ENT!

Today was the postponed and postponed again ENT visit. Or the Ear, Nose and Throat specialist. Why did we go you ask? Back in December we had a very lovely sleep study at Ty's pulmonologist and sleep doc. She was not impressed with Ty's ability to stay oxygenated at night. She said she felt he had sleep apnea. Part was centralized ( which is bad.. oh so bad) but the moajority of it was obstructive. Which if you are gonna have apnea that is the "better" one to have.

Centralized apena means that some where in his brain is a problem that is not allowing him to keep breathing. But the obstructive usually means that the child has something that we can HELP for him to sleep.

So off to the ENT we went. The ENT that we went to was great. I was pretty impressed with him. His bedside manners was very impressive. He was very kind to Tyler. He was VERY gentle and didn't seem to shocked to see that we were sitting there.

Generally, in specialist appointments ( especially since the depo lupron) that I find myself over emotional. This time.. NOTHING. Just had a lot of questions. I think I felt like they wouldn't come out with this SHOCKING and horrific problem that we couldn't fix.

As we did our exam ( and I say we because ME gets to hold down Tyler) Ty did pretty well. He didn't freak as much with this doctor as he did with his pediatrician yesterday. There was apparently lots to see and talk about.

The "funky" ear from yesterdays visit is in fact infected. Which means that in 4 years Ty has now had 2... THAT IS RIGHT 2 ear infections all in the last six months. Because he didn't get them when he was little they are concerned that he has a continuation of fluid going on behind his ear. So Ty is on antibiotics AGAIN and ear drops.

Next up were those pesky tonsils. Tyler doesn't get sick that often. So it was a little "shocking" that he needs his tonsils out. The tonsils at first glance look great till he saw that they sit down lower than "normal"and the bottom part of his tonsils are so big they almost touch. Which means that OUT they come.

For most ( me included) I thought ok lots of kids get their tonsils out. In a few days he will bounce back and be fine... Oh no. So apprently with kiddos "Like Tyler" we will have to be for 24-72 instead of the normal same day. Because we are cutting into his throat we are opening up a HUGE risk for a shunt infection. So prophalaxis antibiotics will be givn before and after. Chances of him landing BACK into PCMC for dehydration is more than 50 percent because he cognitevely does't understand bribery in orer to stay hydrated.

Last but not least, though we need them out in a bad way Tyler is at HUGE increase risk of any "elective" surgery being done during RSV and Hn1n we get to wait till it is over. He has like EVERY risk factor for bringing home more than he went in with .

So yes, Ty needs his tonsils out. No we won't be doing it soon. Yes we will have to stay over night. No I don't really want to. Hopefully it will answer and solve some of Tyler's intermost secrets.... WHY DOES he NOT sleep!?

My Brave Hero...... ABR test!

Yesterday was the day that the doctor confirmed that our son ignores us. That's right folks, at the ripe old age of 3 Tyler has selective, not listening to you mom and dad, hearing. He beat ALLLL of us.

The results of the test were actually really good. We, as his parents, really felt that we were doing this to see if there WAS hearing loss on some level because we have such yucky speech problems. We KNOW he hears so we weren't worried about them saying he can't hear.

Well, the confirmed perfect hearing was no shock. It came at great relief. But also major disappointment. Don't get me wrong I didn't want Tyler to have hearing loss. But I wanted there to be an answer as to why we lack speech. NOT communication but SPEECH. There is a difference.

The Test done today was called an ABR. (Here is the boring medical stuff so I can show up on google searches, skip if you want.)

Auditory brain stem response (ABR) test

An infant ( in our case a 3 year old) is sleeping or sedated ( for Tyler he was under anesthesia) for the ABR. An infant may be sleeping naturally or may have to be sedated for this test. Additionally, older, cooperative kids may be tested in a silent environment while they're visually occupied.( yeah didn't work.... hence the test today) Tiny earphones are placed in the ear canals. Usually, click-type sounds are introduced through the earphones, and electrodes measure the hearing nerve's response to the sounds. A computer averages these responses and displays waveforms. Because there are characteristic waveforms for normal hearing in portions of the speech range, a normal ABR can predict fairly well that a baby's hearing is normal in that part of the range. An abnormal ABR may be due to hearing loss, but it may also be due to some medical problems or measurement difficulties.

So we know he is processing, hearing and using the information. Yay for Tyler.

Now to find out where to go next. There has to be an answer somewhere. Till then, we will just sit back and enjoy the cute signs and gestures he gives us. He is very smart and has been doing really well.

We are very proud of him. He is our hero.

The aftermath of the anesthesia is pretty nasty. He screams and cries and kicks and gags. Once we got the nurse to go away we got him calmed down just fine. She came back to take off the IV and that sent him into a fit again. After all the surgeries lately we have noticed a little increase in irritation with the tape. It left some nasty marks.

We went to sit till they discharged us and he wouldn't stop crying until the bracelet, and the band aid from the iv out. After that.. perfect. He came home and played all day. He has owie's on his ears but otherwise he is fine.

Here is the many faces today of our Hero:

The nasty stuff on his face is chocolate. He got a donut at the store because his mom is a sucker. The mark on his upper cheek is from the tape. I really think we need to remember next time to have them use the tape they use on allergic kids.

Updates?

So I have been watching and stalking and waiting for everyone to update and I don't even update. The sad part is we haven't even done enough to update.

Life is going good. Ty is so much fun. We have our moments when things are a little touch and go and I would like to fed ex him or UPS him to his grandparents but who doesn't when they are three.

We had a good couple of therapy sessions for Tyler and he is doing so well. I hate that therapy doesn't see as much progress as it use to but he had a great therapy session in speech. We still have no answers as to what to do to make this kid talk. At least some signs are coming through .

We have a scheduled ABR for him next Tuesday. If there is some hearing loss I am hoping that we can reverse or help him with hearing aids etc and get him on to communicating.

We are planning a trip to Utah in June so be prepared if you want us to visit, hang out or take photos.. How fun for me!!

We plan to hit the Zoo and the Pool and as many favorite eating establishments that we can fit in. We are coming from the 6th -12th... so long enough..

Other than that we are here, we are getting warm and Arizona is in full spring bloom.

Bad Day- Good Day?

Bad days happen. I am not worried. Sometimes it takes a little bit before some things sink in. I am not worried about the hearing test nor the thought that he "might" having hearing loss. For one thing, if he did he has had it for 3 years. Second, then we can fix it. Third, I really don't feel like he has any loss. I think he has just had so many people poking at that sweet little head he doesn't want them to touch his ears, let alone poke things in them. He does pass the vision/hearing exam.

I think it just feels like the icing on the really yucky cake sometimes. Most of the time the cake is pretty good. In fact most of the time it is fabulous. But every now and again the cake has a bitter nasty place. Take a bite but then stop cause it tastes yucky. Soon it will be back to YUMMY.

Along with bad days come just the crappy stuff that puts you over the edge. You know, the stuff that when you bite the bitter and the icing is there and makes you cry. A lot of that happened today to. The eye specialist we see for Ty is very hard to get into. After his last shunt surgery I called to get in because we have to have baselines after major brain changes. Well they couldn't get us in any sooner than the appointment we have had set up for six month so I waited patiently. No biggie.

I called last week to double check the appointment and they called yesterday to confirm we were coming. Told them yes. Today we get a call letting me know that they needed to have it CANCELED. I was like OK why? Thinking if the doctor was sick no biggie. Well apparently in the 3 calls and six month wait the referral expired YESTERDAY. If I didn't get a referral in to them by the appointment I would not be seen. Um we had a pediatrician appointment on TUESDAY. A little notice that I would need another referral would be fabulous. it wouldn't have been a big deal at all TUESDAY.

An appointment that I have on Tuesday of next week also needs a referral (which isn't a problem since my doc was sending me there) and the specialist that we are seeing needs some of my past medical records. I call to verify that the insurance referral was sent and that everything was done. She calls back (after telling me it was all set) telling me that I need to come in and sign a release for my medical records. I was thinking " If you are referring me and I am walking out of YOUR office don't you think you would have me sign YOUR release form?"

No big deal right. Well I had respite today and she didn't come. Didn't tell me she was not coming so I waited all afternoon to run errands. These errands included buying diapers. Kinda a needed thing in a house of a none potty trained 3 year old. Oh and the laundry soap to stop his rash.. yeah needed that to. Dallas was nice enough to deal with the said amazing 3 year old so I could run over, sign the papers and get the needed items.

So now I sit in a quiet house, editing some pictures and loving how sweet Tyler is and how amazing Dallas is. They are so what I need at the end of the day. I couldn't ask for anything better........

Except...... I entered a contest a few weeks ago during Cerebral Palsy awareness week and won. The goods came in the mail. Took Pictures for you all to see.


AND I totally scored the coolest shoes at Walmart last night. I decided that EVERYONE is getting a pair for their birthday this year.



And how could the day really be THAT bad when you walk in from your errands and see THIS!!!