Sunday, September 18, 2011

Thirteen Months Old

Playing on the bed is one of Caleb's favorite activities. He bounces, flops down, rolls around and laughs like crazy.

Caleb is now 13 months old. Last week, he weighed 17 pounds, 4 ounces. That puts him at the 0.2 percentile. He has been on that same growth curve for months now. He is growing at the proper rate, he just happens to be doing it well below the standard.

He is now saying "Da" for Phil quite often. He does say "Mama" sometimes too. He'll wave if you tell him Goodbye or Hello.

Caleb is not walking yet, but he is always standing up and holding onto something. Now, he pulls himself up on your legs when you are standing and gets mad when you want to walk away.

Now that school is back in session, he is back to occupational therapy once a week. He is doing great with his motor skills. Last week, he crawled all over the place and played with all the cool toys the therapist brought. We are now working on trying to get him to say some more words. We are noticing more talking each week.

We can see his front two bottom teeth, but they are still not through yet. This has not kept him from eating everything in sight though. One day he was eating Wheat Thin crackers. If you suck on things long enough and provide enough drool, you can eat anything.

Caleb has a cold right now, but he is making it just fine. He only had one really bad night so far, but is still really snotty. He is pretty happy and is taking his job as official trash can emptier very seriously. He has a love/hate relationship with Kleenex. He hates to have his nose wiped, but he could pull them out of the box all day long.

Overall, Caleb is doing amazing. We have noticed no problems with his hearing or his vision. We haven't noticed any developmental issues. He is a good eater and is making some progress using a cup.

Over Labor Day weekend, we got some pictures of Caleb with his heart buddy Ben. Ben was born four days before Caleb and had his first surgery a day or two before Caleb's first surgery. Ben's Mom and I are providing informational packages to parents in Grand Rapids whose children or unborn babies are diagnosed with a heart defect requiring surgery. We thought it would give people hope to see these two together after a total of seven surgeries between them.

This is what Caleb looked like one year ago:

And now for my Public Service Announcement. If you have ever considered organ donation, but have not yet signed up, here is a link to a story that may help you to make the final step. The boy in this story has Hypoplastic Left Heart Syndrome, a defect similar to Caleb's, but the left side (the stronger side) of his heart did not form correctly. He met his donor's family just recently and there is some great footage of the meeting. If you want to sign up to be an organ donor, you can click on the icon on the right side of the blog and you will go right to Michigan Gift of Life, the official organ donation database for Michigan.

Tommy's Story

Friday, September 2, 2011


The whole crew

Caleb in a dress

Caleb was baptized in our church this past Sunday. Last year at this time, the thought of getting Caleb baptized in the presence of our families and church family was something I barely allowed myself to dream about. After his first surgery, the nurse in the ICU asked if we wanted the chaplain to baptize him in the hospital. Phil and I decided that we would wait and that Caleb should be baptized in his home church. Sunday, we were sure we made the right decision.

We decided to have Caleb baptized in the gown that the Big Three all wore when they were baptized. They were a lot younger when they were baptized, so we will probably have some explaining to do when Caleb sees the picture of himself at one year old in a dress. Hopefully, we did not cause any permanent scarring. The baptismal gown was lovingly sewn by a very special person when Ella was born - thanks Grandma Pat! She used fabric from my wedding dress and beads from my sister's wedding dress and made it in honor of my mother who had died when I was pregnant with Ella. The significance of the gown trumped any issues we had with Caleb in a dress.

I tried mightily not to cry too much, but the joy I felt was overwhelming and I did need a few tissues. It was wonderful to have our happy, healthy little boy climbing all over me with our family and church supporting us still - as they have all the way along our journey! We could not have made it through this adventure without the love and support of our church, our family and our friends.