15 months

Wearing hearing aides this month has been very challenging.  Before the new earmolds arrived (a couple weeks ago), he constantly pulled them out and often wiggled his fingers into his ears.  It's so hard to know if he has an ear infection or other irritation when he keeps doing this.  Travis checked his ears a couple of times and the Pediatrican checked at his well-baby appointment also.  Even though he had a runny/snotty nose for a couple of weeks, his ears checked out healthy each time.  So I think he just pulled them apart so much that the sound wasn't getting through very good.  They were whistling a lot even when in place. Finally the new earmolds arrived and they fit better, I guess, but they don't go into his ear canal very far so again, they are pretty easy for Isaac to just pull out.  He's also getting very good at shaking his head and waving his hands around so much that even with two of us trying to keep them in his ears, we have to give up at times.  We're doing what we can, but it's a very difficult battle to keep up with this month.  He's probably spent more time without them then with them.  We made new molds last week to try to get a better fit (again). 

It makes me feel confused about what his hearing limitations are. He hears without the aides. He responds to most of what is going on around him. He's not profoundly deaf so he should and does hear without aides. I don't know how well or what tones are clear or if most things are muffled. I don't know if he responds to our gestures and facial expressions or if he really hears and understands our words. When I hold the aides up to my ear, the sounds are amplified so much that there's no way I could wear them. Sometimes I wonder if it's too loud for him. I wonder if it's possible that his hearing is improving and if we are now damaging his residual hearing by stuffing the amplifiers in his ears. We pray for him. We pray for healing. We pray for understanding and patience and medical intervention... We pray for sucessful hearing assistance and speech skills. Is it possible for his hearing to improve? According to his genetic testing, the Connexin 26 mutation is known to niether improve his hearing nor progess in hearing loss. Maybe God will heal him. At this point I don't "need" him to be healed but I would like to understand his hearing loss issues better. I continue to pray for patience while he grows and develops his social and speaking skills. One of these days Isaac will be able to "tell" us what is going on in there.


We had to follow up with the Pediatrican to check his weight this month.  He gained about 14oz over the last three months but he's still pretty low on the graphs.  I guess the curve line shouldn't be going flat so we have to go in again in January.  He's getting thinner as he's getting taller but I don't think we have to worry about it much at this point. The doctor just wants to monitor him to track how much he gains within a month. I'm trying to feed him fatty foods that are healthy with lots of organic whole milk.

I've completely weaned Isaac. The last time I nursed him was on Christmas night.  The reality of the end of this phase of my life makes it sort of hard to let go of.  He's only been nursing at bedtime for the last couple of weeks.  He's drinking and eating all table foods at this point so he really doesn't "need me" anymore.  boo/hoo My baby's getting big.

Isaac is cruising all over the funiture and crawling to wherever he wants to go.  He's getting taller so we have to clear the edges of table tops now too.  For Christmas he recieved a new walking toy.  It transforms from a bike into a walker.  He likes both forms but hasn't figured out how to move the bike forward yet - just backwards, a little bit. When walking with it, he gets sooo excited and giggly.  He knows he's doing something very exciting!  He's also added kissing and lip smacking while he walks.  Makes me melt with love!  He needs to figure out how to back it up after banging into the walls and getting "stuck".  I think free style walking will be coming soon.

14 months

Big family vacation cruise: Mediterranean, Barcelona, Rome, Athens, Izmir, Cairo, Alexandria, Valletta

Happy baby with social smile :-) 

Isaac is so young and yet so well traveled during this first year of his life!

13 months

first haircut

babbling: dadadada, aaahhh, gggaaa,

does waving sign, understands signs for eat, milk, more

steady progress/no "problems"

1 year old!

My baby is a year old!  As you can see, he really enjoyed his first birthday cake!  What fun!  We celebrated with a small, family party.  I love throwing big themed birthday parties but this time, I wanted to keep my focus on my birthday baby and not all the details of entertaining a big group of friends.  No regrets here.  We all enjoyed playing with Isaac, watching him open his presents, and eating his first sweets of cake and icecream.  It's official, he's 1 year old. 

A professional photographer was visiting our military base on his birthday day, so I scheduled a portrait sitting for the afternoon.  He did a great job and captured Isaac beautifully in sepia colored photos.  This created a little delemia for me though.  I just wasn't sure about what to do with his hearing aides!  I wasn't sure if I wanted them on for the pictures or not.  Camryn wears glasses and she wears them for her professional pictures but I really felt conflicted about having the hearing aides in the pictures.  In the end, we had wardrobe changes during the photo session and I didn't want him fussing and pulling the aides so I kept them off just to keep the peace between him and the photographer.  I love the pictures!  But I'm still wondering if it would have been more truthfull to have him wearing the aides.  I don't know why this was such a delimia for me, but it was and kind of still is.  I think I'll make sure he's wearing them for his two year old pictures.  Maybe I'll be more comfortable with the reality that "my baby is hard of hearing and needs to wear hearing aides."  It's our reality and I actually wish I would have celebrated this part of him right then, instead of hiding it.  Even though I wasn't hiding it. But maybe I was hiding it.  My baby isn't perfect.  But he is perfect.  (now I'm wiping my own tears...it's so confusing sometimes...)

Our favorite (and only) audiologist, Lt. Duhon, moved away this month.  I feel sad about this too. :-)  He's been with us from the begining of this journey.  He had limited experience with infant hearing tests and here came Isaac, his first patient to not pass the standard testing.  He rose to the challenge and helped pave the way for us to get Isaac diagnosed and aided.  He taught each one of us all about the hearing process, parts of the ears, how the testing worked, how to make ear molds, how to understand the audiology reports, etc.  In other words, he opened up a whole new world for us to explore.  He was patient and kind and understanding and helpful.  What more could we ask for in an audiologist and in a friend.  He's also spent time in our home to play poker with Travis and helped out in a couple of our backyard BBQ parties so we will miss him on several levels.  Our new audiologist is based out of Naples, Italy.  She'll be here for a week, every 3-4 months.  I'm not sure how well that will work for us but I guess it is what it is.  The Navy decided to not fill the current, full time audiologist position at the hospital here so this is how it will be for the next several years at least.

In speech therapy, we've decide to cut back to only once a week.  Thus far, we've seen Lisa twice a week but we decided to change the IEP to once a week.  So every Thursday from 9:00-10:00 we'll spend time with Lisa.  This is good because we're also considering weekly physical therapy for a little while.  Our physical therapist, Sherri, is concerned about Isaac having low tone issues since he's not balancing well, doesn't have good core strength and isn't walking or even pre-walking yet.  I don't think it's a big deal, but I don't think it will hurt to have a little professional help/play.  At his well baby appointment, he got his one year old shots and his weight and height checked.  He's not getting big very fast.  In fact he's dropped to 20% on his weight chart.  This means we need to try and fatten him up.  Hopefully we'll find some good table foods he'll start to like.  I'm still breastfeeding him and plan to keep that up for little while more especially since his weight isn't up right now. 

It's been a very full first year for little Isaac!  What a blessing and what a challenge we have with him in our family now.  I love you my little baby Isaac.  Happy birthday.

11th month

August 4 - new earmold ordered...arrived the 26th
August 13 - optometry appt.

August 17 - finialized hearing threshold reports and adjusted aide settings

Audiology: We started out the month with many visits in the sound room. We're trying to test the full range of pitches at different thresholds so we can put it all together for a good "reliable" report of Isaac's hearing levels. Each time we go in, Chris only tests a couple of sounds before Isaac gets too fussy to sit still or gets bored with it and won't respond to anything. From my perspective, it doesn't seem very reliable but Chris keeps telling us it's a much more reliable testing process than the sedated ABR because the ABR can only reveal limited hearing thresholds in a general scope. So the first two weeks we were pretty busy running back and forth doing this. The audiologist sits on one side of a tinted window and Isaac and I are in a darkened little room on the other side (w/o hearing aides). Sounds come out of the left or right speakers and when Isaac looks in the direction of the sound a little toy in a box lights up and flashes as a reward. Nothing too exciting but that's how it works. My job is to keep him in the right spot in the room and keep him still and quiet enough to hear and look towards the sound source. It's sad to sit with him and watch him NOT respond to obvious sounds.

We were scheduled to have the ABR test on the 19th but on the 17th, our new audiologist, Amy McCarther, flew in from Naples, Italy and during our appointment with her she determined our sound room testing to be thorough and complete so she cancelled the ABR. We were happy about this change of plans! She adjusted the hearing aides a bit to confirm they were properly set to his hearing thresholds. A week later, his new earmolds arrived. We are feeling very good about how his aides are working for him now. What a relief!

Optometry: Isaac needed a follow up appointment for his vision tests so on the 13th, we took care of this. The doctor said he looked good, had good tracking skills, good muscle coordination and his astigmatism level looked less than it did in May. This is another good report. We go back in six months.

Baby things: Isaac started creeping along the furniture this month! So cute! He gets stuck standing up so I have to help him down when he starts fussing and getting tired. The biggest problem with this arrangement is at bedtime. I'll lay him down, he'll fuss and stand up along the crib rails and then he can't get down! More than a couple of times, I've gone in several times to lay him back down before he actually falls asleep. This is creating bad habits! Two different times I listened to him cry and cry only to find him FINALLY falling asleep while standing up in the corner of his crib. Poor baby...you just need to bend your legs and lay yourself back down. I can't stand having him cry himself to sleep but I'm also at my wits end at dealing with naps and bedtime. Surely this won't last forever - will it?!

10th month

July has proven to be a very good month for us. Thank the Lord! I needed a break (from reality). It's been nice to take a breather from all the research, worry, fuss and appointments and just enjoy our baby.

I actually haven't been into the audiology suite since we received the earmolds on 6/30. Our military community is small so we've run into Chris, the audiologist, a couple of times in casual, civilian type places and touched base with him that way. His new earmolds and Eargear clips have made a big difference in the daily use of hearing aides. We've been quite happy with both. Isaac only tore them apart twice. I'm having a hard time getting the left one back to the orginial shape so I may need to ask Chris for help because it's not fitting on his ear well at all at this point.

We only met Lisa five times this month for speech therapy sessions due to summer vacations scheduled on alternate weeks. Isaac is babbling and making new sounds and blends every week. I don't think he says any distinct words yet but I'm so thrilled with what is coming out. It's so adorable! He's learned to wave hello and bye-bye and uses this sign often. He gets very excited when I sign eat and more so I know he understands those even though he isn't copying the signs.

The physical therapy that Isaac started last month only lasted 3 weeks and we decided he was making great progress, so we probably didn't need to continue into this month. Unfortunately he's still not rolling over completely and I can't figure out why but he seems happy and able to physically do everything else he wants to so I'm trying to just accept this as his own little quirky thing. What else can I do? He's crawling all over the house now and just starting to stand up with support. We've lowered his crib mattress and ordered two baby gates to protect him from his own independent, possible mishaps. Hopefully we can stay a couple of steps ahead of him during this new baby phase we're entering.

We weren't able to get into the optometrist this month but we have an appt in a couple of weeks to follow up with his vision tests. And the other good news of the month is that he's started pooping again! I've stopped the daily medicine and regularly change a dirty diaper several times a weeks now. Now that he's more regular, I realize how nice it was to not have to do this. :-) But not having to worry about it so much is a very nice change.

Well, that's about it for this months report. Next month will pick up again as we have an appointment for the second sedated ABR. This is the same testing that Isaac and I flew to America for, five months ago. Now the Navy has figured out how to get the testing equipment and a pediatric audiologist here to Spain so it will only be a one day affair. Live and learn, live and learn...

9th month

June 2: received genetic testing results from pediatrician
June 11: new ear molds arrive... too small... new ones made and ordered AGAIN
amplified both aides a little
June 15: weekly physical therapy starts to get help rolling and sitting better
June 30: new earmolds arrive (in record time) weekly audiology appts begin, to create accurate sound frequency reports

This month has been very busy with various medical appointments for Isaac. In fact, between all of his appointments, a couple of family dental appointments, and the big kids' swimming lessons, we've had little time to just sit back and relax at home this month.

Audiology: We've gone in to see Lt. Duhon every week this month. Twice we went in to get new earmolds. We had waited for over 4 weeks for the first set and by the time they arrived, they were too small. In fact, it seemed that they had a poorer fit then the previous ones. They didn't go into the ear canal as far and kept falling out just as easily. We could tell they weren't good ones immediately so we went ahead and made new molds right then. The next set arrived today and in record time of twelve working days and they now fit perfectly. Actually they are almost too difficult to put in because we've never had a such a tight fitting mold. They have a new feature called a helix stop which fits snugly under the top fold of the outer ear (in the helix). Along with these good fitting earmolds, we also received the Eargear clips we ordered several weeks ago. I feel like they'll work so much better than the roach clip style we were given originally. They hold his hearing aides close to his head and behind his ears so they don't flop out and become easy targets for his hands to just reach up and play with. Still challenging, but between both new parts, we're feeling happy and optimistic about wearing the aides daily.

Lt. Duhon wants to test his unaided hearing in the sound booths on a weekly basis so he can get some good readings on his hearing thresholds at all the different sound frequencies. At least that's my understanding of what he is doing. He would probably describe it in a more technical and more accurate way. :-) I'm taking him in on Fridays for this. Don't know how long this will last but hopefully Isaac will get used to this environment of testing to help us accurately set his hearing levels. That's the goal anyways.

Early Intervention: We have a regular routine of meeting with our speech therapist, Lisa, twice a week. She comes to our house in the mornings at 9:00 which is a great time for Isaac's schedule and it keeps me from getting too lazy and sleeping in much! One of Isaac's favorite games to play with her is when she sings simple nursery songs while moving his arms or legs. Then she'll stop singing and moving until he responds with verbal noises. Then the singing and motions continue, etc. He seems to really enjoy this. They also play games of drop the toy in the box, find the toy, listen to the sounds it makes, play with it a little, take turns, etc.

I've asked the physical therapist, Sherri, to work with Isaac this month because he doesn't seem to know how, or doesn't want to roll over from his stomach to his back and it seems to be frustrating him a lot instead of motivating him to just do it. She's not sure why he's not doing it either because he rolls from back to front just fine and he's holding his head up very nicely and he's even scooting around a lot now. She's encouraging him to build up his strength in his neck and stomach/trunk with daily exercises. I hope these activities will do the trick.

Baby things: At the well-baby check up this month, we found out the results of the genetic testing we had ordered while in Virginia. I'm not very happy with how this has all been handled because it was not presented to us in a professional or informational way at all. I just happened to mention to the pediatrician that we were still waiting for the test results and he browsed his electronic medical record and found (to his surprise) an email confirmation of the blood test. He printed it up and handed it to me. That's all there was to it. No genetic counseling, no follow up, no suggestions on what to do with the information, no recommendations on further testing for our other children, etc. So we don't have detailed information except we now know that his hearing loss IS because of a recessive genetic mutation. Meaning, Travis and I have apparently each passed on a recessive gene mutation called Connexin 26. I've been doing internet research on what this really means and will follow this post up with a post on what I'm learning. Lisa has been very helpful by collecting information and she's also trying to set up an appointment with the EDIS developmental pediatrician from her office. I'm not sure how helpful he will be but I understand he is very well informed of childhood diseases and disabilities so hopefully he'll be able to help me sort through this genetic finding.

I've been feeling a little bit paranoid over all of Isaac's little issues of not rolling, not having bowel movements, not passing normal vision tests, in addition to his hearing loss and speech therapy goals and trying to figure out if these little issues are all related to some bigger, unknown problem or if they are totally unrelated to his hearing loss. It's so tricky to figure out the unknown of each little person as they are born and developing during the first year (and beyond). One fact of this type of genetic hearing loss is that it is non syndromic, meaning it's not complicated with other physical issues. The other good thing about knowing this is that it's not a progessive hearing loss gene. We've wondered if his hearing loss will progress from moderate/severe to profound over time. These two things alone should give me peace about the other issues but I don't seem to feel comforted. It's still confusing. However, I'm very grateful for all the info we've received and all the help we are getting. Isaac is very lucky to be born in such a modern age with all the info and technology available to him.

Connexin 26

Back in March, Isaac had blood samples taken for the recommended genetic testing. This month we found out the results. He tested positive for the most common form of genetic based hearing loss, Connexin 26. This has cleared up some of the question mark areas we've been worried/wondering about but has also surprised Travis and I. We had NO IDEA either of us were carriers and now to find out that we each had a part in Isaac's hearing loss has been a bit of bad news but I guess more information, good or bad, will help us understand this disability better. Here are some snippets of information of my research on this. (I probably should have included the source references but since this isn't a formal research paper, please don't grade it as such :-)
Children born with bilateral (both ears) severe to profound sensorineural hearing losses are typically referred for genetic testing for Connexin 26 mutations. Connexin 26 mutations are genetically transmitted from parent to child in a recessive manner, which means that an affected individual must inherit one copy of the non-functioning gene from each parent. Carriers who only have one copy of the gene (i.e. one normal gene and one mutated gene) do not manifest any of the signs of the condition, but have a 1 in 2 chance of passing on the defective gene to their children (who would then also be carriers only), and a 1 in 4 chance of having an affected child if the other parent is also a carrier. Connexin 26 mutations produce a pre-lingual hearing loss, because it affects the child before they are old enough to develop speech.

Usually, mutations in the Connexin 26 gene are recessive, meaning that both the mother and the father of the baby need to have the mutation for it to cause a hearing loss in the baby. Hearing loss due to mutations of the Connexin 26 gene is almost always congenital, severe to profound, not progressive, and occurs without any other medical problems (nonsyndromic), meaning the mutation produces only isolated hearing loss. There is NO increased risk for other medical problems that are commonly associated with hearing loss such as blindness, thyroid problems, kidney problems, or balance disorders. However, there is in a minority of cases a higher incidence of skin disorders in patients with a Connexin 26 mutation.

8th month

May 6 - second eye exam follow up

May 11 - new earmolds made and ordered, hearing aides both amplified up

audiology: We went to the audiologist only once this month for some hearing aide maintenance and a first try in the sound room. The first was successful, the latter wasn't. His ears were beginning to to show signs of growing so we had new earmolds made and they were sent to the States almost three weeks ago. They "should have" been back here by now! I was assured that it wouldn't take nearly as long as the last order but if they don't come this week, it will be way past the expected delivery date. At this point his hearing aides are falling out so much that it's almost too frustrating to try to keep them in all day long. And if they aren't out completely, they're often whistling with lot's of feedback. Frustrating!

Lt. Duhon also hooked his hearing aides up to the computer to adjust the settings a bit. It's amazing to see all the info available from the mini computer chips in his aides. We were feeling like we had to talk very loud and purposefully in order for Isaac to hear us so both aides were bumped up in the high and low tones. Right away, we could see improvement in his reactions to sounds. For the first few days, he was much more aware of what was going on around him and was very observant of everything. And now he is starting to babble with consonant sounds for the first time! We're very happy about all of this. I don't think the right ear is set correctly though because he tends to respond to sounds on the left side more consistently. So, we'll talk about that at our next appointment.

One of the big goals we have for him is to be able to reliably respond to sounds in the audiology sound room. At our appointment, we attempted this kind of testing for the first time. (this was before amplifying the hearing aides) It didn't work so well because he was quite fussy and didn't look in the direction of the sounds. However, he did become alert to most of them. He would stop squirming and sit very still and sometime he would look up but didn't really look around to find the source or direction of the sounds. He usually does much better during our therapy sessions so it was kind of sad to actually see him not responding to what was going on in this environment. Travis was with us for this appointment (for the first time). I was glad he was able to witness "proof" of his hearing loss because he tests Isaac at home with clapping and such things and questions whether or not he really needs the hearing aides. I guess to a point, we both wonder about it. I've been the one with him through all the testing and diagnosis up to this point so I've seen everything he's been through and watched the tests fail, etc. He seems so normal and healthy in every other way that it's hard to accept that this teeny tiny part of his body doesn't work though. I suppose this is all part of accepting and dealing with a disability. But we can always hope and pray for healing. right?

early intervention: We continue to see Lisa, our speech therapist, twice a week. It's very encouraging to acknowledge the changes and progress that we are making by working with her so often. She often points out little improvements that she notices within just the few days in between our meetings. I get to gush about all the cute and wonderful things Isaac does and she gets just as excited and proud of it as I do. She's very good at working with my questions and worries too. She's helping me with baby massage techniques, rolling over issues, encouraging neck exercises and sitting strength, eating strategies, and all sorts of playing techniques for very purposeful playtime. It's fun every time we see her. Just last week he started babbling with yayayayaya, and mamamama! We're very happy about this milestone. The baby books say this initial babbling should begin around six months old and he started a week after 8 months so I don't think that's too far behind the expected normal time frame.

optometry: We saw the other doctor for an eye exam follow up and she diagnosed him with a level 2 astigmatism. I'm doing a little research on the internet to learn more about what this means but from what she told me, if he had a level 4 or more, he would definitely need to get glasses right now. However, at 2, we'll simply watch for possible progression with follow up exams every two month. In July we'll set another appointment. I guess his vision is okay for now but the astigmatism can affect it differently than near or far sighted vision does. I need to learn more about this to understand it better and will add more info in a different post. I know I have astigmatism mixed in with my poor eyesight but my vision is bad all around so I really don't know how this affects visions by itself.

baby things: He's starting to eat table foods and seems to prefer this much more than the pureed baby foods. I've also started teaching him to use a sippy cup. He refuses a bottle and I'm still trying to get him to drink apple juice (or prune juice) to help move his bowels so I'm hoping he'll catch onto this sippy cup idea soon. No success yet. We have a doctor appt scheduled for next week to follow up on his lack of bowel movements despite the fact that he's been on medication for this for over seven weeks now. I also want his take on why Isaac isn't rolling from stomach to back. I think this is an important milestone and he just doesn't do it at all so it makes me worry!

astigmatism?

Definition: Astigmatism usually occurs when the front surface of the eye, the cornea, has an irregular curvature. Astigmatism is one of a group of eye conditions known as refractive errors. Refractive errors cause a disturbance in the way that light rays are focused within the eye. Astigmatism often occurs with nearsightedness and farsightedness, conditions also resulting from refractive errors. Astigmatism is not a disease nor does it mean that you have "bad eyes." It simply means that you have a variation or disturbance in the shape of your cornea.

This may result in vision that is much like looking into a distorted, wavy mirror. The distortion results because of an inability of the eye to focus light rays to a point. If the corneal surface has a high degree of variation in its curvature, light refraction may be impaired to the degree that corrective lenses are needed to help focus light rays better. At any time, only a small proportion of the rays are focused and the remainder are not, so that the image formed is always blurred.Usually, astigmatism causes blurred vision at all distances. Some people with very high degrees of astigmatism may have cornea problems such as keratoconus.

Astigmatism is very common. Some experts believe that almost everyone has a degree of astigmatism, often from birth, which may remain the same throughout life. The exact reason for differences in corneal shape remains unknown, but the tendency to develop astigmatism is inherited. For that reason, some people are more prone to develop astigmatism than others.

Treatment: If the degree of astigmatism is slight and no other problems of refraction, such as nearsightedness or farsightedness, are present, corrective lenses may not be needed. If the degree of astigmatism is great enough to cause eyestrain, headache, or distortion of vision, prescription lenses will be needed for clear and comfortable vision.

Astigmatism may increase slowly. Regular eye care can help to insure that proper vision is maintained. You may have to adjust to wearing eyeglasses or contact lenses if you do not wear them now. Other than that, astigmatism probably will not significantly affect your lifestyle at all.

7th month

April 16 - new ear molds arrive and fitted for 1st time wearing both aides (30 weeks)

April 21 - Early Intervention therapy begins 2 sessions/week (31 weeks)

April 24 - routine baby eye exam with negative acuity results

audiology: April has been a very productive month but quite frustrating at the same time. After waiting more than 4 weeks, the ear molds that were taken and ordered last month, from Virginia, finally arrived at the Rota Naval hospital. The audiologist was very good at keeping us informed on the status of the delivery and promptly called us when he received them. Apparently, the Phonak company makes the hearing aides and subcontracts out the ear molds through Westone then they go back to Phonak who delivers them to the audiologist who then fits them on the patient.

This is my understanding of the process that delayed the delivery: Ear mold remakes were ordered by the audiologist in Virginia. Then Phonak forwarded them on to Westone. Westone made them and sent them back to Phonak. Phonak had issues with the military not prepaying for them and kept them. They were suppose to fall under the 90 day warranty due to poor fit but one of the companies (not sure which one) argued that it wasn't poor fit due to faulty manufacturing since the patient simply outgrew them. The military agreed to just pay for them as a new order but requested them to be shipped overseas ASAP as they worked out the payment issues. Apparently, it took them a couple of weeks to come to this agreement but I think they are still dealing with payment issues. Thank goodness it's all covered by our military insurance and although I had to wait it out I'm glad I'm not the one dealing with the warranty and insurance issues. (free health care is a blessing!) And finally, shipping overseas takes longer than if we were stateside. All of this combined made it a long, irritating wait.

After 4 weeks, I started feeling very frustrated for several reasons. 1) Because he had outgrown the original ear molds within 7 weeks and couldn't even use them by the time he was first fitted with hearing aides, so I was anxious about him not fitting into these again. 2) Here I was with a baby almost 7 months old who hadn't been able to hear since birth and we "knew" he couldn't hear when he was only 2 weeks old but he still wasn't aided! 3) I was frustrated with the system in general. If newborn hearing screening is becoming a routine thing nationwide, there needs to be agreements with the hearing aide companies to accommodate the fact that infants grow out of the ear molds within 4-8 weeks due to the nature of who they are: a growing baby! They shouldn't be discriminated against with extra costs and arguments because they need new ear molds more often than full grown adults. There needs to be an accommodation of warranties or something so the ear mold/hearing aide companies are prepared for multiple re-makes for the very young and rapidly growing infant hearing needs. Okay, that's my soapbox stand... I now digress.

early intervention: So he's been wearing bilateral hearing aides for two weeks now! I was hoping for a grand acknowledgement of full hearing but have realized that it doesn't work that way. He's still a baby with baby-like reflexes and responses! Early intervention started five days after his hearing aides. His therapist comes to the house twice a week and plays simple sound games with him to help him recognize sounds, locate the source and then be rewarded with happy facial expressions or hands-on touching, etc. It's fun. We're not sure if the hearing aides are set exactly correct for his hearing loss but only time will tell us after we've worked with him, he matures and has his next ABR at twelve months old. He is definitely hearing better with them and for that I'm very happy. It's just the keeping them on his ears that's most difficult. Between getting them out of his mouth, pushing them back in place, keeping his ears (the microphone parts) away from rubbing on clothes, blankets, etc., keeping finger foods off of them, and just consistently using them day after day is the challenging part for all of us!

We've also been working on his sitting and rolling over skills. He does both with support and help but needs to work on building more strength to do it better. I first declined physical therapy but the last few days he's been worrying me a bit so I think I'll have the physical therapist visit us again. He only rolls to the left and only lays his head down on the left side. When I try to get him to lay it down on the right, he bumps his face on the ground until I use both of my hands to turn his head and guide it down on the right. This may be due to the way I hold him and the way I lay him down to sleep but it could also be due to the fact that he hears better out of the right ear so he naturally hasn't been laying on it due to his hearing. Worse case is that he's doing it due to some muscular problems but my gut instinct is that it's not too serious - just one more thing to be diligent and observant about.

optometry: I was a couple weeks slow on getting Isaac to his six month well-baby check. While I was there, the doctor directed us to go over to optometry for the easy, in and out, no appointment needed, routine 6 month eye exam that they do for all babies. (my older children didn't have this so it must be a new thing) So last week, we visited the eye doctor. The test is simply a "photo shoot" of the eyes. He just had to have his eyes open and looking at the camera. Results: He didn't pass and is diagnosed with NEGATIVE ACUITY. "AHHH! Are you serious?" I ask, "what exactly does that mean?" As if that's not bad enough, the bad part is, is that this doctor is not a pediatric optometrist and doesn't have experience with infant vision problems. This is very troubling news for us and we are now in the process of finding out how to proceed. Being overseas is really causing problems and stress for me. Next week we're going back in to see the optometrist's wife who is apparently an optometrist also and is employed part time at the hospital. I'm really not sure what her experience or plan is so this new issue is looming over us... I don't know if we'll have to go back to America for this or not. If not, we'll definitely have to add it to our medical needs if we end up in Virginia again for the audiology needs at twelve months old. I'm so sad and upset over this finding. My poor baby!!! I've really felt that since his sense of hearing was bad, his other senses would be extra powerful. I know he sees! But is everything blurry for him? I just don't know what to do with this "negative acuity". I can't imagine how he'll wear glasses and hearing aides. Does he need glasses now or can he wait? How bad is it? What is causing it? Why????

baby things: Due to his constipation issues, I decided to ask the pediatrician about it and he prescribed laculose medication. I'm giving him 1/2 tsp daily at this point. The good news is that he's now pooping about twice a week now. For 5 weeks, he only pooped 3 times and that was after multiple suppositories each time! Don't know if this is symptomatic of anything bigger but it's been a concern so I've been tracking it and I guess I'll include it on my list of "Isaac issues."

A gift

Today is my birthday. A gift for myself is this new blog. For a couple of weeks now I've been considering starting a blog to document this journey that Isaac is taking us on so that I won't fill up my family blog with all of Isaac's info. I'll spend a week or two updating the last 6 months of his life and then I'll add posts as life allows me time.

Maybe I want to keep these kinds of posts seperate from my family blog because I haven't quite accepted his hearing loss as a main stream family thing. Maybe I need my own kind of therapy by sorting all of this out in writing. I don't know, it just feels better having this in it's own place for now.

Yesterday was his first full day with both hearing aides in. I was thrown off a bit by questions of "what's in his ears?" and "why does he have hearing aides?" and "how did you know he needed those?" etc. I guess I have to get comfortable with having to answear questions like that when I take him out of the house. It is different to see such a small baby with this kind of disability. I've never seen a baby wear hearing aides before my son started wearing them. Our military community is small so maybe it won't take long for most people around here to see him with aides. I'm not even close to being fluent in Spanish so when we're "in Spain" I guess I won't have to worry about comments because I can't communicate well enough in Spanish to discuss hearing loss.

Holland

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas of Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland.""Holland?!?!" you say. "What do you mean, Holland?? I signed up for Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guidebooks. And you must meet a whole new group of people you would never have met.It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around ...and you begin to notice that Holland has windmills. Holland has tulips. Holland even has Rembrandt's.But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever go away...because the loss of the dream is a very significant loss.But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special... the very lovely things... about Holland.

~by Emily Perl Kingsley. (Her response when asked to describe the experience of raising a child with a disability - to try to help people who have not shared in that unique experience to understand it. It's like Holland.)

Thanks to my beautiful, special baby, Isaac, I get to learn more about "being in Holland" than I ever thought I'd want to know. I've never even thought of visiting a place like Holland before, but now I'm getting prepared for the journey and am very curious as to what it will be like...
(Maybe we get the best of both worlds since we were initally sent to Italy for his ABR test and were actually able to experience the gondola's in Venice last month due to the appointment cancellations :-)

6th month

Mar 10 - ABR test (25 weeks)
Mar 11 - hearing aides prescribed and fitted (5 1/2 months) earmolds too small only wearing right side
Mar 17 - CAT scan and genetic testing/blood draw and new earmolds made/ordered
Mar 26 - Early Intervention registration begins

I'm back home in Spain now. I ran into a few bumps on the way home like missing a flight in Madrid due to the delayed departure from Philly resulting in an extra 5 hour layover before I could get to Jerez... After spending an hour to report a missing suitcase (1 of 2), I was walked over to a closet where it was waiting from the original flight arrival. BUT, Isaac was just wonderful and slept through most of the travels and my lovely family was waiting with open arms when we finally finished our travels. What a trip! I ended up staying an extra week (so 2 weeks in all) but we had all the tests done and a diagnosis and treatment/intervention started. It was a very productive journey.

He had the ABR test and our concerns have been confirmed. He has moderate hearing loss in the right ear and moderately severe loss in the left. I was given some literature on being a parent of a child with hearing loss. Here is a little blurb on his diagnosis:

Right ear: moderate hearing loss -- Without amplification, 50-100% of speech sounds may be missed which may effect speech development unless optimally amplified. Proper amplification should enable listener to hear and discriminate all sounds.

Left ear: moderately severe -- Conversation cannot be understood, unless the intensity is very loud. Age of amplification, consistency of use and intervention will determine speech intelligibility and /or language development.

Now we can deal with the reality of Isaac's life and what he needs. Before we left for the U.S. we had earmolds made up and the hearing aides ordered, to be ready for him if necessary. (the audiologist obviously anticipated the test results to be positive). So the day after his ABR test, we went in to get the hearing aides fitted and set up for him. The problem is that he's growing at a rapid speed and has already outgrown the earmolds. They don't work well if not perfectly fitting into his ear because it causes too much interference and backgroud noise. New earmolds were made and will be mailed to Spain within a week or so.

Travis and I are both feeling a little conflicted about how to feel. We're so glad to know now but sure wish it wasn't true. This is definitely a defining shift in our family as it will affect all of us on a daily basis. Just trying to keep his hearing aides in his ears this last week is not working out very well because they don't even fit correctly at this point - very challenging!

The next week he had a CAT Scan to get a good picture of his ear bone structure. This was difficult for Isaac because they didn't end up sedating him completely. Instead they gave him oral medicine to induce sleep. They had to lay him on his stomach and strap his head down to the bed for the scan and he kept waking up and squirming and crying and kicking his feet... He hates being on his stomach and I felt awful for him. After a second dose of the sleeping med, he calmed down enough to get the test done. Then in PACU, as he recovered, they needed to get 3 big viles of blood samples for some genetic testing and they were having trouble getting enough blood from his wrist so then they tried his ankle area without any success and finally got it all from his inner/upper thigh area. We were both in tears by the time that was done. Needless to say, I didn't like that day. Two days later, we were back in the Doctor's office for the test results and everything looks great and normal - no problems! I'm now wondering WHY is he hard of hearing in both ears if everything is anatomically correct and perfectly formed. (I didn't think about asking that question at the time.) It just seems odd that he can hear when everything is amplified up with the hearing aides but he can't hear without them even though his ears are perfectly formed - just not performing right. I guess I need to do more research on how sound travels through the ears and brain to get a better grasp on how ears work.

Our next plan of action is this: We are waiting for the new ear molds to arrive and then we'll get them fitted and hooked up to his hearing aides so we can start using them full time. I'm looking forward to giving Isaac this gift of hearing from both ears for the first time in his life. :-) Also, on the 31st he has an appointment with the on-base Early Intervention Department to get him set up for their therapy programs.It sure makes me appreciate the gift of hearing that we all take for granted because it's something we will have to diligently manage for Isaac. To clarify what the audiologist told me, he is not deaf, rather hard of hearing. To be deaf, you have hearing ability at 70 decibels or more. His hearing is 50 decibels in the right and 65 in the left. We will have to repeat the ABR test a couple more times over the next couple of years to see if his hearing loss is maintaining or increasing as he grows and matures.

5th month

2/14 UPDATE: Friday, one hour before close of business, the beginning of a three day holiday weekend, and four days before we take off, we received the news that our Italy doctor appointments have been canceled and our travel plans have been pulled! The pediatric audiologist went into labor herself, (4 weeks early) so now she's on maternity leave for the next 10 weeks or so! After much frustration and a few tears, we've decided to buy two more plane tickets for Travis and me to join the kids tickets (that we bought as nonrefundable tickets) and take a big family vacation to Italy for10 days. Travis already has the days off arranged and it's a vacation spot we want to tour while we're in Europe so we're just going to make the best of the time and the money already spent on the trip. So, no medical diagnosis for Isaac this month! It will probably take 3-4 weeks for new medical plans to work out for his hearing tests. Who knows where they will send us now. We had ear molds made and hearing aides pre-ordered so we can be as well prepared as possible and make the best use of our time with "the professionals".

2/28 UPDATE: Isaac has new doctor appointments set for the 9th, 10th and 11th in Portsmouth, Virginia. Travis and I have had to make some difficult decisions the last couple of days and we've decided that I will take Isaac to VA myself and he will stay here in Spain with the kids. Of all the weeks for me to leave my homeschool kids this will be a great one. Camryn will be at the public school for the yearly standardized testing every day next week and Sloan can easily join her class for the entire week too. Ethan will continue his regular public school schedule. That leaves Travis with approved flex hours at work so he can get the kids off to school each morning and be back home for the afternoon bus stop. Sounds easy, right? Isaac and I will do our best to get from point A to point B without "too many" problems. I'm just waiting for the military to get my plane tickets set up and looking forward to spending the week in English speaking USA . It will definitely be out of my comfort zone fly internationally, get back and forth from hotel to hospital all week, and deal with all the medical appointments by myself! I'll have to dig down to pull out "the confident and independent woman" that's been hiding since we moved overseas. Eeek! I hope I don't get lost in the Madrid airport trying to find my connections! I wish I knew Spanish better. I'll have plenty to do to keep me busy and I'm actually kind of looking forward to daily hotel room service and some quiet time to myself (with the baby of course). I'll just focus on one step at a time instead of dealing with the whole ordeal...

4th month

Jan 6th - failed 3rd test with new testing equipment (16 weeks)

The new audiology equipment arrived a couple weeks ago so we went in for the third time and again, Isaac failed the hearing tests. He's now been officially referred to the next level and needs to be medevaced out of Spain for a sedated brain test. The audiologist showed me a detailed poster of the middle and inner ear and explained that from what he's tested, the middle ear is intact so the possible hearing loss is probably due to the inner ear, cochlea, connecting nerve, or in the brain. He seemed very concerned and apologetic for what he predicted to be the problem. When asked if I had any experience with hearing loss or deafness, I explained that my first cousin, Craig, was born profoundly deaf. Although I didn't have too much interaction with him as we were growing up, our families went camping together every summer so I know he wore hearing aides, lived with a host family while attending a deaf school during the school year and I had seen his family signing with him. Now as an adult, I understand that he is married to a woman who is also deaf with children of their own and doing very well in life. That's very vague but that's all I can relate to in the deaf culture. Travis doesn't have any deaf family history on his side that he knows of. Maybe I'm totally naive to what this testing might reveal but I think if Isaac gets hearing aides, he'll be okay. I don't know. I think I'm more nervous about where we need to go to get the diagnosis and how we'll work out the details of getting where we need to be, etc.

The Navy has an audiologist in Italy who has previous experience with pediatric audiology and the hospital in Naples has the facilities to perform the ABR test so in about two weeks, we are heading over there. They'll be doing an auditory brainstem response (ABR) test. We just received our flight itinerary yesterday and are now planning out our "trip". Since we'll be in Italy, at the Naval Hospital, we were able to extend our time a few days so we can do some sightseeing. We've decided to take the whole family since Travis and I both want/need to be with him and we will be away longer than we are comfortable leaving our 3 older children with someone else. I wish we were going under better circumstances though. Prayers for my baby's hearing, testing and future are welcomed and encouraged. We are trusting the Lord in this and resting in the fact that He won't give us more than we can handle. In fact, we are grateful to have this early testing and diagnosis at the beginning of his life.

I've started looking around on the internet for information on infant hearing loss and have found that if we can get him diagnosed and fitted for hearing aides (if necessary) before 6 month of age, it shouldn't be too difficult to catch him up to the milestones of normal hearing children.