A lot has happened since my last post. Our youngest, Caedyn, has been diagnosed with epilepsy with the possibility of developmental delays in her future. At a mere 5.5 months old, this is so hard to swallow. I am just starting with the, "why me, why her, why us Lord?" questions yet trying to hold firm in my faith that this is all in God's perfect plan for our lives.
On the a.m. of Wednesday, March 10, 2010 Caedyn woke up around 4am just a crabby little lady. I, of course, brought her into bed with us and nursed her back to sleep. From 4am to 6am she was out of sorts. Normally, she is such a morning person that my first thought was, "it is her teeth, today is going to be a L-O-N-G day." In fact, that day was the longest, most horrifying day of my life. I leaned over to give my crabby girl a good morning kiss and she was just staring at me. All I saw was the dark color of her pupils. Then the jerking began. She got real rigid and turned blue. I yelled for Jeff and told him to call 911. Our little girl was having a seizure. After about 3-4 minutes she came to. Those minutes seemed like hours. Her blue face turned a very welcome pink but she was real groggy. Jeff had called our neighbor to come and get the boys. Thank goodness for wonderful neighbors. Angie got the boys ready for school at her house while we awaited EMS. I rode to the hospital with Caedyn with Jeff not too far behind. We made it to the ER seizure free and got checked in. We met with residents, students, nurses, you name it. After hearing from one resident that the first seizure was a "freebie", I knew this was going to be a long journey. I wanted to smack him in the face. The doctors asked us the same questions over and over again. Yes, she has been healthy, no she has not had a fever, no this has not happened before (that we know of). Seriously, does no one read a chart? Anyway, after much frustration and knowing the fact that this seziure was her "freebie", we were sent home.
On the way out to the car with much anxiety, Cae seized again in the parking lot. We ran back through to the ER. Now, people were listening. Now, she had their attention and we knew this was the beginning of a very new life for all of us.
So there we sat in the ER for nearly 12 hours. 12 HOURS! Apparently, the largest hospital in Grand Rapids, MI didn't have one bed to admit my child into. As we sat and waited, we talked to specialists, admitting physicians and registration. The time felt like hours as we sat and waited. Then, it happened again. Jeff ran out of the room screaming for some help and it wasn't until he got really angry and yelled, "Hello!!! My daughter is having a seizure!" That the physicians and staffed waltzed in. Once again, turning blue, they had her on 02 as we all sat and waited for her to come out of it. Thankfully, after more than 5 minutes, she did.
As the hours passed Caedyn would have three more seizures. Three more, "what the heck is going on and who is going to find the answer?" moments. Jeff and I sat together after one of the last ones and just prayed together. Prayed that the Lord would keep our daughter safe from harm and give us the strength to deal with our world that seemed to be crashing down before us. As Christians we are called to lean on God and cast all our worry on him. You don't know how hard that really is until you are faced with a situation like ours. But we knew and still know, God has a plan.
After an CT scan, labs, EEG and MRI, Caedyn was diagnosed with epilepsy and potential developmental delay (although, she really is on track so far). She was started on Keppra twice a day and we are currently weaning down her valium. We have been educated by the doctors on how to respond in case of a seizure with Diastat.
Now, we are home. One would think being home would be wonderful. It is not. I live in constant fear of another seizure especially as we wean her off one of the anti-seizure meds. With Jeff gone for work, that leaves me home alone. Alone with my three precious children and alone with the fear another episode will arise while my husband is half-way across the country.
I am trying to hold tight that the Lord is in control and he had this life changing occasion on his agenda long before I was even born. I was given Caedyn for a reason. She has epilepsy for a reason. This has done nothing but strengthen our faith in God and our marriage. Our friends and family have been astoundingly supportive. We are so thankful for all the prayers and well wishes. I would ask that you continue to lift Caedyn and our family in your prayers. `These last five days have truly made us realize that life is God's greatest gift.
Joshua 1:9 "Be strong and of good courage; do not be afraid, nor be dismayed, for the Lord your God is with you wherever you go."
Phil 4:13 "I can do all things through Christ who strengthens me."
On the a.m. of Wednesday, March 10, 2010 Caedyn woke up around 4am just a crabby little lady. I, of course, brought her into bed with us and nursed her back to sleep. From 4am to 6am she was out of sorts. Normally, she is such a morning person that my first thought was, "it is her teeth, today is going to be a L-O-N-G day." In fact, that day was the longest, most horrifying day of my life. I leaned over to give my crabby girl a good morning kiss and she was just staring at me. All I saw was the dark color of her pupils. Then the jerking began. She got real rigid and turned blue. I yelled for Jeff and told him to call 911. Our little girl was having a seizure. After about 3-4 minutes she came to. Those minutes seemed like hours. Her blue face turned a very welcome pink but she was real groggy. Jeff had called our neighbor to come and get the boys. Thank goodness for wonderful neighbors. Angie got the boys ready for school at her house while we awaited EMS. I rode to the hospital with Caedyn with Jeff not too far behind. We made it to the ER seizure free and got checked in. We met with residents, students, nurses, you name it. After hearing from one resident that the first seizure was a "freebie", I knew this was going to be a long journey. I wanted to smack him in the face. The doctors asked us the same questions over and over again. Yes, she has been healthy, no she has not had a fever, no this has not happened before (that we know of). Seriously, does no one read a chart? Anyway, after much frustration and knowing the fact that this seziure was her "freebie", we were sent home.
On the way out to the car with much anxiety, Cae seized again in the parking lot. We ran back through to the ER. Now, people were listening. Now, she had their attention and we knew this was the beginning of a very new life for all of us.
So there we sat in the ER for nearly 12 hours. 12 HOURS! Apparently, the largest hospital in Grand Rapids, MI didn't have one bed to admit my child into. As we sat and waited, we talked to specialists, admitting physicians and registration. The time felt like hours as we sat and waited. Then, it happened again. Jeff ran out of the room screaming for some help and it wasn't until he got really angry and yelled, "Hello!!! My daughter is having a seizure!" That the physicians and staffed waltzed in. Once again, turning blue, they had her on 02 as we all sat and waited for her to come out of it. Thankfully, after more than 5 minutes, she did.
As the hours passed Caedyn would have three more seizures. Three more, "what the heck is going on and who is going to find the answer?" moments. Jeff and I sat together after one of the last ones and just prayed together. Prayed that the Lord would keep our daughter safe from harm and give us the strength to deal with our world that seemed to be crashing down before us. As Christians we are called to lean on God and cast all our worry on him. You don't know how hard that really is until you are faced with a situation like ours. But we knew and still know, God has a plan.
After an CT scan, labs, EEG and MRI, Caedyn was diagnosed with epilepsy and potential developmental delay (although, she really is on track so far). She was started on Keppra twice a day and we are currently weaning down her valium. We have been educated by the doctors on how to respond in case of a seizure with Diastat.
Now, we are home. One would think being home would be wonderful. It is not. I live in constant fear of another seizure especially as we wean her off one of the anti-seizure meds. With Jeff gone for work, that leaves me home alone. Alone with my three precious children and alone with the fear another episode will arise while my husband is half-way across the country.
I am trying to hold tight that the Lord is in control and he had this life changing occasion on his agenda long before I was even born. I was given Caedyn for a reason. She has epilepsy for a reason. This has done nothing but strengthen our faith in God and our marriage. Our friends and family have been astoundingly supportive. We are so thankful for all the prayers and well wishes. I would ask that you continue to lift Caedyn and our family in your prayers. `These last five days have truly made us realize that life is God's greatest gift.
Joshua 1:9 "Be strong and of good courage; do not be afraid, nor be dismayed, for the Lord your God is with you wherever you go."
Phil 4:13 "I can do all things through Christ who strengthens me."
Hey Jen, I just came upon your blog for the first time today. This story is heartwrenching. We certainly have been praying for you these past few days, but to read the story makes my heart ache. I can't imagine how terrible that day was for your whole family. I hope as the days go by you are able to figure out the right medications to keep Caedyn stabilized. God's blessings on you.
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