Our Daughters Story
November 30th 2006 was a day that we will remember forever. We were pregnant with our second child, a girl that was due in November of 2006. Our pregnancy was normal or much like that of our first daughter. The only real difference was this baby tried to come early several times, a month before our actual delivery date. When the pain would start, we would head to the Hospital but because it wasn’t quite time for the actual delivery, they would stop the labor. Her water never broke so we just assumed all of this was normal. It was around the second time labor started that we were closer to our delivery date (the date we were told was safest for the baby) when the Dr had us schedule a day to go ahead and induce labor. On November 30th, 2006, we arrive at the hospital for the scheduled day, and everything was completely normal. Labor was induced, her water was broken, and we had Alexandria who weighed 6lbs 7oz, coming in a couple pounds lighter than our first daughter. There was not anything that seemed any different during the birth of Alex and our first daughter. We stayed the normal time at the hospital and then we were released to take Alex home. We were excited, not too nervous because we had been there done that you know, everything was great! Fast forward several months when Alex began to try and crawl, and we noticed she would kind of drag the right side of her body. She never really got up on all fours, she kind of had the left arm up at times but mainly army-like crawled. Because of her age and the fact that she was still learning, we just felt like it was probably normal and didn’t think much about it. Another couple of weeks, maybe a month had passed, and she wasn’t progressing which really sparked our attention. We decided to make a visit to the pediatrician to have him look at her. The pediatrician recommended we see a neurologist to have her checked out, so we did that too and this is where everything came to light. The neurologist examined her, watching her and how she moved and such, he said I think we might need an MRI to look at her head. As you can imagine, this news sent a worriedness and anxiety through us, but we held onto the hope that everything would be fine.
The MRI was completed shortly after, and we were back for the results. As soon as the neurologist walked in we knew something wasn’t right, it was one of those parent feelings when seeing the look on the Dr’s face. He said, your daughter has suffered a stroke and has damage on the left side of her brain which he proceeded to show us the images from the MRI. He suspected this happened when Alex was in the womb even though nothing was recognized as abnormal. The next several months would have our family in an out of the hospital for testing to determine if anything more was happening with her. After the first video EEG Alex had, we discovered she was having seizures, over 100 a day, although they were mostly staring spells and not physical shaking seizures it was still scary to think about our baby girl going through all of this. Alex was put on seizure medication and while the medicine did seem to help for the first few months, we were quickly at the max dose. Her body would regulate to the meds, and they would stop working after a while causing the Dr’s to increase the dose to keep the seizures under control. After being on 4 different medications over the course of a year or so and all of them not working after reaching max doses, the neurologist said we needed to consider a surgery option. The surgery that was recommended would be a left hemispherectomy. The surgery involved disconnecting the left hemisphere from the right hemisphere to prevent the damaged (seizing) side of the brain from sending signals to the good right side hemisphere. I can tell you as a parent this news was like a kick directly in the gut, we were so terrified and worried about the outcome. The Dr. assured us that because the left side of her brain was already damaged, she wouldn’t lose any additional motor skills. He did tell us she may never walk or talk but of course we wouldn’t know until seeing how she progressed.
On August 18th, 2008, we arrived at the hospital for the surgery. It was a very long day and one of the scariest of our lives. The surgery itself took about 5 hours and she did really good but did need some blood during the operation. Thankfully her moms blood type was the same and Alex was able to receive blood directly from her mom. The days ahead were super tough, we spent 13 days in the hospital, and it had its ups and its downs. There were multiple spinal taps to check for blood in her spinal fluid and just intense swelling and discomfort around her eyes. The years ahead after the surgery involved many types of therapies to help with motor skills, speech and overall strength building. Unfortunately, the success of the surgery to stop her seizure activity was only about 3 years with the seizures returning but medicine did seem to help this time around. Alex does not have any use of her right hand and has right side weakness in her arm, leg and right foot. I am thankful to say that Alex eventually did learn to walk with AFO braces and talk, and today is an almost 16-year-old amazing young lady! Although she will not be cleared to drive due to her vision problems from the stroke, Alex is mobile, talkative and full of life! She has 2 sisters, two puppies and entire family who loves her!
Life has been a struggle for our family. Shortly after buying a brand-new home about 20 miles outside the city, we found out we were pregnant with Alex. Just three years after purchasing the home we were forced to sell as my wife had to quit her day job to care for Alex, and to run her to the hospital in the city two to three times a week. We ended up renting a home closer to the city so the travel wouldn’t be as far, and so the payments wouldn’t be as much. We also applied to have Alex on disability insurance because her medical expense alone and her medicine would have been unaffordable. One of the medicines was $34 thousand dollars per year which there would have been no way we could get it. I don’t write about all of this for pity, part of life is about the good times and certainly the bad times too and I think both are important to share. The good thing about the disability insurance was the coverage for her care and medications but the downside is for any child under 18 the parents income becomes a factor. If we made too much, she would lose coverage, if we made too little, it was tough to cover our normal expenses. It really is the downside for parents with a disabled child on disability coverage through the government. We felt locked into a fixed income bracket without the ability to “better ourselves” being held captive over the disability coverage. Anyways, that is a whole other blog post for another time, but it is so frustrating!
We started this Toy business to give our kids a fun an exciting way to learn something new while helping others. Alex is a part of printing, picking and packaging your orders. She loves to be a part, she loves helping others and feeling needed. We appreciate your business very much and thank you for reading about one of the biggest hurdles in our life.
I want to end the blog with sharing a photo of Alex on this blog post, and a link to her journey from birth through her surgery. (see below) We are thankful for all the family and friends support through-out our journey and most importantly thankful to God for seeing us through!
A&V Treasure Store will donate 10% of its monthly sales to the Epilepsy Foundation. For more information click the link here: https://avtreasurestore.com/pages/epilepsy-foundation-donation-partner
Be sure to check out the Epilepsy Foundation here: https://www.epilepsy.com/
To see a video of our daughter’s journey, visit this link: https://photos.app.goo.gl/iezBSBq7qhmj5jhe9 (**caution** post surgery photos may be graphic to some)
Anthony & Veronica
Owners of A&V Treasure Store