Perserverance

"Consider it pure joy, my brothers, whenever you face trials of many kinds because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything." James 1:2-4

Last week Maggie was diagnosed with Cerebral Palsy. I've been waiting to write about it because I had to be ready- had to get to a point where I could talk about it. Obviously this is a pretty serious diagnosis and one that will bring trials for quite awhile or longer I'm sure. I took Maggie to her 6 month follow-up with the neurologist and wasn't expecting anything more than him tracking any progress she's had the last 6 months and any issues/concerns we may have. We expected CP when we took Maggie to the neuro doc last summer and were surprised when he specifically said it wasn't, so I was equally surprised when he changed things up this time. Why did he? I asked the reason for the change-up time and he replied that he knew she didn't have classic CP and sometimes tone issues like Maggie's are more difficult to see in younger babies but present themselves in such a way as they get a little older.
I'm not going to go into my feelings on why I think his response and reasoning was absurd because it really doesn't change anything. CP doesn't change who Maggie is-- how bright and beautiful she is (and her therapists say this so I'm not entirely biased here:)) or what she's accomplished up to this point. Daniel and I talked about this shortly after the appointment and the truth is Maggie's future is in God's hand, not the neurologist's. He doesn't expect her to walk-- at least not without a walker or other assistance and that may be the case but it may not be. We've heard plenty of true stories where doctors didn't expect much and patient's surprised them. And since her diagnosis, we've heard several accounts of adults with CP living "normal" lives- husbands, wives, kids, college, etc. Again, this may not be the case with Maggie, but it may. Our job as her parents is to love her and nurture her and help her and raise her in the Word no matter what difficulties she may have. She will be the person God has made her to be and our number one prayer is her salvation and that she'll be a light for God's kindgdom despite her disabilities- and maybe she'll have a greater testimony because of them.
Now, I mean everything I just said but that doesn't mean I won't have hard days or haven't had hard days. It is difficult to watch my daughter struggle and it is difficult to have to hold her up so she can stand and play or feed her meals instead of walking away while she takes care of things herself. And the thought that she may never run or climb with other kids is a tough pill to swallow. But when I told Marliese what the neurologist said, she told me to get that out of the back of my mind because walking will always be a goal and always something we're working toward. I'm going to go ahead and apply that to all areas of her development because I can't limit her based on what I think she may not be able to do.
Please continue to pray with us, for our perserverance and Maggie's, and still for her healing. Jesus healed many adults with illnesses and disabilities so I don't see anything wrong with keeping hope and faith alive if that's what his plan is for Maggie.

Funny boy

I know I've missed some things lately, but have managed to write down a few conversations little man has come up with lately.

1/27
M: Decepticons are the bad guys, Autobots are the good guys
W: No, decepticons not bad guys
M: Yes they are honey. Megatron is a bad guy and he's a decepticon
W: No they not bad guys. The bad guy just comes and makes them bad 'cause they don't have toys to play with. And no food to eat.

1/28
Hey dad, you better watch out for Swiper the fox or he's gonna swipe your face off!

2/3
Let's get a snack I'm hungry. My belly hurts 'cause it wants grandma just like I want grandma!

2/4
I need to let my belly rest. What's my deal with sayin that all the time when I eat somethin?

2/10
M: Hey Hulk
W: I'm not Hulk!
M: You're wearing Hulk underwear
W: I just want to wear it! that doesn't mean I'm Hulk!
- for several days leading up to this he pretended to be the Hulk alot-

2/11
to Keenan:
I know you love me but it's not all about licking

2/16
Are you sure you wanna sleep here 'cause my room doesn't look this good at night time. Are you sure you wanna sleep in this creepy room?

Valentine for the birds

Will was supposed to make a bird valentine on Tuesday, but they didn't get to it, so they made it today. He was telling me all about it when we got home then said, "Oh! It's in my folder, let me get it!" He brought it outside and showed me this cute little bird feeder he made-- a bagel with peanut butter and bird seed. We had to hang it on the tree right away!

 then he yelled, "birds! birds! come get your treat!!"

We waited outside for awhile but no birds came :(

Maybe tomorrow

Will's Valentines party

On Valentines Day Daniel, Maggie and I went to Will's school for his little class party. Before lunch began, all the kids gathered in the atrium and sang 2 songs and a little poem. And by all kids, I mean everyone except my son. He spent most of the time with his head buried in his lap. I was prepared for this, though, he told me on the way to school that morning that he didn't want to sing so I told him to just smile. He didn't do either. But at least he sat there and didn't get up and run around or something like that. I forgot to grab my camera before leaving that morning, fail. Daniel did take a few shots on his phone though (mine was dying or dead- fail again).
At the beginning of the year we signed up for two parties to contribute and this was my second. I had favors this time. A few really cute ideas crossed my mind but in the end I went simple. I bought some packs of Valentines cups at Walmart, added filler, printed some hearts out on the Cricut and glued them to a cookie stick. Voila! A centerpiece for each table. I cut out a dozen or so more hearts of a smaller size for confetti and that's really all I did for decorations- we're all there for such a short time that it seems silly to do too much. Then I filled one cup for each child with treats and stuck a heart on the front with their name. I doubt there's any pictures of these, I forgot to take any at the house before leaving and I'm pretty sure Daniel didn't photograph them at the party. One of the treats was Hershey's Hugs, mostly because I wanted to do a little bag that said "lot's of hugs coming your way, have a Happy Valentines Day!" but just added them to the cup instead. Maybe next year.
The kids exchanged valentines before the party and Will was so excited about all his! He could hardly wait 'til the party was over to show me the holder he made and all the treats inside.

before the singing even began

 nope, no singing here

 you can see the centerpiece here...the favors for the kids

are in the same cups just filled with candy

Company

This past weekend my sister came down for a quick visit- Saturday afternoon to Sunday afternoon. We spent most our time indoors cause the weather was yucky, but the kids did get a little playtime on the swingset. We all had a good time and as we looked through my 365 project from 2011, we realized she came down the exact same weekend last year!

Taryn loves to hold Maggie!

 the boys

 cool girl in sunglasses!

 Livy & Will very excited about the cinnamon rolls

 Keenan begs Caleb for love

Maggie 17 months

Maggie turned 17 months old today and I'm actually managing to blog on the same day! Sweet girl is just workin so hard and growin up so fast. Her exercises and therapy are still based around the same principles: strengthening her core through sitting, standing, transitioning and walking to name a few. Each week and month she gets stronger-- she's really good at sitting in grocery carts and highchairs now-- still not quite the level of other children her age, but we've really come a long way. She sits for really long periods of time to play, unless of course little miss priss doesn't want to and decides to lay down. Then we just work her back up to a sit and she's able to do most of that work herself now. Maggie is also standing very well, especially with her AFO's, she has come to really like them and we're pretty sure it's because she knows the difference in her posture and how much harder she works to stand without them. I mentioned several of these things a month ago and everything is a work in progress, but she's getting stronger and more independent as the weeks and months move on.
I think the biggest differnce since this last month is her walking. Marliese did indeed get us a walker for the house and Maggie takes some really good steps. It takes a lot of coordination and strength to both hold to the walker and take steps but she can do a few on her own. Marliese was very impressed. Maggie loooooves to stand and walk like a big girl! Today at therapy she walked all the way down a long hall and halfway back pushing one of those sit and scoot cars that have a handle on the back. Katie was just holding her at the hips for support, but she did the lion's share of the work herself. It was pretty awesome to watch. She's also getting better with self feeding-- she started last summer but now she has taken a stronger interest in feeding herself and is able to pick up something, take a bite, then set it back down. We just love watching this baby girl acquire new skills or improve on the ones she has.
I met a little girl at therapy today whose mom told me was so excited about her new shoes because she's just been released from AFO's. The little girl is 3 1/2 and the mom told me she never really expected her to walk without them- in fact she's only been walking for about a year. She had some of the same issues as Maggie - low tone, weak trunk strength/control, etc, but also had hip displaysia and her mom thought she was going to need a painful, intensive surgery, but they've been putting a brace on her at bedtime and naptime (not sure how long, I didn't ask) and it's corrected now! God is good. So, this doesn't mean that Maggie will ever walk without AFO's or even walk independently at 2 1/2. But, it's nice to not only hear, but see stories like that in action- tangible hope. I love you Maggie Moo and am so very proud to call myself your mommy!!!

17 months

good steps in the walker