A Little Update

I have had a lot of people ask about V and how she is doing over all and then I have had a lot comments on how people are coming to the blog to see whats going on but only see that I haven't been posting. I admit that I have fallen behind. In fact ill be back posting soon to catch up on things, but ill do a quick update on V for now.

Miss Vada seems to be doing pretty well over all. She was placed on to Depakote (Valporic Acid) a few weeks ago in combination with the Keppra (levetiracetam). She has been on Keppra since the first wean off of the ACTHar. We got the run around on the Sabril (vigabatrin) and had to put her on something to stop the seizures while we waited for V's case to be approved. They were lasting for about forty five minutes and basically continued throughout the whole night. There was no denying the fact that they had come back.

The Valporic Acid was only intended to be used as a temporary fix because it is not commonly prescribed to infants under the age of two and especially with those who have other medical issues besides seizures. There is a high risk in serious damage being done to the infants liver and the risks increase with age and medical history's such as V's. However, there are risks with every medication and the Valporic Acid seems to be doing the job. We have only seen one seizure since she has been on it. So that is a good thing. We are keeping a close eye on V and doing labs thoroughly to try to watch her liver. So far all labs have come back looking great.

We did finally receive our first package of Sabril (it only took about a month), so now we have it on hand. I'm not for sure on the over all plan. For now, pertaining to her seizure we are planning to keep things the way they are. However, that can change in an split second. I will say this. Its scary how things are going right now. Things actually seem to be going very well. Dare I say..., normal.

As far as V's heart goes. Well, tomorrow (Tuesday) V and I are going to Peoria. We will be staying at a hotel because on Wednesday morning she will be having a sedated ECHO. They want to sedate her to get a better look. The last ECHO showed the "holes" to be larger. However, it's possible that they have not changed and that with her movement and the stenosis that took place due to the ACTH it just looks that way.

Dr. Bramlett, V's cardiologist says he'll know if the holes are in fact larger that day, but he wants to meet with all of the cardiologist and get everyone's opinions. Apparently, they meet twice a week on their patients and apparently half seem to think V is read for the surgery and the other half seem to think that she is doing well. It's hard to say on that one. She is sleeping a lot more than ever..., but that could be the Valporic Acid. Over all she seems to be doing pretty well in the heart department too. Hopefully, we wont have to wait too long for answers.

After the ECHO were going to the Neurologist office for another check up so if anything is going to change with the Sabril and the Valporic Acid that would be the time that it would happen..., unless she were to start to show signs of seizures of liver failure. Which im praying, for the obvious reasons that that is never an issue.

Over all V has been doing very well. She had her first RSV shot about a week ago. She is no longer having a visiting nurse come three times a week. Which is nice. We really liked our nurse and I personally enjoyed her company, but it is a bit overwhelming at times to have someone coming so often. Now, she will be coming once a month. Unless (knock o wood) something medically were to change.

The trips to Peoria are further between than they once were and the seizures seem to be being controlled. Shes not eating solid food, (although I got her to take some nibbles tonight of the homemade food that I made for her, and so did Justin...). She is not taking a sippy or a bottle either, which isn't too concerning at the moment *considering everything else that's going on), but it's will need to be addressed eventually. Those things help with speech later on and that in itself is very important for her speech development to be able to use her muscles in her mouth. Those fine motor skills need to be developing. She does say's "Ma-Ma" clear as day and she will also say "Dada"and "baba" and "neigh neigh", which is said in the "no-no's" place and in the"night night's" place, so it may have two meanings.

She signs for milk (at least we think that's she does) plus she seems to be very interested when we sign to her. We sign for ma-ma, da-da, grandma, grandpa, no, bath, milk, I love you and many others. It'll be fun when she starts too. She is not sleeping through the nights yet. She was at one point, months ago, pre-seizures... I think..., its hard to remember. Right now she is sleeping comparable to a new born. Waking ever couple of hours. I get on an average of four to five hours of sleep total. She is very close to crawling. She has been for quite some time now, but shes almost got it down. In fact part of me thinks that she is already doing it and I haven't caught her yet. Either way, she is a quick mover!

So, that's about all I've got for now. Again, I should have more news on Wednesday.

Thank you all for your continued prayers, concerns and support.

Family By Choice

This has been something that has been on my mind since the moment my foster parents left our house this Christmas. Its a hard subject because I feel slightly torn. I don't want to hurt anyone's feelings and I know that my biological parents may very well read this and quite possibly be hurt by some of what I will write. In the very same thought, I love my foster parents so much that I feel its only right to share my love for them with you.

There is a psychological bond created between a biological child and their parents. A bond that no amount of neglect or abuse will ever break. There is a mental lock internally connecting the three as a single unit even if it is only internally. While I was never put up for adoption I have seen and read about numerous studies/cases where adopted children who have had amazing lives with their adoptive parents still felt that need to find their birth parents. Sometimes, honestly I wish that weren't the truth for me. Sometimes, I wish that it was easy to just let go and say good bye. I wish that that little part of me didn't exist. I don't believe in having or getting "closure" with you biological parents. In my mind there is not key to that lock.

This is where I say "don't get me wrong. I love my birth parents." Because I do. Its that lock I was referring to. No matter what I have endured or lacked. No matter what choices were made or were not made I have always had a place in my heart for my bp's. There has always been a piece of me that has been full of hope and longing. I have always wanted my dad and I have always wanted my mom and in a sense I do "have" them. I just don't actually "have" them as parents. I never really have. Confusing.., I know. What I do have is two people who birthed me and then let others raise me. (I am using the word "let" very loosely. My dad "let", my mom didn't have a choice.)

One great thing that I have received from my bp's are my "parents by choice".

And this is where I tell you how I grew up looking into the crowds of parents during school musical programs and sporting events looking for a glimpse of my mom or dad. I knew that I'd never see them, but I couldn't help but hope.

I remember career day, vaguely. I think that the kids got excused from one day of class to go to work with their choice of one of their parents. I was never able to use that excuse.

I used to envy those children who brought in birthday treats for the whole class. Especially those who's mothers (or fathers) baked something really cool. Like special cookies or decorated cup cakes. I was never dressed nicely, my hair was always a mess and I didn't have someone to teach me about how to be a girl or worse..., boys.

By the time I was sixteen years old I had been in over forty different placement homes. My biological father left when I was young and my biological mother has a mental illness that made it hard for her to have the capability to raise me.

Im not telling you this because I am seeking pity. If you really knew me then you would know that I am not like that. Im telling you this because I am getting to the good part of my story and I needed something to build up the suspense. No silly..., not really..., but isn't there always a storm before the rainbow? Well, in my case there was... a lot of storms, but I did get one beautiful rainbow in the end...

When I was around 11 years old I was in a placement home called Tanager Place. Back then it was a "throw all" for all sorts of children. Over all I thought it was an okay place. However, that's looking back, when I was there I couldn't get out soon enough!

Anyway, I was there for months, im not for sure how long in totality. There I met a sweet lady named Suzan who donated a piece of her free time to a young girl whom I will call "C". Suzan seemed to come once a week to visit with C and for some reason (I think it was my charm) Suzan took an interest in me. For the longest time Suzan and I did things together. Mostly, I remember Dairy Queen and crafts, at least in that stage of our relationship.

Eventually, Suzan's husband Augie started to visit with me as well and from then on they have been in my life. They followed me from one placement to the next. Teaching me how to cook and showing me the artistic values of a good sunrise.

They watched me self destruct as a child who was angry with the world and then develop into a woman who graduated college and made something of herself. My foster father walked me down the isle at my wedding (and helped me catch my breath along the way). My foster mother has talked to me for hours at a time on the phone about everything and nothing all at the same time. They have met not one but all of my children and haven't forgotten a birthday once. They have taught me about love and forgiveness as well as family and acceptance. Somewhere along the way I lost my birth parents but because of that I gained my parents by choice.

I believe that God has a plan. I hate that I don't know what his plan for me is or why he has choose for me to have the life that I have had or have now, but I know that God gave me Suzan and Augie. The parents I never had but was meant to get. (The funny thing is, when I re-read that last sentence, I couldn't help but wonder if I hadn't really always had them in the first place.- A real "there's no place like home" moment.)

This Christmas one of the greatest gifts was to be able to visit with Augie and Suzan. They were coming from Texas to get together with their biological children. They were all meeting up in a city fairly near by so they asked if they could come here too. I was so nervous that they would get sick and then we would miss another visit with them. (About a month prior Suzan was going to come but was exposed to an illness and we were too afraid of V possibly catching something, so we had to decline on seeing her that time.)



I cant tell you how good it was to have them here. I was really struggling with the depression and as odd as it may sound, I needed them here. Augie sat on the couch next to me for awhile and we all talked about random things while the girls played together. It took my mind off of the aching that I was feeling inside and for the first time that I have ever remembered I got that feeling that I have always wanted. The pride of having Augie hold and kiss my baby for the first time. The pride of watching Suzan play with my children. and the humor I felt watching Augie put the Polly Pocket toy together for Kiliegh. There was no uncomfortably for me. There was no awkward silences. No fake moments of playing nice that I often have had with my bp's. I felt as if I had known them my whole life. Funny enough..., I have known them for well over half of it!



There was something extra special about this Christmas. Maybe it was all of the hardships that we have gone through over the past two years. Maybe it was just watching my parents play with our children. Or maybe it was the realization that Jasmine is about the age I was when I first met them. What I know for sure is that this year, I watched my parents play with our children and it was wonderful.


We are not family by blood. Not even by marriage. We are family by choice and for the rest of my life I will forever be grateful that they chose me.

A Handful of {Santa} Memories

One Christmas that I vividly remember is from when I was around six or seven years old. (I lived with my biological mother at that time.) I remember a big beautiful tree. I think that it was real but i'm not certain. What I know for sure happened either on Christmas Eve after "Santa" came and delivered gifts or over a period of days leading up to Christmas Day. What I remember is secretly opening all of my gifts.

I was one naughty little girl and probably deserved a little coal in my stocking that year!

I remember carefully pealing off the tape from one side of each package and peaking in just to see and then I strategically placed the taped back on the same spot so that it was it seemed as if nothing had been touched.

Needless to say, my mom caught on and my punishment was that I didn't get the gift that I opened (I think that the punishment was that I lost every gift that I opened, but she only knew of the one.., I think there were actually several.  It was over twenty years ago and my memory is a bit fuzzy but i'm sure you get the idea.) Turns out that the gift I lost was a Care Bear plastic mug. The top of it was the ears of the bear with a slot for a straw. Nothing overly extravagant, but something that I had really really liked at the time. Funny thing about this memory is that it always makes me smile-- now.

Christmas' with my biological dad and his mom, my Grandma Evelyn were always special and I have many great memories of them as well. "Santa" left notes with rhyming puzzle for me at Grandma's house. I would have to read the note, figure it out and that note would lead me to another. Eventually, a note would lead me to a gift.

My Grandmother made me amazing gifts. She made me my first Cabbage Patch doll. She even remembered a home made birth certificate and everything. She also made me my stocking. It was one of those kits..., I think...? It was made of felt and sequins. It had a brown haired little girl who held a dog or cat in her hands. I wish that I still had it. I would like to make the girls each one that's similar to that. Who knows, maybe ill make one for Justin and myself too. We'll see on that one.

The greatest gift that my biological dad has ever given to me he gave me just a few years ago.  It's a that holds a special place in my heart. Its not only filled with memories of my Grandmother  gift filled with wonderful memories of my Grandmother, once a year it's filled with milk too.  I remember catching Grandma drinking "Santa's" milk from this special mug as well as eating his cookies too. It was the same mug that my grandma used when my dad and his brother were children and then she used with me. Now, I get to use it every year with my girls.

One of the things I love most about Christmas are the memories. I remember a handful of the gifts that I have received over the years, none from when I was really young however. Yet, I remember situations. The opening of the gifts. The stocking. Grandma and her poems... I cant wait to hear the memories that my girls have (or will have). I hope that some day this silly mug will hold a special place in their hearts because of the memories they are able to associate with it.

{2007}



{2008}



(2009 Christmas we spent at Justin's parent's House)

{2010}

A Magic Key

About a month before our first Christmas together (as a couple and as a family), Justin and I went to Wallaces Garden Center. Justin had been working as an electrician at the time and was doing a lot of work there so he had the opportunity to see them setting all of their Christmas stuff out. Knowing my love for Christmas he was excited to take me and I was shocked at how much "stuff" they had. Wallace's has an amazing store. It's not just for gardening but for the inside of your home too. Their selection during Christmas time is almost overwhelming..., in a good way!

We hadn't been in the store more than a minute when we ran across "Santa's Magic Key".

It's such a fun idea for those who live in apartments or a house with out a fire place. Naturally we bought it and when we showed it to the girls they were thrilled. They seemed also to be very relieved as well. Apparently they were very concerned about Santa not being able to deliver their gifts with out a fire place. Which is funny to me since we have never lived anywhere with one.

Each year the key is given to one of the girls. I think Jasmine started off with it the first year...

and then Kiliegh. It could have been vice versa, either way, they have both had a chance to leave Santa his Magic key.

This year, the key was passed to Vada. We thought it was only natural for her and I to do it together since it was her first Christmas. (Plus, Justin fell asleep early and accidentally forgot about the key...I benefited on that one, usually he does the key with the girls.


I have to say that she took her job very seriously.

This Is Your Life

Here's the deal. I quit taking the Pristiq already. I started taking it on the 18th and took it on the 19th-23rd. The 23rd being my last day.

Did it not help?
No, it did I was actually feeling a lot better. So much so that I am now scared to start feeling the way I was before I began the medication. Truthfully I don't want to ever feel that way again.

So why did I stop taking it? Because I am confused.

Vada was doing alright with the bottle in the beginning. On the 16th I attempted all "day" to give Vada breast milk in a bottle. I didn't nurse her once and she didn't eat once. I have been told by several..., several people that eventually a baby will get hungry enough and take the bottle. However, this is my baby, and im weak. So, by "bed time" I was nursing her and I nursed her all night. I knew that in the morning I would try again and that this was quite possibly the last time to be close like this with her so I really embraced the nursing and her.

On the 17th (Friday), I began again and the very first bottle she took! I took it as a sign. It was time. I was saddened and relieved because she had done so well and soon I would be feeling well.

On the 18th I took my first pill and she was still doing alright. I was pretty out of it from the medication (which for me is typical for the first three days). Half way through the day we were out of the hand suppressed breast milk and we switched to formula and she stopped taking the bottle.

On the 19th (Sunday), she started to take the bottle with the formula and all seemed well. I was beginning to be more alert, but I was still very tired.

Things over all seemed to be progressing nicely. It was a slow process. There were times that she wouldn't drink at all and others where she would. I was and still am concerned with the amount that she is eating. As of right now she is taking maybe six ounces of formula with in a twenty four hour time period. Justin thinks that she will do better, I think that she is not doing well enough now, as it is.

Anyway, this last Thursday Vada and I went to Peoria to meet once again with the neurologist. Vada unfortunately had to make two trips to the lab that day for blood work. Each time after the draws were done I would pick her up and she would immediately stop crying and start searching. She would pull at my shirt, say "ma-ma" and would rub her head right where she was used to finding her comfort. It broke my heart.

Ever since she has regressed with the bottle and I have stopped taking the medication. I want to nurse her so badly. I want her to eat and be healthy and find the comfort when and where she needs it. I want her to have energy again and to be awake and play more.

But..., I want to feel good too. Not just feel good with her and while I am nursing but over all with everything. I want to be me still. I want the girls to have their mom and my husband to have his wife. The one that jokes and laughs and does really stupid bouncing dances when I get excited (dont ask). I want them to be happy too. I want a clean house and the energy to clean it. I want to find joy in all o the things that I once enjoyed doing. I don't want to be this blob of a person that I am when I am not on the Pristiq.

Now I am right back where I was. Only its almost worse than before. (not the depression part, just the decision making part) Tomorrow is the day that I can start to breast feed again. (I called a pharmacist and found out the half life of the medication.) So the choice is mine. If I start to breast feed her again. If I do start then I will probably ruin any progress that I have made with the bottle, not that we have made much progress anyway and I would be nursing her which would be great. Or, I can continue to bottle feed her and get back on the Pristiq. Either way the time is now to choose because I am going to dry completely and then the option is no longer an option. Justin says that he supports what ever I choose and I believe him, but I know that he wants me back the way that I used to be too. Who could blame him. He deserves to be happy too.

Am I making too big of a deal out of this? Is it that obvious and I am just over thinking things?

There may be other factors to consider in this mess. Vada has been sleeping a lot. It could be because she is not "eating" enough, or it could be her heart, or it could even be the Valporic Acid that she is taking. (VA can effect the liver and make the Pneumonia levels increase, causing sleepiness along with other serious side effects.-We are waiting for the lab results from Thursday to let us know if everything is okay.) She is not "eating" nearly enough, at least I don't think that she is. She hasn't ate solids in over a month now and she's not taking in an comparable amount to what Jasmine and Kiliegh were eating at ten months. But then, is it really fair to compare her to them? We have no idea what she would normally "eat" anyway. She has been through so much lately with medications that this may be her normal. We have been told that infants who have Down syndrome are typically smaller than babies their age who do not have Ds. She has lost weight lately, maybe she is just getting down to her "normal" size and this is her normal eating pattern? I almost feel like that is wishful thinking.

There's one more thing. Is there really any "safe" medication out there that wont be secreted through the breast milk? There are a lot of "what if's" with that single question.

I just don't know what to do. I feel like my brain and my heart are in a battle and I don't know which side to take.

I wish that life really did come with instructions. I wish that we were given a book at birth called "This is Your life". Each day we would open the book up and like an daily affirmation it would tell us what to do. Although..., that may make for a pretty boring life and I wouldn't want to see my future all of the time so maybe it could be something like a magic eight ball. Yeah, that would be perfect. Shake it up. Ask it my question and get a clear answer. I have so many questions right now and I really need answers.

Hopefully, tomorrow I will have a better "feeling". I plan on calling Peoria first thing in the morning for the results of all of the labs that were done on Thursday. My doctor who prescribes the antidepressants is gone for over a month on her own personal medical leave so I am going to call my family doctor and try to get in right away to see her. Originally she is the one who gave me the Pristiq, so I am slightly hopeful that she will have another idea for me. Who knows, maybe I can do both.