Tough Love
April 25, 2006 9:00 AM

At some point in the future Juliana will have a Baha implant. Then her hearing will be close to normal, as it is when she wears her hearing aid. It took a long time for her to want to wear the hearing aid. She'd pull it off all the time. It was neat to watch her when she "clicked" and began to "get it" about sound. She began to intently watch our mouths when we talked to her. She does make random sounds, but is lacking mobility in her mouth. She's not able to close her mouth, and doesn't have a correctly formed upper lip, so she can't form words, yet. People with trachs can learn to vocalize, but she's too young. She does go to speech therapy though.

One of the most poignant things Juliana does is take a capped soda bottle, or water bottle, and tip it up to her mouth, copying what she sees everyone else do. I'm sure she wonders "What's the point of this?". People with trachs actually can learn to eat (with a special type of trach), but Juliana has no swallow reflex. She doesn't even swallow oral secretions, which most people do without even being aware of it. Managing her secretions will be easier when she gets old enough to cooperate with necessary procedures (such as suctioning).

Sometimes when Juliana woke up early in the mornings we'd be sitting in "my" big rocker recliner, reading or coloring, and Juliana would start coughing and need suctioning. I'd plop her down and point to the suction machine across the room—then we'd hold hands and run over to it. Now I'll just point and she runs over to it. She's starting to realize that being suctioned is a good thing. She still doesn't like it, and sometimes resists having her mouth suctioned, but the day will come when she'll do it herself. First, though, she'll probably want to suction me!

I've heard from a reader who has 1yr.old twins. One of them plays independently and one of them wants to be held. That one will cry until she's picked up and then stop immediately. Yvonne doesn't want to "spoil" the child and is afraid she's "creating a monster", but she can't bear to just let her cry. She asked if I'd had any of this with Juliana.

Well, yes. Juliana would be easy to spoil, because she is so sweet, and has been through so much that we just want her to be happy. And usually she is, but she's also very demanding. A child Juliana's age can drive you nuts chattering. Juliana can't chatter at us so she gets our attention by tapping on our shoulder or arm. Tap, tap, tap, tap. Usually the response will be a signed” Wait a minute". Tap, tap, tap, tap, tap. Next comes a hug and another "Wait". Tap, tap, tap, tap, tap. Juliana will take Tami by the hand and lead her over to whatever it is she wants. Then in a few minutes—tap, tap, tap.

I don't go through this on my shift. Juliana will be in bed, watching her DVD player. I'll be charting and she'll be signing along with "Signing Time". She'll look over at me at the key points to make sure I'm paying attention and signing too. When the disk is over she'll sign "change". OK. I'll do that. I'll change the disk once or twice, but not after she's just chosen one and I've put it in and sat back down. I'll sign "no". "Change." "No." "Change." "No." "Change, change, change." "No, no, no". Usually she'll give up and watch the disk. But now she's learned something new to add—"Change, please.” Change, please." "Change, please." It's hard to say "No" to that. Sometimes it takes what I call "hardening my heart".

Sometimes you make a decision on what you know is best for the child and don't let any display of being pitiful, or cute, deter you. Juliana has favorite parts of all her videos. She'd like me to stand there and play just her favorite parts for her. That would be cute, once.

I really don't know what for Yvonne to do, with one baby happy and one baby crying. After she rules out any physical reason for distress, she may have to "harden her heart" for a while. If anyone has any ideas I'll pass them along.

—Jeanne ("Party")

A Wave and a Hug
April 17, 2006 9:00 AM

Only one picture this time, but it's a good one, with Juliana sitting on her bed hugging her favorite "baby" (Sully from "Monster's Inc.). This is a good frontal shot showing the shortened nasal tubes and the new fullness in her cheek areas. This is where they added bone which will grow with her, giving them something more to work with when the time comes.

Also in this picture is our favorite thing of all—the DVD player! What a wonderful invention! Most nights when I get to Juliana's room, she's laying in bed watching one of her favorite videos. She doesn't like to be distracted from her "shows", but she takes a moment to sit up and give me a big wave, indicating she's glad to see me, and I feel like she really is—the greeting she gives me "makes my day".

If she's not in bed yet she'll come running to me to give me a hug, and then follow me upstairs to her room. She comes willingly—she loves the routine. She watches me set up her machines (monitor, humidifier, etc.) and if I skip a step she points and lets me know. When it's all ready she points to my big rocking recliner. She wants me to sit down, then she's ready to watch her show. But she doesn't forget I'm in the room. She continues to interact with me, signing or waving every so often, until she falls asleep. I always feel like we've had "quality time". What a dear little girl.

—Jeanne ("Party")

Pals and Pics
April 09, 2006 9:00 AM

Here's two more pictures. The first one (Hug!) was taken before Juliana's recent surgery. The second one (With Sulley) is unfortunately out of focus. It was taken with my "cell phone camera" which does not take high quality pictures. But I'm posting it anyway because it's the only post-op picture I've got so far. You can see that the long blue tubing in her nose has been changed to a shorter tubing, and you can see that her jaw area seems larger. I think most of the swelling has gone down and that her new appearance is the result of the bone grafts. And she's holding her favorite "baby" Sulley. She sometimes makes the Dad "sign" for Sulley. I think it's because in Monster's Inc. Sulley is kind of a "father figure". That's pretty smart!

I've been asked lately about donations for Juliana, and Pay Pal. The Wetmores have not obtained non-profit status and donations for Juliana are not tax deductible. They do not solicit donations. However, many people have wanted to donate to Juliana. Some people have sent checks addressed to Juliana or to the Wetmores to the Wetmore's P.O. Box listed under contacts on this web site. The cards and letters these people send are saved in a file for Juliana to read in years to come. I file them alphabetically by state. Other people have requested a Pay Pal number, and there is one posted on the caringbridge site. I don't like pay pal myself, because while the family gets the donations, there is no documentation of who sent the donations, making it impossible to send thank you cards. We have beautiful thank you cards which have been donated by Angelwing Stationers of Gloucester, Virginia, and I try to make sure everyone gets a thank you card.

This is a good time to mention, please, don't send Juliana any large toys or stuffed animals. There isn't room in the house for any more stuffed animals! Also, Juliana isn't the type of child who's interested in toys. She'd rather be climbing on the furniture! Tami is raising two very nice little girls and she doesn't want them to be materialistic, always expecting gifts every time they go to the post office! One thing I do encourage—some people have sent pictures of themselves with their children and pets. I put these pictures in Juliana's photo album. We look at the pictures almost every night.

Juliana did exceptionally well with this recent surgery. She came right home, without any complications, just like she never left. No more surgery for a long time!

—Jeanne ("Party")

Juliana and Sulley
April 01, 2006 9:00 AM

Besides Juliana's favorite DVD's, the Signing Time series, she has one more favorite, "Monsters Inc.". She wants to watch it almost every night. So we thought she would really love the stuffed animal of the main character, Sulley. But she didn't want anything to do with stuffed Sulley. She wouldn't touch him or even look at him. She continued to love the Monster's Inc. DVD, so when she watched it I would point to Sulley on the screen and then to the Sulley doll. It took quite a while for it to "click" but one night she actulally touched the Sulley doll and signed "I love you"!

After that the Sulley doll became her favorite baby. When watching Monster's Inc. she would tap me on the arm and show me over and over that Sulley on the screen was the same as her Sulley doll. So this morning when Tami told me that Juliana was playing with her Sulley doll I knew she's OK. Bless her littleheart!

Here's one photo for you—a beautiful picture of Juliana with her big sister Kendra.

—Jeanne ("Party")