Tuesday, March 30, 2010

Hopeful for Answers

After meeting with the neurologist today, we are hopeful that we can get to the bottom of Caedyn's episodes. We found that the 1000mg dose of Keppra daily was making her CRAZY (really, ever seen a raging 6 month old? She was out of control!) with crying fits lasting well over two hours and uncontrolled seizures. So, we are decreasing her Keppra (hopefully, we can get our smiley little girl back) to 600mg a day, staying on the Valium and adding Topamax, a med commonly used to treat adult migraine but also has proven helpful in treating infant seizure and spasm. We have a 24 hour video EEG scheduled for tomorrow already to pin point exactly where the seizure activity is starting from. We are hopeful that Dr. Umfleet gets the answers he is looking for. We are hopeful WE get the answers we are looking for! So, for now we wait. The seizures may still happen while we adjust meds so we need your prayers for patience and trust in the physicians treating Cae. We may look into second or third opinions in the future as we have a couple people that know our family and friends that are willing to weigh in on her diagnosis. We are thankful that we have such connections!
I am also grateful to have such an understanding employer and very supportive work family. I could not get through this if I had to worry about my job. Everyone at South Pavilion Internal Medicine is wonderful and I appreciate everyone going above and beyond their daily duties to pick up my slack!! I am also so thankful that Jeff is home. He may not be working, but he is home and not on the road. I knew I picked a good one when I picked Jeff! We are truly blessed and know that God will provide for us despite these tough times.
So, this is the most recent update. I will post pics and more after her EEG. She is sure to look stellar with all those wires wrapped around her head! Thanks for the prayers!

Sunday, March 28, 2010

Roller Coaster Ride

I think Jeff and I better get used to one step forward, two steps back for a while. It has only been a few weeks and we are on such a roller coaster ride of emotions. Caedyn had two seizures this past Thursday - exactly two weeks from her last. Can't life just be easy? We were really hoping that the meds would keep her seizures at bay, and really, they have for the most part. However, I don't know how much of this roller coaster I can ride! We just start getting comfortable and BAM! another seizure to make us terrified again. So, after increasing her Keppra to 200mg twice a day and still decreasing the Valium, she seems to be tolerating this well. She is not having any adverse effects to the increased meds, thank the Lord, and doing great.

Scratch that...as I am writing this. Caedyn had another seizure. Do we ever get used to this? No. Is it something we need to learn to accept? Obviously. So, we called the Dr. yet again and he upped her meds to 250mg twice a day. I am hopeful and prayerful that this will keep her episode free from now on. I can't help but wonder if tapering her Valium has anything to do with the increased seizures. I will make sure to check with the Dr. on that Monday.

On a more positive note, Caedyn rolled over on Friday. It was a joyous day in the Hennip household! It was more exciting because Dr. Umfleet was concerned that Caedyn has some developmental delay due to a diagnosis of Periventricular Leukomalasia (say that ten times fast). He was concerned that at six months she still wasn't rolling over or showing much interest. Well, we have learned to take what doctors say with a grain of salt. I never really thought that she was delayed, but when the idea is put in your head, you can't help but analyze every developmental milestone. So, she is so far on track developmentally. We can't be more thankful.

Please continue to keep us in your prayers. Please pray that we can get Caedyn's seizures under control and that all her tests come back normal. Please continue to pray for our family as each seizure is an emotional setback. We are so thankful for your prayers and continued support!

Saturday, March 20, 2010

JPS Basketball

Cam started basketball at Jenison Middle School a few weeks ago. It is kind of an introductory class to teach 1st and 2nd graders the rules of the game. It is kind of funny to watch. Everyone wants the ball and they all try to aim for the basket despite the fact they are at least 2 feet too short. Cam seems to like it and Case enjoys running around and hanging out with his buddy, Bryce. Every year we try to keep Cam involved in some sport to see what he likes and dislikes. Next year, when Case is old enough to participate, we are going to be so busy!!

Friday, March 19, 2010

Opened Doors

We have been episode free for a week now and boy does it feel good. I also feel as though I am jinxing myself by saying anything. Kind of like at the office when the phones are quiet, we have learned to never say, "wow, the phones are quiet today" because inevitably, they start to ring off the hook. So, I say the first statement with much hesitation but I am so thankful.

We aren't sleeping real well these nights, especially with Daddy gone. I think Caedyn can sense when I am tense and aprehensive about the evenings alone. However, we have not really been alone. I am so very grateful that Grandma Kreuze has spent nearly every night this week with us sleeping on a bed in the living room. Just having the extra adult there puts my mind at somewhat of an ease. The boys have loved having the extra "grandparent time" as well.
Jeff and I have talked some about him finding another job that keeps him closer to home. While I know that we shouldn't rearrange our lifestyles because of Caedyn's needs, I really feel like I need our family together. His construction business was so busy at first after he was laid off but in the last few months the calls for work have pretty much ceased. I have always had faith that God will provide for our family, allow us to keep the bills current and the mortgage paid, but it is so hard to remain faithful when unemployment is much less than you are used to. So, the opportunity for him to work with this transport company seemed like a good idea. We could make all our ends meet and then some. However, from the get-go I had much reservation about him being gone so often at such a crucial time in the kids lives. Plus, selfishly, I had grown to love having the extra hand and wonderful dinner on the table after a long day at work. Now, since our life changing event, it is not so much for selfish reasons that I want him home but simply because I need him and our kids need him home. I struggle with asking so much of him because I know how much he wants to support his family and having no job can make him feel like a failure. I hope he knows that I never have thought of him in that way. I ask that you continue to pray for our family and pray that a job opens up for Jeff that will keep him closer to our family throughout the week. I am still very faithful that God will provide and where one door closes, another opens!

Just a tad too small, cute nonetheless!

Grandma Hoekwater made this summer outfit. She made a 12 month size but in two months there is NO WAY this will fit. It is so adorable. Unfortunately for me, this one will go to someone else. I think 18 months is a little more Caedyn's size!
She started her own little "clothing line" called Caedyn's Rose. She has been busy finding patterns and just the right material for each little outfit. So far, all the grand "girls" have reaped the benefits of grandma's talent. Keep 'em coming, mom! The outfits are priceless.

Wednesday, March 17, 2010

Children: A source of happiness and heartache

I was listening to the radio today, praying to gain a little encouragement for my continually anxious days and nights. The hosts were talking about parenting and how we are only loaned our children here on earth. They were talking about the myth that having children makes someone happy and can bring happiness. While this is so true most days, children can bring some heartache as well. One of the hosts was referring to his teenage son discovering independence by being mouthy and disrespectful. Of course, the three of them were chuckling because we have all been there. Those of you that are raising kids or have raised them know exactly the kind of heartache they are referring to. I felt like this show was talking directly to me. We have been through immense heartache this last week. Followed by this heartache comes the pity party and anger as we wonder why God would totally uproot our "perfect little family". It is true, despite all we have been through, that our kids are a source of immense happiness in our lives. They are loaned to us by God to help us gain the knowledge and experience that this cynical life can dish out sometimes. Children help keep a good balance and remind us of how incredibly blessed we are. We are called to raise our children in the faith and know that each child, no matter how different they are, are put into our lives for a reason. Having a child with an illness or special needs does not mean we are being punished at all. It just means that God has such faith in us as parents and knows that we can do the job and do it right.

Tuesday, March 16, 2010

Better Days Are Ahead

Since I am off from work this week, I have a little time with my cherub on my lap, to skim through some pictures I took earlier this month. These pictures remind me just how precious life is and how quickly it can change. I smile when I see Caedyn's dirty squash face and know that there are those better days ahead. Free from so much worry and anxiety about each passing hour. Worrying really begins when we become mothers, doesn't it? We worry every day about our precious children and what their future holds. At least I do. I worry about my kids, my husband, my family each and every day. However, it is a different worry when you have a sick child. It is only takes one split second to remind us that we are not control of our destiny, God is.

After a couple scares last night, today was a good day. Caedyn took at 2 1/2 hour nap this a.m. which has been unheard of these days. You would think it would be a restful change for me to have a sleeping baby, but I was glued to our newest big purchase, a video monitor. I am sure this uneasiness I feel will slowly fade away, but for now, it makes me feel better monitoring her every move.

My best friend, Lana has a similar story to tell. Her son Cole is not a stranger to the big "s" word and she has been a Godsend. She is my saving grace. She totally understands how I am feeling and gently reminds me when I am being ridiculous. I am thankful for that. I am thankful for her and the fact that we can both grow on these life journeys together. She gives me hope that there are better days ahead. Life goes on and we need to make the best of every day.

Sunday, March 14, 2010

Life: God's Greatest Gift

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."