Journey's health update

Journey had a procedure on Monday to both check her eyes a little more in depth, and also to fit her for an ocular shell. Usually ocular shells are painted to match the other eye and don't serve as a visual aid, but this one will be a little different. They made a mold of her eye:
He's going to use this mold to make a shell to cover her eye. This one will be clear to hold the space for a real one later, and to allow as much light as possible to get into her eye to see if it has any potential. They think it can see a little but aren't sure if it is able to improve at all. We go back in 4 months to see if that eye seems any better, and if it seems to have enough potential, they may try patching her good eye to strengthen the small one. Depending on how that goes, her future shell will have a painted on iris, and if she can see at all, the pupil will be clear, but if not, it could just be painted black. This will give her eyes symmetry, they'll both look the same size :)


Here's Journey playing before surgery, she thought it was hilarious to put a sticker on her nose, my nose, the nurse's nose... I'm so thankful she has such a strong spirit!



She also had an ENT appointment where they determined that she needs her tonsils and adenoids out, so she'll have that surgery in June, and hopefully it will help with her breathing. During that surgery, they're also going to do more in-depth testing on her ears to try to learn more about her hearing loss and see whether she would benefit from hearing aids. And on top of that, she has been doing some weird things the past week or so that suggest she may be having seizures, which is going to mean more appointments and tests. She's keeping us on our toes!

Journey's 2 year check up

Posting now before I forget, Journey had her 2 year well visit at the pediatrician this morning. She was a grump from the moment I told her we were going to see a doctor, thank you 'terrible twos', and was not her usual cooperative self. She still answered questions and did most of what they asked, but she did it while being very grumpy.

We went over all of the specialists that the geneticist sent us too, most of them sent a copy of the results to the pediatrician too. I'm not sure I've made individual posts about all of them so I'll give you a quick list here:

Early-On evaluation for speech, OT, and PT-didn't qualify for anything at the time
Cardiology-EKG and echocardiogram-both normal
Retro-peritoneal ultrasound (kidneys, bladder, pancreas)-her kidneys are a little bigger than normal but not enough to be concerned
Skeletal survey (x-rays of her entire body)-nothing out of the ordinary other than what is visibly noticeable on the outside (missing fingers)
Audiology-mild hearing loss from the 400 hertz range and up. Wants to do an ear exam under anesthesia.
Chromosomal microarray (blood test to check her genes for extra or missing chromosomes)-nothing out of the ordinary
Ophthalmologist- very near sighted, possibly no sight in her left eye, prescribed glasses. Wants to do an eye exam under anesthesia, and fit her for a bone shaping lens for her left side

And, unrelated to the genetics, we saw another hand doctor who will be doing surgery on April 5th to separate 2 of her fingers even further so it doesn't impede the growth of one of her fingers.

You read that right, that's 3 separate anesthetic procedures they want to do this year. And of course, each one is with a different hospital and they can't practice at the other hospitals, so unless we start over and switch doctors so they are all in the same place, we can't combine them.

Even though Journey didn't qualify for Early On before Christmas, now that we know her speech is delayed partially due to hearing loss, the doctor believes she will now qualify for speech therapy.

She also wants us to go back to the ENT since her narrow nasal passages haven't gotten any better. There was a mention of adenoids possibly needing to come out, we'll see what he says. She's sending us back to the same guy who wants to check out her ears under anesthesia so we are waiting to schedule that until we see what he thinks about her nasal passages.

So, all kinds of fun for miss Journey! She was 34 inches tall, but I didn't catch her weight. She has a pre-op appointment tomorrow so I'll come back and post her weight then. 

A Journey update

I almost forgot to mention! Journey has had a very busy last couple of weeks, with a lot of important doctor's appointments! First she had her cardiology appointment, after the cranky doctor wouldn't give us the echocardiogram (ultrasound of the heart) because he didn't think it was necessary, and we drove all the way to Children's just for an ekg. We emailed the geneticist to let them know and they said they really do want to check her heart, so we had to go back. Journey was great, they let her sit on my lap and they had a little tv that was playing Mickey Mouse, so she squealed "Mimi Mou!" Everytime he was on the screen, and didn't cry at all during the whole thing.

She had her hand appointment too, but that is a loong post and I think I need to post pictures to help explain, so I'll work on that tomorrow!

And finally, Journey had an appointment with a new ophthalmologist, who gave her a prescription for glasses! To jog your memory, we had seen another eye doctor, who performed an exploratory procedure under anesthesia, and after he was done he came and told me it was a complicated case and he needed to talk to a few other doctors before deciding how to proceed, and he would call us in a couple of weeks. He never called, so after a month we started calling him. And he never called back. So, we found a new doctor.

Everyone at this office was very nice and Journey was really good. This doctor told us the opposite of what the other doctor said, that her left eye can barely see, and her right eye is better, but still bad. The other doctor said her left eye (which is the smaller one) actually saw better because the right eye was so bad. But, this guy wants to do an exploratory procedure of both eyes too, so hopefully he'll have seen everything the other guy saw. He also wants to put in something like a giant contact lens, that goes around her smaller eye and fills in the space. They can change it to a bigger one, usually once a year, and he thinks they can even out her face. The area around her eye is proportional to her small eye, but if they put this prosthetic shape in, they can encourage the bone around her eye to grow so that her face will be more symmetrical. 

After we left, we drove right to our local eye place to get the glasses ordered. We ended up picking a soft silicon type that doesn't have any arms to snap off, it's all one piece, with elastic on the back, sort of like swim goggles. She was so funny, she wanted to try on all the pairs, and look in the mirror after each one. All of the employees came out to see her, and another customer commented that she also has an almost 2 year old, but he would never be this well behaved in that setting! We finally decided on this pair, Journey picked the purple, and the woman working with us wrote down the model number, and then said "ok Journey, come here!" and Journey toddled right over to her and stood still while she measured around her head and the space between her eyes. They couldn't believe how cooperative she was!

She is very nearsighted and getting a strong lens for her right eye, and just a clear lens for her left eye, as this doctor doesn't believe her eyesight will be improved by glasses in that eye. He didn't have anything encouraging to say about her lack of depth perception, other than kids, especially kids who are born this way, do eventually find ways of coping and figuring out depth in other ways. So, we just have to watch her very carefully whenever there is a step or ledge. 

And of course, how super cute is she in glasses?!?! I can't wait until the real ones come in!