Updates on Nolan

We went to the Urologist today. They checked on Nolan’s growth and general health and approved him for surgery. They first offered us the date March 3rd: too soon, too soon we said! Actually, the main reason we wanted a later date was our trip to Alabama: Ronan needs to be able to concentrate on making work and with the recovery period being around ten days it was just too close to our departure date. (Though I wouldn’t know I can’t imagine it is any fun to travel with a catheterized toddler).

So March 31st is the official date, we won’t know the time until the Friday before. The surgery is only around 2.5 hours and as long as things go well he will come home that evening. The surgeon is hoping to accomplish everything with one surgery though the severity of his hypospadia might mean it will take two surgeries; The Dr. seemed confident he could get everything in one go but said he “didn’t promise anything”.

It is good to have a date set so there is an end in sight. However, I don’t look forward to it, except the part where they come find us in the waiting room and say everything went well and we get to take him home. Just being in the hospital triggers memories/emotions for me so I will be a bit of a mess on the 31st. Probably on the 30th too… Knowing you are out there thinking of him will once again be a source of comfort for all of us.

I forgot to say, Nolan has finally had the tip of a tooth pop through those poor gums! He has been drooling/teething for 8 months! Hopefully the rest of the teeth will get the idea and follow soon and give dear Nolan a break from the pain.

On Feb 11th Nolan has been home with us for one year! He continues to blow off all statistics by not returning to the hospital, not going back on oxygen, eating well and acting like he never had a massive brain bleed. We tell him how amazing he is many times a day.

He is completely off the g-tube now. His liquid intake has greatly increased, especially just in the last week, he drinks almost too fast sometimes. There was a month where he lost weight and we started hearing rumors of returning to the g-tube for calories. I was determined not to go back to that and started bringing Ben & Jerry’s vanilla ice cream home to make shakes. The only ice cream I could find with more calories is Hagen Das but it wasn’t significant enough to override my loyalty to B&J. Almost needless to say, the shakes are working and he is up to 18 Lbs 4.5oz as of the 12th. He is drinking the shakes from this cool cup his pt brought him, it has a straw that keeps the liquid up near the tip so he doesn’t have to work so hard for a drink. The only bad thing about all this is the temptation a pint of Ben & Jerry’s is for me; I am doing better about it now but the first week I have to admit to helping finish one off. Mmmm.

We don’t know when the g-tube will get removed. We have certainly passed the “time test” that is required but they won’t take it out during cold season. They may want to leave it in until his (final?!) surgery is over, not sure. We will know more about when that will be after his urology appointment on Feb 25th.

I finally got a few new photos up for you. Now that I know how I will be able to update more often. The video isn’t up yet, Maria will have to do that simply because of the size of the file. Enjoy the new photos. He is changing so much everyday that most of these new photos look old to me now…

Take care everyone.

So, you would think with things having settled down now that we would be able to post more often; Well, I guess we have to think again. So, we hope everyone had happy and healthy holidays and that 2008 has been great so far. We do have pictures to post but I am not sure we can do that without help from Maria who is currently driving across the country with Deb. Later in life Nolan will be dreadfully ashamed by his parents technological ignorance.

We had a nice holiday. Before Christmas Ronan’s family came down for a few days. Nolan had a blast playing with his Mawmaw, Pawpaw, Uncle Doolittle and Aunt Fab. He got some nice new outfits, some cool books and fun toys from his western Carolina family. Then on Christmas day we went to my parents house where he once again reveled in being the center of attention. He got more fun gifts including a crocodile xylophone, a “Pop goes the Monkey” and a stocking made by Maria. Oh, and his Aunt Fab (Amy) made a great video that we will try to get up on the website.
Nolan has finally taken flight and is crawling all over our (dirty) floors. He pulls up and cruises around our new couch and generally wants to be on the move all the time. I don’t have any idea how house wives ever did everything they needed to let alone keep the floors clean. In any case, Nolan love to crawl and giggles the whole time; he has also started playing chase, that is we chase him, he crawls as fast as he can, he turns to see if we are coming and when he sees we are he squeals and takes off again. It is a lot of fun for all of us. Ronan and I need to readjust our expectations/habits (once again) because you can look away for a second and he will be across the floor, surprise!

We have taken him off the g-tube completely now. It may be only temporary depending on how well he picks up on drinking. He has definitely started taking more juice though his bottle intake has stayed about the same. We just have to keep an eye on him to see if he becomes dehydrated. He has lost some weight because his activity level has risen so much but our doctor isn’t worried about it yet so for now we remain free of the tube.

Well, I have to sign off and get some things done. Happy New Year everyone! Kara, Ronan and Nolan

so last week our pt gave us the go ahead to take Nolan off the g-tube calorically (hmm, maybe not a real word…). What that means is he gets all his calories by mouth while still getting some fluids (pedialyte) by g-tube until he increases his liquid intake. Once again this is a fine balance since we don’t want him dehhydrated but we need him to be thirsty enough to want to drink…

I was worried about his weight gain because it hadn’t been that great for a couple of weeks and now he would be less 160 (guaranteed) calories. He has become pickier with food in the last few weeks (someone taught him “No” and it wasn’t me!); He didn’t eat all that well last week, there were several days he didn’t meet his calorie goal and his fluid intake suffered a bit as we adjusted to the new schedule. So, as I said as we went to his weekly weigh in I  was just hoping he hadn’t lost weight so we could stay off the g-tube.

Tell us already you say? In typical Nolan fashion he gained 6.5oz which is close to the most he has ever gained in a week. I have no idea how that happened but I am gonna take it. I am also going to try and relax about him refusing food or not meeting his calorie goals and figure he will eat if he is hungry. Let me emphasize “Try”.

I think that may be all the news for now. He remains the most beautiful and amazing being I have ever known.

take care all. Kara, Ronan and Nolan

Nolan continues to do well. We always hear “he looks great” when we visit one of his many doctors. His growth is catching up but still not what his endocrinologist is wanting so we may be looking at growth hormone therapy in the future. The  doc also mentioned the probability of an MRI to look at his pituitary (before he turns three), he said it was his hunch he would need one but then said “I could be wrong”, so once again it is up to Nolan. We are also looking at a surgery in March to fix his hypospadia. He has the most severe form of it which sometimes takes multiple surgeries though no one has said this to us (I read it on the internet). So, in the spring we may be sending out a “good vibes” call once again.

Nolan has begun eating some solid foods. He chowed down on some baked chicken I was kind enough to share with him and he seems to really like cheddar cheese. Sometimes he will pick things up himself, more often he wants me to put it in his mouth. So I get torn between him getting the calories (gaining weight and being able to get off the G-tube) and knowing he needs to learn to finger feed; So far I have mostly given in to feeding him.

He is learning to pull up and to stand while holding onto something. He is very good at the standing part and does well with holding on. We are trying to teach him what happens when you let go without him cracking his head open… Randa, his physical therapist is working with him on the transition between sitting and standing which he seems to be picking up but still needs a lot of support.

In general he is a real firecracker and can hardly sit still now. I think all his energy will help him be motivated to figure out how to get from place to place and to build up the strength to do so on his own. He is generally good natured, always ready to laugh or at least smile. He takes a few minutes to warm up to visitors but once he feels comfortable he will put on a show!

Speaking of which for those of you who haven’t found out, if you go to his photos (the most recent ones, I forget the title of them) and click on the one where the photographer was shooting down on him and he is looking up, sitting in a chair, a video will play. Maria put together the video from various times she was over, it is not too long and has some great moments. I like watching it and I get to see him every day!

Ok everyone. Take care of yourselves and once again (and again, and again) thanks so much for all the support over the last year plus. I know all that love had a hand in his amazing recovery not to mention how much it helped us .

Today is a big celebration day! At one year, Nolan is doing great. He’s 14 lb, 11 oz now… That may not seem like much for a one year old, but it’s THIRTEEN TIMES his birthweight. How many other one year olds do you know who have achieved a feat that impressive? Not many, I bet (unless you work in the NICU, in which case you don’t count for this contest!).

Speaking of the NICU, Nolan has gone back to visit several times and he wants to send a big shout out to all the hardworking folks there who didn’t give up on him even when times were really rough. A year ago, Nolan’s arm was so tiny that Ronan’s wedding ring could go around it all the way up at the armpit… loosely. Hard to imagine, huh? Those amazing folks at the hospital did their amazing thing and look at amazing Nolan now.

Nolan is doing all kinds of new stuff. He’s sitting up and balancing himself there. He’s talking — last week it was about bababababababa and this week it’s about dadadadadadadada. He’s just figured out that he can shriek, and he does that randomly, sometimes for fun and sometimes because he’s mad. He’s eating “solid” foods and smiling lots and snuggling up for love. He’s working hard at his physical therapy and learning new things all the time. He’s a pretty amazing and great and fun kid.

So thanks for hanging in with us through this first year and all its ups and downs. It’s been a wild ride but we’re pretty pleased with the sailing at the moment. I’ve uploaded a bunch of pictures, just in time for the deadline, in true Ikenberry fashion. I took a few more Thursday and I’ll get those up later in the birthday, plus a special celebratory surprise, so check back. Have a big party for Nolan today so we’re celebrating around the world!

Howdy to all you faithful folks. Yet again we are sorry it has been so long since we updated this fabulous site. It seems super hard to get to the computer these days and even harder to be on it for any length of time.

Nolan is doing quite well. He is around 11 and 1/2 lbs now, still not on the regular growth curve charts but he has his own curve going, I guess he is not into percentiles! He is chowing down on lots of different fruits (all mashed of course) as well as sweet potatoes, rice cereal, avocado and yogurt; He will eat anything if there is yogurt in it. He has moments of sitting up with little support and we are showing him the basics of crawling though I find myself torn about him picking that up too quickly… He laughs a lot, he has a fabulous belly laugh that I will do anything to hear. And he is finally getting a decent covering of hair so that the doctors and nurses will stop coveting the beautiful veins on his head (they wanted to stick IVs in them).

We all went on our first big trip in June to a family reunion in the TN mountains. Ronan and I were a bit nervous about how well he would travel because of some not so great short trips we had taken but Nolan held up like a champ. He had a great time once we met up with the family, all the attention he could want. It was a great time for all of us and a good lesson for Ronan and I, we have to constantly relearn what Nolan is capable of ( duh, he’s the Super Bean).

Last but not least is the Auction news. The final tally was a whopping 39,000.00! Talk about a great success… We thank everyone from the bottom of our hearts and down on our knees. Amazing and Beautiful.

If you are still checking in on the site we would love to read a little post from you, a quick little “still lookin’ in” is all you need to write, we just love knowing you all are out there. Take care all. love, Kara, Ronan and Nolan

sorry this end has been silent so long, lots to do and little time to do it with baby nolan growing up so fast. he will be 6 months in a few weeks and has just broken the 10# mark! he’s taking yogurt and pears from a little green spoon, talking and belly-lauhing a lot! kara is doing a lot of pt and ot and ronan is trying to get enough pots together to keep him (nolan) in diapers. the auction was a huge success and eternal thanks to all those involved. nolan is crying gotta go.

Nolan says Happy Mothers’ Day to all the moms and grandmoms and great-grandmoms and, heck, all the dads and aunts and uncles and cousins and friends and everyone else who is involved in raising children! But, today, most especially there is lots of love and appreciation for the moms out there…

Tomorrow Nolan will be 8 months old, and you can see from the picture that he weighed in at 9lb, 1.5oz last week at his weekly weigh-in. Nolan is working hard at getting big and strong. He’s also getting more and more interactive, using his hands and making lots of noises. Kara and Ronan have been doing lots of physical therapy with him and he’s really doing great with it. The physical therapy is stuff like having him do pushups on your chest and getting him to turn his head all the way to both sides and that sort of thing — mostly aimed at getting him to use both sides equally and gain strength and flexibility in general. A bit of catchup from spending so long in a bed when the other kids were out playing…

Apparently Nolan went to the Farmers’ Market yesterday and loved it. He was facing out in his carrier and Kara said he was kicking and talking and generally getting very excited. As he gets bigger and stronger, he’ll get to go out into open spaces with people even more. Undoubtedly followed by a bit of quiet time with the fuzzy friends, like this.

The auction on May 4th was a huge success! Immense thanks go out to all of those who participated by organizing (an unimaginably major commitment!), donating, volunteering or attending. I don’t know exactly how much was raised, but I do know they definitely surpassed their goal. I think more details may be posted on the auction website soon for those who would like to know more.