Surgery day (details updated 7/1)

I love how happy he can be at 4:45 in the morning!

All of the nurses remember him from last time! They all run to get each other so that everybody can say hi!

This is his new silly face he loves to make at himself. 

Bye-bye baby. This part is the worst. It'll never get easy. When they take his sweet face away and I don't know if he's scared (I'm assuming he is), crying, in pain, will things go right? or wrong? Everything runs through my head. 

After surgery. They doped him up on pain meds, not considering anesthesia and low muscle tone. He didn't have the strength to cough up the mucus so he turned blue and I about fainted. I refused to put him down and some angry nurse snatched him from me. It took about 20 minutes for them to get a breathing treatment and I heard them calling in a panic for the respiratory unit, which never came, lovely. The nice nurse brought me an apple juice which helped me a lot, I could tell he was so confused and in so much pain so he just refused to cough. He was very limp so I know he probably didn't have the strength to do it either. Seeing your children in this position is the worst. 

After we both "recovered" - poor bubby

He kept wanting to play peek-a-boo but would fall asleep with Elmo against his face. 

Sweet boy. I thought we were out of the woods here, little did I know we had just entered. 

Let the torture begin. IV #1 busted. He already had two holes in him where they had attempted before surgery, his options are always limited. :/ I held him with all my might for 15 minutes before they could get #4 in, his arms are so poked and bruised, my entire body crumbles when I think of my baby in pain. 

Surgery #6 - tomorrow - 6/15/17

In 6 short hours I'll be preparing to take my little man to surgery for the 6th time.One would think it would get easier, but it's never easy to hand over my little man to strangers. I'm extra nervous this time since I've been home for the last few weeks he is getting attached to me and doesn't like when I pass him off and leave.

This time tonsils are the issue that have been causing him severe sleep apnea. It's only a ten minute surgery, but to me, surgery is scary no matter how long the process. I can't help but worry about him being put under and the complications that can come from that, the actual surgery, and my biggest fear this time is the recovery. I read another Down syndrome mom's post inquiring feedback because her daughter was struggling and there were many mixed reviews. Some are sleeping worse, some had other issues, but over all I'd say the responses were positive. Most indicated better sleep, some even mentioned better eating/drinking, speaking and that would make a big difference if it could impact ALL those areas. Two of about twenty responses mentioned it helping hearing, I'm imagining it helping allow sinus issues to drain which 100% Everett's issues with his ears. Could you imagine if this surgery just solved all our problems?!?!?!?!!?  I'll be sad if his cute little voice changes forever, that seemed to be the case for about 50% of those that have had the surgery, but if it means we find improvement somewhere else, especially sleep, I'm in.

He had his adenoids out already, he was about 6 months old and was only sleeping 20 minutes at a time for MONTHS so, I'm hoping this has a big impact on his sleep in a very positive way and makes this torture worth it. His adenoids could have grown back by this time, it happens under 3 years old and it's likely since he had his out so young. They didn't do an x-ray to check since they were going to remove tonsils anyway, but I won't be surprised if they are there...we will find out soon. I remember the pain of tonsils out, Bran had hers done and I know it's BRUTAL so I worry for my little man immensely. We could potentially be staying in the hospital for 24-ish hours or two or more weeks depending on how Everett will drink. My hope is if we're stuck in the hospital, we at least make it out of St. Josephs in Tampa and can go back if he becomes dehydrated in St. Pete so we can avoid the hike to and from Tampa. I hate that we lost our old ENT since she didn't take our insurance after we changed so that's why we now have to go to Tampa.

So, if you're reading this, please send a positive vibe our way and hope that our little man isn't in too much pain, everything goes smooth and we get HOME, FAST! He is the first one in tomorrow so we leave the house by 5 latest and his surgery is at 7:30 and done ten minutes later. I really hope that the amount of surgeries decreases soon for this little man, it's getting harder the older he gets!

Summer Shenanigans

We cut Everett's hair again, I did a great job using the scissors on the top last time that I got a bit too confident and butchered it this time, so we had to buzz the whole thing. Poor bubs, I really want to take you to have it done but daddy says no. 

I'm going to start with pants are a waste of our time, especially in the summertime, so excuse the fact that neither child wears them often. She is posing next to the owl she painted. 

I get to love on and hold my babies so much more, I'm in heaven putting them down for nap time and snuggling them both to sleep. Bad habit, maybe. Do I care, nope.

Um, can ya get any cuter than this?!?!? Can't wait to meet this little man. 

Sissy took it upon herself to bathe her bubby. She did such a great job. I took a video but got a bit too much footage, darn! 

We were walking out the door on a day we KNEW was going to be rainy to go to the indoor park, but it started to downpour the moment we were about to leave and we were cutting it short on time with therapy so we did science at home instead. I have so much trouble dividing my time between my cuties it drives me crazy. I spend an hour and fifteen minutes doing science with Clara while Everett played by himself. He was so good, he would play alone all day, he'd probably prefer it since he's constantly working with adults. I feel guilty no matter who I am paying attention to, but I really enjoy these times with Clara. 

Slime time 

Look Bubby! 

Trying to get him to touch it, he knew better, he hates these textures. 

After the rain, she thought there might be butterflies back out flying...great thought sis! 

Walk at Seminole Park 

Came across a snapping turtle. 

Clara went to spend the day with cousins while I took Everett for his pre-op. Thank you so much Tiffany, it was, again, 5.5 hours of nonsense. Steven's new bird likes Clara. 

Clara's favorite book at the time, "Beard Baby"

They have been playing with one another quite a bit. I know Clara would love to interact at the same level more, when she is around other typical kids Everett's age she is running around, playing hide and seek and it makes me sad, for them both. Just as he is a special little man, she is a special sissy and I don't give her as much credit as she deserves for her patience. I know she doesn't know any better right now, but she loves him so much and I think will love him even more when she understands. 

Dad's outside pics adventure, she stepped up her game with the bike, goggles, and Nuni

She woke up one morning, told her dada she needed to hurry and get a picture of Nuni, she ran down the stairs and demanded this picture, first thing.She likes the faces she makes. 

Their reflection... LOVE

Close up on her subject.

Back to her adventure 

Indoor gym 

Silliness 

Clara watched a portion of Nemo since she got her new suit. So cozy in her room. 

Picking a bouquet 

She loves em

This is the second time Kristin's struggling school was highlighted this year, she has been in the paper TWO times! So cool! 

We had another play date with our DS friends at "We rock the spectrum" a place that accepts all kids no matter their issues. I think that theory exists thinking most of kids with autism but it's a great place for every kid. Clara and Everett BOTH love it. 

"Awe, mama, look at my kitty, isn't she so cute? Take a picture of her."

"Another one!"