I have been dreading writing this post for about a month now. Sometimes medical choices are just not good no matter which choice you make and we are at one of those cross-roads.
Here is the back-story...(it's long...stick with me)
When she was 6 months old she came down with airborne infant botulism. It had nothing to do with her having disabilities, it was just "LUCKY".
You know how they tell you not to give infants under 1 year old honey? Well it's because of botulism. That would be food borne botulism.
And you know how women get botox injected in their faces to help with wrinkles and lines. That is botulism. Botox is botulism.
Botulism works by paralyzing the nerve endings. So in the case of botox they are paralyzing those muscles so they won't move.
Airborne botulism is something you breathe in. Botulism is everywhere in the world in the soil. Most of the time it is not a problem. But sometimes in a dry dusty environment (like Utah) babies can breathe it in and they become paralyzed. This happens only to babies under 6 months and it happens when they transition from bottle or breast to eating from a spoon. There are 100 cases of Infant Airborne Botulism in the US per year and 25 of those are treated at Primary Children's.
Ellie was 6 months and we had just fed her her first babyfood from a spoon a day or 2 before.
It was New Years Day 2003 and Ellie wouldn't wake up. She wouldn't eat and she had no wet diapers. We tried playing with her, giving her a bath everything we could think of and total zonkers. My (Mikael's) Mom and I drove to Primary Children's Hospital Emergency Room.
The Dr. in the Emergency Room mentioned Botulism in passing but was running a multitude of tests. They couldn't figure out what was wrong right away so they admitted her to the floor. This was her first hospitalization.
On day 3 of being inpatient she coded (stopped breathing). IT WAS TERRIFYING! There were almost instantly at least 20 Dr.'s and nurses in her room talking and pushing buttons and doing all they could. She was intubated (breathing tube down throat). As soon as they were able they rushed her to the ICU.
The Dr.'s thought that perhaps it was her hydrocephalus (the extra fluid in her brain) causing extra pressure. So they wanted to do a bedside EVD (External Ventricular Drain). They drill through the skull and brain tissue and place a straw into the fluid to drain some of it. They are also able to monitor and see how much pressure there is in the brain.
They had Jason and I step into the waiting room as they did the procedure. There is a really sweet story about this. They had to shave part of her head to do the procedure. One of the residents scooped up her shaved hair from the floor and put it in a biohazard baggie and saved it for us. It was very thoughtful. It was her first haircut!
After doing the EVD they did not think this was the problem because the fluid was not under a lot of pressure.
They ran lots of tests including one testing for botulism. The botulism test is a very strange one. You must collect a stool sample and inject the stool into a rat. If the rat dies within 3 days you have botulism. This was a difficult test to run becuase she was not pooping. Well at 3 days Ellie's rat was still alive, but it died after that. So that was confusing to the Dr.'s
There is a medicine you can give to someone with botulism. It makes the effects of botulism shorter. You must give the medicine within 3 days of contracting the illness and they helicopter the medicine in from California. Well, because her rat didn't die within 3 days she was not given the medicine.
The Dr.'s would never 100% say she had botulism, but they also never came up with a better answer, so I say she had botulism.
You breathe in the botulism spores from soil and they multiply in your intestines and travel throughout your blood to all of your nerve endings and block the electrical signals that your nerves are trying to send, thereby paralyzing you. She couldn't eat, breathe, move, open her eyes, poop, pee, ANYTHING! The effects of botulism are that you are completely paralyzed.
Airborne Infant Botulism we were told lasts anywhere from 10 days to 1 year. Ellie's lasted longer. The botulism does not leave your body, you just have to wait for your body to grow new nerve endings.
Because she was completely paralyzed she was on life support. She had the breathing tube in her mouth/throat connected to a ventilator which was breathing for her. She had a feeding tube through her nose into her belly giving her nutrition.
After being in this situation in ICU for three weeks and having no additional answers and not a lot of improvement in her medical condition the Dr.'s decided it was time for us to go home. They told us that it is not good to have a breathing tube in your mouth and throat for longer than 3 weeks (it causes damage) and that we couldn't go home while being intubated (breathing tube). So they wanted to give her a trach. This is a hole they cut in your throat and a tube is inserted into your trachea and you breathe through the hole/tube. I DID NOT WANT TO DO THIS.
They told me she would get better in 10 days to 1 year. I was hoping that she would start improving any day. After several days of them trying to convince me (AKA wearing me down) and sending in many many specialists all telling me that I needed to do this. Jason and I finally consented.
She got the following surgeries done (these were her first surgeries)
-a trach
-ear tubes (which she needed anyway)
-gtube in her belly (tube to feed her right into her belly) (because remember she is paralyzed and can't eat),
-nissen where they tighten the top of your stomach to prevent reflux (because once again she is paralyzed and won't be able to keep the food in her stomach without refluxing)
When you have a child with a trach you must have a trained adult awake and with them at all times. This is their only airway and if something is wrong it must be corrected immediately.
This meant that we would need nurses to come in every night and watch her so we could sleep for a few hours. If a nurse couldn't come, Jason or I had to stay awake with her.
Jason and I had to have extensive training on how to take care of her. She would be coming home with a trach and a ventilator. We knew we would need help, so we asked our parents to be trained also and they did. Our parents are awesome! What grandparents would do that?
While waiting for nursing to be set up she had to go to South Davis Hospital for 3 weeks. It was a scary and sad place. I think it was probably only scary and sad because I was in a scary and sad situation. Not the actual facility or nurses or Dr. But those few months were the hardest of my life to that point. South Davis helped us get our first adapted stroller with a special tray for the ventilator
We came home by ambulance on Mar 1, 2003. Terry the RT and Sunny the nurse from Homecare were there to meet us. They helped us get situated and brought us a ton of supplies that we would be needing. They were so kind and helpful.
It was hard. We had a 2 year old boy and now suddenly an extremely complicated little baby. Our life got instantly hard.
If I didn't get a shower in before the nurse left, I had to bring Ellie and the ventilator into the bathroom with me and shower with my head poking out of the shower curtain every few seconds to check on her. We had a little camry that was our family car. Jason would drive. In the backseat was Ellie in her carseat and our son in his carseat with me squished in the middle while the ventilator was buckled into the front seat and the stroller folded up in the trunk. At my feet was Ellie's emergency supplies (go bag) and suction.
She had the ventilator for about a year and the trach until Aug 2004. (Much longer than the promised 1 year...it was 1 year and 8 months).
I know that was a really long back-story...but it is needed before I tell you the current story.
After getting off the vent and trach she went almost immediately on bipap at night. This is a mask you wear on your face connected to a machine that delivers breaths of air. She used bipap at night probably since she was 2 or 3 years old.
Starting in the Fall of 2015 she started having pneumonia every 6 weeks involving hospitalizations and IV antibiotics. It was bad. She had the occasional pneumonia before, but it was increasing rapidly in frequency. This was bad because #1) people die from pneumonia and she had been close before #2) with so many antibiotics she could develop antibiotic resistance and get a super bug that nothing could fight off. #3) it was really hard on our kids and our marriage.
I spoke with her pulmonologist and suggested that the bipap was pushing the secretions down deeper into her lungs where she wasn't strong enough to cough them out. She said it was possible but the sleep studies showed that she still needed bipap. We tried adjusting the bipap settings. And finally I decided on my own (without Dr. permission) to stop using bipap in fall of 2015.
Once we stopped bipap she did not have a single pneumonia or hospitalization for about 18 months. It proved that my theory was correct. She did really well for quite a while. But the last few months have proven difficult. She is now needing oxygen almost continually and sounds congested all the time. She never previously needed o2 during the day unless she was sick.
I met with pulmonology again about a month ago. We decided yes, the bipap had been pushing secretions down and causing pneumonia. And we thought that now her lungs were probably partially collapsed because they were never getting blown open by bipap. This would explain the increased ongoing need for o2. We decided to do a chest xray.
The xray indeed showed that the bottom lobes (bottom part) of her lungs were closed (collapsed).
I asked if the lungs are never getting open and are not getting o2, do they die. AKA...have we already done irrepairable damage? The pulmonologist said no. You can always blow them back open. whew!
But then the problem is, if we go back on bipap then we go back to pneumonia leading toward death. If we do nothing than her lungs continue to collapse, her breathing difficulties increase leading to death.
We brainstormed a lot of ideas including botox in the salivary glands, tying off salivary glands, meds to dry out secretions, lowering baclofen dosing. If we could not come up with a good solution, then we may need to get a trach and use a ventilator at night..
AHHHHHHHHHH...NOT A TRACH!!!!! It is hard. We know how hard it is. We want to explore all options before we once again feel forced in to a trach.
With the Dr. suggestion we decided to start doing bipap for an hour or 2 during the day while awake and sitting up. We were hoping that she might be able to control her secretions better if she was awake and sitting up. We started this about a week and a half to 2 weeks ago. We saw an immediate difference. She was now able to go some days without oxygen and just seemed to be doing better overall. Everyone agreed she was improving.
Which brings us to this weekend...NOT IMPROVING!
Last Thursday she seemed slightly congested. Friday both ears started draining. We started eardrops in both ears. Ear drainage stopped over the weekend, but congestion increased. Last night was really rough. I was up suctioning her most of the night. I couldn't keep sats above 91 (mostly much lower) even on 3 liters of oxygen and using every trick in the bag. I slept on her floor on a mattress.
This morning she was working a little harder to breathe. She was needing 4 liters of 02, her heartrate was elevated and her temp was low.
I decided at about 8:30 this morning that I needed to bring her to PCH Emergency Department. We got here at 10:30 AM. She met shock protocol (good and bad). Good because it gets Dr.'s and nurses and tests moving FAST! Bad because it means she is pretty sick.
The airways in her left lung are collapsed (adelectisis) and small non-specific patches on the right that could be a virus?!?!?! They found her positive for Human Metapneumo Virus. This could explain the ears draining and the increased o2 needs and congestion.
We are now in PICU. (Pediatric Intensive Care Unit). They have had to put her on bipap and high oxygen to keep her oxygen sats up. She has been awake however.
The thing I am worried about is we just started doing bipap 2 weeks ago and here we are in ICU. That could mean one step closer to a trach. Not happy. I would do it if we have to, but seriously not happy. THIS IS THE DREAD!
As for right now, she is doing ok. She has not gotten worse throughout the day (since getting bipap on). They did lower her o2 a bit, so I would say that is slightly improved.
I have seen her worse!
Blood pressure was low when we got to the hospital but came up with fluids. Her sodium is a bit low but trending up. Calcium was a bit low so they gave her some. White blood count is low, to be expected with the virus. She was also retaining CO2 (that you exhale), not good...but will hopefully improve with the bipap.
She also has bacteria in her urine.
They put her on antibiotics which should cover all of her ails! Thank goodness for modern medicine.
What a way to spend spring break. Ellie can say "I was away from home all of spring break at a hotel". We just won't mention that it was the "hotel on the hill!"
Tuesday, April 4, 2017
Update on UTI's
She was previously getting a lot of UTI's. so they put her on a prophylactic low dose antibiotic. She took it for a year or 2. Then we decided to try her off of it and she has done well. No infections. Yea!
Update on ear infections
She was getting lots and lots of ear infections. So much that we had scheduled a mastoidectomy where they remove the mastoid part of your ear inside your head. There is a 5% chance of hearing loss with this procedure, so they only do one ear at a time.
She ended up being sick when it was surgery day so we postponed.
Then she stopped getting such frequent ear infections. It was weird.
She has still been getting them off and on...but not every 6 weeks like it was previously.
She ended up being sick when it was surgery day so we postponed.
Then she stopped getting such frequent ear infections. It was weird.
She has still been getting them off and on...but not every 6 weeks like it was previously.
Update on Keto (Ketogenic) Diet
It is now April of 2017
It has been a LOOOOOOONG time since I have posted. Which is a good thing since I usually only post when she is inpatient. So therefore it means she hasn't been inpatient for a long time. (This is true).
So let's see...she started the Keto (ketogenic) diet for seizure control in Sept of 2015. We got up to the 4:1 ratio, which is the highest they go. It means 4 parts fat to 1 part combined carbs and protein.
It went well. For the first month she was SUPER smiley...the most I have ever seen in her life. Then that stopped and we couldn't get it back.
Seizures were fairly well controlled. Still a few now and then and worse when she was sick (to be expected). There were a few months this last fall when she was having a lot of unexplained seizures. But overall things were going pretty well.
During this last year she has had unexplained stomach bloating and feet swelling going on for 9-12 months now. To try and figure these things out I have been to the pediatrician (multiple times), pulmonology, urology, cardiology, comprehensive care, colorectal, GI and neurology. They all agree it exists, they just don't know what the problem is.
Finally I mentioned it to the dietitian (which I wasn't even going to mention it because it seemed irrelevant) she said she knew what the problem was. She said that she was getting too little protein. (even though her blood work looked fine). She said that because her calorie needs are so low to achieve the 4:1 ratio that her protein was really small.
So we decided to wean off of the keto diet to see if the swelling and bloating improve. If they do, then we know what the problem was. If they don't improve, then we have ruled it out at least.
So far we have stepped down from 4:1 to 3.5:1 to 3:1 to currently at 2:1. So this mean decreasing the fat and increasing the carbs and protein. Her seizures got really bad when stepping down and we had to add back in a seizure med (Keppra). And we have seen no improvement of the feet. Her stomach is slightly better (but we are also on a new bowel regiment.).
Seizure control with the keppra has been going well. I am seeing virtually no seizures most days.
It has been a LOOOOOOONG time since I have posted. Which is a good thing since I usually only post when she is inpatient. So therefore it means she hasn't been inpatient for a long time. (This is true).
So let's see...she started the Keto (ketogenic) diet for seizure control in Sept of 2015. We got up to the 4:1 ratio, which is the highest they go. It means 4 parts fat to 1 part combined carbs and protein.
It went well. For the first month she was SUPER smiley...the most I have ever seen in her life. Then that stopped and we couldn't get it back.
Seizures were fairly well controlled. Still a few now and then and worse when she was sick (to be expected). There were a few months this last fall when she was having a lot of unexplained seizures. But overall things were going pretty well.
During this last year she has had unexplained stomach bloating and feet swelling going on for 9-12 months now. To try and figure these things out I have been to the pediatrician (multiple times), pulmonology, urology, cardiology, comprehensive care, colorectal, GI and neurology. They all agree it exists, they just don't know what the problem is.
Finally I mentioned it to the dietitian (which I wasn't even going to mention it because it seemed irrelevant) she said she knew what the problem was. She said that she was getting too little protein. (even though her blood work looked fine). She said that because her calorie needs are so low to achieve the 4:1 ratio that her protein was really small.
So we decided to wean off of the keto diet to see if the swelling and bloating improve. If they do, then we know what the problem was. If they don't improve, then we have ruled it out at least.
So far we have stepped down from 4:1 to 3.5:1 to 3:1 to currently at 2:1. So this mean decreasing the fat and increasing the carbs and protein. Her seizures got really bad when stepping down and we had to add back in a seizure med (Keppra). And we have seen no improvement of the feet. Her stomach is slightly better (but we are also on a new bowel regiment.).
Seizure control with the keppra has been going well. I am seeing virtually no seizures most days.
Tuesday, July 21, 2015
She is home
She is home. She did not grow staph in her second blood culture. Super good.
She will be starting keppra, a new seizure med, just until she starts the keto diet.
She will be inpatient for 3-5 days starting Sept 1 to transition to the keto diet. It is normally 2-3 days but because of her allergies and hypoglycemia they think it may take a bit longer.
We have to read this book before starting the diet. Click here
http://www.amazon.com/gp/aw/d/1936303108/ref=mp_s_a_1_9?qid=1437535078&sr=1-9&pi=AC_SX110_SY165_QL70&keywords=ketogenic+diet
She will be starting keppra, a new seizure med, just until she starts the keto diet.
She will be inpatient for 3-5 days starting Sept 1 to transition to the keto diet. It is normally 2-3 days but because of her allergies and hypoglycemia they think it may take a bit longer.
We have to read this book before starting the diet. Click here
http://www.amazon.com/gp/aw/d/1936303108/ref=mp_s_a_1_9?qid=1437535078&sr=1-9&pi=AC_SX110_SY165_QL70&keywords=ketogenic+diet
No keto diet right now
It is just to complicated to start the keto diet at a moments notice. They will be able to schedule her within a month. It will mean a 3 day inpatient stay to start the diet. I am excited. I think it will help a lot.
So that means we need to start a new seizure med to bridge the gap between now and then. I am not excited about that. We are going to do keppra. She has had it before and she doesn't like it. It can make you agitated. Oh well...it is just a few weeks.
The Drs have not rounded yet, but I think we will be going home today hopefully.
So that means we need to start a new seizure med to bridge the gap between now and then. I am not excited about that. We are going to do keppra. She has had it before and she doesn't like it. It can make you agitated. Oh well...it is just a few weeks.
The Drs have not rounded yet, but I think we will be going home today hopefully.
Info on Cannabis
Here is a link to find out more about Cannabis. Cannabis is an oil from the Marjuana plant that helps treat pain and seizures. It does not give you a high, because they extract out the portions they need and it is grown from a hybrid plant called Charlottes Web. Ellie would be a candidate, but we are waiting for it to become more affordable (AKA paid for by insurance). Click on FAQ at the top of the page http://hope4childrenwithepilepsy.com
Monday, July 20, 2015
Inpatient...hopefully not a big deal...may be a semi-big deal
Ellie is inpatient at primary children's.
Let me back up a bit.
I had spoken with her neurologist maybe 6 to 8 weeks ago about taking her off of her seizure med (on fi). We started the onfi about two years ago to try and help with her nighttime drops in oxygen, thinking that they may be seizures. Since then we changed her breathing regimen by adding multiple nebulized meds several times a day. That seemed to help the drops in oxygen. So we felt that she may not need the onfi. The neurologist was fine with this and presented a weaning plan.
For some reason I was nervous about weaning and procrastinated it for several weeks. At which time we met with her comprehensive care doctor (Dr. Murphy). I spoke with Dr. Murphy about possible reasons that she could be getting recurring pneumonia. The plan that we came up with was that perhaps she is getting too much sedating medication, which makes her unable to control her secretions. And therefore is aspirating from above. This would mean that her tone (muscles) is too loose and she cannot properly swallow her saliva and other secretions from above the lungs. The secretions would be going into her lungs and causing the pneumonia. It is just a hypothesis, but it was worth testing out. So we decided to wean off the onfi first, since it is sedating, and we had already talked to neurology. And then we might back off of her oral baclofen. The back listen is a medication which helps her relax her tight muscles.
A few days later we started weaning her off of the Onfi. She had her last dose of onfi a week ago Thursday. Since starting to wean her, her seizures have increased. I was hoping that she was just adjusting to being without the onfi and I was giving it a little bit of time.
Saturday night she had a long seizure. After approximately 30 minutes I couldn't wait any longer and I gave her emergency seizure medication, Diastat. We have given Diastat before but I think previously she was on too low of a dose. When giving the medication before it has never stopped her seizure,or slowed her breathing, or made her sleepy.
This time she was on the proper dose and it stopped the seizure within one minute. However, half an hour later she needed oxygen and was very sleepy. This was OK, it was to be expected. I gave the medication at about 6 PM on Friday night. During the night that night, her heart rate was up. It is normally below 100. And that night it was running 130. Typically the Diastat would be expected to lower your heart rate. I decided to watch her overnight (meaning not take her to Primaries).
The next day her heart rate was running 150 (even higher), she was still very sleepy, I took her temperature and she had a high fever. I decided it was time to take her to primaries.
They ran urine which was clean. Chest x-ray showed no pneumonia. Blood work was good. Snot was good. They gave fluids, and her heart rate and temperature came down. They decided to admit her for observation overnight.
Overnight and this morning her heart rate and temperature were back to normal and she was looking great. I thought we would be going home. Then they said that her blood culture grew out coag neg staph. Staph is everywhere on your skin, so it could have been a false reading. They did a repeat blood culture at 10 AM this morning. They needed us to stay overnight to wait for the blood culture results because staff is a very aggressive bug. They did not start her on an anabiotic because she was asymptomatic. They are concerned that it may have been an accurate lab result because number one she had a fever and elevated heart rate. And number two it grew out at 16 hours which is fast. If it was a false reading they would expect it to take longer than 24 hours to grow out. We will hopefully have results by 10 o'clock tomorrow morning. If she has stuff in her blood it means coming home with a pick line and IV anabiotic's for several weeks.
Neurology also came by for a new seizure plan. We would like to start the keto diet (ketogenic diet) instead of another seizure med. They also offered us the option of using cannabis oil. I will talk about the oil in a minute. The keto diet is a little bit similar to the Atkins diet because it is high fat and protein and low carbs. Send your body into ketosis which is normally a bad thing.if you have been on three or more seizure medications that have not worked then the keto diet or cannabis oil are your best options for controlling seizures. Ellie has been on probably 10 medications. The keto diet is extremely strict ...you cannot have a lick or bite of any food, without weighing, calculating and formulating what you are going to eat and how you're going to adjust your diet based on that one lick that you had. Fortunately in our case Ellie is that formula through her G-tube, so it is easier. It means changing her formula and some of her medications, you cannot have any liquid medications because they have alcohol and sugar in them. It just means she cannot have licks of anything. When you start the keto diet you must commit to it fully for a one-year require you to make a one year minimum. The keto diet has shown great success.
The cannabis oil is made from an extract from the marijuana plant. You cannot get a high from the oil. It has also shown great success controlling seizures and pain with virtually no harmful side effects. It is still under research. Doctors are allowed to prescribe it in Utah, but you have to purchase it out of pocket. I think it is a great option, I am just waiting for insurance to pay for it. All seizure medications have bad side effects. The one I gave her Sat night can cause your breathing to slow so much that you die. This is not the case with cannabis.
Let me back up a bit.
I had spoken with her neurologist maybe 6 to 8 weeks ago about taking her off of her seizure med (on fi). We started the onfi about two years ago to try and help with her nighttime drops in oxygen, thinking that they may be seizures. Since then we changed her breathing regimen by adding multiple nebulized meds several times a day. That seemed to help the drops in oxygen. So we felt that she may not need the onfi. The neurologist was fine with this and presented a weaning plan.
For some reason I was nervous about weaning and procrastinated it for several weeks. At which time we met with her comprehensive care doctor (Dr. Murphy). I spoke with Dr. Murphy about possible reasons that she could be getting recurring pneumonia. The plan that we came up with was that perhaps she is getting too much sedating medication, which makes her unable to control her secretions. And therefore is aspirating from above. This would mean that her tone (muscles) is too loose and she cannot properly swallow her saliva and other secretions from above the lungs. The secretions would be going into her lungs and causing the pneumonia. It is just a hypothesis, but it was worth testing out. So we decided to wean off the onfi first, since it is sedating, and we had already talked to neurology. And then we might back off of her oral baclofen. The back listen is a medication which helps her relax her tight muscles.
A few days later we started weaning her off of the Onfi. She had her last dose of onfi a week ago Thursday. Since starting to wean her, her seizures have increased. I was hoping that she was just adjusting to being without the onfi and I was giving it a little bit of time.
Saturday night she had a long seizure. After approximately 30 minutes I couldn't wait any longer and I gave her emergency seizure medication, Diastat. We have given Diastat before but I think previously she was on too low of a dose. When giving the medication before it has never stopped her seizure,or slowed her breathing, or made her sleepy.
This time she was on the proper dose and it stopped the seizure within one minute. However, half an hour later she needed oxygen and was very sleepy. This was OK, it was to be expected. I gave the medication at about 6 PM on Friday night. During the night that night, her heart rate was up. It is normally below 100. And that night it was running 130. Typically the Diastat would be expected to lower your heart rate. I decided to watch her overnight (meaning not take her to Primaries).
The next day her heart rate was running 150 (even higher), she was still very sleepy, I took her temperature and she had a high fever. I decided it was time to take her to primaries.
They ran urine which was clean. Chest x-ray showed no pneumonia. Blood work was good. Snot was good. They gave fluids, and her heart rate and temperature came down. They decided to admit her for observation overnight.
Overnight and this morning her heart rate and temperature were back to normal and she was looking great. I thought we would be going home. Then they said that her blood culture grew out coag neg staph. Staph is everywhere on your skin, so it could have been a false reading. They did a repeat blood culture at 10 AM this morning. They needed us to stay overnight to wait for the blood culture results because staff is a very aggressive bug. They did not start her on an anabiotic because she was asymptomatic. They are concerned that it may have been an accurate lab result because number one she had a fever and elevated heart rate. And number two it grew out at 16 hours which is fast. If it was a false reading they would expect it to take longer than 24 hours to grow out. We will hopefully have results by 10 o'clock tomorrow morning. If she has stuff in her blood it means coming home with a pick line and IV anabiotic's for several weeks.
Neurology also came by for a new seizure plan. We would like to start the keto diet (ketogenic diet) instead of another seizure med. They also offered us the option of using cannabis oil. I will talk about the oil in a minute. The keto diet is a little bit similar to the Atkins diet because it is high fat and protein and low carbs. Send your body into ketosis which is normally a bad thing.if you have been on three or more seizure medications that have not worked then the keto diet or cannabis oil are your best options for controlling seizures. Ellie has been on probably 10 medications. The keto diet is extremely strict ...you cannot have a lick or bite of any food, without weighing, calculating and formulating what you are going to eat and how you're going to adjust your diet based on that one lick that you had. Fortunately in our case Ellie is that formula through her G-tube, so it is easier. It means changing her formula and some of her medications, you cannot have any liquid medications because they have alcohol and sugar in them. It just means she cannot have licks of anything. When you start the keto diet you must commit to it fully for a one-year require you to make a one year minimum. The keto diet has shown great success.
The cannabis oil is made from an extract from the marijuana plant. You cannot get a high from the oil. It has also shown great success controlling seizures and pain with virtually no harmful side effects. It is still under research. Doctors are allowed to prescribe it in Utah, but you have to purchase it out of pocket. I think it is a great option, I am just waiting for insurance to pay for it. All seizure medications have bad side effects. The one I gave her Sat night can cause your breathing to slow so much that you die. This is not the case with cannabis.
Thursday, June 25, 2015
Seriously?!?!?!?!?!
Two of Ellie's sisters had fevers last week. Maybe just a little flu bug. Ellie also got a fever at the end of last week, so I figured she had gotten it also.
Tues night she was a little sleepy and needed oxygen. But I wasn't really worried. She had also been having an increased heart rate, but I still wasn't too worried.
Wed morning she went to school with no oxygen (like normal) and came home on 2.5 liters (pretty high from 0). Her nurse said she was sitting at 86 without oxygen. She decided she needed oxygen. She tried her at lower settings, but she really needed 2.5 liters and that was just to maintain 90-91 (not great, but acceptable).
I made an appointment with her pediatrician for 2:40. Got to Primary Children's ER at 5:30. Got to a room at 10:10. Got to sleep at 1:30 AM. You gotta love hospital time!!! (Even worse than Mormon Standard Time!)
Ellie is at Primary's AGAIN, with pneumonia AGAIN. She also has a left ear infection.
In the ER they gave her a HUGE albuterol and another nebulized med, a steroid in her g-tube, started her on an IV antibiotic and two bags of IV fluids.
She is doing much better today. Her heart rate is normal. Her sats have been above 98 on 1 liter of oxygen and she is coughing up LOTS of crap (which is good).
She is awake, alert and smiling.
I have asked them to explore any possibilities as to why these pneumonias are happening so frequently. The possibilities I see are #1) with all of her nebulized meds we are thinning her lung secretions out too much and she can't control them #2) her tone is too loose AKA she is getting too much baclofen so she can't control her secretions (saliva) #3) Her nissen (explained below) has failed and she is refluxing into her lungs #4) she is colonized with Pseudomonas which is nearly impossible to kill, so it just keeps coming back #5) medically complicated kiddos often get more fragile as they get older and just get weaker and sicker more easily.
I obviously hope that it is not #5.
I had spoken with her Comprehensive Care Dr. (Dr. over kids with complex medical needs) about a month ago about this very topic. The plan we came up with was to wean her seizure med (onfi) and then possibly wean her baclofen. Those meds could potentially be making her tone too loose, making her unable to control her secretions (saliva). We have been weaning her onfi over the last month. We have 2 more weeks until it will be gone. We also discussed the possibility that her Nissen has failed. A nissen is a surgery which wraps part of the stomach around the the part where the stomach and esophagus meet. As the stomach fills with food the nissen (wrapped part of stomach) tightens and does not allow food to reflux back up. If the nissen has failed, food could be coming up from her esophagus and going in to her lungs.
They are going to do an upper GI tomorrow to look at the nissen. They will inject contrast (dye) into her stomach through her g tube and then take a series of x-rays to see where the dye goes.
The swallowing needs to be looked at with a swallow study and they will do that when she is not sick (which is practically never...so we'll see).
Tues night she was a little sleepy and needed oxygen. But I wasn't really worried. She had also been having an increased heart rate, but I still wasn't too worried.
Wed morning she went to school with no oxygen (like normal) and came home on 2.5 liters (pretty high from 0). Her nurse said she was sitting at 86 without oxygen. She decided she needed oxygen. She tried her at lower settings, but she really needed 2.5 liters and that was just to maintain 90-91 (not great, but acceptable).
I made an appointment with her pediatrician for 2:40. Got to Primary Children's ER at 5:30. Got to a room at 10:10. Got to sleep at 1:30 AM. You gotta love hospital time!!! (Even worse than Mormon Standard Time!)
Ellie is at Primary's AGAIN, with pneumonia AGAIN. She also has a left ear infection.
In the ER they gave her a HUGE albuterol and another nebulized med, a steroid in her g-tube, started her on an IV antibiotic and two bags of IV fluids.
She is doing much better today. Her heart rate is normal. Her sats have been above 98 on 1 liter of oxygen and she is coughing up LOTS of crap (which is good).
She is awake, alert and smiling.
I have asked them to explore any possibilities as to why these pneumonias are happening so frequently. The possibilities I see are #1) with all of her nebulized meds we are thinning her lung secretions out too much and she can't control them #2) her tone is too loose AKA she is getting too much baclofen so she can't control her secretions (saliva) #3) Her nissen (explained below) has failed and she is refluxing into her lungs #4) she is colonized with Pseudomonas which is nearly impossible to kill, so it just keeps coming back #5) medically complicated kiddos often get more fragile as they get older and just get weaker and sicker more easily.
I obviously hope that it is not #5.
I had spoken with her Comprehensive Care Dr. (Dr. over kids with complex medical needs) about a month ago about this very topic. The plan we came up with was to wean her seizure med (onfi) and then possibly wean her baclofen. Those meds could potentially be making her tone too loose, making her unable to control her secretions (saliva). We have been weaning her onfi over the last month. We have 2 more weeks until it will be gone. We also discussed the possibility that her Nissen has failed. A nissen is a surgery which wraps part of the stomach around the the part where the stomach and esophagus meet. As the stomach fills with food the nissen (wrapped part of stomach) tightens and does not allow food to reflux back up. If the nissen has failed, food could be coming up from her esophagus and going in to her lungs.
They are going to do an upper GI tomorrow to look at the nissen. They will inject contrast (dye) into her stomach through her g tube and then take a series of x-rays to see where the dye goes.
The swallowing needs to be looked at with a swallow study and they will do that when she is not sick (which is practically never...so we'll see).
The miracle of the nebulizer
The week before girls camp Ellie had pneumonia. Even the day before camp I wasn't sure if she was going to be healthy enough to go.
Jason and I decided the morning of camp that we would try taking her and we could always bring her home if we needed to.
When I got to girls camp with Ellie and was unpacking, I saw that something looked funny on her
nebulizer. the hose was coming out of the machine crooked. A nebulizer is just a compressor that sucks air in and blows it out. There is a hose that goes from the nebulizer to a cup filled with medicine and the air makes the medicine into a fine mist that the person breathes in to help their lungs. I tried carefully bending the hose back into place and heard a SNAP! It was completely broken off.
Oh no!
OK
Regroup
I took the machine to the caretaker of the camp and asked if he had any duct tape. He said yes and we went to the workshop and tried to tape it in place. It seemed OK. Not great, but OK. Jason was coming up the next day. I had an old rickety nebulizer at home that I would have him bring up. I thought the duct tape would get us through the night and the next morning.
Later on the girls were doing a craft and had hot glue guns out. I thought that hot glueing the broken piece would be much better than duct tape. So I went and got the machine and tried glueing it. After trying multiple times I seemed to have it secure.
Whew!
At bedtime that night I went to use the nebulizer. It wouldn't work. I panicked.
I realized when I glued it that I must have accidentally also glued the air intake closed. I pulled the glue off. But the hose had the broken piece of nebulizer stuck in it and I still didn't have a way to hook the hose to the nebulizer.
Ellie really needed this medicine. This was the only thing keeping her lungs healthy enough to get better from pneumonia and to be able to stay at girls camp.
I decided to cut the hose end off and I should be able to slip the hose (without the end) onto the part I needed to. It didn't' work. And now my hose only had 1 end.
I could cut apart an oxygen nasal canula tubing, but that hose was no bigger than the one I already had.
If an oxygen tank is cranked up to above 6 liters you can use it in place of a nebulizer. But my cut apart nebulizer hose wasn't working and I had already decided a cut apart oxygen nasal canula wasn't going to fit on the regulator either.
I could call Jason to drive all the way up here with her junky nebulizer, but I was hoping not to do that.
I could load Ellie up and we could go home. But it was already 10 PM (way past her bedtime) and I would have to either load up all of her equipment so she could sleep at home. or drive back up here. It was a 45 minute one way trip and an hour and a half two way trip. Those weren't good options.
I could ask a leader to drive to Ogden and back, but we would still be out an hour and a half.
I could have a leader drive halfway and Jason drive halfway. But it would still probably be an hour before I got things arranged.
I was really stuck. Not including my earlier tape and glue incidents, I had been working on the problem for about 45 minutes.
I probably should have come to the conclusion earlier, but I decided it was time to pray. I explained my problem to the Lord. When I completed my prayer, I walked over to the nebulizer supply box. I picked up a random 1 mL syringe which was a really weird size that I NEVER use. I pulled the syringe apart. I inserted the cut end of the nebulizer hose into the bottom of the syringe and attached it to the oxygen tank and it worked. It wasn't perfect, but it worked. I reused some of the duct tape from earlier in the day. I had it fixed in less than 2 minutes.
I thanked my Heavenly Father.
I know that my Father was watching over Ellie and me that night and throughout girls camp. Heavenly Father answers prayers without a shadow of a doubt.
Jason and I decided the morning of camp that we would try taking her and we could always bring her home if we needed to.
When I got to girls camp with Ellie and was unpacking, I saw that something looked funny on her
nebulizer. the hose was coming out of the machine crooked. A nebulizer is just a compressor that sucks air in and blows it out. There is a hose that goes from the nebulizer to a cup filled with medicine and the air makes the medicine into a fine mist that the person breathes in to help their lungs. I tried carefully bending the hose back into place and heard a SNAP! It was completely broken off.
Oh no!
OK
Regroup
I took the machine to the caretaker of the camp and asked if he had any duct tape. He said yes and we went to the workshop and tried to tape it in place. It seemed OK. Not great, but OK. Jason was coming up the next day. I had an old rickety nebulizer at home that I would have him bring up. I thought the duct tape would get us through the night and the next morning.
Later on the girls were doing a craft and had hot glue guns out. I thought that hot glueing the broken piece would be much better than duct tape. So I went and got the machine and tried glueing it. After trying multiple times I seemed to have it secure.
Whew!
At bedtime that night I went to use the nebulizer. It wouldn't work. I panicked.
I realized when I glued it that I must have accidentally also glued the air intake closed. I pulled the glue off. But the hose had the broken piece of nebulizer stuck in it and I still didn't have a way to hook the hose to the nebulizer.
Ellie really needed this medicine. This was the only thing keeping her lungs healthy enough to get better from pneumonia and to be able to stay at girls camp.
I decided to cut the hose end off and I should be able to slip the hose (without the end) onto the part I needed to. It didn't' work. And now my hose only had 1 end.
I could cut apart an oxygen nasal canula tubing, but that hose was no bigger than the one I already had.
If an oxygen tank is cranked up to above 6 liters you can use it in place of a nebulizer. But my cut apart nebulizer hose wasn't working and I had already decided a cut apart oxygen nasal canula wasn't going to fit on the regulator either.
I could call Jason to drive all the way up here with her junky nebulizer, but I was hoping not to do that.
I could load Ellie up and we could go home. But it was already 10 PM (way past her bedtime) and I would have to either load up all of her equipment so she could sleep at home. or drive back up here. It was a 45 minute one way trip and an hour and a half two way trip. Those weren't good options.
I could ask a leader to drive to Ogden and back, but we would still be out an hour and a half.
I could have a leader drive halfway and Jason drive halfway. But it would still probably be an hour before I got things arranged.
I was really stuck. Not including my earlier tape and glue incidents, I had been working on the problem for about 45 minutes.
I probably should have come to the conclusion earlier, but I decided it was time to pray. I explained my problem to the Lord. When I completed my prayer, I walked over to the nebulizer supply box. I picked up a random 1 mL syringe which was a really weird size that I NEVER use. I pulled the syringe apart. I inserted the cut end of the nebulizer hose into the bottom of the syringe and attached it to the oxygen tank and it worked. It wasn't perfect, but it worked. I reused some of the duct tape from earlier in the day. I had it fixed in less than 2 minutes.
I thanked my Heavenly Father.
I know that my Father was watching over Ellie and me that night and throughout girls camp. Heavenly Father answers prayers without a shadow of a doubt.
Girls Camp Hike
Ellie hates camping. It is hot and cold, windy and sunny, bugs and bugspray, dirt and bumpy roads. When Ellie turned 12, Ward Girls Camp was in Morgan. I drove her up each day, stayed with her and then we drove home at night. This seemed to be the best solution. She could participate, but really she is a condo/hotel gal all the way. She had an OK time, but it was mostly torture. It was in July in Utah, so it was blazing hot. At one point we had to get in a leaders van and try to cool her off in the air conditioning. But she made it through.
The highlight for the other girls in the ward was helping Ellie on a 3 mile hike. The first half to 3/4 of a mile was really flat. It was a dirt road, but it was a real road that cars drove on. Although it was really hot, the hiking wasn't hard. Then we started heading up the mountain. The road was wide enough for her jogging stroller thankfully, but it was REALLY rocky. It sometimes took 4 of us to lift and push her up the steep rocky road. We felt like the handcart pioneers. When we got near the top there was a white pole that was our finish line. We could see the top, but it was very muddy between where we were standing and the top. I called it quits. There was no way I was taking her through the puddles and mud. Yuck. It would get her stroller muddy and us muddy, it just wasn't orth it. Then as soon as something to that effect left my lips, I realized I couldn't do it. We had come so far, we COULD NOT QUIT with the end in sight. I thought back to the hard work we had already done. If we didn't finish this, it would all be for nothing. So I ate my words and said that we were going to finish this. We pushed and lifted her all the way to the white pole.
You may see why all of the girls loved this part of girls camp. It feels good to help others. We accomplished something great and uncommon. We learned about working together. We set a goal and reached it. We did not quit when the going was hard.
One other back story is that a few years ago we had planned an entire family vacation around going to timpanogus and hiking with Ellie up the paved path to the entrance of the cave. When we got to the bottom of the hike, they would not allow any wheeled vehicles on the path, including wheelchairs. I was soooo mad. We had planned our entire trip around this. It was paved, what was the problem? I took the other kids on the hike while Jason stayed back with Ellie. After hiking up the trail with the kids I could see why they didn't want wheeled things on the trail, there are sharp drop-offs. If you lost control of the stroller/wheelchair, it would literally mean death. Although I understood, I was still disappointed. We did go on a little other paved trail up the canyon a bit, but it was just flat and not the challenge I had planned on. (As a side note I think they were forced by lawsuit to change their rule since then. I believe they still STRONGLY recommend against it, and they still don't allow strollers, but wheelchairs are allowed).
This year for girls camp I met with our Ward and Stake Girls Camp directors to go over what accommodations could/needed to be made for Ellie to participate. The good news was that their location had an air conditioned lodge and they were going in early June, instead of July like last year. When I met with them I was unsure as to whether Ellie would be spending the night, or if we would be driving back and forth. By the end of the meeting they arranged for Ellie and I to have our own trailer to sleep in so she could have privacy and a heater at night. I hoped that this would make her camping experience tolerable for her.
One of the days a hike was planned. Before going to camp I had discussed with the person planning the hike what the trail conditions were. Was it rocky? Was it steep? How wide was the path? I told her that steep wasn't a problem (perhaps I had forgotten Timpanogus?!?!?!?), but it would be difficult if the path were too narrow for her jogging stroller. She came back to me and told me that the path was narrow and not wide enough for a jogging stroller and there were weeds and foliage on both sides of the path. There were streams to cross and it was also steep. She flat out said Ellie wouldn't be able to do the hike. She said part of the 3 mile hike was on the road and maybe we could meet the group there. I just kept her words in the back of my head, knowing she was probably right.
The morning of the hike I still hadn't decided what to do about the hike. I wanted her to be able to do it, but it sounded like it would be impossible. I struggled with being mad that they hadn't changed the hike so that Ellie could fully participate. Yet, was that fair? to make the entire rest of camp go on an easier hike to accommodate one girl? It was an internal battle.
I was stalling and procrastinating, because my decision was unsure. I first concluded that we would at least show up to see the girls off and look at the trail. As we approached the waiting girls from the stake, I decided we would give it a try, we could always turn back, right??? There was a 3 mile and a 5 mile hike, they started off on the same path and then the 3 mile broke off and returned to camp on a road. So if we hadn't turned back by that point, we could always head back when we got to the road and the rest of the girls could go on without us.
As we waited for a few minutes I realized I had way overdressed Ellie. It was hot and I had prepared for cold weather, not hot. Ellie is pretty much always cold and always has blankets and multiple layers on. To give you an idea, her normal body temperature ranges from 93.0 to 95.5 F. A typical person is 98.6 F. We were just getting into hot days, and I hadn't readjusted my thinking yet. And when we walked out of the trailer it was still cool, but it warmed up fast. As I realized the weather was way above what I had thought, I shed a bunch of Ellie's blankets and things quickly before we started on the hike. But she still had her snuggly flannel PJ's on.
Several people asked if we were going on the hike? Or even questioned which hike we were going on. Then I was told that all of the other girls from our ward were going on the 5 mile hike. I still held on to the belief that we could turn back anytime, or at the very least turn back at the road to complete the 3 mile hike. I just responded each time with, " we will go as far as we can and then we will turn back."
Ellie and the other girls from our ward were at the very back of everyone. I hadn't asked the other girls to help, they just came over by Ellie and we started the hike. From the very beginning the path was exactly as it had been described...narrow with foliage on both sides. I was pushing the stroller by myself. It was difficult.
After a few minutes (not more than 5 or 10) I thought it was pretty hard and decided if Ellie and I were going to turn back, that now was the time to do it because it would be just as hard going back and I would be by myself, so I didn't want to go far by myself. I voiced my doubts and several of the girls said they thought it was going to open up any minute and the foliage wouldn't be as thick. Although they had no idea what they were talking about, I held onto that hope. We kept going. The girls started taking turns helping. The girls in my ward that were with us range in age from 12-15, mostly towards the younger ages. The girls worked out a rotating schedule that 2 of them would push Ellie at the same time, when it was an adults turn the adult typically pushed alone.
Then we got to our first stream. It was another time that at first I expressed doubts (verbal or not, I don't remember). I took a look around and saw a few large rocks. I picked them up and arranged a few stepping stones across the river and suggested that we have 4 of us try to lift the stroller over the river. We were able to do it. I think some of the girls got their socks and shoes wet, not a good combo for hiking. That became the point of no return, at least for me. If I wanted to turn around past this point, I wouldn't be able to get back by myself. One other nagging concern I had on the entire hike was, what if one of the 3 bicycle tires on the stroller broke or went flat. We were going through weeds non-stop, I'm sure there were thorns. We could be in big big trouble.
We continued on the path and it really didn't get any wider, just more of the same. There were 3 or 4 more streams we had to carry Ellie across.
At some point I checked on Ellie and realized she was REALLY REALLY hot. I had brought a thin cotton sheet that I was planning on draping over her canopy for shade. I had the girls turn away for Ellie's privacy and I removed her flannel jammie top and draped the cotton sheet over her torso to help cool her off.
We were getting tired and hot but we kept going. I knew soon we would be coming to the road, which would be my chance to turn back. I was planning on giving the girls a choice, do you want to continue helping Ellie to finish the 5 mile hike, or Ellie and I can turn and go down the road, either way was fine with me. When we got to the road a runner from the group up ahead came back down the path to check on us. The girls said we were doing good and they just kept pushing Ellie, so I never asked them if they wanted to proceed on their own, we just kept going.
At this point the terrain changed. This is where the path got wider. All of the wheels were actually able to be on the path. This was a HUGE improvement. However, the path became much steeper and it was getting hotter. We kept going. We were slow, but constantly moving forward.
We were headed up the mountain on switchbacks. At one point way up ahead (and what seemed to be waaaayyy up the mountain) the group up ahead had stopped and was waving and shouting to us. We waved and shouted back. It was fun to see them, but we realized exactly how much higher we still had to go and it was a little overwhelming. On we went. Several times the leaders would to a "power run" up a big hill, meaning we would tell the girls to hurry up or get out of the way and one of the leaders would run as hard and fast up a big hill pushing Ellie as far and fast as they could go (which was probably only like 10-15 seconds).
At least one of the girls ran out of water, thankfully we had some extra. When we thought we were getting to the top, a girl from another ward was coming back down the path. We stopped her and pumped her for information. Mainly: how much farther, is it closer to 10 minutes, 30 minutes or more to reach the summit? She told us about 10 more minutes (but it was closer to 20 at least), and she told us there was a waterfall at the top. The waterfall sounded glorious, I wanted to take my socks and shoes off an get in and put my head under the waterfall. She was going to go past us and go back down the path that we had just come up. She was all by herself. She thought this was the way back to camp. She did not realize that this hike was a loop. She thought she was just catching up to the group ahead of her. We stopped her and made her come back up with us, because no one else had passed us going down.
We got to the summit and were sorely disappointed. We could see the waterfall, but it was on another mountainside with a huge valley in between us. There was no water to cool us off. We had started hiking at 9 AM. It was now 11:55, basically 3 hours. I think on the schedule it said the whole hike was supposed to take 3 hours. Back at camp they would be eating lunch. The leaders told the girls that if the food was all gone, we would drive them to town and buy them burgers, shakes and fries. This seemed to cheer them up. We were all really hot and exhausted.
Ellie is only supposed to stay in one position for an hour and a half to two hours max. It had been 3. We found a little tiny patch of shade for us to sit in. I laid Ellie down on the ground to give her bottom a break from being in the stroller for too long. The ground was rocky and hard. We sat and relaxed for 15 minutes to give her a break. The girls were antsy to get going, but this was the minimum amount of time I felt comfortable with laying Ellie down. We ate some snacks and drank some water and reapplied sunscreen. I also had everyone turn away again for privacy and I took off Ellie's PJ bottoms also and covered her torso and thighs with the sheet to help with additional cooling.
We started back down at 12:10. The path going down was wide enough for the stroller until we got back down to the road. It was sooooooo much easier going down than up. The wheelchair practically pulled you down the path.
When we got to the road we were unclear as to whether to take the road back to camp or the path. We knew we weren't too lost, we figured if we took the road we would get back to camp. Ellie and I waited on the road and told the girls to go down the path just a little and see if they could see any signs. One of the leaders had the task of being the LAST person on the hike and collecting all of the signs. At this intersection there were no signs. After about 30 seconds the girls called that they found a sign down the path, so we knew which way to go. I was disappointed because I was looking forward to an easy road to push the stroller down, but instead we were back to the narrow path with foliage on both sides.
As we traveled a little farther down the narrow path we came upon a group of 4 girls. They were unsure that they were on the right path. Because just around the corner the path turned around backwards and had switchbacks going back up a hill. It felt backwards and the wrong direction. We assured them that we had seen the sign and we were positive we were on the right path. They said that they had said a prayer and then we showed up.
When we got around the corner and the path did a 180 and started climbing again, it was very disorienting. But there was no other paths. We knew we were going the right way.
There was only 1 river to cross on the way back down and it had a narrow bridge.
As we approached camp a leader and a girl had come back up the path to check on us. We said we were doing good.
We saw the cabins ahead and knew we were approaching camp. I jokingly said to the other leader that I could see the finish line (meaning the cabins). This other leader and I had trained for and run a half marathon together a few years ago, so we had run across a finish line together before.
When we turned the final corner and the meadow came into view, we saw the entire camp waiting there for us and using some rope and a poster board they REALLY had made a finish line for us. Everyone waiting for us starting yelling and cheering for us. We started running toward the finish line and were elated and filled with emotion. It was amazing. It took us 4 hours and 45 minutes to hike the full five miles.
I tried to point out life lessons to the girls along the hike and some I have been thinking about since the hike. I will share some of them with you.
Sometimes in the gospel we are unsure of things. Which way should I go? Am I on the right path? Is the gospel true? There are people (leaders, visiting teachers, friends, family) to help us (like those on the path with Ellie and those who came back to check on us) and signs (promptings) to point us in the right direction.
Ellie's stroller is really tall, when pushing uphill you basically have to look down at the ground right in front of you, it is difficult to look ahead. When you are in the midst of a trial and pushing with everything you've got, you can't see the bumps until you are right on top of them. If you can try to raise your gaze (look to God, see the bigger picture) it will make your path straighter and you can avoid rocks in your path.
Sometimes when you are presented with a trial (hard hike) you don't think you can do it. You become stronger by the time you finish. If people had told me what I had to go through with Ellie by the time she was 13 there would have been no possible way I could have done what I do 13 years ago. But now I can. I have learned and gotten stronger along the way.
Each step in the right direction (on the straight and narrow) gets you closer to your final destination (God).
Keep going. Do not stand still in the gospel. Don't get stagnant in the gospel. Read your scriptures, say your prayers, go to church, etc.
Because the path was so narrow , it was easy to push Ellie off the path. As soon as you notice you've left the path, get right back on the right path. Don't keep going in the wrong direction. If you make a mistake, repent and get back on the path.
The path often gets steeper before it gets easier. We need to prove to God and ourselves that we are going to stick with it.
Sometimes our lives seems like drudgery. Like we are pushing through heavy foliage or climbing a steep mountain. We need to remember that it can't continue like that forever, We need to have faith and hope that God will provide a way (faith that the path will open up).
Sometimes we get to a point in our lives that we truly cannot do anymore for ourselves. We are at a stream and we can't cross it. We need to be lifted up and over the stream. Christ is willing to lift us over the stream when we cannot.
By pushing Ellie, the girls were doing something in "proxy" (in behalf of). They were doing something for someone that couldn't do it for themselves. Just like we do work in the temple for the dead. Or just like Christ suffered for our sins in proxy of us.
We are all going along the gospel path at our own speed. Just because the other campers were able to complete the hike faster than we did does not make them any better. We are all at different places along our spiritual journey. We need compassion for others, not judgmental comments or thoughts. If someone shows up to church smelling like smoke, which is the better reaction: turn up your nose and sit far away from them, or invite them to sit by you, get to know them, and tell them you're glad they came.
Sometimes a runner comes back to check on your spiritual progress. It may be a visiting teacher, family member, church leader, church talk, scripture, or a thought from long ago. It causes you to reflect upon where you are in life. How are you doing? Are you headed in the right direction? Do you need any help?
Faith must be followed by action. I couldn't just say, "I have faith Ellie can make it to the top of the mountain." I had to start walking, that is when the miracles happen. "Faith Precedes the miracle". "Faith without works is dead."
We need to prepare for the trials ahead. I was unprepared for the hot weather. The 5 virgins were unprepared and they missed the wedding. Ellie would have been much more comfortable if I had prepared. We will be happier as we spiritually prepare.
When I looked up at the people ahead of us on the path it was overwhelming. We can get overwhelmed thinking of how far we have to go. There are so many things spiritually that we can be working on: scriptures, family home evening, dinner with family, family history, temple work, food storage and on and on. We need to realize how far we have come, be constantly improving and eventually we will arrive. We cannot become frozen with inaction.
The things we want, such as the waterfall, are not always the things we get. We refreshed ourselves in a different way...with the shade and sitting down, but it was not what we had planned on. God often answers "no" or "wait" or "here is a different way."
One of the girls and I got stung by stinging nettle for the first time on the hike. At first it stung and then the area went numb. It is like sin. At first our senses are heightened and we are warned by the spirit that we shouldn't do whatever it is. he sin causes us spiritual pain. Then after a while we become numb to the action or inaction and can't feel the promptings the way we need and want to.
Looking back at the Timpanogus story...rules are there to protect us. We might get mad or discouraged, but they are there for our safety. Follow God's rules for your own protection.
When we get to the finish line (heaven and God) the hosts of heaven will be cheering us on. We will rush forward and feel our Father in Heaven's love. We will know that we completed the course and were faithful to the end.
Ellie absolutely loved girls camp. It was truly a blessing from above. I know God strengthened both of us to be healthy, make good decisions, have so many people help us and have an enjoyable time.
The highlight for the other girls in the ward was helping Ellie on a 3 mile hike. The first half to 3/4 of a mile was really flat. It was a dirt road, but it was a real road that cars drove on. Although it was really hot, the hiking wasn't hard. Then we started heading up the mountain. The road was wide enough for her jogging stroller thankfully, but it was REALLY rocky. It sometimes took 4 of us to lift and push her up the steep rocky road. We felt like the handcart pioneers. When we got near the top there was a white pole that was our finish line. We could see the top, but it was very muddy between where we were standing and the top. I called it quits. There was no way I was taking her through the puddles and mud. Yuck. It would get her stroller muddy and us muddy, it just wasn't orth it. Then as soon as something to that effect left my lips, I realized I couldn't do it. We had come so far, we COULD NOT QUIT with the end in sight. I thought back to the hard work we had already done. If we didn't finish this, it would all be for nothing. So I ate my words and said that we were going to finish this. We pushed and lifted her all the way to the white pole.
You may see why all of the girls loved this part of girls camp. It feels good to help others. We accomplished something great and uncommon. We learned about working together. We set a goal and reached it. We did not quit when the going was hard.
One other back story is that a few years ago we had planned an entire family vacation around going to timpanogus and hiking with Ellie up the paved path to the entrance of the cave. When we got to the bottom of the hike, they would not allow any wheeled vehicles on the path, including wheelchairs. I was soooo mad. We had planned our entire trip around this. It was paved, what was the problem? I took the other kids on the hike while Jason stayed back with Ellie. After hiking up the trail with the kids I could see why they didn't want wheeled things on the trail, there are sharp drop-offs. If you lost control of the stroller/wheelchair, it would literally mean death. Although I understood, I was still disappointed. We did go on a little other paved trail up the canyon a bit, but it was just flat and not the challenge I had planned on. (As a side note I think they were forced by lawsuit to change their rule since then. I believe they still STRONGLY recommend against it, and they still don't allow strollers, but wheelchairs are allowed).
This year for girls camp I met with our Ward and Stake Girls Camp directors to go over what accommodations could/needed to be made for Ellie to participate. The good news was that their location had an air conditioned lodge and they were going in early June, instead of July like last year. When I met with them I was unsure as to whether Ellie would be spending the night, or if we would be driving back and forth. By the end of the meeting they arranged for Ellie and I to have our own trailer to sleep in so she could have privacy and a heater at night. I hoped that this would make her camping experience tolerable for her.
One of the days a hike was planned. Before going to camp I had discussed with the person planning the hike what the trail conditions were. Was it rocky? Was it steep? How wide was the path? I told her that steep wasn't a problem (perhaps I had forgotten Timpanogus?!?!?!?), but it would be difficult if the path were too narrow for her jogging stroller. She came back to me and told me that the path was narrow and not wide enough for a jogging stroller and there were weeds and foliage on both sides of the path. There were streams to cross and it was also steep. She flat out said Ellie wouldn't be able to do the hike. She said part of the 3 mile hike was on the road and maybe we could meet the group there. I just kept her words in the back of my head, knowing she was probably right.
The morning of the hike I still hadn't decided what to do about the hike. I wanted her to be able to do it, but it sounded like it would be impossible. I struggled with being mad that they hadn't changed the hike so that Ellie could fully participate. Yet, was that fair? to make the entire rest of camp go on an easier hike to accommodate one girl? It was an internal battle.
I was stalling and procrastinating, because my decision was unsure. I first concluded that we would at least show up to see the girls off and look at the trail. As we approached the waiting girls from the stake, I decided we would give it a try, we could always turn back, right??? There was a 3 mile and a 5 mile hike, they started off on the same path and then the 3 mile broke off and returned to camp on a road. So if we hadn't turned back by that point, we could always head back when we got to the road and the rest of the girls could go on without us.
As we waited for a few minutes I realized I had way overdressed Ellie. It was hot and I had prepared for cold weather, not hot. Ellie is pretty much always cold and always has blankets and multiple layers on. To give you an idea, her normal body temperature ranges from 93.0 to 95.5 F. A typical person is 98.6 F. We were just getting into hot days, and I hadn't readjusted my thinking yet. And when we walked out of the trailer it was still cool, but it warmed up fast. As I realized the weather was way above what I had thought, I shed a bunch of Ellie's blankets and things quickly before we started on the hike. But she still had her snuggly flannel PJ's on.
Several people asked if we were going on the hike? Or even questioned which hike we were going on. Then I was told that all of the other girls from our ward were going on the 5 mile hike. I still held on to the belief that we could turn back anytime, or at the very least turn back at the road to complete the 3 mile hike. I just responded each time with, " we will go as far as we can and then we will turn back."
Ellie and the other girls from our ward were at the very back of everyone. I hadn't asked the other girls to help, they just came over by Ellie and we started the hike. From the very beginning the path was exactly as it had been described...narrow with foliage on both sides. I was pushing the stroller by myself. It was difficult.
After a few minutes (not more than 5 or 10) I thought it was pretty hard and decided if Ellie and I were going to turn back, that now was the time to do it because it would be just as hard going back and I would be by myself, so I didn't want to go far by myself. I voiced my doubts and several of the girls said they thought it was going to open up any minute and the foliage wouldn't be as thick. Although they had no idea what they were talking about, I held onto that hope. We kept going. The girls started taking turns helping. The girls in my ward that were with us range in age from 12-15, mostly towards the younger ages. The girls worked out a rotating schedule that 2 of them would push Ellie at the same time, when it was an adults turn the adult typically pushed alone.
Then we got to our first stream. It was another time that at first I expressed doubts (verbal or not, I don't remember). I took a look around and saw a few large rocks. I picked them up and arranged a few stepping stones across the river and suggested that we have 4 of us try to lift the stroller over the river. We were able to do it. I think some of the girls got their socks and shoes wet, not a good combo for hiking. That became the point of no return, at least for me. If I wanted to turn around past this point, I wouldn't be able to get back by myself. One other nagging concern I had on the entire hike was, what if one of the 3 bicycle tires on the stroller broke or went flat. We were going through weeds non-stop, I'm sure there were thorns. We could be in big big trouble.
We continued on the path and it really didn't get any wider, just more of the same. There were 3 or 4 more streams we had to carry Ellie across.
At some point I checked on Ellie and realized she was REALLY REALLY hot. I had brought a thin cotton sheet that I was planning on draping over her canopy for shade. I had the girls turn away for Ellie's privacy and I removed her flannel jammie top and draped the cotton sheet over her torso to help cool her off.
We were getting tired and hot but we kept going. I knew soon we would be coming to the road, which would be my chance to turn back. I was planning on giving the girls a choice, do you want to continue helping Ellie to finish the 5 mile hike, or Ellie and I can turn and go down the road, either way was fine with me. When we got to the road a runner from the group up ahead came back down the path to check on us. The girls said we were doing good and they just kept pushing Ellie, so I never asked them if they wanted to proceed on their own, we just kept going.
At this point the terrain changed. This is where the path got wider. All of the wheels were actually able to be on the path. This was a HUGE improvement. However, the path became much steeper and it was getting hotter. We kept going. We were slow, but constantly moving forward.
We were headed up the mountain on switchbacks. At one point way up ahead (and what seemed to be waaaayyy up the mountain) the group up ahead had stopped and was waving and shouting to us. We waved and shouted back. It was fun to see them, but we realized exactly how much higher we still had to go and it was a little overwhelming. On we went. Several times the leaders would to a "power run" up a big hill, meaning we would tell the girls to hurry up or get out of the way and one of the leaders would run as hard and fast up a big hill pushing Ellie as far and fast as they could go (which was probably only like 10-15 seconds).
At least one of the girls ran out of water, thankfully we had some extra. When we thought we were getting to the top, a girl from another ward was coming back down the path. We stopped her and pumped her for information. Mainly: how much farther, is it closer to 10 minutes, 30 minutes or more to reach the summit? She told us about 10 more minutes (but it was closer to 20 at least), and she told us there was a waterfall at the top. The waterfall sounded glorious, I wanted to take my socks and shoes off an get in and put my head under the waterfall. She was going to go past us and go back down the path that we had just come up. She was all by herself. She thought this was the way back to camp. She did not realize that this hike was a loop. She thought she was just catching up to the group ahead of her. We stopped her and made her come back up with us, because no one else had passed us going down.
We got to the summit and were sorely disappointed. We could see the waterfall, but it was on another mountainside with a huge valley in between us. There was no water to cool us off. We had started hiking at 9 AM. It was now 11:55, basically 3 hours. I think on the schedule it said the whole hike was supposed to take 3 hours. Back at camp they would be eating lunch. The leaders told the girls that if the food was all gone, we would drive them to town and buy them burgers, shakes and fries. This seemed to cheer them up. We were all really hot and exhausted.
Ellie is only supposed to stay in one position for an hour and a half to two hours max. It had been 3. We found a little tiny patch of shade for us to sit in. I laid Ellie down on the ground to give her bottom a break from being in the stroller for too long. The ground was rocky and hard. We sat and relaxed for 15 minutes to give her a break. The girls were antsy to get going, but this was the minimum amount of time I felt comfortable with laying Ellie down. We ate some snacks and drank some water and reapplied sunscreen. I also had everyone turn away again for privacy and I took off Ellie's PJ bottoms also and covered her torso and thighs with the sheet to help with additional cooling.
We started back down at 12:10. The path going down was wide enough for the stroller until we got back down to the road. It was sooooooo much easier going down than up. The wheelchair practically pulled you down the path.
When we got to the road we were unclear as to whether to take the road back to camp or the path. We knew we weren't too lost, we figured if we took the road we would get back to camp. Ellie and I waited on the road and told the girls to go down the path just a little and see if they could see any signs. One of the leaders had the task of being the LAST person on the hike and collecting all of the signs. At this intersection there were no signs. After about 30 seconds the girls called that they found a sign down the path, so we knew which way to go. I was disappointed because I was looking forward to an easy road to push the stroller down, but instead we were back to the narrow path with foliage on both sides.
As we traveled a little farther down the narrow path we came upon a group of 4 girls. They were unsure that they were on the right path. Because just around the corner the path turned around backwards and had switchbacks going back up a hill. It felt backwards and the wrong direction. We assured them that we had seen the sign and we were positive we were on the right path. They said that they had said a prayer and then we showed up.
When we got around the corner and the path did a 180 and started climbing again, it was very disorienting. But there was no other paths. We knew we were going the right way.
There was only 1 river to cross on the way back down and it had a narrow bridge.
As we approached camp a leader and a girl had come back up the path to check on us. We said we were doing good.
We saw the cabins ahead and knew we were approaching camp. I jokingly said to the other leader that I could see the finish line (meaning the cabins). This other leader and I had trained for and run a half marathon together a few years ago, so we had run across a finish line together before.
When we turned the final corner and the meadow came into view, we saw the entire camp waiting there for us and using some rope and a poster board they REALLY had made a finish line for us. Everyone waiting for us starting yelling and cheering for us. We started running toward the finish line and were elated and filled with emotion. It was amazing. It took us 4 hours and 45 minutes to hike the full five miles.
I tried to point out life lessons to the girls along the hike and some I have been thinking about since the hike. I will share some of them with you.
Sometimes in the gospel we are unsure of things. Which way should I go? Am I on the right path? Is the gospel true? There are people (leaders, visiting teachers, friends, family) to help us (like those on the path with Ellie and those who came back to check on us) and signs (promptings) to point us in the right direction.
Ellie's stroller is really tall, when pushing uphill you basically have to look down at the ground right in front of you, it is difficult to look ahead. When you are in the midst of a trial and pushing with everything you've got, you can't see the bumps until you are right on top of them. If you can try to raise your gaze (look to God, see the bigger picture) it will make your path straighter and you can avoid rocks in your path.
Sometimes when you are presented with a trial (hard hike) you don't think you can do it. You become stronger by the time you finish. If people had told me what I had to go through with Ellie by the time she was 13 there would have been no possible way I could have done what I do 13 years ago. But now I can. I have learned and gotten stronger along the way.
Each step in the right direction (on the straight and narrow) gets you closer to your final destination (God).
Keep going. Do not stand still in the gospel. Don't get stagnant in the gospel. Read your scriptures, say your prayers, go to church, etc.
Because the path was so narrow , it was easy to push Ellie off the path. As soon as you notice you've left the path, get right back on the right path. Don't keep going in the wrong direction. If you make a mistake, repent and get back on the path.
The path often gets steeper before it gets easier. We need to prove to God and ourselves that we are going to stick with it.
Sometimes our lives seems like drudgery. Like we are pushing through heavy foliage or climbing a steep mountain. We need to remember that it can't continue like that forever, We need to have faith and hope that God will provide a way (faith that the path will open up).
Sometimes we get to a point in our lives that we truly cannot do anymore for ourselves. We are at a stream and we can't cross it. We need to be lifted up and over the stream. Christ is willing to lift us over the stream when we cannot.
By pushing Ellie, the girls were doing something in "proxy" (in behalf of). They were doing something for someone that couldn't do it for themselves. Just like we do work in the temple for the dead. Or just like Christ suffered for our sins in proxy of us.
We are all going along the gospel path at our own speed. Just because the other campers were able to complete the hike faster than we did does not make them any better. We are all at different places along our spiritual journey. We need compassion for others, not judgmental comments or thoughts. If someone shows up to church smelling like smoke, which is the better reaction: turn up your nose and sit far away from them, or invite them to sit by you, get to know them, and tell them you're glad they came.
Sometimes a runner comes back to check on your spiritual progress. It may be a visiting teacher, family member, church leader, church talk, scripture, or a thought from long ago. It causes you to reflect upon where you are in life. How are you doing? Are you headed in the right direction? Do you need any help?
Faith must be followed by action. I couldn't just say, "I have faith Ellie can make it to the top of the mountain." I had to start walking, that is when the miracles happen. "Faith Precedes the miracle". "Faith without works is dead."
We need to prepare for the trials ahead. I was unprepared for the hot weather. The 5 virgins were unprepared and they missed the wedding. Ellie would have been much more comfortable if I had prepared. We will be happier as we spiritually prepare.
When I looked up at the people ahead of us on the path it was overwhelming. We can get overwhelmed thinking of how far we have to go. There are so many things spiritually that we can be working on: scriptures, family home evening, dinner with family, family history, temple work, food storage and on and on. We need to realize how far we have come, be constantly improving and eventually we will arrive. We cannot become frozen with inaction.
The things we want, such as the waterfall, are not always the things we get. We refreshed ourselves in a different way...with the shade and sitting down, but it was not what we had planned on. God often answers "no" or "wait" or "here is a different way."
One of the girls and I got stung by stinging nettle for the first time on the hike. At first it stung and then the area went numb. It is like sin. At first our senses are heightened and we are warned by the spirit that we shouldn't do whatever it is. he sin causes us spiritual pain. Then after a while we become numb to the action or inaction and can't feel the promptings the way we need and want to.
Looking back at the Timpanogus story...rules are there to protect us. We might get mad or discouraged, but they are there for our safety. Follow God's rules for your own protection.
When we get to the finish line (heaven and God) the hosts of heaven will be cheering us on. We will rush forward and feel our Father in Heaven's love. We will know that we completed the course and were faithful to the end.
Ellie absolutely loved girls camp. It was truly a blessing from above. I know God strengthened both of us to be healthy, make good decisions, have so many people help us and have an enjoyable time.
Thursday, June 19, 2014
Gift ideas for teenager with severe disabilities
Ideas for Ellie’s
B-day
Some of these may not make sense to people outside our family...but hopefully you can get a few ideas
Application clicker
Turns videos into cause and
effect (pauses them after set amount of time) $59 http://www.rjcooper.com/application-clicker/index.html
Early and advanced switch games
$59
Point to pictures (choice making
program) $59
childrens or teenage switch
progression (more than cause and effect) $59
generator for machines
wet suit
better canopy for wheelchair
canopy for red stroller $160
Large bouncer around $189
Beamz $60
Bongo drums $170
Drum $107
Music machine set $230
musical beads $269
switch dice (put in up to 5 dice) $66
lay down activity arch---could
make
wheelchair arch—could make
vibrating snake $30
Footchswitch $19
http://www.amazon.com/dp/B001P5ZX6U/ref=wl_it_dp_o_pC_S_ttl?_encoding=UTF8&colid=1WU9VYURHJSR8&coliid=I2DEIM935V53BU
http://www.amazon.com/dp/B001P5ZX6U/ref=wl_it_dp_o_pC_S_ttl?_encoding=UTF8&colid=1WU9VYURHJSR8&coliid=I2DEIM935V53BU
Floor lamp $86
Moonflower LED light $60
Bubble column $300
Aquarium
Mini LED projector $13
Laser theater $90
Weighted blanket
From the following website… http://rjcooper.com/switch-adapted-gadgets/
Switch adapted CD player $89
Switch adapted mp3 $79
Switch adapted boombox (CD and
ipod) $129
DVD player $249
Call light $69
Monday, March 31, 2014
Pneumonia
2 weeks ago Jason and I had a little cold.
Last week Ellie stayed home all week with a cold. She was needing 3 liters of oxygen all week and I really coiuldn't get her lower. Usually it seems like she gets better or worse.
So on Friday I took her to the pediatrician. (She had started the cold on the previous Sat). He couldn't tell if she had pnemonia from listening to her so he wanted to do blood and chest x-ray. She was also really bloated and we had been having a hard time getting her to poop that week. So he ordered an abdominal x-ray and stool cultures. Since we have standing orders for urine...I took a sample in just "because".
The x-ray showed the beginning of pnemonia so we had to take her to Primary's Friday night. Since we had all of those tests already done it made the ER visit a lot shorter.
They admitted her. Jason had to stay with her since I needed to stay home and nurse the new baby and didn't want the baby getting the hospital germs. It was the first time Jason has taken her to the ER without me or stayed more than 1 night in a row. And the first time I didn't go at all for her whole hospitalization. It was hard to release control. But Jason did great! Ellie survived and everything!!!!
They gave her a few doses of IV antibiotics and then decided to stop. They said if it was bacterial then she would get worse and they could put her back on more antibiotics. But if it was viral antibiotics wouldn't help anyway.
All day Sunday she was down below 1 liter of oxygen (so that was better than the 3 liters she had been at). So they released her Sunday night.
Today (Monday) she is still needing oxygen. Less than 1 liter while awake. 3 liters while asleep. She is doing good. But we haven't been able to get her off oxygen so we can't send her back to school. She is also coughing up a bunch of junk. Not that she has a cough, the junk in her lungs is making her cough. So we are suctioning out a bunch of stuff.
She does have a fever today...so I am hoping that is not a sign that she is getting worse. But her oxygen needs have not increased and that will be the big marker.
Last week Ellie stayed home all week with a cold. She was needing 3 liters of oxygen all week and I really coiuldn't get her lower. Usually it seems like she gets better or worse.
So on Friday I took her to the pediatrician. (She had started the cold on the previous Sat). He couldn't tell if she had pnemonia from listening to her so he wanted to do blood and chest x-ray. She was also really bloated and we had been having a hard time getting her to poop that week. So he ordered an abdominal x-ray and stool cultures. Since we have standing orders for urine...I took a sample in just "because".
The x-ray showed the beginning of pnemonia so we had to take her to Primary's Friday night. Since we had all of those tests already done it made the ER visit a lot shorter.
They admitted her. Jason had to stay with her since I needed to stay home and nurse the new baby and didn't want the baby getting the hospital germs. It was the first time Jason has taken her to the ER without me or stayed more than 1 night in a row. And the first time I didn't go at all for her whole hospitalization. It was hard to release control. But Jason did great! Ellie survived and everything!!!!
They gave her a few doses of IV antibiotics and then decided to stop. They said if it was bacterial then she would get worse and they could put her back on more antibiotics. But if it was viral antibiotics wouldn't help anyway.
All day Sunday she was down below 1 liter of oxygen (so that was better than the 3 liters she had been at). So they released her Sunday night.
Today (Monday) she is still needing oxygen. Less than 1 liter while awake. 3 liters while asleep. She is doing good. But we haven't been able to get her off oxygen so we can't send her back to school. She is also coughing up a bunch of junk. Not that she has a cough, the junk in her lungs is making her cough. So we are suctioning out a bunch of stuff.
She does have a fever today...so I am hoping that is not a sign that she is getting worse. But her oxygen needs have not increased and that will be the big marker.
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