Clara and Everett

Clara and Everett

Saturday, March 26, 2016

Surgery 3 - 25 "The Works"

Pre surgery...early and tired, but always happy!!! 







Everett had tubes put in. I'm not really sure if fluid is the problem with his hearing loss. Something tells me it's not, I don't know what, but just one of those mommy feelings, that I hope is wrong. I think you either have general hearing loss where you may need an aid, or maybe a processing delay. I know you hear and I know you hear well because you respond to very soft sounds. I think if you're occupied with anything else, it could be eating, playing, looking at something, or just tired, you don't respond. I think some of it is interest and development. You're a boy who doesn't care for multi-tasking and I like that about you. You have GREAT focus but you only focus on one thing at a time. Needless to say, tubes are our first option and if you still don't respond well during our next hearing test in a month, then we'll have to do a different study where you're sedated. :( Again. :( Let's hope for the best!

Anyway, surgery went well. There's nothing like having to hand over your baby for surgery though, I don't care if it's small or big, it's never easy. There's always that worry that something will go wrong. The things I envision are pretty bad, thankfully none came true. The eye doctor probed your eyes first. I'm sure you can see in his pictures, they're often watery and goopy since they don't drain well. It was supposed to clear up on its own by now and if not, they put a probe (tube) down his canal to open it up. She said it hurts and they usually do it in office with a bit of numbing agent. I didn't like the sounds of that so I begged her to come do it since he was getting tubes, thankfully she did! Next tubes, simple procedure with no rules in the bath or pool. She said she's good to let him go and do and if he ends up having reoccurring problems, then we'll discuss ear plugs. I don't see me allowing dada to dunk you in the pool as it is, I'll be so worried about your lungs and aspirating, I don't think I could handle the dunk anyway. The ENT removed your cyst so you have stitches on your neck. They also drew blood for your Leukemia check which needs to be done yearly since people with DS are at high risk. I've read and seen horror stories on facebook about drawing blood for that and it pooling in babies feet. So, since you were being poked and prodded I thought we'd do "the works!" We got in first since you're the youngest of the day. We were on our way by 5:45 am with surgery at 7:30, we had to go to Tampa so we didn't have to wait another month to do it. You were and always are a champ. Everyone who sets eyes on you falls in love with you. You're such a gentle soul I know when they take you away they want to snuggle you since you're so lovable which does calm me a bit, a slight bit. Post op you're fabulous. They had to intubate you...I hate that thought. I can't stand thinking about a tube down your throat, it just brings back such horrible memories. So, your voice was scratchy after but the nurse said you were an angel, normally babies are sad after and you were your silly self. Your eyes were bloody, mama didn't like that one bit. They bled a bit after and the nurse said you might cry blood. I told her you don't cry, so I don't have anything to worry about. That's how good you are all the time! I have to put drops in your ears and eyes, that you don't like. I can tell the drops sting your eyes and who likes liquid in their ears, not me! So, that's the "hard part" now. The eye dr said that you might be a candidate for a surgery down the road if this doesn't do the trick for good. They'd put a balloon in both eye canals to expand them so your eyes can drain better. I think we'll deal with gunk and wet eyes for a while and give your body a time to expand before we go jumping the gun on that one. You're not bothered by the goopy wetness of your eyes and it doens't impact your vision, so...we're good. We were home by 9:30 am! Crazy how fast it went.

You are such a champ Everett. You're so strong. You keep me strong with your strength. Thank you. I love you. I'm so very proud of you!






WDSD the first

Today is World Down Syndrome Day - 3-21. (In case the date doesn't make sense to you: 3 = 'tri'somy of the 21st chromosome.)  I wanted to order t-shirts, but I waited too long and was afraid they wouldn't show. Then I wanted to make them but we're packing and report cards are due and we're getting ready for company and when do I fit that in? I could have done it on my own but I really wanted to get Everett's foot print and I need Andre's help and by the time he gets home he has one hour before E starts winding down and he's been in the garage getting rid of everything we own! So, instead of wearing perfect t-shirts we snuggled. I tried to get the house picked up but Everett's second tooth is coming in and he wanted to snuggle, and so did I, so we did. I snuggled my babies, for three hours. First, with Clara while Everett slept. She and I read and talked and she finally fell asleep, about 10 minutes later as I start to doze, Bubs wakes up, never fails. Even though I'm always so tired, I'm so excited to see him and hold him. So I fed him and he slept for 2 hours on me for Clara's whole nap. Then we played. It was a perfect WDSD, nothing special, just doing what we love and being together. Every time I felt guilty about not being the "perfect" mom with the shirts and a day planned full of celebrating and spreading awareness, I reminded myself that's not really what I want, I just want to hold my babies while they're small. One day we'll do shirts and activities, not this year. 

I love you my sweet Everett. You're perfect for me, you make me whole. I love celebrating you, our own simple way.




Spring break has begun...




Who doesn't sit on the pot while watching cartoons in the am with their brother's shades on?



The life. 


Clara had to be taking out of the tub for splashing, she had to wipe up all her splashes. As you can see her toys were taken away too. :( I have to tend to Everett when I give them baths and she really doesn't mean to get water out of the tub but this time it was A LOT. She plays on the outside edge pouring  and misses and then started to splash big this time. Sissy! So these cute cheeks had to get to work cleaning up a mess! She did a darn good job making sure she got every spot. Apple, tree. 


Everett has a cyst here as you can see. This is the only time it has gotten this red. I took him to the pediatrician and she said to have it removed on 3/25 with the rest of "the works" he's having done. It usually just looks like a cluster of three tiny blisters and sometimes puffs up and sometimes they're flush against his skin. I don't know why it got irritated like this, it went back to "normal" after an hour.

"Normal" -- the ENT took it off even thought it was flat when we took him to get surgery. 

Daddy couldn't resits the suit and glasses and I know she needs this hat. I would never spend money on these things for a two year old but she really does wear them and take care of them! Crazy. 





The kids went to Doe and Michael who saved us last week when our normal babysitter got sick. Kingston was SO happy to have another boy around he gave him a kiss! It was the first time I could focus at work in a LONG time. 


9 month well visit.










 I love this one. 








Play date at aunt Rissa and AJae's, so fun! 




Aunt Rissa spoils us with fun things to do! 




Everett was sleeping...he likes to play with the girls. 





Andre and I both busted our asses for the last time, preparing for company. This is something we do with ease at this point but we never have the time to sit and enjoy our own yard. It's such a catch, in order to have this home you really need to work so hard to maintain it and there's no time to enjoy it. The dang paper trees make the yard and deck such a mess. I'm going to miss this, everything about it, even though we didn't kick our feet up enough. Now, we SHOULD have all the time we need to kick up our feet, I'll just be wishing this was where we were doing it. :(((


Nancy spoiling my kids, what's new?! Clara loves her dress, but we had a random cold snap so she kept her long sleeve on. Everett has an adorable bib for Easter you'll soon see! 


Clara walking Ellie - Kristin kept Clara while I took E to speech, THANK YOU! 

Colombian Family Visit

Andre's family from Colombia visited so we had the gang over. Leonardo and his family stayed with us, all five of them, it was wonderful. I have great regret not naming Everett, Leonardo. He was Maria's cousin. I'd change his name now if Andre would let me. We tossed the name around but it didn't stick. I feel like E would be a really cute Leo! Andre's family is so sweet. The kids had a blast playing. Clara LOVES having her cousins over and Everett was loved on the entire time of course. 






































































Watching Maria's video, Leonardo was in many pictures. He would hoot and holler when he saw himself...so funny. 














It was a nice "last hoorah" at our house. Tear. Many tears.