ENT visit at Children's Hospital

Yesterday, Logan and I went to see the Pediatric ENT at Children's Hospital.
As far as his hearing...they repeated the test he had last week with the same result, a fail. So, we were put on the day surgery schedule for a sedated auditory brain response test. They told me that due to is DS and his breathing issues he would need to be put out for the two hour test. At least this is the last test they can do, it will give us all of the answers we need. BUT, the soonest we can get in for this test is the middle of April!! I even asked if we could do it closer to home at a different hospital and they said no. We are on a cancellation list, so I am crossing my figures that they well call with an opening soon.
As far as his breathing...the doctor said that Logan sitting up to sleep sounded like it was working well for him, so we will look for a different sleep solution when he can no longer sit in the car seat. And as for his cough. He said it sounds barky because of Logan's narrow airway and is probably caused by extra saliva or drainage, but if he starts coughing more than only intermittently during the day and at night, we have to have his airway looked at. I guess they would send a camera down his throat to take a look. He could have one of many possible structural abnormalities in his airway. He named a bunch, but they all had weird names.
Good news...the hearing test they did perform showed that Logan is most likely hearing at some pitches, and it is possible that the test didn't detect reaction to the other pitches because of the tubes in his ears. So the doctor said there is a chance that he is hearing well.

This duck for the tub is working great for bath time! I was getting frustrated because Logan is too big for an infant tub, but can't sit up in the regular tub. I thought he might slip around in the duck, but the bottom is grippy so he can sit and lean against the tail (or it also makes a great head rest!)

Scratch that last post!!!

They called me back...and we got moved up to Tuesday!!! The scheduler did not realize that she was talking to the Logan who the ENT doctor wanted to see as soon as possible. He wants us to come down soon not because of the hearing loss, but because of his possible airway obstruction. So finally, we may get the breathing stuff figured out.
I feel MUCH better now!

Pure Frustration

Logan can't get in for his appointment with the Pediatric ENT until February 2oth!!!! The first person I talked to told us the first appointment was March 24th, but I pushed to get him in ASAP. And the appointment is only to meet the doctor and have his initial evaluation. We have to go back for his "surgery" to test his hearing. (he needs to be sedated for the ABR, so I guess they call it surgery) I guess I will be waiting even longer to get the answers I need...

Sleep Answer ??

Ok....I thought I had solved a problem, but now I may have a new one.
I thought Logan was sleeping better at night since I started having him sleep sitting up in his car seat. He has always slept through the night, but I discovered he was not getting a good night sleep due to sleep apnea, his laryngomalsia or something (still don't know). He is awake more during the day but he now falls asleep in his high chair at dinner and sometimes at lunch too! He is taking two good naps each day and I would say he is down to about 14 hours of sleep, which is much more in the normal range for his age. It is frustrating...he has fallen asleep during dinner 3 nights in a row. I guess I am hoping he is just adjusting to the new sleep schedule??? I have so many questions for the ENT on Monday. Also, Logan still struggles to breath easily when he is sitting up at night. I am hoping I can get Logan a sleep study among other tests that were suggestions from other Moms. (Thanks!)
We are still getting his hearing tested on Monday, but I feel much more confident that we will
not discover a hearing problem. Since Logan's ear tubes I have noticed him turning his head to my voice and his name. OT was still concerned though because Logan was still not responding to rattles this week, so we will see.

Sleepy Logan

I am very excited because I may have discovered something HUGE!

When Logan was at the ENT a couple of weeks ago we talked about sleep apnea and the doctor suggested having Logan sit up in a car seat to sleep. At the time I thought that was a little extreme. I just thought about how uncomfortable that would be for him.
Well, since then I have been getting more and more frustrated with how much Logan sleeps (sometimes 18+ hours a day) and he tires easily so we weren't getting much exercise in. Two nights ago I was up at 3am listening to him sleep and I discovered that he was very restless and was coughing a lot. Over the 3 hours I was listening to him there were only short periods where he was still, quiet and not snoring. I was instantly very upset that I had not discovered this earlier. I think the sound of his humidifier in his room was stopping me from hearing how noisey he was. He also never cries at night.
So, for the last two nights he has slept in his car seat and I have seen a huge difference in him! Today, he has only taken one nap (about 2 hours)!! Usually by the afternoon he has napped for over 4 hours. Also, he did great for OT today. OT is usually the hardest for him because he really has no interest in using fine motor skills. Today, he only did a few little things for her, but that was a big difference from past visits.
I still feel like a mean mommy for making him sleep sitting up, but if he is happier and more alert during the day, it's worth it.
Logan will have his hearing tested on the 21st and I plan to talk more to the doctor about what to do for his sleep apnea and laryngomalasia.

New Year, New Adventures

"To new adventures".....life is still keeping it interesting, someone has to keep me on my toes.

I took Logan to an ENT on yesterday. I took him because his occupational therapist questioned his hearing and I was still very concerned about his cough (that has been around since September) and the fluid in his ears. I learned a lot from the doctor and now I wish I would have taken him sooner. Some concerns the doctor had was his breathing while he is sleeping (sleep apnea), fluid in his ears and his hearing. First, they did a hearing test and they were unable to get a result because of fluid in both of his ears. They did find that his ear drums are not responding the way they should to sound, but before they can find out if it is a hearing loss, they need to drain the fluid and put tubes in his ears. Two weeks after the surgery they well retest, then we will finally know if he is hearing well or not. We were also told that Logan needs to sleep with the head of his bed raised or in a car seat to help him with his breathing. I didn't realize that sleep apnea is pretty much a for sure thing for him when he is an adult and the doctor wants to eventually take out his tonsils and adenoids to help with that. I am concerned that the reason he sleeps so much is because he is not getting the proper amount of oxygen at night. I feel guilty for not thinking of that earlier...we will just have to wait and see if there is a difference in him after the tubes are in and his is sleeping upright.
He will have the tubes put in on Tuesday.