I survived!

I just wanted to say thank you, thank you, thank you for all of the prayers, e-mails, phone calls and text messages I got today. I was definitely feeling the love!

Everything went well- I only had time for the MRI/contrast~ somehow scheduling over-booked the MRI department and I ended up waiting over an hour for my appointment. As a result of that, I missed my appointment for the pelvic ultrasound.


That's good for the nerves.

They didn't use the typical IV on me- they used an angio cath- which controls the pressure of the contrast/dye a little more. It worked. I was so nervous when they started the test! I guess I just kept waiting for my vein to collapse again. I finally calmed down right before they announced:

"You're all finished! You did great!"

That's it? I'm done? I was about to catch a nap in here!


I go back in for my pelvic ultrasound tomorrow, but I'm not at all nervous about it. Then the waiting begins, and I will be so glad to be on the other side of this. I'm sure that everything will be fine, it's "not knowing" that's getting to me.

Again, thanks. The support means more than I can say.

Hugs~

Linda

Tomorrow..........................

Tomorrow I have an appointment for an MRI re-do. Wait- you don't know what I'm talking about? That's because I basically suck at blogging. I am a pseudo-blogger. I'm trying to do better. I really am.

Two weeks ago I had an appointment for an MRI to follow up on a worrisome spot on my left breast. I was very nervous about the appointment, because my asthma has been C-R-A-Z-Y lately. I was scared that once they slid me into that tube I would have a hard time breathing. So I told the tech about my asthma and we decided to go for a "test run" before she put the contrast I.V. in. She slid me into the tube, and I freaked out at first, but once I made myself calm down I decided that I could do it. Mind over matter, that's what I told her. She laughed.

???

Anyway..................she put the IV in and tested my vein with saline. 3 times. Then she slid me back into the tube and started the MRI. She checked on me a few times during the test but I was hanging tough. The IV/contrast part of the MRI doesn't happen until the very end so once we got to that point she let me know that it would be really loud for a minute and a half, then she would start the contrast and that would last for 5-6 minutes. (Yeah, right. If you've had an MRI you know what I'm talking about. It's going to get really loud? Really? What has it been for the past 30 minutes? )

I was watching the IV to see if I could tell when the fluid was coming. Nope- but when the liquid started squirting down my arm and onto my face, and there was a crazy stinging sensation in my arm, I figured it out. I quickly pressed the panic button and two techs rushed in and stopped the IV. One of them was a male- and he was the one checking my IV! Don't mind me, sir, I'm just lying here mostly naked but COME ON IN!

Mr. Male Tech announced that my vein had collapsed and proceeded to take the IV out. The female tech that had put the IV in was apologizing profusely. And by apologizing profusely I mean freaking out.

"I tested that vein 3 times! I am so sorry! Oh my God! I can't believe that happened! I tested that vein 3 times!"

I assured her that it was ok, that these things happen and that yes, she had tested my vein 3 times.

That doesn't take away the sting, now, does it? (Don't worry, I didn't say that to the poor girl.)

Meanwhile, I'm looking at the clock, knowing that I needed to get out of there and pick Lila up from school. I asked if we could choose another vein and finish the test. The tech informed me that we would have to wait at least 36 hours in order to clear all of the contrast from my system as they had no idea how much was just floating around in my body right then. Great. She told me to drink plenty of water to flush my system as quickly as possible. She also told me that my left arm would probably hurt for hours. Then she corrected herself to say that the entire left side of my body might hurt for hours. Awesome.

It did.

A few hours later I was vomiting and had the diarrhea like mad crazy. (Sorry, but I can't tell the story without that little bit of info.) I was pretty nervous about what was happening inside my body. After scaring the living fire out of myself looking on the internet, I decided to call my friend Annette, who is a nurse. She was cracking me up as she went into full nurse mode but eased my mind and assured me that I was going to be ok- I was having an allergic reaction- but my symptoms were getting better, not worse. She told me to go to bed and if I got any worse during the night to go to the E.R. That didn't happen and I woke up feeling very relieved.

After that lovely experience, I decided not to continue with the IV/contrast portion of the test- that the radiologist would have to "make do" with the images they got during the first 30 minutes of the MRI. I had already re-scheduled my appointment so I called the radiology office to cancel. Oh, boy, did that cause a stir. The tech consulted with the radiologist, who called me back personally, urging me to change my mind. He told me it was imperative that I finish the test, that they needed the contrast to get a good look at the "problem area". I called my sister, Brenda, who recently completed her chemo treatments for breast cancer. She told me to listen to the radiologist and finish the test.

So I'm keeping the appointment. This will be me, tomorrow. Back in the tube.

Wait. No it won't, because I won't have that many clothes on. LOL

I have been given a steroid to stop an allergic reaction to the contrast dye. Unfortunately, the last two times I had to take steroids I broke out in hives and had to go to Urgent Care for a shot to stop THAT allergic reaction. Seriously.

I took the steroid 2 hours ago and can feel the hives underneath my skin- so I will take Benadryl for that allergic reaction. Oh, dear. It's really almost comical.

I have said all of this to say......................

Please say a prayer for me if you will. I can handle the allergic reactions- they will go away. What I'm nervous about is the possibility of another vein collapsing- this also happened to a different vein when they put my IV in for my hysterectomy 2 years ago- so this wasn't the first time. I also want to hurry up and get the MRI results.

I don't think they really see anything concrete, I feel like they are just being SUPER careful because of my family history. For that I am thankful. I'm still a little worried and would appreciate your prayers.

P.S. Immediately following the MRI re-do tomorrow I have an appointment for an ultrasound to follow up on the cyst in my left ovary. Everything is probably fine, but again................ I sure would appreciate your prayers.

Hugs~

Linda

Thankfulness

It's Thanksgiving Day! I'm sitting here on my in-law's computer. Justin is sleeping in the room next to me and Tiffani is sleeping downstairs. My father-in-law keeps forgetting that I'm in the office and turning the light out. LOL My mother-in-law is in the kitchen making rugala. Nick is also in the kitchen, feeding Lila. We're all here, under the same roof, to celebrate Thanksgiving together. In a few minutes the oven will be free and I will make pecan pie for our dinner with Nick's family. We will head over to his sister's house and his brother's family will be there too.

So many people don't have these blessings. Some people are sick, some are in the hospital, some have to work, some are estranged from their families, some don't have families, some are homelesss, some don't have the money to buy food, some don't have heat in their homes, some are deployed. You get what I'm saying.

I'm so grateful for my parents and siblings today. Even though I miss them so much, I know they are together with their families. Having a brother and a brother-in-law in the military, along with a brother that just retired from the military, I'm also thankful that nobody in my family is deployed this year for the holidays.

That being said, I'm thankful for the men and women that are serving our country away from their families right now. May God keep them safe.

I'm grateful for my friends. I don't like being so far away from my family but having awesome friends really helps. I'm thankful that I have friends who truly care about me.

So many times I get caught up in my life-mostly Lila's delays, I guess. That steers me away from all the good things that are going on and everything I have to be thankful for. I am so blessed.

The oven is calling my name. Happy Thanksgiving everyone!

Hugs~

Linda

Simply Thick

Introducing Simply Thick, Lila's favorite mixer. She continues to enjoy daily cocktails of prune juice with Simply Thick, white grape juice with Simply Thick, water mixed with Simply Thick, and an occasional chocolate rice milk mixed with Simply Thick. At the ripe old age of 3, I would have to say that Lila is a Simply Thick addict. We have tried to break her of the habit, but every time we do, that mean old swallow study says she still needs it.

We test her on our own every once in a while, like we did last week. Tiffani and I were having lunch with Lila at Chik-Fil-A. As a side note, it's quite comical when I tell the person at the counter that Lila doesn't need a drink to go with her kid's meal. They just look at me like, "What?" And I repeat myself. "No thanks, she doesn't need a drink." They always say that they have to give me a drink, it's part of the meal. Okay, whatever.

Back to last week~ Not wanting to mess up their iron-clad inventory system, I ordered an apple juice to go with Lila's meal. As we were eating, Tiffani suggested letting Lila try the apple juice. I agreed, since we hadn't given her anything without thickener in it for a while. She drank out of the juice box with absolutely no problem. I was glad, but knew better than to get too excited about it.

Two nights later, I was giving Lila her Zyrtek and she started choking on it. I always give her medicine in small amounts, so I thought she would be fine in a couple of seconds. Not so much. First she turned red, then purple. I was trying to stay calm for her sake, while working to get her out of the high chair as quickly as possible. I rushed her over to the kitchen sink, hitting her on the back as we made out way over there. After a couple of seconds she threw up in the sink and while she was very upset, she was fine.

I wasn't fine. I was mad at myself for not being more careful, and frustrated that just two days earlier she had been fine with liquid that wasn't thickened. She's been on thickened liquids for 3 years. Will she always require her liquids to be thickened?

It's not the end of the world if she does, but it's just one more thing that makes her different from most people. Obviously having to thicken everything she drinks is better than the alternative- aspiration. I've had a couple of people ask me about aspiration and what it means, so I decided to look up a clinical definition instead of giving my own explanation, which wouldn't be as thorough.

What is Aspiration and why is it important?

Aspiration refers to fluid or food entering the airway and moving down into the lungs. Aspiration can be caused by food and/or oral secretions entering the lungs while eating or it can be caused by stomach contents moving back up the esophagus and spilling into the person's airway. Either can cause aspiration pneumonia. Usually when someone aspirates they cough in an attempt to clear the food or fluid out of their lungs. Some people with neurological damage resulting in a weakened cough reflex do not cough - this is called "silent aspiration". Swallowing problems resulting in aspiration are more common in individuals with developmental disabilities (especially those with cerebral palsy), in individuals who have had a stroke, and in individuals who are elderly. Frequent aspiration can cause pneumonia and/or permanent damage to the lungs and if left untreated may even cause death.

Silent aspiration- that's what we discovered the last time we tried to wean Lila from Simply Thick. We had been decreasing the amount of Simply Thick in her liquids, and she seemed to be doing fine. We were doing this under the direction of Kelly, our speech therapist at the time. She suggested a swallow study to ensure that Lila was ready to move to non-thickened liquids. The morning of the swallow study, I felt so confident that we would never have to buy another box of Simply Thick again.

WRONG. Lila aspirated on the very first drink. Kelly and I weren't even paying attention to the screen, we were both standing by Lila. When the doctor said that she aspirated, we were shocked. I think we both said, at the same time, "No, she didn't!" And he hit rewind and showed us that she had, indeed, aspirated. She never coughed, never sputtered, never even made a sound. Silent aspiration. Scary. During that particular swallow study, Lila silently aspirated 80% of the time.

Another cause of aspiration is reflux, which Lila also has. Lila is on Simply Thick for two reasons- so that she will be less likely to aspirate when swallowing and to give liquids more weight to help keep them down. Most kids outgrow reflux by the age of 3. Lila hasn't.

After the choking incident last week, I have been thinking about the necessity of Simply Thick in Lila's life and why it was bothering me so much. I realized that I needed to take a step back from the minor irritations:

It's expensive.
It's not covered by Medicaid or insurance.
It has to be special-ordered as no pharmacy in our area carries it.

It may be slight inconvenience to us but it's a life-saver for Lila. Thankfully a very observant nurse brought a potential issue to the attention of Lila's first speech therapist in the NICU. A swallow study was ordered, and it was discovered that Lila was aspirating. She had only been taking food by mouth for 3 days so there wasn't time for permanent damage or the onset of pneumonia.

From the beginning of Lila's life, God has inserted all of the right people exactly where they needed to be. And I'm so thankful. I just needed to be reminded.

Signing off to make more cocktails~



Linda

For Sissy and Justin

Lila representing Eastern University for Justin:

And George Mason University for her sissy:

Hugs~

Linda

Ginkgo Biloba

A few people have asked me about Ginkgo Biloba and why we decided to start giving it to Lila. I first learned about Ginkgo on the Changing Minds website, where they have info about giving Ginkgo Biloba along with Prozac to kids with Down Syndrome. Well, to be honest, that kindof freaked me out a little bit. It might have been the thought of giving my 2 year old Prozac, but that's just me.

Soon after I read about Ginkgo on the Changing Minds website, I read the following "warning" statement from down-syndrome.org.

An organization called the Changing Minds Foundation is promoting a "new treatment for Down syndrome" that leads to "life changing" results. The "treatment" includes regular doses of Fluoxetine (Prozac), Dexmethylphenidate (Focalin XR) and Ginkgo biloba, Phosphatidylcholine, ‘Body Bio Balanced Oil’ and folinic acid. Some of these substances are associated with potential harmful side-effects. Some of these side-effects are of particular concern for people with Down syndrome and younger children. Fluoxetine (Prozac) is used to treat depression, obsessive-compulsive disorder, bulimia nervosa and panic disorder. Dexmethylphenidate (Focalin XR) is used for the treatment of attention deficit and hyperactivity disorder (ADHD). Their use should be initiated and monitored by an appropriately qualified physician and should be limited to applications and treatments formally reviewed and approved by appropriate governmental and medical drug regulatory agencies.

So I considered myself warned. I didn't really think about Ginkgo again until a few months later when a friend of mine told me about the Einstein Syndrome website. I joined the listserve out of curiosity, and what do you think they were talking about the day I joined? The benefits of giving Ginkgo Biloba to our kids with Down Syndrome. I decided to do my own research, and found this website, which has a lot of good info about Ginkgo. Including how it helps with erectile dysfunction, but that's a bit off topic, isn't it? Seriously, though, this particular website has a lot of good info on it, such as:

Ginkgo biloba is considered to be a "smart drug" to stimulate brain function and boost memory, and as an antioxidant to slow the effects of aging and prevent degenerative diseases. It increases the blood flow to the brain. Benefits of enhanced circulation in the brain include improved short and long term memory, increased reaction time and improved mental clarity. Ginkgo also acts as a powerful antioxidant and contributes to the oxidation of free radicals which are believed to contribute to premature aging and dementia.

After more research and many conversations, we decided to give it a try. I started taking it a few days before we gave it to Lila, just to try it out. I experienced no negative side effects. We started Lila on a reduced dosage, and did that for about 2 weeks before we increased to the full dosage according to her weight. Some of the changes we are seeing:

Increased speech- including more words and stringing words together to form sentences

Asking questions- maybe it's a concidence, but before we started her on Ginkgo she never asked questions. Now she says things like, "Where daddy go?" and "Sissy home?" and "Daddy at work?"

Awareness of her surroundings- again, maybe a coincidence, but she seems to be more focused. As an example, we drive by the park every day on the way to and on the way home from school. Since we started her on ginkgo, when she sees the park, she points at it, says "park", and asks to play. "Mama! Park! Play? Play! Park!" She gets so excited that it makes me feel guilty- 9 times out of 10 we are not headed to the park.

Ability to focus- Lila has always had a pretty good attention span, but it has noticably improved. Two of her therapists have commented on it. Lila has still has reflux, so she still has to be upright and still for 30 minutes after she eats. She watches videos and reads books during this period of time. It is amazing to listen to her as she watches a video she is familiar with. She talks and sings right along with whatever is happening. It's exciting that she has the attention span to sit and learn, along with the ability to retain the information.

Those are just a few examples that were on the top of my head. As for me, I have definitely noticed a positive difference in my mental clarity . At my age I need all the help I can get! Seriously, though, as we get older, things start to get a little fuzzy. That was definitely happening to me and while I still have my moments, I am seeing a definite difference since I started taking Ginkgo.

So there it is, our limited experience with Ginkgo. Don't take my word for it, though. Do some research for yourself before you make the decision whether or not to give it to your child. If you ask your doctor, unless they are into homeopathic and/or holistic remedies, they will probably tell you to proceed at your own risk. It's definitely not "FDA" approved, and there are no studies out there to prove whether or not there are actual benefits to taking Ginkgo Biloba.

Think about it, though, who would pay for those studies?

Just my thoughts~

Linda

Changing Lives/First Call Programs

My friend, Bethany, and I are taking over the Changing Lives program for our local Down Syndrome association. Changing Lives is a program that was designed to educate physicians, nurses, genetic counselors and other health care professionals on the clinical and developmental needs of people with Down syndrome. It was also designed to help prepare professionals to deliver diagnoses, and other sensitive information to parents, whether prenatal or postnatal. Bethany and I are both very passionate about the program, and had both signed up to participate in the program under previous coordinators, but nothing ever worked out for either of us. That's not even worth discussing anymore, so we're moving on.


We thought it would be a good idea to have conversation with someone involved in a thriving Changing Lives program. I contacted NDSS as I figured they would know about the most active and successful Changing Lives programs near us. I was surprised when the lady at NDSS told me the Changing Lives program had been discontinued. Hmmmm....... we're a little late then, aren't we?


New and improved were the words she used to describe the program that's taking the place of Changing Lives. Introducing.............the First Call program. Here's some info from the First Call website. Three years ago, the Joseph P. Kennedy Foundation awarded the "First Call" grant to NDSS and NDSC to survey materials from across the nation and offer recommended prenatal and postnatal materials for accurate and up to date information about Down syndrome. Specifically, the national Down syndrome organizations indicated that they were motivated by recent announcements about new prenatal tests for Down syndrome, the recently passed Prenatally and Postnatally Diagnosed Awareness Act, and ACOG recommendations that all women be offered prenatal testing for the condition.


I am excited about one of the new publications, Delivering a Down Syndrome Diagnosis Guide, as this goes along the lines of the old Changing Lives program. Here are the words the website uses to describe it. The Medical Professional Guide describes how to deliver a Down syndrome diagnosis using key references from the Journal of the American Medical Association, American College of Obstetricians and Gynecologists practice bulletins 77 and 88, and recommendations based on research by Dr. Brian Skotko. The professional writing, design, and photography are essential when approaching medical professionals who regularly receive high-quality materials from other organizations and pharmaceutical companies. After consulting with multiple medical professionals to gauge the optimum format, they overwhelming recommended a brochure distilled to one page. Our bi-fold format does just that with a professional elegance that mirrors the companion expectant parent book.

The expectant parent book, Understanding a Down Syndrome diagnosis, is also available through their website. As our local Down Syndrome association has a Parent to Parent program, I guess they will be distributing that publication. We still have a lot to figure out, working together with the Parent to Parent program without stepping on each other's toes.


As I write this, I know that the samples are in the mail, on the way to my house. I can't wait!! I asked my husband earlier today to let me know when he heard the mailman. He kindly reminded me that this is Veterans Day, and we will not be receiving mail today. Oh, well, it will be here soon enough.

I'm wondering if any of my readers are involved in the First Call program or the Changing Lives program. If you are involved in the Changing Lives program, is your organization going to be switching over to the First Call program? Do you have any information that would help us get this program off the ground? If so, please e-mail me at lindanargi1@yahoo.com.

Please wish us luck and/or say a prayer for us as we work together on this.

Hugs~

Linda

Luke B

This cute boy? His name is Luke B. Or as Lila says, "Wuke B". Luke and Lila have been in the same preschool class since last year. Luke was born with a very rare neurological condition called left hemimegalencephaly (HME) (which pretty much means "half enlarged brain"). This disorder causes seizures and developmental delays. Since it's the left side of his brain that has the enlarged ventricles, his right side is much weaker, almost paralyzed. Kids that have HME all suffer from seizures. Some much more severe than others. Luke is one of the lucky ones that has great seizure control with just 1 medication. There are some kids that are on numerous medications and some that have had a radical surgery to remove the "bad" portion of the brain. Luke has been seizure free for over 1 year!

There is a great foundation, The Hemispherectomy Foundation, established by a family of a little girl who had to have a portion of her brain removed. The Foundation supports the kids and families that are going through the process of surgery. They are currently selling Christmas cards, created by kids that have HME. Take a look for yourself! I think you're going to love them.

http://hemifoundation.intuitwebsites.com/ChristmasCards09.html

Please buy a box or two and support Lila's friend!

Hugs,


Linda

Back to back playdates

The schools in our county and some neighboring counties were closed yesterday and today. Our local Down Syndrome support group scheduled a couple of playdates to get the kids (and moms) together. We had so much fun! The weather was beautiful, which made it especially nice for our outdoor playdate on Monday.

Here's a picture of Lila rockin' the stairs to the slide

3 weeks ago I had to follow her around because she was too scared to continue what she had started- like sitting at the top of the slide, holding up the line, refusing to go down.

That is no longer an issue, apparently.

Now she just needs to learn some "slide etiquette" if you will. Poor Riley.

Today, we had the pleasure of enjoying the gym at a local therapy center. One of our moms set the whole thing up. The therapy center, Kidazzles, allowed us to use their gym free of charge. People were asked to give a donation and we ended up raising $183 to go toward our local Buddy Walk, which is fantastic. What a great group of moms and kids we have. It's awesome.

Roxy and Lila are trying to wake Roxy's little sister, Lena, up from her nap.

3 little cuties in a boat

Lila and Olivia under the parachute

Riley playing with one of the hula hoops. Caught him smiling!

Friends

More friends

Everyone was having a good time!


Cyndy and Mackenzie having fun with the hula hoops!

And after a very long day, Lila was too stimulated to take a nap. I held her for an hour, and she really tried to go to sleep, but wasn't able to. I put her in bed, hoping she would finally give up and take a nap. It didn't happen. Instead, she broke her mobile in 3 pieces and threw everything out of her crib.

She was too big for a mobile anyway.

Red, puffy eyes from no sleep. That doesn't stop her from smiling, though!

Thank you , Lord, for a great support group and wonderful friends. We are so blessed.

Hugs~

Linda

A great place to learn

We bought Lila these letter for the bath:

She absolutely loves them:

And they seem to be working: