Viv came down with a cold on Friday night - BOO! Caught it from her dear daddy, who was also under the weather all last week - BOO! She's been okay during the day, but boy, we've had some rough nights. Nights that make me wonder
Is this September '07? Having a cold when you only have one small nostril to breathe through on a good day is rough. Poor baby.
Viv got hearing aids a week or so ago. I thought the clouds would part and the angels would sing once they were on her ears...but she doesn't seem all that impressed. She likes to pull them out and chew on the ear molds. I re-insert them and she pulls them out again. Picture that ten times in a row. Fun for mama! (I'm so thankful, though: Stanford has a great loaner program, so we're getting to try out hearing aids before deciding which ones to buy her. And I know it'll be a transition, like all things. Any advice, CHARGE friends?)
We have a pack of crazy raccoons who prowl on our back fence. Last week they ate through the string on Vivian's swing, and now it hangs sadly by one string, unswingable. Naughty, naughty hooligans!
Viv's still plugging along at eating pureed solids. She opens her mouth enthusiastically (progress) takes the food off the spoon, lets it sit in her mouth, and then it comes out. So, I'm thinking she hasn't figured out how to swallow. I'm struggling with whether this is developmental (she'll figure it out with practice and time) or a feeding issue related to the myriad facets of CHARGE. Doctors and therapists are just encouraging me to keep trying, so I do. (Thoughts? Advice?)
Please send positive thoughts and prayers for our little friend
Moriah. Her little body is recovering from the Nissen procedure in Southern California. She and Viv haven't met in person yet, but they share many of the same adorable qualities (hamming it up for the camera, similar wardrobe, blowing raspberries), and Victoria and I are convinced they are two peas in a pod. Moriah will be coming up for heart surgery in a couple of months with the same rockstar surgeon who healed our Vivian's heart last December. Please send healing and strengthening thoughts and prayers for the Nelson family.
15 comments:
hannah:
sorry to hear about vivi's and vince's colds. I know those things suck.
And unfortunately, I don't have any hearing aid advice, but it did make me laugh. (sorry-) My kids like to chew on everything as well. Sometimes I catch Devlin chewing on toys, etc. umm..hi... you're 6!
be careful with those raccoons. scary.
xo
go
hey- I recognize that owl shirt! how fun to see Vivian be able to wear clothes that were once Soo big for her! I LOVE the profile shot of Vivi with her hearing aid. I am curious to know if she notices the difference.. how many are you trying? I will keep Moriah in my thoughts... I have my first big test in Speech and Language Pathology tuesday night- ick! the T word. thing warm and fuzzy thoughts! Love you guys buckets
Sarah = 0 )
ohh.. and I will think of Many phlegm-GO-AWAY-come-again-no-other- day thoughts for Vivi (and Vince). maybe a relaxing baby bath with lavender would help? and maybe an Ambien for Vince (ha)!
Sweet girl, so sorry you had a cold! Hope she gets used to the hearing aids soon. Maybe the racoons did that because you give the squirrels too much attention.
They just had to find a way to get noticed.
Feel better Miss Vivi!!
aaaw. thanks hannah for the message on moriah. i just showed my mom the pictures of vivian and she exclaimed "that's moriah!!" i love our girls =)
unfortunately, i don't have any advice on the hearing aids and eating because mo mo isn't there yet, but when she is, we'll be coming to you on what to do.
lots of love, hugs, and kisses,
victoria
"Paciencia y buen humor" decia mi abuela. I know nothing about hearing aid but... don't we get all bother when something is on our ears? why Viv should feel different than us? ... I am sure she will get used to it. Kisses miles for my sobrina!
Hi Hannah,
So, I have many things to say on this topic... there are several things to consider.
- First - the chewing on the aid is a good "typical" developmental thing. So it's good and bad all at the same time!
- Keeping them on/in her ears - - takes time... practice. She has to learn to wear them. This comes with time. Also, some parents have been known to use a little toupee tape to help hold them on (for more CHARGE shaped ears). We tried this on Gracie's smaller ear because there wasn't anything to hold the BTE (Behind the Ear) part on her ear... but eventually we gave up... it didn't work and just infuriated her! But it works for some! Plus, we quickly moved on to a bone conduction aid.
- If she has a cold, there could be an additional conductive component to her loss right now. Might cause decreased hearing and even (quite possibly, actually) discomfort when wearing them. If there is fluid in her ears and/or she has sinus congestion, her hearing and hearing behavior will be affected.
- I completely understand the expectation for the "clouds to part" when she put them on... remember, though, she has to adjust to a more amplified world. Hearing with aids, for Miss V., will be a learned behavior. And at first, she might not care or like the increased sound in her life.
- Do you have Deaf and Hard of Hearing Services for her? I would HIGHLY recommend it if you don't. She should be entitled (given her diagnosis and loss) to an Early Intervention/Infant Program DHOH teacher - - usually once a week. This person should be able to help with different listening skills, sign (if you choose - - and can teach you, too), and basic auditory training to jump start what she will get once in preschool.
- Regarding feeding... practice, practice... again! Is there an OT involved thru your local infant program? Does Viv regularly see a Speech/Feeding Specialist as an outpatient who specializes in feeding issues? Has she recently had a formal swallow study done?
I would recommend all of this... and would end by saying I think you are doing ALL the right things at home... so keep them up!
- I can't remember Viv's chonae situation... I know she is blocked, but the specifics aren't coming to me as I type this... this might have some affect on her ability to coordinate a swallow (or her comfort doing so). If she is limited on how much air she is getting because of blockage, it could affect her desire to swallow. This makes it more difficult and depending all of the cranial nerves involved for her specifically, it might be enough work for her to use her good nostril while trying to do everything else... might - - I'm not sure, obviously! Something to consider, though. Our kiddos have complex involvement in that whole area of their little bodies... and how they are "wired" (as I like to say) will have a huge affect on how it all comes together.
I am sure I could think of more... but this is what streamed out off the top of my head. Should have probably emailed you - - it's long! :-)
Hugs to you, Raspberries to V!!!
Be patient... think "Little Engine that Could" chugging up that hill!
I think you are doing an amazing job juggling it all! :-)
Kristi
oh no- I am sorry Miss Vivian is under the weather...I hope her little pal, Diego, did not get her sick. Hope she is feeling better and you are getting more sleep soon!
She is so scrumptious! Helmet, hearing aid, she would look awesome in a paper sack! I don't think we've talked about it, but I am obsessed with the Racoons that scale our fence...they freaks me out, but I can't help but try hard to see what they are up to (in the dark)!
Sending lots of love to Moriah!
Hi Hannah,
Jacob and I just got back from vacation and I loved reading all your updates. Of course, we also loved getting the card from you and Miss Viv before we left - so adorable!
Congrats on the race accomplishment -- good for you for achieving that goal! And I hope Vivian and Vince are feeling better soon ... colds are a bummer, but I'm sure your TLC will help ensure a smooth recovery for them. Take care and best, Cass
Hope you are feeling well again, Vivian, and you and your mommy and daddy can get more sleep!
I'm not much help on the hearing aids. Katie took hers out constantly and chewed on them, too. Then she got a cochlear implant--and took that off constantly and chewed on it too! :-)
She wears it much better now, but it took a LONG time, as did her reaction to sound too. These kiddos require lots and lots of time and patience, that's for sure!
xo
Leslie & Katie
I second everything Kristi wrote.
1) I remember feeling soooo frustrated about the hearing aid situation...thinking it would never ever happen. (We tried tape but that didn't really work...have you tried a "huggie"?) However, now he NEVER, EVER takes it out unless I ask him for it (before sleeping or bathing). He'll get irritated if it is buzzing, but he is learning to just push in the hearing aid more. As for the more CHARGE style ear, we haven't had any luck in getting the mold to stay in without a lot of feedback. The long and short of all of this...keep trying, keep trying, keep trying. It doesn't happen for all kiddos...but it does happen. And it is magical when it does!!!
2) As for eating, is she safe (passed a swallow study) for pureeds? If so, it simply requires more and more practice. What foods are you using now?
Again this can be a very long process, but now I am absolutely amazed with Max's progress!
Let me know if I can help in anyway at all...seriously. You are doing a great job with everything...AND she is such a lil' cutie patootie!!!
Love, Amy and Max
When Kennedy got her hearing aids (9 months), it was very difficult to keep them in. People suggested using wig tape and all sorts of different things but the best thing that happened for her keeping her aids on was getting her glasses at 12 months. At that time, we put a critter clip on each hearing aid, up over each arm of the glasses, then cinched them tight to the glasses, which had the back of the head band to help hold them on. It sounds awful but it did work. If you go to http://chargesyndrome.info/photogallery.html, then look at the first group of pictures, fourth one down "New Glasses" picture, you can see the cords hanging down a bit, and in the next group of pictures, you see it better in the "eating fourth birthday cake" pic. Hope this helps!
As someone who had to get used to hearing aids at a young age... I remember being in awe at the other kids on preschool who would throw and break theirs. Mine were a gift - a window into another world!
Here's the thing that makes it different for each child... I actually have LESS hearing than the average profoundly deaf person, but am able to utilize what remains better than most. It truly depends on how much the brain links and recognizes.
I am very optimistic that as she is learning to sign and communicate with you (YAY!) that she will learn to also associate the sounds of those words or actions as triggers for what she wants to pay attention to.
It just takes some time to get used to.
Honestly, they left hearing aids in my ears so long - even through infections and discomfort... they finally realized the right hearing aid was doing nothing for me and let me stop wearing it (the amplification was not recognizable and created much dizziness).
Your little girl will learn to tell you in time. For now, they are wonderfully interesting :)
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