One of the disappointments at Whitney’s six year old checkup came when the doctor looked in Whit’s ears. “The left tube has come out of her ear and is sitting in the canal,” he told us. Yes, that would be the same tube we’ve had placed over and over again to help with Whitney’s ear aches. Now that Whit’s adenoids are out when both tubes are in, Whitney is pretty healthy and happy. But we know almost immediately when that pesky left one has dropped out. Whitney has ear infection after ear infection.
She was treated for one in mid January. The antibiotic used to treat it worked great. That ran out last week. Sure enough, yesterday and today Whitney is again complaining of pain in her left ear.
Melanie and I aren’t sure what to do now. After so many tubes in that ear, I’m not sure we can ever find one that will stay in. And maybe we’re taking the wrong approach. I don’t know, really. I wonder what makes her left ear so uncooperative. The tube in her right one stays in and does its job very well.
I’m grateful that Whit is healthy in nearly every respect. We don’t have to worry too much about heart troubles or stomach troubles like so many of our support group friends. I just hope we can find something that will help Whit to be able to live without almost constant pain in her left ear.
9 comments:
How frustrating! I don't have any advice. I just wanted to say that it must be very frustrating to try to figure this one out.
We'll be thinking of you,
Genevieve, Gavin, and Zoe
Thanks Genevieve! I know you guys have been having some frustrations of your own this winter. Hang in there. We think of you guys all the time. Wish I had the vacation time to join you in Arches and Moab this summer too!
I completely understand about lack of vacation time. We were hoping to do a whole week in Utah after the conference but will have to limit it to 4 or 5 days. Seems like there is never enough vacation time banked. We do plan on being in Salt Lake on the Friday afternoon/evening before taking off early Saturday. Perhaps we can do a lunch or dinner with you guys (or just hang out). I know that is a long way off, so I don't expect you guys to know what you will be up to yet. I am way too much of a planner! I get so excited about conference and seeing people that it is something I like to think about, especially when it's a tough day. I am sure you guys know that that is like.
We'd love to grab some lunch or dinner or just relax with you guys when you're in town. Nothing wrong with planning ahead! By the way, Melanie's going to get this reservation stuff sorted out this morning when the office opens, so we'll let you know what's going on. Thanks for hanging in there.
Hey Nate - I heard there is a tube that has to be surgically removed. I believe it is called a "t-tube". Not sure if you have already looked into that or not. I was told that would be our next step if Lily's current tubes did not stay in....
I hate committing to two more ear surgeries, but a permanent tube might be what we end up doing to get Whit's left ear to drain properly. Thanks for the tip!
Hey Nate & Melanie. After 5 sets of tubes with Taylor too I know the frustration. This last time our doctor put in permanet tubes ones that have to be surgicaly removed. I thought gee why didn't they do that after the 3rd pair but any way they have been great and I don't have to worry about another one falling out. Well nowing Taylor's luck it will. lol
Hi I am new to this so hang in there with me. My 2 year old (Aiden) has a #1 chromosome loss. But it has never been documeted. The part that is missing is 1q21.3. He has simular issues. He is not eating on his own and only on puraeed food. Hearing is good doctors tell me but he is very sensitive to too much noise. Also he has mylin delay. Does your little girl have that too? I could really use some help with this because my husband is not really on board with me. Some support would be great.
Hi Kristin, thanks for sharing a little bit about Aiden. Most -1p36 kids do have issues with feeding. Whitney took longer than most kids to get into eating solids. But at 6 she eats everything we do and often eats better a meals than my picky 3 year old son. ;-)
Whit does get agitated in noisy environments or when she's overstimulated by large groups of people.
I'm not familiar with Mylin Delay, but I'd do some searching to see if there are groups of other -1q21.3 kids our there. And whether there is or not, you're more than welcome to check out the the -1p36 Yahoo group. There's a link to it on the right navigation pane of this blog. The folks there are great and I suspect many of the challenges you're facing are the same ones other members of the group are regardless of the specific deletion.
Hang in there! It does get easier. The bad days just make the good days all the sweeter.
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