Ruby's Birthday Party

Ruby turned four on May 10 and even though this happened a little while ago, I still wanted to share.  Usually birthdays are hard days for me because of expectations I had about birthday parties. In my head, birthdays are supposed to be days full happiness and celebration. I figured Ruby would be running around, getting a sugar high from lemonade, candy, cake and ice cream. I thought she would be dying to open her presents and then protecting her new toys from her rambunctious brother. I planned that we would have to tell her several times to say thank you and give hugs to her grandparents who spoiled her again this year.

Instead, Ruby doesn't even know she is having a birthday. The noise of a party actually makes her anxious, tired and fussy.  She can't eat cake or open presents. She can't say thank you to her guests and she definitely can't run around with her brother and cousins. We hardly celebrated her first three birthdays; it was just too hard. I was grieving the loss of the dreams I had for Ruby.

This year was different. I was ready to celebrate many things.... God's faithfulness through tough times, the joy Ruby has brought to our family, the strength of our marriage through rough stuff, Ruby's smiles and giggles, the family and friends who have supported us like crazy these past 3 1/2 years...

So we had a birthday party.  We met our families at a park, the kids played, we ate pizza, Emily made a beautiful cake and Ruby "opened" her gifts (with some help :). We were able to share a little and pray with our families.  And although it was not tear-free, was a beautiful evening worth celebrating!

"For you created Ruby's inmost being, you knit her together in her mother's womb. I praise you because Ruby is fearfully and wonderfully made" Psalm 136

Charlie

Charlie is my energetic, passionate, creative, emotional, music-loving son.  He is strong willed, intense and hilarious; he makes me laugh and he makes me incredibly tired, especially when I am trying to potty train him.  After 24 hours of running around after him in his underwear so he wouldn't pee on the furniture, I threw in the towel. My son may be going to kindergarten with diapers....oh well :)

I was feeling frustrated with him these last few days and then he reminded me about the big picture, as kids have a way of doing...

Tabatha is cutting a tooth and battling a cold so she was screaming pretty good in her car seat this afternoon.  I was feeling anxious, as most moms do when their baby is crying in the back of the car, when Charlie started to sweetly sing "Jesus Love Me" to Tabby. She stopped crying and just watched him while he sang to her.

Wow-- this melted my heart and reminded me God has incredible plans in store for Charlie and He chose me to be his Mom!  I pray God will give me the wisdom and strength to help Charlie become what God wants him to be and to not sweat the small stuff.

(To a few people who encouraged me today-Thanks for the advice! We all need to be affirmed in our role as parents once in awhile.)

ER Visit

Spending three hours in the DeVos Children's Hospital ER tonight reminded me of our old life with Ruby. We used to frequent the hospital and lately we haven't had to spend near as much time there. We LOVE DeVos; the nurses and doctors there are great, but I can think of a few better places to spend my first Friday night of the summer.

Thankfully, this visit was not a huge emergency. Ruby had a low grade fever today and this afternoon I noticed her g-tube site was a little swollen, red, and very sore. I figured it was probably infected so I called the nurse from the surgeon's office. Unfortunately, because it was Friday afternoon at 5:30pm, our only good option to get antibiotics was to take her to the ER. So, Mark stayed with Tabby and Charlie and I drove Ruby to DeVos. We had to wait around for a little while, but I left with a pretty happy little girl and a prescription for antibiotics. Hopefully this infection will clear in no time.

Last year, Ruby would have screamed her way through this kind of a hospital visit. This year she smiled for all the nurses, kicked around on the hospital bed and giggled her way through the elevator ride. Her stomach seems sore, but she is such a trooper! A huge difference from twelve months ago and I am so thankful for the change.

Thank you God for a minor ER visit and a content, happy, little girl.

ABR Update

My Mom and I recently took Ruby to Pennsylvania to another ABR training. The trip went really well. Ruby was an ANGEL in the car. She didn't make a peep the entire 12 hours on the way there.  She also slept really well in the hotel, which is always a concern of mine.  I was so thankful to have my Mom with me. She helped a lot with Ruby, drove more than half the way and kept me company. She is also a great encouragement as we work hard on therapy with Ruby.  We got a great progress report and comparison file from the ABR trainers. They continue to remark how well Ruby's body is responding to the therapy and we are so thankful for that. See these great improvements makes all those hours of ball rolling and pumping worth it! I need to post pictures of her comparison file; hopefully I get an electronic copy sometime soon.

For anyone who is wondering....ABR stands for Advanced Bio-mechanical Rehabilitation; it is a therapy for brain injured children, many who have the cerebral palsy diagnosis.  The goal of the therapy is to normalize the child's musculoskeletal system; once the body has a more normal structure, it will improve in function. We are thrilled with the progress we have seen! Ruby's structure continues to improve and the changes are permanent! If you are interested in ABR, I would highly recommend checking out the new links on my blog and please ask questions! I would love to help anyone gain information about this therapy, especially those who have a child with cerebral palsy. There is hope, even when normal physical and occupational therapy don't seem to work.