I haven't taken any pictures in the last couple of days. So, I thought I'd share an oldie, but a goodie. This is my sweet, little 5 month old Nater Tot. This is still his favorite lounging position and we know he is feeling ok, when he lays back with his arms behind his head. Man, I love this kid!
We had Nate's appointment with the audiologist on Tuesday and our fear was confirmed. The chemotherapy that Nate has recieved has permanently damaged his hearing. Nate has significant high frequency hearing loss. Some high frequency sounds are, "s", "th" and "p". Left untreated, this will absolutely affect his speech and learning. The doctor said that he will probably be a good candidate for hearing aides. This will all be addressed when Nate has completed more of his treatment and is a little more stable. Right now, he said we could help him by keeping background noise to a minimum. Turn off the TV and music, if we are not directly watching TV or listening to music. No background noise for background noise sake...it makes it hard for Nate to hear.
We knew this would probably happen, but I am finding myself far more sad about it then I thought I would be. A small hearing loss, seems like a small price to pay for Nate's life, but I don't want my son to have to pay any price for his life. The doctor, who was a very nice man, seemed so sad to give me this news. I was instantly taken back to watching my babies have their hearing tests when they were first born. They would take my brand new, tiny baby and strap a big black contraption to their head. I held my breath as I waited for the results...your baby can hear. I just want nothing but the best for my kids. I don't want Nate to have to deal with hearing aides the rest of his life...but now, it is his reality. God help the first child who makes fun of Nate for wearing hearing aides. They will get the wrath of his mother! Oh yes...I WILL be that mom if I have too.
I close my eyes and picture Nate as a big, tall man. The only evidence of the war he is waging right now...the scars on his chest and the hearing aides in his ears. I try to think of the hearing aides as a blessing that he will be able to use them to talk to people about childhood cancer and how he had to fight for his life at 2 years old. Cancer has already taken so much from us...but we have gained awareness and perspective like I never knew was possible.
There is not much time to mourn the loss of Nate's hearing. I let myself cry about it yesterday...then, put it away. We have to get back to fattening this boy up for transplant. Nate went to Tracy's house today while I worked and he nibbled all day long...and kept it down! Really, I think he ate more today then he has eaten all month. It seems that maybe the new combination of drugs is working. I pray that his eating grows exponentially from here and we can see some real weight gain on this kid!
It is a really good thing they caught the hearing loss now. Mine wasn't caught for 2 and a half years because I was smart and quickly adapted to reading lips, and my speech is impaired because of that. Please don't be discouraged by this. And you go, mama bear, for wanting to take down anybody who makes fun of him. There is just no excuse for ignorance in this day and age. It is the 21st century! Wake up, world! Hugs and prayers! XOXO
ReplyDeleteP.S. I just LOVE that picture of Nate!
ReplyDeleteI agree that it's a blessing the hearing loss was found now. As a speech-language pathologist, I know the effects of a loss going untreated until school-age. It's a difficult road. God's blessings to you and your family. (I love the picture too!)
ReplyDeleteI can't imagine what you are going through. Your strength inspires me. Try to remember that technology (and medicine)advance everyday. Who knows what hearing aids will look like even 5 years from now.
ReplyDeleteBest of luck. Our little girl was also diagnosed with high frequency hearing loss as a result of two birth defects she was born with. She's two now and we haven't started "treatment", but she's speaking GREAT so I assume that she's hearing ok too. I hope that it goes as smooth as possible for Nate. I had to put glasses on my her at 18 months and she has learned to LOVE them (actually did from the start). I find that when the child realizes how much better they see (or hear) with help, they are more willing to get that help. Though I also completely flair up inside when I see kids poke fun, or even just ask non-ill intended questions. But my little girl handles it a lot better than I do. However, parents are usually the most vocal. I have been asked SOOO many times "how did you know she needed glasses so young?" They get so uncomfortable when I say she was born with some birth defects. But I totally understand how upset you were to hear he may need hearing aids. My daughter went through a lot when she was born and I cried the most about the glasses, which was really the most minor thing she needed. I think it's easier to let ourselves go with the minor things than the major stuff that we have to stay strong for.
ReplyDeleteYou are all doing awesome and I'm thrilled to hear he's eating better and while there are still struggles to come NED is a huge thing to celebrate!!!
A beautiful picture. Thinking of Nate and his loving family all the time.
ReplyDeleteI'm so sorry about Nate's hearing loss. As a mom I understand how you want nothing but the absolute best for your kids. Just think of the hearing aids as another "chick magnet" just like his scar will be ... the ladies are gonna love this! My uncle lost his hearing completely at a very young age due to a medication he was given as an infant. My Grandma was very much a mama bear, just like you will be for Nate, and she went on to do amazing things for the deaf community. And my uncle is most definitely a chick magnet! :-) Glad to hear Nate is starting to feel better and is eating again. Hang in there ... thinking of you all every day!
ReplyDeleteWell, there certainly is not a dull moment for you, is there? This is such a touching post, Bethany (they all are, really) For what it's worth, there is a girl at Reyna's school who wears hearing aids. Whether it's how the school has handled it, the parents, teachers...I don't know...but this little girl is a ROCK STAR to those kids. We took a sign language class at the school, sponsored by the little girl's mom and SO many people came to learn sign language so they could better communicate with her. It was amazing. I pray this same type of support and rock star status for Nate when you cross those bridges.
ReplyDeleteI heard about you from Tracy and have been following your blog since the beginning. Your family is always in our thoughts and prayers. I have a little boy who is 2 1/2 and he was born with hearing loss..the same that Nate now has. We were devastated when we found out he had hearing loss and he would have it for life. After a few days and lots of tears later, we realized that we still have a wonderful little boy and this wasn't going to "hurt" our family. We ended up finding Desert Voices..a school for hearing impaired children at Shea and the 51 and he started speech therapy at 7 months. I can't say enough about how wonderful the staff has been at DV and the wonderful people we have met.
ReplyDeleteIt's amazing how far hearing aids have come and we actually have Oticon Safari ones in blue. You can decorate them with stickers, do all kinds of colors for the ear molds and even get some Ear Gear to cover the hearing aids and change the color of them. My son actually likes wearing his hearing aids!
The first time we went out with our son and he had his hearing aids in, I came home in tears because someone asked what they were. We have had some interesting comments about his hearing aids but we just say they are to help him hear, just like glasses help people see. Now we don't care what people say, we think they are cool ;o)
I know I can't relate to everything you are going thru but I can relate to having a child with hearing loss and I just want you to know that if you need anything, I would be here.
Tasha
I'm so sad to hear about his hearing loss but I have to say that if his hearing is the small price to pay for his life, then as a new mom I think I'd take it. I've read too many blogs of parents losing their children so young. They can do soooo much now for the hearing impaired its amazing. Kids have so much resilience too. Don't let it get you down. This is just a small bump in the road! Praying for you and your family.
ReplyDeleteI'm sorry to hear about Nate's hearing loss. But... He's SuperNate!! This is just one more little bump in the road that he'll overcome like the little superhero he is!! Stay strong and I'll help you kick the butt of that first child that makes fun of him! :)
ReplyDeleteHi, I am so sorry to hear that Nate is having some tough days. I work with kids with cancer (right now three with Neuroblastoma) and wanted to recomend the DVD "Paul and the Dragon" for Nate
ReplyDeletehttps://acco.org/Information/Resources/PaulandtheDragonDVD.aspx
Not only does Nate look like this kiddo, but hopefully this will help him understand a little bit more of what he is going through. They will send you a free copy. My thoughts and prayers are with you!
As an audiologist at a childrens hospital, I too have had to give this diagnosis. It is extremely difficult to tell any parent their child doesn't hear perfectly and will need hearing aids, but especially so for families dealing with cancer too! I can't imagine being on the other end. I admire your strength and resilience in the face of yet another life changing diagnosis. It is just unacceptable for babies to have to deal with cancer, and then lose hearing due to the toxic medications they need to save their life! I would have to agree with previous posters that most kids Nate's age (his friends included) will find the hearing aids fun and cool, so try not to worry too much about this (i know, I'm telling a mother not to worry, but seriously try not to). Once Nate is healthy, I recommend looking up Hands And Voices they are a national parent/family organization for families dealing with hearing loss that have local chapters in almost every state. They are an awesome resource for navigating the new waters of hearing loss. They have a program "guide by your side" that matches you with a family who has already been through the process, which is nice! Im glad to hear that nate is feeling a little better, and I hope this info is somewhat helpful to you! Go SuperNate!
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