A Few of My Favorite "Things" - January Edition

I don't claim to be good at this whole blogging thing. I do however enjoy writing. To me it's therapeutic. I write for me and because I have something to say, even if what I have to say turns out to be nothing of importance.

I don't blog for popularity, although I always get a big smile when I see that someone has added themselves to my "following along" list. So if your not already one of the ten people who are on that list, take a second and add yourself.

I know that a lot of people blog to make a little extra money or making a little extra is just that, a bonus to their blogging experience. I, however, am not that good or even devoted to the idea. So I have come up with an idea that I think is fun..., at least for me. Ive made a few purchases this month that I really enjoy..., so, i'm going to share them with everyone. Well, ill announce the monthly joys that I have found and let you know where you can get yours. (If your interested.)

First on the list is Vada's new shoes. I bought her's through Amazon, which is where I do a lot of my online shopping. I have attached the link to the Robeez website. There you can look at all of their adorable shoes.
Robeez Mini Shoez Razzle Dazzle - hot pink

Next, also a baby purchase, Baby Legs. Leggings for your little one.I purchased Vada's from an amazing company called the Polkadot Platypus. I love, love, love this store. The products at the Platypus are amazing. Really, you should go check them out.

My most important purchase that I have made this month (besides the groceries) was made through the R-Word Store. This store is devoted to providing awareness products to help spread the word. The word is 'retard(ed)' and it is a word that is commonly thrown around without acknowledgment of the true meaning or how it may affect others.
I have one last thing to add to this months fav's. It's not something that I have recently discovered, just something that you may not know about. However, if your as much of a fan of Chai's then you probably already do know of this little secret.

My Starbucks order usually sounds something like this... Venti, soy (or skim),sugar free vanilla chai latte. It's so yum! My drink is close to five dollars each time I order it. Here's the secret...Starbucks uses Tazo brand Chai concentrate. Which just so happens to be sold at Target and at Wal-Mart. For less than one Venti at Starbucks you can get about 6 (if not more) coffee cups full of this yummy goodness all while wearing your p.j.'s and in the comfort of your own home.
When I first started buying my own concentrate I used the sugar free syrup from Target, now I have found a couple of new items that make my Chai even better. First, I use the Organic Chai now, verses the original and instead the syrup, I use International Delights Skinny Vanilla Latte creamer. Its delicious!

So, that's it. These are a few of my favorite things.

Life Is NOT Disposable

Asking me if I would knowingly have another child who has Down syndrome is like a double edged sword. I have a daughter who has down syndrome and I wouldn't change her having Ds because that is a part of her and I love her. I would never and could ever have an abortion. I know myself and I know I would never forgive myself. Plus, that is a choice that I believe is truly, not mine. Maybe if the question was asked differently, then I could answer it more appropriately.

I am hoping that my writing abilities are at the very least semi comprehensible, that way I am able to write this in an understanding way...

Justin and I have a possibility that together we may always create a child who has Ds. We are not certain if it is a fact yet and are in the process of having genetic testing done to find the answers we need. Due to a recent flaw in my method of birth control we have been forced to make a decision and unfortunately, we cant make a educated choice with out knowing if Justin is a carrying parent for the Trisomy21 gene.

I tried to explain to my OBGYN when I was in her office on Friday about Translocation Trisomy21 (which is the type that little V has). Dr. P. didn't get it at first. Her suggestion was this...,

Dr. P. "You know what you could do..?" She said as she was looking at Vada who was sitting ever so sweetly in her car seat. Her big almond eyes staring towards the Doctors like she could understand what she was saying. "You could get an amnio and if the fetus had Trisomy21 then you could just abort until you have one that doesn't have it." I instantly felt my face warm and I wanted to get up and leave. Is it wrong for me to want a good doctor? One that believes in God. She wouldn't have recite scripture to me, in fact that might creep me out. All I want is one that believes life is at conception and is created by God and has a purpose. Am I naive? I liked this Doctor. I haven't had much time with her, but up until this point she did her job for me just fine. Now, though, I don't know if I can go back, but I don't really want to go looking for yet another new doctor.

I took a deep breath (something I am getting really good at doing), and then I explained that the 1 in 4 chance was Justin's chance on being a carrying parent and not an actual ratio for babies that we could "produce" who have Ds. Then, I did it. I added in what I truly felt and while I did it nicely and held my composure, I didn't sugar coat it. I couldn't, Vada was right there and she may not have understood what it was that I was saying, but I was saying it for her. I told the doctor that I knew Vada had Ds before she was born and that the knowledge didn't matter. I love her no matter what. I told the her that for me and for my personal believes, (to me), abortion was murder and something I couldn't live with. After calmly stating my case she shook her head and said "Okay, then you wouldn't really want to do that then." She accepted what I said and respected it to some degree, there really wasn't much of a response other than that.

I'm wondering what I should do. I'm feeling a trend with doctors lately and I am wondering if something is wrong with me. I complain or have complained about doctors a lot since the beginning of my pregnancy. Are my standards too high? Is there no such thing as a doctor with real morals and christian values anymore? Am I wrong for wanting those things? Should I find a new doctor? Or do I just agree to disagree? After all, isn't it wrong to not accept her for her differences? She did hear me, acknowledge me and then drop the subject once I told her my believes. Is that good enough? Its something that I am praying about.

Why is life so disposable to people? I don't understand how anyone could throw that option around so easily and actually live with themselves. I'm sorry, I just cant. No, I wont.

What about those poor women and even girls who are offered this option but are never told the other side? Who is going to help them when they are hurting because of their choice? Or worse, what about the ones who get pregnant over and over and use abortion as a means of birth control. It makes me sick. That visit made me sick and has left a fowl taste in my mouth and a longing to never let Vada go. The realization is setting in that there are people in this world who would not have made the same choice that I made in keeping Vada and those who look at Vada now, in her beautiful baby flesh and don't see her as a real person who has a place in this world and who carries an over abundance of value. Its sad.

So, back to the original question..., Would I knowingly have another child who has Ds? Yes and no. If Justin is a carrying parent then we have decided that he will probably have a hysterectomy since it is a less invasive procedure for him. That decision is not final but it will be something that we will look further into if needed. It's hard to give a definite answer. I love children and I would someday like to have a son or another daughter, but i am not in a place to really begin planning for another addition in our family. With that being said, I would undoubtedly adopt a child who has Ds or even another disability and I would love him or her as my own if we did decide to not have any more biological children.

Short Stuff

Yesterday I took Vada in to see her Pediatric doctor, Dr. H. It was just a routine follow up from her being in the hospital a couple of weeks ago. No biggie.

Like any other visit she was weighed and measured. She weighed 18lbs-12oz's and she was approximately 25" long. It varies between the nurse who is measuring her. I get her at 25", but that's just me.

This is a typical growth chart. Most medical professionals use one that is comparable to this. I've marked with stars where Vada's weight and lengths fit in on this chart, at birth and as of yesterday.

If your child has Down syndrome then a chart specifically for people who have Down syndrome should be used. (I bring one with me to appointments because not all offices carry them.) There are noted differences between the growth of children with and without Down syndrome. Here is a chart for the weight of a child who has Ds.

I have made three marks. One for Vada's birth, one from September of 2010 when she was approximately 6-1/2 months old, and one from yesterday. Keep in mind that during her heaviest moment she was on a very toxic steroid for her seizures and is just now loosing that weight. Vada is currently in the 90% for her weight.

This is the length chart for a child who has Down syndrome. I marked the same dates on this one as I did on the weight chart. Currently, Vada is below the 10% for her length/height.

Dr. H. brought it to my attention that Vada had stopped growing. It wasn't until I pulled up her past measurements and compared them with yesterdays that I noticed that her height had not changed in months. I knew she was smaller but with everything else going on I hadn't paid much attention. I had always noticed how her pant legs and shirt sleeves had to be rolled up because the were too long, but I had always assumed it was because she had to be in clothes too large for her body length due to her gaining while being on the steroids. Her not growing had never occurred to me.

I had brought in a slip that was given to me from the last hospital stay in Peoria. It was a script to have lab work done for testing her CBC. I asked Dr. H if they could do it there in his office or if I should take her to the hospital. He said to go to the lab at the hospital because he wanted some extra labs done. He wanted to test her thyroid.

When Dr. H brought up her possibly having issues with her thyroid I didn't believe him. Dr. H is a nice enough man, but he has rubbed me the wrong way on a couple of occasions and I have been debating on finding another Pediatric doctor for V. Plus, I thought with all of the labs and full CBC's that have been done that surly a Thyroid issue would have already come up, if it were in fact an issue to begin with. I know on one occasion that her thyroid was tested and it came back normal and even with the doubt I had in Dr. H, I figured it wouldn't hurt to just see.

Maybe I should have just let go of the past and had a little faith in the him, because he was right. Vada has Hypothyroidism and will need to be put on hormone replacements. Dr. H is calling Peoria on Monday to okay the medications with the cardiologist and the neurologist and then he will be calling me with the new prescription.

It does not surprise me that V has hypothyroidism. I do too. It is something that she will end up being on medication for the rest of her life. I personally have been on medication to regulate my thyroid for almost 8 years now. For me its means routine blood work and some minor adjustments to my medications.

When my thyroid is "off" I can tell. I am more tired than usual, my weight goes up and it does so very quickly. I also loose my hair, my skin get very dry and I have head aches quite a bit. I'm wondering if this may be some of why Vada sleeps so oddly. Symptoms are different with infants than they are with adults and so are the side effects. Its so hard to tell when there's so many medical issues and prescriptions. Either way, I am hopeful that once she is on a hormone therapy her sleeping will balance out.

A lot of people tend to ask me when Vada has a new issue arise if it is because of her having Down syndrome. The truth is, in most cases, I don't think anyone knows for sure. Heart issues, stomach issues (like Duodenal Atresia), seizures and thyroid issue are common trait's in people who have Ds, so this too may be linked to her having it as well. It could also be because I have it, it's hereditary; or both combined.

Hello Nurse

This is Cathy. She has been Vada's visiting nurse for around six months now. When she first started working with Vada she came every day. Eventually, her visits were bumped down to three times a week and now we see her only once a month.

There was a small mis-communication during our first visit together which made me on edge and nervous that having her come would not work out. However, we spoke about the communication issue and resolved it. I am glad that I was able to talked to her as freely about my concerns as I did because she has been nothing more than a blessing.

I often looked forward to her visits. She was not only a nurse to Vada she was a source of sanity to me. For awhile she was the only outside contact that I had with the world. Luckily, for me, she turned out to be great company.

I wanted to mention her because I feel that we all have angels around us, ones that have been hand picked by God to come into our lives and make a difference. Cathy is one of Vada's angels, and in many ways, she is one of mine as well.

Sweets for My Sweet

I have a "sweet tooth". I know, I know its a very cliche thing to say, but I cant help it. Almost every holiday holds a special candy that I get excited about because you can only get it during that time of year and Valentines is one of my favorites. I get to pick up at least three different candies that I love, love, love! Valentines day has Braches Cinnamon Jelly Hearts, then there are Wonka Gobstopper Heart Breakers and Sweetart Hearts. Talk about tooth decay!

Apparently Vada is following my lead, so I may need to rethink my candy eating habits.



I plan on considering a change in my sweet treats after Easter because that's when Starburst Tropical Jelly Beans, SweeTarts Chicks - Ducks - Bunnies, and SweeTarts Gummy Bunnies come out. Yum!

A Sense of Home

Kiliegh has been struggling in school. I cant help but think that we started her too young. Now, I am considering holding her back a year. Kiliegh had issues in Kindergarten and even in first grade as well as this year. I work with my children. I read with them and we do flash cards. In the summer I get them the Bridge workbooks and we do those together. But Kiliegh has always ended up being behind each year. Her grades are decent but she really has to work very hard at them. She takes a much longer time at comprehending things and homework is always a task. She was in reading recovery each year, including this one. I feel like there are a few contributing factors that go above and beyond her being a preemie. (She was born at 32 weeks gestation)

The first one sounds a bit rude, but the truth is Kiliegh can be a bit lazy, making it hard to tell if she is struggling or just not wanting to do her work. Her bio dad thinks she has ADD and wants me to take her to the doctors. However, he bribed her for thee weeks with a video game and a skate party and she did wonderfully, (go figure!). I told him that bribing her was a horrible idea on his part and explained that all it did was teach her that if she misbehaved and then behaved like she is suppose to, she would in return get stuff. I also told him that the simple fact that she did so well for those three weeks proves that she can control herself. Which would not be the case with ADD. Not that im an expert in that area, but it makes sense to me.

I called the school consular on Monday. She happen to not be in, so I left a message and I am awaiting a call from her. I want them to test her and see if she is where she needs to be compared to other students in her grade and age range. Since this has been an issue to some extent each year I think it would be valuable to the situation if we could see where she "sits" intellectually compared to other students.

She is getting to the age where holding her back is still okay, but it also has potential to really effect her negatively. Again, that's just my opinion, but I feel that if we wait much longer on holding her back, if that;s in fact what we choose to do, then it may be an even harder adjustment for her.

Another contributing factor to Kiliegh's struggles, I think, have to do with our visitation schedule between her bio and I. We have always been pretty civil. Which means that we share Kiliegh nicely. The fact that I can say that we share her, I think is a problem. It's good to get along, especially when children are involved. But, she is a little person. She needs structure and a sense of belonging, not ciaos and a whole bunch of shuffling back and forth.

Right now, our visitation is three days on, three days off. Which looks something like this....

It's not that bad of an arrangement. I don't like going three days without seeing Kiliegh, let alone any additional time lengths. However, it does get confusing. I write it down on my calendar at home and I program it into my phone monthly, but I can never remember which day she is coming and which she is leaving on. I always have to count: Monday she came home, home, home, Thursday she goes back. Most times I have to ask "What day is it today?" or "What day did she come home?" It's hard to adjust to and while it is a normality in our home, we never really have adjusted.

I can only imagine how hard it is for her to adjust. She doesn't really have to worry about when she is coming and going, we just tell her. What she has to remember is school work, different chores, rules, bed time routines and even different friends and families. Below is Kiliegh and Jasmine's visitation and activity schedule combined.

Are you confused yet? This is just the older girls schedule. If you combine Justin's odd work schedule and Vada's doctors, physical therapy and nurse appointments as well as her hospital trips then the calendar fills up even more!

In my opinion, if it is hard for me to keep track of (which it is), how is it effecting Kiliegh? She is more "up rooted" than Jasmine. Jasmine is basically here all of the time (different dad's, different situation). Therefore, I came up with a solution that I don't particularly care for, but that I think will benefit Kiliegh, and that's what counts. Visitations with Kiliegh is a 50/50 deal. We did three days on and three days off because originally when her bio was single he told Justin and I that he couldn't handle more than three days, which was fine, because I didn't want to go any longer without seeing her. However, I now think that it would be best for Kiliegh to remain in one home during the whole school week. I told her bio that I wanted to do a Sunday to Sunday visitation schedule. That way Kiliegh only needs to focus on one house, one set of rules, one bedtime and one set of parents in a particular week. Truthfully, I don't think that she ever had time to just "be at home". She would come to one house, start to adjust to the settings and then have to go back. I really think that this will help. I think that it's what she needed from the beginning of her starting school.

This year is half way over. I am hoping to see some improvements by the end of the year. I am hoping that this will be enough time for her to adjust to see if this is what the major issue is. If there is no improvements then I think she should probably be held back and repeat second grade. For now, we'll just focus on this transition and deal with that when it gets closer.

Goal's

As of lately I have been setting little goals for myself. Such as using my cookbooks a couple of times each week and taking on at least one household task each day. Yesterday, I made the goal to clean our up stairs floors. So I swept, vacuumed, mopped and even steam cleaned the carpets. Today, my goal was to do more laundry, which I have procrastinated on and I am still avoiding doing as I write this.

Ive been doing a pretty good job at the cook book goal. These two are currently my favorite books.

They are from Taste of Home. Both of them are basically the same book, they just have different recipes in them. The cool thing about them is that they give you a weeks worth of meals and then the shopping list for that week. We very rarely eat red meat so I don't follow the books as it was intended to be followed but last week we had Chicken Wellington, Spinach Turkey Burgers, and Southwestern Skillet Burgers.

Last week was my second week and I really got into the whole thing. I have wanted to do meal planning for a long time, I just haven't been disciplined enough to follow through on it. Last week was so nice to have it all figured out before hand. I just looked at my list in the morning each day and if I needed to take something out of the freezer I did so then. I didn't have to think about it again until 4 PM came around. (We eat early sometimes. The earliest we eat is on Wednesday at 4PM and the latest is on Mondays at 6 PM.)

Last night I sat down and did the same thing that Ive done the past two weeks, only this time I tried to plan a week of meals needing the least amount of groceries. So far, my grocery list has seven items on it and that's including a gallon of milk and a loaf of bread. I am actually pretty proud of that. I never knew I was this domestic, but to me, its kind of fun. I really like cooking for my family. I like making new meals and hearing how much they enjoyed them.

This week our menu has four things from my Taste of Home books. Monday we'll be having BBQ Jack Chicken Breasts. On Tuesday we'll be having Chicken Shepherds pie. On Wednesday we'll be having "Tex-Mex" Turkey Burgers and on Thursday, because we don have red meat much I threw this in for Justin..., homemade Salisbury Steak. The recipe calls for noodles but im using mashed potatoes instead. It just sounds better. On Friday I am taking it super easy and using up the Hamburger Helper that is in our cupboards. The weekends are kind of free-for-all's in our family. So I don't meal plan for those days.

Another goal I have is to take time doing something for myself each day. Right now I am obviously blogging. Last night I read a little. I went to the Chiropractor sometime last week and I am going again this Monday. I am also making myself take daily vitamins and I have not one, but three exercise videos. My goal with those is that I do one at least once a week. I don't know how you mom's do it everyday with multiple children, but i'll have to work into that over time. (I used to run a few miles each night before I got pregnant, but then that was when Justin was working a different job and he was home every night.)

Usually, I am pretty scatterbrained. I am hoping by setting goals to be able to mellow out a bit and actually accomplish something more than going in circles!

A Milestone

It's been so fun watching Vada grow and progress over the last month, even more so now that we know that she is not having seizures. The swelling from the cushings has gone down considerably and it seems as if all of the ACTH must out of her system because she is just so alive.

Yesterday, she was laying on her belly and made crawling movements towards her purple dinosaur rattle and she actually made two small movements forward. I tried to record her doing it again, but I was unsuccessful. I swear she knows the moment I push {record} because as soon as I do, she stops what shes doing.

I've been saying this for awhile now, but I know that any day she will be all over the place, and today was just another step in that direction!

I remember when I was pregnant, I was reading books and surfing the web for information on Down syndrome everyday. Everything that I read told me that there would be developmental delays. The first time I read that I turned to Justin and said "Vada will probably be our last baby..., so, she'll just be our baby for a little longer..., and that's okay." I meant it when I said it then and I still feel that way now. I am proud of who Vada is and when she does reach a certain milestone no matter how small or how delayed, I celebrate it!

Today, Vada sat on her own! Well, she had a little help from her boppy, but it was the first time that she has ever done this. She stayed up for minutes, not seconds and when she began to fall to one side or the other you could see her using all of her muscles to pull herself back up.



When I got down to take her picture she gave me the sweetest smile. It may have been a coincidence, but I think she knew she was doing something big!

Sleep Wont Come to These Tired Eyes

The past couple of weeks I feel as if I have been robbed of sleep and I am in search of any and all advice.I can not remember the last time I slept through the night but im pretty for sure it was over five months ago.

Vada typically sleeps quite a bit, or she will if you let her. I think that her sleeping habits seem more like ones that you would see in a new born baby verses a ten month old. She used to be on a great sleeing schedule. In fact, before the seizures started she was sleeping through the night and had been for some time. Since the seizures and especially since the ACTH she has been up pretty much on the hour every hour. Usually, I am too tired to answer when Justin asks me how many times she got up during a particular night. Typically I just reply with an "I don't know the number, I just know that it was too much!"

These past two nights I have paid attention to how often or at least how many times Vada is waking up. Last night she went to sleep at 9:30 PM and got back up at 11 PM. She stayed up until 12:30 AM then from 12:30 AM until 4 AM she was up six times! At 4 AM I was exhausted, and sore (my neck and back are killing me from all of the odd ways I am trying to hold her to help her sleep, so in return I can too). So,at 4 AM I came up to Vada and Kiliegh's room. I laid Vada in her crib and said "night night" and I crawled into Kiliegh's bed (Kiliegh is at her dad's, so I had her bed to myself). I didn't really get to go to sleep because Vada never really went to sleep herself. She fussed a little and stirred then moved all around. I stayed in Kiliegh's bed and in a soothing voice I would "shush" her and tell her "night, night" some more. This was the first time, ever, that I have done this. Vada doesn't cry herself to sleep. When she does cry I usually pick her up and sooth her. Yes, I wait for a few seconds (yes seconds) before picking her up, just in case it is a "false alarm cry" and she is able to put herself back to sleep.

Vada may have her days and nights flopped. I have been working extremely hard on keeping her up during the day because of this and surprisingly I have been doing a pretty good job at it. However, it almost seems to not make a difference on how much she doesn't sleep during the day, she still doesn't wont sleep during the night.

I think that I will start to log every moment. When she wakes up. When she goes down for a nap. How long the nap was and so forth. Although im not quite for sure what I expect to learn from this or how I would use the information in the first place. I got the idea from Justin's mom, she said that his sister did it but I forgot why, so I guess that would be a good question to ask the next time I see her. I think a friend of mine is doing something similar as well. Only she is doing it to "train" her new born into having good sleeping patterns before the bad ones settle in. I may be past that point..., maybe not?

The intention for this post was not to vent or to complain. It is a cry for help, suggestions, advice and opinions (yes, opinions). If you have any of the above then I'd love to hear it. I may not use the advice you give me, but I am open to hear/read anything (even if its to tell me im a wuss and V is a spoiled baby).

Keep in mind that Vada is on a few medications that as a side effect may or may not be causing her to be more sleepy after taking them (three different times throughout the day). She also has the heart issue and letting her cry out for any prolonged amount of time probably is not in her best interest, nor is it something that I personally could stand to do.

Here's one more idea. My Chiropractor brought up doing acupuncture on Vada today. She said that we could "reset" her internal time clock. She said that she does it for those going out of the country and then when they come back. Now there's a thought..., lets hear yours!

One Down and One to Go

Monday morning I took Vada to her GI specialist. There is really not a whole lot to say for the visit, other than we have begun doing more testing, which is a good thing.

Vada's first test was done this morning. It was a Barium Swallow test. Over all the test went well. Actually, there was really nothing to it. We were all a bit nervous at first when considering how they were going to give the barium, considering Vada wont take a bottle or a pacifier. I explained that I could give her the barium in the same way that I give her her medication (with a dropper) and everyone was open to my suggestion. I ended up using an nose dropper because that was all that the hospital had, but it worked out and Vada took the solution with ease.

The pathologist was pleased with in the first two swallows making the test a quick one. He said that there was nothing constricting her pathway and no signs of fluid going down incorrectly. He suggested that her not eating solids may be a behavioral "thing", and that she may have issues with textures. I agree with that, she has not shown too much interest in solids since we attempted giving the Topamax sprinkles to her in her food. Talk about textures! To deal with the eating I'm in the process of having a speech therapist come to our house to first evaluate Vada and then to work with her.

The concern with Vada possibly having Acid Reflux will hopefully be resolved soon. She has another test scheduled in the beginning of February. That test will be done in our hospital. It will be a 24 hour observation test so Vada and I will be camping out in a hospital again. Luckily, we'll be in town.

A Real Disaster

This is a picture of Vada when she had just come home from the hospital. The frame was a gift that I had received at one of my baby showers. Its pewter which makes the frame itself quite heavy. I wanted to use the frame but I didn't really have a place to put it so I put it on top of Vada's armoire and never gave it a second thought.


After her nap this morning Vada finally woke up (with out "snoozing"), in a very playful mood. She was making all sorts of fun baby noises. She kept giggling at Jasmine and I for no other reason than just being happy. It was so much fun hearing and seeing her laugh in such a way that I decided to try to record her doing all of these fun things.

I was in a hurry because I wasn't for sure how long she would continue to be playful before wanting out of her bed so I reached up to the top of the armoire to place the camera. While doing so I knocked the frame off ..., which fell into the crib and landed on the mattress next to her head! It all seemed to have happened in slow motion. I was still reaching to place the camera as I was watching the frame almost pierce her head. It gave me the most disgusting feeling.


Instantly, I felt ill and it took only second before I couldn't see clearly due to the tears that had begun to cover my eyes. The realization of what could have happened was instant. If the frame would have hit her it would have caused some serious damage..., or worse. Luckily, she wasn't hurt in even the slightest bit and I have learned my lesson. Everything that was up there has since been removed.

After Vada checked to make sure that her ears were still attached to her head...,

she rolled over and as politely as a 10 month old can ask, asked to come out of her crib.

All jokes aside, I actually grabbed her right away. These pictures were from when we first came into the room and before I had considered trying to record her on camera. The moment that the frame hit the mattress I was holding her and thanking God that he didn't let that frame hit her. It was a very quick ordeal, but it could have been a real disaster just as quickly.

Snoozer

I have been laying Vada in her crib over the past week for both her nap times and for her bed time. It has been a struggle, to say the least. Nap times are much easier than dealing with her at bed time. She goes down easy enough, but in the evenings she keeps waking up. Since I am trying to have her sleep in her crib verses with us I have to stay all of the way awake while nursing her. I used to just lay down with her on my side and we would drift off together in our bed. I think also that she is teething. Which is something I have been throwing out there as a possibility for quite some time now, but I do believe to be true. Her baby gums are starting to really swell at the bottom level and you can tell that those teeth are there, just not cutting through yet. I have given baby Tylenol to her and sometimes it seems to help, but she will still wake up either way, just not as often. However, I don't want to give it to her every night because I am still uncertain that she needs it.

Anyway, that is besides the point...,

Today, I laid Vada down for her nap. When I laid her down she was asleep. About ten minutes into the nap I hear her fish tank going. I have it on a water setting, so it sounds like waves and such. There was no school today so Jasmine was wandering around and I asked her if she had turned on the tank. She said that she hadn't, so I got up to go investigate.

When I went into Vada's room she was laying down and asleep. I thought it was odd but I believed Jasmine so I brushed it off as a fluke.



It takes something like ten to fifteen minutes before the fish tank turns off on its own and eventually I no longer heard the sound of waves. What I did hear was a grumpy baby make a squeal and then the water turned back on. This time, Jasmine was sitting right next to me. Her and I both looked at each other in amazement and jumped up. I grabbed my camera and we went to Vada's crib side.

This time she was looking at the tank.



A couple of months ago I tried to show Vada how to turn it on. While she was watching I would push the button at the bottom and say "on" and then I would do it again and say "off". After doing that several times I took her had and repeated the motions having her do it.

Today, I thought for sure she had figured it out and was using her tank like we would an alarm clock. The on/off button was like her very own snooze button. However, as I stood there watching and waiting, anticipating on seeing her do this, I saw something a bit different.

Vada likes the tank sounds. It seems to always sooth her. We turn it on when ever she lays down and each time she wakes up. What was happening was Vada was waking up, lifting her head to fuss but bumping the tanks on/off button and turning the sounds off. In return I think it was soothing her (or knocking her out) and she would lay back down until the music stopped. Im thinking that she wasn't intentionally hitting her head to turn it on and that it was just an accident, but it was pretty exciting either way.

Needless to say we moved the tank from the side to the feet of her bed. While it was helping, I don't want her banging her head on it either way.

It's Good to be Wrong

Over the past several days Vada has had questionable movements again. It sounds weird to say that, let alone put into words, but when you have dealt with seizures maybe it gives you a whole new perspective on the way your child moves, acts and behaves. The movements have been comparable to what we were seeing when she was having seizures.

I have been corresponding through emails and over the phone with Vada's neurologist throughout this time and over all he was on the same page. I had sent him several emailed videos and with each one he commented on how it looked as if she were having a different kind of seizure(other than the Infantile Spasms).

The last time I sent him video's he called with in a few hours offering me two options. The first choice was to start her on the Sabril right away, (a medication that I have a months worth of on hand). The second option was to do an VEEG also known as a Video EEG Monitoring Test. I jumped at that idea. The last VEEG was one that lasted for four straight days. It was done at the beginning of Vada's seizures, nearly four months ago.

While I still believe firmly in not treating the EEG but treating the child/symptoms, I needed to see what was going on. My mind wasn't made up and I was confused at what I was seeing. By having this VEEG I was hoping for some direction. If the video showed her to be having seizures, then we would treat her for them, but I didn't want to start yet another semi-risky medication for no reason if she was not having seizures.

During the initial preparations I was given a button to push and a log sheet (just like last time). Everything that we had been seeing and everything that we had been questioning would be seen on the video as well as on the scan. The doctors would be able to target the "episodes" by the moments on video and from when I pushed the button.

The test went well. Vada had every "episode" that we had previously questioned and not one single movement showed up to be a seizure! This was great news. Overwhelmingly great news. However, I am not one to leave "well enough" alone, (or is it "good enough"...? Ugh..., I need to go back to school!). On Monday I am taking Vada to her GI specialist and requesting that further testing be done.

(This picture was from September 2010 when Vada first started to have seizures. You can see that there are "rest" periods between the "peeks". The rest period's show Vada's normal brain activity. The peeks are what happens when you have what is called hypsarrhythmia. Hypsarrhythmia is something commonly seen with her type of Epilepsy.)

(This picture was from the January 2011 VEEG. No peeks. No hypasarrhythmia!!! The Neurologist said that her brain activity is slower than a typical child, but that slower activity is commonly seen in people who have Down syndrome.)


One new piece of information that we discovered during this last OSF stay was that Vada's has leukopenia. Which means that her White blood count (WBC) is low. Her levels should be over 1000 and right now it is in the low 600's. I'm sure most of you know, but for those who don't, your white blood cells are what helps your body fight off infections. The cause of her low WBC is probably being cause by the Valporic Acid that she is taking to help control the seizures. Since the Valporic Acid is working at maintaining a seizure free Vada we all agree that we would like to attempt to keep her on it. So we have started to give her Levocarnatine, which is known to help raise and maintain the WBC.

Vada will have to have her blood continuously checked to make sure that her levels are where they need to be. If the Levocarnitine does not help then we will have to look at putting Vada on a different Anticonvulsant. For now, were going to keep a positive mind set and pray that the Levocarnitine does the trick!

Sleeping Beauty

When it was time for Jasmine to go to bed she gently laid Vada onto the couch and tucked her back in with the blanket that they were sharing.

My weekend was very nice, but ill admit I spent most of my time watching and waiting...,

and trying to capture something on video to show the doctors.

Seizure's have not only took a hold of Vada, they have taken me too. My life will be forever side tracked with the fear of seeing one, with the fear of the possible damage that the last one may have caused and with the fear of when the next one will occur.

Sometimes, I sit and watch her. Hoping to not see anything, but ready for when I do. Tonight, as I wrote about how blessed I was feeling and how lovely my weekend turned out to be, I also watched.

Tonight I was able to just take in her beauty. For a few brief moments I was able to sit back and watch her sleep soundly..., peacefully and like all babies should.

A Lovely End to an Even Lovelier Weekend

Sometimes, I just want to do nothing. Which seems a bit lazy, considering I cant really go anywhere. You'd think that I would want to be doing something..., but this weekend, I was really looking forward to just hanging out with Vada and trying not to worry about anything. Over all I accomplished just that.

Justin had to work nights on Friday and on Saturday so he slept during the days and then he headed to Chicago this morning for training classes, also for work. (He'll be there all week.) Both Jasmine and Kiliegh were at their bio's, so that left Vada and I.

What did we do?

I already told you.., nothing.

We'll that's not completely true. We stayed in our sweats. We took long bubble baths. We made baby food and baked some delicious Toll house cookies.



Plus, we played and then when we were done with that..., we played some more.

For dinner tonight, one of our good friends brought us some homemade pizza which really helped me on dishes and time and I was able to have more "playing" time with the kiddo's! Plus, it was really good.

Kiliegh and Jasmine came back home tonight about an hour apart from each other. Kiliegh was first. We played a game called Stare Junior and then we played office for a few minutes. Afterward, Kiliegh and Vada got into the bath and they played for awhile.

Kiliegh wanted to make Vada into "Santa" and then proceeded to do the same for herself.


This was Vada's second time taking a bath with Kiliegh and she loved it!


Kiliegh was just getting out of the bath when Jasmine got home and came into the bathroom to say hi. Jasmine is turning into a little "mother hen". She is just blossoming into this wonderful young lady. I am so proud of her and all that she is doing. (We have had some really hard times with her over the past couple of years, but she is just turning into an amazing little person.) I don't mean to sound bias, but well, really..., I think all three of my girls rock!

Anyway, Jasmine took over playing with Vada while I finished up with Kiliegh and then followed right behind me as I took Vada over to the hanging table. Jasmine likes to help dress Vada and lather her with lotion, but as soon as I start to give Vada her medications she steps away. She jokingly says that she doesnt want Vada to get mad at her for letting me give her such horrible stuff. Its more of a joke, but I can tell that Jasmine feels badly that her baby sister has to go through so much. I love how much she loves her. It warms my heart and fills me with even more pride.

After I was finished "torturing" V, I rocked her for a bit to calm her down (she does not like her medication and since I have personally tasted them all, I don't blame her.) then I gave her to Jasmine. Jasmine love to hold her, especially when she is sleepy. They cuddle together very well, and Jasmine rubs her head, which is something V seems to really enjoy.


Thanks to Jasmines help I was able to pick up the mess that I had made over the weekend and prepare for the Physical Therapist who I think (I may have wrote it down wrong) is suppose to be here tomorrow.

Yesterdays plan was to take V into the hospital tomorrow (Monday) morning, however I forgot that Jasmine has an appointment and Karate, plus the PT appointment. I want to keep those and really, there's not whole lot of difference in one day, so were going Tuesday instead.

I try as hard as I can to not disrupt Jasmine and Kilieghs life/regular routine. They get thrown off every now and again, there are things that they miss and things have defiantly changed, but over all I think I am balancing things out pretty well for them. More than anything, I want their experiences and memories of growing up with their sister to be positive memories, not resentful ones, because they missed out.

The night has come to a wonderful end. I have tucked Jasmine and Kiliegh into bed and Vada and I are following shortly behind. I have talked to Justin who made it safely to Chicago, checked into his hotel, played some of his video game and even concurred a whole 16" Chicken Thai Pie from Old Chicago, by himself..., I'm so proud. (Since you couldn't see me while I was writing that, I was rolling my eyes and shaking my head..., I don't know how he does it!) Oh yeah, I even planned out our dinner for tomorrow. Since we are going to be quite busy I wanted to figure out something healthy to make instead of "picking something up". Eating out is nice, sometimes, but I really don't like fast food and I really don't like feeding it to my family. Plus, it just makes me feel good when I cook a meal for them. Especially, if they enjoy it!

This weekend started out nicely and ended up just as well. I'm feeling pretty good with all things considering and I am able to step back and not only know in my mind but feel in my heart that I am blessed beyond any measure. (Sometimes, when my depression really "kicks in" its hard to feel the good in life.)

A Different Kind of Seizure?

Over the past week Justin and I have been noticing new physical movements from Vada. Some of them seem to be typical for her. She seems to enjoy smacking her lips together and for the most part when she does this it seems to be somewhat voluntary. We have also noticed her eyes are doing some rolling and she has displayed some odd head movements. There has been two occasions (that I can remember) where she looked liked she had "jack knifed", once Justin was the one to first notice the movements. I hate feeling like I am the only one dealing with this and seeing this. I am constantly in conversations that make me feel as if the other person thinks that I am over reacting. Maybe I am or maybe I am just defensive but when Justin is right there next to me, witnessing the same thing that I am, I just feel more self assured.

The nights are becoming somewhat of an issue again. If I am remembering correctly I posted something around a month ago in more detail about the nights seeming to be the worst for Vada. I personally think that is because of the distinct difference between napping and going to sleep for the night. Our bodies have eternal clock and it knows the difference between a short nap during the day and going to bed for several hours over the night (at least I think so). As often as I have seen Vada's body movements during the evening, it just makes so much sense to me. However, proving my theory is hard to do.

The past two days (yesterday and today) I have been video recording some of Vada's "episodes". Last night I emailed them to a friend who is extremely familiar with IS/Ws and I emailed them to Vada's Neurologist. My friend responded first. Dr. Jennings called later this afternoon. He said that he had watched the videos a few times and was concerned that she was having other seizures besides the Infantile Spasms/ West syndrome. He thought that she may be having Atonic seizures. He was also concerned with her lip smacking, which tends to be a common physical symptom of several different types of seizures. He too had noticed her eye movement and that made him uneasy.

We have the Sabril (vigabatrin) here at the house just in case the IS came back, but if its not IS then there are other medications that can treat the seizures. Ones that are potentially safer to use than the Sabril. Therefore, he wants to do an EEG and the quickest way to get one done is to admit her to the hospital. So this Monday after I drop the girls off at school V and and I will be taking another trip to Peoria to see Dr. Jennings and have that EEG done. I am assuming that I will know what were looking at before her and I leave the hospital.

I have added the videos that I sent to the doctor to my blog page What Vada's Seizures Look Like if you are interested in seeing what were seeing. You can also find more on my Youtube page. Keep in mind that the movements are hard to detect, they are subtle things that you wouldn't think much of, unless you knew what you were watching for and to be completely honest, we're not for sure if we are actually seeing seizure but it seems as if we are.

Ill just throw this out there for any parents who may have experience with GERD or similar issues. If you watch the newer videos that I posted look at how she is swallowing and the sounds she is making when she does it. She does not have a problem with spitting up so it probably is not GERD, but could it be another issue pertaining to her throat? Any ideas are welcome. I know that children who have Down syndrome have a higher risk (vs. children who do not have Ds) of all kinds of medical issues so maybe this is one of them and not seizure related...?

Nearly Insignificant

This past Tuesday, after we had dinner with the Justin and the girls, Vada and I took another trip to Peoria. She was scheduled to be at the hospital on Wednesday at 8 AM for her sedated ECHO so the hospital reserved a room for us at a near by hotel that way I wouldn't have to drive at five in the morning to get there on time. I am so grateful that they do things like that. This was the second occasion where the hospital provided us with a room.


Besides spilling cheese sauce on Vada's head and forgetting the baby soap the night went well. She fell asleep at midnight and woke up at four, with a feeding somewhere in between (which is pretty close to her "normal" nightly routine), but I was able to get ready and not be rushed so it all worked out.

When we got to the hospital everything went better than I could have imagined. Vada fell asleep and I was able to lay her on me and keep her asleep during the ECHO so we didn't sedate her.

Dr. Bramlet was able to see everything that he needed to see didn't but we didn't receive any set in stone answers then. Actually, what I was told that day was a one extreme or another case scenario. She either would need surgery and need it right away, or she wouldn't and we would be holding off for at least two months. I was dumb founded (which may or may not be an easy things to do) at how undetermined he actually was acting. I didn't understand how it could be one way or another, with nothing in the middle. So, I questioned him.

Dr. Bramlet said that over all children who have Down syndrome and heart issues tend to need operations sooner than those who do not have Down syndrome. Typically the issues seem to arise no later that four to six months, hence the original date for surgery that was given to us during our pregnancy with Vada. He explained that it was either one extreme or the other because she is past that point. He said that he wanted to meet with all of the Cardiologists and get the opinions of the whole group. He told me that they would discuss Vada either in their Friday meeting or on their Monday meeting. Then once they had discussed her he would be calling me back. Mentally, I had decided that if he called me back saying we would need to do surgery that I would take Vada in for a second opinion. Truthfully, while I am happy with the news that I received today, I am still wondering if I should do that, or if I should leave well enough alone.

Around 8:30 AM I did receive a call from Dr. Bramlet (i'm so grateful that I didn't have to wait until Monday). He said that he had discussed Vada's case with his partners and they had come to the conclusion that Vada's VSD is what they are considering "nearly insignificant", (his words). What that means is that yes, the hole(s) are still there, they haven't gotten smaller, but they haven't gotten larger either. Vada shows little to no signs of "struggling" and they all agree that the surgery should be held off awhile longer. By waiting it will give Vada time to grow more and for her heart to recover from the nasty affects that took place because of the ACTH. Doing the surgery now could also bring forth issues pertaining to her recovery due to her stenosis and immunity.

When it comes to Vada and her many different medical concerns I am constantly reminded of the movie Dude Where's My Car. There is a scene when the guys are in the drive through of a Chinese restaurant...



and while it may seem a little inappropriate, there has always been another "and then". I cant wait until her heart and the seizures are no longer an issue so the next "and then" is something joyful and exciting!

As long as Vada does well on a cardiac level, her next appointment will be in four months making Vada fourteen months old and putting us into the month of May 2011.

Getting Physical

This is Kim. She is one of my favorite people who work with Vada. I consider her to be one of Vada's many guardian angels. Kim is a physical therapist who comes to our home once a month. Kim came to us through the Children's Therapy Center of the Quad Cities.

Kim is one of those people that you cant help but like. She always comes over with a warm smile on her face. She is a kind and patient person and when she is working with Vada she is sensitive to whatever maybe going on with her at that time.

In the picture of Kim and Vada, Kim had put Vada in Hip Helpers. They are shorts made out of the same material as biker shorts and the inner leg area is sewn together. By sewing the legs together they hold the legs in a correct position that helps with the muscles in the butt area. They should help with a number of things. We ordered Vada her very own pair.

Vada seems to hyperextend her legs when she is in the bath...,

and sometimes when she is in bed.

I'm not for sure why she only chooses to do it only in these two situations. I am not even for sure if it's done by choice, but I think some of it has to do with her being really relaxed. That and the fact that her muscles are weaker.

The Hip Helpers will also help us hold her in a standing position, which will build her leg muscles.The shorts will also help her stand easier on her own as well.

Anyway, I wanted to mention Kim today. I wanted to tell you about how blessed we feel to be able to have such a kind hearted person working with Vada. I think some people get into careers that is not meant for their personalities and then there is Kim, someone who breaks the mold and goes above and beyond. I'm glad that Vada has her as her physical therapist .