On August 25th of 2009, life as I knew it came to an end, and life as I would come to know it began. I often refer to that day as my last as a child. It would be the following day, the 26th, that I would grow up.
Daddy Head and I took a trip to Tulsa, OK for a conference in order to receive a time of refreshing. Bear was no herself, sleeping all the time, and having to be woken up to eat. Not like her, my champion, quick nurser. Little did we know.
On the following Monday, my baby girl was gone, no longer to be the same again. She lost her voice, lost her smile, lost her ability to track objects. It would take months before these things would return for good.
When she began to jerk in a strange manner, I knew something was wrong. After speaking to my mother in law, we came to conclusion that she was having a strange reaction to an ear infection or a cold. How I wish that was true!
After two more episodes the next day, a visit to the pediatrician and a youtube video, Daddy Head, Grammy Head and I made the trek to Cardinal Glennon Children’s Hospital in St Louis, MO. Being accused of overreacting to a case of gas, we spent 4 hours in the emergency room, only to be taken serious when she had another episode.
It was around 10am on the morning of the 26th that I received some of the most devastating news of my life: Infantile Spasms. The doctor calmly told me the best that she could that Bear would never be the same again. I hear words like developmental delay, mental retardation and epilepsy, all foreign to me. You see, this was my perfect baby, the one I had hoped and prayed for. I had so many dreams and so many plans for her. All gone, broken, shattered.
The next 6 weeks went by so slowly yet in a blur. Daily injections of a medicine that cost us around $2500 a piece became the new norm. 5 am heel sticks, blood pressure checks and twice a week therapy replaced going out of the house. The medicine took out her immune system and any kind of sickness could kill her. Life stopped as we worked to stop the seizures. At the end of the 6 weeks. the seizures returned…
A trip to Cleveland and then to Memphis would put us back on the shots. My already chunky monkey of a daughter would blow up like a balloon. A new medicine was added to our repertoire to keep the seizures at bay. And it worked! Bear hasnt had a seizure since the end of October 2009. But the story was over.
The new medicine that Bear was put on, Depakote, which usually makes you more hungry, ripped up her stomach. She became so sick that any kind of solid food would come back up 2 hours later, undigested. All she could eat was Mommy’s Milk. Shouldn’t have been a problem, except Lion was on the way and Mommy’s milk supply was dropping fast.
Bear lost 5 pounds in about a month. After a trip to Cardinal Glennon again, all seizure medicine was stopped since her EEG had been normal for over 2 months. She has still not had any seizures, and for that we praise God. We had to put her on Prevacid, which she received the highest dosage possible in order to get her to eat solid foods. And once she found out that she could keep it down, Mommy’s milk was a thing of the past.
New issue: head shaking. Thought for sure the seizures had returned, but thankfully her neurologist determined that she is one of less than 1% that has a rare reaction to Prevacid of head shaking. All is normal again since we stopped the medicine.
Bear is still developmentally delayed, but catching up quickly. Through the course of all that she went through, all kinds of blood tests and whatever, we have to come find that she has a rare genetic mutation called 14 q 12 micro duplication. It is believed that the delays we are seeing have not as much to do with the seizures as it does the mutation. She is one of only 9 in the world that has been found with this mutation and all showed delays in the same areas as her: speech and gross motor.
At the age of 20 months she had both her first word and her first steps. I am sure there will be no stopping her now. I just stand back and keep cheering her on. After all, that is what Mommy’s are for. She has given me one of the greatest adventures in this life, and I hope to have many more.
