We went out for lunch and got Andre some sushi!! We were on the water and caught an early afternoon buzz, danced a little and it was great. Perfect!
Third of July. Happy Birthday Grammy! We went to adventure island during the day with the Fegers, super fun. On our way I received news from Everett's blood work that his white blood count was low. His platelets, red blood cells and thyroid were all good. HE spiked a fever that afternoon after we got home which made me feel a tad better since I was hoping his drop in cells was something he had been fighting and not Leukemia which is why we have his blood checked every six months, and also to check thyroid. The doctor said we'd follow up in a few months. I took him in over the weekend and he was still feverish but no other symptoms until he broke out in a rash. The doctor said that it was from whatever virus he has been fighting. The rash lasted two days and then he has been back to normal. Fingers crossed really tight it was just that. I asked if I could take him back sooner since I knew I'd be worried about it and she said sure. I am going to take him tomorrow which will put us 4 weeks since his first draw. His white blood cell count was just over 3,000 and it's usually around 6k and last draw was 7k. Below five is a concern.
Needless to say, we stayed home and rested while Andre met the Crews and the Fegers at the beach like we normally do for the 4th since there are no fireworks on the 4th on the beach and we thought it would be less crowded. So, Clara pretty much thought the third was the fourth and on the fourth we all went to bed early because we were all pretty run down.
Adventure Island - Everett wasn't acting himself Tues-Thursday and his draw was on Wednesday and he was perfect all day Friday minus getting the fever late afternoon. So, clearly something was up. I should know when he is cranky that he must be sick because he never acts that off unless something serious is up. I cannot wait for the day he can tell me what his body is feeling. I feel terrible he probably had pain and I didn't give him any tylenol until he spiked a fever when probably his painful symptoms were gone. So sorry Bubby Boy!
Movie time
I love these pics of our beautiful home
So, we have been looking for houses closer to Madeira Beach where the kids will be through middle school. We are so far, it's worth moving again. :( I love our neighbors and our neighborhood, this was a tough call but it just makes sense. The market is perfect for home buying and our house needs some major upgrades with a roof and resurfacing of the pool, it just kind of all lined up. On June 29th we went to look at a house we were interested in. We had been looking for months at this point and there was nothing that was too exciting. It was a complete let down. It seems like everything costs so much and we love our home so much it's hard to find something we like better. That night, disappointed in our viewing, I started hunting and a beautiful home popped up RIGHT by the school. We called our realtor that night, had him set up a showing for first thing in the morning and saw it Saturday am. In the past three weeks houses we have been eyeballing have been FLYING off the market. Like within 24 hours, pending. It's been insane. So, we knew we needed to make a decision quick. We put in an offer that afternoon. It's thrilling and scary all at the same time. They accepted. We put our house on the market TWO days later, talk about getting our crapola in order quick! Put our house on the market Tuesday night, had 15 showings and 8 offers within a 24 hour period. Insane. Most offers over asking price and many well over, one offer was 71k over asking which it wouldn't appraise for, but so crazy. We took one of a few cash deals we thought was our best bet and here were are!! Closing tomorrow, July 29th and moving in this weekend. This summer has been crazy. So, this picture below is of Clara and her friend Miley. I had to be out of the house all day for the showings and we had two therapy sessions, one at 8am and one at 5pm. We went to a splash park and then I asked Clara if she wanted to see Miley since she is always up for play dates and her mom was super flexible and said to drop her off. I drove around the neighborhood trying to get Everett to sleep and nope, but it was worth a try. Of course he fell asleep later on our way to therapy. Then we grabbed some Mexican food by our house and a margarita and finally called all showings off by 7pm. Andre took the kids in the pool while I lysoled every inch of our house and we all crashed. CRAZY times.
These two cuties have not seen each other since March. Can you tell they are happy to see each other?
Our new home doesn't have a pool. We have plans to put one in, so we are soaking up all we can while we still have one. We will be back to school anyway so our time in the pool would be limited to weekends anyway and we are five minutes to the beach so the gulf will have to do for a bit!
Splash pad
They both loved it. For the FIRST time in history, I could sit down and watch my kids. It's not that I like to do that, I prefer to play with them. However, not being able to take my eyes off of Everett for safety reasons keeps me close by his side. This splash park had nothing to climb or fall of, so I sat, and it felt amazing. Usually moms can let their kids go play and let them tumble by three, I've been ready for this moment and I didn't sit for long but it just felt good to be able to.
"See Papa" - Everett stares at pictures and rewatches videos more than I can count. Every day he says he wants to see papa, truck (bc we usually take the truck down) and says to open the door. This little boy is obsessed with papa.
4th of July Fegers gathering at our pad, last cookout in this beautiful oasis that Andre has created, once again blooming just in time for us to leave. Darn it. Clara loving her burger.
Independence day
Someone's sleepy
One day after Andre went to work I heard Everett typing away and saying, "THERE" - he had daddy's house sandals on, his glasses and was typing away.
I had an assistant for a few minutes, then we drew on boxes, then after a day, they were over it...but mama still had a lot to go!
My loves
Everett dressed up for dinner.
Fourth of July - last go at the dog track, thank goodness it's closing down. I made my vote on that one! However, this is hopefully something that is a thing of the past and the kids can say they once saw a race (and felt sad for the doggies).
I stayed home with a feverish E and got him a good nap!
Sweet boy. Yes, he loves all his 'freeens' in there with him. I still have to rock him for nap, which I love. It takes 10 minutes for him to fall asleep but he sleeps for 1-2 hours, usually around 1.5. At night I lay him down and he is asleep before I close the door, seriously, he never moves. I see him in the monitor and he is still and in the same position. I hope our move doesn't throw things off!
I love this cute girl so much.
We had a play date with our friend Finn!! These cuties are so adorable.
Back to the third.
I wish we could have been there, I hate missing these moments. I hate Bubby missing these moments.
Messy face and the rash.
Kiwi kit time!!!!!!!!!!
I love their love.
Being daddy!
Picked up Miley for a beach day!
Crazy. I'm going to miss these streets lined with Oaks, it's my favorite part.
Taking advantage of time with our neighbors before we're so far, I'm hoping we still make time to see each other. This is Eva. She is next door to us. She and Clara have been playing almost daily. When I have to take Everett to therapy in the afternoon Clara goes to her house. The trading has been amazing and the girls have so much fun. We are going to miss our neighbors so much.
Trying to find things to get him on his knees, something he needs to practice. Also working his arms playing upright instead of using a table. I try so hard to incorporate as much as I can where he doesn't yell at me. I'm currently fighting tooth and nail for therapies. They end next week. On his new insurance he has 60 days and 24 visits. Um, forever. Yes. That's what they granted him. Just because he's five doesn't mean he doesn't have Down syndrome. I've been on the phone for over 5 hours this week fighting insurance. I hate to admit I was in tears at one point and raising my voice at someone else. I will never understand why insurance and authorization for therapies for children who have special needs (or even not special needs) isn't a given, I just. Don't. Get. It. I'll likely have to switch his insurance and try something else but one doesn't understand the undertaking that must go on with that kind of switch. New evals, waiting for more auth, WASTED time when he could be learning and making gains. All the grants and CMS and "help" that is out there seems to be for families who don't want to work and pop out kid after kid and be broke, they get help. I've applied for two grants, one scholarship and CMS and, nope. We "make too much". Well, just because my husband and I work hard and try to make a good living doesn't mean we have thousands extra a month for therapies. I'll keep fighting for you boy, mama will get it figured out. Eventually!!! Okay, off my soap box.
Stacking boxes, check.
More fun with friends.
My king.
So, not only are these two adorable, but I must gloat about my girl. She is the BEST with them. She played with them both the entire time. She helped Finn with his online therapy while Everett napped. She understands how to play with these two and how to help them. She thoroughly enjoys it and I cannot wait to see what she grows up to be and if she happens to be involved in teaching or helping those with special needs. She is darn good at it. They are hiding from her for hide and seek and she walked around saying where she was looking (I didn't tell her to do that) so they would stay under there, knowing if they knew she was getting close they would sit tight. She has more good ideas than I do to help her boy and she never leaves him out, she is always thinking about him and if she gets something "special" or unique how she can share that item or experience with him.
Clara trying to help Finn do his therapy. He eventually did it with her. Finn's awesome mom Kathy, she is a rock star special needs mom. Our boys are good at opposite things and we bounce ideas off of one another, truly a special relationship to have. We met them right after we left the NICU and I made us go on a "Special Needs Outing" - some flier I got, I wanted to get us involved in the community and meet other families and I pushed Andre so hard to go. It was kind of a bust, just not a good turn out and in the middle of nowhere, far from where we lived and I shut my finger in the car door right when we got there. On a positive note, we decided to grab a hot dog before we left and Finn and his family were serving the hot dogs. Finn is 6 months older than Everett and that's where this friendship started. I've stayed in touch with them and they are very active in the DS community. She has a daughter Ava who is going into 4th grade I think and Clara loves to play with her but she had a play date on this particular day so we missed her. Hopefully one day they can have a relationship and share their feelings with one another about what it's like having a sibling with Down syndrome. I'm very thankful to have them in our lives.
The St. Pete Pier opened up! It's super cool. Darren and Corrie are selling their planks here now, so awesome! They are doing so well and their planks are super cool!
I don't know if you noticed his hips in the picture before but they didn't look so hot. He has a hard time supporting his body. I asked his PT where I could buy these "hip helpers" he used to wear them when he was an infant and we were trying to keep his legs together for sitting and such. It just so happens she had a pair in her desk drawer. So, in moments like this he wears these little spandex to keep his hips and knees in line.
We found a dead seahorse. Sad, but cool to see.
It was a rough day out there, they got pummeled and LOVED every second.
When Clara hacks into my phone and goes on Snapchat. JK, the girl doesn't hack anything. In fact she is so good about asking to do every little thing it makes me so proud. For example, when she is outside with her cousins and letting her sun block soak in, she tells me before she gets in the pool. Then she comes out and tells me when she is going in the deep end. I'm watching from the kitchen inside always, but she knows how much I like to know her whereabouts and I hope when she is older she calls and texts every five minutes to let me know where she is. I cannot ever imagine her out of my sight other than school, time....freeze please!
Taught her how to properly fold a box like the cookie route taught me, then taping the box, brings back memories.
It was SO hot at the pier. Thankfully Gulf Coast Planks had a fan!
Holding Nunu like a baby, I can't, so cute.
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