Thursday, March 31, 2011

Baby's First Sign!!!

  After the horrible day we had yesterday, this was such a wonderful and much needed lift! E understands the sign for "play", but cannot do it. He can do the sign for "milk", but we are not yet sure he associates it. This is the first sign he has done that we know for sure he understands and associates. I am so very proud of my little man for picking this up so quickly! * Please excuse my Clemson pajama pants in the video lol
video

Wednesday, March 30, 2011

TERRIBLE Day

  This is certainly going down as my husband's worst birthday ever. We did not schedule the procedure today on purpose. We do not get much say in the scheduling of these things. We were supposed to have the sedated ABR test today. It was supposed to be a pretty easy little test where E would be put to sleep and then they would take about an hour to record brain activity. Easy peasy, right? WRONG!

  My little guy was such a trooper. He had not had anything to eat for six hours, he was due for a nap, and he was still a happy little ball of sunshine. He laughed and played with all the doctors and nurses. He smiled and looked curiously at them as they applied tourniquets and poked around looking for veins. He even let them hold him down on the table to start the IV with no fussing. Then, they poked him. That's when my heart broke. He stopped crying and I thought they were done. They weren't done. They didn't get  it. They tried again. They tried a third time. They called in an anesthesiology resident. He didn't get it. They called in the transport team (the folks who have to be awesome because they're doing IVs in the back of a bumpy ambulance in emergency situations). The transport team didn't get it either. They called the nurse called, "the best 'stick' in the hospital." She failed too. I was standing outside the room in the hall. I could not take it at all. I could not watch them poke and prod my screaming little boy. As soon as I saw them fail yet again, I would rush in and pick him up and snuggle and cuddle him. His dad was having to be the bad guy and help hold him down each attempt. I chose not to be around when they were doing that so that when I got to hold him, he felt like there was SOMEWHERE safe. We were both a wreck. I apparently looked like enough of a distraught mess that the janitor even came up to hug me and said she would be praying for me.

  They tried seven times to start the IV. They even tried twice in his scalp. They said we were in that catch-22 situation where he wasn't allowed to have food 6 hours prior and no liquids 4 hours prior. His veins were just not dilated enough. They decided to stop for the day and try again with an anesthesiologist that could administer gas sedation. He was on vacation at the moment. Apparently, in this BIG hospital with a GIANT pediatric unit that is supposed to be so prestigious, there is only one guy that can do this. We now have to wait until he can see us which will be no earlier than April 8th. No, that doesn't mean we go back on the 8th, it means that is when he will be back from his vacation. Who knows at that point how backed up he will be and when he can finally get around to us. The audiologists said they will be really pressing him to see us though since time lost in this situation can be a big deal.

  Once we were back home, E was happily playing like nothing ever happened. He will have some lovely bruises and I will be afraid to take him out in public for fear that people will call DSS. Don't forget the lovely purple one already developing right on his forehead from where they tried that one! Tad and I are tired. We are emotionally and physically tired. We are hurt, confused, and frustrated. If you are reading this and are upset that we didn't call you directly on the phone, please understand that we are all used up at the moment and do not wish to talk. We are also quite angry and cannot bring ourselves to muster up any sugar or spice, so it is probably best that we just keep to ourselves until the clouds clear. Thank you all in advance for your continued prayers, support, and understanding.

  Oh...and just so you know...we have decided to have "mulligan" birthday since this one turned out so incredibly nasty. We have decided to reschedule my husband's birthday for next week.

Monday, March 28, 2011

Yay for "Tom & Jerry"!

  E has an appointment Wednesday for his sedated testing. We should hopefully have much more information after this test. We were told that E cannot have anything to eat 6 hours prior to the procedure. He can have clear liquids until 4 hours prior. SERIOUSLY?! He is going to be one SUPER hungry baby!!! I am not at all happy with the idea of having to sedate my little guy, but I know that it is the only way to get the most accurate information.

  We went to South Carolina this past weekend to spend time with our family and celebrate the 40th wedding anniversary of my husband's parents. E was fabulous. He was such a wonderful baby all weekend. He charmed everyone as usual. He flirted with the hostess at Olive Garden and completely stole her heart. He was every bit the star wherever we went :-)

  We took the opportunity during our traveling time in the car to study up a bit on ASL as well as deaf and HOH (hard of hearing) culture. There is much more to learning ASL than just the signs. I do not yet know how E will be medically classified. When I try to explain our situation to others, I would typically say that E has been diagnosed with "hearing impairment".  You should know that it is not a term that is well received within the Deaf and HOH community. The reason I used it is that it is hard to convey the proper connotations to a hearing person when you say "deaf" or "hard of hearing". People hear the word, "deaf" and think that someone is totally absent of hearing. This is not true. Many deaf people do hear sound. The level, tone, and understanding of that sound varies, but they do register sounds. "Hard of hearing" seems to make people think of an elderly person that hears, but just needs to turn up the volume on the TV. This is also a common misconception. When I tell people that my son has "significant hearing loss," they ask me when he lost it. This term does not mean that he used to hear fine and now he does not. He did not necessary have hearing and then LOSE it, but rather may have never had it. I have started reading a few blogs written by other parents of children with hearing loss. We are certainly becoming much more informed both medically and culturally. I have always tried to be very aware and informed, but have been surprised already at just how much I did not know or understand.

  Check out this link that includes several good blog posts written from an HOH perspective. I especially love the one titled, "It's Clarity, not Volume that Matters."
http://www.ehwhathuh.com/2011/03/communicating-with-deaf-hard-of-hearing.html?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+EhWhatHuh+%28Eh%3F+What%3F+Huh%3F%29&utm_content=Bloglines

  In trying to take a closer look at cartoons from my son's perspective, I have been surprised to find that sometimes, it really is the oldies that are the goodies. "Tom & Jerry" is fantastic! In the older episodes on Boomerang network, Tom and Jerry do not talk. Everything is conveyed through movement, facial expression, and context. Music plays in the background, but there is no need to hear the music or to read captions to follow the story line. It is quite perfect in its simplicity! Muppets on the other hand are really frustrating. With facial expressions that do not change and "mouths" that do nothing but open and close, they are quite useless without sound. Just for kicks, take about 10 minutes and flip through the channels with your TV on mute. Are you surprised to find what shows are still interesting and which ones totally lose your interest?

Friday, March 25, 2011

Trying to Drink From a Fire Hose

  Trying to learn and think and change so quickly is as the saying goes, "trying to take a sip of water from a fire hose." Last night, my husband and I put our son to sleep and then sat on the couch together in silence like two slugs. "I don't want to think anymore today," I said to him. He responded with a nod and a, "same here." The great thing about the internet is the access to so much information. The bad thing about the internet is trying to filter and fish through the information to find quality stuff.
 
  Raising a baby is difficult enough without the added challenges of hearing impairment. You have to look at everything in a whole new way. Which TV shows are still fun for him without sound? Which of his toys are more visual and tactile? How do you make him "listen" to you when he refuses to look at you? A hearing child can ignore you, but they will still hear what you are saying to them. They may just choose not to act on the command. My child can choose not to look at me and I have no way of delivering the command at all. Do you know how difficult it is to make a child look at you when they are clearly focused on something else? It can be all but impossible!

  If you know me well, you know that I am an action person. I have to be DOING something all the time. It makes me feel like I have control of something. My action item today is making our own ASL flashcards. I want my son to have personalize flash cards. I am taking photos of things in his own environment for the fronts of the cards. For example, the Mommy card will have a picture of me rather than a random cartoon adult. These cards are honestly probably more for us than for him, but it makes me feel useful.

  Are you curious about ASL? Would you like to learn a few signs yourself? It will make my heart smile to watch those that love my child make an effort to communicate with him using signs. Check out this website for video instruction of some basic signs:
http://www.aslpro.com/cgi-bin/aslpro/aslpro.cgi

Please feel free to leave comments with any information, websites, etc that you think may be helpful or interesting to us!

Thursday, March 24, 2011

A Place to Start

  Today, we took E to the pediatric audiologist. Based on testing in a sound booth and response monitoring, we have been told that tentatively, he is classified as having severe to profound hearing loss. E seemed to be responding to sounds at about 60 to 70 db. We were hopeful and excited to see that he was indeed responding to sound. We did not realize how "profound" the sound levels were. It was explained to us that "normal" hearing would show response at 10 to 20 db. 70 db equates to very loud talking or a standard vacuum cleaner. On the bright side, he is not completely absent of hearing.
 
  Our next step is to take E for another appointment at which point he will be sedated and tests will be administered that will better pinpoint his exact threshold as well as collect data specific to each ear. This test will measure the brain stem response to audio stimuli. He will meet with audiologists, ENT doctors, and speech pathologists. After testing is complete, he will very likely be fitted with hearing aids.
 
  At the urging of the audiologists, we are beginning a new chapter as a family and we will be learning ASL (American Sign Language). My husband is happy because he was able to immediately go and purchase multiple books to study. He feels secure in knowing that we can now begin collecting information and taking action. The audiologists spoke today of everything from speech therapy to cochlear implants. We do not know if his path will involve cochlear implants or if this was just an idea that they threw out there just in preparation since we do not yet know the full extent of the issue.

  We have to keep reminding ourselves that this is only upsetting and strange to us. To E, it is normal. He is as happy as ever. He thought today was fun. He got to play with many new toys and there were four people focused on him at all times. We are doing the only thing we can...redefining "normal".