Updates on Nolan

Nolan spent some time playing in the first snow of his life (the minor flurries we have had here in the past two years do not count!). His first trip out in the morning went well for about two minutes then he fell twice and had a melt down. Turned out all he needed was a nap (about three hours of nap) and after that he was good to go. He loved watching Neaka and Sambuka playing in the snow most of all though he thought stomping in it was pretty fun too. It was nice for all of us to get to see the snow again after so many years of false alarms. We hope to show him the joys of sledding in the future! We got a few pictures we will eventually post but we are once again without internet so it may be a while.

P.S. At his last weight check Nolan was twenty-five lbs (they now weigh him with clothes on).

ok, finally got more photos in the gallery. Enjoy!

Wow, has it really been over two months since the last post?! Well, time flies when your chasing a two year old.

We are well here. Nolan is now an old pro at the whole walking thing. He still trips regularly but can practically run and is showing us some fresh dance moves- look out Beyonce!

He has finished his physical therapy though she is calling once a month to make sure things are still progressing. We miss seeing Randah not to mention the motivation she provided for cleaning the house… We are going to start speech therapy soon. On the last test Nolan was still on the low end of normal which just qualified him for speech therapy. We decided to go ahead and sign him up; we still don’t feel worried about him talking but figure it certainly couldn’t hurt. He definitely knows-and uses-the word “NO!” Hopefully we will make another friend in his speech therapist as we did with Randah.

We had a big holiday. We were here for Christmas day then drove to Poplar to have another Christmas with our mountain family. With all the parties, presents, cousins and traveling we were (um, still are a bit) worn out. Nolan was a champ and held up quite well for all of it. We gave ourselves a camcorder as a gift and hope to get some footage on the blog. Right now we are having trouble getting our computer to read the disks so it may be a while before you (sorry Squarepants!) get to see Nolan in all his glory.

Happy 2009 to all. We feel it is going to be a good year and look forward to all the adventures ahead. Just in case I let time zip by again I will go ahead and post a celebration: On February 11th Nolan will have been home for two years, good work little man!

We finally have a toddlin’ toddler. Nolan was proclaimed a walker by his PT yesterday so he has graduated to seeing her only once a month now (wait, is that a reward or punishment?!). He has been walking for about two weeks now and is starting to bring his hands down from “high guard” to by his sides; It looks a bit funny because he doesn’t have the natural swing to his arms yet, they stay right next to his body. He already does really well outside on uneven ground and can step over roots and such with relative ease. I believe the next project is steps, thankfully we don’t have any here and will have to make a special trip to Mimi and Dindin’s to practice.

We will be watching his speech development over the next month and decide if he needs speech therapy when his PT and case manager return in November. According to them often kids can concentrate on only one new skill at a time so now that he can walk he may forge ahead on speaking. If not, we have long time family friend who is a speech therapist who I think Nolan will love. We are still not worried about him talking and believe it will come in Nolan time but don’t mind having him go to therapy either. Really, of all the things we have had to worry about this seems minor.

I will put up some photos from our recent trip to the mountains. Nolan went to the Carl Sandburg park where he met, fed and ate with some goats (mmmm, hay!) We all had a good time seeing the family and hope to see them again soon.

Nolan has had several infections which were thought to be UTIs though the last sample they took was “contaminated” so it wasn’t clear what was going on. Because UTIs are so rare in boys his Pediatrician wanted to have some tests done to see if he was having reflux. There are cases where the urine refluxes all the way back up to the kidneys and can damage them which can require surgery.

The first test was a simple ultrasound which went fairly smoothly. The next test was a series of x-rays plus a test where they catheterized him and filled his bladder to see the path of the urine. This test was traumatic for everyone. Two nurses tried to cath him which had him wailing and us ready to walk out. They were able to call his Urologist (Dr Bukowski) down who talked to us about why he thought the test was necessary and then was able to put the catheter in in a matter of seconds. After that things were better and the test was over fairly quickly.

It looks like he is having a very small amount of reflux which Dr Bukowski said is nothing to be concerned about. He also said there are no strictures from the surgery and he didn’t see any signs of a fistula which is a common occurrence after surgery to fix severe cases of hypospadias. This was a nice surprise as we have been expecting Nolan to need surgery this fall ever since his last surgery. The Dr said a fistula can occur at any point so it doesn’t mean Nolan is fully off the hook but it makes this fall and winter a much more pleasant time.

His pediatrician seemed more concerned with the small reflux because of Nolan’s UTI history so we had another conversation with Dr Bukowski. He had another look at Nolan’s x-rays and was clearly unconcerned about the amount of reflux, he said it was within normal range. He also said that the tests we had used to diagnose Nolan’s UTIs were not reliable, that maybe one in 10,000 were uncontaminated so that, yes, he had some kind of infection but the source was unknown. There are two ways to test for a UTI, we have been “baging” him where you put a bag over all the necessary parts and capture the urine to test it. The other choice is to use a catheter which is apparently the only way to get a clean sample but is hard to do, painful and traumatic for all of us. So. Next time…? let us hope there is no next time.

In any case we are looking at a fall with no known surgery, cooling temperatures and maybe if we are lucky a bit of snow. Sounds great!

Nolan is officially two…um, well, 21 month AND 24 months! Two years out of the womb!

We had a party on Saturday. Many friends came by to help celebrate, blow bubbles, eat cake, open gifts and play music. It was a fun day, we are still recovering. Nolan was so worn out he slept till 8 am (!!!) and probably would have kept going but we didn’t want to get too far off schedule. There are pictures of the party in the “Adventures in Toddlerville” album.

This morning, his actual birthday, we went to Breadman’s with Mawmaw and Pawpaw. He is in the livingroom playing with all his new toys, making music, and reading books. He thinks the weekend was pretty awesome and that we should do it again soon.

Thanks to everyone who was able to come to the party, to all who sent birthday wishes and to all who are reading this now. We are all so blessed to have you as part of our community.

There are some photos from Nolan’s two (yes, two) trips to the beach on the site now.

These were momentous trips because while he was in the hospital we would imagine a day when we could go to Bald Head as a family and that being there would mean we had finally made it through.

We had the opportunity to go with David, Leon, Coleman and Logan for a few days which was great fun especially for Nolan who loves playing with his cousins. Then Kara and Nolan were able to return for a whole week (Ronan had to stay home to teach) with Mimi, Dindin, Aunt Margaret, Aunt Noni, Maria and Deb. It was nice to be there so long and to get to visit with the folks from Alabama. We also had a nice surprise visit from some friends who are living in Oregon. They brought their two sons who were great playmates/objects of interest for Nolan.

One of Nolan’s favorite things to do was to ride around in the golf carts, he thinks it is much better than a regular old car. He also liked playing in the tide pools, scooping sand and trying to feed the seagulls; he didn’t like the waves except for in very brave moments.

All in all both trips were welcome experiences and we can’t wait to return.

Weight: 20 lbs 1.5oz! He is getting heavy to carry around for long.

Wait: We have pictures and tales to add to the site (beach trips for instance) but you will have to wait for now. Suffice it to say things are continuing to go well.

Again, many thanks to all of you out there. Stay cool and drink plenty of water!

Nolan is all better from his UTI and seizure experience. He is back to his normal self just doing his toddler thing.

He had a fun weekend. His friend Eva (our neighbor who will be five in Oct.) came over to visit on Saturday morning and then we went to her house (at Nolan’s insistence) that afternoon. Eva has a younger brother, Joseph, who will be one in Sept. so Nolan got to “play” with him too. Then his cousins Coleman and Logan came over to spend the night which was icing on the cake! Nolan laughed more than I have ever seen, I think he wore himself out but couldn’t stop laughing.

On Sunday we went to church to hear Dindin give the sermon and to introduce Nolan to the people of the Church of Reconciliation since they were so helpful to all of us. Nolan lasted long enough to be introduced and then had to be taken outside by Ronan. Thankfully they have an awesome playground for the kids. Later that day we went to Julian, NC for a lunch/meeting with some potter friends. Nolan got to meet some new dogs and cats as well as meet some of the largest horses I have ever seen. He got to pet their noses and see them run along the fence. We walked all over the farm, played in a sand box and saw lots of cool art.

As you know Nolan has been reluctant to walk on his own, still is. However, on Sunday he was walking towards a door with me holding onto his shirt as usual. He was so intent on the door that I let go and he didn’t notice and walked all the rest of the way no problem. I’d say he went about 7 to 10 steps. So we know he can do it now, we just have to keep pushing him. I think it won’t be long at all now as I have seen his confidence grow rapidly in the last couple of weeks.

We are working with Nolan on being gentle or at least not hitting others, so far he is totally ignoring us. Our poor dogs have been the target of random slaps (the cats are too wary) not to mention me, Ronan, Eva, Joseph, Mom, Dad, Mimi, Maymay, Deb… you get the picture. Actually, there was a breakthrough moment just last night as I was putting him to bed. He looked up at me, I smiled and he raised his hand to whack my nose, I said “no, don’t” and he lowered his hand and put it behind his head. So there is hope but most of the time it seems like he hasn’t heard us. Typical toddler stuff!

He now weighs 19lb 7oz and got a good report from his endocrinologist recently so we are flying high for the moment. More hoorays!

Who would have thought we would celebrate a UTI? It turns out Nolan did indeed have a UTI though the antibiotics he was on were not the right kind so we have started a new round. So far he hasn’t had another fever and I believe he is starting to feel better though it is a bit hard to tell right now because he is due for a nap but won’t go down.

We are happy to have something known that can be solved. Hooray!