Monday, May 23, 2016

Special Needs Potty Training . . . Week 4

Potty training is moving right along. I am amazed at how well Clara is adapting and learning and maturing through this process. Here's the rundown for week four.

Day 22/Monday:
  • When I picked Clara up I was told she had no accidents and no successes, so I'm not sure how that happened. It is possible that that information was lost in translation (Clara has several staff working with her throughout the day, so sometimes the staff who brings her to the car only knows what happened during their specific shift). 
Day 23/Tuesday:
  • One accident and several successes at school
  • 5 min on, 45 off
  • No successes at home
Day 24/Wednesday:
  • One accident and three successes at school
  • 5 min on, 45 off
  • No successes at home
Day 25/Thursday:
  • No accidents at school and 2 successes
  • 2 successes at home!
  • 5 min on, 45 off 
Day 26/Friday:
  • No accidents at school and 4 successes. She manded for the potty on her own and went (pulled her PECS card appropriately)!!
  • 5 min on, 45 off
Day 27/Saturday:

  • No accidents and no successes at home. She is in a diaper between sits, thus the reason for no accidents. School told us they will let us know once she has proved she can be in underwear in the interim. 
  • Side note: I'm finding it quite hard to dedicate time to training on a typical weekend (typical meaning - without completely blocking off all day to work on it - which means being able to keep her in underwear between sits). Really need to step it up on the weekends. Camille was sick this weekend (vomiting, fever, croup like cough), which also put a damper on training. 

Day 28//Sunday:

  • No accidents and no successes at home. 
  • See above side note!

A big thanks to everyone for following along as we embarked on this (life-long) journey and for all the encouraging comments, text messages, emails, etc. We have learned from other parents of children with Cohen Syndrome that potty training for our special kids isn't ever fully mastered, but we are thankful and hopeful for all the progress made thus far, and for all the progress that awaits our precious Clara. Please keep lifting her up in prayer. We are beyond blessed to have such a village in our corner. 

Also, you can rest easy knowing I won't be posting about pee again, at least for a long while. 

Make it a joy-filled Monday! 

Monday, May 16, 2016

Special Needs Potty Training . . . Week 3 Update

Here's how week three went down. Day by day, Clara is making strides and blowing us away. We still have a long way to go, but we are very thankful for God's provision and guidance.

In all of this though, where I am attempting to focus my mind is in this . . . God is so good regardless of the outcome. He is good and faithful even if this potty training thing all goes south and never rebounds. He is good at being God and works for our best, even when prayers go unanswered. He is good regardless of if my daughter is in diapers for another year or another 30 years. It is when I focus here that positivity and proper perspective remains.

Day 15/Monday:
  • No accidents at school and 5 successes!
  • She is now on a 5 min on, 15 off schedule . . . Hallelujah. 
Day 16/Tuesday:
  • No accidents at school and several successes 
Day 17/ Wednesday:
  • No accidents at school and several successes 
  • The BEST PART . . . Twice, on her own and completely unprompted, she flipped through her PECS book and chose the picture of the toilet. The teacher was shocked because she typically will pick a picture of whatever toy she wants to play with. The first time she selected the toilet the teacher sat her on and she didn't go. A little bit later she did the same thing, teacher sat her on, and SHE WENT! This is a huge accomplishment and win for our girl and I am so very proud and thankful. Praise God! 
Day 18/ Thursday:
  • One accident and school, several successes 
  • Used her PECS toilet card AGAIN and went potty!!
  • She is on a 5 min on, 45 min off schedule
Day 19-21/Friday - Sunday:
  • We traveled to Ft. Worth to visit my grandma, who resides in an assisted living facility. We put Clara on the potty maybe three times all weekend. Since the training is still intense, and since we can't take our eyes off of her during "off" times, it wasn't logical to force the issue while cooped up in my grandma's tiny room.
  • So no accidents and no successes over the weekend. :-)

To Be Continued . . . 

Wednesday, May 11, 2016

You Hem Me In

I was reading from the book of Psalm the other morning and a verse that I have most likely read many times, made me pause. It was as if God was speaking audibly to me and saying "Stop! Right there, precious daughter. Look close. Read that line again. There is so much truth right there and so much meaning for you. This is the redemption story I speak of for my children."

You hem me in behind and before, and you lay your hand upon me. Psalm 139:5

You hem me in. 

There is so much powerful truth in that line, friends. Can we sit there for just a moment? Jesus is the bookends of my story, of your story. He goes before and comes behind and doesn't ask us to journey alone. His hand is over all of it.

You hem me in. 

The parts of our story that we don't wish to ever relive? That we don't wish upon our worst enemy? The parts that hurt and make us cry and keep us awake and night and sometimes make us feel like a crazy person has taken over our brain? Jesus is before those parts and He promises to follow up. He doesn't leave us hanging. He doesn't walk away when life gets messy.

You hem me in.

There is so much comfort and hope and peace and even joy in sitting here and letting this truth run deep. But we have to let it run deep. We have to believe it, friends. Until we believe this promise as truth we are opening the door for a life of anger and bitterness and ugliness and despair. Because life is really hard.

You hem me in.

But I don't want the anger or bitterness. I want the hope and peace and the joy. So to get to that place I have to believe that God is a God of goodness and love. I have to believe this, regardless of whatever unfortunate circumstance I might be facing this day. Because God's goodness and faithfulness are not, in any way, tied to my circumstances. That is a lie from the evil one. Circumstances are always changing and shifting but God is not. His goodness is never up for question. God is always working, and He is always steady and always constant.

You hem me in. 

Jesus walks before and walks behind and it is only Him that fills the gap. Only His hand can fill the dark places. It is only Jesus who can make miracles from our mess.

You hem me in.

I write these words with tear filled eyes, not out of sadness, but out of complete amazement and wonder of this promise.

So may you feel His love today. May you feel His presence and His hope. May the joy come. And may you believe that He does indeed hem you in. . . even in the midst of the very thing that is making you hurt. And may you feel His mighty hand holding tightly to yours.

Tuesday, May 10, 2016

Special Needs Potty Training. . . Week 2 Update

Clara is rocking right along in potty training. She is doing so well, better than I could have ever  expected. God truly is listening to and answering our prayers. There have been several days of no accidents at school, and even several instances of success at home. So proud of our hardworking girl!

I will likely track her progress here for the first month, for my own documentation purposes (sorry!), so feel free to just click "Mark as Read" on your blog feed. . . because surely this is not interesting to anyone but me.

Day 6/Saturday:
  • Started the day at level one - first full day of in home potty training! 
  • 3 accidents, 0 successes
Day 7/Sunday:
  • Started the day at level one - second full day of in home potty training
  • 2 accidents in the morning and 2 successes in the afternoon!! 
Day 8/Monday:
  • Level one - back at school 
  • 0 accidents and 1 success!
Day 9/Tuesday:
  • Level one
  • NO ACCIDENTS AND THREE SUCCESSES! I about fell on the floor when her teachers told me this at pick up. 
Day 10/Wednesday:
  • She graduated to ten minutes on followed by ten off because. . . 
  • She had NO accidents at school and FIVE successes! I pretty much started crying my eyes out when her teachers came running to the car to tell me after school. 
Day 11/Thursday:
  • Three accidents and three successes at school. One success at home!
Day 12/Friday:

  • No accidents and EIGHT successes at school! (They count anything that makes it into the toilet, even if it is a dribble.)
  • Still at a ten min scheduled sit followed by 10 min off. 

Day 13/Saturday: 
  • No accidents and two successes at home. We only actively worked on potty training for about 4 hours of the day.
Day 14/Sunday:
  • Zero potty work this day. We were traveling around town for Mother's Day get togethers and the day did not allow for focused potty time. :-)

She continues to wear pull ups during car rides, meals, etc, and wears an overnight diaper to bed. 

Apparently Ms. Camille has been paying close attention. She came out of Clara's room like this recently and could. not. stop. laughing. She is such a little ham. I must say I am impressed that she got the panties on correctly, without my help. 

To Be Continued. . . 

Sunday, May 8, 2016

For the woman who needs some extra encouragement on this Mother's Day . . .

Missing your baby on Mother's Day
To the Miscarriage Mamas on Mother's Day - "Dear miscarriage mamas, this Mother’s Day, I pray that you honor it as you need. That might mean hiding under the covers, tear streaked. It might mean putting on a pretty face at church or a family gathering, and screaming in the shower later in the day. It might mean accepting sweet misspelled cards made by tiny fingers, and still giving yourself permission to feel that pinch of grief mingled with great joy. It might mean visiting a grave site. Mother’s Day is about celebrating life and life givers. I think for us, the miscarriage mamas, who hold this day with interweaving and complicated emotions, we have a piercing reminder that today we can also celebrate the ultimate life giver – the one who ravaged death and will someday make all the sad things come untrue."
5 Things to Remember This Mother's Day
Sweet child's video to all mother's who have experienced pregnancy loss

Missing your mama on Mother's Day
When You Still Need Your Mom and She's Not There Anymore

Extra encouragement for moms on Mother's Day
For the Mom Who Doesn't Feel Good Enough

Mother's Day is always a bitter sweet day for me. Losing a mom at a young age and losing a son to stillbirth makes this day feel, well, a bit different. Much like the first article, it is a day that might always mix great joy with a pinch of grief. So my prayer for all of us today is this . . . Whether you are a woman who longs for a child, a woman who has recently lost a child or a mama,  or a woman who feels abundantly blessed but a bit lost with a house full of littles, may you turn your ears to Him on this day, this Mother's Day. May you get still and feel His presence and let it pierce deep. He is there, waiting for you. He is ready to bless you with His gentle whispers. Even today. On Mother's Day. Blessings to you all.

Wednesday, May 4, 2016

Clara 4 Years

This kid turned four years old on Monday and truly, the thought it blowing my mind. How in the world have four years past before my eyes? I know, super cliche, but it is so very true.

I love waking the girls up on their birthday and taking a picture of their cute little sleeping selves, and also right after they are up. . .

"Wake up hair" is a real thing in this house. . .
See what I mean. . . Her hair is on point . . . 

Pure JOY. . .

A few things about Clara at age four years:
  • She loves to swing outside, cuddle her big teddy bear in her room, play on mommy and daddy's bed, play on the iPad, and enjoys any toy that makes music and lights up.
  • Her favorite foods include bananas, any type of berries, clementines, grapes, spaghetti, chicken nuggets, and of course, she would drink only milk forever and be perfectly content. Mommy is trying to get her to love water, but so far it isn't happening. 
  • She attends full time therapy school, Monday - Friday, 8:30am-3pm. She gets private speech therapy once a week (goes a bit late to school on that day). Clara has intensive eye tests every 6 months and a basic eye check up (dilation to check for retinal dystrophy) every 3-4 months. 
  • She is working on so many skills at school - gross motor (walking up/down stairs) and fine motor (using a fork, spoon etc), imitation, responding to her name, responding to basic directives, recognition of family members, language expression and comprehension (via PECS) and as you know, potty training as of last week. Our biggest prayer for Clara is that God would open her mouth to speak words. 
  • She is 3 feet 4 inches tall (57%) and 36 pounds (62%). 
  • She truly is pure joy. There is just no better word to describe this kid. She is my constant reminder that life throws us struggles and hardships, but that doesn't mean we have to throw ourselves a never ending pity party. Life is hard but life is beautiful. Clara reminds me daily that there is always much to celebrate, even in the hard. 

Potty practice . . . (she sleeps in Brandon's childhood baseball jerseys . . . so adorable)

She is starting to give her own version of a hug. This has taken years of practice. Melts my heart.

Happy 4th birthday, kiddo. You're simply the best! Excited to see where God takes you this year.
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