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!

A long road

Luke is doing fine, but his dilation today didn't turn out as well as we had hoped. Dr. Hill had to put stints in Luke's nose that will stay in for the next 4 to 8 weeks. He said the inner part of Luke's nose is doing well, but the outer edges are proving hard to open up. Part of the problem is that his adenoids are in the way and need to be removed. He doesn't want to do that while Luke's atresia repair is raw though, because he would then risk the two areas scaring together. It ends up being a bit of a chicken and egg situation because Dr. Hill can't dilate as much as he would like with the adenoids in place, but he can't remove the adenoids until the choanae has healed more. Dr. Hill also mentioned that part of the difficulty is that Luke's skull base is abnormally V shaped. This shouldn't affect him in the long run, but in the short term it makes it difficult to get his nose open as much as it should be. At this point we have to play it by ear - month by month - as far as how long it will be until Luke can get his trach removed. Every bit of growth helps, so we are hoping this will only push decannualtion back by a few months. Dr. Hill did help settle my regrets today. Mom came with me to the hospital. (Which she does every time - she has been so wonderfully supportive and helpful through all this there is no way I will ever be able to thank her enough.) She asked Dr. Hill if he had done the choanal atresia repair when he first attempted it (when Luke was 6 days old) if that would have meant Luke wouldn't have had the trach. Frankly this has been our assumption (and as I said our regret). Dr. Hill said that Luke's nasal airway is so small and difficult to repair that there is no way Luke would have gotten away without getting the trach. His nasal airway would have been so small that he would have had to stay ventilated which would have likely caused damage to his lower airway. And Luke would have ended up with the trach a couple of weeks after the initial repair anyway. I think it makes me feel better to know that the trach was inevitable because then I don't have to think that there was a better decision I should have made to prevent it.

Thanks Tosha!

Luke's OT at The Bell Center, Tosha, took this wonderful photo of Luke at their Christmas party this year. It is one of my very favorites! Isn't she a terrific photographer... Although it can't hurt to have such a cute subject :)

Urology surgery update

Week before last, Luke has his first urology surgery. It was an out-patient procedure and he did very well. Dr. Joseph did a laparoscopy to look at Luke's testicles and see what needs to be done to bring them down. Testing had only shown one testicle, so we were quite surprised when Dr. Joseph found two. And better news still was that both were a good size and he expects them to be productive. So it is possible that Luke will produce testosterone as he should at puberty. We will have to wait and see, but there is some hope now, so that is great! Luke will have at least one more urology surgery, which is scheduled for August, and possibly one more 6 months after that, but then he should be released from urology. The worst part right now is that Luke can't straddle anything for a month, so no bouncing in the jumper or playing in the excersaucer. Both of those are great for helping him gain more stamina being upright while still giving him support, and providing the all important distraction while doing so.