Friday, July 31, 2009

Speech Sample

I finally found our "little camera" that has a video function. Here's a sample of Nolan's speech at 23 months of age. It is quite long, so some of the captioning might not match perfectly with the video. He is probably above average for expressive language, but you can see his tendency to simply repeat questions rather than process the information and give an answer. I've heard this is not uncommon for hard of hearing kids, so we'll see what happens with a few more months of growth and speech therapy!

Wednesday, July 29, 2009

Making a Flannel Board Calendar

I love the calendar that Ben's mom uses to chart their monthly events and milestones. I thought I'd take a shot at creating a calendar using flannel board technology, though I wasn't as ambitious and only created a week-long calendar.

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!

A Second Trip to the Moog School

The Moog school at Buffalo Hearing and Speech Center is absolutely wonderful. I absolutely wish we lived in Buffalo to take advantage of their parent-infant program more often! The parent-infant program takes place in their 2-3 year old preschool room, so the little kids get the benefit of seeing the "big kids" in action. Nolan would be eligible for their preschool program soon, and I am truly sad that we're too far away to consider going on a daily basis.

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!

After a three hour stint in the zoo (which is quite a bit larger than the Erie Zoo we are used to), I headed home with two comatose boys in the backseat. We certainly had a great day, and I hope to make it up to the school again soon!

Thursday, July 23, 2009

Testing, Testing

Totally unrelated to the post, but I think he's ridiculously cute.

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

GI Doctor Consultation

We had our consult with the GI doc in Buffalo yesterday. We learned a lot today (though no closer to knowing what’s going on with the little guy). She isn’t too concerned with his head lag, but is alarmed at his weight. She also said the method that Buffalo Children’s uses for it’s scintiscan is a waste of time. Since Nolan only ingested milk, the scintiscan is useless. They normally have a patient eat a compound with a known digestion time (usually oatmeal or scrambled eggs) to diagnose gastroparesis. So, we don’t really know if he has gastroparesis or not. It was basically a wasted test! She did note that his upper GI was normal, so whatever is going on is not caused by an obstruction, or a funny shaped esophagus.

She took down his history and she wants to scope him, because his weight is too low for his age (and he spits up and pulls food out of his mouth). He’ll have the endoscopy on August 12, with a pH probe placed for a 24 hour study for reflux. With his occasional spitting up, he’s got some symptoms that point to reflux but we haven’t seen it on any of the tests. Unfortunately, this means that he’ll have to stay overnight because they don’t want him pulling the probe out (it will be threaded through his nose into his lower esophagus). This will be done at Mercy hospital in Buffalo - she likes the probe equipment at Mercy better than the stuff they have at Children's.She gave us a case of “DuoCal,” which we are faithfully pouring into each cup of milk/juice that he drinks. Basically, we add the powder to his food or drink, and it adds 49 calories per packet. It’s a fat/carbohydrate powder with no electrolytes, no protein, or anything else that might irritate his system. It is tasteless and simply adds calories/fat. It also turns his apple juice white, which looks strange but apparently tastes just fine.

She did weigh him and he was 23 pounds, 0 ounces (so he’s gained a few ounces in the past few weeks, which is good)! He’s still below the curve, though. She ordered a bazillion stool/blood tests:complete metabolic panel, ESR (sedimentation rate), CBC with differential, amylase, lipase, urinary analysis with micro, celiac panel, GGT, T4, TSH, IgG/A/M/E and IgG with subclass 1, 2, 3, and 4. Then she ordered a stool evaluation for blood, elastase, alpha antitrypsin, pH, reducing substrate, and qualitative fat. We won't have any results until the end of August/beginning of September because she won't divulge test results over the phone. So we won't know the results until we have our follow-up a few weeks after the endoscopy.

I have to phone our local hospital to get the tests set up. Then we have a l.o.n.g. wait until we know what the results are.

Monday, July 20, 2009

Fun With Doctors

We saw the GI doc today, which will necessitate a long update. I'm not quite in the mood for that, so I thought I'd share something I found on our ENT's website. They have a "kids corner," so I thought I'd check it out. How many words can YOU make out of "otolaryngologist?" There is also a coloring sheet. And a maze, which I hope is not part of a novice ENT's instruction manual:

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

Upper GI Results

After all the "ear" stuff, you would think
Nolan would know where the otoscope goes. Apparently not!

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
24 ounces of whole milk
2 cups of diluted fruit juice

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

Upper GI

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

Random Update

Nolan managed to catch a nasty bug this past week, and has been running fevers of 102-103. Thank goodness, his fever broke this morning! I wasn't too concerned about the virus, but I didn't want to have to reschedule his upper GI. He's still a tad warm, but not burning up like earlier in the week, so we're going ahead as planned with the upper GI tomorrow. Luckily it is in the morning, because he can't have food or drink after midnight.

On a very interesting note, his appetite is better (and spitting up decreased) when he isn't drinking whole milk. We noticed this while away for the Independence Day weekend. I wonder if the high fat content in his milk is slowing down his digestion (kids with delayed gastric emptying are usually put on low-fat diets) or if he is a little allergic to milk? Definitely something to bring up with the gastroenterologist in two weeks.

Language-wise, Nolan is really starting to blossom with using spontaneous communication. Instead of merely answering a request to imitate, he is coming up to me to tell me (in tears) that "daddy baseball" (daddy left home to go play baseball) or, in an excited voice, "want popsicle!" There seems to be a language explosion around the age of two, and we're definitely experiencing that!

We do see a bit of a verbal processing issue, but I'm sure we'll work through that in time. If you ask Nolan a question, he still repeats it verbatim rather than answering it. We know that he comprehends the words, but he isn't able to listen to the entire question, process what the question requires, and then formulate an answer. If you ask Nolan, "Where is Daddy?" the response will be "Where Daddy?" instead of an answer. This may be more of an age-related thing than a hearing-related thing: with his excellent verbal skills I tend to forget that he won't be two until next month!

Tuesday, July 7, 2009

Big Relief on the Liver Enzymes

Nolan on Independence Day

The ENT's office finally called me back with the results from the test. Everything is in the normal range but the ALP (alkaline phosphatase), but this is often elevated in growing children. Four months ago, the AST and ALP were elevated, so it appears the AST has come down into the "normal" range.

It is interesting how the test ranges can vary. Nolan's first AST value was something in the neighborhood of 45, but the lab in Jamestown uses a reference range with an upper limit of 30 or so. The lab in Buffalo uses an upper limit of 62, so even though his AST value is 51, he is within the "new" normal limits.

We can take liver function off the "worry list" and focus on his eating issues. My blood pressure just came down a few notches!

Wednesday, July 1, 2009

Well, Actually...

We had our little visit with the ENT today to discuss the whole Nolan-doesn't-eat-anything issue. Since this has put us quite on edge (the total consumed today was 2 teaspoonfuls of yogurt in addition to some milk), we wrote down every issue that we've come across in the past six months (our "worry list"):

  • 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:

"Well, actually...."

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.