I saw this on facebook yesterday. Posted by a friend who has been down a similar road as us. And it just spoke to me. I think that this is what we've sort of done naturally. I mean yes there are tears and fears and days that leave us questioning everything we're doing or have done but, for the most part we're okay and perhaps better then okay. Because it's a choice we've made. It's what we do for Riley, for her spirit and her mental health and it's what we do for Logan and Mason.
With that being said we've been busy busy busy since coming home from the hospital. Trying to thrive and soak up as much time as we can with the kids. We're also getting ready to head back to CHOC on Thursday for the ICP. For 48 hours. At least this time we are ready, prepared and have a plan in place. Makes it much much easier. Although having to be there at 530 am will be a challenge!
I've been second guessing this procedure for the last couple of days. Thankfully, I have Dave. He reminds why we're doing this and also reminds me what the doctor said at the appointment to discuss this. It has to be done. It's for Riley's good but, it doesn't make me any less nervous or scared.
Just yesterday Riley did so so well in visual therapy and physical therapy. So well that I drove away from home and immediately called Dave to question having this procedure done again for the millionth time. I just don't want to rock the boat although I know it's already rocking. Even if it is decided Riley does not need a shunt we still face a series of procedures to check on her trach and the cochlear implant surgery. So.... whether we like it or not we need to toughen up and stay strong for Riley and the boys. They need to see the confidence in our faces with each of these events as they come up in the next few weeks. I see a noticeable difference in all 3 when we show them through our actions and words that everything is going to be okay and that this is just part of the road we're on together.
This weekend was nice. We were all home together. Logan had his first friend birthday party for one of his buddies in his K class. It's always fun to see the kids interacting and playing with one another while their parents are present as well. Most of Logan's friends in K also attended preschool with him so they all know one another and tend to get along fairly well. They are all 5ish though so you can imagine what that means! I really think it takes a special individual to teach preschool or Kindergarten. I know I couldn't do it! But, all of Logan's "buddies" are sweet kiddos with wonderful families so Saturday was just a reminder of the wonderful community Logan is a part at school.
Saturday afternoon our nephews Drew and Tobin came over to spend the night and hang out. Drew, who just turned 18 (and now I feel OLD), is a wonderful babysitter and used to watch Logan for us when he was younger. He stayed with the boys and we went to our neighbors house for a party. It was 4 houses away, Riley was in good hands, the boys were in good hands and it was nice to get out for a little bit, together!
Sunday we decided semi last minute to take the boys to the LA County Fair. I really didn't want to miss out on going as Logan loves the fair and so we took advantage of a free afternoon to go eat some greasy food, play overpriced carnival games, cringe at the rides that looked like they were missing a screw and people watch in one of the best venues to do so.
 |
| One of the many pictures Logan had to take in these photo prop stands throughout the fair. |
 |
| Mason's first carousel ride. |
 |
| Riding the rides! |
 |
| Playing games with daddy. |
 |
| Not even out of the parking lot and he was OUT! |
Monday we were able to participate in the annual Tommy Donfrio Charity Golf Tournament. And no, I did not golf. My pretty pink clubs still decorate the same corner in our garage that they have since the day after I got them. It's an event that we love being a part of put on by family/friends that are so dear and wonderful to us. And in honor of a man that we are both blessed to have known. We're just happy that things worked out the way they did and we were able to be there. Dave's happy he survived a round of golf and even took 2nd place! Logan claims that the 1st place team must have cheated. (He always thinks daddy is the best at everything!) The day ended with a wonderful dinner and silent auction.
 |
| With Jen Jen! |
Yesterday was crazy. I took Mason with us to Riley's PT. He's never been, for obvious reasons. Try corralling an 18 month old in a room full of new to him toys. I think that will be the first and only time we do that. I did like that he could see what Riley was doing and the cheers he gave when she rolled on her own were priceless. He may be Riley's biggest cheerleader!
In the afternoon we headed over to my parents house to finally try and get some shots of all 3 kids together. I can laugh about it now but, man the boys were definitely making Julie work for a decent shot! Riley of course was an angel. So relaxed and happy to be out on the grass in the cooler early evening weather. We're excited to see what Julie was able to get. Trust me when I say it was not an easy task trying to capture these 3!
 |
| Logan may be crazy at times but, he adores his sister. Blurry pic from my phone but, it really captures the love he has for her. |
 |
| Perfect shot. Blurry as it's from my phone again. Logan trying to boss Mason around and holding Riley. Mason trying to get to sissy and Riley looking at her brothers like they are crazy.... |
 |
| The pretty princess. Taking a break from pictures with mommy. |
 |
| Pretty much captures Mason. He would not stop at all! |
I'm going to include the link for the CHOC walk again. I know the next few days are going to be busy and I don't want to forget to remind you to sign up if you haven't already done so.
Team Riley
I also have to point out that Hannah (our wonderful babysitter) has blown me away with the money she has raised for this. I went to go get the link again for today's blog and saw this. Thank you Hannah!!!
 Hannah Seeker | $320.00 |
I know everyone always asks us (and those that don't probably wonder) if we're doing okay and the answer really is yes. At the end of the day, week, month we remember that we have each other. We have another day together. And as silly as it sounds it helps us to continue to fight for Riley and get out of bed each day. Seeing all 3 of our kids together, watching the kids interact with one another and seeing the pure joy in Logan and Mason's faces when they talk to Riley or are around her makes the fight worth it. Heck watching Riley's face light up when one of her brothers walks in the room is proof enough that life is ok! Without Riley we'd all be lost.
Thank you for the prayers and thoughts and kind wishes. As always, we Fight On!
Love,
Dave, Megan, Logan, Mason and Courageous Riley!
No comments:
Post a Comment