August 8, 2010

She truly is being a little trouble maker. She's defining what it is to be a 7-year-old teenager.

Seriously, it's been a bit rocky. She's not the most stable bug right now. We are having all sorts of high-level meetings to help establish safety protocols for the wonkiness she's springing on us on a regular basis. She's happy as a clam through it all and seems to take great perverse pleasure in making us all jump. I am holding out hope that the hormone therapy we started last Thursday will help us get things back on a more even keel. Unfortunately, this very treatment that offers us hope is known to make things worse before they get better. It's typically 1-2 weeks of increased symptoms before the body kind of figures out the new set of rules. She's also being very crazy with her blood pressures, and that's somewhat concerning. Part of what we are trying to figure out is what is Kira's normal ranges, and what are safe ranges for HER. Not so easy to figure out. So she has all of us, including all of her specialists/attending peds saying "we're a little out of our comfort zone on this". That's ok....Kira's making us all stretch and grow, and that's not a bad thing. So that briefly hits upon the naughtiness she's been pulling. On to the COOL!

Despite Kira's autonomic systems going a bit sideways, she's doing AMAZING in other areas. She's been deliberately using her left hand to play with toys hung from the side of her bed. She's actively using that left hand to explore and feel. She is also a switching fool....we've been playing with her new computer with usb switch interface that allows her to use her head to activate cause and effect switching software. She is clearly deliberately choosing to activate the switch to make the programs entertain her. She's amazing. It's like she knew we needed to see that she is still truly with us and ready to interact with her world despite the physical challenges we are having maintaining her autonomic balance.


August 30, 2009

Although the updates on her website have been scarce since January, events in Kiras life keep happening. I will try to cover the last 6-7 months in this update.

Early in the year, after continuing problems with her swallow, it was obvious that Kira needed to have a tracheotomy. This of course was both terrifying and relieving at the same time. Knowing that Kira could be more comfortable and solving the lung infections was great. Putting another hole in her not so great. On the selfish side, knowing her laugh and grunting noises (both which gave us immense joy over the years!!) were coming to an end, was just too much. But it is all about Kira after all.

The surgery was done Feb. 4th and Kira really got through it with flying colors. Almost immediately, her color was great and she was very comfortable. Michelle has since found great support groups for parents caring for children with trachs. After a while it almost becomes routine.

Kira’s sixth birthday (April 10th) wasn’t really a bash this year but more of a quiet get together. Mepa, Mema, Danielle, and Jeremy piled into our car and road tripped our way 450 miles to Portland for a quick weekend visit.

Kira looked great. All the apprehension about her tracheotomy was gone once you spend just a few minutes with her. Her color looked the best in years. She was alert and smiling. All in all she really looked the best in a long time. She could make faint noises from her trach that sounded very similar to what she used to do. She would convulse in laughter, just with no sound.

Michelle and Ken have done a great job fixing up her new and bigger room. Lots of shelves with tons of medical supplies. Her room looks like a cross between a small hospital room and medical storage room. All of her equipment is towards the head of her bed and out of the way loading her in and out of bed.

A chair and small table are always in the room for the night nurses. She has been getting around the clock care and it really shows.

We all took turns holding her and basically loving all over her. Short visits followed by long quiet times seems to keep her from becoming over stimulated. Just holding her in my arms and having her smiling up at me every time I sung off tune (the way she really likes it), made me feel like the luckiest person in the world.

Our latest Portland trip to see Kira was last weekend, August 21-23. That was the longest time we have not seen Kira and it we were very excited to make the trip. The first evening Kira looked pretty good. A few smiles when she heard her parents voices and a constant grin while receiving a nice head massage. I have to admit that holding Kira is very therapeutic as every problem you have just melts away. I also have to admit that holding Kira for too long will make your arms and legs go numb. She is getting very big!! Around 48 inches and just under 50 pounds. That is 4 feet tall!!

The next day the weather was nice and we have a big walk planned in the afternoon. During our morning visit you could tell that Kira was out of it. But sometimes it takes a while to get going in the morning. During the late afternoon walk, Kira was definitely not doing that great. No color and had a hard time staying awake. We took a few pictures and then wrapped up the walk quickly and put her back into bed. Turns out her blood pressure was quite low. Later that night she was doing much better.

With her seizure meds, she is really loose and really flops around. Even so she would have little shakes now and then. But nothing that would cause her discomfort.

Michelle insists that Kira was off her game during our visit.

Michelle's Note: We discovered in the week after Mema and Mepa’s visit that Kira’s feeding rate was too high. It was making her uncomfortable thus increasing seizure activity. What poor Mema and Mepa got for their visit was a significantly medicated Kira. She looked AWFUL compared to how she “typically” has the last several months.

I had the feeling that as Kira is getting older and bigger in size, added with the routine that it takes to keep her comfortable, she is just getting more distant. Or maybe she just doesn’t respond to all of our silly antics anymore as she is older!!

Mepa

Michelle's Note: Mema and Mepa: no worries….Kira’s lack of response to your silly antics was simply a matter of seizure meds in her system. Days after discovering the feeding rate issue, she’s much more alert and back to being a ham. She’s really enjoying her Baby Einstein and Veggie Tales videos.

What follows is a very recent update from Michelle...........

As many of you know, we’ve been using The Vest to keep her lungs healthy.. A recent xray detected more severe chronic lung damage than we had originally thought she suffered from her chronic aspirations pre-trach. We had also been having more and more episodes of low oxygen levels (desats) with a few rather scary times. Between the xray and the increasing desat episodes, her lung specialist (pulmonologist) ordered what’s called a Cough Assist. This machine uses positive pressure to force the crud in her lungs OUT. The Vest does an amazing job of breaking up the congestion, and the Cough Assist encourages her to get it out of her lungs. This has proven to be an amazing one-two punch. We’ve only had the Cough Assist for 5 days and it’s already made an HUGE difference in her oxygen levels. We are doing breathing treatments 3x a day which is really getting things moving. The result is that we are clearing up her lungs without the use of antibiotics. This is a very big deal as we want to save the “big guns” for when we really need them down the road. We do not want her becoming resistant to broad spectrum antibiotics.

The other area we have been struggling with in the last couple of months is tummy issues. Her feeding issues have gotten very complicated. The biggest thing we have discovered is that she has a unique absorption issue that involves her protein levels and her seizure meds. Essentially she lacks the ability to process the protein properly and the seizure meds need protein to work. If she has to go off her feeding for any reason, we have to reduce the amount of seizure med or it will suppress her system; not a good thing. It’s made for an interesting tight rope. The other “surprise” when we did the upper GI series (xrays) was that her stomach wrap (fundo) has come undone and is allowing her to seriously reflux. Because we are maxed out on meds and she is still having a lot of discomfort from it, we will be repairing that. (Her original one was done Dec. 17, 2004 when she got her G tube placed). She goes in for an open fundo revision on Sept. 24th. The surgeon will re-wrap the top of her stomach to hopefully prevent her from refluxing so much. We anticipate at least a week long stay to recover. Of course that’s totally up to Miss Kira Fae! If it’s only a week, I’ll be pleased!


January 4, 2008

Kira has been living in Portland since the middle of October after her adoption finally happened. Her new location has certainly opened up a whole new medical environment who seemed determined to figure her out.

Still struggling with seizures, bouts of pneumonia, and infections, Kira has been in and out of the Portland hospitals since she arrived.

Mema and Mepa drove over to Portland to spend Thanksgiving with Kira and this was the first time we have seen her since she moved. It was a big relief that she certainly remembered us and just lit up hearing our voices. Holding her and talking to her again made us completely forget about Thanksgiving. Boy is she getting big!!! Sitting on Mema lap it was hard to even see Mema behind her. The few days we spent visiting her were very special days. I added some photos of her during the visit.

As we were leaving Portland on Sunday, Kira unfortunately was headed back to the hospital at the same time. During this most recent hospital visit, they seemed to have a tough time really nailing down some of her gastro problems. From the best they can come up with now, her brain is just sending confusing instructions to her stomach and bowels. Therefore occasionally her plumbing just does not work well together. She was in the hospital about 4 weeks from just after Thanksgiving.

She was back at home for about a week doing pretty good, but then something just was not right with her feeding site and there was blood in her stomach. So back to the hospital to get that looked at. She is in there as I am making this update.

During the holidays Mema and Mepa saw Kira open her present via a webcam which was pretty neat. As she heard our voices her eyes were all over the room trying to hunt us down.


October 4, 2008

Wow. What a summer. Kira continues to throw curve balls every now and then keeping all of us on our toes. Overall her current health is stable. Allergies, especially bad this year, have kept her from spending much time outside walking. But she has snuck out a few times to cruise around town. Usually followed up with a sinus infection. Her seizure control implant is still helping and was adjusted last week. She still gets pretty shaky after too much stimulation or being overly tired. Smiles are a lot more plentiful towards the end of summer rather then the beginning.

As many of you probably have heard, Kira will be moving soon to Portland with her newly adopted parents, Ken and Michelle. Her medical condition should be better served being closer to bigger and more up to date hospitals. Many of the hospitals around here have done about all they can for her.

Mepa


July 4, 2008

Kira eventually climbed out of her recent medical problems and came home after a few weeks in the hospital. Her normal meds that control her seizures are becoming less useful and the large amounts and more powerful ones are effecting her some of her organs. She was approved for a new surgery to implant a device like a pacemaker that is supposed to short circuit her seizures as they start to happen. That should be coming up soon. In the meantime her temp control seems to be hanging in there. The outside temps have been warm so that has been helping. For the past few days at least she has been in a very good mood.

Went on over a two hour walk yesterday around town, shopping, and sitting on a bench at the City Beach. She only stopped smiling long enough to listen to all the kids playing and the birds singing. That was the longest walk we have taken in probably over a year.

Her new wheel chair really seems to help her posture. But when she wants to go sideways it is almost impossible to stop her. Blankets, towels, pillows, and much more has been used in vain attempts to keep her upright. What a kid.

Mepa


May 31, 2008

Stable blood pressure is still being a problem as Kira dropped to 57/22 Thursday night. Had to scramble to put in two more IVs to help the problem. Barely was kept out of ICU. Although with all the nurses, doctors, and equipment in her room now, she practically is. Her blood pressure is swinging all over the place. It might be possible that her seizures has damage her sympathetic nervious system which helps control blood pressure. We all certainly hope this it not the new norm as that we be bad news. Her lungs are still doing great. Yesterday she talked all day and had tons of smiles. A lot of myoclonic (shaking limbs) seizures also. They have not even set a date for trying to leave. Could be sometime.


May 29, 2008

Kira, true to form, has apparently turned the corner and is doing better. A new Xray of her chest has shown the pneumonia has cleared. They are still trying to control her seizures but are making headway. Lots more smiles which is a good sign. At this point they are just making sure she really is improving and won't slide backwards as soon as she is home.


May 27, 2008

Kiras big comeback has hit a snag in the road. About a week ago Sunday, Michelle could tell that Kira was a little puny and not quite right. The next day she was worse and by Tuesday morning she was in having a chest Xray. One look at the Xray and off to Sacred Heart she went with double pneumonia. Once on intravenous antibiotics, breathing treatments, etc., her lung condition seemed to improve. But anytime Kira has a major illness like this, her seizures just start right up and she is very uncomfortable. So the longer she was ill, the more intense the seizures became. On Friday (23rd) they did a lung culture and decided to change antibiotics to clear up the remaining lung infection. That move is helping her improve in the lungs even more.

Last weekend (Memorial Day weekend) her blood pressure started to drop along with her temperature. Controlling her seizures without suppressing her respiratory system, already barely working, is a real challenge. Also during the weekend they moved her into a bigger room.

Last night they increased her seizure meds so she could get comfortable and get some rest. If that does not do the trick they will have to move her to ICU and put her into a controlled sleep. If her breathing is labor she might have to be intubated.

Report this morning is the increased meds last night are helping and she have a reasonably comfortable night.

This is a very scary time for all of us but be assured that Kira is being very well cared for by Michelle and Ken. I would pin a medal on them but the added weight would probably just tip them over from exhaustion.

Mepa


May 17, 2008

Kira is back!!! After taking about a year off, the old Kira that we all remember is back with a vengeance. Obnoxious, attentive, smiling, talking, laughing, cracking herself up, etc. What a relief. I was so concerned that Kira might have changed for good. She continues to be quite a mystery.

We have just started our walks after being house bound all winter. Managed to get in four walks the last week or so. The entire walk she is happy and smiling. She even gets cranky after being inside a store for too long. Once outside, all smiles. What a butt!!

Yesterday she did something on a walk she has never done to me before. While rolling along she sticks out her left leg straight in front of her. I say “Are you trying to kick me?” and she would smile big time. This would go on and on. Eventually she should stick her leg out and roll her eyes waiting for the response, “Whose trying to kick me?!!”, all smiles. Probably went on for about 20 minutes until she got sidetracked and her mind went somewhere else.

Her temperature seems to be holding its own. The outside temp is helping for sure. But she actually seems to be holding her own better.

Will be modifying her day bed soon so her new lift can roll under the bed to help lift her. As she continues to grow in both length and girth, something has to be done or their will be a lot of strained backs out.

What a joy she is in our lives. We are so lucky to have her!!

Mepa


February 22, 2008

Well, I am happy to report that there's not too much to report! Kira has had a relatively quiet winter, and believe me, this is wonderful news! We have been completely housebound as Kira temperature has proven to be very tricky. When she is healthy, it's nothing for her to fluxuate between 99.5 and 95.5 degrees....sometimes hitting both ends of the spectrum within an hour! Because of this, therapy has been a lot more challanging. We have had to insist that her therapists work with her in her in bed, on her MediTherm unit to help maintain her temp. Apperently she has found a very unique way to protest exercise! Her typical drop after excercise is 95.3 degrees. Aside from the temperature difficulties, she has been really very healthy for Kira. We had a minor pneumonia that we were able to treat easily at home, and and she actually had her first cold....yes, a simple, normal cold! We were thrilled that she kept it from going to anything more serious...way to go girl! Her seizures have been a little tricky to control, but overall, she is weathering them like a trooper. We just discovered one of the main causes for increased seizures yesterday. Her visiting dietician has been coming to the house to weigh our little princess. In this case, I am so very glad she has been, because she would have never believed me! On the 11th of Feb., Kira weighed 36 lbs, 4 oz. Just 10 days later on the 21st, she weighed in a hefty 41 lbs, 10 1/2 oz!!!!! Our dear "little" Kira is indeed getting BIG! We have reduced the overall caloric intake of formula, and have added protein in the form of baby food to help make up the protein shortfall.

I can't forget the most exciting news....Kira has a new wheelchair! It's amazing and fits her so well. It's custom fit to support her from "top to bottom" and helps correct her scholiosis. Mepa can't wait to take it out for a test run! I spoke to Dr. Gilbert today about what the outside temp needed to be for us to attempt walks again....are you ready Mepa??? She said as soon as it's sunny and in the 50's, we can bundle her up and give it a go! Kira will have the final say, of course...but as long as she doesn't drop too far, then she's back to walkin!

Michelle


Decmeber 1, 2007

Kira is pretty much house bound for the winter. Her temperature continues to drop anytime external heat is not applied to her. Going outside for any reason, no matter how high the blankets are piled, causes her temp to start downward. Therefore her outside walks with Mepa have been put on hold until the outside temp is more favorable.

Good news on the digestion front. Her Gastric Empty Rate is breaking new personal records! Around a year and a half ago, her rate was 292 (minutes for stomach to empty). Normal for her age is anywhere from 30-60. Her latest test a week ago clocked her at 63. That is great news for a couple of reasons. It not only makes her more confortable overall, but also allows some actual food to be given via her G-tube. Maybe there is even a chance in the future of her getting some food orally. Everyone keep their fingers crossed!

The other day I was reading her a book and she really made me laugh. With her back laying on my chest, my line of sight was looking down her face from the top of her head. Out of no where, a small fleshy snake started rising from her face like a snake charmer. It seemed like it would never end!! I really had to stare for a minute before I figured out it was her tongue sticking straight up in the air. Well I had to start to chuckle which made her give a big grin. I don’t think I will ever forget it.

Mepa


September 20, 2007

Well it has been a long and interesting summer with Kira. For the most part, she is doing pretty good.

A new (bigger in size) feeding tube was installed. After about a week of stomach problems an xray showed that the tube was not in the proper position. Another surgery was required to fix it. And really ever since then it has been a struggle to get her diet back on track. Kira is meeting with a pediatric gastro doctor today to see what is up. She is down to 32 pounds which is not great.

An MRI of her head was taken and compared to her younger years. Most of the brain material that was there before is still there with some increase in size. It also appeared the maybe some additional connections were being made between the parts that are there.

Heating and cooling is still a problem. Mostly heating. A new small sleeping bag that fits her wheelchair good will help with the trips around town as the weather gets colder.

Her first normal flu bug ended up with pneumonia. Not as a severe case as before and managed to stay out of the hospital.

Kira did managed to get all dressed up and be the flower girl at her Aunt’s wedding. Seeing her come around the corner and down the isle in that beautiful dress must have been quite a sight. I missed it of course as I was following behind her with the bride!!

With any luck, Kira will get on the mend and be able to get outside and have more better days. She is comfortable, still has some smiles, but just seems really worn down with little reserves left.

Mepa


July 6, 2007

Wow, there have been a lot of changes since the last update. My apologies to everyone for the delay in getting this out. As a result, this one is a bit long. We are indeed home again. Kira's seizures are responding very well to her new Ketogenic diet; we are down from 5 meds to 2, and those are greatly reduced. One of the unfortunate results of her seizures getting so severe is that she is no longer controlling her body temp. Since our return, we have made some significant changes to our routine. Due to Kira's unpredictable temp. control, we now have aides coming in to monitor her thru the night. She has shown a remarkable ability to drop 5 degrees in 15 minutes. This means changes in other areas as well. Since she can also rocket the other direction and get too hot, Mepa has had to add ice packs to his walk and roll inventory. If it gets too much warmer, we may have to hold off on walks until later in the evening. Kira continues to LOVE her walk and rolls, as Daddy calls them. It has also made the most routine trips to the doctor a bit of a logistical challenge, but we are figuring it out.
We are using a hyper/hypothermic system called a MediTherm 3. It is a water filled mat she lays on that has water lines that feed either heated or cooled water to adjust her body temp to keep her within acceptable temperatures. We use that in combination with an electric blanket that adjusts to 20. For day trips, we are using a heated throw that was a gift from Mema to her Dad. We have used that both in the van (with a converter) and in the doctor's office when her temp has dropped below 97.5. It has been a real blessing to have and takes a lot of the worry out of trips to Spokane.
We have also added oxygen at night, only when needed. She drops below 85 percent on occasion, so we just supplement her with 1 liter per minute to keep her numbers up. Over all, she has been in good health since our return from the hospital. She has had a serious sinus infection that was being a bit stubborn, but we are getting on top of it, and will be extending her antibiotics another 10 days to make sure we have it totally cleared up. She has also gotten over a nasty ear infection. Amazingly, with all this going on, she is still a happy-go-lucky little girl. Ken recently put her Veggie Tales CD in that Richard had customized to sing her name….each time they sang her name she just BEEMED…she certainly knows her own name and likes to be sung to!
Ken and I recently traveled to Boise for a seminar on assessing and developing communication systems for children with profound and multiple disabilities. It was beyond amazing! The entire first day of the 2 day seminar was on the 4 levels of pre-symbolic communication. Had you asked me before the start of the seminar where Kira was, I would have told you a level 1; however, I learned differently. She is very firmly a level 2 with some areas being level 3. Basically what this means is that she has a lot to work with. They showed kids who were more profoundly disabled than Kira that were able to learn creative ways to communicate…in short, it was mind boggling! I am very excited to start working with her speech therapist here. I am ordering the actual materials that the seminar was based on to share with everyone who interacts with Kira. The speakers over-riding message was to give these kids a voice…give them a means to get someone's attention. I will keep you all posted as we get going in this process.
Kira's newest trick (well, not new, but newly applied) is her pout. She has always been a good pouter, but just in the last 2 days, she has shown new ability to use it to let us know how she feels about something. Yesterday, I put her down for a nap, and instead of throwing a fit and screaming, I heard a strange little whimper from her room…she sounded like a puppy dog! I went to check on her, and she had that lip and chin working. I asker her if she was mad because she was in her room, and she started going for the full face pout with quivering lips! Frankly, it was so very funny I had to leave for a moment to laugh before I got her up! This morning, she did the very same thing, but in a slightly different way. Ken saw that she was awake, so he rolled her over to her back…the same thing he does every morning when getting her up. As soon as he did, she pouted! So he asked her she wasn't ready to get up yet, and rolled her back on her side. She smiled and went back to sleep! To say that we are blown away would be an understatement! And for her to be doing this now, so soon from returning from the communication seminar, is so encouraging!
This last Friday we took her in for her botox injections and she handled it like a trooper, and then on Monday, we went in to replace her feeding tube. The other one was still functional, but really gross. The replacement was considered maintenance, not an emergency. Kira's temp. and oxygen issues have made even the most routine procedures not so routine…frankly she scared the nurses a bit. She did fine, but because of her instabilities, they are now asking that we have an anesthesiologist on hand for any future procedures. The only real change that will mean is the ability to give her pain meds during the procedure so she is more comfortable. Even though the tube replacement didn't go totally as the radiologist planned, she did really well. It just took longer than they thought it would.
Well, I think that's about it for now…thanks for keeping up with our precious little angel!
Michelle


May 12, 2007

Kira was released from the hospital last Monday (7th). Her lung infection is gone but we are still being careful being around groups of people. She is adjusting to the new diet well and her energy and alertness is much improved. She was very talkative during our walk yesterday and she spent quite a while telling me about the whole ordeal. Her temp control is still out of whack but hopefully will settle down soon. She lost a total of six pounds in the hospital but it back where she probably should be anyway. I am not sure what seizure meds she is on now or at what levels. Now that she is out and about more, I will get some recent (non-hospital) pictures of her for her website.


April 30, 2007

Kira Fae is a very sick little girl at this moment. She went into the local hospital 4/27 after an X-ray confirmed that she had “double aspirated pneumonia”. Together with ramping up her seizure medicine and being on antibiotics, her poor body is really confused with multiple problems. Although she has been making very small improvements each day, this morning it was decided to move her to Sacred Heart Medical Center in Spokane , Washington to be closer to the specialists that have been working with her.

Her seizure activity is getting more profound all the time and we are struggling to keep it under control. While in Sacred Heart, they may have to put Kira in a coma to give her body some relief from the seizures and hopefully help the healing process.

There are also some new diet techniques they are going to try at the same time.


April 14, 2007

Kira’s Birthday party last Saturday was too much fun. Unfortunately Kira was just coming off a bad day which made her not quite all there and she never really got into it. We had a Hawaiian Luau theme with lots of food and great weather. Thanks to everyone that showed up and helped out.

By the next day she was definitely up for her walk and in a much better mood. And by Tuesday she was talking, laughing, and smiling non-stop.

It is great to have glimpses of our old Kira (laughing & smiling) now and then as she adjusts to her new seizure medication. It is quite a long process (6 months) that is difficult not only on Kira but to everyone involved with her life. But Kira has proven that she is one tough kid and this will all be behind us soon.

If anyone wants a copy of her latest videos, please ask.

Mepa


January 24, 2007

Well, what to say except WHEW!

It has been a very busy several months. Kira has recovered remarkably well from her hip surgery. She was doing well enough that Mom and Dad felt comfortable enough to go on the much anticipated vacation....without Kira! Mama D stayed with Kira.....I think Danielle is still catching up on sleep! We followed up with Shriners and found that we will not have to do a second "surgery" to remove the pins in her legs....they are not bothering her at this point. It is possible we will have to deal with it later, but for now we are in the clear. She is much more comfortable now and is back into her walking routine. During that same follow up with Shriners, it was determined that it was time to try bracing to try and give her more support sitting. After several appointments which included a casting (Kira was NOT impressed!) we now are in possession of a semi-rigid torso brace. Kira says it can go back to where it came from, but Mom and Dad say NO WAY! We are still working on getting Kira used to it, but it is already making a huge difference in her posture....she actually sits up straight for extended lengths of time. She is much easier to pick up and hold since we aren't having to fight "The Bendy Baby". In fact, it has helped us reach some pretty impressive goals. Kira had an AT Assessment....(Assistive Technology) yesterday that went better than great. She basically blew us all away. The therapist that was leading the team was very impressed with her responsiveness. In fact, she repeatedly used a switch to activate a toy Penguin she really liked....and this was her first attempt at switching. Switches come in many shapes and sizes, but the one Kira tried was a circular button about 3 inches around. By pressing this button, she made the Penguin dance and make obnoxious noises....guess we are going to have to get one of those! It may not seem like much now, but we have always hoped that she would be capable of switching because of how life changing it can be. Switching opens doors for Kira that boggle the mind. From choosing what to play with, what to watch on TV, controlling a power wheel chair, and even using a computer using a computer interface module that turns the computer into a switch. There is a ton of software geared for kids like Kira. I have only touched on a few of the potential benefits for her....basically, it gives her the ability to choose..... something she has precious little of up to now. Of course like everything else, Kira will show us just what she is capable of doing. It will take quite some time and LOTS of practice for Kira to master some of these things, but based on what she showed us yesterday, it no longer just a pipe dream of her parents....she really could have the cognitive ability to figure it out.

The other area that we are just thrilled about is Kira's swallow. She is now handling baby food almost daily. We are still on Stage 1 and 2, but she is handling these like a pro! She LOVES fruit medley, We go through lots of baby food ....any coupon clippers out there??? I now have a 1 year goal for Kira....that she be able to eat 3 meals a day and just supplement her tube feedings for calories/nutrition/fluids at night. I have wanted to do this ever since we had to put the feeding tube in, but this is the first time that between myself and her therapists we feed that is actually a realistic goal.

Kira took her first true road trip in December. Mom and Dad had a moment of insanity and decided to take her to southern Oregon to meet Ken's family for the first time. Overall Kira did great...actually Kira did great, Mom and Dad had some adjustments to make to the "Slumber Party" nightly.....lots of party and not much slumber on Kira's part. She really got a kick out of sharing a bedroom for 10 days! Of course, her main objective was accomplished while down there....lots of present's, spoiling, and an expanded fan club base! She even managed to rope both Grandma Nancy and Great Grandma Anderson into crocheting special blankets just for her! Every lost wink of sleep was worth it though...if the last couple of months have taught us anything, it is to value and cherish the time with loved ones. I can't say how happy I am that Ken's family got to see for themselves just how special and precious our Kira Fae is.

Michelle


October 31, 2006
Cast finally came off a few days early (Oct 2) and Kira is well on her way to a full recovery. Right afterwards Kira was very sensitive being moved around and it was tough having to re-position her. Her bottom lip would curl up and she would start shaking all over. Wait a minute, that was Mepa. Eventually a bunch of bolts and pins will have to come out. But it doesn't sound like that will be too bad. Muscle spasms are still a problem but getting better. Meds have been reduced a lot and she is getting back to her normal self.

On Halloween this year Kira was dressed up as a lepoard and went trick or treating for about 2 hours with temps in the 20's. Kira stayed pretty warm but the pusher (Mepa) was somewhat frozen. He wouldn't have missed it for the world. Her trip included stops at Super Drug, Neimans, Hallmark, North Idaho Spine Clinic, Dream Time, and Grandma Judys. When Kira was finally tucked in on her nice warm couch, she spent probably the next hour talking very loudly all about it. I am sure she will remember this day as long as I will.
Thanks to Michelle for letting me take her out.

Mepa


September 19, 2006
Cast is scheduled to come off Oct 5. Which is coming up fast. Kira is hanging in there. She is certainly an uncomfortable camper. Who knows what the heck she must be thinking during all this. Have took her out for a few walks. She is usually alway calm during the walks and likes to get outside. Even gives a chance to air out her cast. Some smiles every now and then. She is on pretty heavy meds so isn't quite herself. We are all anxious to get her back to normal again.


HOSPITAL UPDATES

9/06 - Michelle called last night and said Kira has turned a major corner and is doing much better then expected. She even plans on coming home today!! What a shock. It will be great to have her back in town again for drive-by huggings and kissings.
9/05 - Kira is making good progress every day. She has always taken her own sweet time for recovery. Which is fine by us. End of last week her epidural came out. This weekend her catheder. She is still on heavy meds to control her pain and discomfort. Her feeding must be up to about 50 before she can come home. Last Friday it was at 7, last night 30. Slight bladder infection, antibiotics helping. I would guess she has at least another week in the hospital. Lifting her is no longer a one person event. Her cast added another 15-20 lbs of weight is some awkward places. In between cramping and trying to figure out what the heck happened to her, she offers smiles to help boost our spirits and let us know she's still in there. Michelle, Ken, and Danielle have been doing a tremendous job taking care of Kiras every need. We will always be in debt to them for how they take care of our little Kira Fae.
8/31 10:00 AM - Took a while to get ahead of her pain meds yesterday, but by evening she was comfortable. Still looking at 12-14 day stay. This morning she is doing better, less crying and more fussing. Ken and Michelle seem in good spirts.
8/30 7:00 AM - The operation went fine yesterday with the doctors fixing a few other things while they were in there. Kira is resting comfortably and even had some smiles last night when Mema visited. So far so good. I will add more info once I get a chance to talk to Michelle in detail.


July 20, 2006
During a recent trip to the Shriners, we now know why Kira is so floppy and has such a hard time sitting and standing. During her early development, her hips never really connected properly. So now her hip balls on resting on top of her hip bone rather than in their sockets. It is probably one of the many forms of human hip dysplasia.

Kira is scheduled for an operation on Aug 29 to reconnect her hips. She will be in the hospital for at least a couple of weeks and in a cast for about a month.

Her feeding tube has also been relocated and her feeding routine modified to help her slow digestion. Basically taking longer (about an hour) to feed her meals instead of just all at once.

Now that the lake is warm and the weather hot, Kira has been seen dipping in the water at the local city beach. I even had her in water 2-3 feet deep for about 30-40 minutes. She was laughing and smiling the entire time.

Her hip problem is causing some of her walks to be cut short. Although sometimes she is fine and never complains. When she does start to have problems during a walk that cannot be corrected, it is an all out sprint for home. Must be quite a sight seeing us fly through the neighborhood.

Mepa


May 28, 2006
Kiras third birthday party was a great success with a great time had by all. Kira got the usually too much stuff but that is what birthdays are for. Her newest hair style had her looking every bit a three year old and then some. If anyone wants a copy of her 2-3 year video, please email her. A bunch of DVDs have already been sent out but if you were missed we apologize.

Kira has been hooked up with an awesome new bed. It is basically a full size hospital bed complete with electric adjustments for head/feet/height. This will not only make her more comfortable but much easier to care for are she can be lifted from a safe height. Memory foam bottom, sheepskin sides, assortment of hanging mobiles, sound system, light box, Michelle (Mom) has really done a great job making a wonderful arrangement for her but at the same time not spoiling her. Yeah right.

Walks around town are at a fever pitch as we all have our regular routes and times we take her out. Probably a few dozen times now Kira has lifted her left hand up to where I hold her wheel chair and grabbed onto my finger. At which point I always say back to her “Whose got my finger!!”. This usually gives her a big smile or happy laugh. I thought I was just imagining this until Kira did the same thing to Mema.

In her wheelchair, Kira does seem to be getting more bent off to the side. Requiring rolled up blankets on her sides to keep her somewhat upright. Even this doesn’t always work and her head sticks sideways out of the wheel chair. Smiling the whole time of course. It must be quite a sight. Kira goes to Shriners for the first time June 2nd. It is very possible that she will require bracing to help stabilize her trunk.

A couple of weeks ago Kira went to the local amusement park, Silverwood, and had quite a time. She had a chance to ride on the Country Drive (small gas powered cars going around a track) with Mema, the Log Ride (a plastic log boat floating down a water course) with Mom, and the Kiddie Roller Coaster with Mom. Dad and Mepa were manning the cameras and camcorders. Grandma Judy and Elizabeth rounded out the group. She was a perfect girl the whole time and was all smiles and yells during her rides. The Log Ride was certainly her favorite. It was too much fun being part of it. Thanks to Mom and Dad for the invite!!

Still having some occasionally bouts with teething. Overall she is doing great health wise and generally a very happy kid.

Mepa


March 22, 2006
Spring has SPRUNG!! And that means that the snorts, yells, screams, and laughs are again being heard all over Sandpoint as Kira is finally making her walks around town after a long winter. Drivers beware (and some pedestrians!!) as Kira zigzags on her favorite streets, sidewalks, and walking paths. It is certainly the highpoint of Mepa’s day when the sun is out and Kira is strapped in and ready for a walk. Many of the shopkeepers look out, smile, and wave when they see that Kira is back in action. Since last fall she seems to be more bent to her left and seems to favor dropping down that direction. A strategically placed rolled up blanket usually keeps her somewhat up-right. After Mepa broke her umbrella last year, he needs to come up with a better solution to affix something to her chair.

Lots of other stuff is going on in Kira’s life as she quickly moves towards her THIRD birthday (April 10, HOLY COW!!). A new Snug Seat will be used soon in place of her automobile baby seat. Better posture control and easier to load and unload. A new hospital bed is in the works to replace her current bed and foam wedges.

Kira is increasing her speech therapy at the local hospital. As she is becoming more vocal, maybe some of the sounds can be used for basic communication. A recent checkup showed went fine with Kira being at the 50% on both the height and weight charts.

There are concerns about scoliosis which may mean a brace to help her posture. Getting signed up with the Shiners system will help any orthopedic therapy, braces, or gulp...., surgeries.

As Kira turns three years old many of the groups that have been involved with her will have to change. Groups that deal with older kids will now have to take over. One of the groups recently asked what they could do to help with Kira. Our best response was “What do you got?”. In other words, bring everything!!


January 17, 2006
Kira did the most amazing thing last week. She was following and trying to focus on things in front of her face. The only thing odd about this is that her eyes go CROSS-EYED!!! I will try to get some photos of this because you really have to see it to believe it.

Recent round of Botox has her loose and feeling good. Teeth are still a problem but overall she is in good health.


December 4, 2005
Kira continues to grow into a little girl. When having no discomfort, she is often happy to sit listening to music or being held. Getting her around town in her van using the new wheelchair lift is very routine now. She seems very content to be strapped in and hauled around town. I have noticed how she really likes to be in areas that have a lot of noise. While walking in the Bonner Mall last week she loved the sounds of the PA system announcing BINGO. The very cold weather has put a dent in our regular walks but hopefully warm weather (something in the 30's) would be a big relief.
--Mepa


October 11, 2005
Another round of Botox injections last week has started to loosen Kira up again. Just before the injection she could have passed as a Boogie Board. The most often Kira can have this treatment is every three months. We are hoping that after a few treatments her stiffness will not get too bad between treatments. After applying a topical numbing cream she is wrapped in saran wrap. Kind of like a big roll of cookie dough getting ready to go into the fridge. Once she is numbed up, about 20 injections are made at the most critical joints. Although she isn’t too happy during the process (mostly due to having to stay still!!), a quick nap usually follows, then she is in a great mood. After a few days the soreness of the injections wears off and she is free to move about all she wants. Her head position during walks goes from up and to the left before the treatment, to looking around very comfortably after.

A big adventure awaits Kira in just a few days!! On October 13 she and her entourage (Michelle, Misty) and 5 lbs of Chocolate Chip Cookies will be heading to the Achieve Center located in Wanachee, Washington State. This clinic will be studing her swallowing difficulties and hopefully be able to offer some help. She will be gone for 4 days. :(
--Mepa


September 5, 2005
The recent Botox injections have shown VAST improvements in both head and trunk control. Her independent sitting time has increased also. One of her activities which has benefited is the horse therapy. She just isn’t tolerating it anymore, but is actually enjoying her time on the horse. Bouncing and thrashing about with a big smile. Unless she is teething, she is overall a much happier and more content young girl.

Teething – When will it ever end......And please don’t remind me these are only baby teeth. The thought of her losing these and getting another set is more than I can take now!! She is getting first and second year molars plus eye teeth all at once. This has made for one cranky, miserable girl. Meredith (occupational therapist) did some cranial work on her today and boy what a difference. Kira was actually up for her walk with Mepa this afternoon. Meredith found several bones in Kira’s mouth that were “shifted”, or out of place. Making it very difficult for her teeth to come in. She was able to re-align the bones which explains the improvement in Kira’s mood.

Kira also has a few new playmates. Sharing her house now is both a 14 month old and 3-1/2 year old boy. She loves to watch and listen as the play energetically around her.
--- Mom

Even though Kira’s walks around town are getting more routine, most of the time she lets out her happy yell as she is being strapped in the her wheelchair. It still amazes me that she can anticipate what is going to happen and can remain content for an entire two hour walk. When the temperature was in the 90s we grabbed her swimsuit and would sit in the lake for about 30 minutes while on her walk. She also has the most amazing tan. But only on one side!!! Quite a few people recognize us walking around town now as we take the same route at about the same time.
--- Mepa


July 11, 2005
Kira has recently had tubes inserted in both ears to help ventilate the middle ear. This should help with both pressure and drainage problems she has been having. So far it seems to be making her a happier girl. Sleeping is still a problem. She has perfected short power naps which leaves her Mom and Dad without much needed sleep.

I have noticed that she is kicking her legs more when we go for walks. Usually the blanket that I lay over her stays put. But now, her right leg especially, kicks in and out so much that the blanket is often close to being kicked off. Content for an entire two hour walk (5 miles) is great, but I think that is about my limit. I am not sure how much further she can go.

Her first haircut involved trimming her bangs. The rest of her hair is kept long to help put it up in a pony tail. She has also gone from not liking to have the top of her head touched to really enjoying it, almost going into a trance as she coos, giggles, and smiles while her head is being stroked and rubbed.

The horse therapy is continuing and has showed improvement in both her head and trunk control. She is getting more comfortable on the horse we are confident that over time her improvement will continue.

Her current statistics are 30 lbs and 36 inches. So not much weight gain, but getting longer every month. She is getting about 500 calories a day via her stomach tube. Oral feeding is slowly being introduced again. Fruits, baby food and of course her favorites, beef jerky and goldfish crackers.

To help control Kiras spastic muscle movements, 18 injections of Botox were given to paralyze specific nerve endings. By reducing her involuntary contraction of muscles, it will give her a better chance to control them on her own. It also helps her care givers by making her easier to dress, diaper changes, putting in car seat, etc. She is on a three month schedule for these injections.


April 19, 2005
What a busy month it has been! Kira turned a big 2 years old on April 10th. Everyone celebrated in grand style with 2 birthday parties; one on Saturday, and one on Sunday. Thanks to everyones generosity (no, I didn't say spoiling"), Kira is definitely the best dressed, best entertained kid in town! Daddy wants to know if we are having 3 parties next year since she had 2 for her 2 year birthday! We recently had a MRI and hearing test done at the hospital. Both required sedation...boy was THAT fun! The hearing test was actually quite fascinating to watch...they attached electrodes to Kira's head that measured the brain's reaction to each sound that came through the giant headphones on her ears. The brain waves were recorded and sent to her ENT doctor who was able to compare Kira's "map" to what a normal brain's response would be. The results were incredible....Kira shows no hearing loss in either ear down to 30 decibels! This came as quite a shock to all of us! Between her normal hearing and her new glasses, Kira is learning to take in a whole new world around her. Lately this has been very evident in a whole new round on startling badly. This is actually good news though. As her occupational therapist explains it, Kira is like a newborn that has developed to the infant phase where they suddenly become more aware of their surroundings. Kira's improving hearing and eyesight coupled with her developmental growth is allowing a lot more information in for her to process. Right now that is a little scary for Kira, but she will adjust over time and be better able to handle all of the input and stimulus. Just in the last 2 days, she has shown a significant step forward in moving her left arm straight up to hit her mobile. This is much different than her using her reflexes to swing at toys moving her arms across her body. Meredith (her OT) says that is the natural progression of purposeful movement and puts her at the 3-4 month old developmental mark. Kira is also wearing what are called AFO's at night. These are soft brace-like "boots" as Taci calls them. They are a gentle, non-invasive way to get her muscles and ligaments to stretch and grow in a way that will allow her to walk. Left untreated, Kira's feet would continue to grow and atrophy inward. Now that Kira is 2, we will be starting hippotherapy which is using horses. Traci Schmidt is Kira's physical therapist and owner of Kids in Motion Hippotherapy. She provided a great description of just what hippotherapy entails. All of her therapist expect to see huge improvements as a result of adding hippotherapy to Kira's therapy regime. For more information on Hippotherapy click here.

Janeen reports that while watching a new DVD, Kira perfectly mimicked a musical instrument....so much so that Janeen had to look twice to make sure she heard correctly! Still number one in Kira's book are walks. This girl loves the outdoors. Mema and Mepa have been getting lots of exercise taking Kira downtown and to the beach. Kira especially likes the seagulls! Yesterday was Kira's first swing in the park. We walked to a nearby park to try out the swings. Kira loved it, but Mom found it very tiring to keep her supported without falling out. Kira's occupational therapist, Meredith is going to meet us at the park in the coming weeks to see if there is a way to modify things so that Kira can swing with the other kids. High on Mom and Dad's list of things to get done this spring is to find a swing set that we can switch the commercially available swings with one that will allow Kira to swing on her own safely.

Now on to Kira's health....she is doing great! She recently decided that no one should turn 2 without having at least one ear infection, so she fixed that in grand style. She ended up with 2 ear infections that forced us to reschedule the hearing test. Along with the 2 ear infections, Kira had a nasty looking throat and horrible cold. It was quite a miserable week for all, but she finely got over it and is doing well now. Her latest challenge has been her teeth. As usual, Kira is an over-achiever. She has a total of 6 coming in. Four are just starting to poke through the gums ( 2 of these are the eye teeth), and her 2 left molars have finally started to come in. There's no tooth in sight, but the gums sure are swollen! We have had some pretty cranky days (and sleepless nights) due to all of this teething...her poor mouth looks like a construction zone! Overall though, Kira is handling it like a trooper! Her feeding continues to go very well. Kira now has a "corporate sponsor" in the form of Thorne Research. They are a local company that makes incredible nutritional supplements. It gives us additional peace of mind knowing that all of her nutritional needs are being met above and beyond what her formula provides. The owner's of the company are also researching what additional supplements may be beneficial to Kira to meet her unique nutritional and developmental needs. Kira's world of food has really opened up in the last couple of weeks. She is now enjoying beef/turkey jerky, Pink Lady apples (other varieties to come), pretzels, and rice cakes. Kira has shown us a real willingness to try new things. Of course, the old standby is dum-dum suckers with sour apple being her favorite! We also had a trip to the dentist to smooth out the incredibly sharp points on Kira's bottom front teeth and molars. This has made a huge difference in cutting down on her biting her lips and cheeks.


March 3, 2005
Kira is getting to be quite the girl around town. She loves going on long walks in her wheel chair. Each time a car goes by, she lets out a happy yell. The louder the car, the louder the yell. It is very entertaining. With warmer weather approaching, taking her for walks around town will be a normal occurance. It is amazing how many people we run into who are excited to see her. Everyone is surprised how old and big she is getting.

Feeding is getting easier as her Mom can whip up some grub in no time. For anyone who wants to see the process, click here.


Febuary 6, 2005
Kira had her first visit to the dentist. She was a perfect patient and the dentist thought everything, from her gums and enamel, looked great. Her main reason for going was a concern about her jaw movement. Again the dentist felt that it looked ok. He also added that he felt there would be enough room for all of Kira's teeth she's been working so hard to get in! Michelle didn't appreciate the reminder that Kira still had a whole second set of molars to work on once she was done with these!

The new feeding routine has changed a few times. Getting the balance between length of feeding and amounts is the key. The formula has been adjusted also. She is able to go “cordless” now. Cordless means not plugged into her feeding machine. This makes therapy and playing with her much easier. Feb. 3rd and 4th brought back to back trips to Spokane. The first earned Kira a clean bill of health in her follow-up with her surgeon, Dr. McCarthy. We are watching Kira's waisteline carefully as her "button" is already too tight and we can't change it for another 6 weeks! Our second trip was for a follow-up rehab swallow study. Basically this is a x-ray test that allows us to watch where the food goes once Kira swallows. We were able to see her handle a half cc of honey thick applesauce, but then gag on 1 cc. Her gagging during the test was actually a really good thing...it allowed us to see that her gag reflex is lightning fast, that she is protecting her airway perfectly, and that the food continued to go where it was supposed to. All of this means that she can now start eating recreationally. We can dip a spoon into her favorite foods and let her taste things again. The therapist believes that it is only a matter of time and practice for Kira to learn how to handle larger amounts.

Her hearing seems to be her primary means of sensory input. She still loves all kinds of music and sound effects. But also likes to stare at changing colors and light patterns.

Overall health is good. Her blue eyes turned hazel. Everyone who works with Kira has commented on how good she looks since getting the feeding tube put in. Mom and Dad report that her she is happier, calmer and sleeping better (for the most part!). Thursday, she actually got herself from her back, to her side and back again! As always, she continues to amaze everyone. What a miracle baby she is!


December 22, 2004
Kira is continuing to recover from her recent surgery. With no complications and staying ahead of the pain meds, she is one happy girl. Smiles are abundant and even a few shouting loud laughs when the toilet in her room flushes. Yes you read that correctly. As of last night she was up to 15ml of food intake with a final goal of 50ml before she can go home. They are adjusting up about 5ml every six hours if she can take it. Ken and Michelle are holding up well to the daily routine. Although anxious to get back home, they do not want to rush things and have to race back with a complication. With Ken and Michelles constant attention, and Mema and Danielle helping out, Kira is in very good hands.

We also have found out that the G-tube can double as a burbing (they call it venting) device. Just pluggo whamo and out goes the air. No more painful tummy gas!!


December 17, 2004
Kiras surgery went perfect this morning and she is doing great so far.
She went into the hospital about 6:30AM sleepy and hungry. She received some sleeping stuff through her temporary G-tube around 8:00AM. Once she relaxed she gave big smiles to everyone, a few big yawns, and fifteen minutes later she was out. I think the big smiles were her way of letting us know that she would be just fine. After a final round of hugs and kisses she was wheeled off. Once the staff saw the group of us seeing Kira off they must have realized what a special girl they we working on!!

The hospital staff (Sacred Heart in Spokane) did a great job giving us updates during the surgery. Of course all the news was always good and the entire surgery only took about 3 hours. The short end of their prediction. She did have some breathing problems so they kept her on the ventilator in ICU for the afternoon. By late afternoon she was doing so well they moved her into a regular room in the pediatric ward.

Of course the next few days are going to be rough until the pain control is over with and she is back to normal.

I will try to get a picture of her tomorrow for this website.

THANKS to all for their support and best wishes.


December 13, 2004
WOW!! What a weekend!!

After Kiras Thursday (12-9-04) meeting with the doctor who will be putting in her feeding tube, it was decided to admit her into Sacred Heart and install a temporary tube to get her hydrated and gain some lost weight back before her surgery date (12-17-04). After spending Thursday night in the hospital she was released and sent home early Friday afternoon. By Friday late afternoon, she started vomiting which eventually ended up removing her temporary tube. After a trip to Bonner General Hospital emergency room, everyone piled up and went back to Sacred Heart. With great difficultly, the temporary tube was reinstalled and Kira and family spent the weekend in the hospital.

She is resting much better now. Feeding is done continually much like a IV. Giving her meds is much easier now. The surgery for the permanent feeding tube is scheduled for 8:00 AM this coming Friday in Sacred Heart. Best case is a 3 day stay, average is 5, worst cast is 7-10 days. So we will just have to wait and see.

On a better note, while in the hospital, Kira did her “hand thing” again in front of an audience. Purposefully trying to get her hand to her mouth and sucking on it was very cool. Everyone was thrilled to witness this amazing sight.


November 30, 2004
The Thanksgiving holidays had many visitors wanting to see Kira. Thanks to Ken and Michelle for letting it happen. At one time Kira was entertaining a whole room of people at once. We all had a great time listening and laughing to Kiras new Veggietales CD. Kira responded great to the CD as well and enjoyed it as much as everyone else.

Sleeping is still hit and miss, but hopefully a solution is just ahead.

Michelle mentioned a few days ago that Kira brought her hand to her mouth and sucked on it for just under a minute. Keep posted for a hopeful repeat!!


November 11, 2004
Numerous appointments with the Sleep Clinic, Nutritionists, and throat specialist have made for a busy last few weeks.
Kira is gaining weight again, back up to around 27 pounds. Probably because of taking the bottle again and being on a special formula. Overall her health is excellent.
Because of continued feeding difficulties, and from the results of the reflux and swallow studies, there is a chance that Kira will need to have a feeding tube installed in the next few months. Tonsils will come out at the same time. The best way to look at it is now Kira will have more time to spent learning and growing rather then trying to get food down her. And it might just be temporary. Even with a feeding tube she will be able to continue eating normally as well. When she is not struggling, she can be fed with a spoon to try and master this. When she is having difficulties, the meal would be put in the tube. The tube will not interfere with swimming or bathing. It will be kind of like a second belly button.
Teeth are still coming in. We noticed a new bottom one the other day.
Her new stroller is finally here. Pretty fancy and much more mobile than the wheel chair. She also has a new chair for bathing, but it works out great for watching Baby Einstein's also.
Lately Kira seems to be coming to life more and more. She has developed a happy yell when she gets real excited, and often starts laughing just on her own. Smiles are very common now and she seems to be constantly checking out her surroundings. When she gets worked up, a few loud hand claps usually gets her out of it and she can focus again.
Another behavior she does is roll her eyes back and away as she turns her head back the same direction. This usually happens when she recognizes a voice across the room or sometimes just because she seems to make contact with someone. She always smiles during this. It is almost like a channel is open and all the brain connections are there just for a moment. It only lasts for a few seconds but is still quite amazing.
She also is getting much better about having her hands come in contact with objects. Some textures or temperatures make her laugh just by touching her hand. A cold object in or on her hand brings big belly laughs. Too many times can be over stimulating, but a few times brings us all to laughter.
Still not much headway on the use of arms, legs or balance. But maybe this new reaction to cold sensations will move this in a positive direction. She is staying limber and remains quite strong.
All in all, Kira is quickly moving from a baby to a kid. And for that we are all very grateful.


October 15, 2004
With Kira's latest weigh in around 24 pounds, continued throat infections and dehydration problems, her eating and drinking situation is getting a very close inspection. Today she met with a pediatric ear, nose and throat specialist in Spokane. This doctor feels that the throat problems may be due in part to reflux from her stomach. With consistent swallowing problems, she is a good candidate for the tonsils being yanked. Kira goes back to another doctor in Spokane this coming Monday (Oct 18) for a swallow and reflux study. The reflux may be able to be controlled with meds, but if the swallowing does not improve with or without the tonsils, she may have to have a G tube, which would allow us to feed and hydrate her safely. In some ways this may improve her quality of life if the eating and drinking becomes too difficult or dangerous due to the risk or aspiration which could lead to pneumonia. We should have a lot clearer picture after the reflux and swallow studies.

On the bright side, Kira has discovered a new favorite food...vanilla pudding with pears. This is a great high calorie snack. Mema also found a bottle nipple that closely matches her binky. She took to it the very first time! Mom had tears in her eyes! Up until now, getting her to drink from a bottle or sippy cup was an all out battle....maybe those days are over!!

She usually has about one or two nights a week that she is up all night now, but usually recovers with some good naps and full nights sleep afterwards. Of course Ken and Michelle do not bounce back as quick but are getting used to the routine.

Michelle and Kira have another respite care worker helping out during the week. This finally gets them up to the full 40 hours a week she is allowed. And NEEDS!!


September 29, 2004
No updates because Mepa has been out of the country (he's back now!!)....

But that doesn't mean that nothing has been going on with Kira!!!

Michelle has been cooking up some pretty good grub for the little princess. As fall has produced an abundance of fruit and vegetables, canning and freezing has been almost a daily routine at the Fullingtons. Kira is certainly not going hungry anytime soon. And of course the quality and taste of the food cannot even be compared to store bought. Somewhere along the line she ended up eating better than all of us. Bottles are part of the past by now. No more formula and very little Goats milk. Drinks fresh fruit juice and other liquids from a sippy cup or eye dropper.

Kira has a new set of glasses which fit her much better. Thin wire rims that wrap around her ears. Very cute and seem to help a great deal. Without wearing them, her head goes back she looks up and away most of the time. While wearing them, her head is more level and she looks across or down, really trying to look at things.

The Fullingtons have upgraded to a bigger van that will accommodate Kiras needs better. They also have a lift for the new van when Kira and her wheel chair are too much to load and unload. The van even has a TV so Kira can watch videos while riding. As she gets older, she is much more tolerant to going places. This van will make those outings much safer and easier. THANKS to everyone involved!!!!

The other day, while Mema was holding Kira, she started a conversation with renowned doctor. This doctor felt very strongly that Kira still has a great deal of potential. She felt Kiras upper body strength, ability to laugh when tickled, and ability to recognize sounds and certain people, were important indicators of potential. Given enough time and therapy who knows what will happen. It certainly helps hearing those sorts of things.

Her overall health is still quite good. Reoccurring throat problems probably mean that her tonsils will have to come out eventually. The doctors feel that should wait a while until her throat size gets a little bigger.

Kira still is getting nightly hot tubs although it is getting a little darker and colder each night. A few weeks ago Mepa and Kira faced strong winds and cold temperatures, but she didn't seem to mind at all. Mepa might be imagining it, but as he gets her dressed in her swimming outfit, she seems very excited and knows that it is hot tub time. Being in the tub is a great opportunity to stretch and massage her arms and legs. She also practices standing and walking as the water is supporting most of her weight. As she is splashed around she always likes it loud and with a lot of movement. The more the water is flying around, the better she likes it. The only times she ever cries is when she has to get out!! The other day she was laughing so much in the hot tub we were all amazed. We also were lucky enough to catch it on video.

Kira is looking forward to elevating her princess status with the arrival of her custom made hot tub the middle of October. This will ensure that "tub time" will always be there for her.


August 8, 2004
Kira is continuing to make progress in quite a few different areas. Mostly her interaction and response to sounds and commands.

Water therapy is a daily routine. And will continue while the weather is fair. Currently Kira has to be transported outside her home to have her daily time in the water. We would like to find a good deal on a larger hot tub that can be installed where Kira lives. This would ensure the she gets the water time she needs. So if anyone knows of something which may help please email Kira. Thanks

Kira just had her 15 month check up, and all went well. She weighed in at 25.5 pounds which is an additional 1/2 pound of weight loss and is 31.5 inches tall. She is now officially on the growth curve at 75 percentile in height and 95 percentile in weight....way to go kiddo! We all watch in amazement as she continues learn and grow. Kira has improved her balance in a sitting position, is tracking much better visually, and has added something down-right awesome to her bag of tricks....putting several steps together (with balancing support) in the hot tub! WOW!


June 30, 2004
On Tuesday June 28th we had a meeting with all of Kira's therapists, social worker, service coordinator and care givers. Jolynn, her behavioral specialist, said Kira set a record for the number of people involved in such a meeting and for the number of therapists working with one child. It was a very productive meeting as we discussed visions, strengths, priorities, concerns, and goals for Kira. I was pleased to see long lists in all categories except the concerns. Kira has such a great support system and so many wonderful people in her life it is nice to have such a short list of concerns. Some of the topics discussed were focused on things like trying to get her arms moving purposefully, making sure Kira has all the necessary equipment to aide in her progress, finding ways to help her communicate her wants and needs, setting goals like desensitizing her enough so she can be more social in larger groups of people without getting too upset. We also discussed keeping a therapy log book so each individual therapist would be able to see what another is working on and all can be interlacing to work towards the same goals. We are going to try video taping some sessions as well for all to view and see first hand what is working well and what may need to be adjusted. We plan to meet quarterly so next meeting will be in September.
Other news....Kira sat on her own for 30 minutes on Tuesday, using her arms in a sort of tripod position. Janeen (baby wrangler) said she would even compensate when she start to lean and catch herself. WOW Way to Go Kira. Also on Monday, July 5th, Laura Thackray will be on Good Morning America! As you may remember Laura lives in Sweden and has been working for Volvo to make seat belts safer for pregnant women and their unborn children. The producer of GMA has also asked for us to share Kira's story. She will be calling Danielle as well to interview her. This is very exciting, Laura's work will help millions of lives and we are very proud to know her. Kira's adventures continue to lead us on this journey of winding roads. We are just trying to hang on and enjoy the ride!
Thanks again for your continued interest, kind words, thoughts, and many prayers.
Melody A.K.A. Mema


June 28, 2004
Kira was mentioned in an article about Laura Thackray. The article appeared in the June 22 Spokesman Review. Very interesting stuff. Check it out.. Laura Article


June 14, 2004
SPECIAL ANNOUNCEMENT
Kira, our wonderful granddaughter, is being adopted. All the searching in the world would never have found a more perfect set of parents for her, Ken and Michelle Fullington of Sandpoint. All of us who have cared for Kira her first year, are completely thrilled. During the last year, we have always wondered what plans Kira had, and what our role was. All that has now been answered. We have just been preparing her for her next step in life, and she is now ready to take that step. Way to go Kira, we are so proud of you.

Kira has touched and changed so many lives in our circle of friends. Now must be the time that Kira moves on, continuing to put her magic spell on others. With the love and caring from her new Mom and Dad, Kira will have every chance to develop to her highest potential.

A big thanks to both Ken and Michelle for opening their lives to us and including us in Kiras. They have gone out of their way to make us feel comfortable with this new arrangement and we are extremely grateful.

James (Mepa) & Melody (Mema)
(Notice our new names!! With the extended family growing we have to do something!! So now Grandpa James is "Mepa" and Grandma Melody is "Mema".)


April 24, 2004
Kira had her first birthday on April 10. There were two great birthday parties thrown for her but she slept through both of them. Kira received lots of wonderful clothes and toys which will come in very handy. Thank you to everyone who made this birthday a success. Your support and thoughts mean so much to all of us.

Glasses Update - First pair came in but were too small. Had to send back for the next size up. She should be seeing much better by the end of this month.

Kira is now receiving some additional therapy twice a week. This new therapy, CranioSacral Therapy, is done at Bonner General Hospital. If you are like us we thought the same thing, Cranioscaa WHAT?? Well it turns out that therapy is a method of treating your head and body for restrictions that cause pain and dysfunction. CranioSacral Therapy addresses the membrane system and the connective tissue that connect the cranium and sacrum to each other. CST permits improvements in brain and spinal cord function, which increases the health of the entire body, enhancing resistance to disease and assists in a return to optimal function.

CranioSacral Therapy works by releasing restrictions in the fascial and/or membrane system. The cranial bones and the sacrum are used as handles to these membranes. Normally the cerebrospinal fluid circulates within these membranes and has a normal pumping rhythm of 6-12 cycles/minute. Kiras was measured at a 2. We are hoping that her restrictions can be released and her normal rhythms re-established. We'll keep you posted.

Another part of this therapy is pool therapy. This should help her range of motion, get used to water so baths are easier, and hopefully help her find her hands and legs.

Including her other therapy, she has has formal therapy four times a week. And of course we all are constantly working with her also. We don't give her much of a break. But little by little we are determined to Kira the best possible chance and whatever life she has in front of her.

We have also been very luckly to be exposed to so many generous people. Kira now has her own swinging hammock that was donated to us. It is hanging right in the middle of our TV room. We have also been given TWO small wheelchairs and lots of other stuff to help Kira get around.

Her last doctor appt. weighed her in at 29 pounds and she had a clean bill of health..


March 10, 2004
Kira saw a pediatric ophthalmologist today in Spokane. It was determined that her optic nerve is about 50% smaller than normal. This is not unusual given her brain size the doctor told us. She also has cognitive blindness, altough the doctor prefers to call it cognitive impairment as she is not blind. This basically, as I understood it, means she is nearsighted and will be needing glasses. Boy is she going to look cute in those! You'll have to keep checking the photos so keep looking. We hope that this "new vision" will help her to want to reach for things and react more quickly to faces and movment in her surroundings. Janeen (the baby wrangler as we lovingly like to call her) continues to work with Kira. I am facinated watching the seemingly simple tools she uses to help Kira become more aware. Tissue paper under her head, arms or legs so as she moves them she can feel and hear the paper (cause and effect), kidney beans and bubble wrap for different textures, empty toilet paper rolls wrapped in foil with beads and bells strung down the middle of them, straws sewn on a pipe cleaner. Janeen is truely a blessing in our lives and if anyone can get Kira moving in the right direction it's her. Thank-You Janeen!

Sleeping is still a bit challenging. Kira is sleeping better but takes her longest nap, 5 to 6 hours between 11:00a.m. and 5:00p.m. Not helpful to Danielle during usual sleeping hours! We are hoping to move that nap closer to a "normal" night time sleep cycle.

Thats it for now. Thank-you for your continued interest and much appreciated support.

Mel


February 25, 2004
Sleep….Must get sleep….

Kira decided a few months ago that she didn’t want to miss ANY fun that might be happening. She has been sleeping about 1 to 3 hours a day. Which means while she is awake she is tired and cranky. Much like the rest of us!!! The pediatric neurologist recommended we give Kira high doses of Melatonin, a synthetic chemical which most brains produce naturally to start a sleep cycle. This so far has shown great promise. She seems to be having longer naps now and is much happier when she is awake. Let’s hope it keeps working.

Kira also has her very own special helper now. Her name is Janeen, but we call her the "Baby Wrangler". But she is much more than just an extra pair of arms, she is very knowledgeable and trained to help with exceptional kids like Kira. She has a grandaughter with special needs and is teaching us to help Kira become more aware of the world around her. She spends about 24 hours a week with Kira. With her help, who knows what Kira will eventually end up surprising us with.

Kira has also shown much interest in the Baby Einstien musical videos. She can now be found glued to the TV watching Baby Einsteins "World of Color" every chance she gets. She smiles when her favorite characters (puppet bugs with big eyes) show up on the screen. She even gets excited when the music changes just before the bugs show up. It is really amazing. Last night she chilled with Grandpa James listing to instrumentals of Love Songs on the stereo. Just as calm as can be.

There are many types of physical therapy she is receiving now. Trying to get her to sit up on her own and find her hands are on the top of the list. This is done by a variety of motions to help her brain make a connection to her body parts. We are also talking to her constantly as she is cared for. This helps her anticipate what is going on so she isn’t startled so much. The more she learns, the more encouraged we get. Thanks Janeen! :)

At her last Doctor check- up on Monday Kira wieghed 27 1/2 pounds. She has two teeth on the bottom and is working on many more at the same time.


January 11, 2004
Kira has her first tooth!! And boy is it a cute one.


January 7, 2004
The eye assessment test on Dec 19th showed that Kira has a very short range of vision. Basically right in front of her face. The eye doctor appointment had to be cancelled because Kira was very sick. She is doing better now.

Kira can really turn on the charm. The other morning Grandpa James was holding her and she stared into his face for over an hour. The whole time smiling and "talking" to him. And when handed off to Grandma Mel. She didn't let up.

We have also found that picking out eye buggers from Kira makes her laugh if she is in the right mood. It is quite a funny sight.

Kira has also starred in her first video. It is called "Smilin". Over the past 4 or 5 months I have compiled about 3 minutes of her smiling on video. If anyone has a chance to see it don't miss the opportunity. It will make you smile the rest of the day everytime you watch it.


November 30, 2003
We had a computer crash so sorry this took a while to get updated.

Kira's appointment with Dr. McDonald, the pediatric neurologist, went well. He reviewed the most recent MRI's and explained that he did not see any new surprises based on her first MRI last April. He feels the damage came around 21 weeks gestation and was possibly caused by the car accident although this can not be proved. He also feels that the placenta had some blood clots released and that they traveled to the artery in the brain. This caused a blockage that in turn cut off blood flow to the mid part of the brain. He explained it can never repair itself and the damage is very severe. Where there should be "gray matter" there is mostly fluid. I asked if any of the functioning parts left could take over functions that the damaged part can not accomplish, his response was that it is not impossible but not very likely as there is such a narrow canal between the front and lower parts that have minor functioning capabilities. He did believe the chance of Kira developing siezures is very slim to none because the part of the brain that these would most likely come from is simply not there. He was very helpful in assisting us with her current and on going constipation problem. He assures us that we can get this under control and she will not have to continue to suffer with the intestinal pains she has seemed to have since we brought her home in April. We are currently involved in a cleaning out process ( which is quite a mess at times :) She has a towel under her at all times ) that may take a while since she has been stopped up for such a long period of time. She seems to have some minor discomfort at times from cramping but overall acts as if she feels much better. Once she is completely cleaned out she will maintain this with a daily dose of Benefiber to keep things under control. Dr. McDonald would like to see her back when she is 18 to 24 months old. He will be able to tell us more about her development at this time. He revealed to us that at this time she has no life shortning ailments however because she is not in control of her motor skills and is inactive in this way that she is still at a higher risk for pneumonia.

Kira is continuing her physical and develomental therapies. She also has an appointment in Spokane on Dec. 12th with an eye Dr, will let you know how that goes. Her child develoment specilaist, Jolynn has also enrolled Kira in a Project for Children and Youth with Deaf-Blindness. We are setting up an appointment for Dec. 19th for an in-depth functional vision assessment for Kira. Will keep you posted on this as well.

Thank-You all for your continued interest and all the love and support you give this whole family every day. It is because of you we are able to pick ourselves up and walk down this path each and every day.


November 3, 2003
Kira has an appointment with the pediatric neurologist at Sacred Heart in Spokane on November 17th. Kira has been pretty cranky lately as her first teeth are coming in.


October 15, 2003
A recent MRI as I understand it has reveled severe damage to the mid brain due to an injury to the main artery that supplies that part of the brain. This restricted blood flow in turn caused this area to stop growing and atrophy, causing very little if any brain function in this area. The front and lower parts of the brain appear to be damaged as well but to a much lesser degree as they have a higher level of function and are continuing to grow. We are in the process of setting up an appointment with the pediatric neurologist in Spokane. Will understand more from this meeting and will continue to update you.


October 1, 2003
We took Kira to the University of Washington Hospital In Seattle, Washington. There they got to know her and her history. They were unable to perform some of the developmental tests they had planned as Kira was not very happy or cooperative at that time. We spoke to a nutritionist who specializes in special needs care. She will find someone similar to work with us in our area closer to home as Kira's nutritional needs may change as she continues to grow but will most likely not be very active. We also spoke to a Dr. briefly who tried to answer some of our questions. He used the word Cerebral Palsy and believes Kira will have many challenges to come. He also believes she will develop seizures at some point. It is his view that the car accident in December of last year is likely to be the cause of her condition although he did say there was one more genetic test that could be done to rule out a genetic cause. They would like to see Kira again when she is a year old. At this time they hope to perform more developmental tests to determine where Kira is at that point. In the meantime we will have sight and hearing tested and continue with the physical therapy and developmental therapy Kira is receiving here in Sandpoint.