Hearing Tests

Nathanial, Ethan, and Noah went in for another follow up hearing test this morning. Last time, Noah really didn't do well, Ethan did not pass and Nathanial heard enough tones to receive a "pass" but missed a few tones. Since then, Noah and Ethan have had a new set of tubes put in and adenoids taken out (which Nathanial had done two months prior to the last hearing test); so we wanted to see if that would improve things a bit.

Noah did fabulous! He got to take the "big boy" hearing test, which involved wearing headphones, listening for tones, and placing a block in the basket when he heard the tone. He heard all tones today and both tubes were in place and open. He passed, but the audiologist also wants to be cautious, so he is to go in again in three months for another follow up - to be sure his hearing stays good and make sure if the tubes fall out, we catch it quickly enough that we are not messing with his speech too much. I haven't noticed a huge improvement in his speech since the new tubes were placed. He did then and still does, talk A LOT, but he is very hard to understand and that hasn't changed much. At least we know he is hearing, so we can still work harder on speech therapy. It appears that he learned to say things incorrectly and is now having a hard time breaking the habit.

Ethan was next and we tried the "big boy" hearing test, but that didn't work with him. We couldn't tell if he was overly anxious about when to put the block in or not, so we went back to the other way. He also didn't do well with that. So, we have a few options here. Either he has a permanent hearing loss in his high frequency range (which is what we thought last time about all three) or he has "mixed hearing loss" which is permanent hearing loss due to many ear infections/fluid being present constantly (entirely a possibility) or he was tired/stubborn/anxious and just didn't want to cooperate any longer by the time we got to those tones. His tubes were in place and clear, so fluid is not contributing to the problem at this time. When we return for his three month check, we are going to start with the tones he missed today (and last time) to see if that makes a difference. Then maybe we will have more answer....but as I am learning, this is on a constant curve, so we may not know for a long time! The good news is, he did hear in a speech range, so whatever kind of loss he's experiencing today is not affecting his speech ability or learning.

Nathanial went last because he didn't get new tubes in and his tubes were still in place and clear. He did very well with the "big boy" test, but still missed a couple of tones. His was also in the high frequency range. The plan is to continue to watch that and monitor it along with Noah and Ethan.

All three boys were very cooperative and well behaved. They waited well with Daddy and were excellent back in the booth with me. They are getting to be such big boys and I am so happy that they are getting a smidge easier to take out. It also helps when we do things in the morning...by afternoon, they tend to fall apart a little easier!

Part of the hearing evaluation was being done today in preparation for their IEP's, which are being written on Friday. We learned yesterday that the gentleman we had a LOT of issues with with Austin and trying to get him an IEP will be at the meeting on Friday. I need a lot of prayer to hold it together and know that this is a whole different situation and trust that he is not just on a rampage to destroy our family's education (which, OK, so it sounds a little far-fetched, but trust me, this man did NOT like Steve or I at all by the time we were done with Austin's meeting and the feeling was pretty mutual). He was not very educated in IDEA laws at that time and not at all compassionate. I'm hoping he trusts this time what our therapists have to say and that this is a smoother process since all three boys already have an IFSP. Again, prayer would be greatly appreciated!!!

The LORD gives his people strength. The LORD blesses them with peace.
~Psalm 29:11

Surgeries....Again.

Nathanial, Ethan, and Noah have been in speech and development therapy for almost a year now (wow!) and so it was time for their bi-annual hearing screens to go with their evaluations for their IFSP's. Nathanial passed his, but was right on the line of a need for a medical referral. The general consensus was, though, that he is hearing well enough to be at a learning level. So he was ultimately not referred on, which was good because he just got a new set of tubes a few months ago. Noah failed his hearing test massively - completely missing entire tones. He did not hear things no matter how loud they got. Ethan failed massively, also, but heard all the tones, just at very loud levels. So they were referred back to Dr. B for an evaluation.

When we went in, it was discovered that Noah's one tube fell completely out, the other was just barely in, and there was a lot of fluid behind both eardrums. Ethan's tubes were both in place, however they were plugged completely, so no longer working. He also had a lot of fluid behind both eardrums. We decided to go ahead with surgery for both of them.

They went in today and Noah knew when we got to the floor just exactly what was going to happen and started sobbing. I was able to distract him with a new blankey and teddy eventually. (I love the hospital that we go to for this - it is very progressive and very comforting for little people, especially considering it's in a town with a population of about 9,000 people.)

Ethan went first, which was a huge help because he doesn't have the propensity for drama that Noah does and he feeds off Noah. He got right in the little wagon and said "bye-bye" to me and was off. He was done in about an hour and Dr. B came in to chat with me. He had a ton of thick mucus behind both eardrums, which was drained and his adenoids were "huge." She feels his speech and hearing should be drastically improved now. His one tube was also fairly buried in his ear, so she had to do a little more "work" to get it out. She said we will probably see more bleeding from that ear than the other three ears and just to know that was why. As soon as they took Noah back, they came and got me for Ethan in the recovery room. He was saying miserably "mommy, mommy, mommy" over and over. Once I started to hold him, he did much better. We got in a lot of cuddle time while Noah was in surgery. Ethan also had/has some breathing congestion now, but they said that should clear up in a few days. He wasn't so bad that he needed a breathing treatment (like Nathanial) which was reassuring; they just heard a lot of "gunk" in his lungs afterward.

Noah went next and because Ethan went without much fanfare, Noah got in the wagon and said "bye-bye" to me, also. Noah had a ton of pus behind both eardrums, so was given iv antibiotics while also being given fluids (Ethan also received iv fluids). Dr B is not sure if he will ever get back some of the tones he totally missed (there was indication of damaged nerves from birth on for those tones), but they are "not tones he really needs." Interesting....

Noah had some dramatics coming out of anesthesia (as always) so one nurse came to cuddle with Ethan while I went back to recovery with Noah. He did better after I got back there and was able to hold him, but still had the little sobbing-breathing problem and would just break into more sobs on occasion.

Ethan drank right away and ate an entire popsicle, but Noah refused. He was not allowed to have the IV pulled until he drank 6 oz of juice and half a popsicle so they could see that he would indeed drink and not vomit when he got home. It took him a good 45 minutes to decide he wanted to go home bad enough to drink anything. As soon as he did, we were GONE.

This afternoon, both are rather hyper and not wanting to rest or nap at all. I believe they may be ramped up on pain killers, but they need to rest. They are recovering well, though, and really don't seem to be in any pain...by now we should be almost out of the effects of the pain meds they had at the hospital!

ENT

Nathanial, Ethan, Noah, and Aidan had their ENT appointments today while Austin was at camp.

Steve and I believed Aidan was not hearing. Well, their is no fluid behind his one ear with no tube and the other ear still has a tube in place. Hmmmm....interesting. Our only conclusion is that we are now dealing with "selective" 5-year-old-boy hearing loss. Dr. B is going to leave in the tube until he can get through one winter with no ear infections, one cold/flu season at school, and learns to pop his own eardrums (we worked on teaching him that today and now we have to practice). Then if it is still in there, she will remove it and patch up the drum. The other one fell out and they are supposed to, but apparently sometimes they do not. Since this one has been in place for over a year, she isn't sure it will fall out on it's own, so that's the plan for now. He will continue to go in every six months for follow ups until either it decides to fall out or she decides to remove it.

Ethan's next on the list because he was also fairly simple. He has fluid behind both drums and will get tubes. Hopefully, once in place, his speech will pick up.

While Noah seems to hear fantastic, his ears were the most fluid-filled and he will also be getting tubes. It isn't affecting his speech as much, which is great. Hopefully after the tubes are in place, it will really pick up.

Nathanial was the most difficult to go through and listen to the ENT because of what she said. So far, the AEA lady and Dr. B (ped) would not give us solid answers and both refered to Dr. B the ENT. Nathanial had the flat line on the tampanogram and did horribly on his hearing test at the AEA. So because of the flat line, I had assumed that his would just be a matter of putting in tubes and he'd be fine. Not necessarily.

Before Dr. B (ENT) checked into Nathanial's ears, she said that most of the time speech and hearing problems are just due to fluid and tubes will take care of any issues. When she looked into his ears today, however, she noticed very little fluid. Then she started asking about any birth traumas, birth weight, speech (non-existent, other than glorified cooing) and any other issues. She did the little hand rubbing thingy and got no response and observed he had no clue when his name was spoken. I told her about the clapping hand thing and no response and she went over his test results from AEA and Dr. B (ped). Then she started telling me about options. This is when I got VERY nervous. She has been Aidan's ENT for the last two years and never said this sort of stuff and she didn't say it in reference to Ethan or Noah, either.

She wants tubes put into all three of their ears as soon as possible, then we are to repeat testing on all three two weeks post-op. If Nathanial doesn't have immediate improvement, then she will refer him to a pediatric ENT in Iowa City. She said either she or they will do an "ARB" (I think) test, which would put sound waves into his ears and measure brain wave responses to see if there are any "disconnects" there. She reassured me that a lot can be done, and even if he has severe hearing loss, he can have cochlear implants at his age now and they are safe and effective. She said they are learning the sooner they get the implants the better they do.

The good news is.....he does have some fluid behind his drums, so we are praying the tubes do the trick and even though it's minimal, it is there. The other good news is that they CAN do things to help his hearing now, if tubes do not help him.

Steve researched cochlear implants tonight and panicked at the prices, especially if our insurance gets bucky (which they've been known to do). I told him he was getting WAY ahead of himself and let's first see what happens with the tubes.

Now we just need prayers that the surgery goes well. For now it is scheduled for July 7, but noone can go with me, so I am trying to rearrange that.

Hearing Test Update

The results from the hearing tests were somewhat surprising (Noah's) and exactly what I thought (Nathanial).

I'll start with Nathanial. He had a flat line in both ears again on the tampanogram thingy and also failed all areas of the other ear tester thingy. We let him rest for a bit, while we then tested Ethan and Noah. Then we did an actual hearing test on him to see what, if anything, he IS hearing. Well, he has moderate hearing loss in both ears at this point. She was pretty sure it will get better if he gets tubes because the tampanogram and other thingy indicated fluid behind the drum, so that was our fantastic news as far as that went. I was happy to know she doesn't think it is permanent nerve damage, but we will have to see an ENT to know for sure. This was what I had suspected so I was prepared to hear it.

Ethan also had a flat line and failed the other thingy in his left ear. We could not get his right ear to respond at all to either machine and couldn't see any actual blockage in front of the drum, so he will have to have an ENT recheck it. However, he is also going to need tubes in both ears. We did not do an actual hearing test on him because he was ornery by that point and we know that he isn't hearing by his other tests, so it wasn't really important. It was, but I was willing to let it go...Nathanial I NEEDED to know so I had some idea. And then I can also judge the other two.

Noah was surprising. I thought he heard pretty good and the flat line in Dr. B's office was a fluke. He almost always responds to his name and he repeats things. (Said "yuck" and "ahhh" while opening his mouth today for the first time.) Plus he is super chatty. Well, he flatlined the tampanogram and failed the other thingy in one year, passed in the other but barely. It was a -4; and -5 is failing. So he hears somewhat in his right ear and almost nothing in his left ear (scored the same as Nathanial).

We now go to the ENT in two weeks, with four kids. Aidan has to have his recheck on his tubes, plus the babies for the consultation. I'm thinking all three will need tubes. Nathanial and Ethan need them in both ears, and Noah flatlined in both ears, with the other thingy doing slightly better, so I don't know what they'll do there. I actually hope all three get the tubes just so they all hear "normally" and we don't have to worry. At least I know what to expect since Aidan has had it done, so I am not worried about the actual procedure.

15 Month Appointment

The boys had their 15 month well baby check last week. Overall, they are doing great with just a few concerns. Developmentally, they are also right on track. I was really worried about their speech. I had heard recently that a 15 month old should have 10-15 "meaningful" words; say "mama" and "dada" specifically to mom and dad; "uh-oh" and "oh-no" should also be part of their vocabulary. When I told our doctor of our concerns, he said they are right on track and not to worry about it. Noah says "mama" and "dada" but not specifically (and we were told that's all he should be able to do...say it). Ethan rarely says it and Nathanial almost never. They all shake their heads "no" and "yes" and will put their hands on their head for "Oh, No!" or "Oh, my aching head." So they do mimic that. They also all point and make fantastic eye contact. These are important milestones for us as they can be early indicators of autism.

Nathanial's stats were as follows:
Height: 30 3/4"
Weight: 21 pounds
Head: 18"

Ethan's stats:
Height: 30 1/2"
Weight: 21 pounds
Head: 18"

Noah's stats:
Height: 30 1/4"
Weight: 21 pounds
Head: 18 1/4"

They all weighed exactly 21 pounds and their lengths were within 1/4 with Nathanial being tallest and Noah being shortest...not a big shock. Even though Noah's head looks so much bigger than Ethan and Nathanial's, it's only 1/4" bigger and does put him in a slightly higher percentage, but he is still on the little side (I think 20th %tile).

Now for the concerns. Nathanial doesn't respond to his name at all, doesn't flinch hugely at loud noises, doesn't turn when I enter his bedroom if his back is to me, and is extremely quiet. While I think some of the quietness is just his little personality, he doesn't "say" much at all. Ethan will generally respond to his name, but also appears to "ignore" us quite often and also doesn't say much at all. Noah is very chattery and seems to respond to his name and do pretty well with everything. I mentioned their lack of speech and my concerns that Nathanial wasn't hearing. They all passed their newborn screening, with Noah actually having the worst one. She did his several times over until she finally got something. Our next step was to check their ears to see if Dr. B could see anything wrong. If not, we would take a wait and see approach. He did the tampanogram (?) (Aidan's had it done several times) and nobody produced a spike. Not a single one of them, they all had flat lines. We were originally just going to check Nathanial and Ethan, but then decided to do them all, just to see. I was most surprised at Noah because he seems to hear pretty well. And he may be fine after all. We are now getting all three in to have their hearing checked next week and will go from there with whatever those results show. To fix it, most likely, they will only need tubes and that's not a big deal, so I feel OK with that. I'm just relieved to know there is fluid build up behind the drums because I was really worried something more was wrong with Nathanial. Steve has tried clapping his hands loudly right behind their heads to see if they react....they don't. Nathanial will sometimes turn around and smile, but never jumps, flinches, nothing. Ethan will sometimes flinch a little bit but doesn't jump or anything else and will also turn and smile. Noah will turn and respond with a smile also. So I guess we'll see what happens next week.

Our other concern was Nathanial's leg. When he was probably 6 weeks old, he developed a "birthmark" behind his left knee. That "birthmark" started cycling through a little system. It starts out looking like a birthmark, then gets a blister on it, then it pops, heals, then starts all over with the birthmark stage lasting at maximum a week. I mentioned it at his 2 month appointment and we started using hydrocordisone (sp?) and Aquaphillic on it three times a day. We have kept an eye on it and continued to do this for the last 13 months, with no change at all in the cycling or appearance. It does itch terribly, I have realized since Nathanial has been in shorts. And now there is another spot about 1-2 inches above the first spot that looks exactly the same and is doing the same thing. It is now time for him to see a dermatologist to figure out what it is.

Nathanial is definitely allergic to strawberries, so we are assuming Ethan is also. Noah will not get them until he is at least three and maybe not even then. Not sure I want to have them in the house ever again.

They recieved catch up Pediarix and Prevnar shots and will not recieve the MMR until after the new baby is born, due to the risk to the baby.

All in all, a great appointment!

Nathanial's update:

We went to the dermatologist today. Nathanial's spots are more than likely (90% sure) mastocytoma. Which is essentially a mass of cells on the skin, which blister and burst and when they burst they produce histamine which causes them to itch (hence all the scratching). He said he was ruling out eczema because it wasn't rough and patching and ruling out herpes simplex (what?!?!?!) because it is only one small bump and not several littler ones. The only way to know for absolute sure if this is what it is is to do a biopsy and, thankfully, he doesn't want to do that on someone so little. We are going to start with a super potent hydrocordisone cream once a day that will hopefully stop the cycling and eventually, he will outgrow it (as an adolescent or adult). If this doesn't work, then he may do the biopsy. We also may follow up with an allergist to check on all possible allergies Nathanial has because that "might" be contributing to the cycling. We're not thinking about any of that at this point, though...we're just hoping this cream does the trick to stop the cycling!

Next stop.....hearing checks!

Am I EVER going to feel better????

So now it's in my chest. Lovely, just lovely. Seems this thing is just enjoying working it's way through my body. And as much as I would have loved a nap today, I couldn't do it. Aidan had his follow up on his hearing and I had a haircut. Try rescheduling that right before Christmas.

Aidan's tube was out of his left ear, but they said his hearing is "normal." They put him in a soundproof booth and tell him to sit very still and not get the wiggles, lest he hear the tones, and then pronounce his hearing "normal." Sure, in a silent room, with noone moving or talking, he hears things. In the real world, he doesn't. So she pulled the tube out of his ear and said she will see him in six months, unless we have more trouble. Well, I guess it's useless to point out that he isn't hearing at home or at school, even though she was told that. Because her test says he hears. So we wait again.

Another hearing test

Aidan had a massive ear infection in July. His first ever and it was nasty. When we took him into his ENT to have a look, we found out he had a lot more going on than "just" an ear infection. We got it all straightened out and still felt like he wasn't hearing well. She looked and both his tubes were still in place. So we decided to wait until he started preschool and then do the speech and hearing evals through AEA.

He had his hearing evaluated in October and didn't do so hot. I got a letter home that day that said he had failed in his left ear and if we wanted to take him in before we got the formal evaluation report back, we could. We decided to wait until we got it back. We got them back today and they were not good.

The audiologist says that he has "significant hearing loss" in his left ear. He is not at a "learning level" with that ear. The formal recommendation from AEA is to get him into his ENT asap and have him sit with his right ear towards the speaker and other kids. That was a little overwhelming. I knew he wasn't hearing, but I had no idea it was that bad. So I called his doctor and he goes in December 12. Hopefully it is just that he needs tubes again and this is permanent damage.

Tonight, Steve was talking to him and he kept saying "What?," "What did you say?," like always. So I told Steve to try talking near his right ear. So, we turned Aidan and Steve told him in the same tone of voice what he had said and he got it instantly. It was interesting because Steve was NOT facing his left ear, he was standing directly in front of him, and he still couldn't hear until Steve stood near his right ear. Explains why he sits on top of the TV, with it jacked way up and why he can't hear me. We went through all this before, but since he was hearing some of what we were saying, I didn't think it was so bad.

He had his speech evaluation done a couple of weeks ago and we haven't heard anything back yet on that. The audiologist said that his speech would more than likely be affected by his lack of hearing in his report, so I guess we'll just wait and see what the SLP said. If she takes as long as the other guy, it will be a while before we hear back.