World Down Syndrome Day 3-21

In honor of World Down Syndrome Day, I wanted to write about Down syndrome, and how to show awareness. Gavin is almost 4 months old now, and in those short 4 months I have learned so much. The way I think about life has changed, and through all of this, my heart has opened up and I have become so aware of many different disabilities that I didn't even know existed! This world may be full of pain and suffering, but it is also a world of beauty and love, selfless love.  Things may not go how you expect them to go, but you will find the beauty in them. I have feelings that I never dreamed I could feel.

As much as I have learned and grown, I still often asks myself, "why do you think you were chosen for this journey?" I may never know the answer but I sure try to figure it out. Maybe it's to teach me patience I am the most inpatient person in the world I am constantly hurrying from place to place. I lose my cool a lot on the kids when we are in a rush to get somewhere and they are dragging their feet. Maybe it's God's way of showing me that I have to find beauty even if it's in the package that I didn't expect I need to learn to love regardless of the cards that I am dealt. Call me a little materialistic or just crazy but I have a problem with symmetry and how you look. I had braces but my mid-line does not line up and therefore I want braces again. My nose is crooked so it drives me absolutely bonkers. I don't think I've told many people this but when Lukas was born one of his ears stuck out more than the other one and I wanted to have surgery on his ear so bad. Curtis called me crazy of course and we never did it. It still sometimes bothers me to this day. And I need to learn that it doesnt matter what someone looks like, or what they can and can't do, what matters is where their heart and soul are at.  Now looking back on it, I find it silly compared to everything else we're going through now. And lastly, maybe God decided to give us Gavin because he knows I have such a big heart for children or a sad heart and I want every child to be loved and appreciated. Whatever the reason is I know in my heart that our lives are changed for the better.

One of my favorite blogs is Noah's dad .  His son Noah has Down syndrome and their site is so informative and also very entertaining.  He answers a lot of questions from people all over the world. He does an awesome job at spreading awareness all the time, you all should check it out, if you haven't already. If you want to learn more about Down syndrome Rick, (Noah's dad) put together a post and it is very simple and straight forward. You can view that HERE .  Down syndrome does not define a person it's not who they are, it just happens to be something that they were diagnosed with. Gavin will be his own person, he will have his own identity. He may do things slower or more delayed  than other kids but he will still do them at his own pace and in his own time. 

So for National Down Syndrome Awareness Month, I am going to be raising awareness for Down syndrome.  If you would like ...please join me in letting the world know that Down syndrome is ok.   On his website he has 14 ideas to help you make the most of Down syndrome awareness month. I am challenging myself to do all 16 or at least most of them. One of them is to make an informational down syndrome video so I am going to use his video because I like is better lol. Please watch this video, it is very informative and you might just learn something you didn't know. 

 
Another option he suggested was to create a Down syndrome resource board on Pinterest. If you are not following me on Pinterest please do, because that is the next thing I am going to be working on.  I am also going to be posting a Down syndrome fact a day on my Facebook page.   And one of my favorite suggestions that he offered was to start a YouTube channel to share your videos of your little one. This way it can show other people how normal your life really is with a child with Down syndrome.  In my next post I will also be sharing top 10 blogs by families but other families raising a child with down syndrome I'll be sharing this on my blog sometime soon. Thank you Noah's dad for these awesome ideas.

The last thing I want to talk about is using the R word. Just because I had a child with down syndrome does not mean I automatically blocked the word retarded word from my vocabulary. After reading an article and watching this video clip,  I realized that it's very offensive to use that word even if you are not meaning it in that way.  Without thinking I would say phrases like "that's retarded" or "oh man, I cant believe I did that, I'm so retarded." I never used it in an offensive way and directed towards anyone.  I grew up using that word and it is very hard to break a long term habit but I am consciously aware of it and I am going to take the pledge.   Please take 30 seconds and watch this short film about why using the "R" word is wrong.

 There is actually a campaign called : "Spread the Word"- spread the word to end the word. Help raise awareness about the hurtfulness of using the r-word. 

We love our lil "G" so much and cannot imagine our lives without him.  Don't be scared of Down syndrome.  It truly is ok.  It saddens my heart to hear of so many people that abort babies that have Ds.  Maybe our world would be a happier place if we had more people with Down syndrome.

 

 Please join us tomorrow in wearing your blue and yellow to show awareness and support!  Support baby Gavin! Show him some love :)

  HAPPY DOWN SYNDROME DAY!!

Love this!

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Just a little bit of what we have been up to...

First, I want to let you all know that I may be the worlds worst blogger.  I have a problem staying on track, and committed to something.  My intentions are always good but I cannot even remember what I did this morning. So.... here we are, weeks later and I am just now remembering to sit down and write.
      What have we been up to the last few weeks? A little bit of everything.  Zachary turned 5 last week and we had a Batman celebration. He had a blast and absolutely LOVES being 5. The first few days he didn't quite "feel" 5, but now he does so all is well. How do I feel? OLD. Turning 30 this past year made me realize that as much as I knew I was getting older I never felt it, until now. You want your kids to grow up and do awesome things, however knowing that these past 5 years just flew by, makes me sad and I don't want him to grow up anymore :(

 I made everything for the party and got some pretty creative ideas from Pinterest (of course).  I love doing this sort of thing even though most of the time the kids don't even notice or care.  I guess its more for me, and the fact that one day they will hopefully look back and appreciate it. I could buy everything and I am sure they would love it just the same but I guess its my creative side that thinks this is the better way.

Recently the weather here in Charleston has been so unpredictable. One day its 80 degrees, then the next it drops in the 30's and then we get rain for a week straight. We did have a few nice days where we could take the boys to the park or the beach to play. This was Gavin's first trip to the beach and I think he really enjoyed it.

I adore baby feet

We do photo shoots as much as possible! I am one of those moms that takes pictures of every step they take. No lie! I take around 100 pictures a week on my iphone.  I want to remember every smile, and every moment of them experiencing life...what better way than pictures? So here are a couple of my favorites...

Those lips!

Gavin started therapy this past week as well. We met his early interventionist and she seems very friendly. He doesn't seem to be behind in anything at the moment, since he is only a baby.  He is doing everything he should be doing as an almost 4 month old. When and if he starts falling behind then we will be having more appointments with other therapists, but for the time being we are just working on simple things. Gavin's homework: sitting up unsupported and shaking a rattle. He absolutely loved his therapist blowing bubbles for him. 

Bubbles!

Such a big boy

We have been back to the ENT, and Gavin still has fluid in his ears. Looks like tubes will be in his near future. As much as I wanted the fluid to drain on it's own, I also want the best for him and give him every opportunity for his speech not to be severely delayed, so if that means tubes, then tubes it is. Besides that he is a happy baby...always smiling and cooing...he is already showing us his little personality and laughing up a storm. He does want to be held 24/7 which makes it hard for me to do anything else, but I am thankful for all the snuggle time. We are just taking everything else one day at a time, which is extremely hard for me to do.  I need to learn patience and I need to learn to stop focusing on all the what ifs and live in the moment. So with that being said, at this moment we are doing great, and that is such a wonderful thing!

I hope you all have a great week, and remember that Friday is World Down Syndrome Day (3-21). Make sure you wear some blue and yellow and show your support :)

Family Fun-Day

Since today is Presidents Day, Curtis and the boys were all home, so we decided to make it a family day. Last week we had a huge ice storm here in SC, and since the boys were stuck in the house most of the week, we decided get out of the house and have some fun. We have lived in the Charleston area for 7 years and still have not seen all the historical spots here yet.  Today we decided on Charlestowne Landing.  This place is absolutely gorgeous! We were definitely missing out. Once we arrived there I had no idea how big this place actually was.  We went back and forth about taking the double stroller or the single, and we went with the single...I am here to tell you that if you go there with little ones...TAKE THE DOUBLE! We walked and walked and walked some more. It is definitely worth it, but what we did not know is that you can bring your bikes or scooters and ride around the trails and paths.... this is a must for next visit. I took lots of pictures to share.... Enjoy!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Legare-Waring House

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Gavin slept the whole time, so he missed out

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Huge pine cones

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Taking a break from walking

The boys were so excited when we found out that they also had a mini zoo. We saved this part for last to give them some motivation to keep walking.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

The Red Wolf

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

To Vaccinate or Not To Vaccinate...That is The Question

***Update at the bottom ***

Let me start this post by stating that I am not here to make anyone feel bad for vaccinating or not, nor am I wanting to have a heated argument about this matter. I am simply stating my thoughts, feelings, and concerns.  I know this is a controversial subject so please keep an open mind while reading this.

With my first two boys, I chose to split up and spread out their vaccinations. This was not a hard decision for me because I had already done a ton of research beforehand ... I read books and articles and came up with my own game plan. I took what other people said into consideration, but in the end it was my decision.  This time around I am having a hard time.

I do not consider myself a "crunchy" mom, but I am definitely not a "creamy" mama either.  Since I do share characteristics from both sides,  I would say I am somewhere in the middle.  I will chose a natural remedy(that actually works) over an RX any day, but sometimes it is necessary to take a prescription.  I think we eat pretty healthy, and I chose to eat organic over non as well.  I like to use natural ingredients as much as possible, but I love my sweets.  So yes, when it comes to vaccinations I am also somewhere in the middle. I respect both sides, and I understand both sides.  Do I want my child to die from a horrible disease that may have been easy to prevent? NO of course not! but do I want my child to die from a side effect of a vaccine? No way! So what is a parent supposed to do? The reason this decision is so much harder for me this time around is because our pediatrician suggests (as most do) to get all vaccinations when they tell me to...especially Gavin since with Ds he told me that his white blood cell count is lower and that he will have a lower chance of fighting off an infection or disease. This seems like a no brainer, however... because he will have a hard time fighting off certain things, he will also have a hard time fighting the foreign substances being injecting into his body. (which at his 2 month appointment, the other day, would have been 8 vaccines) It's like chemical overload for his little baby body.  Also, vaccinations lower your immune system temporarily, which is why you are more susceptible to getting sick. This is also something I worry about for Gavin. It's a catch 22! I have asked a few people and they tell me to ask my pediatrician on their opinion. But in this case...that's not such good idea since they are EXTREMELY PRO-vaccinations, I will only get a one sided opinion.

Like I said above, I am not anti-vaccinations...although there are a few that I WILL NOT get, (if you want to know which ones and my reasons, you can email me). Zachary is 4 years old and he is up to date on his shots, and I split them up as much as I possibly could. Yes, this means it's more inconvenient for me as I have to take him a few more times to the doctor but it is definitely worth it to me.  But once again, this is my decision and as a parent its your decision as well.  I am not here to tell you what you should or shouldn't do. All I ask is that you educate yourself on both sides and make a decision that's best for you and your family.  I love Dr. Sears, and I love his book, The Vaccine Book. He has an alternative schedule in his book, but he does not push either way, he just informs you on each vaccine, including the ingredients and any side effects. This way you know what you are putting in your child's body instead of just following along with everyone else.

So with all that being said, I for once don't have an answer for this.  I am pretty sure I going to proceed the same way I did with my other two. I need to do some more research and I would also love to hear from any other moms or dads who have a child with Ds and what they chose to do. I am honestly torn....

On a positive note... Gavin weighed in at a whopping 12lbs 4 oz! He has gained 4 lbs in a month, and yes, he is still a breastfed baby. He is so much more alert now. He is attentive and loves to look at the world around him. He is now smiling, laughing and cooing, which just melts my heart.

****Update on Audiologist/ENT Appointment****

Last week Gavin had an appointment for an ABR, (Auditory Brainstem Response). Basically from what I gathered, this is a test to see if there is any electrical activity in the brain through the use of electrodes on the scalp, after hearing different sounds. So in laments terms, they are trying to bypass the fluid in his ears to see if he has hearing loss, and to what degree.  The outcome? I have no idea! To be honest, I was not extremely happy with that ENT practice.  I felt like I never got a good answer. I was there for 5 hours and I felt like I kept getting pushed off on someone else.  The only answer I got was that he is NOT deaf.  Which I already knew because he startles with loud noises. They said they would have to write up a report but they could not get accurate readings on all the tests that they performed. A doctor was supposed to go over the report but because it took so long, that specific doctor had already left so we saw a PA instead.  She had no idea what was going on and even stated that the next step would be an ABR....HELLO??!!!! Is that not what we were just doing for the past 5 hours??? Then she writes me a script for an antibiotic to (and in her words) "try and dry the fluid up". I am no rocket scientist, but if there is no infection, how is an antibiotic going to dry up amniotic fluid? I double checked with my pediatrician and he didn't think that was a good idea, and if anything we should try a decongestant. We do not know anything else at this time, and we may never know, until the fluid drains or he has tubes put in. From there we will be able to see if he has any degree of hearing loss or not. Until then we will just have to turn the music a little louder during our family dance parties so he can enjoy it too.

My poor little baby boy did so well!