***January 14, 2014***
We are here! Our morning started early. We flew out of Austin airport at 6am, changed flights in Atlanta, and arrived at the airport in DC around 12:30.
We went straight to the NIH, and got Cody and Kayla admitted.
Once we were in their hospital room, Dr. Porter and Nicole came in to get the paperwork started, and signed.
Dr. Porter went through the 10 page consent form, line by line. Parts of the consent was scary to hear, parts gave us hope to hear, and parts made me realized how smart these doctors and scientists are at the NIH.
With not much time to eat good meal all day, we finally got to the Children's Inn at 6:30pm and had FOOD! We are ready to go to bed early tonight. The kids are not required to stay the night in the hospital room every night, unless instructed by the doctor. Tonight we are staying at the Inn. We have to be (across the parking lot) at the NIH at 6:45 in the morning. Cody and Kayla start the morning with blood test, followed by hearing tests, swallowing tests, ekg tests, and a few more. Tomorrow will be a very full day.
At the Inn tonight we met a father of another NPC patient. His son is 23 and is also participating in the trail. This is his 5th visit here to receive the drug. They are from Rhode Island. We didn't meet his son tonight. The dad said, his son was already in bed for the night. Cody is excited about meeting him tomorrow. The father was very nice. It was a welcoming new friendship since both his and our families share the same journey.
Oh, one of the nurses told Kayla that it might snow this weekend. That is all Kayla is talking about now.
***January 15, 2014***
Appointments, tests, appointments and more test!
Cody and Kayla did great with all of them.
We knew Cody and Kayla had already experienced some hearing loss due to NPC. Today, through their hearing tests, the tests showed a slight additional loss. (more with Cody than Kayla) They looked real good as I watched their swallowing test through an x-ray. NPC causes trouble with swallowing. Both of the kids are doing very well with their swallowing :) We will not have test results from the other tests till later this week.
Kayla was still tired from yesterday's long day. Cody, although he appeared to me to be tired, he still had all the staff and doctors laughing. "He is a charm", "He is so funny" " I love him" That's our boy! Hopefully, Kayla will bounce back to life tomorrow.
They will be sedated in the morning and go into the OR to have the lumbar puncture for the saline. They will come back to their hospital room for recovery. They can rest all day after the procedure.
We ate dinner at The Children's Inn tonight. Different organizations, group, or churches cater in meals several times a week for the families staying at the Inn. We ate at a table with two other NPC families, whose kids that are also participating in the trail.
We are receiving many emails, texts, and messages through FB and this website. I can not reply to all, so please know WE THANK YOU, and love hearing the encouragement and support!!!!
***January 16, 2014***
The kid's day started early (again!).
Cody went first (good big brother), he was sedated and had his LP infusion. When he was taken to recovery, Kayla was then taken back for sedation and LP infusion. They both did great! There is always a risk of having a "LP head" (bad headache) after an LP. Cody and Kayla got back to their room, sat up and order food. They were hungry :) They had to stay close to their room because they had blood draws every hour till 6:00pm. We went to the library in the hospital. They had dvds, cds, video games, along with books to check out. They chose dvds and cds today. They enjoyed their movies and music back in their room.
We came back to the Inn for the night. Their appts start at 8:00am tomorrow, along with a few blood draws. The nurse had to reassure Kayla that she will have plenty of blood left.
We look forward to the weekend, so our schedule will slow down. We hope to take the Metro into town, and see the "real world" again.
***January 17, 2014***
Today final slowed down some. Cody and Kayla each had 1 to 2 appts. Kayla's last appt at noon was rehab. They had her doing a lot of things with balance and gait. Towards the end of the appt, she said, she can't do anymore. She was too tired. I knew she was, as well as Cody. We got them back to their room so they could rest for the rest of the afternoon. They each had a couple of blood draws today. Besides the fatigue, they are feeling good. To reward their strong determination they had all week, we took them tonight to Dave and Buster's in Bethesda. Scott and I welcomed the break from the NIH as well. This Saturday and Sunday they each have only one blood draw each day. Monday is a holiday, so there is not anything scheduled. We hope to "sleep in" late this weekend.
***January 18, 2014***
Only one hour at the clinic today, for (only) one blood draw. We were able to sleep an extra couple of hours this morning, woohoo! We took the shuttle at the Children's Inn to the mall, and grocery store. The kids had fun. Cody went to his favorite store, Hot Topics. Kayla had her nails painted. When we got back to the Inn, we watched a movie, and napped. Scott and I are wondering if we will ever feel rested, lol. This evening we cook our own supper at the Inn. Finally, homecooked food. Kayla helped me cook. She loves to cook. Tonight we each did our own thing....Kayla painted in the art room, Scott and Cody watched Forrest Gump, and I facebooked.
Today in the mail, Cody and Kayla each received a card from their classmates. The students at Lexington Schools are the BEST!!!! The kids were both so excited to get the cards. I think they were starting to miss their friends, so the cards came at a perfect time :)
***January 19, 2014***
Scott took the kids to the hospital this morning for the one blood draw they needed today. We stayed at the inn for the whole day.....very relaxing day. We met another NPC family today. It was a mother and her son. I talked a while with her about the challenges our kids have, and have gone through with NPC. It was refreshing to have a conversation with someone that is in my "exact" same shoes. Tomorrow we do not have to do anything at the hospital! The kids seem to be rested from this past week. Tomorrow they will do some school work. Tuesday the temps are going to be in the teens, with a chance of snow. Brrrr
***January 20, 2014***
Very quite day here at the Inn. Kayla baked a cake, and Cody visited with new acquaintances. We took a taxi into town, for a couple of hours. An organization catered pizza for the families here at the Inn, along with DC cupcakes. Kayla always loved watching DC Cupcakes reality show, when it was on TV. The kids worked on some of their school assignments. Tomorrow it is back to the hospital, with their first appt at 9:00am. Up to 3 inches of snow is predicted to start falling around midday tomorrow. One more week to go.......
***January 21, 2014***
You can see from the pictures, IT SNOWED!!! It is very cold, and dropping to 10 degrees tonight. The kids had a couple of appts this morning at the clinic. We made it back to the inn soon after it started to snow. Cody and Kayla enjoyed getting out in the snow. Snow is one of the things we miss from TN.
We will go stay the night back at the hospital. Cody and Kayla will get sedated in the morning. They will have an LP fusion, this time to get the Cyclodextrin drug, for the first time. Scott and I feel comfortable with the kids getting this drug. We still have that "uneasy" feeling, because we are their parents. 4 more days and we get to go home....but who is counting?
***January 22, 2014
The kids both did great with their procedure this morning. Cody was back in the room, up and listening to his music. He was even "head banging" at times. They both ate lunch, watched a movie, and had their blood draws every hour till 6:00pm.
Kayla has had a rougher day. Last night, close to midnight, she had a seizure. This morning she was tired before the procedure, and being sedated, because of the seizure. This afternoon she fell asleep for a nap. She had another seizure shortly after she went to sleep for her nap. Dr. Porter actually walked in to check on both of the kids at that time. It was comforting to have him there, even through Scott and I have had to handle seizures on our own. Dr. Porter called for the neurologist to come to the room. Kayla's vitals were fine. It was just another seizure. The neurologist increased Kayla's seizure medicine for tonight, and for tomorrow morning. The neurologist will also contact Kayla's neurologist in Austin to discuss possible medicine change. The increased meds made her drowsy for the remainder of today. Kayla seems to respond quickly to Cody during her post seizure, as she is regaining conciseness. Today was no exception. Cody kept saying, "Kayla, can you hear me." Kayla's first response coming out of her post seizure, "Cody, you are annoying!" We all laughed and said, "she's back!" Tomorrow they will have a few blood draws, chest x-rays, and an appt. at the gait lab (rehab).
***January 23, 2014***
We all slept well last night. Blood draws started early this morning. Cody and Kayla both had chest x-rays. Cody had an appt. in rehab. They canceled Kayla's appt in the gait lab (rehab). Kayla did have an EEG, since she had those two seizures. The increase in her seizure medicine had her drowsy, wobbly and off balance when she walked today. Her speech is even a bit slurred. She will go back to her regular dose of meds tonight. I hope that helps her balance and alertness tomorrow. Kayla's nuero doctor in Austin, is out of the country. Tomorrow, the neurologist here at the NIH will talk with us. She will make her recommendation on changing Kayla's seizure medicine. We can either wait till we can talk to Kayla's doctor in Austin, or let the neurologist here change it. Tomorrow, we also find out the dates we will come back to the NIH next month. The next visit will not be as long. It will be for 4-5 days.
The kids are excited to hear that back home, in Texas, they have a chance of sleet and snow tonight. All their friends are excited that there is a chance school will be closed tomorrow. I hope it does snow for all the kids. You do not get many snow days in Lexington, Texas.
***January 24, 2014***
We took the kids to the clinic this morning for their one blood draw they had today. We met with Dr. Porter, Nicole, and the neurologist. Cody and Kayla's first visit for this trail went well. The only bump, was Kayla's seizures. We have added a new medicine to her current seizure medication. Hope this helps reduce her seizure activity tremendously! Tomorrow morning the kids have one blood draw in the morning, and they are DONE for this trip. We are all excited to go home tomorrow. It has been a fulfilling two weeks. We have learned additional information regarding NPC, and about the trail (treatment). We have met new friends. We have been given hope that this drug can be successful. We have to be realistic through this trail. This is phase one of the trail. Although seeing instant results is what we pray for, in a trail, things have to move slow (small doses) to keep all kids involved safe. Safety is NIH's #1 priority. Cody and Kayla, and the other 6 kids currently enrolled, have all had positive visits, procedures and with some, results (even though small).
The kids will go back to school on Monday. I know they will be tired. They were not able to do much of their school assignments while we were here. Their schedules were too busy, and any down time, was just that, down time and resting.
We will have 3 weeks to rest up, and then we will be back :)
***January 26, 2014***
We are home! Today we stayed home and enjoy the warm Texas weather. Cody and Kayla are excited to see their friends tomorrow at school. We will return to our regular routine, till February 16th. That is when we fly back to the NIH for the kid's 2nd dose. It will be an one week trip.
We are in this journey together, as one!
***February 22, 2014***
~~Many people have been texting me, and sending me messages, asking for an update. Sorry, I had to put off posting an update. As you read this update, it will explain the delay.~~
We arrived in MD Monday, 2/17/14, on Kayla's 14th birthday. There was still about a foot of snow on the ground. On Tuesday morning Cody and Kayla got admitted into the hospital, and had a blood draw. They also both had a hearing test. They both had additional hearing loss, from last month's test. Their hearing test showed that Cody had hearing loss in his right ear (grade 1), and Kayla had hearing loss in both ears (grade 1). We knew that the cyclodextrin drug can cause hearing loss. In the protocol for this trial, they set a "grade scale" for the audiologist to rate any hearing loss. The scale is graded 0-4. The kids were graded 1. The first group of kids in the trial had received 200mg of cyclodextrin for 3 months. There was no hearing loss on any of these patients. The next group, which included Cody and Kayla, increased to 300mg of cyclodextrin. Cody and Kayla were the first patients to receive this "increased" dose. Since Cody and Kayla, there has been 5 other kids receive the increased dose. Cody and Kayla were the first to return for their hearing tests. I was told, the protocol says, continue with current dose, if hearing loss is at a "grade 1". Dr. Porter talked to us. He did not feel comfortable giving Cody and Kayla the drug this month. He wants to wait till the other kids, that received this same dose, come back and have their hearing tested. If any of them show hearing loss, then Dr. Porter, and the committees for this trial, will follow the protocol for all patients (too much to write). There is a possibility that only Cody and Kayla will show hearing loss at this dose. That would due to a "genetic thing", and they are more sensitive to this drug. What happens in this scenerio? Again, too much to write, but there are options for Cody and Kayla to stay in the trial.
We are scheduled to return on March 10th. At that time, we will know about the other patient's hearing test results. Dr. Porter will also have some of the "research" blood tests back in March. There are many factors the NIH has to consider, study, review, ect. As I have stated in earlier posts, all the kids' safety is NIH's number priority.
We were asked not to post any of this information till Dr. Porter could talk to all the families in the trial. Scott and I, and the families in the trial have many questions. At this point, Dr. Porter has to have more test results to answer those questions. We are anxious for our March appt. The trial will continue.
So how do Scott and I feel about all this information? We are trying to stay positive. We know our kids are affected regardless of the other kid's hearing test results. We also know this trial (drug) was our hope to hang on to for our children's life.
We are STILL on the road to a cure!
***March 10, 2014***
We flew out Sunday to the NIH. We stayed last night in Bethesda at a hotel. Got here, to the NIH, this morning. Cody and Kayla each had a blood draw. They got admitted to their hospital room. Nicole came and did exams on each of them. They got to meet Julia, another girl in the trial. Kayla had been waiting to meet Julia. The girls share the same birth month, and birth year, as well as the same "journey". Her and Kayla have a lot of the same interests. Cody and Kayla had their hearing test this afternoon. There was not any additional hearing loss for either of the kids. The hearing loss they had from the cyclodextrin drug given in January, had not restored. We know that the few kids that have come back to have their hearing checked, did not have any hearing loss from 300mg. Just our babies. Dr. Porter, Scott and myself, along with the kids, had a big talk. What do we do from here? Options: give Cody and Kayla a 300mg dose again, knowing that dose has and probably will cause more hearing loss, or back them down to 200mg dose, not knowing if they will still be highly sensitive to cyclodextrin, and that dose could possibly cause hearing loss, or skip giving them the drug again this month. Shuffling through, what could be, what if, and some tears, Scott, Cody, Kayla and I made the decision to have the kids back down and get 200mg. Tomorrow morning Cody and Kayla will be sedated, and have the LP fusion of 200mg cyclodextrin. We are praying HARD that this dose will not cause any more hearing loss for them. It has been a very tough and emotional day for us. As a parent, you want to do what is best for your child. What if, what is best for your child today, might cause them problems tomorrow?
We need lots of prayers for Cody and Kayla, to stay safe. And for all the brave kids, and parents involved in this trial. This trial is still in its early stages. It still as a ways to go. They know from lab animal studies, this drug can work for the NPC community. We all have to continue to persevere, and we will.
*** March 11, 2014 ***
Today went great! Cody and Kayla had their LP fusion. No problems. We stayed at the hospital during the day. The kids had blood draws all day. Scott and I tried to rest when we could. Cody listened to music, and watched a movie with Kayla. Kayla went to the craft room and painted. They also tried to rest. We all felt better today. The kids will have hearing tests on Thursday. Praying for positive results. The weather was nice today. It is suppose to get cold Thursday. We wanted to take the kids out somewhere, one day this week. This is their Spring Break, and would like to take them sight seeing or something. Tonight, The Children's Inn had a room available, so we have moved over to the Inn to sleep. The kids were glad!
***March 12, 2014***
Cody and Kayla's first blood draw was at 10:50am, this morning. We all got to sleep in :) When we sleep at the Children's Inn, you do not have nurses coming in and out of the room during the night. The Neurologist came in today, and did an exam on the kids. The neurologist and I talked about Kayla's seizure medicine. Since the increase, in January, Kayla was not had another seizure. However, Kayla stays very drowsy, and her feeling are sensitive. She almost, at times, apprears to be over dosed on her medication. The neurologist decided to reduce one of the seizures medicines, with the goal to wean her off one of the medicines.
Today wasn't too busy. Kayla and I cooked spaghetti tonight. Cody saw a girl today at the Inn that had guages, and tattos. He didn't get to talk to her. I am sure tomorrow he will hunt her down. He was excited, and wants to talk to her about all the bands he follows. I have met, this week, a couple from College Station, and a couple from Bryan. It is always a great feeling meeting people from your hometown here in MD. Tomorrow morning Cody and Kayla will have their hearing tested. The kids say, they can not tell any change in their hearing. We are praying the hearing test comfirms that.
GREAT NEWS! Cody and Kayla's hearing stayed the same. No hearing loss at the 200mg dose. Thank you Jesus, and thank all who have kept the kids in their prayers!
Today the kids had two blood draws, and their hearing tests. Short and sweet day with smiles on everyone's face.
It got very cold here, with strong winds. We had plans to take the subway to Pentagon Mall in VA. We changed our minds, and decided to adventure out to a closer mall.
One more night, and then we go home.
***March 15, 2014***
We are home! We will go back April 13th.
For now, Cody and Kayla are in a group by themselves in the trial. In a few weeks the other kids will move up to 400mg. Cody and Kayla will stay at 200mg for now. Before we go back, we will talk to Dr. Porter and Nicole. Dr. Porter will (finally) have the research blood draw results next week. This is from the kid's 300mg dose they received in January. Dr. Porter will meet with all the committees and discuss these results. He will look to see how much 300mg benefited Cody and Kayla's storage levels. If there is a good result on the levels, they MIGHT recommend we give the our kids 300mg again. They want Cody and Kayla to benefit from the drug. They also, and foremost, want the kids to stay safe. Whatever their recommedation, they will leave the finally decision in mine and Scott's hands.
***March 27, 2014***
Had a great phone call today from Nicole at the NIH. Still a lot to sort through, and data to look at for our kids. They did get Cody and Kayla's blood draw results from January, when they got the 300mg dose. Although 300mg caused some hearing loss, the bio-markers they look at showed a positive result from the 300mg. Cody and Kayla go back to the NIH in a couple of weeks. They will stay at 200mg, to keep their hearing safe. Dr. Porter is still waiting and gathering data and test results. He will continue meeting with the approiate committees, and discuss the best path for Cody and Kayla, going forward.
Scott and I were happy to get this positive news. It can get tough some days, and ANY reassuring news gives us a fresh outlook.
***April 14, 2014***
We got to the NIH last night, after a few flight delays. We are staying at The Children's Inn. The kids were admitted this morning at the hospital. They had one blood draw, and their hearing tests. Their hearing test both were stable, no additional loss. Kayla showed a slight hearing increase. They said, it was very little improvement. We will take any amount of improvement. Dr. Porter and Nicole did their regular exams on the kids. Everything is looking good.
We will stay at the hospital tonight. Cody and Kayla will be sedated in the morning. They will have their LP, and get 200mg of Cyclodextrin.
Nicole did not have any updates from our phone call on March 27th.
The kids were tired today from yesterday's long travel day. They are the first appts booked in OR in the morning.
Today was a good day, not too busy.
Dr. Porter has a motto for this trial, "boring is good."
That means, the kids get bored, because everything is going the way it is supose to, no problems.
***April 15, 2014***
This morning Cody and Kayla had their LP fusion. They both did great. They had their regular, after procedure, blood draws all day. Dr. Porter always takes out some spinal fluid on the kids, before he puts in the drug. I think he does that to help keep the fluid level more stable. The spinal fluid usually flows right out. On Cody, however, Dr. Porter said Cody's fluid drips out, slowly. This time Dr. Porter wanted to figure out why. He already knew some theories. He looked back at Cody's blood counts since 2012. He noticed Cody's protein count has always been high, but not dangerously high. He knew this was not caused from NPC. He looked at Kayla's, and her's was normal. The high protein count could explain the slow spinal fluid drip. There are a few things that can cause this. They said, Cody does not show signs/syptoms of these problems. Cody will have an MRI on Thursday of his lower back. Your spinal fluid runs from your lower back to your brain, and continues that rotation. One thing that could be happening with Cody is, along that route from the lower back to the brain, he could have a "pocket" that is clogging the path way. The MRI will show the motion of the fluid flow. I still need to get more infomation. Sometimes it is better to not get too much information when you are not sure what is causing something. I would rather wait till the MRI, see if there is anything going on. then I will have my list of questions. They said, there is always that possibility that they will not see anything wrong. Cody might just have a high protein count, and not anything is causing it.
Remembering my daddy's words, "don't worry till there is something to worry about."
We had dinner at the Inn tonight. The kids enjoyed a clown that came in, and did some magic tricks. Well, Cody enjoyed heckling him.....guess Cody is too old for clowns.
"Staying Strong and Carrying On"
***April 16, 2014***
Cody and Kayla started their morning with a blood draw, and this afternoon another blood draw. The Neurologist came in and did an exam on both of them. Talked to the Neurologist some more about Cody, and the MRI tomorrow. The protein count is high in his spinal fluid. They do not foresee anything serious and dangerous causing this. The MRI will check his spinal area in his lower back. NPC causes Cody to struggle with his balance. To help him walk, Cody walks with his shoulders back, and lower back pushing forward. This is causing his spine to shape towards the front of his body. This could be a cause the slow flow of the spinal fluid. Cody took a long two hour nap today. I had to wake him up for his neurologist appt. I wish Kayla would take naps. She really would benefit from them since she has seizures. Kayla had a seizure last Thursday. She had not had a seizure since January. Her seizures have always been upper body shaking seizures. This evening for supper, we ate at the Children's Inn. Kayla was sitting at the table eating. I looked at her, and she was staring straight ahead. I called her name, but she did not respond. I shook her shoulder, and her head slightly leaned to the side. Although this was not the type of seizure she has had before, I knew it was a type of seizure. It didn't last long. I will talk to the Neurologist tomorrow. She will possibly want Kayla to have an EEG. We had a good day today, except for this evening's event. It was upsetting to Scott and I, but we know NPC doesn't play fair, so we have to just keep fighting to win! Thankful for everyday.
***April 17, 2014***
The kids started their day with a blood draw. Cody had his MRI. I'm not sure when I will get results from the MRI. I am hoping tomorrow, before we leave. I am very proud of Cody doing the MRI without being sedated. If you know Cody, you know he doesn't sit still for long. For him to lay still, in that "tunnel" for an hour is a lot for him. He told me he had to puch the panic botton a few times, but toughed it out. I talked with the Neurologist today about Kayla's episode yesterday. She scheduled Kayla an EEG for tomorrow morning, before we leave. We might have to change all of Kayla's seizure's medicines. We just might not have the right ones for her. Scott and I like to reward the kids, for persevering all week. We went tonight into Rockville, MD for dinner and a movie. We saw the movie "Heaven Is For Real". We all enjoyed this movie.
Tomorrow morning, one blood draw for each Cody and Kayla. Then Kayla will have her EEG, and then we go to the airport. It has been a good week. We are adapting to the schedule better. We did have some curves in the road this trip, but we are back on a straight road.
***April 18, 2014***
The kids had their one blood draw this morning. Kayla had her EEG. I did not get results from the EEG. The neurologist mainly wanted the EEG so there would be a baseline to compare any future EEGs. Cody's MRI did not show anything abnormal. Everything was normal. Dr. Porter said, he was going to talk to the Neurologist. They want to do other tests to figure out what could be making Cody's spinal fluid have a high protein count. We are home now, and will go back on the 18th. The kids are always glad to get home and see their friends.
Happy Easter from The Ruthven!
***May 19, 2014***
5th trip to the NIH for the trial......
We got here last night. Scott was not able to come, because he had to work. Scott's mom, Trink came with us this trip. This morning the kids had one blood draw. The patients in the NPC trial are now outpatients, instead of inpatients. The only big difference is the kids will not have the same hospital room all week. We will not have to spend the night at the hospital. That being said, tomorrow morning we need to be at the hospital early. The kids have their LP fusion for the drug tomorrow. They are still receiving 200mg. Today Cody and Kayla both had their monthly hearing tests. Their hearing was good, stable (same as last month). Cody has had a cold, the past few days. That caused some low readings on his hearing tests. The audiologist really feels his congestion interferred with his hearing. She is not concerned that it was caused by cyclodextrin. We had dinner at the Inn tonight. We will go to bed early tonight.....long day tomorrow.
***May 20, 2014***
The kid's LPs went well this morning. It was a long, slow day. The kids had blood draws every hour, till 5:40. They have to start back with the blood draws, tomorrow morning at 8:30. They will only have two draws tomorrow. Cody is starting to get over his cold/allergies. This afternoon Kayla started feeling bad and running a fever. Dr. Porter came and did an exam on her. Apparently, Cody passed his germs to Kayla. She is feeling better this evening. There is something here in MD's area that gets my allergies every trip. Guess we need to start taking lots of Claratin before the next trip.
The kids had a good day! We do miss Scott not being here with us. He is planning on coming next month :)
***May 21, 2014***
It was a very easy day today. The kids each had two blood draws. We came back to the Inn between the draws. We had lunch, and all 4 of us took naps. After the kids last draw, we went into town to eat. It always feels good to get away. Kayla was feeling better today, no more fever.
***May 22, 2014***
Another easy day....
"Boring is good", Cody and Kayla are staying true to the trial's motto.
The kids each had one blood draw this morning, and we were done for the day.
We went to a mall for a while, this afternoon. The kids both love going to a mall.
Tonight we will start packing up. We fly home tomorrow afternoon. Cody and Kayla each have one draw in the morning and an appointment with the neurologist.
***May 23, 2014***
We're home :) We had a good visit this month. The kids had their one draw this morning, and their appt with the neurologist.
Kayla's liver count was high before we left. We all had colds while we were there. Dr. Porter feels her liver count was elevated because of her being sick. I will take her Wednesday to her doctor in town. He will do a blood draw and check her liver level. They will let Dr. Porter know the results. I feel her level will drop since she is feeling better, and getting over the cold.
Please continue to pray for Cody and Kayla. Pray for them to keep persevering, and have strength to stay strong while they continue in the trial. I hope Scott and I can give them a special summer vacation. A reward for them!
Cody will graduate next Saturday on the 31st.
CONGRATULATIONS CODY!!! WE ARE PROUD OF YOU!!!!
***June 17, 2014***
First, I want to say congratulations to Cody and Kayla. Cody graduated May 31st from high school. Kayla is officially a freshman in high school. We are very proud of both of their accomplishments!
We arrived in WA on Sunday afternoon. Monday morning the kids were checked in to the NIH. They each had one blood draw. Monday afternoon they had their hearing tests. Both tests were good :)
We met with Dr. Porter, and signed the consents for this month's drug injection. Dr. Porter did an exam with Cody and Kayla.
This morning the kids were both sedated and received 200mg of the Cyclodextrin drug, in their spinal fluid. They both did great, no problems.
This afternoon, at the Children's Inn, Mike was here with his guitar. Cody and Kayla always enjoy singing with him. We went into Bethesda for dinner.
Cody and Kayla's bodies were tired tonight. I can tell when their bodies are "worn out" because their walking is more off balance.
Tomorrow will be two blood draws for each of them.
We might go on a field trip with the Children's Inn to a baseball game in DC. The Houston Astros are playing :)
***June 18, 2014***
Today was a slower day. Cody and Kayla each had two blood draws. Although the day was slow, it was tough on Kayla. She was having lower back pain, and a headache from her LP yesterday. Lumbar punctures can cause these problems. The kids have never had to deal with these discomforts in the past. Kayla is feeling better this evening, and I am praying she will be 100% in the morning.
Since Kayla was having a rough day, we did not go to the baseball game tonight.
We had to change rooms here at the Children's Inn. The air conditioner in our room stopped working. Once we moved to another room, and were nice and cool, Cody took an 2 hour nap.
Good night from Maryland!
***June 20, 2014***
We are home :)
Yesterday and this morning Kayla was still having a headache. This morning, before went left, Dr. Porter gave Kayla a bag of fluid through an IV. He wanted to hydrate her really well for the flight home. He also gave her 400mg of ibuprofen. It all worked in her favor. She did great flying home, no headache. She was still headache free when she went to bed tonight.
Cody was glad to be home, as always. He always has plans to go and do things.
Kayla had a rough few days this week, but other than that, the kids had a good week. They had good test results.
We go back in 3 weeks. The kids are excited because their aunt is going with us next month.
***July 17, 2014***
Came back to the NIH on Sunday. Scott couldn't come this trip. My sister Dianne came with us. The kids have been excited. This is the kids 6 month retest visit. Monday morning we started with their blood draws. Then, they had their hearing tests. Cody and Kayla's hearing have both stayed stable. Tuesday was their day for their LP to get Cyclodextrin drug. Kayla decided she wanted to stay awake, and have the procedure in her room. I was so nervous about her doing the procedure awake. Dr. Porter numbed her lower back. She did great! Cody chose to be sedated. Cody's procedure takes longer. His spinal fluid comes out very slow. This makes his LP procedure last longer. It would be a longer time that Cody would have to lay still, if it did the LP awake. They both did great and had no side effects from the LP. We stayed at the hospital all day, and the kids had their blood draws. The first appointment Wednesday morning was Cody and Kayla's swallowing tests. Kayla's swallowing was fine. Cody's swallowing showed that he is starting to aspirate when he swallows liquids. This is a problem in NPC kids. This is something we have not had to deal with till now. The xray showed that when Cody swallows liquids, some of the liquid goes down his airway to his lungs. If this continues to happen, bacteria will start to grow in the lungs and cause pneumonia. We will now have to mix "Thicken" in all of Cody's drinks. Thicken is a mix with no flavor, and when mixed in a drink thickens it. This was one of those "knock you down" moments for Scott and me. We just keep going along each day, and then NPC has to remind us that it wants to run our life. We call things like this "bumps in the road". We will go over this bump, and keep moving forward!
Thursday morning was easy. Cody and Kayla had their one blood draw, and they were done for the day.