Thank You Lord, I See...

Today, Vada and I went to Peoria. She had a check-up with her Cardiologist, Dr. Bramlett. It was the quickest appointment that we have ever had in Peoria. All good news. Nothing new and we wont go back for another six months!!! Dr. Bramlett still heard the murmur (which we were told was still there following the surgery) but he said that it is really "soft" and not anything for concern. He said as far as Vada's "case" goes, "she is best case scenario".  She doesn't need to have Synagis (RSV) injections this fall and he doesnt foresee any complications in the future. After this next appointment (the one in six months), if all is well, then we may go as far out as a year before having to see him again. We like Dr. Bramlett, he's a good doctor and seems to be a nice man but not needing to see him is a good thing my friends! It signifies more growth and more progress for Little Miss Vaders!

Vada was weighed and measured today and while she hasn't gained any weight, she has grown in length! She weighs seventeen pounds-nine ounces and is twenty-nine inches long! For a girl who was stuck at twenty-five inches for over six months, this too is progress. Actually, I stand corrected, it's growth!

On the way home my heart was overflowing with warmth and happiness. It finally feels as if we have our girl and our life. Things feel safe and "Normal".

I find myself staring at Vada all of the time. Sometimes its with amazement, other times its with wonder and then other times it's been with fear. Today, I looked at her and finally, finally it didn't feel like I was going to loose her. It felt like I could breath again and like that damn elephant that found a resting spot on me had picked its huge ass up and off of my chest. It's nice to take deep breaths again and to not feel some sort of pain attached to them.

My faith in God is here, I haven't lost it and while it has done some teetering throughout these many months of stress and ciaos it has always remained strong.

... and that family that I prayed for as a child... well, tonight as we were getting ready to have dinner God showed me again, how very, very blessed I am. It was like He was screaming at me... "Look at the husband I gave you, the father that you asked for. Look at your daughters, your children, the siblings that you wanted. I have answered your prayers. I was listening... Look."

Thank you Lord, I see. Thank you for all that you have given to me. Thank you for the strength that you have given to me and to my family and thank you for answering all of my prayers.

Prayer Request

At the risk of over stepping any boundaries I am going to be very vague in this prayer request. I believe in the power of prayer and I also believe that by not reveling too much information God will still know who you are praying for-even if you don't.

Yesterday, someone whom my family cares deeply about had a brain aneurysm and is currently in the hospital. She is an amazing mother and friend. She is a strong leader whose love for Christ shines through in everything that she speaks and everything that she does and she is loved, beyond any form of measure, she is loved.

Please pray for a quick recovery for her and for peace not only her but her family and all of her friends who await any and all news about her.

Thank you.

Friends That Pray Together

Isaac and Kathee are two of our closest friends. There are not enough words to describe what they mean to our family. We have laughed together, cried together, worshiped and praised the Lord together. We have watched our families grow in numbers together and exchanged parenting advice on the different do's and dont's together.

We have many friends, friends who at this moment are working in the background to help us make this time easier. We have the Miners who let my oldest daughter stay at their house for the first two days of this journey for Vada. Steve, who has picked up and dropped off the girls for youth group. Clark who took care of our dog when no one was at home and many, many others who are praying and who are asking for prayers. We are blessed to have each and everyone one of you in our lives and we are so grateful to call you all our friends.

I dont have many friends outside of our church family who are comfortable in themselves and their religious beliefs to come right out and ask to pray for others. I personally, think that prayer is a wonderful gift. However, I too dont always ask to pray and going to the Lord, first, is something that I am still working on.

Isaac and Kathee has taught us both a lot about prayer and a lot about going to Christ before anything or anyone else.

Someday, Vada will know the power of prayer. We will tell her of her many journeys. We will tell her about all of the people who prayed for her. We will teach her as well as the other girls that its not just family members who pray together that stay together, its friends too. Someday she will know that she was strong first through Christ. I look forward to that day. It's going to be pretty special.

Last night Isaac and Kathee came to our house. We planned out the next couple of days, talked about life in general and prayed together. We prayed for Vada, for the surgeons, nurses and medical staff. We prayed for Justin and I as parents and Jasmine and Kiliegh as Vada's sisters. We prayed for strength and healing.

The day of surgery Isaac came to sit with us and wait. His humor really helped make time pass by quicker. Justin and Isaac really feed off of each other, which made great company for Justin and great entertainment for me. I was grateful for Isaac's presence.

Isaac and Kathee have two small children so they came in shifts. Kathee came the day after surgery. I have shared many of my deepest fears of loosing Vada over the last two years, with Kathee. As a mother she could understand and as a close friend she could relate. It felt good standing at Vada's crib side with her. We watched Vada silently for a long period of time, but I knew that Kathee was rejoicing inside just as I was.

Vada's Prayer Button

It has been suggested on a  number of occasions from several different people that I send out an email or Facebook message requesting prayer for Vada. I believe in prayer and I would appreciate any and all prayers for Vada and our family during these next few weeks. Prayer for strength and health. Prayer for peace and comfort. Prayer for recovery and anything that I am leaving out.

I have created a prayer button for Vada, it's something that I have seen on many other blogs that I read. I have placed Vada's button with the other prayer buttons that I have posted on my blog. Feel free to copy it and re-post it to your blog or to pass it along for others to see who they are praying for. If your not already following the blog please take a second to do so. I will continue to update the blog on her progress as well as new events in my family's lives and you are invited to check in when ever you feel the curiosity brewing.

As of today there are 20 days before we leave with Vada and head to Peoria, there are 21 days until her heart surgery.

Seven Stitches and A New Way of Thinking

My husband, Justin, called me tonight on his way home from work. It is a fairly common thing for him to do and it is a call that I look forward to each and every time.

We exchanged our "Hello's" and "How are you's" as usual and then he told me how he was escorted to the Emergency room  from work, in a ambulance, today. I waited for the punch line, but it never came.

It took me a second to snap out of the shock that his words had momentarily placed me in. Once I could conjure up a breath of air (apparently I have a tendency to hold my breath when I am upset), I began trying to figure out what today's date was. My thought process had brought me to the conclusion that he must be joking. Was it that close to April Fools Day to "justify" a joke like this? No, it was still a couple off weeks off... but surly, if he were telling the truth he would have called me when the accident had happened..., Right?

After assuring me that he was in fact telling me the truth Justin then began to explain why he hadn't called me.  Basically, he thought that I would bring Vada to the hospital with me if I couldn't find someone to come sit with her while I went. He didn't want to have her exposed to sicknesses when it was something that we could prevent. I understood his explanation. He was probably correct, I more than likely would have brought Vada with me -if I needed to- to be with him. At this point I was mad. I was mad that he never called. I was mad that he took my choice and opportunity to be with him away and in a very child like manner, I hung up on him.

There was a thirty second period before my phone rang again. He was calling me back. As I was looking at his face in the picture that I had saved to my phone I realized what was actually bothering me. It wasn't anger that I was experiencing. It was one of my greatest fears presenting itself- loosing him.

To make more sense, I have to go back about three years ago.This was about the time when Justin started working for SSAB, his current employer. Prior to starting this job he was working as an electrician. He had been hired into SSAB,  through the electrical company as a temp. He had been hired on to do some sort of safety "like" inspections, due to an accident that had caused the death of another SSAB's worker.

Justin had been at SSAB for about a month working as a temp, before he was hired on as a full time employee and he has been there ever since. Up until today he has come home with bruises and minor scrapes, but no real injuries. Today however, he had cut open his thigh and needed to have stitches. Once he was treated and discharged from the hospital he just went back to work as if nothing had happened.

All of this information was given to me with in a minute. It was hard for me to process. I didn't know what to do or what to say. I had gone through a short list of emotions which Justin had the "pleasure" of experiencing. Eventually, I was able to take a breath and experience for myself the real feeling behind my fears. I was relieved now, that realistically, he was okay and I was grateful that nothing more had happened.

When Justin pulled into our drive way I went outside to greet him. Tears still in my eyes, I hugged him and said a silent prayer of thanks. Its moments like this one, that stops you in your tracks and makes you realize what you have and how quickly those very things can be lost.

With everything that happens in our busy lives we often forget to be grateful for the gifts that God has given to us. We often want more of something, or like me, we want to make a difference in someone else's life, so much so,  that we neglect what it is that we do have. Today, was a reminder to keep my eyes and my heart focused on my family. By being a good wife and mother,  I am in all actuality doing what I seek to do. I am making a difference in someone else's lives, theirs.

While, I am not overly thrilled that it took Justin being injured to snap me back into my place, I am grateful for the lessons that I have learned today.

What If...?

Do you ever ask yourself "what if"?

What if I I left ten minutes earlier..

What if I hadn't raised my voice...

What if.., I were wrong..?

Justin and I have been going back and forth with all kinds of "what if's" this past week and a half, more so over this past weekend. In my experience the what if game has never been enjoyable. It usually holds some amount of regret and blame. This time it holds those same feelings and more.

On Friday and Saturday night Vada kept me up pretty much all night. There were moments where she would settle into sleep and I would too. For any parent who has had a late night with your little one then you know how those moments of rest (while possibly being hours), sometimes feel only like minutes.

Out of denial and my own tiredness I didn't keep a log of the times Vada kept waking up, or how long her seizures had lasted. Instead, I laid next to her in an almost delirious and worn fashion and in my horror I watched her new movements and I listened to her new sounds. All along praying silently that they would just go away.

I woke Justin up several times telling him to watch what she was doing. Or to listen to her. Her movements were ones that made her look as if she were very uncomfortable and cranky.

Vada sleeps primarily with us. Primarily with me on "my" side of the bed. She likes to lay on her side and bury her face into me or she likes to lay on her back "snow angel" form and take up the bed. I have really been self disciplined about putting her into her pack and play before bringing her to our bed lately. Typically she sleeps in it for at least two hours before waking up and joining us. Friday and Saturday were no different as far as that routine goes.

Friday night while only two days ago is hard for me to remember in great details. So much has happened since then that I cant focus on certain moments of that night. I remember that Vada woke up around 1 a.m. and that I was laying on my side with her and she was nursing. I remember that she pulled off suddenly and seemed to be uncomfortable and then after a moment she would latch back on. She did this several times. Each time the arm that was left exposed would go from holding me to flat on the bed behind her. After several times of doing this she then began moaning and rolling her head from side to side. I woke Justin up to take a look a couple of times. I also remember throughout the night being incredibly uncomfortable. I was laying straight, (soldier like) while Vada took up half of the side of the bed. I was trying not to touch her because I was afraid that for some reason I was making her uncomfortable. I had tried to put her back into the pack and play, but that didn't work. So I gave her the space she seemed to need and with every sound and movement I laid awake and watched.

Saturday holds pretty much the same story. Only Saturday seemed to be more intense. I don't know if the lack of sleep on my part that made it seem that way or if it truly was getting worse. Justin said it was worse than the night before but this too was his second night of me waking him up several times in a row. Which I might add doesn't typically ever happen. Usually, I leave him be at night. These past two nights were different, I needed his eyes, his opinion and I think..., I needed his ability to always see the good in things. I think for me denial was setting in and knew his positiveness would either make or break me in this situation.

He would watch with intensiveness as I repeated the same questions over and over again..., "What do you think? That's not right.., right? Do you think its a seizure?" The answers were always the same however, no matter how I tried to reword the questions.

Saturday led to Sunday and that night in itself seemed to last forever. I called the Neurologists office around 3 .m. but it turns out that the crude female doctor that I refuse to let treat Vada was the one on call.

I have Vada's primary Neurologists cell phone number, but I didn't want to call at that time because reality was already sitting in. If what we were seeing was a relapse of seizures, there was nothing he could do at that time, so why call and wake him and possibly upset him. I decided to go lay back down with Vada and wait until morning.

At 9 a.m. I called Vada's neurologist on his cell. I am so glad that he is her doctor. I can understand him, he is pleasant, seems to really care and he listens to me. Having him treating Vada is a reassurance. I told him how Friday and Saturday had gone. How the nights never seemed to let up for her, how she didn't seem to get a break from her "seizures". How her movements seemed different than the seizures she was having before, but that I was still concerned that she was having seizures. I told him how I really didn't notice anything throughout the day even though she was sleeping a lot during them and that it seemed to only be an issue in the evening. Which I might add, is odd.

He asked a few questions and then instructed me to give her a shot of ACTH. He said that we needed to stop the seizures now. Luckily we had almost a full vial left. At $29,000.00 a vial I couldn't bring myself to throw it away when Vada was finished with her treatment, so I just left it in the refrigerator. Good thing too.

He then said that on Monday he would begin the process of ordering the next form of action. A drug called vigabatin, known as Sabril in the U.S. Its the only other drug besides the ACTH known to be able to stop the form of Epilepsy that Vada has.

Having expressed my concerns and a plan of action already in the mix I felt a wave of relief and didn't second guess the ACTH injection, or the next step that we planned on taking with the Sabril. I thanked the doctor and hung up the phone.

During Vada's ACTH treatment I was constantly on the look out for seizures. I was aware that the ACTH may not stop them and I was determined to catch them if that happened. Looking back now, there were times where I had questioned movements that she made but brushed them off as if it were simply movements on her part. Now, I cant help but wonder if I did in fact witness a weakened form of a seizure. Even with the knowledge that she could relapse, I never wanted to admit that it was actually possible for her to go through it. Admitting that something out of your control is happening is a hard thing to do.

With one weight lifted and another set in place I went to the refrigerator and took out the ACTH and begun a ritual I was all to familiar with. I described to Justin what Dr. J had said and what we were to do. I think at that point we were numb and that to a certain degree we were also in shock.
----------------------------------------------------------------------------------

Today was the first opportunity that Justin and I have had in a very long time where we both could go to church together. Lately we have gone every other week, when he is off from working. He would go to the first service while I stayed home with Vada and then we would switch "shifts" and I would go to the second service alone. Our original plan was to have Justin's mom come stay with Vada so we could go together. I was torn in this decision because I didn't ant to leave Vada, especially not if she were relapsing but I also wanted to go to church, with my husband.

Justin and I decided that the hour and a half that we would be gone wouldn't change the situation one bit. We needed this time together and to be with God. So we went to church.

It was hard seeing all of the faces of our friends, people who we have come to consider our extended family. Everyone of them has been so loving and supporting. Looking into their eyes when they asked about Vada, the little girl they barely knew but loved and telling them that we didn't think she was doing too well, was so hard. No one knows quite what to say, yet they all want to say so much. We love them and are grateful for them.

After the sermon the elders came to Justin and I and prayed over us. They prayed for us, for Vada and for our family in whole.

After leaving church the doubt began to settle in. I began questioning myself, what we saw the nights before and the things that we were telling people. What if we were wrong?!?

I couldn't let it go. I began asking Justin all kinds of questions. What had he actually seen those two nights. Did he really believe that we were seeing seizures again? With every one of his answers, I would disagree. Was this denial on my part? Its ironic that I would ask him these questions. When Vada first started having seizure, it was me that had to convince him that what we were seeing at the time was in fact seizures.

Justin said that he remembers with no doubt that Vada was having the "jack knifing" motions on Saturday. I remember her arm movements. Not her legs, not at all..., not even once. Was I too tired tired to notice what was really going on? The question is not who is right, but what is right because now, I am full of doubt and uncertainties.

The drug Sabril, our next option, if Vada has relapsed has a side effect that I am only willing to risk if I am certain that the seizures are back. Even if it is denial on my part (which is not my typical behavior) I need to be certain.

I plan on making some calls tomorrow. When Vada was on the Topamax she slept all of the time and barely nursed. She doesn't take a sippy or a bottle and I did attempt to give her both several different times, but I think she may have been dehydrated. I also think because of the lack of fluids she became constipated. Which could explain a lot. I gave her glycerin chips to help soften up and harden stool and she went a small amount, but you can tell that it was firm and that there is more in her that needs to come out.

I checked again in her mouth and I noticed a teeny-tiny white dot. When I rubbed over it the dot remained and the gum area is swollen, so I think its safe to say that she is teething. I know typically with teething that there is diarrhea, but if you don't have enough fluid, you don't get diarrhea. So I think both are a possibility.

I am hoping that Justin and I were too tired. I'm hoping that we over reacted and that what we are seeing is a number of things combined and not a relapse of Vada's seizures. I know it is a stretch, and I feel awful for worrying people over something that could be so basic as constipation and teething, but I hope that's what we did. I just cant acknowledge the seizure aspect of things yet. IF I see something that looks like the "head bobs" or the "jack knifing" that comes with the IS then I will acknowledge them, don't get me wrong. For now though, I have a plan on trying to rule out everything else before I sign a consent form to give Vada the Sabril. I think that it would be irresponsible if I didn't rule out everything else first.