Sunday, November 8, 2009
That being said, I'll keep this one short and sweet! :)
This morning Harper actually asked Luke "Where's Mama?" I was in the shower and heard her and almost passed out! This weekend she also started nodding her head and saying yes when you ask a question. I am so amazed by her progress!
Last week she had her first speech evaluation since starting speech therapy. Her baseline scores put her at a 3-6 month level but this test put her at age level 15-18 months! Can you believe it??? Only 20 weeks of therapy and she's scoring within her age group!
Monday, September 7, 2009
By the time the ambulance got there I noticed that she was burning up. They had no thermometer on the ambulance, had no motrin/tylenol, and couldn't start an IV. I happened to have some motrin in the diaper bag (thank you God) and gave her a dose on the ride to Children's Hospital. They also weren't concerned when Harper kept drifting to sleep which is TOTALLY unlike Harper.
When we arrived at the hospital her fever was 103.5 after the motrin. They gave her another dose of Tylenol, took a urine sample (through a catheter, mind you), and checked her over. The doctor told us that she had a febrile seizure. Supposedly these happen when a child gets a fever within a short time frame (like 60 seconds or so). They told us that it could happen again and that it wasn't a concern if the seizure only lasts 30-60 seconds. Easy for them to say! Any longer and we should call an ambulance like we had done.
I cannot believe that her fever shot up so quickly. She had NO symptoms--no runny nose, no fever, no ear infection. I am sooooooooooo very thankful that she is okay. I know God is in control and taking care of this precious child!
Tuesday, September 1, 2009
However, the audiologist did not want to order the hearing aids or FM system at the appointment. Because of Harper's diagnosis of enlarged vestibular aqueducts, they would like her to use the loaner aids for six more months in case her hearing drops further. If that happens, she may need a different type of aid or only one aid in her better ear.
We also discussed with her our concerns about Harper's balance issues. She said that compared to some children with EVA Harper's case isn't nearly as severe. She said that some children have to wear a helmet because their balance is so poor. Any bump on the head for children with EVA can cause a drastic drop in hearing. We are so thankful that Harper is doing so well!
Tuesday, August 25, 2009
Wednesday, August 19, 2009
- Wheels on the Bus---She does some of the motions (wipers) but only sings "all through" which sounds like ahhh foo. "The wheels on the bus go round and round...." Then I point to her and she says, "ahhhh foo" and I finish "the town"!
- Ants Go Marching--She claps, stomps around, and says the "Boom boom boom boom" part. It is absolutely precious!
- The Clean-Up Song--She loves this and sings it ALL the time. She'll just be playing or sitting in her car seat singing "Up, up, up up". Maybe this is a sign that she's going to be mama's helper!
Wednesday, August 5, 2009
Harper has done a great job wearing her hearing aids---until recently. Now, if I tell her "no", do something she doesn't like, or try to challenge her while doing her speech therapy, she will pull both of her hearing aids out! She is basically saying, "I'll show you!" She realizes that this is one way that she can exert her independence and have control of the situation. In addition Harper has become increasingly impatient. For example, she wants her breakfast IMMEDIATELY after the microwave beeps. If there is a cartoon on tv/dvd player that she doesn't like, she'll point and scream at it until we change it to one she does like.
I have been worrying if this is "normal" behavior for a fifteen month old child or if this is related to her hearing loss and a sign of frustration. I had a long talk with her speech therapist today who assured me that although it is a little early, Harper's behavior is perfectly normal and very common with hearing impaired children. Thankfully, she gave me some tips to deal with Harper's new sassy attitude, but also warned that it will get worse before it will get better. I'm going to have my hands full!
Thursday, July 16, 2009
Susan lined up three toys (a monkey, car, and airplane) and told Harper to get the monkey ooo ooo ooo eee eee eee and throw it in the basket. SHE DID along with the car, airplane, horse, bus, dog, and cat!!! The first round she was using the object's name along with the "learning to listen" sound. She did so well that she played the next game only with the object's name. She only missed one!!!
After only four months wearing her aids, she is listening and learning way more than I thought. I am so proud of my baby girl!!!
Tuesday, July 7, 2009
We had a small party at home, but Harper had a blast! She really dug into her cake. We even had to clean it out of her nose! Notice how well she is doing with her hearing aids. The majority of the time she wears this headband instead of the hat. I bought her these cute headbands at Kids Unlimited in Cullman when she was younger and didn't have enough hair to wear a bow. I had no idea how handy they actually would be!
She got WAY too many toys, but I have to say she plays with it all. She especially loves this baby doll that she puts into the recliner and says, "Rock, rock". Luke and I got her a pink electric car. When she's old enough the stick comes out of the back and she can make it go by pressing a button on the steering wheel. She loves it!
Friday, July 3, 2009
The presence of EVA can be a symptom of a genetic disorder called Pendred syndrome, a cause of childhood hearing loss. According to a study by the National Institute on Deafness and Other Communication Disorders (NIDCD), approximately one-third of individuals with EVA and hearing loss have Pendred syndrome. With Pendred syndrome, the hearing loss is progressive, which means that a child will have less hearing over time. Some children may become totally deaf.
In addition to its association with hearing loss, EVA may also be linked with balance symptoms in a small percentage of people. However, the brain is very good at making up for a weak vestibular system, and most children and adults with EVA do not have a problem with their balance or have difficulty doing routine tasks.
Tuesday, June 30, 2009
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
Sunday, June 21, 2009
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.
Tuesday, June 9, 2009
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.
Saturday, June 6, 2009
Wednesday, June 3, 2009
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???
Thursday, May 28, 2009
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.
Friday, May 22, 2009
Tuesday, May 19, 2009
He was very impressed with Harper's speech at 12 months. As you can see on the sidebar, Harper is up to around 12 words. He said that just 2 words at this age is within the normal limits. Yea!! He said this is phenomenal given her hearing impairment.
I also want to wish Luke a late "Happy Anniversary"! We've been married four years on May 16th and still honeymooning :) I'm so lucky to have a husband like him. He is so honest and trustworthy and really does have a desire to please God. Men like him are rare.
Friday, May 15, 2009
What I wasn't expecting was the strange feeling I have at the one year mark. While I am happy that she is growing and learning more every day, I also feel sad that I am losing my baby. It is like every day there is a new step toward her independence--no more bottles, no more formula, self-feeding, etc. I just can't imagine never being able to witness again the amazing things that happen in the first year of a baby's life. God knows the desires of my heart, and I pray that He will let us have another child in His time.
By the way, this blog has been WAY too serious for my liking. I promise I will try to lighten it up soon!
Sunday, May 10, 2009
The doctor came in after the tubes were in place to tell us that the surgery was a success, but she had no fluid after all. He said the audiologist was performing the ABR and would be in to give us the results after it was complete. He said have a nice day, blah, blah, see you in a year.
In a few minutes the audiologist came in accompanied by the doctor. At that point I knew something wasn't right. She told us that the ABR showed a sensorineural hearing loss--moderate in the right ear, severe to profound in the left. I asked her to clarify what that meant, and she said that Harper could hear around 90 decibels in here left ear and a rock concert is 100 decibels. She recommended hearing aids in both ears. I asked, " How long will she have to wear them?" The audiologist said, "For life". There is no cure, no surgical fix. That is the point that reality set in, and I didn't hear much that was said after that.
The past two months have been life changing for Luke and me. We have dealt with the reality that things will be different for Harper, and things will be different for us as well. Of course, we still have a hard time dealing with this news, but God has allowed us to grieve quickly so we can spend our time focusing on helping Harper's development.
Today is my first Mother's Day. I am thankful for the blessing that Harper has been in my life. We are thankful for every single improvement. This situation has made us slow down enough to recognize the miracles that happen every day.
Thursday, May 7, 2009
The therapist said that they compare her to a two month old baby's development since she has only been aided for two months. We are so impressed by her progress so far!
Tuesday, April 28, 2009
Sunday, April 26, 2009
This is my first attempt at documenting our journey raising a personality-filled child who just so happens to have severe hearing loss. My hope is that this will help people to understand how difficult learning is for children who have never had the opportunity to hear spoken language the correct way and other challenges that come along with hearing loss like those ugly hats. I hope there are many more blogs to come.