We're home

Luke is eating and snoozing in the other room, so I thought I would give you guys an update. Luke's choanal atresia repair went really well. His nose is finally open - really open. The surgeons were pleased and thought it might actually take this time. Dr. Hill (who is quite an experienced ENT) said it is the most difficult CA repair he has ever done, but that he finally has a good feeling about it this time. Luke's poor little nose is swollen and still draining, but he seems to have started feeling better. The whole time at the hospital he just laid on his back in the crib. He smiled a few times, but was not himself. Then just before we left I got him dressed and that was his cue to get back to normal. He turned over and crawled in the crib and pulled up on the side. Then in his stroller he was bopping around and flirting like usual.

The not so good news from yesterday is that Dr. Hill was not able to remove the granuloma from inside Luke's airway. We didn't even know that was an option. So now the only way to get it out is to do an open procedure (basically opening his trachea and then redoing the stoma like it is a fresh trach) or removing it when doing a Laryngotracheal Reconstruction (LTR). One of these should happen on May 7th. With the first option Luke would have to stay in the hospital for a week as his new stoma starts to heal. Then after he went home we would try capping and seeing if he is ready for his trach to come out. If the capping doesn't work or Dr. Hill decides on the 7th that reconstruction is necessary, a single stage LTR will be performed. This is a pretty major surgery in which a cartilage graft is taken from Luke's ribs and inserted in his trachea to enlarge it and stabilize the area that the trach stoma is in. He would be mainly sedated for a week and be in the hospital for a few weeks (I think). The main benefits of the first procedure are that it is much less invasive and removing the trach should be less traumatic (for all of us). The main benefit of the single stage LTR is that the trach would come out with the surgery, a much faster process. But basically it comes down to whatever Dr. Hill decides is the best choice for Luke. Whichever way it goes, Luke has a good chance of being trach-free sometime this year.

We were surprised yesterday to find that Luke had a sedated hearing test scheduled. And then we were even more suprised by the results. Despite the fact that Luke has seemed to respond more and more to sounds, both with and without his hearing aid. The hearing test results weren't very good. The test showed an 80 db loss in right ear and a 90+ db loss in his left ear (both severe losses) unaided. And the biggest surprise - it showed a 60 db loss even with the bone conduction aid. As far as we were aware, Luke had normal hearing with his bone conduction aid. We are trying not to get too worried and go more with what we see Luke doing than the results of this one test. No matter what any of Luke's tests show, he is going to develop some form of communication. We just need to figure out what is going to work best for him. The test is going to be repeated when Luke's stints are removed in 6 weeks, so lets just hope these current results are an anomaly.

Here is Luke's upcoming surgery schedule:

February 26: Third and final orchiopexy surgery with urology
March 26: Stint removal and hearing test
May 7: Granuloma removal, checking Luke's nose to see if it is still open, and possible LTR

And in the midst of all that are the boys' birthdays. Luke will be 2 next Tuesday the 17th. And Sam & Gus turn 7 on April 30th. I promise to keep you all updated about what is happening. I will upload some photos too, as soon as I can get Rob to install the software that came with our new camera.

Luke is still keeping busy with VitalStim and his Bell Center and ARC therapies. And Sam & Gus are really enjoying school and Cub Scouts. (I have to post a photo of them in their uniforms - they look so cute!). So it will be a busy Spring just like last year.

Luke's surgery tomorrow

In this much overdue post, I just wanted to let you know that Luke is having surgery tomorrow. It is with ENT - a choanal revision (basically a redo of his initial choanal repair). This time Dr. Hill is going to take away the back part of the septum in the hope that Luke's nose will finally stay open. Luke is going to get stints for 6 weeks again. Both times he has had them for the 6 weeks which included his birthday (Luke turns 2 on the 17th). Dr. Hill is also going to laser away the granuloma inside Luke's trachea near the trach stoma. This should allow Luke to wear his PMV and babble again. We are expecting Luke to stay in over night, but hopefully not longer. It should be fine and pretty routine, but my nerves are acting up anyway. You would think this would get easier, but I think it gets harder in some ways.

We will try to update tomorrow or Saturday at the latest about how everything went. Until then, your positive thoughts and support would help a lot! Thanks!

Luke's Vitalstim

Vitalstim has been going well for Luke, but he is still aspirating. At least he is becoming less averse to having things in his mouth, and most of the time actually likes the games his Vitalstim therapists play with him. The plan at this point is to do another swallow study after 30 therapy sessions which should be around the beginning of December and see if he has made any improvement in coordinating his swallow. Then we are going to take a little break and go back to Vitalstim after Luke has had a few more surgeries, probably sometime in Spring. We have a lot coming up and I owe you all a big post about Luke's last ENT surgery and visit.

Here are a few photos of Luke having Vitalstim. I am amazed at the stuff they can get him to tolerate orally that I haven't been able to. Patience, patience, patience seems to be the key.

Halloween photos

We had a fun Halloween this year and even got to go to a party at Lara & Daniel's house.

Sam as the Pokemon Marill, Luke the pumpkin, Oona, a little witch,
& Gus as Pharoah from Yu-Gi-Oh

The pumpkin was a good choice for Luke because it was so warm.

Quite an honor

Sorry it has been so long between posts. We have a lot of things to update about and pictures to post, so I will try to get to it soon.

I wanted to start with a surprising honor we received last night. We were invited to The ARC of Shelby County's annual awards banquet, where our family was given the "Inspirational Family of the Year Award". We felt so honored to be chosen for this award mainly because it means that people and an organization that we respect so much, think highly of us too. I was especially glad for Sam & Gus, because they were so proud. There are a lot of things that Rob and I don't get to do with them and for them and so many times when Luke's needs come first because they are medical and more pressing. So this award was like a recognition of the sacrifices Sam & Gus make and the good-natured way in which they make them.


One of the most wonderful things we have found on our journey since having Luke is his therapists and the other members of his Early Intervention team. Between The ARC, The Bell Center and Children's Hospital over 2 dozen therapists have worked with Luke and we have not had a bad experience with any of them. Each of them is special to us for different reasons. One of the things that I love about Luke's ARC team is how accessible they are. I don't hesitate to call any of them if I have a question or need help. We never have to feel like we are in this alone - we always have backup. We know too Luke isn't just another patient to them. They care about him and us, and I am sure they feel the same about the other kids they see. It can be easy to get discouraged about how long it sometimes takes for Luke to reach milestones or achieve goals. But his therapists are always so encouraging and help keep us focused on all the progress Luke has made and is making every day. If any of you read this, I hope you know how deeply we appreciate the contribution you make to Luke's life and to our whole family.

In Memory of Lucas Weindorf

It has been a while since I have posted, and I would much rather not be posting under these circumstances. Lucas Weindorf lost his battle against Pulmonary Hypertension today. He was almost 17 months old. Rob and I are both so very saddened by his loss. Lucas and his family mean a lot to us. I thought our boys would grow up together. Even though we live far apart, this wonderful age of technology allows us to make friends and share experiences with people we never would have met before. Lucas' mother, MK, has been a great support to us as we have shared this journey through CHARGEland. If you would like to read more about Lucas or leave a message for his family, please visit their blog at http://mkweindorf.blogspot.com/


Lucas was such a beautiful, sweet boy. We will miss him so much.

G-tube update

Luke did get his g-tube on the 21st like we expected. It almost didn't happen since surgery had left him off their list, but a terrific nurse got it sorted out right at the end of the day on the 20th. Luke also had his second orchiopexy in which brought down his right testicle. He still has to have one more surgery where they bring down the left testicle which will probably happen in February or March next year. This surgery seems to have been Luke's most difficult so far. He stayed in the hospital for 4 days and had a good bit of pain, transitioning to OTC pain medicine (Tylenol) only on the last day.

Getting Luke up to speed on his g-tube feedings has happened more slowly than we expected. His goal is 5 bolus feedings of 6 ozs. each over the course of the day. This puts the feedings at about every 3 to 3.5 hours. He is currently at 1 feeding of 6 ozs. and 4 of 5 ozs. and they aren't bolus yet, but given by a pump over 45 minutes to an hour. At first Luke was throwing up anything over 4 ozs. like his stomach was just too full. We put him back on Reglan to help speed up his digestion and the throwing up has gotten much less. Unfortunately he got a cold in the last week and some of his hard coughing is making him throw up, which happened a lot in the past with his bottle feeding. The good news is that Luke already seems to have gained a few ounces going from 17 lbs. 6 ozs., when he was admitted on the 21st, to 18lbs. 1 oz., yesterday, or from 7.9 to 8.19 kg (both with clothes on). So if his weight gain is good, the nutritionists aren't as worried about getting his feeding up to goal.

With the exception of what is lost through throwing up, Luke's feeding is finally really consistent. The pump is wonderful for that. It is so easy to use and taking Luke out while he is eating is a breeze. The pump has a little back pack and it just comes right along with us. Now Luke can eat in the car and the stroller and, the best part, even when he is asleep! Another benefit of the g-tube that we have noticed is that Luke is finally well hydrated and actually producing several wet diapers a day. And the strangest thing of all is that Luke's constantly draining ears have almost totally cleared up. His left ear (the one that was cleaned out) has nothing draining, and the right can only be seen when we clean out his ear with vinegar water each night. Now, so far, we aren't seeing a big difference with his hearing, but I would have to think that there is at least some improvement. Luke did make a new sound yesterday - a very brief buh, buh, buh. When he has another booth test next week, we'll see if they can tell a difference.

The other news is that Luke finally got into VitalStim. He starts next Monday, so I will keep you all updated about his progress there.