Tuesday, December 29, 2015

What can Haleigh hear?

We have a wonderful ENT. She has made this process smoother than it could have been. 

On December 14 we took Haleigh to CRS, for her audiologist appointment. They did three different hearing test. The all showed the same profound hearing loss in the right ear and normal hearing in the left. She was fitted for a hearing device and we were told we would be contacted. So a week later I get a call reminding me of Haleighs appointment with DrE on the 22nd. DrE had set it up, she wanted to go over everything with us and make sure we understood everything. So hear is what we know. 

1. Haleighs cochlear nerves are underdeveloped. It's a birth defect. If you don't know where that is this should help. 

2. She probably couldn't hear out of her right ear from birth. However since she did pass the newborn screening, we can't be sure. And because of that we can not be sure she'll never lose hearing in the left ear. Therefore we will be having her tested with DrE once a year. If her left ear dips at all below normal, be will begin sign language classes. We will not do in depth sign now, because apparently some children learn to sign and refuse to speak. So we will be learning simple signs and take a wait and see approach to the other. Also if she ever starts to say huh? Or what? Or complain she can't hear us. We will take her directly to DrE. 

If you don't know the difference between normal, minor, major and profound hearing loss. This should help. 

3. She will not be getting surgery for this. She doesn't need it. 

4. There is a hearing aid that she could get. However, it will not help her and may even hurt. How's that? Well a couple of reasons. First, if you don't know what a hearing aid looks like this should help.

If we were to get a hearing aid it would actually be a transfer device. An aid that makes noise louder will not help. No matter how loud something is Haleigh hears it as if she has ear plugs in. Wearing a device that makes things launder will not help. The transfer devices, take sound you hear on one side and transmits it to the other side. She would wear a device on both ears. So first there is the stigma of having hearing aids behind both ears. Second, right now even though it's muffled and she can't tell what the sound is, if lets say an ambulance or a car is coming from the right, she can hear a muffled noise and know that something is on the right side. If she was to wear the transfer device she would lose that ability. So if the ambulance was coming from the right she would hear it on the left. She would have no idea there was anything on the right. DrE said these devices have a place. For adults in a professional setting they are benefiting. For children still grasping where sound is coming from it's not. If she was to get the device we'd also have to have this sign 

Placed where we live, since she wouldn't know if a car was coming from the right at all. We have decided that she will not be needing the device. 

4. We are blessed to live in a community, that has a school system that is small and that employe teachers who care about our children. DrE's main concern was Haleighs schooling. She needs to be sat so that her left ear is to the entire class room. No circle time. No games of telephone. DrE was blown away by my statement that I had already contacted the teachers and nurse at Haleighs school. She was impressed with the acceptance of Haleigh needed special placement and ease of getting her seat moved. She stated that in most county schools there are letters that need faxing and papers that need a doctors signature, before the teacher will do anything. It sadnes me know know that about the county schools. But also makes me very proud of our city district, and its efforts to treat each child as an individual. 

So what can she hear? Well if you are in her right. She might as well have these in. 

If she's standing facing you or your on her left she hears you. Just remember to speak clearly. She's processing what you're saying with one ear instead of two.



Monday, November 30, 2015

CT Results

Today was my day off. (And just incase you didn't know, days off are a lie!) I missed a call from Dr.E (our ENT), while I was at Dr.T (our ped) office with Landon, getting his check up. (All good!) I called back and waited hours of course, finally the nurse calls back when I was almost taking a nap. Sigh. So. CT results. Haleigh has Congenital abnormalities in her Cochlear and Auditory nerves, in both ears. This happens around 6 weeks gestation. Since she has the Abnormalities in both ears there is no clear answer as to why she lost hearing in one ear and not the other. Studies show that she shouldn't lose hearing in the other ear. However if she did she will be the exact child the cochlear implants were made for. And she would qualify for that surgery. Right now with her hearing at 100% from her left ear, implants is not something we are comfortable with. We see the Audiologist the 14th and hearing devices should help tremendously. 

I try thinking back about my pregnancy with her. Something happened at 6 weeks. So many things that are just a tad off that form and "happen" at 6-8 weeks and I wonder if the early losses we've had were caused by these and othe Abnormalities. If we had not already seen the geneticist I would want to. But he ran 2 fun genetic panels on her and found nothing. Just the physical markers of over two dozen different syndromes. I definitely don't need answers. She may though one day. She may wanna know why everything fell on her, and I don't have one simple thing to tell her. Except thy God doesn't make mistakes and these abnormalities, are human ways of defining Godly creation. 

Monday, November 23, 2015

Ears and Eyes Oh My!

Ears- We are all signed up with Alabama Childrens Rehabilitation Services. (ACRS)  The letters from her others doctors took the longest. Once they had those, the social worker called, I went in Thursay and the paper work took an hour. I met with the case worker, and audiologist. Both very nice ladies. The Audiologist will be doing some test on Haleigh the 14th of December. Apparently there are differ t types of hearing test and while she has had three test, they were all the same type. The type she will be giving showed how Haleighs brain resoponds to different sounds, when exposed to one ear, then the other, then both. I also learned that Dr. E (Our ENT) runs the hearing clinic. She sees all the children's who come to the Mobile Clinic and will see Haleigh every 3-6 months. She will also over see all of her care. You have no idea how much that eases me. I am so thankful we already have a good relationship with her. I haven't heard anything back about her CT yet. But it is the Holiday week, there may not even be anyone in the office. 

Eyes - When we saw Dr.J and then went down stairs to order Haleighs glasses, I was less thrilled with their attitudes. The ladies were less than nice, and less than helpful. However I knew our insurance went there, so I decided to let Haleigh pick something from there. I was very in the "one stop shop" mindset. We we checked out we were told it would be a week tops. This past Thursday It had been a week so I called. They now say, the lab that we have to use because of insurance is backed up and it will be another 4 weeks on top of the one it had already been. I was about in tears. So, I went to Walmart and asked them how long it would take o get they a pair from there. Answer... 3 business days. I got Haleigh out of school at 230, took her to Walmart and ordered her a 9$ set of frames with her lenses. (26$). I just prayed they would be in before thanksgiving. Sunday afternoon during my nap, i got a phone call (and I was so mad! lol), it was Walmart, Haleigh's glasses were ready. Excited we went and got them. And they look amazing. Shr wears them without us making her. She said she can see better without us even asking her. She is still asking about the "other glasses" and we hope to have them soon. But until then..... 

oh My....- look at that sweet girl!! 

Wednesday, November 11, 2015

New Adventures

Haleigh has never been a typical person. From the moment I found out I was pregnant with her, everything was different. I felt different than I had in my other pregnancies too. She was not a typical baby. Of course there is the Nevus. But there was also her reflux and failure to thrive. The milk, soy protein intolerance. The allergies. The Asthmatic episodes. The genetic markers, that never lead to anywhere. Throughout everything she was a happy baby, grew into, A happy heathy child. So I can't say I am too surprised about what's next for us. For her. But I really was. So I'm going to back up a little. And start from a couple months ago. 

Haleigh started first grade this year. She had done well in kindergarten. About a month into school, Haleigh's teacher (who I love) called and said she thought Haleigh would benefit from after school tutoring. It seemed she had lost a lot of reading skills over the summer. So we signed her up. She was doing well. But still not getting her sounds like she should have. The teacher decided to refer her to reading intervention. It's a great program and had helped Landon read on grade level in less than a month! Before they start the school sends a note home asking for permission to screen their hearing and vision. Did the same with Landon. I signed the form. Told Jason they would be checking it. Slipped it into her back pack. And didn't think anything of it. That was 2 weeks ago. 

Last Tuesday while at work I got a phone call from the school. I figured that one kid was sick or something. It was the nurse, she had given Haleigh her vision and hearing screening. Her left ear was fine. They said she failed in her right ear ear and both of her eyes were worrisome. They suggested I see the ENT and get a full eye exam. We decided to start at the pediatric office. That appointment was Friday afternoon, we saw the PA, who I really like. Their screenings showed Haleigh has no hearing in her right ear and was seeing about 40/20 in her left eye and 35/20 in her right. They confirmed we needed to see ENT and Eye. Appointments were made quickly. Monday we saw ENT. Dr.E, she did all of Landon's ear surgeries and I trust her fully. Another Hearing test was preformed and she confirmed Haleigh's left ear functions at 100%. Her right functions at 3-5%. With that she ordered a CT scan so she can see the inter workings of her ears. She is interested in seeing if her nerve is underdeveloped, damaged or small. She is sure that this is something Haleigh has had all of or most of her life. Definitely not something new, definitely something she's had since she was an infant. Haleigh did have a newborn hearing screen. We've since learned that just as with everything else there is always a chance of that screening being wrong. Just as a hearing child can fail a screening, a deaf child can also pass one. Because there is some function in the right ear we have been referred to the Hearing clinic at Alabama Rehabilitation Center next to the children's hospital. She will have a team there that will evaluate her for a hearing device, they will also determine if she needs any kind of therapy and if so what kind. I have spoken with her social worker and that is in the works. However it is ran by the state of Alabama so there is a lot of paperwork and some waiting. The good news is this is not something that's getting worse as we wait. The reality is that why we have just learnt of the issue, she has been living with it her whole life. 

On to the eyes. 

Her eye appointment was quick and easy. She didn't like the drops, but hey who does right? Haleigh's vision is 40/20 in her right eye and 50/20 in the left. The left also has an astigmatism. Her glasses are so cute. They will be ready in a week. Dr.J (eye dr) said she'll need them to read and watch tv. When she's older to drive. And they will recheck every year. But for now she can take them off in PE and she's good if she's out playing. He said some kids get them in and want to wear them all the time and that's fine too. 

I have done A lot of thinking over the past week. Thinking we went through so much already with her. Why couldn't they find this as a newborn? Why now? What am I suppose to do? Would This have been easier as a baby? Did I miss this because I was too busy with everything else we had going on in our family?  Then I realized that while yes, she had so much going on no one ever said a word about hearing. And I was already so overwhelmed. I was at my limit with appointments, there were nights I just sat watching her breath, praying over her. I leaned on God with everything I had. And he knew. He knew I wouldn't make it through having something else added in at that moment. He new I needed time to deal with so much other stuff. Gods timing is never wrong and he makes no mistakes. So no, I don't know exactly what will happen when we go to the hearing clinic. I don't know if she will need a hearing device, or if we will all learn to sign. I don't know if this is the last thing that will come up with Haleigh or any of the other kids. (Doubt it though) But, I do know that we are exactly where we are suppose to be. Doing exactly what we are suppose to be doing. I know that Haleigh is not upset about anything going on and she knows how loved she is. I can tell you that we are not sitting around with our heads down full of worry and wonder. I can tell you we feel no pitty and don't want any. While Our family may not be typical, we are perfectly and wonderfully made, by God himself. 

Tuesday, July 7, 2015

A goodbye

Today we said goodbye to my grandma. Haleigh last living great-grandma. She was 90 years old. Lived a very happy full life. So many accomplishments over her life. 4 kids, 15 grandchildren, 35 great grandchildren, 4 great-great grandchildren. 

Haleigh, remembers some of her. She had been in a nursing home for about 18 months so she hadn't visited but twice during that time. 

All of my children were very well behaved, they listened and were mostly still. I am so very grateful for that. They understand so much more about death than I did at their age, but I don't see it as bad. They have just learned younger. 

Thank you for all the prayers over the past week from our friends and family. May you be blessed because of the kindness you have shown us. 


Tuesday, June 23, 2015

Up next ...

This last year has been a calm one compared to the last few. Especially for Haleigh. 

There are a few things I forgot to blog. 

1. Graduation! Haleigh graduated from kindergarten on May 19,20015 

2. Haleigh prayed to revive Christ on June 8,2015 

3. Haleigh has decided she wants to have the Nevus on her nose removed 

I struggle with this because I of course want what's best for her and as her parent I make all her choices for her. So ultimately this is my choice to make. However we have always let her lead these choices and I have faith that she will not regret asking for this later in her life. 

The before appointment 

We had her pre-op appointment todY and there are 3 things stdnding in the way of what she wants done. 
  A. She still has a bit of nevus on her cheek ad her eye is dropped down. We have to remove the spot and bring up her eye first. That will happen the First week of August. Before school starts. 

 B. She has a tan. We apply and reapply sun block to no avail. She has not gotten burned at all she is however tan. We must wait until her tan fades some before we can do this surgery. He said he needs a better natual color line first. So we are thinking Christmas brake. 

3.  There are two ways we can do this. A small expanded placed in her cheek. Or a skin flap brought down from her forehead. That would leave a scar on her forehead. Haleigh doesn't want an expander. However when she's older I think she would want that insead of another scar on her head. Jason and I talked and I am 95% sure we will be going the expander road again. 

Haleigh is have a great summer and I will be updating more often now that there is something to write about. 

Wednesday, March 25, 2015

Spring 2015

Haleigh is doing really well. She's in her 4th quarter of kindergarten and doing well. I will be taking her for a check up this summer with her surgical team in Birmingham. Until then here are some recent pictures of her.