Is it March Already?

 And Almost World Down Syndrome Day!

Kristen Pace Photography

Almost 5 months have flown by and I finally find myself having a minute to update you all.  Its been a rough, depressing winter. Last I wrote, I went on an adventure of some sort to find a "cure" for my terrible back pain I was experiencing.  I decided I was going to eat extremely healthy, eat an anti-inflammatory diet and find the cause of this mysterious pain that no doctor could diagnose (except for arthritis, which I wasn't going to take).  I had some great recipes that I was going to share with you, (and still will) and was doing great on my journey...but the pain was still there...so to make a long story short, I cut out whole food groups...no dairy, no grains...NONE AT ALL...no sugar, to processed food, and no caffeine.  So I basically ate grass...no not really but close.  Fruits, veggies, meat and lots of nuts. Did I feel better? Absolutely not. I got worse...but in a different way. I lost a ton of weight (not trying to) which contributed to my problem. I got to a point where my body actually was shutting down and telling me to stop. I had a high fever, couldn't get out of bed for a few days. My body was literally using my muscle for energy...so I had to regroup and start getting myself back to a normal body weight.  After a few months of struggling through that I am finally at a place where I feel is "healthy".  I found out that my pain was actually "normal" for what I have been going through.  My muscles are in a constant state of tension. I am lifting all day long and with Gavin's low muscle tone...it feels like he is heavier than he is.  I don't want to take muscle relaxers for the next few years, and I can only get a few cortisone shots a year (which I don't really want to do either) so building muscle, exercising and strengthening my core are the best options for me. I have only been on this path for two months now, but my back pain is completely tolerable now and getting better by the day.  I am having a balanced diet with a variety of food groups. Still clean eating though. Very little caffeine and sugar. Only dairy I eat is butter (to put on weight, has to be grass fed) and I am back eating grains, but all whole grains.  I am hoping to put a few recipes together to share very soon...or at least our top 3, that even the kids will eat.
 

Gavin is doing great! He is crawling everywhere, pulling up and cruising on furniture. Will stand for a split second on his own but still hasn't mastered that yet.

We celebrated his first birthday back in November after Thanksgiving. I had a rough time on his birthday because all the feelings of his birth came flooding back to me. I had to re-live the whole thing over again.   People told me that it gets better with time..and it does but just when you think you are doing better....wham! All those horrible feelings hit you smack in the face.  Lots of ups and downs again and the depressing winter we have had didn't help at all. I will say that this little boy is amazing. His little personality is contagious and he is so loving! As much as I don't like DS, and  I can't stand the fact that he will have to work harder at everything he does in life,  does not change the way I feel about HIM.  I hate his diagnosis but love this boy unconditionally.  Its safe to say this kid really loved his party very much.

"Ahhhh, CAKE! My mom hasn't given me any sugar my entire first year of life!"

Not sure about this hat

Just tried some cake

Gavin celebrating with two of his buddies

Christmas came and went very fast as always. And 2015 brought lots of new therapies for Gavin. We started our neurodevelopmental therapy program that we traveled to Atlanta for. This is something we do on our own at home everyday with Gavin, lots of flashcards, exercises and touch therapy. Its lots of work..no lie! I barely have enough time during the day to get 3 kids fed, clothed, bathed, etc. but adding therapies into that mix, makes my head spin.  We also started seeing a cranio-sacral therapist who is really good. She manipulates his skull and facial bones to help with certain problems that children may have: fluid in his ears, congestion, mouth breathing etc. The last 2 thing we added were speech and oral motor skills. Gavin is STILL nursing. Yes, he is 15 months and ONLY TAKES THE BREAST! The boy eats grilled cheese sandwiches, and veggie straws but does not know how to swallow liquids!!! Talk Tools is supposed to help him with oral motor function and eventually be able to swallow liquids from something other than me! Besides the drinking problem he is doing great with everything else. Just wanting to be like his big brothers.

Christmas 2015

   
    Lukas on the other hand is regressing on being potty trained. After almost a year of being trained with the occasional accident, he started going in his pants 2-3 times a day! I don't know why, and I don't know what to do about it. Is this a phase? Is he doing it for more attention? I would love any advice from someone who has gone through this. On a positive note, he learned how to ride his bike without training wheels! A 2 year old riding a bike with a diaper and a paci...how funny?? Besides that, hes still the cool, crazy middle child who is constantly getting into stuff.
      Zachary is ready for school to be out for summer :(  Kindergarten isn't the same as it used to be. There is a lot more pressure and not as much fun. He is learning a lot and does enjoy it once he gets there, I just feel like we fight every morning to get him to go to school. He absolutely hates getting up early (which who can blame him?)  He celebrated his 6th birthday last week and is so excited that he is finally older, lol...I am not excited :(

SkyZone with his friend and brother

Pizza was birthday dinner

We have both the boys in spring soccer and this is Lukas' first time playing so this will be interesting. 

Such a cute!

      Last weekend we went to the IDSC (International Down Syndrome Coalition) meet-up in Charlotte, NC which was a lot of fun. We got to meet some other families that are going through some of the same things we are going through.  I was extremely optimistic after hearing and seeing some of the children and talking with their parents.  It was a lot of fun and a great way to kick off the month of World Down Syndrome Day. Which brings me to my next topic...

Love these two, don't know what I'd do without them

Enjoying the wave pool at The Great Wolf Lodge!

***This Saturday, 3/21 is WDSD and I am asking for you ALL to show your support and raise awareness for Down syndrome. ***

Here are 2 ways that YOU can do this:

1. Show support by wearing your craziest socks you own. If you don't own crazy socks...mismatch them or wear 3 socks for 3 chromosomes.  Wear them March 21st, take a picture and tag me on Facebook or Instagram... I wanna see you rockin your socks!!

2. I am asking all of you to take the 3/21 PLEDGE. Ruby's Rainbow is an awesome organization that grants scholarships to adults with Down syndrome who are seeking post-secondary education. Their goal is to create awareness of the capabilities of these individuals and help them achieve their dreams of higher education.  You can read more about them here.

-The pledge is that you donate just $21 (to Ruby's Rainbow)
-To be kind and compassionate to people of all abilities
-Ask just 3 of your friends to take the pledge with you and donate $21 to this organization.  I just took the pledge...who else is with me? Let me know when you take the pledge and I will send you a Down syndrome awareness rubber bracelet.

If you want to see Ruby's Rainbow in action, and see some of the young adults that they have helped, check out this article from Kelle Hampton's blog, Enjoying the Small Things.  Kelle went to Western Carolina University and visited two of Ruby's Rainbow scholarship recipients.  Kelle is also the author of the book, Bloom. This was the first book I read after Gavin's diagnosis and it is such an amazing book...it gave me so much hope, something to look forward to.


I hope you all take the pledge, and rock your socks on Saturday! Can't wait to see them!

Much love,
XOXO

Happy Down Syndrome Awareness Month!

“October is Down Syndrome Awareness Month, a chance to spread awareness.  During the month of October, we celebrate people with Down syndrome and make people aware of our abilities and accomplishments.  It’s not about celebrating disabilities, it’s about celebrating abilities.” Chris Burke

October is Down Syndrome Awareness Month, and let me just say that this time last year I don't think I even knew about it being in the month of October. I probably wasn't even aware.  See, when you aren't directly affected by something then you have a tendency to overlook it. This was the case with many things in my world. Not that I didn't care, or didn't want to, it was just that I was not educated or aware of certain things going on around me everyday.  That is one thing I can say I definitely learned in the last 10 months from having a son with DS.  Every day I find out something knew about children with special needs and I want to be aware of what they are going through and how I can help...   I am not ignorant anymore, and I don't live under a rock, in my little bubble where my life is "perfect" and "normal".  God rocked my boat 10 months ago, and I thought it was the end of the world. But I am here to tell you that everyday it gets better, and I am finally in a place where I am not sad anymore. It may have seemed like the end, but it was just the beginning to something beautiful and different. Something that I wasn't familiar with, but in time i've seen that Gavin is truly a blessing, not a hindrance.  I am so unbelievably grateful for this little boy.

Down syndrome is NOT a disease, its not a death sentence, and its certainly NOT a negative thing! DS is not the problem, its our society and how some people view it.... yes, most of these children do things at a slower pace physically and cognitively but they still do them! They are just like any of us, and deserve love just the same.

I want to personally challenge all of you to spread awareness this month... (well every month, but especially this one)... in ALL or the following 3 ways (or at least one):

1. Carry out a random act of kindness- everyday this month, do something kind for someone else...if can be anything you want as long as its from the heart, and there are no stipulations.

2. Share information with friends, family and your community- Here is some great information from The National Down Syndrome Society  and also some myths and facts.

3. Participate in a Down syndrome walk. Our local Buddy Walk is this coming Sunday and we would love to have you join our team, however if you do not live locally, you can reach out to your local Down syndrome association and find out when their walk is. If that doesn't sound like your cup of tea, consider donating to an organization.  If you would like to join our team and walk with us, or donate you can do so here.  To find a local Down syndrome organization near you, please visit this site.

I would like to share this video with you, in hopes that you will all share it to. Thank You.

Update

Its been a little while since I have given an update on Gavin.  He is now 6 1/2 months and seems to be doing great! We've had a ton of doctor appointments and therapies over the last week.

At his 6 month well baby check he weighed in at 18lbs, and 26 inches.  He is approximately in the 50%, which his pediatrician said is great. They usually go by a different weight and height chart in children with Down syndrome.


 He is progressing in his physical therapy and getting a little stronger everyday.  He has been sitting by himself for a short time but was reminded that hes actually only "propping" himself with his arms like a tripod. OH WELL! in my book, he is still sitting by himself.. and we are going to continue to praise him for the things that other people take for granted.  Before I know it he will be crawling so I am ok with him taking his time on reaching some of these goals.

At his ENT appointment, I was once again annoyed because I feel like I constantly get the run around there. No one seems to know anything and I see a different doctor or PA every time I go. They do a ton of different hearing tests but never know anything. Every time it comes back "inconclusive" So why am I going at this moment in time???? After voicing my concern, the doctor suggested we put him under anesthesia and clean out any build up in his extra narrow ear canals.  They cannot do this while he is awake because for one it will severely irritate him and also so that he will hold still.  Once everything is clear they will be able to see his ear drum and go ahead and put his tubes in.  Once tubes are in, and fluid is drained they will THEN do the ABR test AGAIN to determine how well or how little he is able to hear.  I know tubes are a pretty routine surgery that everyone tells me is no big deal however he will be only be 7 months and he will be under an hour and a half. With just getting tubes you are in and out in 15 min, but with cleaning and testing him afterwards he will be under a lot longer.  None of my boys have ever had to be put under and so I will admit that this makes me a little nervous. At least we will know whats going on with his hearing finally! So..... July 1st is the big day. Please keep G in your prayers.
Thanks!

Friday Favorites

Every Friday I am going to attempt to pick out some of my favorite things that happened the past week or just some of my favorite shots and share them with you all.

So this past week, Gavin started sitting on his own AND rolling from his back to stomach. Yay Gav!

Oh! and he turned 6 months old too!

Cutest little baby shoe I have ever seen (again I am obsessed with baby feet)

Lukas, of course, got into many things this week....

Brown sugar!!!! and Yes! It was all over the place!

My mascara... all over the wall too!

Zachary graduated from preschool and will be starting kindergarten next year :(

so proud!

His teachers <3

Break dancing downtown for the Spoletto Festival was a lot of fun. Lukas did an awesome job and kind of stole the show. 

Check out the real dancers, scoping him out

Get it boy!

Watching his big brother..so sweet!

Beautiful Charleston day, watching the boats

Also, if you didn't know, my friend and I started a business a couple years ago setting up, decorating, and coordinating weddings. If you would like to check out what we do, and some of our other weddings you can click here. 

Here are some photos that I took from the wedding last weekend

Enjoy your weekend!!

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!

**** Be sure to enter your email in the box at the top of the page and subscribe so that you can stay connected. You will also be notified when I publish a new post****

The Day Our Lives Changed Forever

Thinking back to the time that we were waiting on the results of the test is very upsetting to me.  So many emotions mixed with lack of sleep is not the best combo.  Most of what I remember was lots of tears and lots of researching.  I probably "googled" most of the day, everyday.  We played the whole "he's got it, no he doesn't, yes he does, no he doesn't" game the entire week.  I actually remember being very upset because I feel like I was robbed.  I was robbed of the joy and happiness you feel when you first give birth.  I wasn't able to enjoy my brand new baby because every time I looked at him, all I could think was DOWN SYNDROME.  Since there are many signs of Down Syndrome, and because Gavin only had a few of those (small ears, small slanted eyes, brushfield spots in his eyes), it was difficult to say either way.  The doctors were not sure even sure one way or the other. There was one doctor who specializes in Down Syndrome at our ped's office who looked him over and said he was positive he DID NOT have it because his muscle tone is pretty good for an infant.  The only way of knowing 100% was this blood test we were waiting on.  All we could do was pray and pray and pray some more.  

It was a Friday, and I had been out shopping with my mom and Gavin, when I saw I had a voicemail. It was the pediatrician and she said she had the results.  I instantly felt sick and our shopping trip was cut short so we could rush home.  I called and left a message for her to call us back since she was with patients.  When the phone rang, and I saw the number, I threw the phone to Curtis and told him to answer because I just could not do it.  He went into the office and closed the door.  I sat in our living room shaking.  My heart was beating so loud I could hear it in my ears. My palms were sweaty and I felt like I was about to pass out.  I wanted so bad for him to come out of that office with a huge smile on his face and tell me that everything was fine, but he didn't.  After what seemed like an eternity, I opened the office door and there sat Curtis, all bent over with his head in his hands.  I knew right then and fell to the floor. "Why me? Why me God? Why did you choose me to have a child with a disability?" I felt like God was punishing for something.  Being only 29 years old when I became pregnant means that I had approximately 1 out of 1200 chances of having a child with down syndrome.  So yes.... I was very confused as to why I was chosen.  On top of all those feelings I felt like I was mourning. Did my baby die? NO!!! but to be completely honest, I was hurt and angry and I felt like I had actually lost my child.  I was mourning the loss of him.  My vision of this beautiful, healthy, "normal" baby was gone, poof, just like that.

I have learned so much from that day.  Is this what we had planned? No, but sometimes our plans are not God's plans and we have to accept that.  I've been struggling with this for awhile now but little by little I am understanding that Down Syndrome is not a bad thing, it's just different.  Our lives are not over...we are just taking another path.  I read a story that really clarified things for me and opened my eyes to understanding what this meant. It's called Welcome to Holland, by Emily Perl Kingsley and you can read it here:  http://www.ndss.org/Resources/New-Expectant-Parents/A-Parents-Perspective/#sthash.dXZyHwRN

Sometimes I get so caught up in the diagnosis that I forget to look at the big picture here.  Although he has this diagnosis, he is a beautiful, healthy baby boy, with no major health conditions. This is something that I am extremely grateful for. A little under half of children born with Down Syndrome have some sort of heart defect...some being so major they require open heart surgery.  A few days before Christmas we met with the cardiologist and Gavin had an EKG which showed that his heart was perfect.  This was the best Christmas present we could ever ask for.

Merry Christmas (a little late) from our family to yours

                                                                                

***

©1987 BY EMILY PERL KINGSLEY.

- See more at: http://www.ndss.org/Resources/New-Expectant-Parents/A-Parents-Perspective/#sthash.dXZyHwRN.dpuf

***

©1987 BY EMILY PERL KINGSLEY.

- See more at: http://www.ndss.org/Resources/New-Expectant-Parents/A-Parents-Perspective/#sthash.dXZyHwRN.dpuf

Gavin's Birth Story (Read first)

Let me start off by saying that I am not a woman that likes to be pregnant.  Did I hate being pregnant with my first two sons??? No, but I STRONGLY disliked it.  This last time I can honestly say that I was completely miserable. There were no serious life threatening complications, but to me they were close enough.  I had all the usual pregnancy symptoms: nausea, headaches, varicose veins, but on top of those I had severe pubic symphysis dysfunction(your pubic bone separates more than its supposed to) where I could barely walk.  I was borderline diabetic so I had to watch everything I ate (extremely hard to do, if you know how much I love sugar), and Gavin was in a breech position.  So after having two vaginal deliveries, I would be having a c-section with my last. My doctor suggested that I try a version. This is where they manually try to manipulate the baby from the outside, and try to turn him head down. Basically one doctor pushes and the other one pulls.  It feels like someone is ripping your insides out..no joke.  The version was successful and I was thrilled since the success rate is not very good.  I thought, finally,  something is going my way.

One week later I was induced, which was the longest week of my life since I was scared to let my body be in any other position except an upright one, so he wouldn't turn around again.  Finally it was go time and we were in the hospital at 6am starting the pitocin drip.  It ended up being a very emotional day. His heart rate kept dropping and then it would stabilize and then drop again. The nurse would flip me onto my side in hopes that I was just lying on his umbilical cord. Then it would drop suddenly again and they would turn off the pitocin and give him a break. I had to wear an oxygen mask to hopefully give him some more oxygen inside.  It felt like 1 step forward and 2 back. It was very scary not knowing if at any time I would have to be rushed away for an emergency c-section. This continued all day.  Even after my water broke, the little booger was still so far up and would not drop down! My doctor checked and said his head was lodged and stuck on my pubic bone and that was the reason for the hold up. She said we should try and push to see if he would dis-lodge. 2 pushes later, he shot out.

The first time they laid him up on top of me I had a very strange feeling. This wasn't my baby. Not the baby I imagined!  He was extremely swollen, one side of his face looked like someone had beat him it was purple and blue. His forehead protruded and his face was so swollen that I could barely see his eyes.  I kept asking over and over again, "is there something wrong with him?? He is not crying!" But they kept reassuring me that everything was fine... he was in a face up presentation when he came out so it was normal to look that way. Besides the swelling he was perfectly healthy.

Here he is all red and swollen

                                                     

His forehead was protruding and extremely black and blue

                                       

This is my exhausted, worried, know something is wrong face

 And here he is Gavin Xavier Woods, weighing in at 7lbs 2 oz. 19.5 inches long

The next day his billirubin shot up pretty quickly and they wanted him under the lights for 24 hours. I was only able to try and nurse him for 30 minutes when they brought him to me every 3 hours. Under this demand it is almost impossible to feed a jaundiced, sleeping newborn.  This was very frustrating to me but I kept thinking to myself...tomorrow we will be going home. Tomorrow comes (Thanksgiving Day) and no turkey for me :( The doc wants us to stay one more night.  The next day is sort of a blur to me.... We were waiting to be discharged and in walks the pediatrician to tell us that his levels had dropped and that we were free to go. We were so ready to go home and see our other boys, when all of a sudden she continues with.... "However, I think you should consider having Gavin tested. He is showing a few signs of Down Syndrome."  My heart drops....Can you repeat that? She continues.. "I am about 50/50 and leaning more towards 75% that he has it." The tears started flowing down my face.  I had no words (which is rare for me)...all I could do was cry.  I felt myself become anxious and worrisome. I wanted to throw up.  She came over patted me on my shoulder and said that she knows it must be hard and would I like something to calm me down. "Yes Please!" I do not remember a lot after this.  My sisters and nieces came to bring me home and to just be there with me. The doctor said they would send out a blood sample from his umbilical cord and we should here back within 10 days. That was that...we left not knowing what was going on or what we should be feeling or what was wrong/if anything, with our son.

                                          This was the day we came home from the hospital

The next 10 days were the longest, confusing, most terrifying days of our lives.....