Baby Steps

Tuesday, April 8, 2014

A day in the life of a special needs parent

I am writing this post mostly to vent but also to give you a glimpse into our visit at the hospital. 

We recently did a routine EEG at Denver Children's hospital. This was something we requested to look for changes in seizure activity and to have new baseline data. We have done this at least 10 times now and I can honestly say this overnight visit in the hospital was the worst. I pray Piper never gets sick because I never want to be admitted here again. 

Just a few of the conversations I had during our stay....

Me (7:30am at the hospital registration): Good morning, we are here to check in for our EEG. 
Receptionist: Great! Thanks for getting here on time. 
(5 min check in)
Receptionist: If you will just have a seat over there it should be about an hour before we will have a room ready. 
Me: So, why did we get here this early? We could have been 45 min late and still had plenty of time?
Receptionist: Yes


Physicians assistant (in the middle of Piper getting leads put on her head and screaming at the top of her lungs) : I would like to review Piper's medical history with you. 
Me: Do you have her medical records from TN that contain her entire history? 
P.A.: Yes, I do, but I would like to hear them from your mouth.
Me: Alright then, but you are going to have to speak a little louder. 

Me: I would like to order lunch for my daughter. She is on a gluten free low sugar diet, so I need green beans, pears and a sweet potato. 
Lunch lady: Oh,I'm sorry those items are too dangerous for her to eat, they aren't classified as soft. The skin on the sweet potato could be a choking hazard. 
Me: I think you can remove the skin. I've actually done it before. 
Lunch lady: Ok, we can TRY. I will have to send other items in place of the two other choices that Piper can handle. 

Here is what she sent 


Me to our night RN: Piper has startle seizures so if we could avoid any interruptions during the time she is sleeping that would be great. She is not sick so there is no need to weigh diapers, check vitals as often etc. How about I buzz you if she has a seizure and otherwise don't interrupt her sleeping. 
RN: ok, sounds good. 
(20 min later after Piper has fallen asleep)
RN: Just checking in on you, I need to know what Piper has eaten today. (Wakes Piper up, triggers seizure)
Me: speechless 

Night RN: If Piper has a seizure lasting over 5 minutes it's our protocol to give rescue medicine. 
me: We don't use that protocol at home and do not feel comfortable giving her rescue meds. Every cluster she has lasts over 5 minutes. According to your protocol she would have been given rescue meds 4 times since we have been here. Did you speak with the day nurse before she left?
RN: Yes, I did and she told me the exact same thing you did. 
Me: So what's the problem?
RN: It's our protocol to administer rescue meds after 5 min. 
me: Looks Like the day nurse and Neurologist didn't follow protocol. 
RN: Oh, I guess you are right. 

Night RN: Piper gets her medicine at 9pm. You are welcome to give her CBD oil because we do not supply that but we can't let you give her fish oil or melatonin supplements. 
me: What? Why?
RN: We have to use our own meds but do not have liquid fish oil.
Me: You just said I can give CBD oil since you don't have it on hand. It's the same situation. Why can't I give her melatonin?
RN: She has to take the pill provided by the hospital. 
Me: She can't swallow a pill. We have to use our powder. Please send your supervisor in so I can talk to them about this situation. 
(30 min later)
RN: You are welcome to give her anything you want. 

Let me add that after all of this she still brought one of Piper's meds in at 9pm. Piper gets 2ml of this med. I threw it in trash and made my own. The wrong dose, seriously??!

Night Nurse: If Piper has a seizure tonight please push the red marker button. 
Me: We have been here for 12 hours and I have already pushed this button many times. She may have seizures I don't hear if I'm sleeping so will the people monitoring the video catch them?
Nurse: You are planning on sleeping?

Day nurse: You have to be in the room with Piper at all times.
Me: No problem
Nurse: That means all day and night, you can't go home to sleep. 
Me: What?? This isn't where I drop my child off for overnight day care??!! Crap, I was looking forward to a relaxing night with my husband. (Ok, I only thought this one but sure did want to say it) 


(After all my attempts to prevent interruptions and startle seizures during the night, the nurse came in at 4am to take her temperature. She was startled, woke up and had a cluster. She was unable to go back to sleep and screamed for two hours. The only thing that calmed her down was getting in the bed with her. Nurse comes in at 6am while I am snuggled up with her in the bed) 

Nurse: What's wrong with Piper?
Me: You woke her up at 4, triggered a seizure and she couldn't get back to sleep.
Nurse: Oh, poor thing! 
Me:You couldn't hear the screaming?
Nurse: I sure did, poor baby! By the way, you can't get in he bed with her, it's protocol. 
Me: I thought we agreed our protocol was no interruptions. Looks like we both are in trouble. 


Me to nurse: Two of Piper's leads have fallen off and I am afraid it will affect the results of the study. 
Nurse: I don't think they are that important. 
Me: You don't think the things that are measuring seizure activity are important to the seizure study we are doing??
Nurse: I'll try to find someone to fix it but no promises. 
Me: I think it's time for use to go home. 

 

Saturday, April 5, 2014

Where does the time go?

Like we always say, time is flying and we wish we could slow things down! Evan will be three months old soon and is learning and changing every day.  We feel like we are new parents for the first time because our experience so far is so much different than with Piper. He is smiling, laughing, cooing, babbling, rolling and loves to stand! He may very well be the happiest baby I have ever been around. We feel so blessed that he is so mild mannered and such a joy to be around. Like I have mentioned before it is a little bittersweet to see him progress so quickly and he has already mastered things we have been working on with Piper for 2 years. We always try to avoid comparing Piper to other children and was easy to do when it was just her.  Watching how he learns does help me think of new ways to work with Piper so I take it as a great learning experience!
 


Many people have asked how we are holding up with two young children. Honestly, (knock on wood) it hasn't been that much harder. I know things will get a little harder when he is mobile but for now things are really good. Once I was fully recovered and back to my busy self it only took a few days to get used to taking care of both of them. Piper is still very high maintenance but Evan is such a good baby so it's not as hard as I expected. Piper hasn't paid much attention to her brother but we noticed yesterday that she becomes more whiny and needy when she hears him or knows he is in the room. Although we don't want her to be upset we are proud of her for knowing something is different! She understands more than we give her credit for.

Piper has experienced ups and downs in the past few months. She was doing really well on CBD oil until our last batch. We changed her dose and saw some bad seizures return. Since her medicine is plant based, every batch is a little different. The ratio for the last batch was different and we think that may be the cause of the changes in seizure activity. We are making changes and already seeing better control. We will be doing an overnight EEG on Monday to see if she has anything new going on.

The past few months have taught us more that we expected. Since Piper's diagnosis we have learned to handle stress, disappointment and heartache the best way we can. It seems like her condition has affected everyone around us and most people just are not able to handle the stress the way we do. It has taught Justin and I to continue to be positive and love each other even more. We do not let negativity weigh us down and chose to surround ourselves with positive situations. We thank the people who can provide that for us and our children. Even with the struggles we are so blessed and extremely happy. We are not saying it's easy but we have an amazing marriage and two beautiful children, how could we not be happy!

Moving to Colorado did something I expected, brought Justin and I even closer in our relationship. We really just rely on each other and trust each other so much. It was scary and a huge leap of faith but we are here and I know that is for a reason. We have found a church we really like and are hoping to get more involved soon. Its nice to get back to a normal routine and to start meeting people again. We are also very excited because we found a house we love and will be closing on it May 1! Living in an two bedroom apartment with two small children has been more than a challenge, especially when Justin works from home. I have been very creative finding places for the kids to nap (hallway, bathroom, closet!) I am lucky Evan is a "go with the flow" type personality because he really doesn't have a choice. I guess being born in Colorado has helped with his laid back personality.  

We have been looking for months for a house that is conducive to Piper's needs. It was hard to find a ranch style house but we finally did. We will have to make modifications like ramps and other things as she gets bigger but we are so happy we won't have to worry about carrying her up stairs. We are so excited to have more space and finally have seperate rooms for the kids! Right now Justin sleeps in the master bedroom with Piper and I sleep in the nursery/office with Evan. It's going to be amazing to sleep in the same room with my husband again!!! It's funny how kids change everything...


We thank you all for the continued support and love!



Tuesday, February 25, 2014

Sick and tired of being sick!

Well the past 6 weeks have been a little different than we expected. Evan was born via Csection and they found a lot of scar tissue and a few other issues. The doctor was able to get rid of the tissue and did a great job. He is perfectionist so it was a longer surgery but we are thankful he took the time to fix everything. Evan had no issues and has been healthy and growing. 

The first three weeks of recovery were going really well and I was recovering much faster this time. The hardest part of the recovery is not being able to lift Piper and exercise for 6 weeks. It's very hard not to go back to a normal routine of taking care of my children. I worked out the whole pregnancy and felt great so not being able to has been a challenge. I go back to the doctor on Friday for my 6wk checkup so hopefully I can get back to normal soon. 

 Everything was going great until last Saturday. I spiked a fever, had chills and other flu like symptoms. Justin took me to the ER (instead of on our valentine's date ) to make sure I didn't have complications from surgery. They did blood and urine tests and really couldn't figure out what the problem was. I had an elevated white blood count in my urine and was treated for a UTI. After 5 days on antibiotics with no relief I went to a doctor to get more answers. He suspected it was a kidney infection and would take longer to recover. He also noticed my liver is swollen and was worried about me having mono. He took blood and I won't know the results until Thursday. 

Piper has also not been feeling well and has spent the past few weeks sleeping the days away. After the doctor mentioned mono it made me think she may have it too. Fortunately, since she has been taking cannabis oil her immune system is stronger and seizures don't get too out of control when she is sick. Hopefully, the test will be negative and she will get back to herself soon. We hate seeing her sick. 

With all the sickness we have worried about Evan getting sick and he has been fine until last night. He was up all night with diarrhea and not eating like normal. I took him to the pediatrician and he has a stomach virus. He is so mild mannered that I knew something was not right. There is nothing much we can do but wait it out and monitor him closely. The doctor advised me to clean and Lysol the apartment from head to toe. 

Justin is the only healthy one around here so we are praying he doesn't get any of the germs going around our house. This is the first time in years I have been sick this long and would really like to get back to normal! We can't complain too much because we have had plenty of help from family who have been taking turns staying with us.  I have also lost 30 of my 42 pregnancy pounds which makes me happy even though it hasn't been the healthiest way :) adios maternity clothes! 

Overall, it has been great having Evan here. He is such a sweetheart and we love him so much. He is the most expressive baby I have ever seen and is very curious. He was lifting his head up looking around an hour after he was born. It's amazing how fast he learns but is a little bittersweet when we have been trying to teach Piper the same skills for over two years. We will have to learn to not let that get to us and be excited for both of our children. Piper is adjusting well and is still trying to figure out who is making all that noise. We are very happy and hopefully will be healthy soon. 



Thursday, January 9, 2014

Evan and Piper updates

Well I am officially sick of being pregnant! I am 39wks and 1 day and carrying a very big baby boy. He is measuring at 8lbs 8oz and could possibly go two more weeks. His due date is Jan 15th and we have a Csection scheduled for the 22nd. I am going to attempt a VBAC but if he is not here by next week we will consider moving the surgery because I am not sure I will able to make it two more weeks. I have been in a lot of pain the past couple weeks so the sooner the better. Overall, this pregnancy has been very easy up until recently so I can't complain much. We were able to see his little face yesterday and I think we are going to have another Justin look alike. We are so excited to meet him and hopefully something will happen soon.



Piper is doing well too. She has been on Charlotte's web since October 24 and we have seen positive results. She is still having seizures but they have reduced in frequency and severity. In July, before we moved here she was having 2-6 clusters of spasms that would last up to 15min each. In the past month she has consistently had 1-2 spasms a day and some days she hasn't had any at all . She has single spasms that last about 3-5 seconds and do not really bother her at all. She has had many days with 3-5 single spasms only. On these days when she only has a few single events she is only seizing for up to 25 sec! She has very good days and only a few "bad days". Her bad days do not even come close to comparing to what we used to see. She recovers so much faster and a strong cluster will not wipe her out for the day.


The most interesting and surprising thing we have seen since we started treatment is her overall health and well being have improved drastically. Before we moved she averaged 4-5 hours a sleep at night, not consecutively. She would sleep a couple hours, wake and have seizures, sleep a couple more and seize again. She never got a good nights sleep and was tired all the time. Now, she is consistently sleeping through the night and if she wakes she is able to get herself back to sleep! She is sleeping up to 11 hours a night without seizing!! I can't explain what a huge deal this is for her. In my opinion sleep issues have always been second to seizure control and this change is unbelievable. She is cutting three teeth right now and is still able to sleep all night. When we moved here we said even if this medicine helps her sleep better it will be worth it.

Her cognitive, physical and visual functioning have also improved in a short time. She is moving her body more and using her arms and hands. She has always had issues with using her arms and hands and has never really used them. In the past two weeks she has used her hands more than ever and has started reaching out for toys etc. She has learned things that we have been working on for years in just a few weeks. Her brain seems to be making better connections and she is able to learn new things. Her muscle tone has also improved. She is almost sitting independently which she was not doing before the move. Her whole body has gotten stronger and continues to do so. Her vision has improved and she is attentive and alert. She can focus on toys and interacts like she never has before. She is vocalizing more and has started making the "ma" sound. She has actually said "ma ma" but doesn't do it purposefully. It is still exciting to hear her making new sounds. All of the changes in such a short time are proof to us that this treatment is helping. We have worked on many of these challenges since she was 6months old with no progress and suddenly in 2 months she is able to do them all. It is truly amazing!





So with the evidence of how this treatment is changing her life we have decided that we will be staying in Denver for as long as it works. We have started looking at neighborhoods and houses in the area because we are quickly running out of space in our apartment. We really love it here and it feels like home. We miss everyone very much but are very fortunate to have family and friends that can visit.

Sunday, November 17, 2013

A father's perspective

Justin wrote this and I couldn't have said it better....



It’s a Friday night at 10 o’oclock and I just got out of bed, unable to sleep due to another episode that disturbs the calmness of an unfamiliar apartment in a new city. The lack of sparkle in her eyes as she enters yet another cluster of spasms tears the peaceful slumber away from my child. Hour after hour, waiting for the next one to come. Counting. Tracking. Watching. There is nothing we can do. They come at all hours of the day. Without warning. Everything is dropped to helplessly watch. Is she still breathing? Does she need emergency medication? When will it stop?
Everyone tells you that having a kid will change your life. I don’t think this is what they meant.
For the past two years, my wife and I have watched our first born seize uncontrollably every single day. Piper was born with a rare genetic condition, Aicardi Syndrome, which resulted in the corpus callosum to never develop and an intractable form of epilepsy called Infantile Spasms. Since the age of three months, she has seized every day. This is definitely not what I expected fatherhood to be. But, I have learned some truisms in these past two years. I have learned what unconditional love really is. I have learned that an education bought at an elite school of medicine does not lead to supreme knowledge. I have learned that you can only rely on yourself and the wise people around you.
Over the past two years, my wife and I have battled for our daughter. Every stone has been turned. 17 doctors, 9 anti-epilepsy drugs, 1 severe diet, 6 supplements, 50,000+ seizures, 1,300 miles, thousands of friends, 1 last doctor prescribed drug that could lead to liver failure. We have learned to live by numbers. Numbers that have altered our perspective on parenthood. Numbers that bring a community together for a controversy.
On August 1, 2013, my wife and daughter entered the state of Colorado. We have moved away from those thousands of friends to join a new controversial community. A community that has become addicted to marijuana. We have moved to Colorado to take part in a movement of parents of epileptic children who are trying cannabis as a last ditch effort to heal their children.  
Marijuana. The word has carries some weight that will not set easy with many of you. Trust me, it was not an easy decision. I too once believed that medical marijuana was a smokescreen for people to use the drug recreationally. Not too long ago, my mind was changed. I learned of a 5 year old girl named Charlotte Figi. Charlotte has Dravet Syndrome, another form of intractable epilepsy. Charlotte’s parents were in a similar situation as us and were at the end of pharmaceutical treatment. Charlotte’s parents then found a group of brothers growing a strain of marijuana with low THC (the only psychoactive compound in the plant) and high CBD (cannabidiol, another compound in the plant). They had nothing to lose. Guess what…it worked. The first dose, Charlotte went a week without a seizure. As a frame of reference, she had 300 the week before.
Hope.
She’s not the only one. Now hundreds of parents, including many from Tennessee, are moving their children across the country to get access to the now named Charlotte’s Web. There’s been some media. Perhaps you’ve heard.  Guess what…it’s working for a lot of kids.
To give you an idea of our expectations, we do not think it will work. But, we don’t think anything will work at this point. Another truism, skepticism. We have accepted that this is our daughter and she has influenced more lives in two years than I have in my 28. She has a purpose, to teach.
Piper started on Charlotte’s Web on October 24th. We give three doses per day in an oil form. For three weeks we have been increasing the dose. It’s never easy.
This week, we have had two newspaper articles and two local news channels report on our journey. Through social media, I have read 600+ comments on these reports and come across 3 dissenters. I don’t know what is coming next, but if you are still reading, I ask for you to remove your assumptions, your fears, and the unknown and ask yourself why.
These past three weeks, we have seen bad days, like today, but we have seen some of the best days. Compared to one of the worst days, Valentine’s Day 2012 – 379 spasms. Three days this week she has had 2-3 spasms. Can we say it is attributed to cannabis? I’m optimistic, but it’s not where I want to be – zero
I don’t know where our journey will take us, but I hope that Piper has fulfilled her purpose and taught you to examine the possibility. I don’t know that we will ever be able to come

Saturday, November 9, 2013

Charlotte's Web First Two Weeks

Piper had her first dose of CW on October 24. We are hoping this is a date we will always remember, a date that replaces the anniversary of the onset of seizures, and other things we would like to forget. To be honest the first two weeks have been rocky. The day after her first dose, I started having symptoms of a stomach bug. Piper did not seem to have any symptoms so I figured it was something I ate. After the initial dose, I didn't see any immediate changes except she was a little sleepier than normal. The next day she looked terrible and had symptoms of a stomach bug too. She slept more than I have seen her sleep in a very long time. I hoped it was the new medicine calming her down and letting her get some rest but it seemed she was just her fighting off a virus. It took five days for her to start feeling better and then she had three excellent days! Halloween was the best day she has every had in her life. She was smiling, giggling and playing all day. She was very aware and responsive to us. I think she was excited to finally have her dada home. She also had the closest to a seizure free day that we have ever seen, she only had on single spasm!  We haven't had that kind of hope in a very long time.

Since Halloween we have had a rough time. We noticed that she was cutting a molar and started seeing an increase in seizure activity. Teething has always been a trigger of seizures but it has been almost a year since she had a tooth come in so we don't remember how bad it is. Seizures have been all of the place and we have seen some pretty rough ones. We have seen tonic "typical" seizures that we rarely ever see. She had 5 in one day and that never happens. We normally see 1-2 tonic seizures a month. We have used "rescue" diazepam multiple times to help her body get a break from the seizures. We noticed three days ago that she has another tooth coming in as well!We are praying that teething is the cause of all of the bad seizure activity and that she will get over it soon. We have heard from a few doctors and the dentist that teething is a developmental milestone. The interesting thing is right after we started CBD oil she has an influx of teeth appearing and we are curious if there is a correlation.

 Since we have so many additional factors like sickness and teething it has been hard to see how well  the medicine is working. We do know that she has never had a seizure free day and she was very close and that is very promising. When she had a break between being sick and teething she has some really good days so we think the medicine is helping but we won't be able to tell how well until she feels better. She is still on a low dose and we will be increasing to her full dose over the next two weeks. We have talked to a few families who saw results after 4-6 months of adjusting dose and weaning pharmaceuticals and this may be the case for Piper.

We have been involved in getting our story out to the public. We were contacted by a reporter from the Salt Lake City Tribune about a week before we started treatment. She was interested in doing a story about us and wanted to fly in to Denver ASAP to interview us. She actually was able to be here for Piper's first dose of the oil and did an interview. The story should run tomorrow and we will send out the link for everyone to read. We also were able to participate in an interview done by the local news in Denver. All of the families who are involved with the Realm of Caring met at the grow and were able to tour the grow houses and see the plants. While we were being interviewed Piper had a seizure on camera and made the news lady cry. I guess it was the right time to have one since they are trying to show people how desperately our children need this treatment.

We continue to pray and have hope that we are doing the right thing for Piper. Even if it doesn't help her as much as we want we have seen how much it has helped other children. I sat next to Charlotte Figi at dinner the other night and could not take my eyes off of her. It is truly amazing what this oil has done for her. She was talking, playing and fed herself dinner. To see where she was in the videos at her worst point and to see her in person, thriving, was truly amazing. We hope that we can at least spread the word about this treatment so that one day every sick child has a chance to try it without having to move across the country.

Sunday, October 20, 2013

Overdue update

Sorry it has taken so long to write an update. Things have been pretty much the same as always here so I haven't had much to write about. We have been enjoying our time here and exploring the city. Justin finally made it out to visit at the beginning of October. After 7 weeks of being apart, it was so good to finally see him. While he has been here we have been able to explore Denver and just spend time together as a family. He couldn't believe how much my belly had grown while he was away! He will be going back to Knoxville on Tuesday and will be making the official move in November.

 Piper's Nana and Papa came out to visit and we had tons of fun and hated to see them go. We all celebrated my birthday and found some great restaurants in town. We went for a hike in Colorado Springs and toured the Coors brewery. I heard the beer was delicious. We are so lucky to have family that is able to visit. Being so far away from family has been a challenge for all of us but we just keep in mind the reason why we are here and it helps. January will be here in no time and we will get to see the rest of the family then.

We found out last week that the harvest is done and that the CBD oil is being made now. We may be able to pick up her medicine on Thursday!!!! This is what we have been waiting so patiently for and it seems unreal that it is finally here. We will go to a new patient meeting tomorrow to learn more about dosing, etc. We are so excited but it is also a little scary. This treatment could change her life but we also know it may not work as well for her. We are praying so hard that she gets the relief she deserves from these terrible seizures. I am filled with so many emotions (pregnancy enhanced) that have been building up the past few months. I will update more frequently because I know you are all as anxious as us to see what happens with the treatment. Please pray that this is finally the answer to this nightmare.

This week we will also go for an evaluation with the early intervention system here to get Piper started again in therapy services. I have been putting it off because it has been so nice to not worry and stress out about getting her to appointments. Her days are never consistent so it was hard to have a normal schedule. They do all in home services here so hopefully it will be a little easier for both of us. I know she needs to continue therapy but its really hard to see her so upset and unhappy. We also will be applying for a waiver that was not available in TN that provides assistance for families who do not qualify for Medicaid. Under this waiver I could actually get paid to be Piper's caregiver if I obtain my CNA. The waiver also provides financial assistance for respite care, nursing services and modifications to your home for accessibility. 

I have felt really good throughout this pregnancy and I am in my 27th week. I have been exercising and keeping in shape to be able to lift and keep up with Piper. So far I have felt stronger than I did before I got pregnant! Imagine doing squats with 30 lbs at least 50 times a day. It is a workout just taking care of Piper! I am just now starting to enter the uncomfortable phase but I still have a lot of energy. We have been seeing a high risk specialist just to be safe. So far everything has been great and we have had no issues. He is healthy and growing fast. He is kicking and moving constantly and is so strong.  He is actually a lot bigger than average so I will be doing my gestational diabetes test this Friday to see if that has anything to do with his large size. Hopefully his growth will level out over the next few weeks because it may increase my chances of having another c-section if he is large. I really don't want to have surgery again since the recovery was so hard but we won't know more until later. We are just happy he is healthy and will worry about the rest of it later. We have been so preoccupied with Piper we keep forgetting that we will have a new little one in just a few months! We are so excited to meet him!