Mercedes Marathon

Many of you know that Rob's friend Kenneth ran in the Mercedes Marathon to benefit The Bell Center in honor of Luke. Many of you also made donations to this cause. Thank you so much for showing how much you care about Luke (and all of us) by doing this! I just wanted to share an article that was in Sterne Agee's newsletter about the event. Thanks Kenneth for working so hard to help Luke! As you will read in the article, thanks to everyone's generosity Kenneth raised $7,130 for The Bell Center. Rob and I were very touched by each and every donation.

This is The Bell Center's display board at the marathon. And as you can see Tosha's wonderful photo of Luke is front and center.

Kenneth Hardin Runs in the Mercedes Marathon

On February 10, MIS employee Kenneth Hardin kept his pledge and ran 13.1 miles in the Mercedes Marathon to help support the children who attend The Bell Center for Early Intervention Programs. Kenneth ran in honor of Luke Borkent, son of Rob Borkent, another MIS employee. Luke was born with a rare condition called CHARGE Syndrome, which can cause life threatening birth defects, including complex heart defects and breathing problems. Most children with CHARGE also have hearing loss, vision loss and balance problems which delay their development and communication. You may remember Luke from the article about him in the November, 2007 issue of Ink. Luke was born with a bone completely blocking his nose and has been given a tracheostomy to breathe until, through a series of surgeries, his nose can be repaired. He also has a severe hearing loss, low muscle tone and global developmental delays. The Bell Center provides Luke with physical, occupational, speech, and cognitive therapies as well as nutritional counseling in order to help him meet these challenges.

In the fall when Kenneth learned that he could help Luke and other kids like him, he eagerly accepted the challenge and pledged to run the half marathon. In exchange for this immense physical effort he asked others to support him by donating money to The Bell Center. Kenneth was given that support and was able to raise $7,130 for The Bell Center children. Many Sterne Agee employees were among those who contributed to help Kenneth meet his goal and both the Hardin and Borkent families would like to thank all of you who donated.

On the Friday before the Mercedes Marathon, Kenneth and Rob went to The Bell Center to watch the children’s race. Many of the children who participated had to use walkers or have other assistance to make it the short distance to the finish line. Some struggled with every step. But they all finished. Kenneth knew that if these children could make it to the finish line with all the challenges they faced, then so could he. Unfortunately Luke was not able to attend either The Bell Center children’s race or The Mercedes Marathon to help cheer Kenneth on. He had just had his second surgery to help repair his blocked nasal passages the day before. But a week after the Mercedes Marathon, Luke was able to sit up and enjoy a few bites of birthday cake at his first birthday party. The help children get from The Bell Center is invaluable in promoting their development and the only way they can receive that help is from the generosity of donors and fundraisers. Thank you again to all who supported the event.

Kenneth with Wendy Allen (who also ran the half marathon in honor of Luke) after the race

Luke's surgery

I just wanted to let you all know that Luke is home and everything went well today. Dr. Hill decided he didn't need to remove Luke's adenoids right now, so he took out the stints. Yeah!!!! It is already so nice not to wipe every few minutes and to see Luke's cute little nose again. Better news still is that Dr. Hill has opened up Luke's nose as much as he thinks he needs to right now. He wants to have a look again in 6 weeks and see if the openings have healed and if they are still where they need to be or if they have narrowed from scar tissue. If the choanae have closed at all then he will dilate again and check Luke's nose in another 4-6 weeks. If Luke's nose has stayed open and healed then he won't need any more surgeries for a while and we can figure out what needs to be done to ween Luke off the trach. I think Luke will probably have to have a few more dilations, but it is wonderful to know that Dr. Hill has been able to get to a stopping point and it is just a matter of holding ground. If the best were to happen in 6 weeks it will still probably take a while to get Luke decannulated. Basically he has to breathe with his trach capped and training him to do that for longer and longer periods could be a slow process. Rob and I are both just so happy that we are moving in the right direction!

Luke's hearing test went well yesterday. They tested with his bone conduction aid and he was able to turn to show that he had heard noises. We don't think he turned toward everything he heard, because he is just not there developmentally. He mostly likely only responded to noises that interested him. Luke will get booth tests done every 3 months for the next few years to try and get an accurate picture of what he is hearing and if his hearing is fluctuating or improving. Our next step now is to buy Luke an aid. While the BAHA (Bone Anchored Hearing Aid) would be nice because it comes on an elastic band that is easier to keep on, we will probably end up going with the regular bone conduction hearing aid like the one he is currently borrowing. Since we don't really know how Luke's hearing will change in the next year or two it is best to give him what he needs now, but not make a huge investment for the future yet. Luke might still move to a conventional BTE (behind the ear) hearing aid later on when his ears stop draining. If we stick with bone conduction, we can always purchase a BAHA a little later. The main difference for us is the band. I finally got a good look at the BAHA yesterday and think I could make a similar band for the aid we are buying without too much difficulty.

Busy week!

All the little bees have a busy week this week. Sam and Gus have the fun run benefit for their school tomorrow morning. Then tomorrow afternoon they have their first soccer practice for the season. Rob is coaching them again and they are all very excited! Then Friday S&G have a field trip to the Blue Bell factory. Their slogan is "Blue Bell, the best ice cream in the country" and I have to agree - it is my favorite! I wish I could go, but that didn't work out - too many parents wanted to help out - you get a scoop of free ice cream!

Luke had his yearly genetics visit today. Nothing new really. She doesn't like that he has fallen off the charts so far for weight, but we are doing what we can at the moment. He has a booth hearing test tomorrow morning. I will update you all with the results from that, but I don't expect any major upsets. Thursday Luke is scheduled for his third dilation and possibly an adnoidectomy. I hope it is just routine and the stints come out, but I am not holding my breathe (about the stints that is). Friday, I think Luke and I will be taking it easy at home, I hope. He has been coughing tons at night, so Rob and I aren't sleeping well. I can't wait for that to pass.

That's all for now. I will try to post again soon!

Some cool new things Luke is doing

I just wanted to share a few things that Luke has been doing lately that show he is progressing in his development. He has been loving peek-a-boo. He thinks it is the best game - for quite a while he seemed to just not get it, but now he does. Luke loves to pull Rob's glasses down. Lately though when Rob gets a sad look after Luke pulls on them, Luke pushes them back up. I don't know if he gets that Rob is sad, but it does show a consistent cue and response pattern. Luke generally gets excited to see us, but now if we have to walk away without picking him up, he starts to cry. He doesn't want us to leave him. And my favorite is that Luke holds his arms up to be picked up. He used to show that he was ready by tensing up, kind of bracing himself for being picked up. But now he is showing us that he wants us to hold him. This is a long way from the touch-me-not baby we had for a while. It is also the closest thing we get to a hug.

Ps. Thanks Auntie Lanie, Uncle David, Phil and Tone for the cool Australian coin set you sent for Luke's birthday! I really think he liked looking at the bright, shiny coins. Sam and Gus were really impressed too.

Video of Luke eating cake

I forgot to add this before, but we took some of video of Luke eating cake. Lara is talking to Oona in the background and you can also hear Sam telling Lara about Luke turning 1 at 11:11. Does anyone else have a thumb twiddler?

Today is Luke's 1st birthday

Happy Birthday Luke!!!!

Prince for a day

The Prince and the bee

Luke's little bee cake

Luke's birthday spread - too bad he doesn't really eat this kind of food yet

Silly Gus and Sam enjoying the party

Pretty Oona

Luke has been blowing lots of bubbles since he got his stints

Everything in Luke's mouth comes out his nose, so these are really spit bubbles

I think this may be the biggest one yet!

Time for cake

It's my birthday!

Luke in his birthday bib. I made bibs for Gus & Sam's first birthday too.

The whole gang

Happy birthday song

Sam and Gus helped blow out the candle

Luke's first time to eat cake

He had fun rubbing it in his hair

By the time we got to presents Luke had had enough.
It wasn't his new dragon making him cry - he likes that
Thanks Lara, Daniel and Oona!

Luke with his wombat -
He needs to know that he is an Aussie too - Thanks Michelle!

What a cool Baby Einstein book - Thanks Nonna!

Worn out

Luke wore his new Mr. Happy shirt.
It was also his first time in blue jeans, but he already had them off at this point.

The party must go on - Luke didn't even finish opening his presents!

Central line

I just realized I didn't even mention the fact that Luke's central line did not come out yesterday as we had hoped. Not only that, but we are now having to plan on keeping it for several more months. The last word is that Luke will be keeping the line until Dr. Hill does Luke's last CA repair. Luke has always been hard to get an IV in, and rather than getting easier, he seems to be getting harder. If they take the line out then they would have to put in a new one every month when he has his dilation. Our biggest problem with the line (other than having an extra dangly bit attached to our baby which we have to be especially careful of plus the daily extra maintenance ie. torture for Luke) is that Luke's skin is really raw and abraded where the bandage has been (for the past 5 long months). To help with that they gave us a new dressing to apply which is then ace wrapped around his body rather than taped. So our newest anxiety will be keeping his line site dry without a waterproof covering as it sits 2 inches below and to the left of his trach. I already felt like it was a miracle we made it this long with no problems. I think I need to sew some sort of waterproof cover that can velcro or tie on. If anyone has any ideas I would love to hear them!