Latest News

Ryliís Immunologist Appointment

September 25, 2009

Ryli had seen an immunologist 3 weeks ago to see if her undiagnosed issue can stem from a possible Auto Immune Disease.This doctor ordered blood work to look for an auto immune disease and to check to see if her immune system is weak so that she may qualify for IV treatments to replace her immune system with another.

 

Today we went back for our consultation.As we expected, all was NORMAL.Infact, her immune system is working above ďnormalĒ as it is slightly elevated at the respiratory system.This means that her immune system is not only doing what it should be doing, but working above normal to protect her respiratory track.

 

All her CBC labs were pretty normal.

Whatís all of this mean you ask?Back to the drawing board..

 

Spine & Hip surgery

May 5, 2009

Ryli had surgery to replace the growth rod kit in her spine for a larger one and to remove her hip hardware since her left hip looked great, the right hipís femur is loosing the ďbendĒ that was made last year in her surgery and will probably need to be re-done in the future.

The surgeon came out to tell us that her spine has lost flexibility.Future adjustments are not possible anymore.He wasnít sure if there was anything but a fusion that could be done for Ryli.However, since Ryliís lungs wonít be mature until around ages 8-10 years, this was really bad news.I mentioned trying the Titanium Rib but that was quickly shot down.We were also told that we have 3 months to let him know if we were ready for the fusion or if we were just going to let her body take over on itís own, hoping that her own 77 degree curvature of her spine wouldnít get worse quickly and crush her lungs.3 months just isnít long enough to choose this type of destiny for our daughter.

 

Ryli was only in-patient for 2 days and it went well.She is certainly needing her Oxycodone pain medication but she is looking really good.Once we got home, I called up the Shriners and asked if they could see Ryli again when they are here in June.It took a little begging, but they will see her June 5th.I will be utilizing the Shriners to see what ďotherĒ options we have because the only 2 options from Ryliís surgeon was not good enough and really, just not an option.

 

May 21, 2009

Ryli had her post-op.However, the PA isnít the one who walked through the door like every other post-opóit was her surgeon.I was really nervous wondering why he was here because Doug didnít come to this appointment with me.I was not ready to discuss his type of options.

However, he said that the Shriners contacted him and went over other things possible to try to buy time for Ryli until a fusion can be done.A Titanium Rib was one optionówhich is one that I mentioned to our surgeon a couple weeks ago.This is a bar that will sit between Ryliís ribs and push them apart so that once the spine starts compromising the lungs, the lungs will still have room to expand as needed until you can safely do the fusion at an appropriate age.

Another option is fixing her severe pelvic tilt which might push the spine back to center a little bit once fixed.They will drill screws into the pelvic bone on both sides and anchor it up to the ribs.Itís kind of like fish-hooking the pelvic to the ribs.

There might be a third option but itís one that they might have to just try if all else fails.

 

So, we have OPTIONS!!!!!

 

The surgeon wants surgery done by this Fall.I told him that we will keep our Shriners appointment June 5th, then once we think about all the information given to us, we will see the surgeon by July and give him our ideas, see what ideas he has, make a decision and then book the surgery for Fall.

We donít like to constantly throw surgery at Ryli, but she is undiagnosed so we feel the need to fix everything that brakes.We donít know whatís in store for her future so we need to keep trying things to give her more quality of life.Sheís so strong and so perfectówe love her so much that we are just not ready to let her body crash and sheís not ready either or she wouldnít stay so strong all the time. There is so much technology that can fix so much.

 

 

Genetic Appointment

April 23, 2009

Ryli had her yearly genetic appointment.Every year we pick a fresh brain in the genetics department.This time, the geneticist we saw tested Ryli for ARX (per our Metabolics doc). They are testing her liver as well as sometimes the liver will leak enzymes into the blood stream causing Ďneurological likeí symptoms.

I emailed this information to the geneticist that we had seen in Baltimore and he was wondering about testing Ryli for SCN1A.

I am hoping that we can get this blood test done while Ryli is in-patient May 5th

for her spine kit replacement surgery along with the hardware removal in her hips .

 

Ryliís sick

March 19, 2009

Yesterday Ryli was having a lot of secretions.Through the night, Ryli had to be suctioned about once every 2 minutes.She was pulling her chest to breath and was on 2 leters of oxygen to keep her stats to low 90ís.Today, this morning, we took her to the Urgent Care minutes from our house.Xray showed no RSV and no Influenza.It did show Viral streaks which showed Ryli to have an Upper Respiratory Infection.Ryliís temp only reached to 99.2.We were given more albuterol and was able to take Ryli home with the ďokĒ from her pediatrician.Since Ryli did not have the flu or RSV, we did not want her to be admitted to a hospital for this respiratory infection, and then walk out having RSV or anything else from the hospital.We are rotating the Tylenol and Motrin, giving her vest treatments, albuterol treatments and holding her a lot.

She has opened her eyes a few small times throughout today.Sheís just not feeling well but will be better in a couple days.

 

Neurology

March 17, 2009

Happy St. Patrickís Day.So, Ryli had just a follow up Neurology appointment.All went well.Since Ryli has been pause breathing for about 6 days straight, our neurologist thought Ryli should get an EKG done right away.We did this immediately after Ryliís appointment so we will hear back from the neurologist with the EKG results today or tomorrow.Cross your fingers that Ryliís heart is still strong and healthy.I donít anticipate any bad news but weíll see.

 

Also, Ryli only did VERY well on Creatine for about the first month.She was moving her arms, legs and head A LOT.Her Physical Therapist, Occupational Therapist and Speech Therapist noticed a huge difference.However, after that first month, Ryli returned back to her old fatigued self.We just raised her Creatine level from 1 gram to 2 grams.This did not make a difference for Ryli at all.So, today, we decided along with the neurologist to start Ryli on Ritalin.Since Ritalin is for ADD disorder (slows down their brain), in children with slow brain activity alreadyóRitalin does the opposite and will speed it up.We will stop Ryliís Creatine supplement tomorrow and give her 2 weeks to get used to the change, we will then add 2.5 mg a day of Ritalin.Hopefully this will speed her brain up and she wonít be fatigued 24x7.

 

Update:

A nurse called to give the news that Ryliís EKG was ďnormalĒ.WhewÖ

 

Ryliís surgerĒiesĒ

March 13, 2009

Ryli grew out of her spinal growth rods (ďPosterior Spinal Fusion Application of Segmental Fixation Posterior Growing RodsĒ) so May 5th 2009 Ryli is scheduled to have spine surgery replacing the entire kit.Also, around this time, Ryli is due to have her hip hardware taken out (out patient) so her spine surgeon is wanting to do these at the same time.They will Xray her hips to see if the sockets formed around Ryliís femur.If not, they will leave the hardware in longer, if the surgery to her hips did workóthey will take the hardware out.

Due to the spine surgery, Ryli will be admitted for up to 5 days if all goes well.

 

MRI w/ Magnetic Resonance Spectroscopy

November 21, 2008

So, Iíve been emailing our Metabolic doctor and Johns Hopkins genetic doctor hoping that one of them had results to Ryliís MRI w/MRS.Per our Metabolics doctor, Creatine in Ryliís brain is normal.I really canít believe it.Her symptoms fit this diagnosis and yet sheís negative for it?The genetic doctor will get back to us next week with his opinion of the MRI but Iím sure they wonít find a Creatine abnormality either.So, Doug and I have discussed with Johns Hopkins that once Creatine tests are doneówe will be giving Ryli Creatine Monohydrate anyway.There is only 36 cases so whoís to say that she truly doesnít have a Creatine deficiency?Johns Hopkins said that it was not a bad idea to try the Creatine Monohydrate but that we should keep a log of Ryliís every minute of every day while we are giving this supplement to her.This way, we can report any changes at all whether they are positive or negative and if there is no change at all, we will stop the treatment.

 

Ryliís election day episode

November 17, 2008

Ryliís on her 3rd round of antibiotics.First she was on a 5 day, then a 10 day and now a 5 day again since sheís still on oxygen here and there during the days.Sheís still coughing quite a bit and pretty junky.Hopefully this one takes care of it.

 

November 11, 2008

Ryli is getting sick again and we finished off the antibiotic this last Saturday.I called Ryliís Pediatrician yesterday late afternoon and told him that Ryli was having a hard time being weaned off of oxygen.She is sleeping really well during the night but once she wakes, she is miserable.Her eyes are really red, she is just not looking like sheís feeling better.So, today we took her to the hospital for a chest Xray and then brought it over to our Pediatrician.He called Radiology and was told Ryli still has Pneumonia.Our Pediatrician put Ryli on a stronger antibiotic since her Pneumonia is still there and now both her ears are red inside.Hopefully she will be back to base line in a couple days.

 

November 7, 2008

Ryli is still doing pretty good.The vest treatments are sure clearing out her lungs.We think she is on the mend.Whew.This one was scary but our little girl is getting bigger and stronger.

 

November 4, 2008

While most of you were out voting for our next President, Ryli decided to get sick.We took her to the Pediatrician and he diagnosed Ryli with Walking Pneumonia.What?Oh no!We already know how this will turn out!The Pediatrician said that since she doesnít have the fever, she can go home but with heavy duty antibiotics.Although we want her home, we can almost predict the type of night we will be having.We get her RX from downstairs from our Pediatricians office and start her first dose right then and there.We get home and start giving her vest treatments, inhalers and PediaLite.We sure donít want a fever coming on because we all know that she will start having Febrile seizures.††

So, itís 8pm and Ryli just went to bed.1:00am comes along and Ryli is needing oxygen.I start her on oxygen and turn on the lights to find that she is working VERY hard / pulling her chest in to breath.Is it a full fledged Pneumonia now?I yelled to wake up Doug and we do another vest treatment, pump her with Motrin and inhalers.We sit and watch for an hour and a half to see if we can help her before rushing her to the ER where they will poke and prod her all night long as well as exposing her to RSV and the Flu (even though she is getting vaccinated against these). Can we do it?Ryli is un-responsive and really scary looking.This is how she gets and this is what she does to make us panic and rush her in.So, 2:30 comes along and we are still sitting at her bedside.She is closing her eyes and goes to sleep!What?Sheís going to sleep?I canít believe that we just might have done it on our own.Where we dumb for not getting her in?Not sure.But we have oxygen and know CPRóthe fire station that comes to our home when we call 911 is literally 10 seconds from our house.So, we have her on oxygen (3 liters!!!) all her machines including the PulseOx (like we do every night throughout the night) and she is sleeping.We turn off the lights and before we knew itó6am is here!She wakes about 8:30am and looks GREAT!

 

Ryliís MRI w/ Magnetic Resonance Spectroscopy

October 22, 2008

This is the day weíve been waiting for the past 6 weeks.This MRI is with MRS (magnetic resonance spectroscopy).This should show the amount of Creatine in Ryliís brain.Since there are only 36 Creatine deficiency cases, Radiology will be sending this off to be read as this is not the typical MRI that radiology is used to reading.I will be also sending a copy to Johns Hopkins Genetic doctor to help read the MRI.Ryli did well.After poking Ryli 6 times to insert an IV and not being able to find a vein (because her veins are really tiny and there is so much scar tissue from past IVs) for the IV anesthesia Propofolóthey just went with the gas (Sevo) hoping that nothing would go wrong and nothing did.Whew!

Doug and I had Childrenís Hospital make us a CD of the MRI.We looked at it and although itís all too foreign for usówe did see that she still has brain atrophy.We will be updating the website once we hear the results of Ryliís MRI.

 

Ryli is shedding her teeth

October 19, 2008

So, we bought Ryli a new Colgate Spin brush even though she has a Sonicare.This morning I tried out the new toothbrush and BOOM!!!Ryliís mouth filled with blood and there was a tooth on the tip of her tongue.As I couldnít manage to gather myself and NOT freak outóI screamed for Doug.I could not scoop the tooth out of her mouth because she bites and when she bites, her jaw will lock and you canít open it until she is ready to open it herself.Anyway, once Doug grabbed the biting blockóNO TOOTH!!!Did she happen to swallow for the first time?Or, did she aspirate it like she does everything else?After cleaning blood and tears (from Mama and Dada) we found that she had lost a bottom tooth.We felt the next bottom tooth and found that it was very loose as well.We didnít expect this to start happening at 4 Ĺ years of age. So, then Doug pulled Ryliís second tooth to avoid another possible tooth in Ryliís lungs or stomach.Then we noticed that a third tooth on the bottom was loose and both of her top teeth were loose.Whatís going on?This is like a Domino effect.

Well, we pretty much freaked out with this whole thing and called Ryliís Pediatrician.Since Ryliís HUGE MRI w/MRS is the 22nd, her pediatrician ordered a chest Xray as well to see if there is a cute little tooth sitting pretty in Ryliís lungs.Yikes.We will be watching Ryliís ďoutputsĒ as well and do the thing that only parents could ever do and that isódigging in her stools.Ryliís big brother wrote the Tooth Fairy to let her know that she owes Ryli for 2 teeth but that Ryli ďateĒ one of them.He was excited to wake the next morning with money under Ryliís pillow and his letter was gone.

 

October 21, 2008

Update:So, we took Ryli to her Dentist, Dr. Steven Vanek at Green Mountain Dental Group.We never took Ryli to the Dentist through Childrenís Hospital because we didnít want sedation every time they looked in her mouth.So, we take Ryli to a family dentist that is the most amazing dentist.He assured us that this was a pretty normal age for this to start happening.Infact, he felt Ryliís new teeth beneath her gums and said that they are pretty big.Because of this, the new BIG teeth are pushing 4 out at the top and 4 out at the bottom.I guess Ryli does still do ďNormalĒ things.††

Later today, Ryli decided to give up her tooth.Yes, with a little digging, she left her tooth in a diaper full just for Mama and Dada.Whew!She didnít aspirate it.We are so thankful.We didnít sleep well the past 2 nights.

Wish Ryli luck on her MRI tomorrow.We are hoping that the MRI shows a Creatine defect in Ryliís brain.We will be sending a copy to our Genetics doctor at Johns Hopkins as well since Radiology might not be able to read the creatine levels.Only 36 Creatine (GAMT) cases worldwide.Hopefully 37!

 

Another Metabolic appointment

September 2, 2008

We had another metabolic appointment today.We were very excited for this appointment because the paperwork from our last metabolic appointment showed that Ryliís urine came back with elevated Creatine and Guanidinoacetate.We thought ďFinally, the first test showing that something actually was not normalĒ.However, when we got there, we were kind of reassured that the creatine levels are probably due to Ryliís Hypotonia.They still plan to go ahead with testing based on Ryliís creatine levels just to rule out some things.One is called Creatine Transporter Deficiency.This typically happens in males due to a damaged X chromosome but in rare cases can show symptoms in females. If Ryli does have this, there is no cure or treatment so we are hoping for something else.

We really felt that Ryli had something called GAMT (Guanidinoacetate Methyltransferase) which is curable with creatine supplementation.However, our metabolic doctor doesnít feel that Ryli accurately represents this diagnosis.She is scheduling an MRI (under sedation) with MRS.MRS will indicate the levels of creatine in Ryliís brain to help aid in her diagnosis.

We have contacted the Genetic doctor at Johns Hopkins for further advice as he felt Ryli should be tested for GAMT.If Ryliís MRS comes back questionable, then they will test her for GAMT along with other creatine disorders.

When the test results are back, we will post an update. Thanks for all your support and prayers.

 

Eye Surgery

July 31, 2008

Ryli had Strabismus surgery.This surgery was to pull her eyes back to center.We were hoping that she wasnít moving her eyes because the muscles were too tight.Well, this was not the case but hopefully looking at objects wonít be so confusing for her.

Few days later---So, Ryli has laughed out loud the past 3 days following her eye surgery.Yahoo.This is amazing.We video taped it and so we are hoping to get it on her web page so you all can see.We love having had this surgery done.

 

Ryliís Metabolic appointment

May 27, 2008

So, we finally got our foot in the door of a Metabolical doctor.Weíve tried here and there for the past few years and have been unsuccessful.There is a protocol of getting into this department and we sure didnít follow it and still got in.Yahoo.

Of course, Ryli is complicated.The Metabolic doctor found it interesting that Folic Acid put Ryliís Infantile Spasms at bay and so she ran a couple tests.

One was looking for Pyridoxine Dependent Epilepsy.Pyridoxine Dependent Epilepsy has recently been shown to be allelic to folinic acid responsive seizures.A couple of weeks, we should hopefully know more.

 

Itís already 6 weeks!

June 19, 2008

Can you believe itís been already been 6 weeks since Ryliís hips surgery?Or, the technical term would be: Intramuscular Iliopsoas Lengthening at Pelvic Brim and Proximal Femoral Varus Derotational Osteotomy (VDRO).Today Ryli had her cast of 6 weeks removed and made into a splint since there is a weaning process.  The x-rays that were taken showed that the hardware had not slipped again and are holding in place.  The weaning process from the cast takes anywhere from 1-4 weeks so we start with 1 hour twice daily then the next day 2 hours twice daily and so on.  She does well but is crying every time we move her legs which for Ryli to cryóit really hurts her!  If we leave her laying there without the cast, she does fine as long as you aren't moving her legs for her. 

When Ryliís cast was removed, there were a lot of little cuts called ďFissuresĒ which is from the Gortex lining inside the cast.They look like paper cuts, and we all know how bad paper cuts burn, poor thing. Anyway, sheís not enjoying her baths quite yet since she is having a lot of muscle spasms and her heavy drugs donít seem to keep the pain at bay.Our little girl is so tough and in timeóshe will be feeling back to her old self.

 

Ryli Is Home!

May 15, 2008

Ryli was able to come home today!She is doing great with her pain level, but the cast is really proving to be a challenge.Weíll get the hang of it and come up with some good, comfortable places for her to spend her days and nights.We are just happy to be home as a complete family now.We are all very tired, including Ryan, but hopefully things will be close to normal soon.Thanks for all of the support, prayers and well wishes!

 

Ryliís Hip Surgery - Update

May 13, 2008

Ryliís revision on her left hip went well.They were able to get her in for the 3:00 pm. slot Ė best case scenario.Dr. Chang was able to get a larger bracket on her femur to hold it well.Ryli had more pain this time than last time so they increased the flow from her epidural and they added morphine and valium.She was able to get to sleep at about 3:00 am. and seems to be much more comfortable now.The current plan is to stop the epidural tomorrow and see how well she does with just regular pain medication.If she does well she will likely be sent home Thursday evening.Thanks for all of your support, we appreciate it!

 

Ryliís Hip Surgery Ė Part Deux

May 12, 2008

Ryliís bones are actually a little bit soft Ė mostly because she does not walk or otherwise bear weight on them often.Unfortunately, this has caused a complication to her situation.Her left hip did not quite stay in the required position.This means that Ryli will be going in to have that hip redone with slightly larger hardware.Better to have caught it now than later, but itís unfortunate that she needs to have it re-done.She should be in there sometime between 3:00 and 6:00 pm. Depending on the emergency schedule and Dr. Changís other surgeries today.We are hoping for the best!

 

Ryliís Hip Surgery

May 9, 2008

Ryli had her hip surgery today.VDRO.Ryan had a fever the night before, so that threw a little bit of a wrench into things.Doug and Ryan stayed at home while Lisa and Ryli went in for the surgery.The surgery itself went very well, but the IV was difficult.It took up the first two hours of the surgery.The surgery was 7:30 am. To 1:30 pm.There was some concern that she would have enough bleeding to require a transfusion, but she did not need to have one.She was doing great afterwards, and went right to her room on the ďPedísĒ floor Ė no ICU for our big girl!

Ryli is doing so well, that they will turn off the epidural Monday morning.If she does well with the pain, she can go home later that day, or Tuesday morning!

 

Ryliís Spine Adjustment

April 16, 2008

Today was Ryliís first spinal growth bar adjustment.Ryliís growth bars were put in August 28, 2007 and adjustments (as she grows) should be every 3-6 months.Well, this one lasted 8 months without adjusting them.We all (including doctors) wanted to wait until RSV season was over before weíd put her in the hospital for this surgery.

This morning we were at The Childrenís Hospital of Aurora at 5:30am for her 7:30am surgery time.I must say, they were ready to start her surgery at exactly 7:30am.These are the times when you wish they were running late so you can spend more time with your child.Ryli was scheduled to stay over night for a 23 hour observation.Her surgery went quicker than planned and she did very well. The previous fusions at top and bottom to screw in the bars were still holding strong so just the adjustment needed to be done.

Ryli usually takes about 1 hour to start waking up but after the first 10 minutes, we scratched the palm of her hand and her eyes popped wide open.So now we know the trick.The recovery nurse scratched her feet to make sure that she still had feeling in them.She didnít like that at all and let it be known that she in fact could feel it.

She did so well that she didnít require oxygen and her stats were good.After about 2 hours in recovery, Morphine, Tylenol and OxycodoneóRyli was discharged to come home.Yes, no overnight stay.We cannot say it enough when we say ďSheís the toughest OíHara EVERĒ.

 

Ryliís Sick

February 9, 2008

Today Ryli started getting a fever around 3pm.She was looking pretty miserable but we were keeping her hydrated with her formula and PediaLite along with Motrin.Then around 9:15pm, Ryli started to have a Febrile seizure so we rushed her in. Her oxygen stats at home were around high 80ís so she was on oxygen then the 1 minute drive to the ER showed Ryliís stats dropped to 74.Her lips showed cyanosis but after they deep (and I mean deep) suctioned her and pumped up the oxygen really highóshe pinked up.The chest Xray showed a Viral infection, RSV test came back negative, Influenza test was negative so they were thinking it is a cold.They wanted to transfer Ryli to a Trauma hospital but had also told us that every hospital bed in Colorado is filled with RSV kids.Why would we want her admitted then?If itís Viral then there are no medications for it.We didnít want to admit Ryli with a Cold and leave with RSV so after 4am Sunday, we brought her home.

It is now Monday morning and her temp is 99.5.She looks pretty good and is moving her arms and legs so thatís great.

 

Merry Christmas and Happy New Year!

 

December 21st 2007

Last year, December 22, 2006, Ryli was diagnosed with RSV.So, this year I took her in for a chest Xray the 21st and had her Pulmonary review it.We were told her Xray looked great.Then the early morning of the 22nd, Ryli woke with a high fever.Her chest was working really hard to breath and so we were panicked.I called the Pulmonary doctor (on-call) and told her that Ryli was working really hard in breathing and wasnít very responsive but I did not want to take her in since the hospital was filled with so many different germs right now.She called in an antibiotic right away.Doug and I pumped up Ryliís oxygen, we gave her nebulizer treatments, vest treatments and pumped her with Motrin and PediaLite.WE DID IT!!!!We were scared but our girl pulled through it.She was doing much better the very next day.She didnít have Febrile seizures.Wow!!!

Everytime we take Ryli to the hospital, she leaves there with another bacterial/viral infection as well as us too.

 

Orthopedic appointment

December 11, 2007

Today was a simple appointment to make sure Ryliís spinal bars are still in place and doing well.Her spine looked pretty good and has another big curve as she is really growing fast. We will have Ryliís spine surgery again for an adjustment after RSV season in April 2008. Her hips are another story. They are looking pretty bad and will require surgery after RSV seasonóprobably May 2008(after her spine surgery heals). Her left hip is still sitting in the shallow socket (not curved around the hip bone yet) but the right hip is sitting about ĺ out of the socket and reshaping the socket itself which is pretty bad. Because of this, she will probably have to re-do hip surgery within about 10 years down the road because the right hip will want to go back to itís reshaped position.

Ryliís thumbs. We will eventually need to cut the tendons in Ryliís thumbs since they are so tight to where Ryliís thumbs are resting in her palms. This is making it hard for Ryli to grab onto anything and weíre hoping that we will see a difference in her ability to grab after surgery.

 

Shriners appointment today

December 7, 2007

This morning Ryli had her follow-up appointment with the Shriners.They looked at the Xrays they took and said that the growth bars on her spine looked pretty good.He told us that her back surgery was definitely a good choice for Ryli and itís good that she is curving her spine again because it means that she is growing pretty fast which then means that we can fuse her spine hopefully before sheís 10 years old.I found that when you are given a 10:30am appointment, GO EARLY.I had Ryliís Xrays taken early in the week and today I showed up for the appointment at 7:30am.I was in and out by 8:11am.This is WAY better than the 10:30am we usually show up for and then get to leave by 5pm.Iím all about showing up 3 hours early for every Shriners appointment from here on out.

 

Ryliís Synagis in 2007 thru 2008 for RSV

Ryli started her Synagis this Fall / Winter.Once again, our primary insurance company denied our appeal for Synagis.I believe the letter stated she was ďnot high riskĒ.Man did I get on that phone and leave quite a voice mail.How can they consider her as ďnot high riskĒ?Have they looked over all the hospital and doctor bills?Let me guess---NO! Every time Ryli is sick, her ďroom and boardĒ cost is about $400,000.00 - $700,000.00 for a 9-14 day stay which is the amount of time Ryli seems to like to stay.This year she has only been hospitalized twice (knock on wood please) and thatís pretty darn good.Hopefully she is getting stronger the older and bigger she gets.She had a slight fever early this week, which obviously I was terrified. I took her temperature throughout the night and she slept in our bed for a few nights.Guess what?No Febrile seizures!!!!!We know that Ryli likes to have these seizures when she runs a fever and has to be given injected Valume to stop them.

I told them I needed them to call me back ASAP and have the information ready to explain how they came about Ryli not being high risk.Needless to say, they never called me back.Anyway, thank goodness for Medicaid secondary.They are picking up the cost of the shots.Itís about $2700.00 per shot and Ryli will get one every month from November thru April (6 shots total).I guess our primary insurance would rather pay a $500,000.00 ďroom and boardĒ bill again vs. $2700.00 x 6 shots.Not a smart move in my opinion!

 

 

Ryliís Spine Surgery

August 29, 2007

Ryli is still recovering and doing pretty well.They are keeping her pain medication going (Oxycodone) and Tylenol.Without her pain medicationómy girl is in quite a bit of pain.

She has growth bars on each side of her spine and hooks to keep them in place on top and on bottom.They fused a couple vertebras together on top and on bottom and then placed the hooks in place.We are not sure of what the new curve degree is but we will find out per the Xray they took.

Ryli had BAD ďPulmonary ToiletĒ which means that she retained a lot of fluid and her lungs as well so itís been 3 days of constant suctioning.Ryli was fitted today for a TLSO brace that will open on both sides so that itís easier to put her into it.

Our little girl is so strong.She is such an amazing little girl and we love her and are so proud of her strength.

 

August 27, 2007

Posterior Spinal Fusion Application of Segmental Fixation Posterior Growing Rods

Ryli had her ďgrowth barsĒ placed on both sides of her spine today.Her surgery went from 8:30am-1:30pm.She did pretty well and everything went as to be expected.

 

 

Ryliís Spine Surgery Consultation

August, 2, 2007

Today we had our consultation with Ryliís spine doctor Ė Dr. Mark Erickson.He went over what we can expect for the surgery, and for the surgeries that she will undergo every 4-6 months until she is about 10 years old as a result of our decisions to use growth bars.Once she is big enough, we can fuse her spine at which point it will be unable to bend or grow.The initial surgery will be about 4 hours long and she will be in the hospital for two to five days, depending on how she handles it.Of course she will stay longer if there are unexpected issues.Follow up surgeries will be much shorter, depending on whether the growth bars still have enough ďgrowing roomĒ to handle her growth, or if they need to be replaced with longer ones.Other factors such as infections or issues with the braces on either end will determine the length and intensity of future surgeries.For those of you that may be interested in which vertebrae he will be using Ė it depends!Normally heíll look for something in the range of C2-4 and T2-5.Heíll use whatever he thinks will work best for Ryli.Usually he will fuse a couple of vertebrae on each end to make a solid foundation for the hardware.

We are nervous about the surgery, but we feel strongly that this is the best course of action for Ryli.Please join us in hoping for the best results for our little girl!

 

Ryliís Spine and Hips

July 9, 2007 (excerpt from e-mail)

We made some big decisions today.  We had our "Parent Conference" with Ryli's Orthopedic.  We tried to get into the best Spine clinic in Colorado but they wouldn't see Ryli because of her age and because she has Neuromuscular Scoliosis and they don't do much for that.

Ryli's orthopedic doctor was more concerned about Ryli's hips than her spine.  He is saying that we can't even wait until next spring to surgically form Ryli's hips into their sockets due to excruciating pain that Ryli will be going through soon if not fixed.  Her left hip is sitting in the socket but the socket has not been encouraged to shape around the bone because Ryli does not weight bear.  Her right thighbone did not develop a curve to even start to angle towards the socket and that hip cannot be fixed without breaking it and reshaping it into the socket.  This is the hip that will be causing Ryli a lot of pain if not fixed very soon.  However, it does not make sense to fix this hip problem without fixing her spine since her spine tilts her pelvic bone.  Both hips will need to be surgically fixed and not just one because the surgery shortens the leg. 

Our Orthopedic doctor stressed the need for Spine surgery as well for obvious reasons--health problems.  Her top curve (by her heart) is now 44 degrees; her large curve is 77 degrees.  Once surgery is done, her large curve can be reduced to around 20 degrees and her top curve to around 10 degrees.  They will insert a growth bar that will need to be expanded every 4 or so month and once a year--the entire thing will need to be replaced.  This surgery is a huge commitment as there will be quite a bit of follow-ups and monitoring between surgeries as the bone can fuse to the bar.  If the bone fuses, it cannot be reversed and her organs will not be able to grow leaving her organs to be crushed.   

So, spine surgery will be August 27th at 8:30am and hip surgery will be 3 months later. 

We were told that the Spine surgery is actually a pretty fast recovery and pretty non invasive - about a 4 hour procedure.  We were also told that hip surgery is very painful and the kids are kept on an epidural for 3 days.  They said that it is a pretty ugly and painful surgery for Ryli and would be about 6 hours.

 

Ryli is not an easy case and we try to push surgeries off until absolutely necessary.  We will just continue to treat her symptoms as needed. 

 

Johns Hopkins

February 19, 2007

Happy 3rd Birthday to our little girl RyliÖ

So, we just received an email from Ryli's Genetics doctor, Dr. Cohn, in Baltimore.Nothing abnormal was found with the Muscle biopsy but muscle atrophy (small muscle fibers).He wants to coordinate more blood work with our Neurologist here to test Ryli for Retts Syndrome yet again for the 3rd time.Johns Hopkins has a more thorough, more detailed way of testing for Retts Syndrome J

 

February 4th thru February 13th 2007

Our trip was not what we expected at all.Ryli started having Febrile Seizures in the middle of the night and was rushed into GBMC (Greatest Baltimore Medical Center) by ambulance.As before, Ryli has had fever induced (Febrile) seizures.Once we arrived at GBMC, she had a temperature of 102.Xrays showed that she had Pneumothorax (Collapsed left lung).Since Ryli was critical, the EMTís had to bring her to the nearest hospital available which was GBMC.They are not a trauma hospital so once she was stabilized there, she was then transferred to Johns Hopkins which is a trauma hospital.See the Johns Hopkins Icon for further information.JH info here

 

Baltimore!

February 1, 2007

We are in Baltimore for our Johns Hopkins & Kennedy Krieger appointments!Click here for the latest updates on the trip!

 

Johns Hopkins & Kennedy Krieger

January 2007

Great news.We will be taking our trip to Johns Hopkins & Kennedy Krieger January 31st thru February 9th 2007.We are so excited that finally after a year and a halfóRyli may get a diagnosis.

What a fight this has been to get her there.The ball had been dropped countless times.We received our list of appointments we will have when we are there.

Also, a couple weeks ago, Ryli had her 3-month follow up appointment with her orthopedic doctor.We were told that the curve in her back is too severe to ignore anymore.Ryliís orthopedic doctor stated that she would need to have growth rods put on her spine.Then 2-3 times a year, they will go back in and adjust the bars to Ryliís growth.Obviously we are not jumping to quick to make this surgical appointment and are relieved to be able to get our second opinion with the orthopedic doctor at Kennedy Krieger.

 

Tis the Season

December 22, 2006

Ryli hadnít been feeling well for a couple weeks but we and the Pulmonary doctor decided to see if Ryliís body could fight whatever was making her feel bad on itís own.Well, she couldnít.I called the Pulmonary the evening of December 22nd to let her know that Ryli was still feeling under the weather.She wanted me to go to the Emergency Room for a chest Xray.I did.The Xray showed Pneumonia and Bronchitis.The lab work showed RSV.Although she is receiving Synagis shots monthly to avoid getting RSV through the 6 month RSV season, she still got it.Itís a good thing that she was almost 3 months into the Synagis shots because the RSV could not multiply.††

She was going to be transferred yet again to another hospital but I begged them to let us just take her home during the Holiday Season.We did and she is doing much better.

 

Ryliís more interested

December 2006

Itís really funny to see how many of Ryliís doctors cringe when I have to provide them a list of Ryliís treatments and Doctors and they see ďChiropractorĒ.As Iíve listed before, Ryli has been going to Dr. Jason Leavitt, a Corrective Care Chiropractor for 13 months now and I swear by him.Ryli is able to move her limbs more freely.She can actually hold her arms up in the air and keep them there.She also can lift her legs off of the floor.The latest improvement is seeing and tracking.Ryliís eyes had been stuck to where she could not move them.After about 8 months of treatment, she can move her eyes up and down.Now, she follows toys.Not by moving her eyes side to side, but moving her head in the same direction of toys.We have been testing Ryli ourselves over and over and she is doing it.She is finally interested in looking around and focusing on things.

Dr. Leavitt doesnít perform the ďsnap, crackle, popĒ type of therapy on Ryli.He uses instruments on Ryli that stimulate the nerves.

She loves the warm waterbed treatment afterwards.

 

Ryliís Halloween

October 31, 2006

Ryli was in the hospital last year for Halloween but made up for it this year.She went as a clown.

Columbine High School put together a Trick or Treat street.We put Ryliís clown costume on and Ryanís Darth Vador costume on and went to the trick or treat street.Ryli was in her Tiger Chair where we went through tunnels and the high school students packed Ryliís chair with tons of candy.It was very emotional for me because once the first student put a piece of candy in her chair, everyone else followed.Infact, children were taking candy out of their baskets and giving Ryli some. I cried because my girl received so much attention there.Click here to see her Tiger Chair and Clown Costume.

 

Improvements

October-November 2007

Well, we held our breath through the entire month of October.This is Ryliís first October where she was able to stay out of the Hospitals.Ryliís first October 2004, she was 8 months old and hospitalized the first time for Respiratory Distress/Aspirated Pneumonia.October 2005 she was in the Hospital for Respiratory distress/Aspirated Pneumonia where she earned her tracheotomy.This yearóNothingÖAs hard as the trach is for us, we love it.

Dada started Ryli on Vitamin C and within a week, she smiled and/or laughed for us 6 days in a row.See one of the laughing pictures we managed to capture, click here.

 

Genetics

October 27, 2007

Genetics at Childrenís Hospital took a detailed look at Ryli this morning.They are mainly looking at Rett Syndrome again and testing her for Energy Disorders.For the list of tests and lab done on Ryli, click here (scroll to the bottom).

 

Ryli Giggles

October 24, 2006

Finally Daddy was here to experience a milestone.Daddy was holding Ryli and I covered her with a blankie and she giggled.I kept fluffing the blanket onto her and every time was a giggle.Grant it, the sound isnít through her mouthóitís through her trach but what music to our ears.She did this over and over for about 2 minutes.We, no, Dada thought he was video taping it but it didnít work.Maybe weíll catch the next one, video tape it and post it on her site.

 

Ryli going to Johns Hopkins/Kennedy Krieger soon?

September 29, 2006

Well, I received a phone call from someone at Kennedy Krieger.They received her medical records again and were shooting for a December visit.However, they were under the impression that it would be inpatient.Since our Insurance Company will only pay for OutpatientóKennedy Krieger will try for that and if they canít organize an Outpatient visit, they will call our Insurance to see what can be done to get her there as Inpatient.If this visit happens, it will be both hospitals (Johns Hopkins / Kennedy Krieger) testing Ryli.We were excited to have Medicaid secondary now that the visit may happen, however, the two hospitals do not accept Medicaid Out of State.

Of course not, that would have been way to easy for Doug and I J

Also, Ryli had her immune system checked by blood draw.Presbyterian St.Lukes tried to draw blood and once againócouldnít.We had to go to Childrenís Hospital to get the blood work done.Ryliís veins are way to small and all the veins in her hands and arms are blown.Childrenís Hospital is the only place that can get blood from her Knuckle or Ankle (her ER trip this last Augustóthe doctors could not find a vein to get an IV started).Needless to say, Ryliís immune system is fine.Not sure why she gets sick every month a couple times a month.

Sheís the healthiest little sick girl ever.

 

Ryli listened to commands

September 15, 2006

Ryli was in her Gait walker and doing pretty good with neck control (somewhat).She was looking at a doll and listened to commands when asked to look at the hair, then shoes, then face.Ryli was picking her head up and looking right where she was asked.How exciting.

Ryli should be receiving her Pony Walker any day now and we just canít wait.

 

Ryliís trip to the Emergency Room

August 14, 2006

Ryli was rushed in this morning at 5am to Swedish ER (Urgent Care) for Respiratory Distress.The official diagnosis give was Probable Viral Pneumonia with Hypoxemia.

The chest Xray taken showed fluid in her upper lungs but the left lung was not collapsed.

We knew Ryli was getting sick due to high volume of mucus so we turned in a trach culture this last Friday.Results have not come back yet but the tests they ran on Ryli during the ER trip showed nothing going on.During the night last night, Ryli required oxygen and by 4am oxygen was not helping her.She felt very warm and was unresponsive.We did all we could but it just was not working for her.We rushed her in and when we got there (approx 3 minutes from our home), she was pretty blue.Her oxygen level was 74%.Hospital oxygen usually helps more than the canisters you receive at your home because the hospitals use pressure along with the oxygen and the pressure helps to force oxygen into her lungs. The doctor there wanted to transfer Ryli to Presbyterian/St.Lukes.Of course the hospital tried to get an IV started but Ryliís veins are way too tiny or just simply blown.Thank goodness for the Gtube as she is always well nourished. Ryli turned around and started doing really well so after a couple hours of observation, we were able to convince the doctor to let us take her home.She was given a 24-hour antibiotic shot in the ER and we will follow up in the morning with Ryliís Pediatrician.

 

Ryliís Private Duty Nursing

August 2006

Well, after having our nurse once a week for 7 months, we have decided to let her go so we can do this on our own.We really like our nurse but itís time for us to take on Ryli full time.We missed not having her that one night a week not being next to us.

This was probably a good thing because a week later, we received a phone call from the company we were usingóstating that after an audit, many patients were discharged including Ryli.So, we would have lost our nurse anyway.Right after Ryli received her trache last October (2005), we were so stressed out and hardly slept at all.It took us 3 months to get a nurse and by that time, we were already settled down and relaxed about the new life style we were going to have to get used to again.

 

Kennedy Krieger / Johns Hopkins

July 2006

Again, the ball has been dropped.We have been promised that this would not happen again but it did.The wrong Patient Financial Services group with Kennedy Krieger has been working on Ryliís case.So, back to square one.In the meantime, we have contacted Ryliís Neurologist at Childrenís Hospital to get a Muscle Test done and to get her back to Genetics for more testing.

 

Ryliís new glasses

June 15, 2006

Ryli had her bi-yearly Ophthalmology appointment with Dr.Bateman at Childrenís Hospital.They did some visual testing, light tests and measured her eyes.Then they dilated her eyes and did the same tests.After the Resident there did all the tests, she said that Ryli was near sighted.She said that glasses would help eyes like this but would not be worth it for a child like Ryli.After biting my tongue to where I thought I could possibly bite it completely off, the eye doctor came in and did all the same tests over.She verified that Ryli was in-fact near sighted and would be given a prescription for glasses immediately.She is hoping that this will be the right strength for Ryli and will open up a new world for her.She also strongly advised that we go back to Genetics and demand more testing as more and more kids with Infantile Spasms have been given diagnoses lately within the past year.We will wait to get more testing from Genetics at Johns Hopkins (which is actually still in the works as I get updated calls from them letting me know that they are still pulling a team together).Ryliís picture with her sporting her new glasses is in the gallery.Take a look.

 

We have received 3 copies of the same poem from people who love our little Ryli.It has touched so many people and we thought we would share it with you all:

Heavenís Very Special Child

A meeting was held quite far from Earth

It was time again for another birth.

Said the Angels to the Lord aboveó

This special child will need much love.

Her progress may be very slow

Accomplishment she may not show.

And sheíll require extra care

From the folks she meets down there.

She may not run or laugh or play

Her thoughts may seem quite far away

So many times she will be labeled

ídifferent,í Ďhelplessí and Ďdisabled.í

So, letís be careful where sheís sent.

We want her life to be content.

Please, Lord, find the parents who

Will do a special job for you.

They will not realize right away

The leading role they are asked to play.

But with this child sent from above

Comes stronger faith, and richer love.

And soon theyíll know the privilege given

In caring for their gift from heaven.

Their precious charge, so meek and mild

Is heavenís very special child.

By: Edna Massimilla

 

Ryliís Shriner Appointment

June 2nd, 2006

Ryli had her follow up appointment with the Shrinerís here in Denver.She still has flexibility in her spine and hips.With heavy use of her TLSO back brace, we can buy quite a bit of time before having to have spinal surgery.The downfalls of having spinal surgery at a young age is that the spine would not grow anymore. Since her torso could not grow after surgery, there would be no room for her lungs to grow and expand.Surgery for Ryli will hopefully be a long time from now.The only reason Ryli would need surgery once her spine has no flexibility is breathing difficulties.

The Shrinerís will follow Ryliís growth, curve and hips/ankles carefully in Denver when they are here.

Ryli will continue using her Hard TLSO and the Ankle/Foot orthotics that Dave Nalder with ďDynamic PossibilitiesĒ have made for her and was highly approved by the Shrinerís.

 

NAET

May 11th, 2006

Well, just as most Therapists and Doctors, her NAET therapist doesnít feel he is able to help Ryli and wishes her luck with her future.Chicken.

I thank all of the Therapists and Doctors who have stuck around to help our little girl and mostly, I thank you all for your positive thoughts, your hopes/dreams for her and your prayers.

 

Ryliís New AFOís and another TLSO

May 8th, 2006

We eventually want to get Ryli into a Gait Trainer or Pony Walker so she can be upright to weight bare on her legs and hopefully move around.In order to do this, we had to get her some AFOís (Ankle/Foot Orthotics) made.When Ryli tries to weight bare, her ankles twist outward.The AFOís are plastic that covers her foot to mid calf.We went back to Dave Nalder for these and, well, Ryli grew quite a bit so Ken Galen and Dave Nalder (Dynamic Possibilities) had to make her a new TLSO (back brace for scoliosis).Both of them fit perfectly and do not rub her.She is not minding all the hours wearing them at all.See her pics in the Gallery

 

Nambudripadís Allergy Elimination Technique (NAET)

May 4th, 2006

Even though Ryli has tested negative in the past for Allergies, we know that she has them.Especially now, her eyes are always goopy, she sneezes and coughs quite a bit throughout the day.She definitely has an allergy towards Metal since she blisters up when itís on her skin for a few hours.Ryli is now seeing an Acupuncturist for Acupressure in Evergreen for treatments to help eliminate her reactions to certain foods/environment/metals etcÖNAET is a bizarre system of diagnosis and treatment based on the notion that allergies are caused by ďenergy blockageĒ that can be diagnosed with muscle-testing and permanently cured with acupressure and/or acupuncture treatments.NAET treatments are completely natural, pain free, very effective, and generally long-lasting.Treatments can be done without needles and through a surrogate for infants and children.Weíll see how this goes for our girl.

 

Ryli Giggles

April 27th, 2006

Tonight, Daddy was playing Scooby-Doo voices with big brother Ryan.They were playing around and laughing.I looked at Ryli, she had big eyes and a big smile on her face and thenóa big exhaled push from her tummy.Thatís right, a giggle.Although since she has the trache, you could not hear her giggle but it was there and since we know our girl very well, we understood how happy she was at that moment.

 

Johns Hopkins & Kennedy Krieger

April 2006

After months and months of trying to get Ryli to Johns Hopkinsólooks like itís going to happen soon.Johns Hopkins Neurology Department is across the street in a Hospital called Kennedy Krieger.Well, once again, Kennedy Krieger is an Out of Network hospital with our Insurance Company.Weíve worked pretty hard with our Insurance Company and our ďNetwork GapĒ appeal was finally approved.Our Insurance Company will pay Kennedy Krieger as In Network for this one trip only.However, any duplicated procedure will not be covered and some procedures and lab work may not be paid out but the majority of this event should be covered.

 

Ryliís Airway Clearance Vest

March 29th 2006

We received a call from our Insurance Company indicating that our appeal in getting Ryliís Vest paid was approved.Ryliís case manager was a little surprised with the results but happy for us.Whew, thatís one less thing to worry about.

 

What a Night

March 7th & 8th, 2006

Another scare tonight.Ryli was coughing up some blood through her trache.This started about 7pm.She coughed up a little more at about 9pm.I was going to rush her into the Emergency Room but our nurse was already pulling up in our driveway for her 10-hour shift.She had me call the Swedish ER to see what their take on this was.The ER nurse said to just keep an eye on it and make sure that she is not coughing up clots.Ryliís nurse is under the impression that the end of her trache may have rubbed a spot raw in her airway.Ryliís night wasnít so bad actually. Our Tuesday night nurse said that there was no more blood but that Ryli spent the night on Oxygen because she was holding at 85 percent oxygen level, which is not too good.This morning, I have taken her off of her oxygen and it seems that she is holding at 89-94 percent and still blood coming from her trache site, needless to say, this is not going to be a great day.I have cancelled all of Ryliís physical appointments for the remainder of this week since we have to keep the trache from moving around to allow the site to possibly heal. My take on this is that she has developed a Granuloma (a small area of inflammation) that is in her airway, which is not allowing her to receive enough oxygen. She has a follow up with her ENT Dr.Werle later on today so weíll see what he thinks.

Update:Ryli had her appointment with her ENT who performed her Tracheotomy surgery.Everything went well.He scoped down her trache and found a little bleeding/lesion right where her lungs branch off.The bleeding should stop on itís own (hopefully) as long as clots are not seen.Dr.Werle gave Ryli an antibiotic since her oxygen levels keep dropping which may be a sign of an infection starting. Then we went down stairs to Ryliís Pulmonary. They did a lung Xray and a Trache culture (again) to rule out Pneumonia or infections.Waiting for those results.

Update:The day after Ryliís ENT and Pulmonary visits, she woke up sick.No fever, just goopy eyes, a lot more mucus and sleepy.She is doing much better this morning (3-12-06).

 

Ryliís Two!

February 19th 2006

Another wonderful year with the sweetest, strongest little girl there is to know.We celebrated Ryliís 2nd birthday with just a few family and friends the day before her real birthday.With just 31 guests, it was a much smaller party than last year.So much love for our little girl under one roof, amazing.Take a peek at Ryliís Gallery for birthday photos.

 

Johns Hopkins Update

Tuesday, February 14th **Happy Valentineís Day**

Today I got a phone call from someone at Johns Hopkins.He is getting together a slew of doctors from different departments and once that is done, we will be going up there for a weeks stay while all sorts of tests are run on Ryli.He assured me that things will get moving now and Ryli will be a patient down there but it will take awhile to get things rounded up and all the doctors to figure out what tests they need to have ready to run once Ryli is down there.Finally, itís moving along.We canít wait.

 

EKG

Monday, February 13th

Ryli sleeps with her PulseOx on during the nights to monitor her Oxygen Levels and Heart Rate.At 1am and 2:30am this morning, Ryliís heart rate dropped to the 30ís.For Ryliís age, the lowest they want her heart rate to drop is 60ís.Ryliís Pulmonary Doctor thinks that since it happened twice during the night and did not continue, that it may be a Third Degree Heart Block and an EKG was necessary.At 12:00pm, Ryli went to Littleton Adventist Hospital to have her EKG done.We will wait a few days for the results.

The results are inÖRyliís Pediatrician, Dr.DiMaria called us tonight about 6:30pm.He said that the EKG reading shows everything to be normalÖHe is hoping that the Pulse Ox gave incorrect numbers and that maybe it was reading every other heart beat.This would make a little sense since Ryliís Heart rate drops way down to 60ís occasionally when she falls into a very deep sleep, so every other heart beat would read at 30 rate which is what we were getting early this morning.I hope this is true but her Pediatrician said to call Ryliís pulmonary specialist to have her order a more thorough Pulse Ox.One that will chart Ryliís heart wave.You donít have to ask me twice, Iím calling at 8am tomorrow morning.

 

Surgery Again?

Wednesday, February 8th

We had an appointment today to see Dr. Blinman (Ryliís GI surgeon).Ryliís tests did show that she can digest, but as everything else Ryli doesóit painfully slow.Not slow enough to throw her into surgery right away but slow enough to try things to help her out.There were 3 things we could do for Ryli:

1)    Just let her gag.Since Ryli cannot handle her secretions and may still be possibly aspirating her secretionsóthis was really not an option as Ryliís gagging makes her salivate a ton.Also, gagging could undo the Nissen Fundoplasty that was surgically done New Years Eve 2004.

2)    Start her on Erythromycin.A very small amount.A side effect to Erythromycin is Hunger.Hunger because the Antibiotic makes you digest food faster. We would have to monitor her gags with this to see if they lesson.

3)    Surgery.How Ryliís system should be working is:Food enters the stomach.First, the stomach must store the food and liquid.By doing this, it requires the muscle of the upper part of the stomach to relax and accept large volumes of material.Second, the stomachís job is to mix up the food and digestive juice produced by the stomach.The lower part of the stomach mixes these materials by its muscle action.Third, the stomach is to empty itís contents slowly into the small intestine.Hereís where Ryliís systems not really working like it should.The muscle action to move the food through isnít as strong enough or fast enough to work properly.There would be an oval sort of incision made to where that muscle that should be pushing food through will be made to shape like an oval instead of circle so it would hopefully be easier for the muscle to work.

So, if the Erythromycin does infact reduce Ryliís retching/gagging then chances of this surgery working for Ryli would be pretty good.However, sometimes this surgery is performed and the gagging is still there.Itís all dependent on the child and the childís underlying condition.Ryliís big issues are brain/neurological so the surgery may not help.

If the Erythromycin does not work, weíll see Dr. Blinman again to talk about other things, or, letting her gag.

 

Finally a Nurse

We finally received a nurse for Ryli.ANDósheís good.She also faced challenges with her daughter growing up and knows what our family is going through and has gone through.She is very positive and helps reassure Mommy and Daddy that their little girl is going to be ok.She comes every Tuesday night from 9pm-7am.Thank God.

 

Nuclear Emptying Study

Friday, January 27th, 2006

Ryli will be given Nuclear Medicine mixed in with her formula.The Nuclear Medicine/Radiation given is such a small amount (to get the best pictures of the study) that we are told it does not pose any great risk.The dose given is by Ryliís size and weight.Ryli will lay flat after being given the medicine (by Gtube) and Xray pictures taken over a 75-minute period will show if the stomach is emptying as it should. We should get the results early next week.

 

Ryliís Upper GI Scope Update

Friday, January 20th, 2006

Ryli received her update from Dr.Blinman regarding her Upper GI Test.Her Nissen Fundoplasty is still intact.She will not have to undergo another surgery for this.The study showed Ryli to be an extremely slow digester.She will have another study done Friday January 27th.It is called a Nuclear GI Emptying study.She will undergo an hour of Xrays with the Nuclear Barium again.It will measure amounts left in her tummy and amounts moving into her digestive tract.

 

Ryliís Occupational Therapy and Physical Therapy

May 2004 to Present

Ryli has had the same Occupational Therapist and Physical Therapist treating her once a week each for almost 2 years in our home.Denise Nelson and Cindy Collins have worked so hard on keeping Ryliís Range of Motion going, helpingher arms, stomach, legs, back & neck muscles to work and get stronger.They are a huge source of information when I need and a huge support system for our family.

Thank You both

 

Ryliís Cranio Sacral Therapy

January 2006

Ryli has been seeing Galen Colton with Holistic Hands Massage Therapy for some Cranio sacral.She has been going to Galen since last November, 2005.Since being treated by him, Doug and I notice that her drifted apart eyes have come together quite a few times so far.Her eyes are far apart and when they are together, she looks like sheís cross eyed. Cranio-Sacral Therapy involves a very gentle touch of the practitionerís hands, both for diagnosis and for treatment. This light contact may be taken up on the cranium, the sacrum or any other part of the body as appropriate. Through light touch, the practitioner is able to pick up subtle patterns of motion within the body - rhythms, pulls, pulsations - emanating from deep within the core structures of the body. These movements are a reflection of Cranio-Sacral motion which is expressed in all tissues throughout the body. By responding appropriately to these patterns - in other words by gently allowing the subtle movements deep within the body to unwind themselves - the Cranio-Sacral Therapist can enable and facilitate the release of Cranio-Sacral restrictions. Release at these profound regulatory levels in turn enables the release of disease conditions throughout the body.This is a major ďfeel goodĒ appointment for Ryli. Once she hits her car seat, sheís out.

 

Ryliís Upper GI Scope

Tuesday, January 17th, 2006

Ryli was given an Upper GI study today.She was injected with barium through her Gtube. This will determine if Ryliís Nissen Fundoplasty should be re-done or if Ryliís retching might be brought on by just being a slow digester.Well, it was very obvious that she is a slow digester.We sat for about an hour after the barium was injected and it literally just sat in her stomach for almost an hour before trying to move to her intestine.Dr. Blinmanís concern is that kids with Neurological issues tend to break out of their Nissen quite often as the body does not accept the procedure and will not heal.If Dr. Blinman does not find anything wrong with Ryliís Upper GI, he will set a surgery date to have her Nissen re-done.This procedure should be a 1-night stay at P/SL.He will use Ryliís previous scars to repeat the procedure.

 

Ryliís trip to Shrinerís

Sunday January 15th thru January 16th, 2006

Ryli, Mommy and Daddy left Denver Sunday afternoon for an appointment in Salt Lake City, UT Monday morning where she met up with Wade Johns (RN) a Care Coordinator.X-rays of Ryliís spine was taken.Dr. James Ogilvie compared the X-ray they took of Ryli out of her harness and the X-ray we brought from Childrenís Hospital of Denver of Ryliís spine in the harness that Ken Galin and Dave Nalder made for Ryli.The curve that the Shrinerís saw without the X-ray was about 50 degrees.Ryliís spine curvature in the harness is about 27-29 degrees.I stated that Ryliís Orthopedic Surgeon, Dr. Chang was a little concerned that the harness could be correcting her too much, Dr. Ogilvie stated that it is a very good corrective harness and to stick with it.There is not a whole lot that can be done for Ryliís spine at the moment as her spine still has flexibility and it is not only Scoliosis but it is Neuromuscular Scoliosis meaning that Ryli does not utilize the muscles that run up and down her spine so there is nothing keeping Ryliís spine in place.As we hear this all the time, Dr. Ogilvie stated that without a diagnosis for Ryliís condition, it is hard to make a treatment plan for her spinal issues.

Now that Ryliís Initial Evaluation has been done in SLC Utah, she can now be seen when the Shrinerís are here in Denver @ P/SL once every other month.She has a follow up appointment this summer in June to make sure that her harness continues to correct her curve.See Ryliís Gallery for Shriner pictures.

 

Ryliís Sleep Study Results

Friday January 13th, 2006

Ryliís Pulmonary Specialist called, Dr.Kahn.She still does not see a need for oxygen.Ryliís results of the study showed that her lowest de-sat was 88 (oxygen level) of which it did not stay there long enough.Her highest was 94.Before the trache, her highest was 100% oxygen, however, we were told by a Respiratory Therapist that sats drop once a tracheotomy is in place.We are pretty pleased with 94 being her highest.Plus stats drop once you are sleeping so her stats are higher than 94 when sheís awake.

 

Extended Newborn Screening

Thursday January 12th, 2006

I ordered an Extended Newborn Screening kit to test Ryli for over more than 50 inherited disorders as well as many lesser known disorders.Her Pediatrician called me and said that the information they received back showed that Ryli tested Negative for all.For Ryliís lab and tests, click here.

 

 

Another Scope

Wednesday January 11th, 2006

Ryli was seen by her old GI doctor, Dr.Blinman.He is the doctor who placed Ryliís first feeding tube and performed her Nissen Fundoplasty over a year ago Last New Years Eve.During a scope December 8th, 2005, another GI doctor found that Ryliís Nissen was infact, undone.

Ryli is scheduled next Tuesday for another Scope but this scope will be of her Upper GI.During the scope, if they find that they may be able to control Ryliís gagging/aspirating without another surgery, they will do so but if they find that nothing else is going on, they will schedule Ryli for a Nissen re-do surgery.

 

New Harness

Tuesday January 10th, 2006

Ryli had 2 spine Xrays taken today at Childrenís Hospital to see how her spine is sitting in her new harness.I called her Orthopedic Surgeon, Dr. Chang, to have him take a look at them and call me with the new curvature degree.He did.He said that the harness is correcting her a lot.He said that her curvature inside the brace is sitting at 29 degrees.I didnít think that was a lot but he did crunch numbers from the last Xray from last month and told me that her spine is now at a 69 degree curve.Ryli seeís her Chiropractor, Dr.Leavitt tomorrow and I have sent the Xray off to Dave Nalder.Weíll see what they think.

 

 

Ryli Had another Sleep Study

Tuesday January 10th, 2006

Ryliís Pulmonary Doctor, Dr. Kahn, wanted another sleep study performed tonight to monitor her sleep Apnea and stats. The good part is that it will be done here at home and not at Childrenís Hospital again.They needed at least 9 hours of her actually sleeping which I told them that she usually wakes around 2am or 3am for a couple hours.However, she actually slept her 9 hours.She was out at 9pm and woke at 6:30am.Also, every time I woke, I looked at her PulseOx and the numbers looked great every time.The Respiratory Therapist is coming by at 7:30am on the 11th to pick up the Pulse Ox to print the information for Ryliís Pulmonary Specialist.Iíd like to say that she did wonderful, but Iíve let my guard down too many times.Iíll just wait for the phone call again.

 

Ryli Has Another New Harness

Wednesday January 4th, 2006

Ryli has been seeing a Wonderful Chiropractor a few times a week.Dr. Jason Leavittís words still stick in my mind.He said ďI will never give up on RyliĒ and he hasnít.Ryli has made improvements since sheís been seeing Dr.Leavitt.When sheís on her tummy, she can actually pucker her bottom up during treatment and she gets pretty active.Also, she is ALWAYS sucking on her pacifier since her treatments and loudly.We love it. He is constantly brainstorming ideas.Dr. Leavitt had a Colleague come by to take a look at Ryli.This colleagueís name is Dave Nalder.He is a Certified Prosthetic & Orthotist. He saw Ryli and called me the next day.He said that he also contacted a colleague, Ken Galen, down in Colorado Springs and they both wanted to make a harness for Ryli, which would probably correct her spine from 47.5 degrees to 0 or in the single digits.Well, Ryli was fitted very thoroughly and received her new harness within 1 week.It actually is over correcting her curvature so we will see how it does for her but she does not seem to mind it one bit. Dave and Ken both said that if our Insurance Company did not cover the new harness then we should just consider it a gift. These are people who are confident they can and will make a difference.See the gallery for a picture of Ryli in her new harness.

 

Avalanche Ticket Raffle Drawing!

Sunday December 18th, 2005

Lisa drew the winning raffle ticket at a family gathering today.The winner was ticket number 224, purchased by S. Jones Ė Congratulations!

Thanks to everyone who participated!There were over 250 raffle tickets sold Ė A great help for Ryliís Hope!!!

 

Shriners Hospital Visit

Monday December 12th, 2005

Ryli has been scheduled for her visit to Shriners Hospital in Utah.They provide care for children with orthopedic issues at zero cost to the parents.They will fly a child with orthopedic issues and one parent to their hospital for evaluation, surgery, etc.This will not help find a neurological diagnosis for Ryli, but it should be great help for Ryliís spinal issues.Her appointment is 9:00am on Monday January 16th, 2006.We are looking into frequent flyer miles that friends and family have donated, so that both of us can go with Ryli (and maybe even Ryan).

 

Mountain Academy of Martial Arts Helps Ryli!

Saturday December 10th, 2005

I have been on a ďsabbaticalĒ from teaching martial arts since Ryli had her tracheotomy surgery, and unbeknownst to me, my fellow instructors, students and studentís families had been planning a special day for Ryli during the December 10th testing!Master Rankin, Master Bishop, Mr. Feagans, Mr. Hargrave and the rest of the instructors at the school had decided to donate ALL of the testing fees to Ryliís Hope!Additionally, Mrs.Jenkins, Mrs Dawson, Mrs. Rankin and others helped set up a wonderful raffle and tables to sell many of the fundraising items for Ryliís Hope!Many people participated in the raffles and other fundraisers.It was an amazingly successful day for Ryliís Hope, raising nearly $2,000!We were very surprised, and very honored!Thanks so much Mountain Academy!

 

Home Nursing Help!

Thursday December 8th, 2005

When Ryli had her tracheotomy surgery in October, we were assured that we would have help with nursing care at home.We were happy to hear that it would be available, but were doubtful that weíd need it Ė weíve been able to handle everything else so far.Well, when we got home with Ryli, we knew that we would need help. 24 hours a day of constant attention is simply too much, even for Super-mom.We have been working hard to get help since the day we got home, and it looks like we are finally going to get some help tonight!Our nurse is planning to show up tonight to help us get some sleep while she attends to Ryliís needs!

 

Endoscopy with Dr. Stathos

Thursday December 8th, 2005

Ryli had her endoscopy today.It went relatively well, everything seems pretty clear inside the tummy and small intestine.Dr. Stathos was able to place her new feeding tube, which can feed into her tummy, or we can use a secondary port that feeds directly into her small intestine.The goal is to reduce her retching.On the down side, Dr. Stathos noticed that her Nissen Fundoplasty has come loose.You may remember that the nissen is when they wrapped a bit of her stomach around her esophagus to help prevent refluxing.Now she is refluxing a little, and gagging a lot.I suppose this means that she will have another liproscopic surgery to correct it, but weíll let Dr. Stathos make that call - we see him again in a few days.

 

Endoscopy Postponed

Thursday December 1st, 2005

Ryli is not quite feeling well today, so Dr. Stathos is postponing her endoscopy until next week.Ryli is on antibiotics starting today, so hopefully she will be feeling better by then.Mom will be seeing her doctor today too, as she has not been feeling well.Tis the season!

 

Gag Order

Tuesday November 22nd, 2005

Since early October, Ryli has been retching (gagging) mostly when she is eating but at times, just because.During her stay at P/SL this last October, they took an X-ray with Dye to check to see if Ryliís Nissen Fundoplasty was loose.The X-ray showed that all was good.However, the retching is pretty constant now and on 11-21-05, Ryli was gagging during a feed and has milk in her mouth which shows that she is refluxing somehow.Her GI doctor, Dr. Stathos will be performing an endoscopy 12-01-05 under anesthesia to check out what is going on.During this study, Ryli may need to have her G-tube replaced with another G-tube that will allow her to be fed distally, which is through her intestine vs. her stomach. Not something that we are wanting for Ryli but weíll have to see if there is anything going on in her. ††Wish her luck.

Also, see the gallery to check out Ryli sporting her new ear piercing that she received 11-18-05.

Ryliís News Video

Tuesday November 22nd, 2005

Did you miss Ryliís appearance on Channel 7?Now you can watch it, just click the link below.The file is over 4MB, so a high-speed Internet connection is recommended.

Ryli on Channel 7

For best results, please right click the link, and choose ďSave Target AsĒ to save the file to your computer before playing it.

Donation link has been taken off.Thank You

 

Ryliís Airway Clearance Vest Denied

November 8, 2005

Well, we talked to our new Case Manager with our Insurance Company.It appears that they will not pay for the $16,000.00 Airway Clearance Vest that Ryli needs to have to keep her salivations in her lungs moving to avoid Pneumonia reoccurrence.I told them that Ryli needed it and got the response of ďIím sure the vest company will work something outĒ.I told her that we couldnít afford the payments on the vest because there is a lot financially that we are doing for Ryli that is not covered by our Insurance Company.I told her that I could not believe that they will not accept appeals or anything when this device is a life saving device.Long story short, their not covering it but, we canít afford it, itís medically necessary and ordered for us while Ryli was in ICU and weíre not giving it back so our Insurance company and the vest company will have to work something out amongst themselves.

 

KMGH Channel 7 News!

Wednesday November 9th, 2005

Today we heard that KMGH wants to do a story about Ryli!They are coming over to interview us tomorrow, and they plan to air her story on the 10:00pm news on Thursday November 10th!We are so nervous about it, but hopefully it will help Ryli!

 

October Hospital Visit

Saturday October 22nd, 2005 to November 2nd, 2005

Ryli visited P/SL and had her tracheotomy surgery.Please click here for more detail.

 

Ryliís Hope on rylishope.org!

Monday October 17th, 2005

We have obtained a domain name to make getting to Ryliís hope easier!Now you can just type in ďrylishope.orgĒ in your browser, and youíll get to Ryliís Hope!It still redirects to our Comcast page, but now itís easier to remember, and easier to get here!

 

Spine

Monday October 17th, 2005

Ryli was ďcastedĒ a month ago to make Ryliís Soft Boston TLSO spine splint.Ryliís spine curvature is 47.5 degrees, which requires surgery.They splinted her spine hoping it would not worsen over the next year, which is when her orthopedic surgeon wants to do surgery.Her splint is Lavender with Butterflies all over it.Check out Ryliís ďGalleryĒ for Ryli in her new splint.

 

Johns Hopkins & Ryliís Hope!
Thursday October 13th, 2005
Lisa received a letter from Johns Hopkins Ė the #1 Ranked Hospital in the country.They have accepted Ryli as a patient!Great news!The trouble is that our Insurance has NO ďOut of NetworkĒ benefits, which means that all of these expenses will come out of pocket L

Oxygen Continued
Wednesday October 12th, 2005
Dr. Kahn called us at 8:00pm to give us the results of the sleep study that was done on September 29th.Although Ryliís breathing pattern is abnormal (immature), her oxygen saturation maintained levels in the high 80s to 90s, and her carbon dioxide maintained average levels as well.Even though when her oxygen was turned on (near the end of the sleep study), her levels maintained levels in the high 90s.What does it all mean?Well, she is not going to be put on oxygen full-time!

Swallow Specialist
Thursday October 6th, 2005
We brought Ryli in to see Kay Toomey - a specialist for swallowing. She and her team did an evaluation of Ryli and how to better help her overcome her difficulties with swallowing. Ryli's neurological challenges are at the root of this problem, and will have to be overcome before she can eat successfully. We are very thankful for her g-tube!

Laughter!
Sunday October 2nd, 2005
Ryli decided to give us a treat and laughed several times for us. Daddy also got to see a HUGE smile!!! We just need a faster camera to catch them! We got out the video camera and got the tail end of it though.

Oxygen
Thursday September 29th, 2005
Ryli's blood test came out normal (about 87), just as we suspected. Bad news at the pulmonary doctor (Kahn) though. She's afraid that Ryli is holding her breath too much. Lisa spent the night at Children's Hospital so that they could do an extensive sleep study on her. Dr. Kahn ordered oxygen (for our home) anyway, just to be on the safe side. More details on this to follow.

Diabetes?
Wednesday September 28th, 2005
Ryli decided to scare us again with another trip to the hospital! She sounded very clear, but went very pale and unresponsive. After a couple of hours in the ER at Swedish she was doing well again. Blood tests showed high sugar levels in her blood - a possible indication of diabetes. They were careful not to label it yet, but we'll be following up on it, beginning with appointments tomorrow.

Doing well!
Sunday September 18th, 2005
Ryli is still doing well. She was given steroids to be used through her nebulizer to help keep her lungs clear and strong. She's been really busy with appointments almost daily since her discharge from Swedish, but we've managed to capture her 18-month picture together with big brother Ryan for his 3-year picture. Check it out in the Gallery.Mommy does such a great job with our little old camera!


Follow-up Appointments
Tuesday August 29th, 2005 - Ongoing...
Wow! Ryli is super busy now with follow up appointments with Dr. Kahn (Pulmonary), Dr. Pashley (ENT), Dr. Blinman's Office (G-Tube), and Dr. DiMaria (her Pediatrician). Not to mention her regular therapies. Everybody wants to make sure that the proper care is given for Ryli following her close call.

Ryli Home!
Monday August 29th, 2005
Ryli returned home from Swedish Monday night. As usual, she is making strides that may or may not be related to the hospital stay. We are enjoying more emotional response from her lately! More pouty faces, but more smiles too!

August Hospitalization
August 13th through August 29th, 2005
Ryli had another close call, and spent 16 days at Swedish Medical Center. Click here for details.