Another Day at Children's Hospital

Since all of Harper's genetic tests have had normal results, the next step is for her to have a CT scan of her inner ear to look for structural abnormalities. Even though it is just a simple, sedated procedure, I am much more nervous this time around compared to when she got tubes. She is old enough to realize that she is at the hospital or doctor's office and get really worked up. She even gets upset when we go to the HEAR Center for speech therapy and all they do is play with her there. I'm pretty sure that we won't know any results tomorrow. They usually send the report to the doctor's office who will call us with the results. I'll keep you posted!!

Be anxious for nothing but in everything by prayer and supplication with thanksgiving make your requests known to God. And the peace of God, which passes all understanding will keep your hearts and minds through Christ Jesus. Phil 4:6-7

Not-So-Happy Father's Day

After eating a great Father's Day meal even before gifts or dessert, Luke and I made a little trip down to Children's Hospital. Harper has started shoving her high chair tray when she wants out or gets angry. While I was putting in her hearing aids, she got mad and shoved the tray. Well, somehow the tray wasn't latched and she went face first onto the tile. We were afraid that she had bit through her lip or chipped some teeth but couldn't tell because her lip immediately puffed out. We grabbed her up and took off to downtown.
All in all, the doctor said everything was okay. Her teeth weren't loose. She had bit through her lip but not bad enough to need stitches. The worst part was her frenulum (the part that attaches your lip to your gum) is caught between her front two teeth. He said it would come out on its own. She was laughing before we left and doesn't seem to be in pain at all.
Not a great way to spend your Father's Day.

Genetics Update

The genetics counselor called today to tell me that Harper's tests were normal. Good night, can they make up their minds? The ENT clinic told us that she tested positive for the Connexin 26 gene mutation. Then, the geneticist told us that she was only a carrier for the Connexin 26 mutation so they did further testing. He felt sure that one of the tests would come back positive. Unfortunately not. You may be thinking, "Why does this crazy woman want the test to be positive??" Well, it would really help to know what we are dealing with--if the loss will progress, what type of therapy works best, or if any other body parts (eyes, heart, kidneys) will be affected.
What next? Harper will have a CT scan of the head to check for any structural abnormalities. Poor Harper will have to be sedated again and that means getting to Children's super early on an empty tummy. After putting her through all this, I'm just hoping that we'll get some answers.

Walk Walk Walk

Harper has really been making some progress with her walking. Her pediatrician told us that she would probably be a late walker because hearing loss and balance issues go hand in hand. Take a look at the bumps and bruises she's already gotten on her face! Go Harper Go!

Hot Head

It is finally June, and it is scorching outside!! I love summer and hope to get the pool going so we can swim this weekend.


That being said, I need your help! Harper is having to wear hats to keep her from pulling her hearing aids off and putting them in her mouth. It is WAY too hot to wear a hat in the middle of summer. Her poor little head is so sweaty when I take it off. Here's the ad from hannaandersson.com

Doesn't this look like Harper? Big cheeks and everything!

The audiologist only suggested this hat and toupee/wig tape to deter her from taking them off. We have been moderately successful using a stretchy headband but if she ever gets a hold of them OFF THEY COME! This is especially bad if we are in public and she happens to drop one.

Any ideas on what we could do???

Another day of speech

Harper had speech therapy again yesterday. Usually she is great at participating and seems to enjoy it. Yesterday she wouldn't repeat most of what we were saying to her. I had noticed this pattern when we had practiced her "Learning to Listens" this past week. She has begun to default to her usual "bye bye or ba ba" as an answer to everything. Also, instead of saying "uh oh" very plainly, she has been saying "uh uh". I just chalked it up to a bad week, teething (3 or 4 new teeth this week for a total of 13), stubbornness, or laziness.
When I explained this to the speech therapist and she witnessed her behavior yesterday, she had cause for concern. Supposedly, this is a sign of progressive hearing loss. She will go see the audiologist tomorrow for further testing. I just don't think I am prepared for the hearing loss to get worse.
On a happy note, I am currently listening to Harper play "Peep-Eye" with herself when she is supposed to be napping. It sounds like "P-Pie P-Pie P-Pie". Hilarious.

Faith

I read a blog today that said "I don't want a life that requires much faith." This is SOOO the way I feel. I want things to just roll along without a hitch. He unpacked the thought further and said:"Here’s the thing I’ve realized, though. My natural inclination to have a secure life that needs little faith ends up being a life that needs very little God, either. That’s the deadly part of security and safety, we get used to living without God. There’s no need for God to show up. “All set, Lord,” becomes our silent, unconscious prayer." Boy, do I need to keep that in mind.