Tuesday, November 30, 2010

Our Family Tree

Each year one of my favorite things to do around Christmas is making our Christmas cards. I love taking the pictures and designing our cards (even if I am designing it through the Wal-Greens website). I even like addressing the envelopes and putting on the stamps. I know its crazy but everything focused on or pertaining to Christmas lifts my spirits and puts a smile on my face,besides the crazy shoppers.

This year for my birthday I received a gift card for a family session with a local photographer. I planned on using our family picture from that session for this years Christmas cards. However, there is not one single day between now and Christmas that we can all get together to do the session. Plus with Vada's immune system being so vulnerable I am a bit nervous at exposing her to more people. So the family picture will have to wait until after Christmas.

I did consider doing the photography for our card myself. It is what I have done for all of our past cards and announcements, but I decided against it this year.

Justin's mom recently gave a book from my amazon wish list that was filled with idea's for Christmas crafts. In it I found my inspiration for our 2010 Christmas cards!

It required a little green paint. Lots of messy hands and a whole lot of giggles!

Monday, November 29, 2010


Every time I hear or read the word "Tradition" I think of Fiddler on the Roof. A musical that I watched for the first time with in the last couple of years with Justin and his parents. I never realized that I enjoyed musicals. However, some of my favorite movies are in fact musicals. Fiddler on the Roof wouldn't be one of my favorites, but I did enjoy it.

Each year Justin, the girls and I get a new ornament on Thanksgiving for our Christmas tree. We give them to each other on Thanksgiving night (or the night we may celebrate Thanksgiving). This year we had to wait to hand them out because we were waiting for Vada's and Justin's to come in the mail. Even though Justin didn't mind not getting his at the same time and Vada wouldn't know the difference one way or the other I wanted to hold off and wait until we were all able to get the ornaments at the same time.

By waiting until all the ornaments were here I felt that it made a small statement to the girls that together we are family. With Jasmine and Kiliegh going back and forth between their dad's I feel that "family" becomes confusing. I want them to realize that doing things together as a family is important. So here when we do family oriented things we wait until we are all together. Even if that means that we do it later than we had planned. The girls have separate visitation schedules and with Justin's work schedule sometimes "later" becomes "much later". However, that was not the case this time. Thanksgiving was on Thursday and we received the two ornaments on Friday and then we exchanged them today. Not a long wait at all.

Vada's ornament is "typical". It's her first Christmas, so we got her a porcelain rattle that says "Baby's First Christmas" on it.

Kiliegh's ornament is of a little "hip hop" dancing girl. This year we have finally found an activity that Kiliegh enjoys and that holds her attention. Dancing. I am not a parent that believes a child needs an extra curricular activity but at the same time I don't discourage them. Up until dance, for Kiliegh, she wanted to try out everything but liked nothing. When she came home asking to be in dance I was a bit skeptical. We have signed her up for so many different activities but she has wanted to quit them before barely starting them. Luckily, those activities were always seasonal things like soccer and T-Ball. Dance was a bit different. Dance was consistent. Never the less she has been doing dance all year. Her excitement has not diminished but grown and we have watched her self confidence grow with her experience. I was excited when I found her ornament, it fit her well.

Jasmine's ornament also fit her and her new love for a new activity. Karate. Karate was such a great choice for Jasmine. After Kiliegh began dance Jasmine wanted to go too. That choice was something that we did discouraged. The competition between Jasmine and Kiliegh is an issue and probably more so than typical siblings who live with both parents. Plus, since dance was the first thing that Kiliegh has enjoyed doing we really wanted it to be "her thing". So we suggested a few options to Jasmine. Some of her friends are in gymnastics, which is something that she has also stated that she would like to do again and she has in the past so we knew that it would be something that she would enjoy. We also suggested Taekwando which is something one of her best friends does. Then we brought up Karate. There is a place about two blocks up from us that we said she could ride her bike to and that would be all of her own (something her sister isn't doing and a place that her friends aren't going to). She chose Karate. Were glad that she did. She has been doing it for four months and is already getting promoted to her third belt, the orange belt. Her confidence has also is improved and we've noticed that the values being taught in martial arts are values that we as parents are trying to teach as well. It's a great activity all around!

Originally I really wanted to get a wind mill ornament for Justin. He designed and built his very own throughout the end of last year and the beginning of this year. He was so proud of it and it truly was amazing. It looked like something you would have to special order and spend thousands of dollar on. Plus, it really generated power. So, when I went searching and only found printed picture medallions with wind mills on them, I was very disappointed. I thought for sure as popular as the "going green" and the wind farms are becoming I would have easily found what I was looking for. However, I did finally settle on something else that went well with Justin's 2010 achievements. Justin has been a father for over five years now, but this year he has had his first baby. Justin's ornament is of a father figure holding a "new" and naked baby.It wasn't my first choice but I do think it was a good one.

While I was searching for Justin's ornament online Vada's nurse came over for one of her normal visits. When I explained what I was doing she suggested that I get myself a syringe to signify all of the injections that I gave to Vada. Justin and I both agreed that it was a good idea. However, that too was not something easily found. So what we got was a figurine that looks like a nurse. For the personalization we had "Momologist" printed on. Momologist is a trademark of one of my friends, Amy. I got the idea from her blog Momologist.com (formally Larkin's Place). Amy explained to me once that while she didn't put in years at medical school to become a Neurologist or a surgeon she has put in years of being a mom. Her specialty like mine is Momology. I think its clever and I am proud to be a Momologist.

So there it is. One of our family traditions and the story behind this years Christmas tree ornaments.

Friday, November 26, 2010

Giving Thanks

Our Thanksgiving consisted of Jasmine, Kiliegh, Vada, Justin and me (or is that I?). It consisted of the girls running in and out of the house. Their voices on full blast but their laughs making up for the loudness. It consisted of Vada rolling around all over the floors while paying attention to all of the finer details of the "stuff" left behind from a quick vacuuming job. It consisted of Justin going back and forth from playing his Call of Duty game to basting the turkey.

Every holiday, including Thanksgiving is pretty much the same for us. For holidays with Jasmine and Kiliegh and visitations with their dads we swap yearly. This year we have the girls for every holiday. Last year and next year we wont. On the holidays that we don't have the girls we switch our holiday plans to a day when we all are together. Needless to say, our holiday traditions remain the same, regardless of when we celebrate them.

On Thanksgiving we tend to cook way too much food, decorate our Christmas tree and begin watching Christmas movies. Thanksgiving for us is a day that we give thanks to God for all of his many blessings, but it is also a day that we celebrate the coming of Christmas.... and then there was me. I had spent the day before preparing all of our side dishes. All I would have to do today was to bake them. So, I spent my day soaking up one of the greatest gifts that God has ever given to me. A gift that I proudly call my family.

This year we had Turkey, corn casserole, green bean casserole, stuffing (Stove Top and not cooked in the turkey), mashed potatoes with gravy, fresh veggies and dip, cheese and crackers and bread. We also had pumpkin pie with cool whip, apple pie with vanilla ice cream and brownies. For our movie, we watched A Christmas Carol, the newer one with Jim Carey and we did decorate our tree, but I was too tired to put my ornaments on at the same time as Justin and the girls.

I am blessed beyond any form of measurements. I know if you stand on the outside and try to look in on my life you may not see things the way that I do, but trust me when I say, I am rich. I have a life that I would not trade with anyone else. I have three beautiful daughters who at times may drives me to insanity, but the good times always out weighs the hard times. I have a husband who through it all is still my best friend. Who works hard so that I can stay home with our children and who loves me unconditionally. I have in-laws that are amazing and a church family that I would do anything for and who have done everything for me, and my family. I am blessed and through everything that has happened this year I am grateful for today.

Wednesday, November 24, 2010

Holiday Crafts and Projects

For today's craft we painted the insides of Christmas tree bulbs. It was an idea I got from the Christmas edition of the Family Fun book. My mother (in-law) gave it to me as a gift recently.

I bought the clear glass bulbs at Target for about $7.00. Later I found them for $5.00 at Ben Franklin, (who would have guessed, usually they are more expensive than other stores).

We chose a couple of colors of paint and squirted them into the sides of the bulbs, making sure that they ran down the insides of the bulb verses making a puddle at the bottom. After a decent amount of paint was placed in the bulbs I added a tiny (very tiny) amount of water, covered the opening and gave it a good long shake.

You can shake the bulb in one way, making the paint go only in that direction or you can shake all over creating a wonderful mess! We did both.

The final result ended up being very impressive!

Yesterday, our time was a little limited because Jasmine, Kiliegh and I took a trip to Target for some last minute shopping. So, I chose something quick to do. Not really a craft as much as a little holiday project.

Oranges with Cloves. Smells great and makes a really nice centerpiece (if arranged correctly, usually in larger groups than what I used). I just grouped our little arrangement into three's, a good number to decorate with in my opinion. We have a small table so I thought three was enough, plus I had a great spot to put them!

I am a little nervous with the exposed fruit. Every time I make banana bread I have to leave the bananas out for a couple of extra days and our house seems to fill up with fruit flies. (Even if I put the bananas in the refrigerator). So, I am crossing my fingers that the mixture of the acid from the oranges and the smell of the cloves will be a repellent and not an invite for these nasty annoyances!

Things over all have been pretty good in the Wilson house. The girls have been playing and (for the most part) enjoying each other.
I haven't noticed anything that looks like a seizure with Vada...

...and she is really seeming to be more awake and alert. More alive!

Over all, I am feeling pretty good too. Things are good and I am praying that they continue to stay this way!

Monday, November 22, 2010

A Gobbiling Good Time

With all of the chaos that has been going on over the past year and a half our house has not been "normal" in a very log time.

Crafts, baking, board games and fun little projects was something of a family routine for us. We don't have a permanent vinyl table cloth for nothing! It's there for a reason!

I have made a vowel to myself to make more time. Like I have any! But I have promised myself to set aside some of the less important things and make time again for what once made our family connected and happy.

In the spirit of Thanksgiving I decided to have the girls help with our table decor. Tonight's project was turkey napkin holders. Tomorrow the evening is a little more free so I am still deciding on what we will do. Whatever it may be, I know that it'll be fun! Tonight's craft certainly was!

Sunday, November 21, 2010

One Delicious Sandwich

It's on a rare occasion that I run across something I really want to mention or suggest to others, but I ran across a delicious find and I want everyone to have the opportunity to try it out!

When Vada was last in the hospital I was hungry for something "off menu". During her eight day seizure evaluation I ate a veggie burger for lunch and dinner everyday. In case your not up for doing a math lesson today, that is sixteen veggie burgers. They were good and I am not complaining, but I got pretty worn out on them.

On a quick side note OSF Children's Hospital treats the parents of their patients very well. They will provide one parent with breakfast, lunch and dinner for free everyday that your child is in the hospital. The menu that they provide is impressive too! You can choose from all kinds of meals like pot roast and grilled talapia, or my favorite, the veggie burger. The problem for me is that I am probably too picky and meat products just happen to be out of the equation for most situations, especially at restaurants.

Anyway, during this last stay at OSF I was introduced to a Swiss & Tomato Bagel Sandwich from The Spotted Cow. Simple and delicious! With the first bite I was addicted. I had found my new favorite sandwich!

Yesterday, after church, Justin and I went to Hy-Vee and I picked up the ingredients.

It's a really simple recipe...

Bagels (of your choice- TSC put theirs on white, I like Health Crunch)
Sliced Swiss Cheese (4-slices per whole bagel)
Fresh Tomato
(Lite EVOO)

Preheat the oven to 350 degrees. Lightly cover the inside portion of the bagel with EVOO. Put the bagels into the oven "belly up" until warmed, approximately five minutes. Add two slices of cheese to each 1/2 bagel, then warm until the cheese is almost fully melted. Once cheese is almost melted add a tomato slice and bake until tomato is warmed... then ENJOY!

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.

Thursday, November 18, 2010

Not a Member of the Entitlement Group

Above and beyond the difficulties we are experiencing with Vada's health we are also at our wits end with parenting. I have been learning over the past 11 years why it is that God wants us to "wait" until we are married and then why we are suppose to stay married. One of those reason I believe has to do with parenting. I don't think that God intended for parenting to be done alone, at least not for me. :) It's too hard. Going back and forth between parents is not only hard on the child, it is hard on the parents as well. It wasn't until I was pregnant with Vada and the realization of our situation actually set in.

Justin and I had done things the "right" way. We were married and soon to be having a child together. There would be no visitations. No one else would be raising our child but him and I, together. It was a wonderful feeling.

Once that realization set in so did another.

"Sharing" Jasmine and Kiliegh has been a painful process. I had been doing visitations for close to nine years when I became pregnant with Vada and up until this point in my life it was just something I had to do. I had never attached one specific feeling to it, at least not that I was aware of. Every time they would leave it broke my heart. That too was something I never fully grasped until I realized that Vada would never be leaving (well, not until she was older).

I came from a "broken" family so I remember my visitations well. Before my mom became ill I liked living with her and I enjoyed visiting my dad and grandmother when it was their time with me. Psychologically..., who knows?? As a mother now, I cant help but wonder if it was harder on my mom then, than it was on me.

Jasmine and Kiliegh have different biological father's. So in return that means that they are experiencing at the very least three different parenting styles. Kiliegh experiences her dads and brings some of that home, as does Jasmine and then together they experiences ours. Its confusing for Justin and I so I am sure it has to be confusing for them as well.

"Consistency is the key." Or so we have been told and we truly do agree with that..., its just so hard! We try. We really, really try..., but what works for one family may not work for another. Especially, a triple blended family.

Someone suggested that Justin and I both read Have a New Kid By Friday. I read this book somewhere around two years ago. It was a good read with a lot of different insights on parenting. The way I remember it was something like "change yourself, you'll change your child." Makes sense, I suppose.

Since then I have read a lot of different books on parenting. My favorites being the Love and Logic series. I have a six disk CD player in my car and each slot has a different Love and Logic CD in it. Its what I listen to on my trips to and from Peoria. Even with the books that I have read, I still feel lost on a lot of different issues. That's why when "Friday" was suggested, I decided to give it a try again.

I find it ironic that I post a online "tantrum" of my own, called it "Entitlement" and then with in the first few pages of "Friday" it refers to our children being part of the "Entitlement Group".It says that "They expect anything and everything good to come their way. In their eyes, the world owes them." I read that and immediately out loud I said "great". Luckily, I was in bed and no one heard me, so I didn't need to explain my sudden out burst, but I realized once again that this book would make me look at myself in a whole new way.

I don't think that the world owes me anything. Although I may portray it in ways..., I suppose, like possibly in my last post. If I write that way, even when I am just venting, I am sure that I must behave that way at least some times. Surely the girls pick up on that.

Well, tomorrow is Friday (the day of the week) and I am just starting Monday (the chapter) tonight. I will probably get in three pages before my eyes cross and the book slaps down onto my face, waking me momentarily so I can place it on the shelf for the night. I am going to give myself a realistic goal on this little project. Before Vada I could have sat down and finished this book in three or four hours - tops. Now, since I have had her I have read a total of two and a half books. Typically, when my head hits my pillow, I am racing to fall asleep. So, for this book, because I plan on sticking to it and reading some everyday..., I am going to give myself until next Friday to "have a new kid".

Wednesday, November 17, 2010


I'd like to have a break down now.

No, I don't want to break it down..., I meant what i wrote. I think that I am entitled to a emotional break down.

Maybe not, but I would still like to have one none the less.

Id like to fall onto my knees and scream. Maybe smack the ground a few times, pull my hair and throw out some obscene words just to really make my point.

I don't want my mental status to go un-noticed so I would like to be in a public setting somewhere. That way I can feed off of the looks from the random people who are stopping to notice the "crazy girl" freaking out.

Today I would like to ask God why he wants me on my toes constantly. Why every time I really start to see the light he likes to throw something new into the mix. Id like to cry about my childhood and ask why that wasn't enough for him and why he can't just pick on someone his own size. I like to ask when he plans on letting up on Vada and even when he plans on giving Jasmine's bio a swift kick in the ass so he'll quit letting her down so much, that way maybe our home could have a little peace.

I don't want to ask these things. I want to scream them. I want to stand in front of his face and scream at the top of my lungs with every once of strength that I have left in my body and then I would like him to hold me (because right now, I am feeling that small) and for him to tell that everything is going to be alright. That he'll fix it all and make it better. I need to hear that I will be able to watch Vada grow up and that he has no plans of taking my baby girl anytime soon. I wish that there was something that I could do to be able to hear those words.

IS IT TOO MUCH TO ASK!?! God, are you listening?


I wrote that on Sunday. When my body was so tense with anxiety. When I woke up next to Vada for the second day in a row, having breathing difficulties and a fever for the first time in her little life.

I felt miserable. Tired and Worn.

I felt like It was just one thing after another.

I felt like I wasn't being listened to.

I had told the doctors the last time Vada was hospitalized that I felt that the cause of her heart racing and her fast breathing was due to the Topamax, but no one listened to me. It started as soon as she started taking it, so it made sense to me.

Over all, I felt like I wasn't watching Vada live, I was watching her die.

Sunday, about an hour or two after talking with the on-call Neurologist Justin came home. I had asked him just to sit with me on the couch. I was feeling overwhelmed from the call and overall depressed. Vada was almost asleep. I cant remember now if I laid her on my legs or if I laid her on the floor, but we saw a twitch and then after a few moments we saw more twitches. They were very deceiving. Could they be her having another seizure??? Yes, I think that that is what I was seeing...

11 weeks, that's how long Vada was on ACTH. That is 77 injections that I gave (Not including the other medications I had to inject) and in return we (yes, we. She suffers through them we suffer watching her suffer...) only received Two Days. Two days off of the ACTH and we were greeted with what I thought was my baby girl having another seizure.

For a person who has depression, it is hard to constantly keep your head up. Its hard to look at the brighter side s of things. I'm reading a book called "Telling Yourself the Truth", if only it could be that easy. Over all I have been doing a pretty good job at keeping my head up and my thoughts positive, but this last hospital stay really broke me. Not because of anything in particular, it was just another weight on my already tired back.

Over the past couple of days I have been able to open up to my husband about my fears and about my anger towards God. It has helped to have him by my side. Supporting me, loving me and not judging me. He is one of the only people in my life who really knows me and he is also one of the only people who I am not afraid that he'll leave me because I am not perfect.

Yesterday I took Vada back to Peoria and I talked to her treating Neurologist (he wasn't on call when she was in the hospital) and even though the other neurologist didn't acknowledge me, Dr. Jennings did. In fact he broke the Topamax down for me and it turns out that there is a small side effect that makes breathing difficult. It also makes concentration hard, which could be why she is now suddenly having a difficult time latching on when nursing.

I can not express the feeling of relief that I had when Dr. Jennings said "Okay, lets get her off of the Topamax". Just punching in those letters on the key board makes me tear up.

I know my baby, I always have and when I feel like I am not being listened to on things that are this important, I guess I get scared inside and something kind of snaps.

It took a lot of work on my part, but I did it. I was heard and as crazy as it may seem, I now feel relieved and like things may actually be okay now.

I do not think that I am right all of the time. I don't think that I am above any of her doctors. I just know that I know my little girl. I believe that her heart being larger and sitting on her lungs has something to do with her breathing. That makes sense. But, I also think its an overwhelming coincidence that this all became an issue the moment she started taking the Topamax and I couldn't rest until she was off of it and on something else.

So she is back on Keppra. She started it last night and by Friday she will be on the full dosage of that and fully off of the Topamax. Ill be the first one to tel you if her breathing and heart continues at the rate its been going. If I was wrong, then so be it. At least now I can rest a bit easier knowing that I followed my instinct.

As far as the "seizure". It could have been. Vada's nurse seems to think it probably was one and I kind of do too. Dr. Jennings, however, doesn't seem to be overly concerned. He said because of how I am describing it he doesn't believe that I was seeing a seizure. He called it something, but I don't remember the actual term. We all do it, its something that happens a lot when were almost asleep and our body starts to fall into REM sleep. Babies do it too, the relaxing part.(I'm not for sure about the REM part.) We, however may see it more in Vada than in a typical baby who does not have seizures because she does have neurological issues. I trust Jennings, I trust that it was just what he said. I think partly because I am in a bit of a denial myself on it. I'll watch her just the same and if we do see more, then we will go from there.

Even though I have been angry with God I haven't not tossed him aside. I will not walk away from him. He has brought me to my knees more in the past two years than I ever have been in my entire life but I feel as if he is always giving me the tools that I need. Everything that is happening or that has happened always shows its purpose, in time.

I still have some more overwhelming issues to deal with over the next few days. Some very huge and difficult decisions to make for myself and for in return for Vada as well. Those decisions will ultimately effect our whole family. I'm not ready to share those yet, but I would love prayer. I need prayer.

So there. I had my breakdown. I threw a whole bunch of words out into cyber space and at the same time I fulfilled this need to scream.

I am not perfect. This has been a very hard time and I truly believe that I am entitled to "freak" out every now and again. I feel guilty for having these feelings, especially when I know what I do have and what others have lost. Out of everything that I have just wrote I hope that it is never misunderstood that I am grateful. even though this path has been a bumpy one, I wouldn't change it. I have everything I have ever wanted. Sometimes, I just get it in ways I wouldn't have expected.

Wednesday, November 10, 2010

Not as Bad as it Could Be

Vada and I have been home for about two hours now. The discharge literally took hours today, but were home now and that's what counts!

Dr. Shaw, one of the cardiologist came in around 10 a.m. and discussed what he saw in Vada's Echo and EKG. At that time he hadn't looked at her chest Xrays so everything he had said at that point kind of just sat in limbo until he came back..., around five. When he came back he brought Dr. Bramlett, another cardiologist from their group. Dr. Bramlett has been following us since my pregnancy. He was the first and only cardiologist that I saw when I was pregnant. Since then we have met all of the cardiologist, but I still like Bramlett the best. I'm familiar with him and he is familiar with Vada's heart and that comforts me.

Dr. Shaw and Dr. Bramlett stood outside of Vada's room for forty to forty-five minutes before coming in. It took them quite a long time to actually enter Vada's room and really tested my patience, but I finally received news that made sense and left me feeling semi confident in bringing Vada home again.

Vada is having difficulty breathing because her heart is enlarged. It is being called Hypertrophic Cardiomyopathy (HCM). Right now I am understanding that the HCM in Vada's case is being considered a "symptom" or a "side effect" and not a "disease". Basically what it means is that the walls of Vada's heart are too thick. There has been a plaque like build up on them. Most likely a side effect from the ACTH. The build up has made her heart not only larger but heavier. Her lungs have become a cushion that her heart is weighing down on and in return is causing the breathing difficulties. With the HCM setting in surgical repair becomes a difficulty. Actually, the surgery would be fine. The recovery most likely would not be. With HCM the heart has a hard time "relaxing" and that is needed for a repair to fully take place. Vada would most likely struggle very hard to recover. This is something that we have all agreed is not a risk that we are willing to take at this moment because above and beyond all of this we are still dealing with the fact that Vada is Immunodeficient and possibly has Adrenal insufficiency. Meaning fighting off infections would be another difficult process on her little body.

Two weeks ago we were told that Vada is having Congestive heart failure. Today we are being told that this is not fully the case. Today we are being told that over all her heart is about the same as it has been all along, other than the HCM. She will still need to have surgical repair, just not right away. After discussing the HCM we then went to the Tachycardia (rapid heart beat).

Vada has ASD and VSD as well as an aortic stenosis. We have known about the stenosis we just refer to it as the "narrowing" of one of her valves..., because it' easier to understand and say. The stenosis is actually benefiting Vada because it is helping prevent blood flow into her lungs. However, we do know that she does have some fluid retention on her left side. The doctors believe that Its everything combined causing her her heart to over work. You have probably seen shows about people getting addicted to steroids and that there is withdraw when coming off of them. The case is the same with Vada coming off of the ACTH. Some children just struggle harder. If you add her withdraw to the un repaired ASD, VSD, stenosis, Cushings, and the HCM then you have one strong little baby going through a whole hell of a lot!

What does this mean over all? It means that we wait. Tomorrow is the last day of ACTH and Keppra. If the HCM is caused from the prolonged usage of the ACTH then we should see a decrease in the "thickness" of her heart over time. As her heart size (the walls) and her body weight goes down her heart should not be so over worked and the tachycardia should decrease as well.

Vada goes back to the Cardiologist in a month. She will have another ECHO done then to see if we notice any progress. Hopefully we do. However, it may take a couple of months for things to go back to "normal". Both Dr. Bramlett and Dr. Shaw agree that we wont need to do surgery for at a couple of months, which puts us into early to late Spring. Maybe even back into the summer.

We were told that there will probably be more moments where Vada will have labored breathing or rapid heart beats and we will have to pay attention to the consistency and extremeness of each episode but over all Vada should be just fine.

Tuesday, November 9, 2010

Pro's at the Waiting Game

We have known that Vada has heart disease long before we even met her. Its was something that I came to terms with and had accepted very easily. What else could I do.

We were told before Vada was born different time frames in her life when to expect to have her heart repaired. The latest was next summer.

Next summer has come prematurely. Next summer is here. Or so we've been told.

We have been in and out of hospitals four times in the last month (counting our two trips to the ER in our home town). Each time for the same issues and each time we have been sent on home with her on a new medication, or a new dosage of an already existing prescription.

This latest trip to Peoria was a bit different than the ones before.

I called the Neurologist and then the cardiologist and I told them that Vada was struggling and that I was bringing her in. I asked that they call our ER to give them a heads up. Our ER doesn't treat Vada. They send her to Peoria. I figured if they got a call form a doctor from Peoria maybe the transition would be quicker.

After talking with the specialists I called Justin's mom and asked her to come over and sit with Vada while I packed us a bag and then take Jasmine to her house for the night.

I called Justin at work and explained what I was doing and why..., and he said that he was on his way home, he was driving us.

We had decided to cut out the middle man. It was a hard decision to make but either way there were risks involved.

We got to OSF safely and she was brought straight to a room, where after assessing her she was given oxygen. Other than our last stay and then when coming out of surgical procedures Vada has never needed assistance with her air intake and the only reason she was giving air the last time she was hospitalized was due to her being so upset.

(A quick side note for you parents who are in similar situations with heart issues... You do NOT give someone who has an unrepaired heart defect full air. I didn't know this until today. By giving full oxygen it opens up the lungs. With an unrepaired heart; opening up the lungs can lead to the lungs being "flooded" with fluid.)

After being brought up to the PICU from the ER we were given the much needed time our bodies were screaming for to rest a bit. Justin took the couch and Vada and I slept in the crib together.

Before this specific trip to the hospital we had an appointment with the Neurologist and the Cardiologist for this up coming Friday (the 12th; Justin's 30th Birthday) . Vada was due to have her ECHO then. However, since we are here now, they decided to go ahead and do it early. This is Vada's third ECHO since has been born and her sixth or seventh overall.

After Vada was born she had a ECHO done almost immediately. I was still recovering from the cesarean and had not had the opportunity to meet Vada let alone be there for the procedure. The second ECHO was done was a few months ago and I was so busy keeping Vada preoccupied that in return I was preoccupied as well. Today, I was able to really pay attention. The beating of her heart was beautiful. Watching the bird like flutters was like a piece of moving art. It was incredibly deceiving to watch. How could something so beautiful not only be so powerful, but also have something wrong with it?

Vada's heart issues has always held me in a cold place of fear. I look forward to hearing her heart beating with out the "machine gun" murmur. I look forward to not being so scared of all of the possibilities her heart defect brings but being able to eagerly anticipate the capabilities her heart has to offer. (does that make sense?)

Vada also had a chest Xray done. This was done to see if there was any fluid in her lungs as well as to see the size of her heart. Typically we go into a cold room that is separated from the part of the hospital that we are staying in and then Vada is placed in this upward seat that has these plastic wing like pieces that wrap around her whole body forcing her arms to be straight into the air. I'm sure its frightening for her to have to endure.

Today a lady came into our room hauling a huge red fire engine cart. It looked just like an actual truck. With a ladder and a real working bell the engine pulled up next to Vada's bed and just like that she was getting her chest Xray. The nurse laid the film under Vada then covered me up with a protective vest (I was laying in the crib with Vada at the time.) and just as quick as she entered she was gone.

The doctors covered all of their basis today when it came to doing tests on Vada's heart. Vada's last test was an EKG. It too was a simple test compared to past situations and Vada paid more attention to pulling on the cords that were attached to her than she did the person putting them on.

While I am grateful at how great the staff are here and how thorough the doctors are, I am a bit disappointed to say that I know nothing new except that there is some fluid in Vada's left lung. Anything above and beyond that is all one big assumption on my part.

The cardiologist that is on call this week didn't make it in to see Vada today. He made it into the room right down the hall from us however, but I have been informed that they had something going on until eight and that may have been the reason for his absence. Its hard for me to read into that. On one side it could mean that he is not overly concerned, which is a good thing. On another side, two weeks ago they discharged Vada after one night of observation so why are they keeping us for another night if there isn't something concerning them?

The nurse seems to think that we will "probably" be going home tomorrow and that we will be one of the cardiologists first stops. She also told me that the cardiologist usually make their rounds at 6:30 a.m. and that we should be seen by no later than 8:30 a.m. Hopefully what she says is correct and we have the answers we have been waiting for.

Well, it feels incredibly late right now, even though its only 9:30 p.m. I know many are wondering whats going on so instead of holding off on posting this I am going to go ahead and read through my mess of words tomorrow, and fix what doesn't make sense then. So please excuse any and all grammatical errors, I am sure that there are plenty of them..., there usually is.

Tonight I am grateful for an amazing God who created and then brought us Vada. I am grateful for the doctors and nurses who are helping take care of her and I am grateful for my family and friends who are saying prayers and lifting her up in her time of need. God is Good. He is faithful and he is here holding Vada in his arms, protecting her and giving her the strength that she needs. God has a plan for Vada and I believe that in his plan she will be with us for a very long time.

Sunday, November 7, 2010

Laid Back

This weekend was so enjoyable! The weather was decent, it was Justin's weekend off and Kiliegh was home. The only thing that was missing (besides two sisters bickering) was Jasmine, and we would have accepted the bickering if it meant having Jazzy here too.

Because the weather was so nice and we decided to go for a long walk and then to our neighborhood park.

Cody (our dog) was able to run off of his leash for awhile and play catch. Which I am sure he appreciated at the moment, but because of his bad hips maybe not so much later on!

After we came home Justin did some electrical work so I could have a t.v. and cable in the laundry room..., and Kiliegh gladly helped him out!

For dinner on Saturday night Justin and Kiliegh went out and when they came home they brought all kinds of goodness back with them!

I was surprised that Kiliegh tried sushi. Out of the girls, she is the one who eats the best and who willingly tries new things but sushi can look a bit odd, especially for a child. She however, didn't just try the sushi..., she devoured it! Sure hers was the chicken tempura and the California roll, but she tried it and she liked it... a lot!

Its not too often that our family is able to consider one day "laid back" let alone a whole weekend, so we were thrilled. So thrilled that when the time came to take Kiliegh to visit her dad we were late, because we forgot. Woops!

Games For His Birthday

Next Friday is Justin's 30th birthday, it is also his weekend to work nights. So, the girls and I decided to give him his birthday presents today. I personally think even as adults it sucks to receive a gift that you end up having to wait on use, even if it is only a couple of days. That's one of the reasons the girls end up getting bicycles for Easter gifts.

From me, Justin received the new Golden Eye 007 Wii game (with the special golden controller).

Justin was pretty excited about that gift... for about a day. Then I got the call... it was from Video Games Etc. letting me know that the Xbox and the Kinects that I had ordered was in and ready for pick up.

I hadn't expected the bundle to come in so soon. When the Wii came out I had spent the night at Wal-Mart to get one and that was for a local organization. When I wanted one for our family I had to drive an hour and a half to get one because every store in the Quad Cities had sold out.

I had just placed my name on the Xbox waiting list and I was told I might get it by Christmas. I figured Christmas would come around and I would be giving Justin a hand made card with a pretty little I.O.U. attached to it.

I hadn't had the bundle in my car longer than fifteen minutes before deciding that I couldn't wait until Christmas to give it to him. How could I hold onto something so exciting for that long?!? I couldn't, plain and simple. I didn't have time to even wrap it. He was home with in minutes of me getting home with the girls from school and I basically threw it at him!

Needless to say he was more excited than I was. He hooked it up and within minutes Kiliegh and Justin were jumping around with out remotes and playing video games. It was really cool to watch.