Wednesday, June 29, 2011

Getting ready...

Today I took Kayleigh to OSUOKC, it's a small community college here in Oklahoma City and I have a dear friend who is the Director of Student Services. Kayleigh will be a high school senior this fall, but I felt like we needed to get some advice so we'd know what to be working toward. My girl is growing up. Today was bitter sweet. My friend talked mostly to Kayleigh and I tried not to interrupt and give my thoughts and opinions. It's part of the very hard process of letting her go and giving her control of her future. SCARY! Part of me wishes I could just make all her decisions and set up her life and just place her gently on the path to adulthood. The other part of me knows that's completely unrealistic and I'm going to have to let Kayleigh choose these things for herself, even if they don't look like what I think they should look like. I'm believing Jeremiah 29:11 for her...For the Lord knows the plans he has for her...

Saturday, June 25, 2011

Slow and steady...

Well, I think Fletcher's going to do just fine in his new unit. He's probably not getting much rest during the day watching all the big boys but he'll sleep better at night, right? Yesterday they upped Fletcher's time off the ventilator to three hours at a time twice a day. He did great and tolerated it really well. Normally when they wean the ventilator they start slow and when they hit two hours they start doubling the time, meaning they go two hours and if they tolerate it the next wean is four hours, then eight hours, then twelve then twenty four hours! I'm so grateful for the slow wean and that they're really thinking about Fletcher and what he can handle.

Craig downloaded 1500+ pictures and videos off my iPhone onto my laptop, which will make it so much easier for me to blog! A TCC staff photographer gave me a thumb drive with pictures of Fletcher from the past two years, as well. So, I'll start sharing some of them here on my blog.






Here's a picture of me and the kiddos from last July...


This is Fletcher's sprinting shirt...


Philippians 4:13


"I can do ALL (breathing on his own) things through Christ who gives me STRENGTH"

Wednesday, June 22, 2011

Hanging with the big boys...

Today Fletcher moved into a new unit. There are five teenage boys in there! This is going to be interesting. The unit he just left had children his SIZE not his AGE, so he was the big boy in that unit. It's going to interesting to see how Fletcher responds to these big kids. Several of the boys use power chairs and roll around the place independently, I'm hoping it make Fletcher interested in his new manual wheel chair. Peer pressure can be a good thing sometimes. Fletcher has progressed a lot since he started kindergarten and I'm sure it's because of the kids and their 'typical' behavior. One thing I think most people aren't aware of is that Fletcher is only delayed because of his circumstances not because there's 'something' wrong with him. He's a pretty smart kid and he knows how to get what he wants. For someone with a limited vocal vocabulary he's an extremely good communicator.

Okay so I just blogged two days in a row. I'll try to keep it up and keep you posted on what's going on around here. :)







I know his face is dirty, but this is quickly becoming my new favorite picture!

Tuesday, June 21, 2011

The Long Journey Home...

I can hardly believe I haven't blogged since Thanksgiving! Boy, do I have a lot of ground to cover to catch you all up!

I really don't even know where to start! Well, we've been really busy. Kayleigh is officially a SENIOR!!! Next week she and I will make a trip to OSU OKC to get an idea of what we need to be doing to get her ready for college. Kayleigh's still not sure what she wants to do career wise so it's time for us to get busy! Kayleigh is also looking forward to spending a few weeks in Mississippi with her maternal grandparents. Maddie finished up third grade and had a great year academically. She is enjoying summer! This year Maddie is attending a little day camp called Summer Spectacular. It is three weeks long and each week she took a different class of her choice. The first week was Math Mania, which she loved! The second week she chose a reading class and thoroughly enjoyed it. This is the last week and she's taking a French class and I'm pretty sure it's her favorite of all three classes! Next month she is going to summer school with Fletcher to volunteer with the special needs kids. Then hopefully a break before school starts!

Fletcher turned six last December and right after his birthday they started slowly weaning his ventilator settings. By the end of February, Fletcher was on CPAP settings, meaning he was initiating all the breaths by himself! On May 24th I got a phone call from his nurse practitioner, Julie telling me they had just 'sprinted' Fletcher off the ventilator for 15 minutes! He was completely OFF the ventilator, breathing on his own for 15 minutes!!! So the process has begun to get him off the ventilator completely! Each week since, Julie has added 30 minutes at a time of him being off the ventilator. He's off the ventilator twice a day, once in the morning and once in the evening. Tonight he will go for 2 hours!!! He's tolerating it well. He's still a bit anxious about the whole thing but there is always someone near when he's off so they can help him if he gets in any trouble. If Fletcher can come off that ventilator completely he can come home and live with us! I don't know how long it will take but, there is an exit plan in place, kind of! We, of course, have always said we would bring him home when he got off the ventilator but I'm not sure 'other people' really thought he'd ever leave The Children's Center. It's very exciting and scary all at the same time. Exciting, because we'll all finally be under one roof. Scary, because he's still a kid with some pretty intense special needs and we'll be taking care of him by ourselves. Financially, it will probably be a stretch for us and I can't in my feeble brain see how the Lord will work that all out, but I'll let the Lord think on that one and work it out for us! I'm standing on Philippians 1:6 "For I am confident of this very thing, that He who began a good work in you will perfect it until the day of Christ Jesus." The Lord is faithful and finishes what He starts. Our children belong to Him and He will take care of them. A good friend, reminded me that the Lord is not only preparing Fletcher, He's preparing ME for this new adventure of having Fletcher at home full time. I'd appreciate your continued prayers as we travel this Long Journey Home!



Such a happy boy...


Doing one of his favorite things...



At the OKC Zoo...