Sunday, October 28, 2012

26 Months Old


Two years ago today, we brought Caleb home from the hospital after 72 days, four surgeries and enough stress to make a large amount of my hair to fall out. I never thought I would say this, but now our time in Ann Arbor seems like a dream or something that happened to someone else.

Caleb is still doing great. He is back to daycare now that the big kids are in school. He is talking all of the time now and sometimes we understand what he is saying. He is growing out of his 12 month clothes. He is still a flirt and far more outgoing than any of the older kids have ever been.

I realized how much we take for granted when we were on vacation a few weeks ago. We were swimming in the hotel pool and someone asked about his scar. At fun night at school last week, a little girl asked about his scar. Hopefully, Caleb will be proud of his scar. It comes up so high on his chest you can see it unless he is wearing a very high collar. I am assuming that being Phil's son, he will come up with some bizarre story to tell people. It will probably involve hand to hand combat or a shark attack. I am guessing that he will use it to his advantage with the ladies!

Friday, August 17, 2012

Two Years Old

Today Caleb is two years old. He is as normal as a two year old boy can be. He likes everything a little boy should like - dirt, rocks, mud puddles, dogs, cows, popsicles, etc. He plays in places he shouldn't like the toilet and the duck pond that Grandma Dougherty had at the family reunion.

Using the duck pond properly

Using it Caleb's way

Since the last post, Caleb has been to the pediatrician. He needed a check up before he could have sedation for his echocardiogram, and we were able to get his two year check up at the same time. For the first time in a year, he did not scream when we walked into the exam room. He didn't even cry when the doctor came in. He weighed about 22 pounds and was 31 inches long. This puts him a little over 1 percentile for weight and a little under 1 percentile for height. The nice thing is that we are really getting our money's worth out of his clothes. A lot of his 12 month stuff still fits. Again, the doctor was happy because he is still growing normally.

As far as we can tell, Caleb is right on track developmentally. The pediatrician said that he should be saying about 50 words, but we could expect less because he is a boy and the fourth child. We think he says at least 50 words, and so far, all of them are acceptable in polite company. I think the Big Three are working on teaching him some not so acceptable words, but so far, none have stuck.

Overall, he had a great appointment with no concerns whatsoever.

Wednesday, he had his sedated echocardiogram. He had an IV to put him out. The nurse got the IV in on the first or second poke. Caleb was not happy, but Phil and I were ecstatic that she was able to get the tiny vein in the squirming, screaming toddler. The good news is that Caleb has a couple of nice veins in his arms. Hopefully we can keep those working because a bunch of his other veins are toast from his earlier surgeries and procedures.

The doctor was happy with the echo and said everything looked good. His working valve is not leaking, he has good squeeze with the good ventricle and the pulmonary arteries are good sized and not narrowed. He does have a small leak around a patch that they had to put in during the last surgery to re-direct his blood flow, so that may be why his oxygen saturations have decreased. The patch will be removed during the next surgery anyway and he is growing and developing properly, so we are good to go for another six months.

It was interesting that when Caleb was sedated, his oxygen saturation jumped up to the mid 80's. When he is not running around like a madman, he is not using as much oxygen. Hopefully this means when he is sleeping, his body and brain are getting the oxygen they need to stay healthy and grow properly. Based on how well he is doing, I have got to think that this is the case.

We have enjoyed a great and very normal summer with our family. We can never thank you enough for keeping us all in your thoughts and prayers.


Monday, June 11, 2012

Cardiology Checkup

Caleb had his checkup with the cardiologist today. He did pretty well considering he is not a fan of going to the doctor after all of his RSV vaccines this winter. He cried in the elevator, but had a ball running around the waiting room.

His EKG looked normal for him and his heart sounds good. The cardiologist wasn't terribly excited about his weight (a smidge over 21 pounds), but he said that he was ok with it if Caleb's pediatrician was. The pediatrician is ok with it because is growing right along the slightly less than 1 percentile curve. He isn't catching up any, but he isn't losing ground. Caleb eats very well, but seems to burn off everything he eats. He doesn't really ever sit still. He runs and then sleeps.

Caleb's oxygen saturations were not as good as they have been. In December, he was at 90% or so. Today, he was in the upper 70's. The cardiologist said that some kids do drop as they get more active and Caleb is not at a level that is dangerous for him. So for now, his body is not telling us the surgery has to be sooner rather than later. The timing of the surgery is still "elective" and we are thinking it will probably happen next spring. We want to miss the major winter bugs but give him time to recover so he can enjoy the summer. I do find calling open heart surgery "elective" a bit ironic!

Caleb will have a sedated echocardiogram (detailed ultrasound of the heart) sometime this summer. He has not had an echo since he was discharged from his last surgery in January 2011. While we are not keen on sedating him again, Caleb's fear of doctors and his active nature would probably result in 45 minutes of screaming - something none of us want to experience!

Overall, the appointment went well and hopefully the echo will show that everything is working the way it is supposed to be.

Sunday, May 20, 2012

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!

Tuesday, March 27, 2012

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).

video

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!

Monday, February 20, 2012

18 Months and Walking



video

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!

Friday, January 20, 2012

Seventeen Months and Taking Steps

video

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.