LATEST NEWS

March 18, 2005

After I posted the update below, I received an email that Preemie Magazine has launched!  Click the link to read all about it.

March 18, 2005 - Happy Belated 5th Birthday, Kellie!

Yes, our beautiful little girl is FIVE YEARS OLD!  WOW!  I'm having a really hard time with this one, and with her brother turning seven two weeks after her birthday!  I feel so old and my kids are getting so big!  We can't believe Kellie will be in kindergarten starting in June (summer school).  Where has the time gone?

Yesterday I attended a planning meeting for a parent panel I'm going to participate in on April 8th.  Here is the conference brochure: Kansas Health Ethics Conference.  I'm very honored to be a part of this panel!  As part of the meeting, I gave an overview of Kellie's life and I really hadn't talked about it in awhile.  I really realize how far she's come.  I also look back at all we've been through the past five years and then it hits me why I feel so old!

Also this week, Kellie and I attended a Shriner's meeting to give an update on her status as a patient.  Last week we made the trek to the Shriner's Hospital in St. Louis for her annual check up with the orthopedist.  All looks great with her, especially her hip X-ray, which is something they always check.  She has not grown enough in the past year for new AFO's.  So rather than casting her for new ones, as they usually do at the appointment, they just gave her current pair a "tune up" with new Velcro.  We're hoping this pair will last another year so we can avoid two more long trips.  Shriner's continues to be a blessing because, once again, Kellie has a new insurance plan.  This is her seventh or eighth - I've lost track.  This plan does not pay for her AFO's just like the previous ones.  On the "market" her AFO's would cost us about $4000.

At least one great thing about our new insurance is that for the first time in our 14-year marriage, we are both on the same plan - and the entire family!  This is very helpful because we've always had at least two, if not more, deductibles to pay out.  The new plan is a high deductible plan with the new Health Savings Account (HSA) option that became available this year.  The insurance agent said to us, "who's going to meet the $5000 deductible anyway?"  Surprise!  We met it in less than one month.  Kellie alone took care of it by needing to go to the ER for bronchiolitis last month.  She was admitted for two days, so that just about met the deductible.  Then her dad also had a CT scan about the same time!  In spite of having to pay so much out of pocket, it will be much easier on our finances than in years past.  For that we are very grateful!

The virus that caused her bronchiolitis (which thankfully was NOT RSV like last year!) also caused a double ear infection, so know we're dealing with that and hope it clears up and we don't start another ear infection/fluid cycle like in the past.  She's pretty much been diagnosed with mild intermittent asthma, instead of the previous "reactive airway disease" (RAD).  Asthma has always been pretty much a given with her extremely premature birth and length of time on the ventilator.  I really think her RSV-induced pneumonia in January 2004 pushed her lungs over the edge.  This time, though, she loved having an inhaler for her Albuterol, rather than the nebulizer.  It's so much quicker, and more portable, too!  I really feel for the first time, that Albuterol actually helped her symptoms.  For the first time since her NICU days, Kellie was put on steroids to help her lungs.  They turned her into a little piggy and she gained two pounds in three days!  She can really use those pounds!  However, it's really noticeable when carrying her and my back is screaming at me!  She was so funny when she wanted to eat and drink all the time.  We've never seen her like that.  It's only been about the last six months that we've even seen her have any appetite.

This month we had Kellie's IEP review meeting and to discuss her preschool-to-kindergarten transition.  It was a pretty long meeting, but a good one.  I have not seen the final IEP yet to look at the goals that were written, but I imagine it will be acceptable.  Kellie will go to kindergarten all day.  In the morning she'll be in the general education classroom, then transition to the special needs class for more intense education and therapy.  She'll attend the new school in June for summer school so she can get to know the building, and her new teachers and therapists can get to know her before fall classes begin.

Since she was ill at the time she was to have her well-child check, it's been postponed for another month.  She's up to 32 pounds (5%) and 40 inches (10%).  Yay!  She's staying on the growth charts!

Kellie stalled for awhile on using signed speech, but she's starting to pick it up again and use it more appropriately.  She's stringing several signs together, which is great.  Her biggest cognitive jump lately is being able to spell many three-letter words.  She started with: cat, dog, pig, and cow.  Then she added "war".  I couldn't imagine where she got that one, then I realized that Jacob has been studying the Trojan War, and she must have seen it on a book.  Then she started spelling:  Ron (grandpa's name - she saw it on the return address of her birthday card), act, way, may, say, bug, big, jet, and so many more I can't remember them all.  She spells a lot on her own with her Leap Frog Word Whammer (a step up from the single-letter Fridge Phonics).  She'll also spell words on Word Whammer if we ask her to spell one, since she knows the phonemes.  She also loves her Leap Frog Learn to Read Phonics Desk which was another Christmas present.  I ordered her the Signing Times DVD's this week and I can't wait to show them to her and her brother (he loves to help her learn new signs).  She learns so well with her Baby Einstein and Leap Frog DVD's, that I'm sure she'll love them.  Another series she likes is the Praise Baby DVD's.  She received God of Wonders for her birthday.  I really love it, too.  The DVD has audio options for an adult voice, child voice, or instrumental.  It's very similar to Baby Einstein, but rather than the music of famous composers, it's set to beautiful praise music. Kellie has a new favorite toy, the LED Flashing Spinning Ball Wand. She received the linked version as a gift and we also purchased a similar one at ToysRUs.  When we find toys she loves, we like to get more than one!  The LED toy has many different light patterns as it spins, and it also vibrates - three things she loves!

Kellie continues to make improvements with walking, but still refuses to let go.  Today I got her to walk by only holding on to the tag inside her shirt.  That is how little support she really needs, so she's really close!

Well, there's probably more to tell, but I can't remember it now!  We still have about 30 new photos to load.  I don't know how to do the "techie" part of loading them in, so I have to wait for my better half for that!  As you can see, I thought I uploaded a new photo in the upper right, but it's not working.  I'll have to wait on Peter to fix it for me.  Hopefully we'll get the new photos up soon, as she's really matured a lot since the last set we uploaded.

Thank you once again for reading and taking an interest in our sweet girl's life!  We are so blessed!

Julie

December 29, 2004 ~ Merry Christmas and Happy New Year!

Just so you know, especially if you've received our family Christmas letter, we're working on a long update about Kellie.  We hope to have it in the next day or two, and also some new photos!  Please check back early next week!  Thank you!

WOW!  We hit 40,000 visits today on the hit counter!

Julie

July 5th, 2004 - 21 new photos!

We just posted 21 new photos of Kellie!  They're all on the "latest photos" page, which is the default when you click the photos link.  Remember the photos "start" (oldest) at the lower right thumbnail, so that the most current is at the upper left.  Click the lower right thumbnail to open it, then scroll through the rest with the "next" link at the top of that page!

There are photos of her new AFO's, playing in the dog's water bowl, having fun at the science center, and getting into trouble!  There's also some photos of pictures she's drawn and an example of how she writes her name.  Enjoy!

July 3rd, 2004 - Happy Independence Day, America!

Wow, I don't even know where to start with this update!  SO much has happened in the past three months with Kellie!  It is all very exciting news!  She has made so many great improvements, it's unbelievable!

Where to start?  Well, I think the biggest news is she is finally getting the idea behind the Picture Exchange Communication System (PECS).  We've been working on this for over two years.  Kellie's latest IEP (Individualized Education Plan) looks something like this:  Sample PECS IEP Objectives.  Here's a sample of picture cards. The main reason she's finally understanding PECS is that she is finally feeling a wide range of emotions and acting on them.  For instance, she actually knows when she's hungry now.  She also knows what she wants to eat.  Okay, so it's usually a choice between eating Cheetos or Goldfish crackers, or drinking her Carnation Instant Breakfast; at least she's deciding on something, though!  She also knows when she's in pain, happy, or mad.  For all three of those emotions, however, she doesn't use PECS - she screams!  She screams very loudly, I might add!  It reminds us of her screaming days in the NICU...only much, much louder!  The problem is when you hear a blood-curdling scream from somewhere in the house you have to assume she's hurt.  But then you find her and she's just mad some batteries in a toy stopped working, or you find she's actually laughing/screaming because she's having fun!  She has had a few more painful incidents, though.  She fell down our steps again and messed up her nose.  This time wasn't nearly as bad as the fall in December that sent her to the ER, or her fall from her wheelchair in March, but it was bad enough.  She also has a big goose egg on her forehead from a little altercation with her brother!  He caught her messing with his stuff in his room and tried to carry her out of the room.  She protested and in the process hit her head on the wooden frame of his bed.  She doesn't go in him room much anymore!

Kellie is adding many picture cards to her PECS vocabulary and she's really enjoying it.  It is very self-motivating for her to make a request and see her needs met.  She rarely ever growls or grunts anymore, now that she has cards that say:  eat, milk, Cheetos, Goldfish crackers, more, all done, help, wait, down, etc.  It has opened up a whole new world for her.  We are very appreciative of her school therapists, teachers, and paraprofessionals who have worked so hard  with her to get her to this point!  Preschool is a wonderful thing for her!  She loves school and waits rather impatiently (something to learn!) every day for the bus.  Summer school finished up this week, so she's going to have a long eight-week wait to return!

Kellie's made big strides in her cognitive abilities from attending preschool also!  She can identify all the letters of the alphabet (thanks to Leap Frog Fridge Phonics read my Amazon review (fourcrooks)), knows at least 12 colors and 10 shapes, can identify the numbers 1-10 and put them in order, and continues to improve her writing and drawing!  She can still write her name very well with our hand on hers.  The therapists have started weaning her off this practice and we're working on it now this summer.  She can do the "K" in her name with only 50% support now, and we expect that to increase rapidly.  She just doesn't have the fine motor skill, nor the determination (right now) to do it.  It has to be on her terms!  In addition to writing her name, she'll write nearly any letter or shape you ask her to.  We have some photos of her work to post soon.  She will also draw a face and body of a person, complete with facial parts, ears, hair, etc.  It's really cute.  Since the Baby Einstein video/DVD series is her favorite, she can also draw the Baby Einstein logo if you ask her!  She is a Baby Einstein fanatic!  If you want to see an incredible amount of joy come from one tiny girl, just ask Kellie, "do you want to watch Baby Einstein?"  She can sit and watch them for hours!

Speaking of Baby Einstein, the videos have been instrumental in making Kellie decide that wearing her glasses is okay.  Next month marks the two-year anniversary of when she got them, and just last month she decided they were okay.  Since Baby Einstein is so motivating for her, we told her to watch them she had to wear her glasses.  It took a night of cause-and-effect training to get her to comply, but ever since, she will keep them on when watching any TV.  She will also wear them at select times for other activities.

Kellie has made huge strides in her social abilities!  For the first time in her life, she's reaching up to be held!  I think Jacob started this at eight months or so (it was long time ago...can't remember for sure!).  This means so much to us!  She not only does it when she is mad, like stuck behind her room's gate, but also when she just wants to be held or play!  She makes wonderful eye contact with us, grandparents, teachers, and classmates.  She still is leery of strangers.  She is constantly wanting to sit our laps, which is so wonderful!  I don't even mind it when I'm trying to do work!  She is persistent and won't give up until she's sitting in your lap, even if it means scaling your body, climbing on stacks of work, or prying your arms open!  She's a character!  She is very persistent with things like that, but when it comes to things like learning new skills we want her to, forget it!

She has made lots of progress with motor skills, in spite of her desire to take the easy way out!  She is now walking great with one hand held.  Well, the left hand anyway.  For some reason she rejects having only her right hand held when walking.  She falls then she thinks it's funny.  She's stopped pulling her legs to her chest when we want her to walk, and she's steering her walker very well.  Yesterday she did two great things.  She independently walked up the three steps from our garage into our living room!  She put both hands on the rail and did it herself!  I don't think she really realized it!  Her physical therapist has been trying this for months.  She finally decided in her own time!  At bedtime, I was walking her down the hallway, and when she got to her gate (it's in the hallway, perpendicular to her doorway and has a "door"), she let go of my hands.  She held on to the gate, then the wall, then door, to get into her room.  I asked her to turn on her light, which was on the opposite wall.  She turned around with very little support, and turned on the light.  Then she had this look like "now what, how do I get to my changing table?" (no support).  So I helped her walk over there.  These were huge independent walking activities!

(Right now I hear her screaming at her gate wanting out of her room, as she just woke up.)

No, she didn't want out of her room, she asked me (in her way) to snuggle and rock her!!!!  I never thought I'd say that!  Yes, she loves to be snuggled (at times).  It is an amazing improvement!  She used to only allow it when she had a fever or other "feel bad" illness.  Because she likes to sit in laps and be snuggled, she also loves to read books.  Her favorites are Sandra Boynton books (mine, too) and Dora the Explorer.  Another huge step in her development, besides actually attending to a book, is that she'll point to things in the book.  If we say, "where's the moon/heart/cow/yellow circle?" she'll point (touch actually) the item!  This is very big!  Sometimes she "asks" "what's this?" by touching something in a book.  She'll also count by touching each item as you count.  It is so cute!

Kellie also loves to hold our hands.  She especially loves this at the dinner table.  She realized she loved this once we started having her hold our hands for prayer.  Once she allowed that, she found out it isn't so bad.  I love holding her hand!  The problem is when I'm eating is that she's on my right.  Daddy gets it good because he can hold her hand with his left and still eat!  At the table, we've also convinced her that a chewable vitamin is an okay thing.  It took a lot of work and a lot of screaming, but she can chew one up now.  They're prescription and a little larger than your typical vitamin, but she's decided it's okay.  Another huge leap!  She's also allowing a spoon in her mouth.  It has to have a desired food like dry Cheerios or a small piece of Cheeto, but at least she's allowing it in there.  We're not sure why she regressed on spoon feeding two years ago, but we'll take the improvement that's coming now.  She eats a lot now.  At summer school her speech therapist was shocked at how much she ate!  She's also drinking a lot more milk with CIB.  This has helped her gain a little weight.  Last month she weighed 29 pounds!  Woo hoo!  That puts her at 10% on the weight chart!  She's also 38+ inches which puts her at an amazing 25% on the length chart!  I never thought I'd see the day where she was above 3-5% on the charts!  Jacob is at 25% on the height chart, so she's probably found her genetic height.  It seems true what they say about preemies and their growth; that they need one year of catch up for every month they were early.  She's hit that now - four years for four months early!

Related to her oral skills, she is finally allowing us to brush her teeth!  It's a good thing, too, as they were getting a bit yellow, and not from NICU medicines!  It was just too hard to get in there to clean them!  Thankfully since she doesn't eat a lot and most is liquid, there's no decay.  She not only lets us brush, but she also tries to help!  She has a sequence/routine picture card strip that lists the steps in order, so she likes to work through that.  Her favorite part is squeezing the toothpaste on the toothbrush.  She doesn't understand the concept of "gentle" so we end up with a lot of mess!

Kellie's had another chronic ear infection/fluid problem this year.  This year's started with the strep infection in March, then it went from there.  Last month she caught a virus that gave her an extremely high fever (nearly 105 degrees) and a bad sore throat.  When we went to the doctor about it, her ears looked pretty good, but with the new virus, that may have changed.  We go back next week for a re-check.  This might be the year we go to an ear, nose, throat doctor.

Kellie has a new thing she loves to do.  She loves the dog's water bowls.  Forget a swimming pool this summer!  She likes to lean over and dip her bangs into the water, then lift up and watch the water drip.  We have an entire sequence of photos of the process.  First, stir the water to get it spinning, next, dip your hair in, then watch it drip!  She does enjoy swimming also.  Her sensory issues are getting better, especially her short-lived over sensitivity to smells.  She still does a lot of self-stimulatory (stim) activities like licking things, spinning things, and banging her wrists, but there is some improvement.  She loves to say "eeeee" for Kellie.  She also likes to pat our chest for our names, alternating one hand for each syllable.  She pats "Kell - ee" on herself, "Mom - ee" for me, "Dad - ee", and "Jay - cob".  She thinks it's really fun to just pat with one hand so you say, "Mom-mom-mom-mom" or "Kell-kell-kell-kell", then she switches to the other hand and syllable, then back and forth.  This is a great eye contact activity for her.

Well, I think that covers the main points!  There's so much more to talk about, believe it or not!  Kellie continues to mature and gets more beautiful every day.  Her hair has the most beautiful natural highlights and her smile lights up the world.  We are continually thankful for her life and all the great things the Lord is doing in her life!

We plan to get some new photos posted really soon.  I'm going to go pick them out now!

Thank you for reading!

Julie

March 21, 2004 - Over 30,000 hits!

Wow, our hit counter just turned 30,000!  We are amazed!  Since we don't know where all the hits come from, we love trying to figure out where so many people find our link!  We don't have this site listed on any search engines!

Kellie fell from her wheelchair last week and busted up her nose.  She is not supposed to get out of her chair alone, but she is able to do it.  For some reason, she tried it in a parking lot while I was unlocking the car.  She tripped somehow and landed smack dab on her nose.  She has little-to-no protective reflexes for falling, so that's why her nose took the hit, rather than her hands.  She also bit her lip really bad from the fall.  When I picked her up, there was blood everywhere!  A fire house was next door, so they came and looked at her.  Once I realized it wasn't an emergency, I called the doctor and we went right in to the office.  The doctor thought everything looked okay.  She got a good look inside Kellie's nose and mouth because Kellie fell asleep during the exam.  We had to watch for head injury, but that appears to all be fine.  We didn't need another one of those after December's tumble down the stairs!  The doctor thought Kellie would be black and blue all over her face for about a month, but it's been a week now and you can barely tell she did anything, thanks to the prayers!  The cartilage in her nose was probably broken, but there's nothing to be done for it.  Since her nose wasn't crooked, it wasn't something that had to be fixed.  She did have a lot of swelling inside and out.  This made it hard for her to eat and drink, and getting strep throat three days later didn't help, either!  She's over that now, too.  What a week!  The previous week she had conjunctivitis and her brother had an ear infection!  We're done with illness for a while!

February 20, 2004 - HAPPY FOURTH BIRTHDAY, KELLIE!

Yes, our precious girl is FOUR today!  WOW!!!  I know everyone probably thinks we've fallen off the face of the earth!  Well, we are still here, and we still read the guest book entries and watch the hit counter!  We've just had an incredibly busy year!  When Kellie was in the NICU, I read many preemie sites; I used to wonder why people stopped updating between three and four years old.  Well, now I know.  I promised I wouldn't do that.  Well, I have.  I apologize.  It's amazing this site still gets about 50 hits a day!  We're almost to 29,000 - WOW!  Thank you!

Last month we did upload 26 new photos to the site!  They are photos of her as the "princess" of the Shriner's parade, working at school, doing the Pledge of Allegiance, being silly, playing in the sand at White Sands National Monument, and her latest portraits.  We hope you enjoy them!  Speaking of the monument, her photo and a short story are on the National Parks Photo Quilt   At this page, search for White Sands National Monument, then click on "Kellie at White Sands".  Just today I found a new online article that features our family!  It was reworked from the article that appeared in Baby Years magazine earlier in the year.  Here is the link:  Twins Today - Preparing for Preemies  I don't know how long it will be there.  She just keeps popping up all over the place!  Last night we were the guests at the Shriner's meeting.  Since Kellie is a patient of Shriner's Hospital, they wanted us to come and show her off!  It was great to be able to say thank you to them for their help!

So, what's new for Kellie?  Well, as reported in March, she started preschool!  She still goes five days a week and rides the wheelchair bus.  She loves it!  She gets picked up first and dropped off last because she doesn't mind it like her two bus mates do!  She loves preschool and is really making some great strides being there.  She doesn't look quite as tiny in class this year!  She's been hovering around 26 lbs and 36 inches, so barely clinging to the growth charts at 3-5%.  However, she is finally wearing age-appropriate clothes - 4T!  She did summer school in June and had fun, too!  She still gets three therapies:  speech, occupational (fine motor), and physical (gross motor).  Plus she gets a lot of therapy and support just being in the classroom.  She started out the year without a paraprofessional (assistant) but by October she had one, so we were glad.  She continues to love music and hums songs perfectly, even after only hearing them a few times.  She is excellent at non-interlocking puzzles and can sort and match colors and shapes, and identify body parts (by patting them).  A really amazing thing she does is write her name!  She will only do it if someone places their hand over hers when she writes.  She just needs some tactile input to do it.  It appears that the adult is writing for her, but we don't, she does it all.  She even uses a capital and then lower-case letters.  We'll have to scan some of her writing and post it!  Her OT is going to try some hand weights on her for input.

Kellie is more beautiful than ever and is really turning into a little girl.  Everyone still wants to call her "Baby Kellie", so they are slowly working themselves into just Kellie!  Jacob stills calls her a baby and probably always will, since she's his baby sister!  She is still struggling with sensory issues.  Her current passions are licking everything in sight...including her shoe soles and wheelchair wheels...YUCK!...and also banging on things with her wrists....OUCH!  We'd love to get her into sensory therapy, but insurance doesn't cover it and we can't pay 100% for it.  So we do the best we can with her.  She still does not have an official diagnosis of autism; it's more just sensory issues related to her "severe to profound" developmental delays.  She has made many improvements with the autistic characteristics, so we trust it will one day all go away.

Kellie had a evaluation at school in December, using the PEP-R (Psycho-Educational Profile Revised).  From the evaluation, she "averages" out to be on a 15-month old level.  Here is the run-down of her assessment:

It is very interesting to see how she is "all over the map" developmentally.  When people ask us where she's at, it's hard to say, really!  She is still non-verbal and has quit doing sign again.  The developmental pediatrician says if she isn't talking by six years old, she never will.  So of course this is one of everyone's major goals, and our biggest prayer petition.  She still does not eat much, and we've given up on that for the time being.  It is just too stressful to try and get her to eat.  She is doing okay on whole milk with instant breakfast added, with some Cheetos or cheese crackers thrown in.  Her pediatrician thinks it is developmental and at some point she'll decide to eat.  Again, if we could afford feeding therapy, we'd do it.  The feeding therapy is a big one, because there are no feeding clinics less than three hours away.

Kellie is just starting to walk with one hand held.  She will do it, but she's not real happy or confident about it.  For awhile in November, she would stand independently.  Once she did it for eight minutes!  After about a week she figured out she didn't want to do it (we were tricking her with a stimulating toy) so she quit.  When she was at Shriner's last March, the orthopedist and therapists thought she'd be walking at (or by...can't remember what they said) age five.  We trust and hope this will come to pass.  She goes to Shriner's again next month, so it will be interesting to see what they say now.

Kellie is very happy and had an amazing 2003 medically!  She did not have one single cent go to her medical insurance deductible!  That is a miracle in itself...since in both 2001 and 2002 she cost us 30% of our one income!! She had the six-month long trouble with chronic ear fluid, but that ended just about the time she was going to get referred to an ear/nose/throat doctor.  The ped figured out it was related to reflux and allergies, so she was on Allegra and Prilosec.  Shriner's paid for her AFO braces, so that saved us about $4,000 since insurance wouldn't pay.  Kellie didn't get off scot free not going to the hospital, though.  She made her first ER trip (and our first with either child) in December after tumbling down my mom's stairs and getting a concussion.  We went to the ER on the busiest night of the year (influenza), at 11 p.m., so she knows how to pick a day and time!  Whew!  She was unconscious most of the time there, which was very beneficial for the CT scan, which was thankfully, clear.  I sat in the tech's room while they did the scan, and that was interesting!

Last month Kellie decided to break another hospital record by being admitted to the hospital for the first time, for illness (vs. scheduled tests), since she came home from the NICU!  That is another miracle!  She was admitted for pneumonia caused by, of all things, the dreaded respiratory syncycial virus (RSV).  With the help of Synagis, a very expensive shot she had her first two winters, she never had RSV those years.  She also avoided it last winter.  We are very thankful it was not until this year she caught RSV.  The illness came on very rapidly.  On a Thursday, she was fine at school, but when she came home, her temperature was over 103.  The next day, she started coughing and still had a high fever over 104.  That night, she started coughing non-stop at 8 p.m.  We weren't sure whether to call the doctor or not, so we waited it out.  Finally at 2 a.m., after she'd coughed every 10 seconds for hours, we called.  The doctor called in a prescription for Xopenex to try with her nebulizer machine (it's been sitting, new in the box, since January 2001).  I went to the 24-hour Walgreens in thick fog, hit two rabbits on the way, got home at 3 a.m. and we gave her a breathing treatment.  It didn't help much.  The doctor had said go to the ER if it didn't help, or come to the office at 8 a.m. if it helped even a little.  Well, since it was so late (early?), and we didn't want to repeat the ER again, we waited.  She went in to the doctor at 9:30 a.m. and was in respiratory distress.  Her heart rate was 195 and her respiratory rate was in the 60's.  Amazingly, her blood oxygen saturation was fair at 92%...it should be above 93%.  They gave her another breathing treatment, which got her sats up to 94%, then they sent us the hospital.  She also had mild dehydration because she'd been vomiting every time she tried to drink her milk since the coughing gagged her.  So off we went to the hospital for a minimum of 23 hours for IV fluids, a chest X-ray, more breathing treatments, and possible oxygen.  Needless to say, we were all exhausted from no sleep.  When they put her IV line in I almost fainted.  Normally that stuff doesn't bother me, but this time it did.  Then an hour later, that line infiltrated and I almost passed out again.  What was neat, though, about that happening, is that Kellie "told" the nurse something was wrong when she came in to check why the IV pump was clogged.  Kellie grabbed her hand and put it on the big swelled up bump on her arm and wouldn't let the nurse take her hand away.  That was very neat to see her communicate like that!  Her X-ray showed pneumonia throughout her lungs, even though by listening to her it sounded like only in the lower right.  They took an RSV swab but knew it would take 24 hours for the results.  It was no big surprise when it was positive.  Kellie's fever was so bad and she was working so hard to breathe, that they gave her a lot of fever reducer.  They gave her Motrin and then two hours later, Tylenol, then two hours later, Motrin, etc., for 24 hours.  Another very neat thing was the answer to prayers we received!  About the time we received her RSV results, our church body was corporately praying for her during service.  Not too long after, she woke up, decided to be a little happy, played some with Daddy, ate some Cheetos, and her fever was GONE!!  We knew she was coming around.  They started weaning her off the IV fluids and by Monday morning, she was eating 50% of her normal intake and was able to go home!  Her ped wanted her out of there before she caught something else!  We saw her neonatologist on the way out of the hospital (we'd seen him coming in two days earlier) and he couldn't believe she was already going home...and with NO oxygen!  She never needed any supplemental O2!  Yay!  Her X-ray showed she still has a lot of scarring from her CLD/chronic lung disease (BPD/Bronchopulmonary dysplasia).  We thought for sure by now her lungs had healed up, but they aren't.  That explains the pneumonia.  Since she's in preschool, and exposed to two sets of children each week, that is most likely where she picked up the virus.  So now we are hopeful something else will not happen!  We ended up continuing breathing treatments for a week for the wheezing cough.

Kellie is due for her IEP (Individualized Education Plan) review, but it's been rescheduled twice, so we're trying again in two weeks.  This will be her special education plan for the next year.  She will be at the preschool for one more year, and will most likely do summer school (ESY - extended school year) since she's so delayed.  Last week I visited her class for the Valentine party and something really neat happened.  She noticed I came into the room, she reached out for me (strapped in her special chair) and then hugged my arm to her chest!  WOW!  She usually doesn't care if I'm (or Daddy or Brother) in the room with her, let alone reach out for us!  She's also starting to cry when I leave her at times.  This is a very big step!  She's starting to obey commands like "put that back", "close the door", etc.  We are praying for lots more progress with her social and communication skills. For now she grunts, growls, and smiles!  She really loves her brother and loves to wrestle with him or beat him on his back while he says, "ahhhh".  That is also a great thing!  We continue to see progress, it's all just very slow.  In the meantime, we've learned a lot of patience and waiting on the Lord!

Thank you for your continued interest in Kellie's life!  Please know we do read your emails and guestbook entries; we just seldom find the time to respond.  I took on a new role this year as homeschooling mom to Jacob, so that keeps me hopping.  It is going well and we are having fun.  Since Kellie is at school four hours a day, we do school when she is there.  She loves to join us for Music, though!  She loves all the songs from Jacob's lessons!  She even started doing a little dance, too!  She'll do it sitting up or standing while leaning on someone.  It is adorable!  She wiggles her hips and shoulders, and twists around, while smiling a great big smile!  Her favorite songs to dance to are the Chicken Dance and Eensy Weensy Spider!

I think I've written enough to get by for awhile!  I hope to post more often.  Please write us anytime!  We love to hear from you!

Praising God for the gift of our precious girl,

Julie