Our Weekend

Our girl has had a positively delightful weekend. She has been in the best mood, smiley and happy. We have visited with lots of family this weekend both mine and Chad's. The kids have had lots of cousins around and lots to do. It actually seems quiet here even with our 4 kids now that everyone has left to go back home.

Although it rained off and on here every day, we still managed to have a great time. We went bowling, played games, went swimming (in between thunderstorms), had several cookouts and visited with friends and family.

Here are a few pictures from our weekend.

SK taking it easy out on the back deck...



Grey and Emma Claire playing Candyland...



Cooper helping Grey bowl...



Bowen and Jacob...



We found out that Grey is quite the bowler...



Playing at the water park...



Sophie Kate and her cousin Emma Claire, those eyes remind me of a certain song lyric..."She's got eyes of the bluest sky."



and then one with their dolls...



We then attempted the impossible Sunday morning before church...a group picture...I think it turned out pretty good.



What a great start to our summer!

School's Out for Summer

School's out for summer...no, not forever just for summer. I just realized that I'm not scared of Alice Cooper anymore like I used to be after watching him on the American Idol Finale Wednesday night. By the way, I know I am like the last person out there who still watched AI this year but I did and I am not ashamed of it. It didn't matter enough to me to vote this year but I did TiVo it and watch it.

While we are on the subject of AI, Alice Cooper really wasn't that bad. It was the Bee Gees, Chicago and Joe Cocker that I thought were pretty sad. What I mean to say is that I loved all these guys at one point in my life but really, is there no one close to them that would speak the truth in love to them...just to let them know that this may not be the best choice for them at this time. I hate seeing all these guys get older. For me and for those who know me, I'm sure I don't even have to tell you who my favorite performer of the night was...wait for it...Poison front man Bret Micheals. That performance made the whole show, I love me some 80's hair bands.

Wow, I spent more time on that than I thought I would. We do have some things going on with SK right now involving her airway. She has tracheomalacia and always has, but here lately it has been worse. We have been talking about options with her ENT but there really aren't a lot of options when you are dealing with airway issues. Please pray for direction and wisdom for us in this area, it's a big deal and a big decision. We will be doing some testing over the summer and I will definitely keep y'all updated as I know more. I really want to keep this post light and airy so I will stop there.

School's out for summer. Let the lazy unscheduled mornings begin, followed by afternoons at the pool, along with family movie nights and backyard bonfires. I don't even want to think about August right now, I want to think about baseball games and riding bikes, playing games and having friends over, cookouts and time spent with family.

This is SK on summer vacation...



Grey and his friend Jacob getting their summer started...



Thanks for checking in on us, hope y'all have a great Memorial Day weekend.

SK's Stander

Before we had Sophie Kate, I would see the parents of special needs children and I would know that those parents took care of all those children's needs. I knew that they had to feed them, bathe them, dress them, etc. I knew that they probably had to take care of each and every one of their child's needs.

What I didn't know were all of the other things that went along with not being able to stand/walk. You gain bone density by weight bearing. So our kids bones tend to be more brittle than those of typical children. Also, the socket at the hip/leg joint (ball and socket joint) becomes deeper with weight bearing. Therefore our children are at a huge risk for that ball and socket joint to become dislocated b/c it is so shallow. We go every 6 months to get regular xrays of SK's hips so that her doctors can stay on top of this.

It is huge for these kids to weight bear to strengthen their bones and joints even if they are not capable to standing on their own. This is where SK's stander comes into play for her. It allows her to weight bear in a unique way that she wouldn't be able to experience otherwise. I know y'all have seen pictures of her in her stander before, but I have recently made a video of her in it.

I was talking to one of her therapist last week and we were discussing some the therapy things that were a priority for SK over the summer, since we wouldn't be going to therapy as regularly as we do during the school year. The stander was at the top of the list, so I will make it a priority for her over the summer. This will be something she will battle her entire life.

These standers cost a lot of money and we have been very fortunate to have had a loner stander from our Early Intervention group. The thing is we have to return it when SK turns 3, which will be November 3rd of this year. Thankfully,Trussville School System has one that SK will be able to use at school until we find another way to get one for home use.



As you can see from the video SK enjoys being in the stander, I'm sure she likes seeing her world from a different perspective. It's a continuous thing around here, there is always something that could be done. From feeding to stretching to standing to stimulating her vision to working on activating toys it can be around the clock if you let it. The trick is finding that balance. Her schedule has to be God led not mama led. I tend to push push push and I end up pushing the fun right out of our lives. When her schedule is God led then we are all much happier and content with things and being content with where you are and what you have is huge. It can only be truly obtained when God is in control, he's the only One that can satisfy what our soul longs for.

Thanks for checking in on us.

The beauty in a routine, common, ordinary kind of day

In anticipation of summer vacation, we are experiencing some wonderfully carefree afternoons, evenings and weekends. My children have that excitement in them that only comes from knowing that school is almost out for summer. SK knows that she is nearing the end of her regularly scheduled therapy visits as well...it's a fun time of year.

Our girl has been seizure free ever since we went up on her medication...praising the Lord for modern medicine here. It has been a good couple of weeks for her, thank you for your prayers concerning these seizures. On a different note, I mentioned a while back that we thought the Medicaid program had found a nurse for Sophie Kate...well, it hasn't quite worked out. We have been through 4 nurses since then and to say that they are not reliable is an understatement. So please pray for this situation, I know that God has the perfect nurse already picked out for SK...we just really really really want to meet her.

Back to the good stuff...we have had some good weeks lately. Our girl is smiling so we are smiling. She has changed my way of thinking so much. I have said before that she is a priority organizer and it is so true. The time we have on this earth is short and there is no guarantee of tomorrow. Sophie Kate makes me think of the frailty of life as well. Sure something could happen at any moment to any one of us, I get that, but I have felt the frailty of life and I have experienced the extreme realness of that when it comes to my daughter.

I don't mean to go down a dark road here, but it is genuine in this moment. I don't think I will ever look back on things and wish that I had taken SK to more therapy visits (no offense at all to our wonderful therapists, we love you guys). I don't want to wish away every moment I have with her and the boys. And by that I mean not being in the moment, looking forward/wishing for the next vacation or focusing too much on getting through a certain appointment or waiting/wishing for the end of school, things like that that take away our focus from the most beautiful things going on right in front of us. When the day comes that I am called home I do not want to wish that I had done this or that...I want to have done it, I want to do it now.

I want to play a game with them. I want to hear their laughter and see their smiles. I want to watch them swim and play outside. I want to talk with them, while they will still talk to me. I want to watch a movie with them and read to them before bed. I want to love them, pray for them, teach them and watch them grow into young men with a heart for God.

I want to hold her and smell her. I want to talk to her, sit with her and smile with her. I want to experience things with her and I don't mean expensive material things. I mean like sitting outside in the swing with her while we watch her brothers play. I want to sing to her, I want to involve her. I never want her to be left behind.

The best days we have are the ones when we are all home together, no schedule, no agenda. I don't want to take these days for granted...they are heartbreaking but hopeful, difficult but joyous, exhausting but so worth it.

And then there were none

Baseball season is officially over at our house. Cooper played his last game last week. He had a good season and ended it with his first pop fly catch in center field, followed by a throw to second base for a double play. We were so thrilled for him!







We rounded out the weekend with our last 2 baseball parties...



This little guy could not have been more excited about getting his first trophy.



The only thing that could have made it more special was his daddy giving it to him...perfect!



I know his daddy wouldn't have had it any other way...



We didn't know what to do with ourselves this Saturday not having 3 baseball games to go to. This happens every year after football season and baseball season, we start wondering what we used to do when our Saturdays were free. Oh yeah, play football and baseball in the backyard or get the hose pipe out and have a water fight or shoot some hoops or whatever we wanted.



I always look forward to baseball season and it was so much fun this year, but we have now turned our sights toward warmer days, late nights and lazy mornings...come on summer vacation, we are sooo ready.

Update on Vital Stim

We have been doing SK's Vital Stim therapy for about 4 or 5 weeks now. We had to take a short break while she was in and out of the hospital a few weeks ago but we have been steadily back at it ever since we were discharged. This is the therapy that is working on getting her to swallow more effectively. We were told over a year ago that SK was not to have any food by mouth b/c she was aspirating it.

Well, last Friday SK had her first bite of applesauce in well over a year and she has continued to have bites of applesauce at each vital stim therapy session ever since. It's huge that she still even knows how to attempt to swallow, but she does. I am so proud of my little munchkin, she is doing so well.

Right now they are not letting me feed her anything at home b/c she is still at huge risk for aspiration unless she is on the vital stim electrical stimulation machine. From what I am understanding about this...the vital stim machine can't make her swallow but it makes her feel like she wants to swallow...the rest is up to her.

It amazes me how emotional all this is...I had really convinced myself that it was "ok" that she was 100% gtube fed. It was "fine with me" that she didn't take anything by mouth. I didn't even realize until we started this that I had adopted this way of thinking. I did it to protect myself and to make myself "ok" with everything that was going on. It's an emotional thing to watch your baby take bites and swallow again and let all that hope back in again. I have said it before, this is a roller coaster ride that we are on with our girl.

I want to go to the grocery store and buy her baby food. I want to puree her food in my mini food processor. I want her to be an active participant in dinner time with us. Sure, she sits around the dinner table in the evenings and takes in all the conversation and activity but I want her to be a participant, you know? I want to spend that time with her feeding her with food on a spoon not "hooking" her up to her feeding pump. It's scary letting all these words back into my thoughts, hoping and wondering again.

I don't know where any of this is going to go, it's way too early for anyone to make any predictions. We only have 2 weeks left until school gets out which means that vital stim therapy will be over for the summer. There is no way I can get her downtown to Children's Hospital 3 days a week with the boys out of school. Hopefully I will be able to feed her a little bit over the summer so that she can maintain the small progress she has made...she has worked so hard for it, I don't want her to lose it. She's off to a good start for now.

On a different note, SK got a haircut last week. Yes, I have become obsessed with her hair. Just wanted to share some pics of the cutest bob on the block.









In the grand scheme of life and the short time we all have here on earth, I know that her eating orally is really not the end of the world. That I have her with me at all is truly a miracle and I don't want to lose that perspective. There was a time that I never thought I would see her smile...so there is no telling what her Creator and her are capable of.

Thanks for checking in on us.

And then there was one

Slowly but surely our baseball season is coming to an end. We closed out our season with Jacob and his Texas Rangers this weekend. It was a good season with a great group of kids. Cooper is the only one still playing.





Running to second...



That's a major league shot right there...



One of the most fun times for the little leaguers is the end of the season party. They are such clowns...



This one was just too cute to pass up...



Jacob and his coach. It was a good season Rangers.



Please say a prayer for our girl this week, she has been having seizures again, 3-4/day about 5 out of 7 days a week. I spoke to her neurologist briefly on Friday and he has increased her medicine. Don't know what's going on exactly but it is heartbreaking to watch.

Lastly, I will leave you with a video I took on Mother's Day with my new Flip video camcorder...it's just a few seconds of sweet goodness.



I am so spoiled by all my guys. Thanks for checking in on us.

Sophie Kate at the Ballpark

Was this really my girl last year at the ballpark?



Wow, I can't get over how much she has changed in a year. She doesn't have baby hair anymore she has "big girl" hair now. She also has a more toddler look now compared to a year ago.

SK has definitely upgraded her look at the ballpark this year...



Daddy now carries her around in a backpack carrier and she totally loves it.



It has a sun canopy which works out great for the ballpark b/c girlfriend will not keep a hat on her head for anything. It seems she really likes being up where she can see the world.



These girls know that the ballpark isn't all about the boys...



Sophie Kate and Kennedy...





These next pictures were taken one evening when SK was getting into her pajamas so please excuse the lack of clothing, but as you will see we have to grab the opportunity when it comes.





Her whole face lights up when she smiles, it's a beautiful thing...



That right there makes it all worth it to me, all the pain, the hurt and the tears, it almost all disappears for a moment when she gives me this face.

Hope all of you have a beautiful Mother's Day weekend.

Our Teeballer

This is what he has been doing the past 2 years, watching and waiting...



We told him this year would be his year. He would be the one hitting the ball and running the bases. He would be the one in the uniform. No more wearing his big brothers baseball caps...he would have one of his very own.



This time when he wore the "McManic" shirt it was his own, not Cooper's, not Jacob's.



It was so much fun watching him this year. He had the biggest smile on his face every time he was at bat.





Getting ready to run...



He's safe!



"Put me in coach, I'm ready to play"





Yeah, he's ready alright, ready to play in the dirt. All you hear on the tee ball field are the coaches and parents continuously telling the kids to "get up" and to "stop playing in the dirt." I just wish I could say that the playing in the dirt ends with tee ball. Boys will be boys and boys of all ages cannot resist the pull to become one with the dirt.



Spring 2010 4 Year Old Pirates



Yes, daddy was the coach. We are 2 time tee ball veterans after all. Little did he know that he would need the patience of Job to make it through, but make it through he did and they all had loads of fun along the way.

Our favorite little Pirate...



Best buddies...



We had a ball with you G-man.



Can't wait till next year!