Let's get up and bounce - video

We have been putting Luke in his jumperoo for a while now, but today he finally really got the hang of it. He is also starting to play with the toys more. I suppose before he had to expend so much energy on keeping himself up (which he still hasn't mastered quite yet) that he didn't have any left over to reach for all the beads and lights in front of him. Just like all babies, every day we see him learning new things and doing more. It really is wonderful. I was just thinking about that saying be careful what you wish for... With Sam and Gus everything went by so quickly. I felt like I never had time to stop and savor one accomplishment before they got to the next. Now with Luke things take so much longer for him. His developmental delay slows things down just like I had wished for so long ago, but wouldn't, of course, have wanted to happen in this way. Hope you enjoy the video. At about 8 seconds into it you can just hear one of the new noises Luke is making around his trach (meaning he is passing some air up past his vocal cords and through his mouth now). Look how much more hair Luke is getting on the sides too.

Surgery update

Luke's CA surgery has been rescheduled for January 17th, exactly 1 month before his first birthday. Hopefully they will be able to remove his central line at the same time. Luke is also scheduled for an outpatient urology surgery on January 24th, but from what I understand there should be no conflict. Poor boy though to have 2 surgeries a week a part. I have been a nervous wreck since this whole scheduling fiasco started, so I am relieved to know that it is settled at least. Sam and Gus are with Nonna and Papa so Luke and I have been on our own today. He has been very happy and playful. He has started eating a bit better, so I hope he uses this time to gain weight. Luke got his RSV shot yesterday and he only weighed 1 ounce more than the previous month which puts him just under 14 lbs.

Surgery postponed

We got a phone call from the ENT's office today canceling Luke's surgery tomorrow. As you can imagine, Rob and I are very disappointed. Luke has already had to wait 2 and half months more than he should have and now this. We haven't gotten a new date yet, but it looks like 2 or 3 weeks from now is the best we can hope for. I think they wanted to put us back at the end of the line - the end of February - but hopefully we can get them to fit Luke in instead. This is all so incredibly frustrating. Luke having his nose repaired is the first step in a long line of things we need to do to get his trach out, and hopefully get his ears cleared up. I am trying not to pin all my hopes on what things will be like "one day" after Luke's trach comes out, but it truly feels like all our lives will be so much better when we don't have to be so focused on every breath Luke takes. I already feel like we have given up so much of Luke's life to this waiting. It is so hard knowing what your child needs and feeling like you are completely powerless to make it happen. We will let you all know when we have a new date.

Christmas

We had a wonderful relaxing Christmas at home with friends and family. On Christmas Eve our friends Lara and Daniel came over with their daughter Oona. She is such a doll. We had a great time catching up in between trying to keep track of four kids. Then on Christmas morning Nonna and Papa (my parents) came over and spent the day with us. Sam and Gus were thrilled with all the presents from Santa, their grandparents, aunts, uncles and cousins. The house still looks like a toy bomb exploded in it (and probably will for weeks to come). Rob actually got to take a nap and catch up on much needed sleep. Luke has been coughing a lot during the night and Rob or I (mostly Rob) has to get up and wipe Luke off and suction him. While Luke tends to sleep through, Rob and I do not. But I still have it better than my other half because I am a great sleeper and fall right back to sleep. R, on the other hand, usually drops off an hour or so later right before the coughing starts again. We also have it worked out so I give Luke his last bottle and Rob gives him his yogurt and first bottle while I get Sam and Gus ready for school. This means Rob has early mornings and no chance for sleeping in. So Rob got his wish this Christmas - a lovely (though too short) nap. While he was doing that, Mom and I got to spend some time together getting dinner ready. We had prime rib, twice-baked potatoes and ceasar salad. Kind-of makes you wish every day was Christmas.

Updates since last Carepage post

Just to bring everyone up-to-date, we have had good news since our last post in October on Luke's Carepage. A CT scan of Luke's head was "encouraging" according to Dr. Hill, Luke's ENT. Dr. Hill is going to try to repair Luke's choanal atresia (the bony blockage in Luke's nose) by going through Luke's nose rather than his palate. The surgery is scheduled for this Friday, December 28th. This would be an easier surgery and recovery for Luke with less side effects, but even if Dr. Hill has to go through the palate instead, Luke's nose should finally be opened this time. This will be Luke's fourth time going in for the CA repair, so we are more than ready for this to finally happen. Luke will have stents (plastic straws) in his nose for a month or two after the surgery to keep his nose open and prevent it from scarring closed again. Once his nose is open and stable (fully healed), then we will work on getting the trach out. As far as we know that only reason he needs it is because of the CA, but he has had it so long that getting him to use his nose and mouth will probably take some time.
Another thing we learned from the CT scan is that Luke's ear structures appear normal. He has semicircular canals, which affect balance and are often absent in children with CHARGE, and he has the normal number of turns to his cochlea. Rob and I were shocked by this, because we thought we might see defects to account for Luke's hearing loss. He has had 3 ABR's that showed no brain response to sound. Earlier this month Luke had a booth hearing test and the results were much better than we had hoped. We didn't get any information about his hearing unaided. But with a bone conduction hearing aid Luke's responses were in the upper end of the normal range of all the frequencies except the highest pitches. This should mean that with a bone conduction aid Luke could hear most of the sounds of speech, except for high, soft sounds like "s", "f", "sh", etc. And when/if the fluid in Luke's ears clears up he may be able to get regular hearing aids that could put even those soft sounds within his hearing range. We were able to borrow a bone conduction aid from the HEAR center at Children's and we have been trying to get Luke used to it. So far he has not been crazy about hearing and/or wearing the metal headband hearing aid. During the surgery on Friday Luke is having another ABR, but this time with a bone conduction aid. Hopefully the results will be as good or better than we got in the booth. If Luke can hear speech well with an aid then he won't need cochlear implants.

Background

My plan was to write here about has happened with Luke since he was born. But once I realized how long that would take me, I decided to move to plan B, which is to start from here and catch up as I go. Much of the information about Luke's early days is already on the web on his Carepage. If you would like to take a look, please visit www.carepages.com and look up LukeBorkent2007, the title of Luke's page. If you have any questions please ask in the comments section, and I will be happy to answer.

Our New Blog

Hi Everyone!

Welcome to our new blog. We named it 3 Little Bees in honor of our 3 Little B's - Sam, Gus & Luke - who this blog is all about. I will try to post here more often than we did at Luke's carepage, so you can all stay updated about Luke's progress and Gus & Sam's exploits as well. Thanks for joining us here! Don't forget we would love to here from you too, so please write back often.

Take care and we will talk to you soon,
Candi, Rob, Sam, Gus & Luke