August 8, 2010
She truly is being a little trouble maker. She's defining what it is
to be a 7-year-old teenager.
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.
Kiras sixth birthday (April 10th) wasnt 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 Mepas visit that Kiras 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 doesnt respond to all of our silly antics anymore as she is older!!
Michelle's Note: Mema and Mepa: no worries .Kiras lack of response to your silly antics was simply a matter of seizure meds in her system. Days after discovering the feeding rate issue, shes much more alert and back to being a ham. Shes really enjoying her Baby Einstein and Veggie Tales videos.
What follows is a very recent update from Michelle...........
As many of you know, weve 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 whats 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. Weve only had the Cough Assist for 5 days and its 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. Its 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 thats totally up to Miss Kira Fae! If its only a week, Ill 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
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.
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.
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.
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!!
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.
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 dont think I will ever forget it.
September 20, 2007
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 Aunts 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.
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
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.
April 14, 2007
Kiras 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.
January 24, 2007
Well, what to say except WHEW!
October 31, 2006
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.
September 19, 2006
- 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.
July 20, 2006
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.
May 28, 2006
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 doesnt 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.
March 22, 2006
Lots of other stuff is going on in Kiras 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
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
October 11, 2005
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. :(
September 5, 2005
Teething When will it ever end......And please dont 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 Kiras 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 Kiras 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.
Even though Kiras 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.
July 11, 2005
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.
April 19, 2005
March 3, 2005
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
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
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
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
October 15, 2004
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
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
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
June 28, 2004
June 14, 2004
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)
April 24, 2004
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
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.
February 25, 2004
Kira decided a few months ago that she didnt 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. Lets 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 isnt 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
January 7, 2004
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
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
October 15, 2003
October 1, 2003