Baby Steps

Tuesday, August 18, 2015

Back to school

It's that time of year again. The season I used to love best. The air is cooler and crisp in the mornings. The smell of the air will always remind me of so many things I've tried to forget. First seizures, first thanksgiving spent in the hospital and months of stress, sorrow and sadness. We do everything we can to make new memories around this time of year but the bad ones never fail to creep back in. Tomorrow, Piper will be four and I don't think I'm ready. Every year is more challenging even with all the blessings we have. Someone told me the first year was the hardest, I think it gets harder every year.

Preschool starts tomorrow on her birthday. As I plan her party and get her stuff ready for school it hits me that I have been doing the same thing for years. Back to school preparing consisting of me adjusting her wheelchair, stocking up on diapers and pacifiers. Sadly walking through the school supply section of Target wishing I could buy her new markers and crayons and we could color together and talk about school starting. I try not to let it get me upset but it's so bittersweet.

Once again I buy birthday clothes instead of toys because buying infant toys is just too much anymore. I plan her party and pray I don't cry when I see other kids running around playing and enjoying life like she can't. I pray that she doesn't have a seizure while we sing happy birthday and that maybe she will smile a couple times. I pray that she knows how much we love her.  It will be even harder this year because it's the first year we won't have family here to celebrate. Something about having family here makes me think for a moment things are normal, things are happy.  We are so thankful to have another year with her and try to think of the happy moments not the months she has struggled.


Since her surgery in March things have been incredibly hard. Seizures were worse than ever and we spent every waking hour praying, begging, and pleading for some relief. We have cried more and been stressed out more than we have in years. We finally decided to add a new seizure medication in hopes that it would get her back to baseline. We also decreased the VNS and think it was the reason for all the gut wrenching screaming seizures. After three weeks, things are finally under control again. PRAISE GOD!!! We can leave the house again!!! We are so thankful but of course it comes with other challenges.

With the months of horrible seizures she spent most of her days seizing and sleeping. Her appetite decreased and most of the seizures were so strong she would throw up during. We knew last week when we took her to the GI doctor the dreaded conversation would occur..gtube (feeding tube). I prepared myself and hoped by some miracle she had gained some weight over night but knew it would most likely be the main topic of discussion, and it was. Piper is so underweight that she is no longer on the growth chart. Our doctor is very concerned that without proper calories her bones and body will not develop as they should. The doctor knows we don't think she is ready for a gtube and suggested doing a high calorie diet for 2 months and if she gains 6lbs we will continue to feed her by mouth.  If not we will need to get a feeding tube placed in her stomach provide her with nutrition.

When you only weigh 28 lbs, adding another 6 is a lot. My first thought was I am already having trouble lifting her, what will I do if she gains 6 lbs?! I will be working so hard to fatten her up just to work even harder to lift her. When she was little I remember thinking I won't have to worry about her being too big to lift for a long time, but it's here already. Even with working out and lifting weights it has become a big challenge for me.


There are a few good things that we learned, a typical 4 year old is supposed to get 1200-1500 calories a day and she is nowhere close to getting that. We just didn't know and now we do so there is plenty of room for adding calories. We met with the dietician and she gave ideas on how to increase calories without increasing volume.We think she can do it as long as we stay on top of calorie counting and finding recipes. This also means all of her food needs to be cooked by us to avoid added sugar and processed food which can increase seizures.  It's another thing added to our already rigorous schedule and it means we can't be lazy. We pray she can gain this weight and that we don't go crazy trying to keep up with it all!

The next few months will be emotionally hard for us but we have great things to look forward to. Seizure control will allow her to go back to school and it is great for all of us. I have been able to start serving at church in the elementary program and it's great to be able to do that again. Justin is serving with the middle/high school students which he hasn't been able to do in 4 years. We are training for a marathon/half marathon in October and are so excited. We are in the process of buying a wheelchair van and should have it in a couple months. We have made it our own family tradition to go to the mountains every year for Thanksgiving and are looking forward to doing that in a few months. We have new friendships that are growing and it's something we have needed so much since we moved.

Thank you all for the messages and words of encouragement during the past few months!








7 comments:

  1. Hi.

    I'm Mardhia from Malaysia. My baby, Adriana is also diagnosed with Aicardi Syndrome at 8months. It was really hard back then. I truly understand your feelings, the hardship. Only people has special child would understand how it feels like, right?

    Adriana is currently 18months old, on medication hydrocortisone, chlonazepam and carbamazapine. Oh by the way, I am a single mom. I am very grateful to have Adriana around me. She's also like Piper, loves attention, car rides, peoples visiting our home, but she couldn't be able to see clearly, like you, I always keep praying for miracles to happen! the doctor even said, she could not be able to see, walk, talk. But God's Power, Adriana can say 'mom', some words clearly. she can even speak out her name! Yana Yana..;)

    By the way, my ex husband is very eager to try the cannabis oil, but since it is illegal in our country to import or buying drugs from outside, so Adriana is still taking her typical seizure medications, chlonazepam and carbamazapine. Her spams and seizure is better and under control, i can say better than last year. average spasm 2-3 times per day, and a major seizure attack during midnight, after then she will sleep until the next morning. She's a very happy girl, loves to smile.

    for me, it is very challenging as im taking care of adriana on my own, with family member's help. both my sisters and parent are very supportive. Thank God for that. Adriana cannot sit independently as well. she tends to curving her back and refuse to sit. So its hard for us whenever
    to transport her in the car. So, the only thing I could do is lying her down at the back seat. Luckily in Malaysia's traffic law is not strict as compared to the other countries which compulsory to have a baby car seat. While for her bath time, I put her on top of changing diapers table and she will just lying down on top of it. Maybe early next year I will try to look a better equipment and tools that suitable for her use. Resources for special needs in Malaysia is very limited. Thus, we need to look and buy through online from abroad. Luckily my eldest sister is a doctor, working in Brisbane, Australia. She has help us a lot. She said, if 'all-the-things(treatment&facilities)' are not working for us in Malaysia, I probably will migrate to Brisbane for Adriana's betterment.

    I hope we can sharing some experiences, knowledge, tips and etc. this is my email address mardhiayusof@gmail.com

    may God bless Piper and your family! Love from Malaysia. ;)

    ReplyDelete
  2. After years of being seizure free, I think I owe the world a duty to share this testimony. It could help someone out there who needs to be free from seizures like me.
    It started as a minor seizure. I was scared when I had my first seizure. First it was at the tonic phase till it became more complicated that I woke up in ER. That was when I was 9 years old. I had questions without answers. My friends who never understood what I was going through abandoned me because they were shy, and too embarrassed to associate with me. The seizures became frequent that I had more than 50 seizures a day. For 31 years I took thousands of Western Medication. It got more complicated that I had to make effort so it will not become epilepsy according to research. I went in search for a cure because I was feed up of treatments and drugs. A lot of folks told me there was no cure to seizure; that the best I could get was treatment to manage it, but I just refused to believe them. Thankfully, I read about Herbal medication for seizures and epilepsy cure. I discussed with my doctor, he permitted me to try if it will work because Western Medication had dealt with me badly. When I started using Herbal Medication the seizures was longer frequent! Within a one month, I noticed tremendous changes I never had for 30 years of using English Medicine. After several months of using Herbal medication, I became totally seizure free. For 5 years and counting, I have never had seizure not even for a second. I have been reaching out to people with seizures telling them my story how they can get cured through Herbal medication that worked for me. I got my herbal medication from Doctor Mohan. You may contact the doctor via drajaymohanbose@gmail.com

    ReplyDelete
  3. NATURAL & EFFECTIVE TREATMENT TO SEIZURE
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    ReplyDelete
  4. I had my first seizure. I was in high school and didn't want anyone to know that I had epilepsy. I had seizures on two occasions. I was so ashamed and didn't want people to think that something was wrong with me. I finally got to the point where I told people that I had epilepsy. I came to the place that I realized that I had to own my epilepsy or it would control me. Epilepsy hadn't really affected my life until about 9 years ago after my first child was born... I am a wife and mother of two beautiful children. I have lived with epilepsy for 20 years Yet, my life has been dramatically impacted by epilepsy. I had search for cure online without no hope. I met a Man called DR Lewis hill, i contact him I made an order of his medicine and I do not experience seizure anymore i was cured form it. So if you are in the same situation as mine contact him on this email drlewishill247@gmail.com

    ReplyDelete
  5. WOW ALL THANKS TO DR WILLIAMS I HAVE NEVER BELIEVE IN HERBAL REMEDIES.
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    ReplyDelete
  6. Am One of the happiest woman on earth since my son was cured from the problem of seizure,which he has been having for eight years now,he do have the attack two to three times a week,which is affecting is education and his life.i got the contact of a doctor from the post of one Mr paul thanking him for curing his seizure problem,i got the contact and contacted him then he made me to know that the medication is a permanent cure, and that was how i got the medication which i used on my son,and for six month now there have been no sign of seizure in him again.any one with such problem can contact him on his email drwilliams098675@gmail.com

    ReplyDelete
  7. ALL THANKS TO DR WILLIAMS FOR THE GREAT DEED HE HAVE DON FOR MY FAMILY.This information will be useful for Epilepsy patients who is willing to use herbal medicine. My daughter had temporal lobe epilepsy, She had seizure and had a grand mal with rage episode. Our daughter's seizure is constant throughout the day. We had used several medicine which include: Epilim and Keppra, experience seizure control at the cost of serious debilitating side effects. It was during a casual conversation with a friend that I learned about herbal Dr. William,who uses herbal medicine in curing people from epilepsy,i was so glad to contact him on his email and make an order for his medication, it does not have any side effect. I am so glad to say that she has been seizure-free since July 2015 after taking William medicine. this a miracle cure?contact him for more detail (drwilliams098675@gmail.com) thanks once again admin for such an informative blog.

    ReplyDelete