Sunday, October 31, 2010

A Slave to Halloween

Today has been the beginning of one of the things I enjoy most about the holiday season. Jasmine and Kiliegh have been running in and out of the house laughing and playing. Each time they come and go a crisp breeze floats in from outside reminding me of all of the leaves that are on the ground and the ones that are soon to follow. Autumn has a smell. At least I think it does. I wouldn't say its a real clean smell, or fresh like Spring, but its comforting. I like it.

Since the past year has been sketchy on the family activities I planned on making today a little extra fun for the girls.

For lunch I made "Swamp Noodles" and Pumpkin sandwiches.

For dinner I made "Mummy Dogs".

I also made "Bloody Cocoa Crispy Bars" and Sugar Cookies that we could decorate..., and then of course to EAT!

Jasmine had decided to dress as a Hippie. Funny thing is..., she asked to borrow my clothes and jewelry for her costume. Im not quite for sure what to think about that, but she made one groovy hippie girl!

Kiliegh wanted to be a butterfly.

This was the second year (not consecutive) for this idea. She was a monarch a couple of years back. This year she choose a huge set of blue, white and purple wings..., and that was it. I was left piecing the rest of the costume together. That was annoying! It was so hard to find the right colors and know how to make it look like something resembling a butterfly without having to sew something together. I don't sew. Justin does.., but he was working so it was up to me.

I feel like over all I did a pretty good job. She really liked it, so, if it was good enough for her than it is for me too!

I had originally planned on not dressing up Vada because I wouldn't be taking her out for Trick or Treating and I wouldn't be answering the door while holding her, so no one would actually even see her in her costume. That was my thought process.

The thing is, we would be seeing her not dressed up, on her very first Halloween. So at the last moment I bought her a costume.

It was a $10.00 elephant costume from Hy-Vee, not any of the ones that I had been looking at, but a costume non the less. It was too long in the arms and legs, but it was perfect. It was important for me to have Vada included in Halloween even if she could join in all of the activities.

I filled our witches Calderon with tootsie rolls for the kids who came to our house...,

and Jasmine and Kiliegh brought home even more candy than we handed out!

This Halloween celebration was a good one. We were all here to do the pumpkin patch, the pumpkin carving and then we were all able to spend some time together on Halloween night.

Halloween Past and Present

Today, is Halloween! A day that I have always enjoyed. Most people who know me know that I grew up in foster homes. Besides all of the moving around, it wasn't too bad and really it's a minor detail of my life now. I think that the holidays were always harder for me than the "regular" days were. I had always felt that the holidays were a time meant for families to be together. So, when this time of year started to creep around I really began to feel a longing for my own family.

Halloween was always an exciting time for me regardless of who I was with. It wasn't the free candy that had lifted my spirits, although I know that it did help! Halloween was something I could do and "fit in" while doing it. Halloween never required me to have my family participate. It didn't even require a store bought costume. All I needed was a little imagination...and a bag to catch all of the goodies in.

On Halloween I could be anyone or anything and no one would know the difference. I would run the streets of my current neighborhood in disguise and no one would see me as "that girl from the foster home"..., or so I thought at the time. I would say those magical words "Trick or Treat" and be acknowledged with a warm smile and something sweet to eat. It was a very full filling arrangement.

Today, Halloween holds a different meaning for me. I no longer need to run the streets pretending to be something or someone that I am not. Today, I know who I am and I know what it took for me to get here. I am no longer running from myself or running in search for something better than what I have. I am comfortable being me and I am proud of the life and the family that I do have.

I now enjoy Halloween in a whole new way. I still use my creative side, but I use it to help create new memories for all of us. My only hope for the girls is that as that as they go on their own treasure hunt tonight they will take joy in what or who they have decided to dress up as but take pride in who they really are.

Saturday, October 30, 2010

Carve a Pumpkin Day

Up until about twenty minutes ago I had no clue that there was really a "holiday" called Carve a Pumpkin Day. I'm not for sure if it's an actual holiday recognized on the calendar but I guess, it's for real...? It makes since, I suppose. Where else would we get the idea from...?

Anyway, Carve a Pumpkin Day is suppose to be on the 31st of October. However, we don't claim "Carve a Pumpkin Day" as a holiday. We do however carve pumpkins and it usually takes us a day. So do with that what you will.

It seems like this year was harder than ever to find specific days where we were all together, but we did it. Back to back days in fact. Saturday and Sunday! A day for the patch and a day for the carving of the pumpkin...woo ha ha ha..(sorry adding dramatic sound effects doesn't work to well with writing... especially when I don't know how to spell those ghastly sounds).

Its funny how the parents are the ones who end up doing most of the work when carving the pumpkins. Here, its Justin that does most of the carvings. Us girls are pretty wimpy, especially this year! Although..., two years ago we were rock stars and achieved some pretty rocking jack-o-lanterns! This year..., eh, not so much.

Kiliegh did not want to clean out her pumpkin.

She acted deathly afraid of the slimy guts of her friend Jack.

She looked physically ill each time she stuck her hand inside the belly of her pumpkin.

Towards the end she wasn't so bad. I was able to get her to help clean all of the seeds off with me.

I personally used excuses for my pumpkin carving slowness..., I have to take care of Vada. I have to take pictures... I have to get something to eat...

For the most part I did carve out most of my pumpkin. I did an owl sitting on a tree branch. Not my best work. The owls eyes were the last thing I had to do. Should of been the first thing that I did because I almost ripped its head straight off. That's when Justin became involved..., my hero.

Jasmine, I think probably had the worst time with her pumpkin. She wanted to carve it and make it look like a hippie, because that is what she was going to be for trick or treat night. She had the right idea..., to draw it on the pumpkin first, but that's when all her creativity stopped.

For Jasmines costume she has a headband that she is wearing. The headband is Indian "like" with a peace symbol medallion in the middle of it. Hanging from the medallion are some beads. That is what she wanted to put on her pumpkin. That and glasses..., very groovy and hippish. The problem is that if you ct a headband in the pumpkin you are inevitably cutting the pumpkin in half. For the life of us Justin and I could not figure out how to make it work for her.

Jasmine was pretty fed up with the whole pumpkin carving ordeal and just wanted to be done, but I'll give her credit because she didn't give up. I'm not saying tears weren't shed or that tantrums weren't thrown... because they were there too! However, after establishing that there would be no hippie pumpkin this year she starts cutting into its flesh all along saying what she is going to do. This time she is going to just make a peace symbol. Here's where problem number two came in. If you cut a circle into the pumpkin ultimately your just going to have a huge hole and one pissed off little girl! After about her second cut she realized what would happen and again became very overwhelmed. That's when Justin stepped in and together the two of them came up with something that resembled a peace symbol as well as a cyclopes.., but please, don't tell her that I told you so.

This year was Vada's first pumpkin experience. She was able to make it to the patch. She was able to sit with us while we carved the pumpkins and she was even able to dress up in a costume for Halloween.

Usually, for our pumpkins we choose hard patterns. We've done all kinds of really impressive pumpkins. I have liked every pumpkin that we have ever carved, mainly because we have done them together. This year however, these pumpkins were my favorite. This year, all of the pumpkins kind of felt "old school".

You know, before all of the patterned stencils, back when the pumpkins had crooked teeth and triangles for eyes. Looking at our family pumpkins reminded me of when I was a kiddo out on the town in hunt for some candy!I remember looking at all of the different carved pumpkins and wondering what kinds of families they came from.

Now, I'm on the inside and with Justin, I'm giving my kiddo's what I didn't have.

It's funny that cutting into a vegetable (or is a pumpkin a fruit?) could remind me of that.

Thursday, October 28, 2010

An Escorted Trip to Peoria

Last night I took Vada to Trinity ER for a few different concerns.

Over all she checked out alright with the exception of having some labored breathing and a elevated heart rate. The ER doctor at Trinity was a honest doctor and said that Vada's medical condition was above what he had ever learned. He said that Trinity was unable to give her the heart evaluation that he thought she may need. So he said that he would like us to come to Peoria. The doctor said that he didn't feel comfortable having me drive her to Peoria due to her heart conditions and the difficulties that she was having so we went in an ambulance.

The drive went fine, besides the EMT calling Vada a "Down's Baby"..., lovely. I didn't correct her, I was tired and I had to ride with her for the next hour and a half. I did however emphasize in "people who have Down syndrome", verses the labeling. Its so annoying at times. I know that she probably didn't mean anything by it, but still.

Over all the night went alright. Lot's of lab work, which was pure hell. Vada is incredibly hard to draw blood from and there was talk of doing another Central Line. Good thing it was just talk!

Over all it got a bit confusing. Labs were coming back irregular and setting off all kinds of questionable "alarms" causing Vada to be moved from General Pediatrics to Critical Pediatrics. Long story short..., after several do overs, it turns out that over all her labs were just fine.

We met with the Cardiologist today and he is concerned now about Vada's heart. With her labored breathing, tachycardia and her weight gain from the Cushing's he says its time to repair her heart. It's not on an emergency basis so we are going to wait until she is done with the ACTH which is on November 11th. On November 12th we have an appointment with both the Neurologist and the Cardiologist. Vada will have a full heart exam including an ECHO that day and we will discuss the surgery and what to expect in more detail.

This coming Monday all of the Cardiologist have a meeting and during that time they will be discussing Vada. I am expecting a call from Dr. Bramlett, Vada's primary Cardiologist with a surgery date.

Currently we, (Vada and I) are still in the critical pediatric area of OSF awaiting discharge. She is being sent home on a new medication called Lasix. Its a diuretic medication used to help with fluid retention and high blood pressure. I am so grateful to be leaving so soon and with nothing more wrong than what we expected. I am very nervous about her heart and the possibility of more seizures, but I am going to be doing a lot of "self talk" and even more of prayer!

Saturday, October 23, 2010

Fine Dinning the Wilson Way

By the time we had finished at Tanner's Apple Orchard, it was close to 8 P.M. and we were all pretty hungry! The problem was that the only thing around was a "mom and pop shop" that we couldn't go into because of the need to keep Vada secluded. We had about an hour drive until we got home and the closest drive through (yuck!... It's funny that I say yuck to a drive through, but not to what we actually ate!) was at least 30 miles away and that was if you were going in the opposite direction than we needed to go.

So..., we improvised. We got the phone number for a Casey's gas station that we had passed on the way to Tanner's and ordered a pizza for carry out.

Since the car was full of our Tanner's purchases and the girls' stuff to keep them entertained on the trip we decided to sit on the gas station bench and have our dinner.

(I bet the police officer who I asked to take this picture thought we were an odd group!)

It was all Justin's idea, and you know what... it was actually really good pizza!

See..., we really are Making the Most of Today!

Picking Pumpkins

Autumn is my favorite time of the year. Besides the transition into the bitter cold winter weather, there is nothing that I would change about Fall. I enjoy all of the smells, the coolness in the air, the rainy days, the baking and I especially enjoy the holidays that start in the fall time and continue throughout the rest of the year!

Picking out our pumpkins and then carving them has always been fun to me to do with the kids and Justin. I don't recall ever doing it as a child but now, it has become a tradition.

We haven't been able to do a lot of activities together as a family over the past year, especially with in the last two months. Other than going to the hospital and doctors appointments Vada and I have been at home. We do however try to go on walks whenever we can. Since you can't get sick from being outside I figured its good for us to be out in nature and in a different environment.

Since going on walks is an approved thing to do I figured that going to the pumpkin patch would be too. After all, Jasmine and Kiliegh have been so great about all of the stuff that we haven't been able to do, at the very least we should try to do this.I figured if there were too many people around then Vada and I would just sit in the car and the girls could go off with Justin.

Justin's sister had sent us two of her boys first Halloween costumes for Vada to wear this year and I was going to dress her in one of them to wear at the pumpkin patch. Unfortnatly, she couldnt fit into either. So I just dressed her in layers. I did however, put her in the jacket that her Aunt Lindsey made for her!

We have yet to go to the same patch twice in our almost six years of being together. Not out of habit, more so out of trying to find "the one". This year I wanted to find the "perfect" one, the one that had everything! I am pretty for sure that I found it too! It was Tanners Orchard.

They did seem to have everything! There was pumpkins and apple picking, a petting zoo with lama's, goats and rabbits.

They had pony rides, a store and a restaurant (We didn't eat at the restaurant). They had a huge playground and a few of those wheel barrels attached to a tractor for the kids to ride on.

Tanner's also had a real school bus to play in,

a wooden air plane and pirate ship.

As well as real tractors and miniature toy tractors which Kiliegh clearly enjoyed!

I was SO impressed with just the play ground. If we lived in that area it would be a place that I would take the girls to all of the time to play. They had so much fun running around and I had a blast watching them. It was by far better than any play ground that we have around here (except maybe for Rocket Park).

When we first got there, around 5 p.m. it was packed, and I was a bit bummed because that meant that Vada and I would be sitting this one out. However, it turns out that the majority of the people we saw were actually leaving.

Since the store was still pretty busy we walked around and looked at everything outside. They were packing up the ponies, so the girls were unable to have a ride this time around and the tractor rides to and from the maze weren't going either. It was overcast and the forcast had called for rain so we decided against going into the maze.

Once we were able to go into the store we were pleasantly overwhelmed with delicious smells. They had a small bakery where the sold their own apple cider donuts, homemade breads, muffins and cakes. They also made jams, butters, seasoned spreads, kettle and caramel corn, caramel apples, home made peanut butters, an assortment of fudges and yes..., even delicious apple cider! In fact they had a couple of open taps for sampling..., we each had a few. Plus, we also bought some, its delicious!

I was a little confused with the pumpkin picking however. I am wondering..., since Tanners is an "Orchard" and not a "pumpkin patch", if your able to go into the patch to pick your pumpkin. You can pick your own apples. Nevertheless, I didnt ask. We found pumpkins stacked up front and we were told that what you saw was what you get. There were no others, so maybe we came too late in the year?

Either way..., we found great pumpkins!

Friday, October 22, 2010

A Speedy Wean

Not a whole lot has changed since we have last seen Dr. Jennings. Vada has put on a good chunk of weight, which has us all a bit concerned. She is over nineteen pounds now and hasn't really grown in length. Currently she is wearing 6 to 9 months in pants but 12 to 18 months in tops because of her upper body and head size. Her weight gain is because of a few different reasons, but they for the most part, they lead back to the ACTH.

The first contributing factor is from what is called Cushing's Syndrome, not to be confused with Cushing's Disease. It is very apparent in her face, neck and abdomen. To control the CS Dr. Jennings is weaning Vada off of the ACTH quicker than planned, by one week. Her original day to be off was November 19th, now it's the 11th. There has been no signs of seizures since she was first placed onto ACTH so it seems like a safe thing to do.

Another side effect of ACTH or any steroid that I have ever been on, is being hungry all of the time. Vada wants to nurse ALL OF THE TIME, especially at night. During the days usually aren't too bad. She wants to nurse every two to four hours which is more common in a new born than at her age. She has however taken to solid foods and that also seems to subside her a bit. She wont take a bottle, which is fine, but I am trying to introduce a 'natural like' sippy cup to her, with water. Shes not too interested in that either, but on that, I will be persistent in constantly reintroducing it. By giving her water I am hoping to cut down on her calorie intake, but first she has to start drinking the water.

It's the night feedings that are the worst. Between the time she falls asleep (about midnight) and all of the times that she wakes up to nurse, her and I do not get much rest. There have been times when she has woke up seven times wanting only to nurse and nothing will calm her but nursing. Usually, its about five times though. Not letting her nurse is really not an option. When she wakes up she is in a decent mood. Tired and kind of out of it, but knowing what it is that she wants. If I try to hold her off from nursing she becomes agitated and her body movements become distorted and tightened, like she is very uncomfortable. It's not quite a tantrum like you may be thinking. It's hard to explain. It'll escalate until I do nurse her. I don't like attempting to hold her off for too long because then I become concerned with her heart issues. In my opinion she has enough stress on her heart as it is. Since the doctors know of her eating/nursing pattern and have never told me to stop what I am doing let alone change anything, I plan on continuing our nightly binge nursing sessions.

To help with her appetite we are trying the drug Topamax. If you follow my blog then this name will probably sound familiar to you. It is something that I brought up a couple of weeks ago. We were going to put her on it because she was having a hard time taking the Keppra. Actually, I was having a hard time getting her to take it. However, I figured out a way that works and we decided against the Topamax because the amount she would be taking would actually be more than if she just stayed on the Keppra. Now, however, the theory is that the Topamax has a side effect of making you sleepy and not hungry. It doesn't sound ideal when you are thinking of having a baby use it, but in our situation it sounds like the right choice. We have to wait until Monday for our pharmacy to get it in because Dr. Jenning's wants us to try the powered form that comes in capsules. He thinks by adding it to some solid food she may have an easier time ingesting it. One can only hope.

Other than the slight shift in medications nothing else was done today! Especially, no lab work! I did make it a point to ask Dr. Jennings again about when he thinks it would be okay to bring Vada back around friends, family and the general population again. Since Justin was with me I thought it would be a good thing for him to hear straight from the doctor.

On a side note..., in the beginning of all of this I had a friend who had already been through this situation with her daughter tell me about the isolation that would take place. I had my doubts in its extremeness, so because of my doubts I feel as if other may have the same ones. It does seem a bit crazy that Vada cant go to church with us or to family functions or even that we cant have anyone here at our house. A little too extreme, maybe. However, after educating myself on the situation, I will keep her away from everyone for as long as I am told to and I wont second guess it because I know how important it is for her health.

Having Justin hear it from Dr. Jennings kind of reaffirmed things for me. Since Justin had yet to meet Dr. Jennings let alone come to one of the neurologist apportionment's, I was nervous that he thought perhaps that I was over reacting..., you know, being overly protective.

Here's the deal, straight from Dr. Jenning's mouth "Not a good idea until after Easter".

Why Easter? Well, Vada has about three more weeks of the ACTH. Then she has to get it out of her immune system before her immune system can start building itself back up. Then, we have to go back to her four month vaccines and slowly start to get her "up to date".

Some of the vaccines she will never be able to get due to their history of breaking down the barrier for seizures or possibly causing them. Getting her "up to date" will obviously take time because there are several missed vaccines as well. Plus, she was already on a slower vaccine schedule due to her heart issues.

IF Vada were to catch a cold it is very possible that she would not be able to fight off whatever she caught and it could be fatal. Since we are now getting into the Winter and cold/flu season waiting until Spring is a safe plan for Vada.

So depending on the weather, how Vada is doing and how the rest of the family is feeling (because we get sick too) we are planning on bringing her back out into the public..., to church on Easter Day.

Lookout Tower

Today was the first time that Justin has been able to come to a Neurologist appointment with Vada and I. Jasmine was off because of parent teacher conferences so she came as well. For whatever reason I figured I wouldn't need my camera so I didn't bring it and sure enough I should have.

I have drove the same way to and from Peoria close to a hundred times now, maybe more. I know where the gas stations are that I prefer to stop at, as well as the little town of Galesburg that has a Hy-Vee, if I were to need anything that a gas station couldn't provide.

A little past my half way marker is a rest stop. The only rest stop that I can say that I have ever liked. The Spoon River Lookout Tower-Rest Stop. I have only stopped twice in all of my trips. Once when it was just the girls and I and then again today with Justin and Jasmine. I like it because there is a nicely sized playground in front of the parking lot. So I can pull over, change and nurse Vada while still keeping an eye on the girls as they stretch their legs and play. Plus, behind the playground is two bridges and there is a path to follow to, over and then back from those bridges.

Today, we were running ahead of schedule so we decided to stop. After using the "facilities" we decided to take the path and see where it led us. Apparently, I don't pay much attention to the finer details because I had no idea, up until this very day that there was a huge tower you could go onto. Actually, I didn't pay enough attention to the name of the rest stop. Otherwise, I may have wondered why "Lookout" was in the title. Anyway, Jasmine led us as we walked up a nice set of stairs leading us to the tower. Once we got to the top of the stairs I sat down with Vada. I was nursing her this whole time and I couldn't imagine doing it while I was climbing a tower. The stairs was enough for me.

There is something about nature that comforts me. In one exhale I could feel all of the stress and tension float out of me. The trees were all different shades of colors. The ground was covered in the leaves that could no longer hold on to their branches and a squirrel danced around hunting for his buried treasure. Off in the distance I could hear Jasmines giggles and Justin's voice while he pointed out things to see to her. I sat at the top of the stairs holding Vada and thanked God over and over for that very moment.

When I was pregnant and having to come up every week or so to Peoria the weather was always dreary, rainy and cold. Although we know that it was just the weather, Justin and I had always felt as if it were a sign. We always received bad news on those days. So, I had actually grown accustomed to relying on the weather. By the time I was in the car and on my way to Peoria I had felt as if I already knew how the visit would go. I know it was foolish and actually if I look back almost every visit had some newly discovered piece of information, usually being something negative, so I know that the weather was just a coincidence. Besides, bad news made sense for our situation, considering the only reason I was going to Peoria was due to all of the complications with the pregnancy.

Today, while sitting on the stairs I couldn't help but wish that I could place our future on this moment. It was beautiful, in every way. The only thing that was missing was the sounds of Kilieghs voice.

I have a very hard time not knowing what the future holds. As we are coming to the end of Vada's ACTH treatment I am becoming fearful of God's plan for us again. I don't want to be scared anymore. I don't want to be bitter or resentful or even ungrateful for what God has given me. I want to look at my life like I was looking at this moment. Perfect, beautiful and peaceful. Sometimes its a hard thing to do. I get caught up in a moment and reflect only on that. I am however getting better at seeing the whole picture, so that's a good thing. I am also more aware than of what I do have have and I take glory in that every moment I have!

Wednesday, October 13, 2010

Waffle Cookie Wednesday

I am not a fan of Waffles, at least not the traditional ones. Give me some frozen Eggo's and I am good to go! I don't even own a waffle iron/pan. So, when I opened up one of my magazines and saw a recipe for chocolate waffle cookies..., i'm not for sure what I was thinking! I'm not even a big fan of chocolate, but I called my mother in-law, because if there's something that I need they will either have or find it for me. A waffle iron was something I knew that she had. (She had made the girls waffles for breakfast several times.)

The recipe seemed like something quick, easy and fun for all of us to do together. Plus, in the end, there would be a sweet treat for the girls.

Its a rare event for us all to be home at the same time. Especially when there is time to spare! So, i've really been trying to take advantage of those moments.
The cooking time was one minute! The clean up was just as quick.

The cookies were NOT like regular cookies, they were more cakey, and a bit dry. They weren't really a bad cookie (if there is such a thing), but they were definitely not a Tollhouse. They kind of reminded me of something other than a cookie, or a waffle. I don't think it takes too much imagination to figure out what i'm talking about. (Man, i am immature!)

Regardless of the looks, the girls seemed to really enjoy making them.

Once we put some frosting on them...,

...along with some festive sprinkles they looked a little closer to being edible. Im not 100%, but I am pretty for sure that if you add frosting and sprinkles to just about anything..., kids will eat it.

I must have poop on my mind.., maybe because of all of the dipes I change, but I think the frosting looks like poo too.

I think over all it took forty-five minutes to complete. However, Justin did pre-measure all of the ingredients and made the frosting ahead of time, so it would be that much more quick and easy.

I would love to hear easy and fun things you may be doing or have done.I am always trying to find new things that we can do as a family. Especially when that 'something' means using stuff that we already have around the house!

Waffle Cookies

1/2 C. melted butter
2/3 C. sugar
2 eggs
1 tsp. vanilla
1 C. flour
1/4 C. cocoa
1/2 tsp. salt

1. Mix the wet ingredients followed by the dry. The batter will be thick (may take a minute to set up).

2. drop spoonfuls of batter onto iron. Close, and let cook for about a minute.

3. They are quick to cool. Frost afterward. I used a basic Butter Cream frosting recipe.