Dear all,
Sorry it took me so long to update. Jet lagged kicked me in the behind all week last week and things have been crazy this week. We are going through some big life changes that will happen towards the end of this year so things have been even more crazy as usual.
Anyway, Isaac's evaluation went quite well. It seems like the occupational therapy and physiotherapy he has received have really helped him. I have put physiotherapy temporary on hold right now as we are still trying to get our insurance company to approve coverage of all of his therapy. I figured he needs occupational therapy more than his physiotherapy right now so we have continued with occupational therapy despite the risk that we may not get reimbursed for those sessions. In any case, I digress. His fine and motor skills are slowly catching up. As expected, he is very, very behind in speech as he is still basically non verbal. He was rated at 12 months for speech.
We also checked his eyes out and were relieved to receive confirmation that his myopia is still mild so he probably won't need glasses for a year or two.
We were, however, a bit surprised to find out that he has suffered most likely permanent hearing loss. We actually didn't think he needed his hearing checked as his doctors here didn't think he needed it. However, because his speech has been so delayed, I thought I should get his hearing checked just in case. So thank the Lord we did. However, since Isaac wouldn't keep headphones on, we were not able to get precise results so the pediatric audiologist recommended that Isaac gets ABR testing done before he gets fitted with hearing aids. We are still trying to figure out whether we can go back to the US to get this done or not. If anyone has any experience with ABR testing and having their toddler fitted with hearing aids, I would love to hear about your experience. I am trying to figure out whether it is possible to do the ABR testing and get Isaac fitted with hearing aids within about a week. This is because if I were to go back to the US to get this done, I would go with Isaac alone (without Abigail) and I don't want to leave her for too long.
So all in all, it was a very good visit for us. Although I was a little sad to find out that our little boy will probably need to use hearing aids for the rest of his life, I am glad to find out perhaps one of the reasons why he is so speech delayed. In addition, as I say all the time, things could have been so much worse for him, this is really don't that big a deal in the scheme of things. One thing I am curious about is when he does need glasses, how we can fit glasses on top of hearing aids (when kids are still growing, the hearing aids will have the plastic tubing on them so that they don't have to get new hearing aids fitted all the time as their ears grow bigger).
Isaac began speech therapy last week after we returned from the US. So far, Isaac has not been cooperative at all during speech therapy as he refuses to make any sounds. So the sessions have seem to be very ineffective to me as a layman. I guess we will see if he makes any progress after a few more sessions.
On another front, Isaac seems to be a teeny little bit more adventurous with what kind of food/texture he is willing to put in his mouth. He ate his first grape this week. He has never been able to chew and swallow grapes. He has put grapes in his mouth but he would spit it back out. This just happened yesterday though today he put it in his mouth and spit it back out but I still think its progress. Plus he is now willing to eat spinach without it being pureed though he likes using his heads and picking up the spinach stems (funny boys doesn't like the leaves) and putting them in his mouth like he is trying to eat noodles with his hands. Unfortunately we also discovered that he is mildly allergic to olive oil. He was eating my spinach yesterday which was stir fried with olive oil. After eating a bunch of them, the skin around his mouth got red and blotchy. Actually, this isn't really a new discovery. He had a skin reaction over a year ago when I added olive oil to his baby food and it got on his face as well. We stopped giving him olive oil after that so now I guess we confirmed the allergy. I think being allergic to olive oil is very, very rare so this was suprising. Jong is now wondering may be Isaac's food aversions might be partly related to allergies we may not have discovered yet. So if Hallie's mom is reading this, how did you discover what Hallie is allergic to? I mean, Isaac doesn't throw up his food. He has been tested for some allergies - some nuts, shellfish, etc. and he didn't seem to be allergic to anything except for peanuts and now olive oil?
Well, unfortunately, my head is killing me right now so I will sign off for now. I will try to put some pictures on later.
Take care,
Sonia
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5 comments:
Hey Sonia,
Don't know if you remember, but Henry used to be allergic to nearly everything but air! He was your basic no wheat, eggs, citrus, soy, nuts, milk kind of guy. We discovered this when he was less than one - - but then in Japan he started having more problems. We took him to a great allergist there in Japan at a children's hospital. I loved the guy and the hospital. I will look in my records and see what his name was (it seems so long ago), but I know that I was recommended to him by the pediatrician's office that is right across the street from National Azabu Market. I loved them as pediatricians, and they had recommended this guy. Turns out that he was allergic to Japanese Cedar Pollen. Good news is that most of his food allergies cleared up by the time he was 6. Makes eating a whole lot easier!
Love,
w
Hi Sonia, I can chime in with our experience, and hope that it helps...
Eden had 2 ABRs done shortly before she left the NICU, and failed both. We had one done at 3 months adjusted age, also failed. We had a fourth, and final, done when she was 6 months adjusted. The last was done with her sedated (used chloral hydrate). This is when Eden was officially diagnosed with profound bilateral hearing loss.
We had to do a 3 month trial with hearing aids before getting approval for her cochlear implant, so I was on a mission, hoping to get her implant done before her 1 year age adjusted bday (due date).
We switched hospitals and audiologists after we found out she would need the implant, so had to make an appointment with the second hospital to have her fitted for the hearing aides.
I do think you could get ear molds made for hearing aides at the same time as the ABR, if you let them know the situation in advance. There is a little wait time between doing the molds and getting the aides, and also more testing in a sound booth after you get the aides. I am not sure you could do all of this within a week, but maybe if you find an audiologist/hospital that is willing to work with you, you could maybe do it within 10ish days.
These things are possible, but you have to find someone willing to cut through some of the red tape:)
HTH
Billie
Hi Sonia,
I'm so sorry about the hearing loss, and yes, it can explain a lot in terms of Isaac's speech. How is signing going? The key thing is to give him a way of communicating; then, once he's got hearing aids that help, he'll be able to replace signing with speech.
On the allergy front: oh, goodie, my favorite topic. For us, it's always been and looks like it will always be a matter of trial and error. Not all allergies show up on blood/skin prick tests. Of course, our luck, those are the ones Hallie has. So we watch her reaction to food as a way of figuring out what's going on. Her symptoms are mostly GI (massive increase in reflux, vomiting until she turns blue gray, probably blood pressure drop. She also gets rashes and eczema from eggs and some grains on top of that). The first thing we did was put her on an elimination diet. We knew she was safe with goat milk and its products and that apples and pears were okay. Her allergist had her patch tested, too (a new kind of skin test---kind of annoying---bits of food protein are put on a disk taped to the child's back and left on for 48 hours and then checked). She came back positive for eggs, wheat, and barley but not soy. So we eliminated all the positives and tried her on soy--starting her on minute quantities and working our way up, over the course of a few days. On day two reflux kicked in like crazy, on day three she started vomiting profusely and we stopped the trial. We did the same for rice (fail), beef (we think fail--we may try this again at some point because the fail wasn't as bad as others were and it was hot dogs, so maybe she was allergic to celery juice or something), prunes (pass, thank God), apricots (pass, but she can't have these every day because they make her tummy hurt in large quantity), etc and potatoes (another pass---which gives us french fries). It's a maddening and slow process. After every fail, it takes at least a week, and after soy and rice more than that, to bring her back to normal. And she also had seasonal allergies and when she's having an allergy attack (she's on zyrtec but some days the ragweed and pollen is so bad that it doesn't clear things up 100%), she vomits more than usual so we don't do food trials. We have no idea if these are life-long or if she'll outgrow them, and no one is sending us a memo on this (why our kids don't come with user manuals I don't know!). So we're stuck where we are, but I have to say that 1. she's so much happier now that she's not vomiting all the time and so are we...kind of an understatement and 2. we've made some progress on the texture front so there's hope that some day she might eat real food and not that which comes in jars or that which we puree.
I hope that whatever Isaac has is milder than Hallie's form of allergies. You guys already have rice, and I am massively envious of this. Not having a grain (Hallie also had a violent reaction to buckwheat, and one that almost had me on the phone with 911) is hard because we can't think about bread or cake or anything. But, like I said, she's happy, gaining weight, doing well developmentally, and so if this is what we bring out of the 23 weeker experience, we can live with it. Anyway, let me know if you want me to look up any stuff for you or follow up on anything. I know way more about food allergies than I ever believed possible and can recommend some good books, places to start reading, etc.
Start looking into sign language classes for Issac. I also think that you can buy sign language books so that you and your husband and daughter can also learn so that Issac will not be left out of the conversation.
<3 so glad to read the update.
im so thankful that you are looking at things from a bright perspective.
love you <3
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