Everly's Journey with Prader Willi Syndrome

So it's been forever since I've posted. I guess life, being a single mom to the best girls ever, and being mentally and completely emotionally, and definitely physically exhausted has all played a huge part in my not keeping up with my page. I promise to do a complete update on my sweet Everly within this next week. Until then.... have a great 4th!!

So it's been quite some time since my last post. This past year has had its moments. Everly's weight gain has gotten out of control. I knw we're doing our best but apparently our best isn't good enough. If anyone has any meal suggestions that are high protein low carb I'm all ears! It's frustrating because I knw what needs to be done. I knw we all need to be healthy and eat right!! I am frustrated. i am exhausted, mentally, emotionally, physically.. And being depressed, stressed, and anxious doesn't help our lives at all. Lord give me strength as I begun this year on a positive healthy note for all of us!!!

As I sit here tonight, listening to the snoring and loud mouth breathing, i have to step back and remember how truly blessed i am. See, today is my birthday. I turned 42yo. Yes, I started pretty late in life having children. Although these last few years have been extremely rough, I'd never change a thing. I'm not a perfect mother. I'm loud, I yell, I cry, I give up, I get back up, and do it all over again. I'm stressed, depressed, exhausted mentally, emotionally, and physically. I'm a single mother. But, I am part of a wonderful co-parenting family. One day is wonderful and the next day sucks! But I am grateful. Grateful, for two beautiful girls, that I LOVE with every breath I take. Life is hard, life is messy. No one is perfect. we just have make sure we cherish every single moment.

Just some pictures of this past year... Her dramatic weight gain has been our biggest struggle! But as u can see, she loves her sister and is such an AMAZING girl!!

So, here's a hard reality of , even though u try ur hardest to do everything right, they will still gain weight.. Being EVEN more vigilant than ever, is how we have to roll...

My goodness how life gets so busy!! I have not forgotten my page, I'll be back tonight during my insomnia to post pics and struggles of We've had some great progress but also some setbacks.. Stay tuned!!

Aaand here we are.. O2 sats @ 98% HR 141... Night time is usually our hardest. So I'm hoping for a cheerful snotty baby in the morning since this momma has to work.. And I always set my clock at 30 minutes fast so don't let that time fool u..

So here it is... 1118pm.. Everly is extremely congested. This is the down side to Prader Willi Syndrome. Their immune system is compromised and they aren't strong enough physically to cough up the crud that drains from their sinuses thus, causing them to have respiratory issues. Tonight is the first night with her being congested and uncomfortable it doesn't take very long for this minor cold to become something extreme! Prayers for my sweet pea that she can fight this without going to the hospital..

Today we had PT/OT at Mag Park in Gainesville. Big sister got to help.

These two are inseparable.. Madison is an awesome big sister!!!