Tuesday, December 28, 2010

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.



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


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.

Sunday, December 26, 2010

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.

Saturday, December 18, 2010

First Time Feedings

My husband is a beautiful man. However, that patch of hair under his nose is something that I don't look forward to every year! However, it is there for a good cause and before I talk about anything else I feel the need to explain his looks first.

Over the past few years a group of friends (all males, naturally) grow mustaches in a slightly competitive way. They start the growing process on Thanksgiving with a cleanly shaven face and go until about a week before Christmas. At the end of the growth spree they all primp to make some pretty impressive looking mustaches.

What would be the purpose of this ritual be? Well, like I said, its for a good cause. To raise money for the local Child Abuse Council. It started with a group of our friends and a couple of years ago it became sponsored by local radio station icons Dave and Darran. Now its known throughout our whole area. I do think it's a fun idea and I always make an improper comment..., "What better way to raise money for abused children than to make yourselves look like pedophiles." (I know that the statement is wrong in many ways...)

So yeah, I totally support the cause, but the days leading up to the event become quite hairy. Ha!

This year it just so happens that we attempted to switch Vada from being breast feed to the bottle and Daddy was able to feed her..., only he had a huge mess on his face.

Really, it's okay though because the look on both of their faces were priceless.

It only lasted for a few brief seconds and I can only imagine how Justin felt to finally be able to feed his daughter.

Jasmine even had the opportunity to attempt a feeding.

Some day (when she is forty) she is going to make a wonderful mother. She is so great with Vada.

Monday, December 13, 2010

Christmas Events

This year I have officially made it to all of the girls Christmas programs. Last year was the first time ever that I missed not one but all of the girls' events for the holidays. Up until that point I had successfully made it to every event and program that both girls had ever had. Which I am quite proud of.

This year both Jasmine and Kiliegh were angels in our church program yesterday. Jasmine had a several lines of her very own and she did a very nice job. Kiliegh sung songs with the other angels and looked beautiful doing so!

On a side note, I have been going to our church for over four years now and I still am uncomfortable using a camera during any program. Now that I have my Cannon I am even more hesitant on using it because you can her the shutter (which I personally love the sound of). So I didn't get the best of pictures from the church program.

Jasmine also had a leading roll as a narrator in her program for school. She announced other grades and what they were going to be singing. I was very impressed with her confidence and with her ability to enunciate. She talks so incredibly fast here at home that it becomes difficult to understand what she is saying. She had no issues with that today. She spoke clearly and she sang beautifully! It was hard to get a good picture of her with a smile on her face however.

Afterward when I picked her up from school she confessed to being terribly nervous. Poor girl, if she only knew how great she was doing, when she was up there.

This year was Jasmines forth year of chorus. The group sang separate from their grades after all of the grades had their turns. My favorite song was The Carol of the Bells. Its such a beautiful song and every time I hear it I get goose fleshed. They did a nice job at singing it especially considering that they are fifth graders. I personally think its a hard one.

I arrived to Jasmine's program thirty-five minutes early and I still had to stand in the back. While I have fantastic zoom on my camera (because I have multiple lenses) my flash does not do the job for lighting situations in auditoriums. I knew of a few of my Christmas gifts that Justin got for me this year..., one being a flash for my camera. However, I was running behind and didn't have the time to get it before I went to Jasmine's program so it was harder to get nicely balanced pictures. I did pick up the flash on my short break in between programs and I was able to use it during Kiliegh's program. It was the first time that I have used this new flash and I was thrilled at the difference it made. It was so exciting and the difference was undeniably evident.

Kiliegh did a very nice job during her Christmas program as well. This year she joined her schools chorus. It was her first year and while she seemed to really like going to practice she could never tell us what she had learned. It was always "I don't remember". So I was sure that I would be sitting there watching her "pretend" to sing the songs.

She surprised me. She stood up on the stage and sang! She stood tall and she had a smile on her face and a look of confidence that I don't see coming from her too often. (Kiliegh is a bit reserved and she can come off as very shy.)

Today I left the house at 9 AM to go to Jasmines school and then came back home to nurse Vada at 11:30 AM only to leave again twenty minutes later to run to Kiliegh's school. Kiliegh's program lasted from 1 PM until the school released at 2:40 PM. It was soooo long! But I was there and I had front row seats at hers so I was grateful! After Kiliegh's program and release we had to drive back down to Jasmine's school to pick her up. It was such a long and busy day. I am glad that it only happens once a year!


I attempted breast feeding Jasmine for one week when she was first born. I had no idea what I was doing, no idea how to ask for help or even if I should ask and so I became engorged and chapped and decided to stop trying. I was just barely nineteen at that time and I never thought much about my choice one way or the other.

When Kiliegh was born she was a preemie. She weighed 3 and a half pounds. The first five weeks of her life were spent in the NICU and during those five weeks I pumped religiously every three hours. I was determined to nurse her and I did. It was amazing. I was proud of myself for doing it. I thought quite a lot about how I felt almost robbed of this bonding opportunity that I could have had with Jasmine if only I had had the right support. When Kiliegh was around four months she began showing signs of GERD and when I took her to a GI specialist I was told that she should be on this expensive formula and that I should stop nursing her. So, I listened.

When we found out that Vada had Trisomy21 we were told that I probably would not have the opportunity to nurse her because people who have T21 have issues with low muscle tone, their tongues and coordination. I was devastated but determined to try non the less.

As soon as Vada began showing signs of improvement after her GI surgery I was given the opportunity to nurse her and guess what..., my "Down's baby" (this is sarcasm... don't ever call her that in my presence if you want to remain my friend) the one who couldn't and wouldn't...did! That's right she latched right on and showed all of those who put her into a stereotypical pile that she was her own person and that she could do it. There was a little confusion when we came home because at that time the NICE didn't have a place for parents so the nurses bottle fed her once during the night when I was sleeping in the hotel. So for a couple of weeks I used a nipple shield. After awhile I was able to take the shield off and she could nurse in any position at anytime. It was the most rewarding feeling.

It's been almost ten months now. I wanted to nurse her for at the very least a year. I don't know why a year was the minimum that I set as a goal, it just was. Now, today, Justin is taking pictures for me while I am nursing Vada for one of the last times. I haven't fully conjured up the courage to stop nursing so I can take the antidepressant but the day is coming. I want the me back that I know I was and I know that Justin and the girls do too.

I got dressed up today for the girls' Christmas programs at school. When I was in between the two shows I stopped at home to nurse Vada and since I was feeling pretty I asked Justin to take some pictures.

Ones that I could look at and be proud of.

Ones that would help me remember the bond that Vada and I had together.

Ones that would remind me of how she is not like everyone else. She is her own person and together her and I beat the odds that we were given.

It's hard looking at these pictures because they are just what I asked for. They are beautiful and at this moment in my life this bind that I have through nursing is the only thing that fulfills me and makes me feel worthwhile. Its scary to know that soon I will be saying good bye to it.

Sunday, December 12, 2010

For the Birds

Our neighbors son sits outside on his mother's back door steps every time he comes to visit her. He smokes his cigar which smells like vanilla and in the summer its scent fills even our air with its sweetness.

He is a very friendly man although I am ashamed to admit that I do not remember his name even though I am sure that we have introduced ourselves at one point or another.

He always says hello with a warm smile on his face and the girls enjoy talking with him when they are all out at the same time.

He taught them about rats last year. Our neighbors on the opposite side had them and they were going back and forth between our garages. He told the girls about the poison that he used to "get rid" of them and they were always eager to tell them when and if they saw another one scurrying about.

This last fall he showed them how he could hold a peanut (un-salted) in his hand and the chipmunks would run up to him and take them. When the weather warms up i'll be purchasing our own stash of peanuts in hopes to lure the chipmunks over to us too.

The girls and I used to feed our squirrels but Justin made us stop because they were living in a hole in our tree and continued to damage the tree. (We ended up cutting that exact tree down this last summer.) So when I brought up making bird feeders to Justin he wasn't overly excited. He said that we would just get more squirrels. For one reason or another he still approved and away we went.

It was a craft that I remembered doing when I was much younger and going to church activities with my grandmother. Around Christmas time the whole church would get together and make ornaments and cookies. We would sing and eat good food. It was wonderful and the memories have lasted. Our church that we belong to now does the same thing. Just another reason that I love it so much!

It's an easy craft to do.

Undoubtedly messy.

But fun to do!

And really..., it's fun to get your hands messy.

I hope that when the girls look back on their childhood that they will remember the times like this that we spent together. From this particular moment together I'll remember how Jasmine and Kiliegh licked the peanut butter off of the butter knife even after they spread it on the pine cones with the seeds still stuck to it... yuck!

Closing One Door and Opening Another

Over the last few weeks Justin and I have been talking about me getting back on an antidepressant. Pristiq to be exact. It is the only antidepressant that I have ever used and actually found relief in.

The only problem is that I would have to stop nursing.

I don't want to stop. I'm not ready and truthfully, I don't think that Vada is ready either.

I feel like a failure right now.

I had a plan and this was not part of that plan!

I was going to nurse Vada until she weaned herself off or until after her heart surgery/recovery. What ever came first.

I should be able to look at all that I have and take comfort in it. I do know what I have, so why am I so down? Why cant I bring myself back out of this slump that I am in?

It's like I'm on the outside looking in. I know that the person I am right now is not the person that I use to be and I want to get that person back. What makes the decision even harder is that I know that in three days from starting the medication again I will be that person. I know that with in hours of starting it I will begin to feel better because believe it or not, for me, it works that way.

The me standing on the outside knows that I have an outstanding life and can tell the me that I am right now about all of my many blessings and accomplishments. But the me that I am right now sees only my failures and mistakes.

I feel ungrateful for allowing myself to have become so low. Lazy for not getting more done or having more energy for Justin and the girls. I wonder often, what I must look like to them, from their perspective. Or worse what I must look like to Justin's parents. Do they pity their son's choice for a wife? Do they think of me as ungrateful and lazy?

There is not too much that brings a smile to my face anymore. There's not too much that makes me all warm inside, except Vada, which may sound badly because I have two other daughters and my husband. Right now, however, its just the truth.

If it weren't for Vada I would be fearful of myself because I feel like the only thing that I am doing right is taking care of her and sometimes I even question that.

I feel like a pathetic excuse of a wife to Justin for many reasons and I feel like I am draining his life from him. He calls everyday on his way home from work to see how I am doing and how the girls are behaving and it is always the same thing. I am always overwhelmed and even angry with at least one of the girls. One daughter is being left out because the other cant seem to behave and I have no patience for anything or anyone anymore so its like one giant spiral...,downwards..., every single day.

I feel like my depression is causing the daughter who acts out so strongly to act out. I feel like the daughter that is quick to tear up and that is so shy is that way because I am always arguing with her sister and am making no time for her. Over all, I feel like I am destroying my children right along with my husband.

So the choice should be easy. I should stop being selfish and get back on the medication. Besides, I deserve to feel good about my life too..., right?

Justin says that I would be closing one door (nursing Vada) and opening another (not being depressed and being free to do more because I am not nursing). It's a nice way to look at the situation, but the "big baby" in me comes out around this time in our discussions and I cry and say how unfair this all is. Why should I have to choose? Why cant I just feel good inside like "everyone" else does and still be able to nurse my baby.

Crying about things doesn't help anymore. It is what it is. I just don't know what to do. Well, I know what I should do for Justin and the girls I should get back on an anti depressant so they can have their wife and mom back and I should let go of the nursing. I just hate this all so much! I just want to be "normal"..., whatever that is.

Friday, December 10, 2010

Wednesday, December 8, 2010

An Overwhelming Too Long Day

I am going to keep this one as short as I can. I am so tired and I vowed to stay off of the computer tomorrow, so I want to get this posted tonight.

Last night was a very long night. It was the second night that Vada was kept from sleep because of her seizures and I was right there with her. Needless to say, I am t-i-r-e-d. So tired that I feel sick! Sleep couldn't come soon enough for me..., i'm just waiting on Vada. She however, feel asleep on the way home from Peoria, so, it may be awhile.

Vada and I left the house this morning at 9:45 A.M and didnt return home until 7 P.M. Our first stop in Peoria was the cardiologists office. She had an ECHO and an EKG done today. Dr. Bramlett said that the structure of Vada's heart has been "changed" because of the stenosis and that it is making it difficult to determine if the holes in her heart are actually larger, or if they just look that way. Either way, the holes look larger than they once were. If that's the case then we do need to do surgery and soon. He said to be for sure we need to do a sedated ECHO on Vada heart and he wants to do that as soon as possible. That way nothing is missed, hopefully. I should be receiving a call with the set appointment tomorrow and its suppose to be scheduled before Christmas.

Vada is not showing any signs of heart failure, so he is pretty confident that she is doing "just fine". He did mention that he wants to meet with the whole "team" of cardiologist after the sedated ECHO is finished and get everyone's opinion.

Over the past couple of months we have been told one thing or another from each and every cardiologist that we have seen. Each cardiologist seems to have a different opinion on how Vada's heart condition should be treated. Hopefully once they are all together they'll be able to agree on whats right for Vada.

After finishing up with the Cardiologist we hopped into the elevators and went up one floor to the neurologists office. We waited in the waiting room fir two hours, which is what happens when your "worked into the schedule", so I am not complaining. Once Vada and I were put into a room and Dr. Jennings came in we had his full attention and I am grateful for that too.

Dr. Jennings and I corresponded throughout all of yesterday through emails. I sent him the newest videos of what I thought was Vada having more seizures and we discussed what our plan was. So when we met today we were already on the same page.

Vada's seizures look different than they once did for several reasons. The main being she has gained a lot of weight from the ACTH and her weight is actually weighing her body down, making the movements seem "different". Also, she is on a anticonvulsant (Keppra) and that may change the way the seizures effect her body reacts to whats going on in her brain. So the seizures may present themselves differently.

As of this moment I am giving Vada full dose injections of ACTH. It should only be a couple of days until we recieve the new medication Vigabatrin (Sabril). It will be delivered directly to our house, just like the ACTH was. Dr. Jennings seems to think that it should be here by Friday. Monday at the latest. So, for now, to control Vada's seizures we'll use the ACTH. Luckily, I have enough on hand. Were using the starting dose because I have already gave her one injection at half of the original starting dose and it didn't seem to do any damage against this round of seizures. The ACTH defiantly give our little cashew a boost! Either it gives her energy and strength or it wipes out those seizures and lets her function... probably both! Either way she was in a good mood. Rolling around and in the army crawl position again. Its nice to see. I hope that this new drug does the job. Well be going back to see Dr. Jennings next Thursday for a check up to see how shes doing on this new prescription.

So..., I think that I have basically covered everything. I am too tired to go back through and check... so, hopefully its all here. :P

I am also too tired to check my spelling, so, sorry.

Night everyone!

Tuesday, December 7, 2010

The Rules of the Game

While Jasmine and I were playing cards Vada rolled over and asked to be included. We try to inclued her in everything that we do so I scooped her up and we started to explains the rules of Phase 10.
Needless to say..., she didn't care about the rules. She had already decided that she knew how to play the game and she was going to do it her way.

Truthfully, she was quite good. She decided that I shouldn't have any green cards..., so she removed them all.

There was only one, but that's a minor detail. She is still a genius in my eyes!

Off the Fence

Its been around three weeks since Vada has been off of ACTH.

On the second day of not having an injections I saw "something". Luckily, Justin was right there next to me.

It was a very surreal moment for us both. I cant speak for Justin but I immediately tasted bile in my mouth. I knew what we saw the moment I saw it, but I didn't want to admit it. Facing fears, let alone one of my biggest fears was not something that I wanted to do that day.

I wasn't ready to say the word "seizures" let alone admit that my beautiful baby girl was having them again.
I wasn't ready to face the seizures. So, I began grasping for anything and everything that it could be besides seizures.

The type of seizures that Vada has (West syndrome also known as Infantile Spasms) can be difficult to diagnose because the movements from the seizures tend to look like the movements caused by Acid reflux or GERD. Even though the chance that it was Acid Reflux or GERD for Vada was slim to none, I had to rule it out before I was willing to start yet another risky medication.

Besides, if I hadnt ruled out all of the other possibilities then I would always wonder if I had made the right choice in starting this new medication. I guess, really that I just needed to hear that it wasn't GERD, even though in my heart I knew. I guess, it was just hopeful thinking.

About a week ago, I told Justin that I thought that originally we had seen Vada having seizures but that I thought that they were presenting themselves because she had a fever at the time.

More wishful thinking on my part.

These last couple of days have been full of odd movements and Vada's "suffering" has finally become apparent to me. I am no longer ""on the fence", I wont deny the seizures any longer.

They are back, they are stronger than before (in ways) and they are causing Vada to regress in areas that she was excelling in before.

Seizures are scary. Its something no one will fully understand until they themselves go through it, or have watched a loved one suffer from them. The damage caused by one single seizure can be devastatingly irreversible. Which makes them that much more frightening to deal with.

Treatment to stop the kind of seizures that Vada has is next to none. I am just as overwhelmed by the possible side effects from these medications as I am knowing that she is having seizures but allowing her to continue on having seizures is not an option I am willing to take.

Last night I spoke with Vada's neurologist and asked him if I could give her another injection of ACTH. The last time I gave her a single dose injection what we thought to be seizures, were stopped. Unfortunately, this injection did not do the same. At least not that I can tell.

I also emailed him some video's that I recorded of what I thought was Vada having seizures. He agreed that she was having cluster seizures again.

Tomorrow Vada had an appointment with her cardiologist. Which is still scheduled. After wards however, she will be seeing her neurologist and we will be filling out all of the paper work to get the approval for the new medication. I should have a good idea of what is to be expected by the end of tomorrow.

She is a strong girl. I cant believe how strong! Please continue to keep her in your prayers and I will continue to update as I find out what we will be doing.

Thank you.

Friday, December 3, 2010


Tonight Jasmine earned her orange belt in Karate. This was her second promotion since beginning Karate. I unfortunately missed her first promotion. However, I was here tonight and I was so proud of her determination and the skills that she has already acquired.

Jasmine and her peers were worked pretty hard for about forty minutes. They had to demonstrate everything that they had been taught so far and they had to keep up with each other (for the most part). It was very impressive to see all of the kids doing the steps in a pretty close form of unison.

Jasmine goes to Karate twice a week. Her next promotion will be from an orange belt to a yellow one. She has worn her orange belt once (tonight) and she is already talking about not being able to wait until she has her yellow one.

I am so happy that she is in an activity that she enjoys and something that teaches about self respect, control and respect for others. I really, really like that she choose Karate and I am really proud of her accomplishments already. I cant wait to see what she accomplishes and learns with each new level.