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! |
 |
| 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
No comments:
Post a Comment