Articles I Have Written
- The Best Books for Kids with Hearing Loss
- Sleep Studies for Kids
- Adjusting to Hearing Aids
- Free Resources for Deaf and Hard of Hearing Children
- First Steps When Baby Can't Hear
- When Baby "Refers" on the Newborn Hearing Test
- Water Sports with Hearing Aids
- What is the Newborn Hearing Screen?
- The Best Hearing Aid Accessories for Kids
- Choosing Eyeglasses for Kids
- Great Hearing Loss Simulations
Friday, July 31, 2009
Wednesday, July 29, 2009
Being completely useless in all spheres which include Martha Stewart or a sewing machine (I would honestly just hurt myself), I found instructions for making a flannel board which involved only flannel, a bulletin board, and a butter knife. Considering that butter knives are fairly dull, I calculated my risk of self-injury as almost nil. I ran to Wal-Mart (hey, they have cheap diapers and it was an excuse to get out of the house) and found a nice lady in their sewing department who could point me to flannel and felt.
All you have to do is get a sheet of flannel slightly larger than the rim of the bulletin board. Then you use the butter knife to gently prod the excess under the frame. The only slightly difficult part of this whole process is using scissors to closely trim the excess, then shoving that extra material under the rim.
I was going to take pictures of the process, but the camera battery died. So all you get is the before and after. The "after" isn't really set up properly in the picture below- I am going to arrange the days of the week in a more orderly fashion. I made several felt pieces that currently have wet puffy-paint on them, so they are all drying in a helter-skelter pattern on the board. Hopefully they'll be dry by tomorrow.
The felt shapes cling quite nicely to the flannel. I made a little felt star shape that we can move to the appropriate day of the week. I also made some holiday shapes, but I will need to make more of these.
Actually, now I'm hyped up on flannel boards. I found a website where the mother (who is far more creative than I'll ever be) made tiny ones for use in the car. With little cut-out story figures and scenes. This was really very easy to create, and there are felt figures you can purchase online if you aren't feeling crafty with the puffy paint.
Abstract concepts are more difficult for kids with hearing loss to understand, so a calendar helps reinforce concepts like today/yesterday/tomorrow and sequencing of events. I challenge all of you to come up with your own calendar!
We arrived about 5 minutes late, right in the middle of the music program. The school has two dedicated music teachers who sing songs with the kids, and bring out a guitar. The songs are great, with many repetitive stanzas that the kids find easy to repeat. We also did a song with various tapping rhythms, which most of the kids loved (Nolan was still in Velcro mode and wasn't participating much at that point).
We took the kids outside to play and it was so nice to see all the kids playing and enjoying themselves. Matt fit right into the class and was a good language model for the kids. After sliding and blowing bubbles, we went back into the class and made pudding, then had some free play and a goodbye song. I really can't wait to go back again, with the small class size and the large amount of teachers (there were the two music teachers, the main class teacher, another TOD, and a speech language pathologist in the class)!
While we can't go on a regular basis, I do try to take him up for the occasional program. Despite the long drive (four hours in the car round-trip), it is always worth it. This time, I took Julia's advice and stopped by the Buffalo Zoo after class. The zoo is only 3 miles from BHSC, and I should have started the audiologist/zoo thing earlier. The boys had a blast!
Thursday, July 23, 2009
We have had a lonnnnggggg week. Nolan hasn't been napping well. Or sleeping well at night. It is raining incessantly, and the long list of laboratory tests was looming large in my mind. So I decided to get it over with and started the testing marathon yesterday.
I stopped by a local satellite lab to see about the testing requirements. The GI doc didn't say if the blood work had to be after a fast or not. I also wasn't sure about the whole stool sample collection deal. The thing stressing me out the most was the urinalysis, because Nolan is unable to voluntarily void. Getting a "clean catch" is quite the ordeal.
They sent me to the main lab at the hospital to pick up the stool sample supplies. There was a long list of forbidden food for the occult blood test card. For three days prior to the test, Nolan wasn't supposed to have eaten any bananas, grapes, melon, etc. Not a problem, since he isn't eating most things. I took the bags of collection materials home and managed to get sufficient material by the end of the day.
Nolan woke up at 2:30am today. And didn't go back to sleep until 6:00am. My patience is shot. And I have to get a urine sample. I gave him some water (which was allowed prior to the blood work) and waited. And waited. And waited. NOTHING. I gave up and we went to the lab to get the blood drawn. They drew about 7 or 8 tubes, and that was with consolidating the tests as much as possible. I certainly hope we get some answers with all of this testing!
Then we tried to get some urine again. I had two boys in the laboratory bathroom, two boxes of apple juice, and waterproof pads spread on the floor. I begged, I pleaded. No dice- it just wasn't going to happen. After an hour and a half in the laboratory bathroom, we gave up and went home. I did finally get a sample using a urine collection bag, but these are easily contaminated and are not considered a "clean catch." Whatever- hopefully nothing will grow and we'll be done with the whole mess. Because Nolan is a PUV boy, he may be quite delayed with obtaining toilet training milestones. I'm not worried about it, but goodness gracious it can make urine samples difficult! At least we didn't have to resort to a catheter.
Now we just have the excruciatingly long wait for lab results. We should get them at the follow up appointment at the end of August. I'm not a terribly patient person, so waiting is a challenge for me. Especially when my kid's health is on the line.
Tuesday, July 21, 2009
Monday, July 20, 2009
I wonder if the GI doctor has a similar site. "Help the food find it's way through the intestines!" I'm not sure if these activity pages are weird or hilarious. I'm voting for funny.
Tuesday, July 14, 2009
The ENT office called me this morning to give me Nolan's Upper GI test results. From the radiologist's report, it is completely normal. This means that his eating issues stem primarily from the borderline gastroparesis, and not from some unseen anatomical anomaly. I'm not sure if this is a "good" thing or not- an anatomical anomaly might have been easier to "fix," but at least there isn't anything else wrong!
In the meantime, Nolan is eating more again. By "more," I do not mean "eating like a typical 2 year old." An example of today's ingested material is:
2 tablespoons of oatmeal
2 bags of Yogos
3 french fries
The Yogos might take some explaining- we found a food that Nolan will eat, so we're giving him some Yogos to keep him chewing and swallowing. Some kids begin to prefer an exclusively liquid diet and don't want to chew anymore, so we're giving him these as "chewing practice" and not for any nutritional value.
He has spit up twice this week (like an infant- white milk) and has had some good eating days and poor eating days. We see the gastroenterologist on Monday and will have a better idea of how to proceed. Right now we're officially "dealing" with resolved PUV's, hearing loss, gastroparesis, and head lag. This new doctor is an MD/PhD and specializes in complex medical cases, and our ENT is hoping she'll be able to come up with a comprehensive diagnosis. Of course, it is always possible that Nolan has a bunch of unrelated, rare problems. But it is more likely that everything stems from a common cause. All I really care about is getting my kid to eat again, and to eat enough to gain weight. A 22 pound two year old is pretty skinny, and we can't find pants to fit him. He's in a size 9 month for the waist, and needs a size 18 month for the length.
We may be investing in suspenders in the near future.
Thursday, July 9, 2009
Since Nolan isn't a big fan of solid food, he is quite hungry when he wakes up in the morning. He usually cries until he gets his "nilt" (or milk, for the uninitiated). I knew this morning wouldn't be fun, but I also figured that his extreme desire for milk would cause him to drink the barium without incident.
We arrived at Buffalo Children's by 7:45- early for the procedure, but since we were the first ones on the list, I figured we might get in a tad early. Which was a good thing, since Nolan was screaming "NILT!" to anyone within earshot.
The technician took us back for the first X-ray (just a clean shot of his tummy, no barium involved yet) and I had to wait outside the door while Nolan freaked out and had his "picture taken." Then she gave him back to me, and we went to wait for the radiologist to show up so we could do the barium part of the procedure.
The technician told me that if he refused to drink enough barium, then they would have to insert an NG tube to get all the images they needed. I had all my fingers crossed that Nolan would drink that barium like crazy once they took him back for the scan.
The actual procedure takes about 30 minutes, and parents aren't allowed anywhere near the X-ray room during the process. The radiology tech came to take a history prior to the scan, and was shocked to see his weight. She said, "does he have a g-tube?" Yikes! No, he doesn't, but that set me on edge. Then the radiologist came in, saw the gastroparesis diagnosis, the failure to thrive, and the refusal to eat solid food. He said, "does he have a mickey?" The nurse said, "No, no g-tube." The radiologist shook his head and asked me why it had taken ten months to get a failure-to-thrive child in for an upper GI. I didn't want to go into the whole, "the pediatrician thought he would grow out of it" thing, so I told him that we had a very dedicated ENT who had pushed the work-up through.
They took Nolan and did the procedure, and then brought him back to me with one hearing aid out and covered in barium. Note to parents of hearing aid wearers who are getting an upper GI: take the aids out or protect them with Ear Gear! Luckily the aid is fine, though I think there might still be some barium residue in Nolan's ear. Turns out that Nolan is not enamoured with barium. They did have to use a naso-gastric tube to finish the scan.
We had to wait another half hour, then take another X-ray to ensure that the barium was moving out of the little guy's system. The tech had told us we would get the results the same day as the procedure, but after the procedure was run she told us that we would have to wait for the report to get written and then sent to our ENT. This means the results won't be available until Monday at the earliest, since the ENT will have to review them before I get the report over the phone.
We were finally free to go, and Nolan was happy to get some diluted fruit juice. After barium, I'm pretty sure that apple juice tastes pretty good!
Wednesday, July 8, 2009
Tuesday, July 7, 2009
Wednesday, July 1, 2009
- Head lag (that's always been there)
- Problems eating
- Problems gaining weight
- Random "fevers" (99-100 degrees)
- Elevated AST and ALP (liver enzymes)
- Clutching his neck while eating or drinking
- Posterior urethral valves (that have been taken care of, thank God)
Our perplexed ENT did note there was head lag, and observed him pull at his throat while drinking.
Nolan pulling at his neck while drinking
I told her I didn't know what to make of all of this. That he wasn't eating, and if it was behavioral then we needed some help. Because he's getting worse, and not better with the current course of action. Then she asked what made me think it was behavioral. I told her that the scintiscan was negative. Her response was:
Nothing good starts out with that qualifier. It turns out the scintiscan was negative for reflux. Yippee! It was also positive for delayed gastric emptying (DGE for short, or gastroparesis). It is borderline, because there are currently two standards used for DGE. One standard says that if only 25% of the stomach contents are emptied after one hour, then it is DGE. The other says that if only 30% of the stomach contents are emptied after one hour, then it is DGE. Nolan was at 27%, smack in the middle of those categories. By one, he has gastroparesis. By the other, he is borderline. She did diagnose him with gastroparesis, as he has symptoms consistent with the disorder and the test results indicate an issue with gastric emptying.
The next decision was whether we should be sent to neurology or to gastroenterology first. Since the head lag has always been there, we were lobbying for the gastro consult. The not-eating thing has our stress levels sky high.
She checked his weight (22 pounds, 12 ounces at 22 months of age) and agreed that we should see the GI doc. She also ordered a repeat of the liver function tests to see if those had normalized and an upper GI to be completed before we see the GI specialist. We had the liver panel redrawn today, so hopefully those numbers will come out as normal. It would be nice to wipe those off the "worry list."
Off we go to the GI specialist to find out what is going on with the little guy, and to get him eating again.