Tuesday, May 31, 2011

First Trip to the Pool

  Today we took E to the YMCA to play in the pool for the first time. He played in the ocean when he was three months old and seemed to like it, so we were excited to see what he would think of the pool. He  loved it! Our local Y has an outdoor fun pool that is very shallow with fountains and other water features. It was perfect for little E. He played in the fountains, took a few trips through the water falls, and even a couple of supervised dunks. We played inside in the big people pool as well. My hopes for E turning out to be a little water baby are looking good so far!




video

  The bump from the other day didn't turn into a nasty bruise as we had feared, so we're good to go for party time this weekend! He ended up with a teeny scratch that is only noticeable if you know to look for it :-)


Monday, May 30, 2011

Bumps and Bruises

  Well, we have officially entered the bumps and bruises stage. E got his first cruising injury today. He is getting really great at moving and grooving, but he lost his footing this morning and landed on the edge of the TV cabinet. The result was only a tiny scratch, but it is right in the outer corner of his eye. This really scared my husband and me because of how close he came to hitting his little eye. We hope the scratch will be all, but chances are good he will develop some lovely bruising with it....just in time for his birthday pictures. I guess it's a good thing mommy is a graphic artist and can work some Photoshop magic! I am also not above dabbing a touch of concealer on my baby ;-)  We know that this is just the first of many to come, but those little sniffles and quivering lip are going to break our hearts every time.

Saturday, May 28, 2011

Where's That Paci?!

  I was a little concerned that my son suddenly began showing interest in a paci. He doesn't want to sleep with it, he just wants to chew and suck on it during the day. I chalked it up to teething. He now has three teeth and an unfortunate new habit. He likes to GRIND his teeth! He does this while he is awake, but not while sleeping. OH it makes my SKIN CRAWL!!! I find myself frantically searching for the paci so he will chew on that instead of grinding his little teeth. Anyone else have any experience with this? How do you stop a baby from grinding his teeth?

Thursday, May 26, 2011

It's About Time

  I emailed the pediatric audiologist at the hospital that we are considering. She emailed me back the next day. That doesn't seem all that impressive until you consider that she was out of the country at the time and will not be back in office until next Tuesday. She emailed me not once, but twice and is going to try to work with us to get an earlier meeting time than currently scheduled. This means a great deal to me since we have had NO CONTACT with our current ENT since April. When it comes to my child, I need to feel like the people that are working with him care about our family and think of us as more than a number. I am really hoping that we may have found that type of care. I am really looking forward to meeting with this audiologist soon. I do not think I should have to constantly contact someone and remind them that they are treating my child.

  When did it become our culture to do the bare minimum? When did it become acceptable to treat people as if you are doing them some grand favor by providing them the services promised? This extends far beyond doctors and hospitals. It seems I can't even get an order of fries lately without the person acting as if I highly inconvenience them by asking them to get off their butt and do a little work. If I performed the duties of my job with the apathy that I have experienced lately, I would certainly cease to be employed. I make a point to speak to someone's manager and commend them when I receive good service. I feel it very necessary to encourage those that seem to care. The unfortunate thing is, I haven't had to do this lately.

Tuesday, May 24, 2011

Time to Consider Cochlear

  E's hearing aids are pretty much just expensive earrings. He is not showing any signs of response to sound. Our audiologist told us that it was time to start considering whether or not we were interested in a cochlear implant. For those of you who are not familiar with what a cochlear implant is or does, this link explains a bit:

http://products.cochlearamericas.com/cochlear-implants/how-nucleus-5-works

  A cochlear implant does allow a person to receive sound input. While a CI does provide a person with hearing, it is not the same as natural hearing. A CI is NOT a "cure" for hearing loss. A person with a CI is still deaf. When the processor is not in use, the person receives no sound information. Most children implanted with a CI before the age of four do acquire spoken language skills. Not all deaf people are candidates for a CI because there are various causes of hearing loss. A CI bypasses a non-functioning inner ear and relies on a properly functioning cochlea. At this time, it is believed that E would be an excellent candidate for CI.

  My husband and I now have several big decisions to make. We must decide if we want to pursue implantation for E. We must also decide if we are going to move E's care to a different hospital system. We have had both very good and very bad experiences at our current hospital. There is a hospital in our state with a very well developed and renowned pediatric audiology program. Changing would mean a great deal of paperwork, possible further delays, and a two and a half hour ONE WAY drive to the hospital. It could potentially mean much better care for E in the long run. My brain hurts from all of the swirling information and questions!

Saturday, May 21, 2011

Time for a Party!

  Thanks to my husband, we did finally manage to get E's hearing aid tube back into place. It involved needle nosed pliers and a lot of patience. E did not even fuss today when we put them in! Thanks to "Lily's Mom"for the comment left about the hearing aids stimulating the auditory nerve. It really does help to think that even if the hearing aids are not helping him to hear anything that they are at least "exercising" the nerve.

  E is about to turn ONE! I cannot believe how quickly the time has flown by! Everyone told me it would, but it seriously was just gone in a blink! I went shopping today for party supplies. We are having a beach themed party for E. I sent out some electronic invitations and printed some as well. I made the invitations myself and just took them to WalMart to be printed in the photo lab.


  We have purposely not introduced sweets like cakes or candy to E because we wanted his first big sugar adventure to be on his birthday. I can't wait to see what he thinks of it all. I am really looking forward to a messy, sugary grin. We bought his gifts today too! We got a Tonka play rug for his room and this awesome thing (that I think Daddy may be more excited about than E) :



Friday, May 20, 2011

Meetings and Evaluations

  The ball is rolling now on E's early intervention team. He has been assigned someone to come to our home once a week. She will work with E almost like a private preschool teacher geared specifically for his needs. I was thrilled to learn that she had read this blog prior to our first meeting and was already very familiar with E and with my husband and me. We were able to skip the Q and A and get right down to business mapping out our goals as a family. E also had an evaluation meeting today to assess his needs. The evaluation involved a light medical screen, questions about milestones, and play observation. The results were that E is a beautiful, healthy baby that is right on target across the board. He is 50% percentile for growth and meeting all of his developmental milestones. We were given much praise and encouragement as parents for being so very proactive and involved. It felt wonderful to feel like I got a gold star as a mommy :-)

  You know how those pats on the back go. It seems like for every one pat on the back, you get at least a dozen kicks in the butt. Well, I did something stupid. I was trying to clean E's hearing aids tonight and had been told to wash the ear molds with a mild soap and warm water. I knew that I shouldn't get moisture near the hearing aid, so I detached it from the ear mold so I could wash the ear mold without getting anything else wet. Doofus me detached the tubing from the ear mold end rather than the hearing aid end. Well, if you don't know, the tubing slides tightly through a tunnel that goes all the way through the silicone ear mold. I couldn't get the little tube back in! I got it pushed half way, but cannot for the life of me get it to push the rest of the way into the silicone tube! I gave up after a while in fear that I might damage the tube or somehow stretch or distort the ear mold. The good news is that E has another appointment with the audiologist Monday, so if he cannot wear that hearing aid, he will at least only be without it for two days. I was TRYING to be a good mommy and keep my son's hearing aids all nice and clean, but I ended up rendering one of them unwearable. Yay me. Well, lesson learned – do NOT disconnect the tube from THAT part.

  E has now worn his hearing aids for almost a week. He doesn't like having them put in, but once they are secured in place, he is a happy camper and doesn't mess with them. He goes about his merry little way completely unconcerned with his new ear accessories. Are they helping? Who knows. There is no indication that he is hearing anything. I have been told that it is a very good sign that he leaves them alone. Supposedly, if a baby seems not to mind the hearing aids or doesn't constantly try to remove them, it can indicate that the child has perceived a value in wearing them. I am hoping that we will get some information from his appointment Monday. He has to wear them for a trial period of at least three months before it can be definitively determined that they are of no use to him. I would like to believe they are doing something because I am not at all happy about the idea that I have to keep maneuvering these silicone blobs into his little ears everyday if they are not benefitting him in any way. I'm so very proud of my little guy though for putting up with it all!

Monday, May 16, 2011

Hearing Aids Are HERE

  E got his hearing aids today. We didn't get much information in the sound booth with them though because he had reached the point of just ignoring us all by the time we got around to the booth portion of the appointment. We cannot tell if they are doing anything for him. He doesn't seem to be any more reactive to sound than before, but we have been told that it might just take a little while for him to "learn to listen" to new sound information. The truly amazing thing is that he wore them all afternoon and didn't try to take them off!! We had tried to desensitize him over the past few weeks by constantly playing with his ears and it seems to have paid off. He really doesn't seem to care that he is wearing them. Of course I still use the clip to make sure that if he does finally decide to fling them, they will stay latched to his shirt. I wish he didn't have to wear these things, but he sure does look cute in them ;-) I was pleasantly surprised that they are not quite as big and cumbersome as I had expected.

Side View with "Critter Clip" Attached to Shirt

Playing With the Storage Case

  We found out today that the results of the genetic testing are negative. E's hearing loss is not genetic. This might sound like a relief, but it kind of is not. If his hearing loss is not genetic, and he passed his newborn hearing screen, it just leaves us even more confused. He was not exposed to loud noises or any environmental things to cause it and it is not genetic, so WHAT IN THE WORLD is behind it all?? There are various medical syndromes associated with hearing loss, so we may have more testing in our future to rule out other things. It's a little scary because some of these syndromes come with other medical issues. Now I have that tiny, horrible voice in the back of my head wondering if there is anything medically wrong that we do not yet know about. I really wish I could pummel that little voice into dust!

  On a totally different note, you may notice a paci in the first pic. My son has never shown interest in a paci....until now. He has started really teething and suddenly wants a paci to chew. He doesn't JUST chew it though. I have no clue what to think of this. Just at the time that many kids are weaning off the paci, mine decides to pick up the habit?? What should I do? Should I hide all the pacis or just let him work through this phase and hope he'll again find them of little interest? In the second pic, you can see the corner of the latest obsession...the blue blankie. It seems E has finally settled on his attachment item of choice. This blanket is plush on one side and satin on the other with a satin border. He adores it! I am thinking we may go and buy a duplicate and start rotating them. I figure it is always good to have a backup when your kid finds that GOTTA HAVE IT item. I was a blankie baby and I have been told many times by my Dad of  the time he had to backtrack through two states to get my blanket that had been mistakenly left behind. Come to think of it....maybe we just need to have about 10 of these things around!!

Saturday, May 14, 2011

Shark Diving

   Way back before we found out about E's hearing issues, my husband and I had booked a trip for our five year anniversary. We considered canceling the trip many times because we weren't sure it was a good time to leave E for the first time or to spend any money. We knew we couldn't get a full refund and as the time grew closer, we realized that we needed this vacation now more than EVER. My parents drove up to keep E for the week while my wonderful husband and I set off for our dive vacation in the Bahamas :-)

View from our room at Sandals Royal Bahamian

  I found the ONE PLACE that my mind isn't filled with thoughts of hospitals, audiograms, and worry: at the bottom of the ocean. We have been divers for about three years now. Swimming among the coral is by far the most at peace I have ever found myself. One of the first things we did when we found out that E was deaf was to find that silver lining and say, "Well, you don't need to hear to dive and he'll be one up on everyone else by being able to use sign under water!" I hope our little man is as much of a water lover as his mom and dad.

  We saw plenty of amazing things during our dives, but one of my favorites was a juvenile sea turtle that was very friendly. It stuck around quite a while to swim with us and pose for the camera. For my anniversary and Mothers Day present, my WONDERFUL husband decided we should go on a shark dive! I was SO EXCITED! I have been wanting to go to Belize to dive with nurse sharks from the moment I became certified. Obviously, we haven't made it to Belize yet, but we did get the opportunity to dive with reef sharks :-) I thought I would be really nervous, but as soon as I stepped into the water, I was overcome by their beauty and grace. They were very curious about us goofy looking fish swimming beside them, but otherwise unconcerned with us. An added bonus of swimming with the sharks was the amazing wreckage perched perfectly along the floor. I guess it is kind of funny that when I relax, it involves swimming around with 20-30 massive sharks, but it was HEAVEN for me!

Our little turtle friend

 Hubby cheesin' with Gary the Grouper

Exploring a wreckage

Posing for a pic with the sharks

  We love meeting people when we are on vacation. We were very excited to meet a great couple to spend time with during the week. They also happened to be divers and joined us on the shark dive as well. It was a blast to get to know them and hang out for dinner and just to chat on the beach at night. While talking with our new friends one day, we were overheard by a man nearby when we mentioned that our son is deaf. He excitedly piped up to tell us that his son is deaf too. Of course this was an instant connection. His five year old son has bilateral CIs and will be attending mainstream kindergarten. After a really great conversation, we exchanged information and will be keeping in touch. He very kindly offered to assist us with the journey ahead (state law, insurance info, IEPs, etc, etc). I really just couldn't get over how amazing it was to meet this man while just hanging out at the hot tub in paradise. It was as if God reached down, hugged me and whispered, "You are NEVER alone."

  I am SO glad we decided to go ahead and take our trip. I am SO in love with my amazing, shark-diving hubby! I was SO excited to get back home to my fantastic little boy who greeted us with the greatest snuggles and giggles. In short, it was a wonderful trip and hopefully refueled my tank to take on life with renewed strength.

Thursday, May 5, 2011

My Second Job

  I am a full time working mom. I have a new job though. I am also a full time advocate for my child. I feel like I am constantly chasing down answers for E. The paperwork for E to the state and for programs like Beginnings somehow fell through the cracks. Fortunately, I took it upon myself to call and inquire as to why we had not yet been contacted. Thank goodness I did! Apparently, our paperwork got lost somewhere in fax land. I also have had to call the hospital and try to track down results for testing done three weeks ago. I have names and numbers scribbled all over the place. You know how it goes...you call person A who tells you to call person B who says they'll relay the information to person C and person C will tell person D to give you a call back. I cannot help but wonder about the children out there with parents that do not have the access or the knowledge to doggedly pursue the information. Is it supposed to be this frustrating? Is it supposed to be this much of a hassle? This is only the beginning!
 
   There are days that I just don't know how I am supposed to do it all. How am I supposed to be a great mom, a good employee, a loving wife, AND keep this house clean? Oh, and throw in there being some kind of private investigator / super sleuth tracking down everything my son needs! At the end of the day, when my sweet baby is snoozing peacefully in his crib, I sit down with my husband and silently dread the energy it is going to take to brush my teeth and change before climbing into the bed. What does that say? Seriously? I'm too tired to want to brush my teeth?! Don't worry, I still brush them :-)

Tuesday, May 3, 2011

11 Months

  My sweet boy is 11 months old! Where did the time go? I cannot believe it has been almost a year since I first kissed that sweet little face. Here is my super happy baby again posing with his "month monkey". I told you that they just keep getting cuter!

Monday, May 2, 2011

Vote for E!!!

  On a whim, we entered E's pic in the Parents Magazine cover photo contest. I got this email today:

Please got to http://photos.parents.com/category/vote/photo/834835 and vote for my cutie pie! He is eleven months old today! $250 would be a great birthday gift ;-)

Set Your DVR

  You know how you buy a new car that you thought was so unique and then suddenly you see that same care EVERYWHERE? I guess having our lives changed by E's hearing loss is working kind of the same way. We have suddenly noticed hearing aids, cochlear implants, and signing everywhere. This of course is a good thing! Did you ever notice that there are random ASL signs thrown in on the show "Blue's Clues"? I don't know why they pepper them in the way they do and they are few and far between, but they are definitely there. I happened to catch an advertisement yesterday for a new drama on ABC Family. The show is called, "Switched at Birth" and features a story about two teenagers that were switched as babies and their parents find out when they are teens. The interesting thing is that one of the teens is deaf. I will be setting the DVR to catch this one because I am VERY curious to see how the show approaches this. With the popularity of Marlee Matlin and shows such as "Switched at Birth", I am hopeful that we will begin to see many more deaf or hard of hearing actors and actresses. I don't know why I didn't already know this, but I just recently learned that the HULK, Lou Ferrigno is hard of hearing. Maybe this is common knowledge and I've just been under a rock?

  E has added a new sign to his list. He has understood "play" for a while, but just recently started signing it himself. There are a few others that he tries to do, but does not yet have the finger dexterity to accomplish. If you show him the "I love you" sign, he will stare at your hand, stare at his own little hand, then flash a smile and hold his hand out toward you as if he is certain he is telling you the same thing. E has definitely locked in on the idea that we talk with our hands. He studies his hands constantly and will stop everything to watch intently if you are trying to sign to him. I love watching the wheels turn as he figures out each new sign and the way he claps for himself when he has mastered a new task :-)