Merry Christmas!

Joseph continues to grow and he has made it through his cold. He has a persistent cough but it is much better. The doctors said that he still needs to hunker down at home but his sisters can hold him if they wash their hands. We extended that to include the Carmelite sisters who have adopted him through their prayers. I know there are many who are praying for him and you would like to see him as well but the doctors did say "just the sisters." Here is a picture of Joseph with a few of his adopted "sisters:"


With friends like this it is no wonder he is doing better!

Joseph has made great strides with his talking. He jabbers quite well now and practices all the time. I caught him in a video clip saying "Merry Christmas!" However you have to listen closely and use your imagination ears:

This is truly a wonderful Christmas and one that we will never forget. It is the first Christmas for Joseph and our family as a group of seven. It feels like our family has grown by more than one little baby. He has come into this world with an amazing support team! We have been fortunate to have so many people around us to help with everything the last 5 months have thrown at us.


This is the season for gifts and I have thought many times about the gift that has been given to us by Joseph. He has given us PERSPECTIVE. It is a remarkable gift. It makes the reason for the season crystal clear. It shines through all the shopping, wrapping, decorating, cards, events and dinners. He has shown us the importance of the gift of life and respect for how precious and miraculous it is. We love all that Christmas brings but we will never forget this Christmas because Joseph and his miracles have pulled together and made us stronger than we ever thought possible.

The kids sing a song that we simply call "The Thankful Song." It comes from a Veggietales video. It contains one of my favorite lines; "a thankful heart is a happy heart." It is absolutely true. To be happy is to be thankful and to be thankful is to be happy. With that in mind , we are joyfully happy for all you have done, for the gift of family and friends and for the gift of Joseph and all the potential he has. We are grateful for the gift of faith, the power of prayer, the strength of the Holy Spirit and the love that connects us. May you have a blessed Christmas and an AWESOME New Year.

Love,

Kenny, Mary, Clare, Katherine, Megan, Elizabeth and Joseph

The Multiplier Effect

Joseph gets his first cold.
We did our best, but the outside world has gotten to Joseph and he has his first cold. He will be fine but when a child has gone through what Joseph has gone through, you cannot help but be more nervous when something as common as a cold hits. We are more observant, but Joseph seems to be handling it fine. He just has this awful barky cough. He is still happy and fun to be around but his cough keeps us on alert. His heart condition, in this case, multiplies the minor negative of a cold into something more. We worry more and grow more protective than we would normally.
But on the flip side--there are so many fun little things that are multiplied into greater events because of his condition. For instance, I am elated when he reaches a new milestone with his weight. He needs sleep, so when he takes a long nap it is cause for celebration. When he gives you a big smile it is somehow sweeter when considered in the context of all he has been through these four short months.
It is a fact that we enjoy life more because of our contact with this small child. He has increased our awareness of our family and friends. We certainly take fewer things for granted and everyday holds more joy because of Joseph. Our faith, while challenged, has multiplied and is now stronger. We have increased our medical knowledge. We have stronger ties to friends even though we have seen them less. I really like that the good things are multiplied to outweigh the bad.
I started reading a book called "The Wet Engine" by Brian Doyle. The author writes about his experience with his son who has a heart condition that has required several surgeries. I have only read a few chapters but already the book has had a big impact. Brian writes about his experience with the doctors and he could easily be writing about Joseph's doctors. It is good to read about others surviving the experience and coming away with a deeper appreciation of life, faith, medicine and the heart.
It is very busy around here as the kids prepare for their Christmas programs. Good fortune to you all as you prepare for Christmas. Remember to keep it all in perspective. May the miracle of Joseph multiply all the good things we share this time of year.

God bless,

Kenny

p.s.--I know---I still owe you some new pictures--

A Fine Doctor Visit

The visit to the cardiologist was very uneventful. In Joseph's situation that is a good thing. The doctor is happy with his progress and very happy with the increased blood flow due to his angioplasty. There is still an issue with the aorta and it will still need to be taken care of at some point, but for now the word is: "go home and enjoy the Holidays." I asked the doctor if we should be overly concerned at this point and he said no. Joseph is doing well and he is thriving. He is on a small dosage of a medicine to help with his blood pressure. We do not need to come back to see the cardiologist for a month. To top it off he is cleared to have the tubes in his nose removed. That will be done in a short surgery to be done within a month. The short surgeries are easy compared to what he has been through.

Joseph continues to be a happy and easy baby. He has a bit of a cold right now but still gives us a smile every time he sees us. He eats well, sleeps great and keeps getting bigger. He is 15 pounds 11 ounces and growing out of his clothes. This is a good thing!

The Christmas season takes on a special meaning this year. Joseph continues to give us the gift of perspective. We are able to look at things with a different view than before. We have an increased appreciation for Family, Faith and Friends. We are blessed with the gift of this new life that has us thinking and praying about hope, love, commitment, faith, charity community and how very fortunate we are.

I love this time of year and I even like all that goes into getting ready for Christmas. This year it is better than ever. I hope you enjoy the preparation and may you have a wonderful Christmas and Holiday Season.

All the best,

Kenny

p.s. I will post a few pictures this week and I will continue to write every weekend. Thank you for your interest.

Tune in on Wednesday

We visit the cardiologist on Tuesday, December 11. I will write a blog about the visit that will post late Tuesday night.

Kenny

A Longer Journey

This is yet another blog that has been tough to write. I hoped that there would be only good news at this point but that is not the case. On Tuesday after the angioplasty we learned that the narrowing of Joseph's aorta was more severe than hoped. It was not a complete surprise to the cardiologist but it was a tough shock for us. Joseph has been doing so well that we expected that he would come through with better than expected results. It took awhile to get used to the news. The situation is this: The aorta is the large artery that goes over the heart and drops down to the lower extremities. It has three main branches as it curves over the heart that send blood to the brain and upper extremities. After going over the top of the heart it drops down before branching to the lower extremities and most of the organs. It is after the three branches that Joseph's aorta narrows. Just like a kink in a hose the pressure is higher before the kink and lower after the kink. It was thought that the pressure differential was 30 points (about 5 is normal) before the angioplasty. When they did the angiogram to get exact measurements, they found that the pressure differential was 55! It is a great thing that they decided to do the angioplasty sooner rather than later. The normal aorta width for an infant should be about 7 millimeters. At the narrowed point the aorta was shrunk down to 2 millimeters. This was bad news. The ballooning process can only stretch the aorta so much. They were able to get the aorta stretched to 4 millimeters and that was a good outcome all things considered. A 100% improvement! I realize I am being more medical but I hope this is at least a little interesting. For more info on "coarctation of the aorta" click on this link:

http://www.chdinfo.com/aa/aa101297.htm

It has some good info although not all of this applies to Joseph's condition.

Here is a diagram of the heart that shows it better than I can explain it:

The narrowing occurs just about where the end of the arrow is where it reads "to lower body"
<--------- The plan now is to see how the aorta responds. Joseph could be in for another angioplasty or even another open heart surgery. I cannot even get my mind around that possibility. There is also a possibility that the aorta could open up on its own. I am really pulling for the miracle healing of his aorta. We see the cardiologist on December 11 and hopefully we will get some more information then. While I am writing about the cardiologist I wanted to tell a story about him. Mary and I were in the recovery room with Joseph. We had already talked to the doctor who performed the angioplasty and we were having a tough time understanding what the news we received meant for Joseph. We requested to see the cardiologist if he was available. We were told he was very very busy but he would try and stop by. Just before we were to go home with Joseph, the cardiologist walked in. He said hello to me and shook my hand but he was on a mission to talk to Mary. Mary was holding Joseph as the cardiologist walked up to her, put his arms firmly on her shoulders, looked her in the eyes and said, "he is going to be OK--you need to know that he is going to be OK." It was a huge relief to hear him say that, but what was amazing was that he said it so directly to Mary. Even before Joseph was born I learned that the hopes and dreams of our children rests mostly on their mother's shoulders. This is the case in most families. Mothers have an amazing bond with the children. But as well as carrying they hopes and dreams, mothers also carry the fear and anxiety that comes with having children. I am not saying that the dads are not connected, I am just saying that the moms carry it more and on a different level. It was incredibly astute that the doctor knew exactly what Mary needed to hear and it was more powerful that he told her while holding her shoulders. He knows what she has been through and he knows that we have more to come. It is things like that seeming simple gesture that make him a truly gifted doctor. It was a moment I will always remember. Since you made it this far reading the blog I will reward you with a small video of Joseph talking: (OK--it is more of a grunt but it is still fun to watch)

We are still so thankful for all the support from so many. We will never be able to properly convey how much we appreciate all you have done. Please keep Joseph in your prayers and know that you are in ours.

In gratitude,

Kenny, Mary and the kids.