6-09-2010 Good News!

Joey had 3 appointments today.

First was his hearing aid check-up. We were supposed to do a sound booth visit, but the appointment was not long enough, and his ear-molds were already too small. So he got new impressions made, and when we pick up the new ear-molds, in a couple weeks, we will do a sound booth test as well.

Second was Lab.

Between having his ears messed with and poked at, and getting stuck to have his labs drawn, he got really cranky. So most of the day he was fussy, with short happy spells. Normally, it is the other way around most of the time he is so happy, and almost never fussy.

Third was his Hematology appointment. After his MRI in May, they said the blood clots were gone, but as a precaution, they wanted him to stay on the blood thinners until the 6 months was up. I started to ask them about that today, because I didn't want to continue shots twice a day if it was not really needed. Before I finished asking, the Dr. said, "Already wrote the orders" and showed me the note that said "Stop Lovenox". Is that great or what?!? It is so nice not to have to stick him any more!!!

Joey will be 5 months old on Monday, he has been on Lovenox twice a day, since he was 8 days old...that is 4 1/2 months of shots! He doesn't know what it is to not get stuck at least 2x's a day (more if it is a lab day). In fact, there have only been 4 days in his life when he has not been stuck. So no shot tonight, and starting tomorrow ... NO STICKS!!!! (can you tell I'm excited?) I call that "good news".

Joey likes his hearing aids!

Yes, I don't know how much or what quality, but he is definitely getting sound, and wanting it. I know ideally you should stimulate both ears at the same time, especially during the HA stage, but he can't lay on them or they squeal, and he doesn't want to calm down w/o them...until he is so exhausted he falls into a fretful sleep, SO I took out the one in his "bad ear" and laid him on that side, so he could still "hear" with his "good ear", and calm down much faster and better. I can't believe that only 3 days in, and this young, he is that possessive of his ears!!! It seems he is almost insecure with out them. (next time I'll try the other side, maybe that will tell if he is getting sound in his bad ear...)

Without HA's he has about 4 very high frequencies that he hears between 85-95 dB in his left ear, and nothing under 110dB in his right ear.

We saw his Ped yesterday...he said Joey is extra social for his age (maybe has something to do w/ 6 older siblings?). The Dr was really amazed that Joey was doing so well after having Kernicterus (jaundice toxicity). Aside from hearing loss, so far there are no other long term things showing up. (Tho it is still possible...)

Well, it looks like we have started our hearing journey, and Joey says "no turning back now, I want sound!"

I think that will make it easier for me if it appears he needs a CI...because he (even at 4 months old) has said he wants sound, so I will continue on the path to get him the best sound I can. Be that HA's, CI's or both.

5-21-2010 Joey got his hearing aids yesterday

Joey got his hearing aids yesterday...that will take some adjustment! Because of the Auditory Neuropathy, we don't know when he may be getting some sound, or the quality of the sound. Also, he hits Auditory overload easily, because he is not used to having sound all the time or at these volumes (and we still don't know how much it is helping). This is a bit overwhelming to me....and to Joey.

We also have window air units, which I learned put a constant "buzz" in his ear when he is wearing hearing aids. So he upsets easy with all that, I think we will turn off the hearing aids when the air is on...at least for now.

I did turn the air off for a while this morning, and he seemed to be ok with the hearing aids for awhile...until he got hungry and tired. He fussed and wiggled them off. It was getting warm, so we left them off and turned the air on. It is still hard to tell if they make any difference, because he is not yet turning when we speak, but he does seem more animated with them on....but he also has animated times with them off....I guess time will tell.

5-20-2010 Hearing Aids Today!

Joey gets his hearing aids today. These may or may not help. If they do, that is great. If not, it is one step closer to possible Cochlear Implants. He has to do a "trial period" with hearing aids before being considered for implants. I'm glad of this, because if the hearing aids are enough, I wouldn't want to do surgery and implants, but if the hearing aids are not enough, it is nice to know that the implants are a possibility.

So, We are about to take a new step on our "journey"!

I found clothes for "Buddy Bear" and this outfit had a bandanna that Paci-puppy can wear. As you can see, these are truly Joey's Buddies.

5-05-2010 Hematology Appointment...MRI-MRV Results

Monday, Joey had a MRI and a MRV (for a close look at veins) of his head and brain. This was done to follow up on the blood clots found on Jan. 23rd, and to see if we could find out how much longer he would need to get 2 shots a day of Lovenox (a blood thinner).

Because Joey was sedated, there was a Peds ICU Dr. in MRI with him. The Dr told me after the MRI, that he was not a Radiologist, but this scan did not really look different than the one in Jan. to him...So, I was trying not to get my hopes up. I anticipated that we would have at least 3 more months of shots, before they would scan again, to check on things.

Imagine my surprise when the Dr. today in Hematology met me with the Radiology report, and said everything looked normal!

They want to continue the shots for another month as a precaution, but it looks like the clots are gone. This would also indicate no sign of a stroke, which they were concerned about with these clots.

I knew that everything was "going to be OK", even if it took more time. God has had HIS hand on Joey through all this. But today was a special blessing.

Joey is growing well too...He weighs 14 pounds now, and is starting to roll over...not bad for a 3 1/2 month old who should have been "developmentally delayed"!

So, for now, he is still on the Lovenox and Keppra, both twice a day, but they are both "as a precaution" and should be stopping soon (over the next 1-2 months).

There may, and probably will, be more bumps in the road, but right now our main concern is his hearing.

So, Is God Good? Or What?!!!

5-03-2010 MRI

Joey did well through the sedation and MRI. He is a bit cranky and clingy this evening, probably from feeling funny with the sedation.

We should have the results when we go to his Hematology appointment on Wednesday.

Thank you everyone who prayed for him today!

5-02-2010 MRI - MRV in the morning ... Hearing aids soon!

Joey goes for an MRI - MRV in the morning (8:30 Monday). This is a fasting/sedation procedure, so if you think about us, please pray that he does well.

This is to check the blood clots in his head, to see if they have been reabsorbed yet. If they are gone, Joey can come off the Lovenox (1 shot in each leg, every day). If not, then we will continue the shots another 3 months, and do another MRI - MRV. We really want these shots done...this medicine stings, so Joey gets not just the stick of the shot, but the pain from the medicine ... twice a day.

We go to get Joey's hearing aids on the 20th! This should help him get some more sound. Even if He ends up getting CI's (cochlear implants), he has to do a 6 month trial with hearing aids first, to be sure he really needs surgery and implants to "hear".

The Audiologists that he saw Wednesday, were very impressed with his continued vocalization, as they had expected him to stop trying to talk, because he couldn't hear. They said his interest in speech will really help him with learning to talk and speech therapy.

Speech (and hearing) will be a challenge for him. He has AN (Auditory Neuropathy) which means what he does hear is "scrambled" (my understanding). He has to learn what he is hearing, what it means (unscrambling it), and how to say it, even tho he may not be hearing it the way it should sound.

Never a dull moment!

Joy