just walk on by
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.
nice surprise
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!
Birthday Boy!
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.
beach photos
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 & wait
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!
big weekend
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!
UTI hooray
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!
boo update
Nolan is better than he was but he is continuing to get fevers which we are treating aggressively with motrin. Aggressively means as soon as he reaches 100 we give him something to bring it down; normally I wouldn’t be so fast to treat it but my psyche can’t handle another seizure so soon.
He seems like his normal self, good appetite, active, silly, loving but a touch more fussy than usual. The Doctors have done some blood tests and a urine sample to rule things out. Some of the tests are still pending but some of the blood cultures came back negative for bacterial infection so we may be dealing with some unknown viral infection. He is on antibiotics for a possible UTI. At this point I am hoping that it is a UTI so we have something we can treat rather than a mysterious fever source.
Some fun news. We have begun signing with Nolan. The main ones we use are “thirsty” and “all done”. I started with those because they are the only ones I knew at the time. We are starting to expand now that Aunt Fab (who is now officially an OT!) gave me a book of signs for kids. Since Nolan is on the low end of his speech development it has been a relief for everyone for him to be able to communicate. He is pretty quick to pick up the signs which is fun to watch. He will pull out the “all done” sign when he doesn’t want his diaper changed or more recently at the doctors office when the nurse came in the room.
Will post more when we figure out what is going on.
hooray, boo, hooray, hope
Well, since the last post Nolan’s weight gain has been much better. We made it through the 18lb curse and have reached 19lb 2oz! I am not convinced it is due to the “hunger stimulant” he is on as his appetite still varies wildly. I think the plateau was due to his illnesses and surgery and he has finally gotten back on track from that. However, we are still giving him the meds for now, they don’t seem to be detrimental in any way and I could be wrong about their affect.
He still hasn’t found the confidence to walk on his own. He did take three quick steps between his Aunt Fab and I just this weekend so we know he can do it, he just has to believe in himself. We are trying to boost that confidence with exercises like getting him to take one or two steps between people or objects and by walking him all over creation and back while just holding onto his shirt. I am not too concerned with it really, I know he will get there one day and years from now it will only be a story about “he didn’t walk till he was two”. He had his developmental tests done recently and did very well aside from his gross motor skills issue. He came out right on target for his cognitive and way ahead on his fine motor skills. The doctors were happy and so were we.
Those are all “hooray”.
Today we had a “boo”. Nolan developed a fever that spiked high quickly last night. We gave him tylenol and it brought it down to a reasonable 101 for most of the night. Then early this morning it went shooting back up and before we could give him anything he went into a seizure. I was able to be calm for about 30 seconds of it and then freaked out because it seemed like he wasn’t able to breath. We called 911 and got the medics there pretty quick. By the time they came he was no longer seizing but was still chilling and very groggy. We ended up at the ER for awhile, they gave him Motrin which brought the fever back down quickly (it was 104 while we were there). They believe he had what I did about 10 days ago (a crud that is going around here) and that it was a febrile seizure and not anything to do with epilepsy. It has been a sleepy/fussy day but he is clearly feeling much better now, pretty much back to himself. We on the other hand are a bit wobbly.
the final “hooray” is that he is seemingly ok and up to his old tricks. There is a chance that he will be prone to these seizures. The stats are 30% of kids have them again and it may be that his complicated medical history makes him more likely to be in that 30%. And it may be that having these seizures means he will be more prone to epilepsy. But maybe not.
I, of course, really want his medical difficulties to be done, for him to have a hospital and mostly pain free childhood (ok, life is really what I want) because I feel like he has had his share. and we have too. We realize those are just wishes/hopes and that what will be will be and that we will do the best we can for him. But, oh do I hope.
May update
Well, our computer has died so we have been out of touch and once again I am thankful for this site since we have put so many of the photos on it and we may not be able to get back any of the ones on our computer. That is certainly an advantage film has over digital.
Nolan is well. A real handful and getting cuter every day. He will climb anything that sits still long enough and has progressed to walking while holding just one finger but still won’t try it on his own. I keep telling him he would be so much happier if he just went for it, though it would mean a whole new level of vigilance on our part. We are bracing ourselves for the immanent “purging” of our breakables Nolan is going to help us with; we have too much stuff but we love every piece of it so we still have all of it, so far…
Nolan is great at making animal sounds, this morning we were hooting like owls, barking like dogs and meowing like cats. He also sings with me when I sing to him (which is often) though he seems to know different words than I do, strange. He is a pro at the “Itsy Bitsy Spider” and also enjoys some Patty cakes. He talks up a storm, unfortunately I can’t understand most of what he is saying which is frustrating to both of us at times. Other times we just laugh and keep going.
We have started going to the park which has been great. He loves the slide but most of all is interested in the other children. He is a bit shy at first but once warmed up will hit them with his “check me out” scream which makes adults laugh but kind of stumps the kids (they always look to me for direction). When there aren’t many kids there we climb up the slides, swing, walk the low walls, play with the mulch (move it here, now move it there, now back again) and watch the very tame squirrels. It is nice just getting out of the house and finding a good place for him to use up some of his ample energy.
Nolan’s weight has not gone up since November (some gains some losses all equaling out to just under 18 pounds). I saw a Dr (not his regular Dr) on Tuesday who brought up his G-tube but I vetoed that idea quickly. We are back to trying an antihistamine that also acts as an appetite stimulant (in 50% of the children). I had briefly tried it before his surgery though I wasn’t convinced it worked. I took him off it while he was on all the post surgery drugs because he was out of his head from them and I was not about to add another drug onto the mix. I have heard two different ideas about the results of this antihistamine, his pt said it will work quickly and if we don’t see a difference in his appetite right away he is of the 50% it doesn’t work for, then on Tuesday the Dr led me to believe we just didn’t try giving it to him long enough, that it would take a while to kick in… so we are going to give it longer this time, I guess, unless we get another opinion from his regular Dr. I will fight returning to the g-tube tooth and nail because I believe it will just take away from his desire to eat orally, but if someone presents me with a convincing plan I will give it a try if it will help Nolan.
That’s the news for today. No more pictures until we get a computer of some sort back in service. Hope everyone is well.