21 Months Old

Faith's Angels Walk - Heart Families

Faith's Angels Walk

Looking Snazzy in his Easter Clothes

Stomping in Mud Puddles

Faith's Angels Walk

Caleb is now 21 months old and is pretty much just plain normal. He likes cupcakes, mud puddles, playing outside and causing trouble. He is learning that you can't always get what you want and that you can't hit the other kids at daycare. He has been sent to time-out more times than we can count. Hopefully with our combined efforts at home and at daycare, we can convince him that this is not acceptable before we have a little dictator on our hands.

He can say at least 20 words now. Mama, Dada, baby, more, please - the usual stuff. He is still teething and drooling like a Saint Bernard. We are going through Tylenol and Orajel like water. Two new molars came through in the last week. Maybe by the time he is 4, we can stop putting bibs on him!

Caleb got to participate in his first heart defect awareness walk two weeks ago. Faith's Angels, the group that sold the paper hearts in February, has a walk in Sparta (Faith's hometown) to raise awareness and funding for research. We met a couple of other heart families and were excited to be part of an organization trying to help kids like Caleb.

Caleb is just about 21 pounds now. He is still hovering around the 1 percentile. He is still growing according to the normal curve, just on the really low end. This is what the pediatrician was hoping for - normal growth. Caleb is still short, 12 month pants fit him best now. Some of that is probably just genetics. While Phil is tall, neither of Caleb's grandpas would be mistaken for professional basketball players.

Caleb's next appointment is with the cardiologist on June 11th. We should learn more about the plan for the rest of this year and next spring. Thanks for your thoughts and prayers and for following Caleb!

19 Months Old

Checking out the cows and new calves

In the back of my mind, I have always wondered if Caleb would be timid or reserved because of his slow start. This month, we have found out that it should not have been a concern. He is a totally normal little boy! If it looks like he is trying to climb the gate in the picture, it is because he is. He eats rocks, plays in the toilet, writes all over with the big kids' markers and destroys anything that he can get his hands on. He is as normal as he can get!

We also found out that he loves to slide (and that he can do it by himself).



Caleb has really enjoyed the nice weather we have had lately. He is loving being able to play outside. He'll grab his shoes and follow us around the house, hoping we will take pity on him and take him out.

Caleb had his last RSV vaccine this month. After battling with the pharmacy, we were able to get the last vaccine. Luckily, our pediatrician's office was a huge help as was our nurse at the Health Department. I am always amazed at how messy and difficult some of these things can be.

Caleb is still flirting with 20 pounds. He is now around the 0.5% percentile again. We think he may not be gaining weight because he is always so busy. Not bad for a kid with a defective heart.

We have met many wonderful heart families along our journey. One of the babies with a heart defect very similar to Caleb's required a heart transplant. Maggie got her new heart and is doing great. After spending five months in the hospital in Ann Arbor, she came home three weeks after the transplant.

I have asked for prayers for Gabby several times in this blog. Her family needs prayers again. They have brought her home so they can enjoy the time they have left with her. Her family lost their first daughter to the medical condition that Gabby has, but they are some of the strongest, most positive people we have met.

Ben is another little guy we met in Ann Arbor and is only a couple of days older than Caleb. He could use prayers too as he is dealing with some issues due to his heart defect. He is working hard in therapy to be able to sit on his own.

We are so very fortunate that Caleb is as healthy and as active as he is. I won't even consider complaining about the plumbing bill we had to remove the stuff that he has used to clog the toilet!

18 Months and Walking

Caleb is now walking! He will still crawl some, but he is walking more and more each day. Nothing in our house is safe. The Big Three do not find this amusing, but Caleb certainly does.

Caleb weighs 20 pounds. That puts him at the 0.8% percentile. He is now officially making up ground. It is not surprising. He is a very good eater, preferring sweet foods to vegetables, but he will eat almost anything.

He is talking more now. We play Momma/Caleb in the car. He yells "Momma" and I yell "Caleb". It is a very stimulating game. He also argues with the kids. They say "yes" and he says "no". He still calls Phil "Momma" though. Phil is dealing with it.

Caleb has been discharged from Early On and is no longer receiving any therapy. His goals were to be walking and talking and now that he is doing both, there is no reason for additional therapy at this time. He is right where he is supposed to be physically and developmentally.

Because of all of this, we are very happy that we decided to wait until next year for his next surgery. Now he will have an entire year to be normal and healthy (hopefully). Other than being small, you can not tell that he has had gone through what he has.

Thank you to everyone that purchased a heart for Faith's Angels. Together, we raised $350 for congenital heart defect awareness and research. That is amazing!

Seventeen Months and Taking Steps

Caleb is now seventeen months old. Last year at this time, we were in Ann Arbor while Caleb recovered from his second stage surgery. What an exciting and wonderful year this has been.

Last week, Caleb decided that he could stand up in the middle of the floor without holding onto anything. His balance is still not great (he stands like a sumo wrestler and swings his hips to keep upright), but he can do it. Sometimes, he gets so excited clapping for himself - he certainly doesn't lack self esteem - that he falls back down. He has also taken several steps. Walking is still just for amusement, not transportation. As far as we can tell, everything is working just fine and it is just a matter of time before he gets it all figured out.

Caleb had his third RSV vaccine today. He did fine in waiting room at the pediatrician's office, but as soon as we went to the exam room, he started crying. The bad thing about getting a shot once a month is that you obviously don't forget between appointments. After some screaming and giving the nurse some really dirty looks, he calmed down and we were on our way.

At today's appointment, Caleb weighed 19 pounds, 5 ounces. That puts him at the 0.5 percentile. He is still growing at the proper rate, just at the bottom part of the curve. To be at the 50 percentile, he would need to weigh 6 more pounds. The nice thing is that we are really getting our money out of the 9 month old pants.

Caleb still doesn't say many words. His occupational therapist said that he may put talking on the back burner right now while he is working on walking. He does say "Mama" for me, Phil and Karen (our great daycare provider). He will occasionally repeat a word you say - we've heard "hot", "no", and "down".

Overall, Caleb is still doing amazing. As far as we can tell, other than working with some modified circulation, he is a normal toddler. Who would have thought that we would ever be able to say that?

In an effort to help out the Congenital Heart Defect Community, we are selling paper hearts for $1 to help Faith's Angels. Faith's Angels is a group out of Sparta, Michigan that was created by Faith's parents after she died from a congenital heart defect. This group focuses on raising awareness and supporting CHD research. Eighty percent of their donations go directly toward research. Just this fall, they provided a four year research grant at U of M for $7500 per year. If you are interested in purchasing a heart and having it proudly displayed in the windows of Cogent Engineering in beautiful downtown Alto, please contact me at jen@cogentengineering.com. The hearts are sold in the month leading up to Valentine's Day, the official Congenital Heart Defects Awareness Day.

Merry Christmas and 16 Months Old

Merry Christmas!


Christmas with the Wieland Cousins


Hanging with Dad and Finally Growing Some Hair


Loving the Cell Phone

Merry Christmas!

We have had a wonderful Christmas, spending time with our families and celebrating all of the gifts we had before a single present was opened. We hope you were as fortunate.

Caleb is growing and developing on his own terms. He says about five words, but understands nearly everything we say. He is still not walking, but can get into whatever he wants. He will only stand on his own for a few seconds when he is distracted, but he will stand in his high chair as long as he can get away with it and will climb on anything.

Caleb has learned some new tricks. Now, when he knows that he is in trouble, you can see him make a conscious effort to be cute. He wrinkles his nose, tilts his head down and looks at you sideways. His teen years may be a real challenge!

After my last post, Caleb came down with the stomach flu and felt pretty crummy for about 7 days. After eating crackers to settle his stomach for a few days, he decided he didn't need anyone to feed him with a spoon anymore, he was going to feed himself. After a week of prodding, he will finally eat from a spoon again.

Now he has a runny nose, but I expect that at least until April. We seem to pass things from person to person in this house late spring. For a little guy with only semi-oxygenated blood and a diaphragm that only partially works, he sure can deal with a cold. Living in this house, that is a true blessing.

Caleb had his second RSV vaccine on Friday, so he is still protected against that. Dealing with the insurance company and the vaccine provider is proving to be all kinds of fun. This month it took three phone calls, one of which was over 30 minutes, but we were successful.

We are continuing to work on talking, standing and walking, but I have a sneaky suspicion that we will only make progress when Caleb feels like it!

Thanks for your continued prayers and interest in Caleb's well-being!

Cardiology Checkup

Caleb had his appointment with the pediatric cardiologist today and everything went very well. His oxygen saturation was 90% which is great for someone with his heart defect. I am thinking that the sensor at the pediatrician's office is not very accurate - our last couple of readings there were in the upper 70's.

Caleb's blood pressure was good and his EKG was normal for him. The cardiologist was happy with how he is looking and how he is developing. He is ok with his growth, he said that maybe he will just be a little guy.

Caleb's Enalopril was increased to adjust for his growth and he still gets 1/2 of a baby aspirin each day.

Because it has been five months since we have seen the cardiologist, we had several questions:

What is the timing for the last (hopefully) surgery?

The timing for the last surgery is mostly up to us. Most kids have the surgery between 18 months and 4 years. There are two different ways that this surgery, called the Fontan, is performed. The surgeons in Ann Arbor usually prefer the surgery that is done on younger children and that is what we assumed we would do when we left Ann Arbor last year. Now, looking at Caleb and how small he still is, we are thinking that maybe the Spring of 2013 would be best. Caleb would have another year to grow and get stronger.

Why is Caleb on Enalopril?

Enalopril is technically a blood pressure medication. It dialates the blood vessels and lowers blood pressure. This makes it easier for his heart to pump. There are no concerns with Caleb's heart function, it is just a standard measure to make things as easy on his heart as possible.

When will Caleb have another echocardiogram (echo)?

Because Caleb would need to be sedated to get a good echo (a detailed ultrasound of his heart), the cardiologist does not want to do one unless there is a reason to. Everything about Caleb's heart looks and sounds good and we are not seeing any problems at home, so there is no reason to do an echo at this time.

Things are going so well, Caleb does not need to go back to the cardiologist for six more months and we could not be happier.

While Caleb has turned out to be a textbook heart baby after his first surgery, some of the babies that we met in Ann Arbor are dealing with some major health problems. We would appreciate it if you could say a prayer for Maggie and Gabby. Gabby has other health issues in addition to her heart defect and her future is quite uncertain. Maggie has the same heart defect as Caleb and her heart did not enjoy the new circulation after the last surgery. She is in the hospital awaiting a heart transplant.

Phil and I really appreciate the love and concern everyone has shown Caleb and the rest of our family. Thank you for all of the thoughts and prayers that have gotten us to this point!

15 Months Old

Caleb is now 15 months old. He officially has two bottom teeth. He bit himself the other day and learned that having teeth is a responsibility!

We are making some progress in the walking department. He has stood on his own several times. He usually needs to be concentrating on something else and he sits down when he realizes that he is standing, but he can do it. He is also getting to the point where you can see that he is thinking about walking, but crawling is so much faster.

Caleb is saying "Mom" and "Uh-Oh" with great regularity now. Today, he yelled "Mom" to get my attention. It's cute now and will get old really soon! He also says "Uh-Oh" when he throws something on the floor which is very frequently. I think he was talking to Phil on my cell phone this afternoon. I heard a lot of "Hi" and "Da".

Now our focus is kissing. He has learned to blow kisses and tries to kiss us now. It's like being attacked by a very wet fish.

Caleb loves to climb the stairs. He has not figured out how to come down yet. Whenever we try to teach him to go down backwards, he realizes there is one more stair to climb and up he goes again. He climbs to the top and yells for someone to come get him. He is pretty sure the rest of us are his professional support staff.

Caleb had his 15 month well baby checkup yesterday. His weight was 18 lbs, 9.5 ounces. That puts him at the 0.4 percentile. He is around 10 percentile for height and 75 percentile for head circumference. His oxygen saturation was 77%. Overall, the pediatrician was very happy with his progress. He was not worried about the delayed walking or talking. He said that being a boy and the fourth child, we should be happy if he talks before kindergarten! He also said lollipop kids (little bodies and normal sized heads) take a little longer to walk because they are top heavy.

Caleb is still caught up with his vaccines and with the exception of flu shots and his RSV vaccine, he is all set until school! On that same note, after some fighting with the insurance company, Caleb will be getting the RSV vaccine again this winter. That is a huge relief with all of the bugs that come into our house.

Around Halloween, Caleb decided he didn't need a bottle anymore, so now he is totally a cup guy. That was a completely painless transition for all. I am guessing getting rid of the pacifier will not be that easy.

Caleb has an appointment with the cardiologist in December, so we will have more detailed information as to how he is doing from a heart perspective.