the afternoon.
        I didn't get to see her awake for very long because I brought Kaleigh to her checkup. (She's 14 lbs now.)

      • Home from School
        12/07/06
        We kept Rachel home from school since she's still a little sick. She's not that bad anymore but it's so cold out today!

      • Sick?
        12/06/06
        Rachel might be sick. She threw up a couple of times last night but she didn't have a fever or act like she felt bad. One of her night nurses had a stomach bug so she might have something.
        Keep her in your prayers today, we kept her home from therapy because she looked a little crabbie

      • Comments instead of Guestbook
        12/05/06
        We no longer have an official "leave a note of encouragement" section anymore but please feel free to leave a note! It always make our day to hear from someone!
        Under any one of the entries click on "add comment". The nice thing about the new system is your comment won�

      • Busy Weekend
        12/03/06
        Pretty last minute the kids and I went down to Duluth on Saturday afternoon. Luke stayed up north to go black powder hunting. I brought Hudson and Kaleigh to Hudson's friend's birthday party while Grandma watched Rachel. Then Hudson picked out a Christmas tree with Grandpa. We all made

    • November
      • Wednesday's Therapy
        11/29/06
        Rachel had a great day in therapy today. Usually Luke has to leave because she thinks it's time to go so she won't do anything if he stays to watch therapy. She still did really well, she was talking up a storm in speech therapy. They would ask questions and she would seem to respond at

      • Welcome to the New Site!
        11/27/06
        Joe has helped me change the format of the site so now it's more like a blog. I'll be able to add pictures and create new pages on my own now so hopefully I'll get pictures up more often. On the links side, I made extra pages that might give more background info to someone who'