Up syndrome

I know as a friend or family member of someone else who had a baby with any problems, I'd always want to know how they were doing. Some people inquire, and some friends and family hold back. I know I'd want to ask but may hesitate in fear of upsetting someone or bringing up a tough topic. So, for all of you wondering...

We're doing quite well. Andre and I are very optimistic and sticking close through any bumps in the road. I am the one that goes to the appointments and therapies and hear the easy and/or hard news so I may get discouraged from time to time. I call Andre in tears completely worried about his/our future and he always picks me up. He'll remind me that holidays are going to be so fun, forever, that Clara will be humble and loved like no other sibling, that he'll be happy and healthy and that's all we could ever ask for, for our children. Other times I just cry, let out a good cry, often with Everett in my arms...then I look at him in the eyes and life seems good again.  Right now life is pretty simple, he is a perfect little baby boy that does require some extra help with therapy. We're only going to PT once a week since he's doing so great reaching all of his milestones on time so far.Eventually we'll have PT, OT, and speech. His low tone is evident but doesn't really hold him back from anything right yet. It just makes him extra snuggly which I love of course. I went to speech therapy today. My doctor basically discouraged me from going since language doesn't start yet, but it was so helpful to get tips for him and eating solids. She also gave me tips on how to help build his muscle and mouth awareness to prep for language which was why I wanted to go. I get really pissed when the doctor makes me feel like I'm doing something unnecessarily when clearly I just want to help Everett the best I can, I'm thinking of switching pediatricians. We still have a developmental specialist that comes into the home once a week when I'm at work and Melissa our babysitter is here to do the "routine". That hour a week consists of PT, OT, speech and some cognitive development exercises. I hate that I miss it myself but Melissa is great and takes good notes and sends me pictures. I do feel bad that Everett gets so much more attention than Clara at times. She is so good and loves her brother so much but I want to make sure she never feels forgotten. She plays independently so well and always wants brother to come play too, soon he'll be chasing her around. Merrissa and I are looking to get Ajae and her into dance. Clara is always being dragged around to Everett's appointments, and she's so good about it. All of his therapists love her which helps, they make her feel special. I'm looking forward to taking her to something special. These days are the easy days, soon we'll have so many more therapies. I don't mind the busy life at all, I just want a good balance for both my babies.

I do get caught up thinking about the future sometimes and become overwhelmed. I don't ever notice if people look at him and think anything, I'm too focused on he and Clara to even pay attention. That is something that I don't think will bother me, not at this point anyway. I can only imagine mama bear coming out to attack if I feel he is getting picked on. I do understand others may be curious and that would never bother me. I think he is the most adorable thing on the planet so that's all that matters to me. Thankfully in my old age I don't care what others think of me or my family, as long as I think we're perfect just the way we are, that's all that matters. The physical features about Down syndrome that used to "bother" me are now the things I love most about him. He is so cute when I look at him, he melts my heart. I did envision a mini Andre. I had a picture of Andre as a little tyke in my wallet since we started dating. When I found out we were having a boy I couldn't wait to see that face knowing how strong his Colombian genes were, I knew he'd look pretty close. When mourning the child I thought I was going to have, that was a big part of it which seems superficial, and as ashamed as I am to admit that, it was real but I've let it go. Everett is handsome and perfect, and mine. Clara calls him everything I call him, one of my names is, "Handsome boy!" It sounds so sweet coming out of her mouth, I need to catch her and record it somehow. She'll saw, "Awe, hi handsome boy!"

He isn't sleeping well, but doing better. He used to be up every 45 minutes all night, and he still struggles sleeping during the day taking 15 to 30 minute naps. We're gaining. His adeniods being removed have helped. Since I worry less about his breathing and his lack of breath isn't waking him so much we've let him cry himself to sleep some over this break and he's been doing better with learning to self soothe. There are moments I can't handle his sad cry and gobble him up and promise never to do it again, but all in all I can tell it helps him, which helps mama and dada too! This house needs sleep!! We have a sleep study this Saturday. We won't get results until December 9th though. :/ He may have a form of sleep apnea, many with Down syndrome do, we'll see. I think he just needs routine, Clara thrives off of routine and Everett has lacked such a lifestyle since his appointments and therapies don't really allow for any such thing. I'll make sure if he is capable of sleeping better that we get one in place and we'll have to work around therapy sessions. I worry about his growth and development so much when he doesn't sleep, that's when we do our best growing, when we're sleeping, and this poor baby doesn't rest. We also had a follow up ENT that I canceled since the doc said she'd wait until we got our results from the sleep study. We went to GI and they offered to do another scope to see how bad his reflux was and get more accurate read on what his body is dealing with with reflux. I don't want him being put under again, he has improved slightly with sitting up now. Clara's got much better around 6 months so I'm hoping he follows in her footsteps and he has more relief soon. I don't want to put him through anything else for now, we're making slow gains so I'll hope that continues. They offered more meds for his reflux and constipation but I'm going to hold off on it all until he takes steps back, if he does. She gave me the green light to try dairy to see how it goes. I have a tummy ache today from it, I can tell, my IBS was happier without it. The problem is, dairy is my favorite food group!!!!! Clearly I do better without it too, so I'm going to try and stick with the diet for my own personal reasons, at least keep it to yogurt and creamer for my coffee. I got a latte today from Starbucks to celebrate, there's no price tag one can put on that...SO dang good.

I can't believe this little man is going to be 6 months. Where does the time go?! He makes our family so perfectly complete. I have big dreams for this little boy but remind myself to take it one day at a time. I feel so lucky to have him, when I have my moments of worry all I have to do is look at his precious face and I trust he'll be the one that makes it all okay, he already does. This little baby has taught me so much about life already. This "situation" for lack of a better word, has brought so much clarity to me about what life is really about and keeps priorities in tact. I couldn't ask for more.

I was told over and over in the hospital that situations such as these tear marriages apart. I know we've a long road ahead but I'm proud to say it's only brought our family closer. Thank you Andre for being my rock and my ear and picking me up when I get down.

Fun fact: John Langston Down basically identified Down syndrome in 1866, ,hence the name. My grandfather's name was John Lang and Everett was born one day after his bday, we thought for sure he was going to be born on his bday since I was in labor at 7am.

These are some of the videos that give me hope:

http://themighty.com/2015/11/families-make-emotional-video-for-new-parents-of-kids-with-down-syndrome/ - - thanks Mary! This video was something I wished I had when he was first born. I wanted someone to tell me it was going to be okay, that's all I wanted, someone with a child with Down syndrome to say, "Stop worrying, it'll be okay, it'll even be great!" This video gives me peace.

I'm searching for the one that I first saw that I love...because there is this little boy who renamed it "up syndrome" since he's always happy.Everett just woke up and I don't have time to find it, FYI he just slept for 1.5 hours mid-day, YIPPEE!!!!!!!!!


This is a program that I hope we can use to help Everett.
https://www.youtube.com/watch?v=LGj47A14naM