Thursday, February 28, 2013

Advocating for Kayli and her special needs

Last month, we placed an order through our private insurance to get Kayli a hospital grade bed (that looks like a typical bed, but lifts and has features for Kayli's needs).  Her bed request is still awaiting medical board review.  

We also ordered Kayli a crawler to help her with trunk (abdominal), head, and limb control.  It was approved!!! I am now working with the mobility company to order the crawler.

In addition to the 2 items listed above, we also ordered Kayli a special needs car seat.  Kayli currently has a wheelchair to get her from place to place, but she is limited to only transportation modes that have a wheelchair lift and tie downs.  She is able to go to school on an adapted school bus, and to appts in our van because both have lifts and tie downs for her wheelchair.  The limited modes of transportation is concerning because Kayli's van has already broken down on us several times.  Once the van is irreparable, Kayli will no longer have a way to get to her medical appts.  Although we are VERY grateful for our van, it is old (1993) and has high miles (last year, we drove well over 5,000 miles just for dr and therapy appts for our family!). We do not have the income or funding to purchase/lease a more dependable vehicle, so we thought the next best solution would be to get Kayli a special needs car seat.  She is almost 4 years old, has scoliosis, kyphosis, and muscle control issues (like CP) so she cannot safely sit in a car seat that would be found in a store.  She needs an adaptable (special needs) car seat that will allow her to sit forward facing, tilt back and provide molding for her spine conditions. If he has a car seat, then she could travel with many modes of transportation, like others in our community do.  She would be able to fly on a plane too! 

I received the unfortunate news today, that the car seat request was declined by the insurance. The Carrot car seat (made by Convaid) is expensive, but Kayli will be able to use it for years to come because it is adjustable enough to grow with her!  

We are fortunate to have a wonderful private insurance, where we can appeal the insurance's decision and go to a board meeting to review the medical equipment.  I am excited for the opportunity to advocate for my daughter in front of the board next week.  There was a time earlier in Kayli's life where I was denied the rights to advocate for Kayli.  When the Children's hospital put DNR's (do not resuscitate) orders on Kayli without our signature, we were denied the right to advocate and choose life for Kayli.  When she was sent home from another hospital and we were told "she needs to go home and die", even as we begged for the dr to help Kayli...we were denied our right to advocate for her.  When I talk about Kayli's Krusade (to rid of the worthless label), it may seem like a harsh, ugly life...but to me, I am proud that with God's Will and such amazing support from our family friends, we have the ability to advocate for Kayli's life!  In this part of our journey, Kayli needs important equipment to join in our daily lives.  I am grateful for the opportunity to be heard, to advocate for her equipment and supply needs next week. :D  
With great challenges in life, come greater rewards.  I am grateful for everything and everyone we are Blessed with in our lives. <3 

Homecoming week at Kayli's school!

Above, Kayli is dressed and ready to support her school basketball team, the Panthers, for Homecoming!! 

Below, Kayli is in the Homecoming spirit for crazy hair and sock day! 

Wednesday, February 27, 2013

Rare Disease Day

February 28th is Rare Disease Day.  This day is important for our family, because all 4 of our children have a rare disease/syndrome.  

It is important to us that you know Kayli has been discriminated against because she has a rare Trisomy Syndrome.  In the beginning, we were alone in the journey, and felt deflated every time the high risk ob told us our daughter was deemed to die.  Many dr's in Kayli's past have blatantly chosen not to treat her, or have harmed her simply because they do not know about her syndrome.  Kayli is here.  She is worthy of life, and of sharing her life, just as our boys are. Every child, no matter their abilities, deserve love, dignity, and hope.  Every Family needs support, and some families who have a loved one with a rare disease have to look harder and farther to find someone who understands their journey as they do.   

Bringing awareness to rare diseases/syndromes spreads empathy, empowerment, hope, unity, and networking opportunities for research.  When any one of us stand alone, it is easy to feel overwhelmed, easily deflated, and  stressed with the unknowns.  When others on a similar journey join together, they are able to combine the resources, information, and hope.  With awareness comes compassion, support, information, better understanding, love, and hope.  

If you see someone who is supporting Rare Disease day, take 5 minutes to ask them about their loved one with a rare disease or could be the connecting piece to their network of hope. <3 

Sunday, February 24, 2013

If you ask, God will guide you!

You can't change the wind, but you can adjust the sails! 
Make "the impossible" your next challenge in life, always focusing on your purpose! ♥ If you ask, God will guide you! ♥

Ketogenic Diet and possible Heart Failure?

Kayli has been on the diet for a month now.  Her break through seizures (seizures even while on medications) have decreased greatly!  She is on a lower dose of Keppra and Banzel while on the Keto diet, and is having fewer seizures.  

Since her heel clip surgery (2 weeks ago), Kayli's heart rate climbed.  She worried everyone with her heart rate in the 180's when normally it would have been in the 110's or 120's. 

The dietitian ordered more water intake, examining the possibility of dehydration causing the high heart rate. Kayli's heart rates did come down, but seemed to plateau in the 150's.   The cardiologist put a halter monitor on her for 24 hours, confirming the extraordinarily high heart rates. Both the dietitian and cardiologist agreed in increasing Kayli's water intake to see if she need more of a push or bolus to get her past the plateau.  The Cardiologist also set up an appt. for an echo (heart ultrasound) to check the function of Kayli's heart.  The dr. is cautiously aware that Kayli could be in heart failure.  

Last Friday, Kayli went to the Keto clinic.  The team is increasing the water intake, so that Kayli is on 50 ml's of fluid (KetoCal or water) in the entire 24 hours of the day.  In addition to those fluids, we are to give her 600 ml's of med and free water flushes in the 24 hours.  Needless to say, Kayli is going through a LOT of diapers, sheets, and chuxs (protective pads)! lol  With the increased water, Kayli's heart rate is down in the 130's now, while awake (we are almost back to her baseline!!!).  

During the h/r plateau, Kayli's ketone levels dropped to negative (no ketones) in her urine.  Her blood sugar levels were in the 70's and 80's while her range is to be in the 50s-70s.  The dietitian explained that the ketones may be evaporating (like acetones do).  With the increase of water, I have found her Ketones to be back up to 40 (Ketosis).  Her  blood sugar level has been in the 60's.  

All around, the increase in water has helped her 1. blood sugar level 2. ketone level 3. heart rate 4. hydration

The dietitian is adding MCT oil (coconut oil, or similar) and Beneprotein to Kayli's KetoCal (formula/food).  This will keep Kayli regular, even when we decrease her water intake.  It will also add protein calories while we decrease her sugar calories (KetoCal). Kayli is on such low amounts of daily calories (288 total), so she cannot afford to decrease the sugar calories without adding protein calories. Her metabolism is so slow.  I joke, saying she has a metabolism like her Momma, where we can smell food and gain weight! LOL 

We currently cannot afford the hundreds of dollars it will take to add this to her diet, so we are submitting it to both insurances, hoping for coverage. In the meantime, we are continuing to give Kayli higher sugar calories than she needs. 

Kayli has one more week to keep her casts on (from her club feet heel surgery).  Her casts smell horribly because the casts were placed so high up her thighs.  Even though the right cast was cut down in the emergency room, they are still pretty high.  Add the fact that Kayli is getting large amounts of fluids, you can imagine the amount of watery stool and urine she is producing.  Since the casts are so high, and she is more than filling her diapers, the urine and stool are flowing down her casts/legs.  The smell is becoming unbearable!  The dr who cut her cast down said there isn't anything to worry about the urine going down the interior of her cast/leg. I am not worried, but repulsed!  I am calling the ortho tomorrow to get her casts replaced.  Nobody should have to put up with the smell, urine, and feces on them!  Not to mention the bacteria growth likely happening in the dark inside of the casts! YUCK!!

If Kayli's heart rate does not completely go back down to her baseline, she will have the echo this Friday.  The Cardiologist remains cautiously concerned that she may be in heart failure.  If this is the case, Kayli will receive supportive heart medications.  

Wednesday, February 20, 2013

Kayli and Mommy are speaking at UIC today!

Today, Kayli will be in front of Doctorate students at the University of Illinois Chicago! We will be speaking of Successful advocacy, the state waiver program, a Trisomy diagnosis/life saving treatments, and Kayli's home care needs! ♥ Thank you for supporting Kayli's Krusade to shed the worthless label!!! ♥ 
If you are on facebook, please be sure to "like" her page, at Kayli's Krusade !!! 

Monday, February 18, 2013

Kayli's friend Brandon, speaks of his own Trisomy 18 diagnosis!

We were told to terminate Kayli's pregnancy because she was labeled incompatible with life (a worthless label) once diagnosed with Trisomy 18.  We, of course, chose life for Kayli, rather than termination. 

Kayli's Krusade is to share the awareness that there is a spectrum of life and abilities found among the Trisomy population!  Here is a video of a boy, also with a Trisomy 18 syndrome diagnosis.  

Please watch as Brandon, himself, speaks as a self advocate!! Nobody can predict the future, our kiddos do NOT follow a manuel, nor should we!  Meet  Brandon! <3 Brandon, self advocate with Trisomy 18!

Kayli's IEP

Kayli has an IEP meeting tomorrow!  IEP is an abbreviation for Individual Education Plan.  When a child has developmental delays and is 3 years old (or older), the child leaves an early intervention program (home-based therapies) and moves into the public school district.  Once in the public school district, the parents and school officials come together to set up a "plan" to help educate the child with his/her fullest potential in mind. The plan I speak of, is the IEP. 

Kayli has global developmental delays because she lost apprx 75% her brain size when she had the 32 minutes of anoxia.  We, as her parents, had a decision to make for her 3rd bday (a choice we NEVER thought we'd be making!!).  we had to decide where/how Kayli would best learn.  We met with the school district, and toured a couple of school options to decide what program would be best for Kayli's educational needs.  Our options were: at home (with a teacher and therapists to visit weekly), in a local school/in district, or at a special needs school.  Some choose to keep their medically fragile child at home, because there are many illness' in a school setting.  Although Kayli is medically fragile, we feel she is strong enough to endure the same colds her brothers bring home to her (from their school), and that Kayli would be happiest with friends her age, in a school setting.  We chose to place her in an all special needs school.  The school she is in, already has all the equipment she needs (smart board, standers, light boxes, etc), special needs curriculum that has already been tweaked through the years, teachers experienced with special needs children/education, and wheelchair accessiblities. With Kayli going to the all special needs school, she is saving our school district money and frustration because they do not have to purchase/provide/train to give Kayli the appropriate learning opportunities that allows Kayli to reach her fullest potential.  All our school districts receive gov. funding for every day a child attends school.  The funding that our school district gets for Kayli, gets forwarded to the school district that provides Kayli the education.  It is a win, win, win...for everyone involved! :D  

After picking out the appropriate venue for learning, we also came together with an education and nursing team, to set up an education plan for Kayli (an IEP).  In an IEP, we set up learning goals, medical precautions, equipment needs, and all other support needed to educate Kayli at her level of developmental growth.  Kayli's IEP includes many therapies.  She receives physical, occupational, developmental, hearing, vision, and speech therapies while in school. Kayli is meeting some of the goals that were previously written in her IEP, and she is moving farther away from other goals.  This IEP mtg tomorrow will help us as parents, work with the school to adjust Kayli's educational plan.  Currently she is using an FM (hearing) system, light box, eye communication devices, and switches.  I hope to add use of their standers  (she will be in new AFO's/braces in a couple of weeks!), and the use of the school pool for aquatic therapy.  

There are many steps in getting a child with a trach into a school aquatic therapy program.  Many professionals are not comfortable with the added risks of putting a trached child in a body of water, especially if they are not trained for emergent situations that could develop.  Kayli has been in the ocean, takes baths, and frequents public pools in the summer.  She LOVES being in any/all bodies of water, because she has Kypho-scoliosis (curvatures of her spine) and the water relieves tension while releasing gravity that restricts her body movements.  Kayli will not only enjoy the pain free moments while in the water, but she will learn body awareness, trunk control,and limb control.  

What an amazing country we live in, where physically and developmentally challenged people are given equal opportunities to learn on their own level of developmental growth. 

If you need help with your child's IEP, please contact me and I will try my best to help you with the guidance and support you need!  

Sunday, February 17, 2013

Kayli's Krusade!

I have opened a facebook page to log the many great strides that Kayli and her friends are making to get rid of the worthless label that is wrongly attached to Trisomy! If you are on facebook, please visit her page and "like" it to follow her Krusade to change the worthless label!  

 Kayli's Krusade!

Thank you for your support and encouragement! 

Post surgery cast issues and dehydration

Kayli has had a challenging week post surgery.  Once home, she was crying and  her heart rate was more than 200 bpm a couple of times.  Her right cast was very high up her thigh, and was causing pain.  Both casts caused skin breakdown within 24 hours.  The second night after surgery (apprx 24 hours after surgery), I took Kayli in to the ER to have the surgical team cut down her cast.  Once home, Kayli showed signs of relief, but her heart rate remained high.  We gave her Tylenol but her h/r continued to rise.  We started giving her more water than usual and we noticed that she was smiling more!  Friday, we gave her double the amount of free (filtered) water.  She continues to smile and is in great spirits, and her heart rate is slowly decreasing towards her normal range.  After looking at her feeding formation, I realized that her concentration was short of water.  The Dietitian agrees that her water intake was likely too low, then add on the stress of surgery and lack of fluids for 12+ hours...Kayli was dehydrated.  We are watching her closely and monitoring her Keytones and Blood sugar.  The first couple of days home from surgery, her Ketones were very high.  The Dietitian thinks it was because she was using her own body fat (Ketones) for energy since she was not getting what she needed externally.  

Tonight, Kayli is resting comfortably in her Tumble Forms seat, sitting in her therapy room, watching Mickey Mouse and Veggie Tales movies! <3  She has been smiling, and turns her head to check out the newly cleaned therapy room! 

Because Kayli's casts were hurting her, and because the casts are positioned awkwardly, I had not been putting Kayli on her potty.  She has not been stooling though, so I placed her on her potty, Friday.  She did not go.  Yesterday I put her back on and she voided (peed) and stooled (pooped)!  I put her on again a couple of hours later, and she stooled again! :D  This is a good sign of hydration, and constipation relief! 

It is good to see a resolution to the higher heart rates, and constipation.  Her heart rate is still higher than normal, but I am told it could take a couple of days until we see her h/r come down to her normal rates.  


Tuesday, February 12, 2013

Surgery results

The first surgery was 2.5 hours behind schedule, because it took the anesthesiologist that long to get an IV into Kayli's veins.  Kayli is a very hard stick, because her veins are the size of a hair and they are deep.  The anesthesiologist had difficulty even with an ultrasound!  The best person to access an IV in Kayli is usually an anesthesiologist or a NICU nurse.  The NICU nurses are experienced in getting IVs in the tiniest of veins, as they work with premature babies who have similar vein sizes as Kayli does.  

The orthopedic surgeon went into the heel cord release with a hope to correct Kayli's club feet with a 50% correction in ankle position.  We knew the likelihood of her getting Kayli's feet to position at 90 angles would be slime, but we had hope to get her as close as possible to the proper position.  The ortho surgeon decided to apply an "I" shaped incision rather than going in percontaneously (small hole for instrument incision).  She needed to have a clear view of the tendon, as there was scar tissue to work around from Kayli's previous club feet surgery.  The surgeon had a good view, and released/cut the tendon so that it has no contact with her bone.  This procedure was to release any positioning restraints that the muscle implemented.  Once the tendon was released, Kayli's feet did not release from the poor positioning.  Xrays were taken in the OR, and the test revealed Kayli's joints were progressing into the club foot typical malformations.  No matter the tendon release, the position of her feet are not easily correctable.  Kayli's ankle position was only correctable at 20%.This was disappointing news.  Kayli's feet ARE better than they were prior to the surgery, and we are still able to get her in AFOs so she can stand again in her stander (which she loves!), but her AFOs will need more adjusting now.  Kayli will have her very own pair of High Heel Wedges now!  Once out of her casts (in 3 weeks), she will be sporting high heel wedges (braces).  We will visit the corrective joint (MAJOR) surgery discussions as Kayli's function deems necessary.  The surgeon who once thought Kayli was minimal/non-functional, has now declared she believes Kayli may one day, need in some way need more functional foot/ankle positioning...and is anticipating reviewing Kayli's needs in a year! It was a beautiful moment, when I heard the hope in the once disbelieving dr's words and tone! The surgeon was pleasantly surprised when she saw and heard another dr's accounts of Kayli's abilities to feel pain, knowledge of what was happening to her, and responding as any other "typical" person would.  Kayli has made another surgeon a believer in her!  <3 
Kayli's wedges (afo's/braces) will be molded in 3 weeks when she gets her casts off.  She will have the wedges within 24 hours and will wear them 23 hours a day to maintain the corrected positions.  She is no longer allowed ankle physical therapy/range exercises because her ankle will likely break if forced out of her current joint positioning.  

The next procedure was a little complicated, because the resident ENTs were unavailable to examine and/replace Kayli's clogged ear tube in her left ear.  This compromised the test results.  Kayli's left inner ear is "dead" in the audiologist's words.  She has profound hearing loss in her left ear.  Her right ear is ever so slightly diminished from her previous results.  She continues to need aiding in her right ear.  The audiologist is referring Kayli to another audiologist who specializes in Cochlear ear implants because he believes Kayli's hearing may be correctable at the inner ear level.  The ABR (test) audiologist is sharing his results with his colleague, and I will set up an appt to further discuss the cochlear treatment options.  

After surgery:  Kayli's heart rate was pretty high and she continued to cry.  The surgeon said the pain is typically not bad with this surgery, but Kayli was showing otherwise.  She was given Fetanol in surgery, and twice after surgery, and Tylenol (IV form).  She did not find comfort until they gave her large doses of pain meds.  Her casts appear to be too high on her thigh, and are causing red marks and pain. I have a call in to the ortho office, requesting consult on the new cast positioning.  

Kayli had a good night last night, and went to school today.  She cries out in pain when you touch her casts, but relaxes when she is not moved.  She was without food from midnight yesterday morning, until we started feeding as we left the hospital last night (apprx 5:30pm).  She is tolerating her feeds well, and has stayed in Ketosis! :D  

Monday, February 11, 2013

IV access, the start of the first surgery!

The anesthesiologist finally got IV access in Kayli's upper right arm!! It took apprx 2 hours with an ultrasound and 10+ pokes, but the first surgery has just begun!  After this surgery, Kayli will be fit for her AFO's (braces) while in the OR, then her legs will be casted (over her knees).  She will wear the casts for 3 weeks.  Then the AFO's should be ready and available for daily wear. 

In the OR (operating room)

Kayli went back to the OR about an hour ago.  Once in the OR, the anesthesiologist has the difficult task of accessing a vein for IV access.  This could take hours! She will also be giving Kayli a pain med injection below her spine.  

There are a couple of changes in the surgical plans:

    The orthopedic surgeon is not going to do the Tetonomy a percontaneous.  She will make incisions (I shaped) on the back of Kayli's heels, rather than a small hole, to cut Kayli's heel cords.  The reason the surgeon needs to go in through incisions, is because she has to work around scar tissue, and she wants to cauterize the muscles ends (after she cuts them) to prolong the release (the muscles will eventually grow back).  

     The dr. for the ABR (hearing test) now has my written permission to take Kayli's left ear tube out and replace it, if it is still clogged.  Once the new ear tube is in, the hearing results will be more accurate.  This procedure calls for an additional surgeon (an ENT surgeon).  We will not know if the ENT surgery is needed until the ENT evaluates her ear condition (prior to the ABR testing).


Sunday, February 10, 2013

Updates: Potty Training, Ketogenic Diet, Surgery in the morning

Potty Training: Kayli has had consistent bowel movements (pooping) and voids (peeing) in her toilet for a week now!  At least once a day, she is put on her toilet and within 2 minutes she goes on the big girl potty!  This is a HUGE accomplishment, we never thought Kayli would be capable of doing!  The most amazing thing about it, is that Kayli is the one who decided she wanted to potty train.  I simply put her on her toilet when she started holding her urine and stools all day! Since Kayli is effectively and consistantely using the toilet every day, I have decided to increase the amount of times I put her on the toilet.  My goal is to put her on the potty every 4-6 hours now, to see if she is ready/wants to be completely potty trained. I do not expect to ever take her out of diapers, but our miracle girl never ceases to amaze me! <3 

 Ketogenic Diet:  Kayli has been doing very well on the diet.  Her seizures have already decreased in frequency, duration, and heart rate and oxygen saturation drops.  She has gone days without a seizure while on the diet! Her Ketones are being checked daily now that she has maintained Ketosis.  Her numbers are between 80 and 160 every time we check her Ketones.  Her blood sugar levels range anywhere from 59 to 100.  Those are great numbers, as we do not want her dropping below 45.  
She has not been constipated (a common side effect of the Keto diet) and has been stooling on her toilet daily! Kayli appears to have lost some weight, as her thighs appear to be thinning out some.  We have not weighed her recently, but we expect some loss with the diet. Kayli is currently getting 288 calories a day, down from 376 calories a day when she was on the Elecare formula.  She has her Mommy's genes, where her metabolism is so slow that if she smells food she gains weight! lol  Kidding aside, I hope to adjust her caloric intake to a higher amount once she is ready to adjust and stay in Ketosis. Eventually, we will try weaning her off her seizure medications, thereby eliminating the awful side affects of the medications.  
We are keeping Kayli on her feeds all day today, because she is not to eat solid foods past midnight tonight, in prep for her upcoming surgery in the morning.  Pre-operation instructions allow her to be on clear liquids (apple juice, water, etc) until 4 am but Kayli is not able to have any juice (sugar/carbs) while on the Ketogenic diet so she will have water.  We will be bringing her Keto Cal (formula/food) so she can eat on the way home from the hospital.  

Sugery:  Kayli is going in for a bilateral Percantoneous Tenotomy tomorrow morning.  This means both her heel cords will be released/cut in order for her to be able to move her feet into a 90 degree position.  The new position will allow her the flexibility to stand in her stander, which will promote bone growth and strength.  Standing will also promote good digestive mobility and provide a different perspective of life! Kayli loves spending time standing tall in her stander, a pastime she greatly misses.  Along with the flexibility to stand after the surgery, Kayli will also gain the flexibility to wear many more shoes her size.  Since she currently does not have the ideal foot range, she is not able to wear many shoe styles.  While the general population takes for granted the ability to wear shoes in the winter, Kayli has not had the same abilities to wear proper footwear for the weather conditions. This surgery will allow her to fit in most shoes her size!  She will be in casts (each leg) for 3 weeks.  While under anesthesia, the dr will cast her for AFO's (braces) that she will wear daily, to maintain the correct foot positions. 
Kayli needs this surgery because she was born with Club feet.  She was born with her feet positioned in a prayer formation and her heels were not at a 90 degree angle. When she was younger, she had club foot surgery and the Ponsetti bracing, but she did not tolerate the serial casting and her treatment was not ideal.  We are giving her another opportunity to correct her club feet while providing bracing support daily, which she tolerates better than casting.  

Surgery:  After the Tenotomy surgery, and while still under Anesthesia and in the Operating room, Kayli will undergo hearing testing.  She will have an ABR (auditory brain response) test.  This test will tell us more about her hearing capabilities.  She currently has a hearing aid for her right ear, and we were told she has profound hearing loss in her left ear (so much loss that it is not worthy of a hearing aid).  Kayli has had difficulty with her hearing and ear infections because she has very narrow ear canals (typical with a Trisomy diagnosis).  As Kayli has grown and gotten older, we are hoping her ear canals have also grown a little larger/wider.  We are re-evaluating her hearing process to determine her aided needs.  Kayli is using an FM system at her school now and we are working on getting her the same equipment for home/life use.  We do not feel it is appropriate to limit her hearing opportunities for limited school hours only.  Once we have the test results, Kayli will be fit for new hearing aids, and a home FM system to use for her everyday life (not just during school hours). Since she only has hearing in one ear, she has lost the ability to differentiate background noise from someone's voice when speaking to/near her.  The FM system will help, as it makes the voice talking to her louder and clearer than the background noises. 

Please say a prayer for guidance of the surgeons' hands, for comfort when recovering from surgery, and for peace in our Lord's Will for Kayli.  Thank you, and God Bless! <3 

Tuesday, February 5, 2013

Kayli's dentist finds floating teeth!

Kayli went to the dentist yesterday. The roots for her two front teeth, and one other tooth died when she was without oxygen for the 32 minutes.  With the roots being dead, the teeth have nothing to "root" them to her, and they are now floating under her gums. 

There have been many times where we thought Kayli was teething in her upper jaw, but we have yet to see a single tooth completely come through her upper gum.  With Xrays, the dentist found that she has a mouthful of upper teeth that have come in (broken through bone)!!  We do not see the teeth, because her top gum is hiding them.  So, all those days when we could have sworn she was teething but could not see the teeth...we were right! 

The dentist is talking with the periodontist (gum dr) to discuss when the ideal time would be to cut back her gums (via laser surgery).  She will not have to be sedated while the surgeon cuts back her gums.  

Things to be considered before surgery: 
1. Baby teeth guide and hold a space open for the permanent teeth to grow.  Once Kayli's gums are cut back, the floating (non attached) teeth will fall out.  This will delay the eruption of her permanent teeth because they will no longer have a guide/saved space.  
2. Kayli's upper jaw is growing upwards instead of horizontally in line with her bottom jaw.  This is because teeth will continue to grow until they meet resistance/touch a reciprocating surface.  Kayli's gums are secluding her top teeth, so they have not been able to grow to touch the bottom teeth.  If the gums are cut back, her upper baby teeth will grow down to reach her bottom teeth.  This may eventually bring her jaws back into a functional position.  
3. Is cutting back the gum now going to make enough of an immediate direction towards positive change, or will it be more beneficial to wait until the permanent teeth start coming in before cutting back her gums?
4. Will the delay in cutting her gum worsen the jaw position?
4. Will Kayli need additional surgeries to correct her jaw, defeating the sole purpose of immediately cutting the gum/delaying the permanent teeth's eruption.

The overall visit was an exciting one, as we learned Kayli has been cutting her upper teeth!  Her teeth are all present and accounted for, and each tooth seems to be in it's proper position!  Kayli miraculously only has 3 roots affected from the 32 minutes of anoxia (lack of oxygen)! The dentist was impressed with the condition of Kayli's teeth! Kayli tolerated the x-rays and hands in her mouth, with minimal irritability, allowing us to get a good view of her development!  

While on the Ketogenic diet, we are to watch everything going on and in Kayli's body.  Today, the dentist used a carb free product to clean her teeth, and suggested using Tom's toothpaste for daily brushing!  


Sunday, February 3, 2013

Fairing better after a troubling day

While at home, we are to monitor Kayli for sign of excessive ketones (rapid breathing, flushing, and rapid heart beat).  We also monitor her for more difficult to see symptoms: nausea, abdominal pain, frequent urination and excessive thirst. 

Kayli had a scary day Friday. She had rapid heart beat, increased/rapid breathing, she was gagging, and sneezing.  Each of these symptoms can be signs of excessive amounts of Ketones! Kayli is not likely to vomit, because she had a Fundoplication.  This means a portion of her stomach was wrapped around the lower esophagus to narrow/reinforce the opening, making it harder to reflux or vomit.  Kayli also had a nasty drainage from her left ear, a low grade fever, and has been extremely fatigued/lethargic at times. Because Kayli's symptoms go beyond the scope of excessive Ketones/complications of the Keto diet, we believe she must have gotten a virus while in the hospital.   

She was feeling much better yesterday, although she is still getting low grade fevers, asthma, and ear drainage.  She is still sleeping more than her normal, but I think just about anybody does when they are sick and especially when their entire metabolism system is changed. Prior to the Keto diet, when Kayli was sick her seizures would increase.  This has not been the case now that she is on the Keto diet!!!! The Keto diet already seems to be helping her!    

Kayli's care plan has changed because she is not able to have many carbs/sugars while on the Keto diet (to maintain Ketosis).  Kayli cannot have children's Tylenol because the liquid and chewable medications have carbs in them.  Since her diet is maintained with minimal carbs, she cannot have any additional carbs.  She now gets half of a Tylenol regular strength pill.  We crush the half pill, and put it in a syringe with water to give to her through her Gtube/feeding tube.  

Now that she is on the diet, we have to watch all carbs/sugars that go in and on her body.  In the summer, there is only one kind of mosquito repellent we can use on her (all others have carbs) and she only has a few choices of sunscreen that do not have carbs.  Even her lipsmackers lib balm even has carbs! Just about anything with flavor is likely to have carbs/sugars.  

While it is quite an adjustment period to learn all the cautions and new norms, I can say that I am happy with the direction the diet seems to be going.  Kayli has many more days where she has not had a single seizure!  Although the seizures look slightly different (which can be scary when you are used to certain tell tales) they are happening less frequently.  Her seizure medications have already been decreased, so I am encouraged to think this diet may be the solution to get subduing Kayli's seizures while getting her off the seizure medications that come with harmful side effects!!  :D