Tabatha Marie

My sweet baby turns one tomorrow! Happy Birthday Tabatha!

I feel like Tabby doesn't get a lot of attention on my blog so, in light of her birthday, I want to document a what she has been up to lately.

Tabatha is smiley, easy going, curious, sweet and very happy.  

She is walking all over the place lately which keeps me hopping.  She doesn't have many words yet, but she says "hi" frequently. I think I can make out "cheese" and "da da" for Daddy also.  

I am sure "ma ma" is coming soon.

  She is not a big eater and still LOVES her bottle. 

I don't mind the cuddles while she takes her bottle so I am not in a big hurry to get rid of it.

Tabby likes her brother's attention and she puts up with his hugs and tackles fairly well, which only gives him encouragement to do it again and again.  We are working with Charlie on being gentle, 

but it is not going great :)

Cheese and strawberries seem to be her favorite foods. Eggs are usually a hit as well.

She just started sleeping through the night (at least on good nights) about a month ago.  It is rare that all three kids sleep through the night on the same night, but when it happens 

I feel amazingly rested the next day. She still needs two naps a day, but sometimes a nap in the car is sufficient, which is nice when we are on the run.

She loves to swing and is very content to stay in the baby swing outside for long periods of time.  

Ruby loves her sister and always giggles when Tabatha comes near. Tabatha enjoys crawling on top of Ruby, grabbing at her feeding tube and playing with the barrettes in her hair. Ruby puts up with it like a champ! I hope these sisters have a special relationship as they grow up together.

Tabby Marie, you are such a blessing in our lives and it's hard to believe you have been with us for a year already! Thanks for your smiles, cuddles and giggles. I can't wait to see what plans God has in store for you.  We love you! 

Dreams

Loss and grief hit me at weird times. I did not lose a child and I am not comparing our experience to that but when we realized Ruby had so many special needs I mourned the loss of certain dreams I had for her. I had pictures in my head of what it would be like to watch her walk for the first time, celebrate her birthdays, send her to school...etc. Now we won't get to experience most of those things with her and so in a way I had to grieve the loss of those dreams.

For the most part, those old dreams don't get me down anymore. I have accepted Ruby the way she is and we have learned to enjoy her for her. We don't think about "milestones" much anymore; we try to just celebrate any progress she might make. We LOVE that she giggles and smiles all the time and we truly enjoy our bond with her.

For some odd reason yesterday my mind wandered and I let myself think about the "what ifs". Charlie, Tabatha and I had so much fun playing outside yesterday morning, yet I felt sad that Ruby couldn't enjoy the beautiful summer day like her siblings could.  Random pictures of her running with Charlie in the yard and her going down the slide in the kiddie pool kept popping into my head.  Ruby and Charlie would have so much fun together if she could run and play with him.

I shouldn't let my mind go there, but it did for a few moments yesterday.

Tomorrow will be better.

Minnesota

We recently returned from a great week in Minnesota with Mark's family. Ruby stayed home with Emily for the week. It was a tough decision for us to leave her behind, but it went really well and I think it was the right choice for our family.  Emily took great care of her and we were able to focus on Tabatha and Charlie for a week.

Here are a few photos from the week:

Boating with Grandpa and Grandpa

New fire truck PJs

On our way to the Twins game.

Playing the ipad with cousin Max

Charlie and Great Grandma Douma

Swimming in Lake Okabena

First tube ride behind the boat

Pool with Dad

Cousin Jade, Charlie and Tabatha having fun in the kiddie pool at Grandpa and Grandma's

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.