Thanks to J and the Kentucky soil for making this summers garden such a success.

She also had an MRI and CAT scan, but we won’t know any results for these tests for a couple more weeks. All three tests were done while SJ was sedated, but it was a light anesthesia and she handled it really well. She had to fast for about 15 hours total and then she was allowed some juice, followed by soft foods, and eventually solids.

 

I never want him to feel overshadowed or neglected in the midst of what we are going through with SJ. He seems to handle it all just fine for now. I have not seen even one ounce of resentment. He loves his sister very much. I know what it’s like to be in his shoes. I was his age when my little brother was diagnosed with Leukemia, so I can remember what it is like to have a younger sibling that is needing constant medical attention. It’s a different situation, but  similar enough that I feel like I have some insight. In fact, it’s similar enough that my mom can relate to my situation. She knows what it is like to suddenly become an expert on a medical condition that you had no previous experience with. Or to be overwhelmed with Doctors, tests, and appointments while caring for the rest of your family. She also knows how it feels to suddenly drop everything to nurture a child that has special needs, to fight for them, and make major decisions on their behalf.

I don’t know why things happen the way that they do, but God has a plan and He has written my story (Psalm 139:16). You just never know when your personal testimony will be the encouragement that someone needs and right now my mom is one of the many people that have been an encouragement to me because of what she has been through, and I hope that I can offer that kind of compassion for Z.

A little over 3 months ago I did a blog post titled “What This Means (as far as I know)” and in it I tried my best to describe what was going on with SJ’s newly diagnosed hearing loss. At the time I admitted to feeling that I was underqualified to explain or understand what was really happening with her. I still feel that way, but we have made some progress in treatment, diagnosis, and overall adjustment. So here is an update of the 10 questions I had previously outlined.

1. What type of hearing loss does SJ have?
Sensorineural, meaning inner ear.

2. How did this happen?
We still don’t know. We may never know, but I have started asking her doctors about genetic testing. I have recently met multiple parents whose children were deaf as a result of a hereditary hearing loss called Connexin 26. I could be totally wrong in my attempts to search for answers, but Cx26  is is the most common cause of congenital sensorineural hearing loss and some of the stories I have heard that involve this type of hearing loss sound very similar to SJ’s. I won’t go into all the details, but I’ve included some links for those interested.

3. Was she born with it? We still don’t know for sure. My latest theory is that she was born with some hearing loss, but that it wasn’t so severe. That may be why she had definite signs of hearing before her 2nd birthday and has progressively gotten worse. It’s a shot in the dark, but it’s all I’ve got for now.

4.  Could she continue to loose her hearing?
We don’t know, but long story short it won’t matter if she does because her hearing loss is so severe.

5. Is SJ deaf?
YES. 3 months ago my answer was that she is hard of hearing, but since then I have learned from her specialists that SJ is in fact deaf. This doesn’t mean she has no hearing at all, but it means that she has a profound hearing loss.

6. Will she learn sign language or talk?
Right now SJ is unable to hear speech and therefor she can’t talk. We have confidence that with the right equipment she will be able to and we are working on figuring out what is best for our family with great urgency. As it stands, SJ only knows sign language and even that is very minimal because it’s new to her and all of us. For now though, this is how she can communicate and it is her first language.

7. What can she hear?
Someone at the deaf school showed me this video and it gives a good illustration of hearing loss. SJ is severe to profound, so even the final setting in the video is better than what she can hear.

8. What about cochlear implant? 
It’s amazing how much can change in 4 months. I was originally hoping we would never have to face the decision for SJ to have surgery. At our first appointment with the audiologist they didn’t even want to discuss the cochlear implant, which I think is just standard protocol- start with hearing aids then take it from there. However, now her entire medical team is recommending the surgery and we are currently in the process of looking at models, choosing a surgeon, and deciding on when to do it. There is a lot more to discuss about this huge life altering decision, but that’s basically where we are at right now.

9. What happens next? 
Tomorrow SJ will be sedated and tested for the ABR, MRI, and CTscan. This will be her second ABR which is the hearing test and that will either confirm what we already knew about her hearing loss or potentially see if it has worsened. The MRI will check any brain or nerve damage, which none of her team of experts are worried about because her vision, balance, and all of her motor skills are great. The cat scan will look at the bone structure and give a better picture of what is happening in the inner ear. The results will be in after about 2 weeks.

10.  What do we need?
I’ve made a few connections from the deaf school, which is so wonderful, but if you or someone you are close to is deaf, or has a cochlear implant then I would love to hear from you. I am always wanting to learn more and people with personal experience are one of my greatest resources.

You can reach me through my facebook page or email natobusch at yahoo (hopefully, I typed that in way that is spam proof).

Of course we will take all the pray we can get too. Prayers that SJ will be safe during the sedation and that the doctors will get all of the information that they need during these tests. Prayers for guidance on which hospital to use for the surgery if she gets it and even what this means as far as where and when our family will move!

Thank you all for being so loving and supportive. We will of course keep you posted every step of the way. 

What a milestone! Z started school yesterday. In Texas, or at least where I lived, his birthday is just after the cut off and he was scheduled to start kindergarten next year, but in Kentucky he is supposed to start this year. Enrolling my child in school for the next 13 years was a decision I didn’t want to feel rushed into or have Z unprepared for. So we decided to hold him back and stick with our original schedule, which I was told a lot parents do and it’s perfectly acceptable.

Z has never been to any type of daycare or nursery school. His first 4 years were spent at home with me just learning about life in a relaxed environment. That is why I am taking this Pre-k business very seriously. I treated yesterday as the monumental day he began his long journey of formal education. Maybe that is why I cried just a tiny little bit on the way there.

On Z’s first day of school I woke up earlier than I ever do, ironed his clothes, shoveled down some pancakes, fretted over whether I was sending him with enough food for lunch, and frantically looked for his back pack wondering why I hadn’t done all of this the day before. J and I managed to get both kids out the door and with shortness of breath I began snapping pictures rapidly. I threw any of my professional photographic training out the window. I was in the candid, crazy mom mode. The mom that kept the camera around her neck all morning and literally followed her kids into the school taking pictures all along the way.  

There was a moment though that the craziness subsided. It happened when J and I prayed for Z. That was the moment that I stopped panicking about details and started allowing reality to sink in. I remember days I thought I wasn’t going to survive the terrible two’s, the nap time refusal, or the multiple attempts at potty training. Somehow I see this day as a finish line for that stage in life, the PRE school stage. Like I can look back and say we did it. It’s the beginning yes, but it is also the conclusion of something else. He is no longer a toddler, a baby, or even a preschooler really. He is a smart, compassionate,  happy little boy. A little boy who marched right up to school on his first day and went and sat down with his classmates ready for this new chapter.

When I picked him up that afternoon they said he did a great job. Z showed me a map in the hallway on the way out. He loves geography. He held my hand as we headed to the car and I think he walked a little taller that day. I think I did too. 

 Z and J sharing a shake at Twisted Root and SJ super relaxed with me across the table. 

I’m not sure when I will be able to pop in for another update.  Starting tomorrow our week is P-A-C–K-E-D. Do you want to hear our schedule? I know, it’s all very intriguing. Tomorrow is the big day for my brother in law and his fiance’. Jeremy will be officiating the wedding and I am doing the photography. Then we will be turning around to make the long haul back to Kentucky just in time for SJ’s therapy on Monday. Tuesday is a really exciting day because Z starts Pre-K and I will have all kinds of details and pictures for that along with updates about SJ’s new deaf and oral school which she will also go to on Tuesday. Thursday is my next prenatal check up which are now scheduled more frequently since I am 31 weeks! Then finally, on Friday we have a really big appointment for SJ where she will be under anesthesia for the first time and they will be testing her for ABR, cat scan, and MRI which will take nearly all day. So, there is a lot going on which is really nothing new. Anyway, it’s good to have my web presence back and all of that nasty filth off of my page. The REAL messy mom lives on!

First of all, let me explain why this is an issue that affects everyone and why it is in fact a big deal that is worthy of waiting in line 3 hours just for a chicken sandwich. It mainly started when the owner of Chic-Fil-A made a statement to the Baptist Press involving his views on the Biblical principals of marriage, this not only included marriage between a man a woman, but also marriage that is a lifelong monogamous relationship. Apparently his beliefs went viral and the media began to really blow things up. Certain politicians were working towards banning the establishment in their cities (Boston and Chicago). This a problem. Governmental ramifications disputing free speech is completely unconstitutional, and you may or may not agree with the owner of Chic-Fil-A, but if you were ostracized for saying how you feel about an issue then you probably would see this as a matter worth fighting for. Hunger Games anyone? I remember several years ago a similar issue irrupted with the Dixie Chicks. In the end they posed nude on the cover of Entertainment Weekly covered with words about the freedom of speech controversy and the next thing you know it was history. I don’t think that the nude idea would work out so well for the Chic-Fil-A owner, but I’m hoping that people will look at the public statement that was posted by Chic-Fil-A representatives and quit labeling them and other Christians as hateful. 

We were excited about the storm that blew through earlier this week. Water is even more appreciated when you have a garden,
Z and his cousin with fresh picked zucchinis from our garden. 

 but things got a little scary when lightning struck the property and we heard  an extremely loud POP!!! We immediately lost all electricity. Everyone is okay, but the tv, furnace, and modem were all permanently fried. So, that has been no fun and it will be a while to have everything corrected/replaced. You can remember my parents in your prayers.

Everything else has been going well. I recently had blood work and a glucose test for this current pregnancy and the results showed me to be in perfect health! In the midst of all we have going on right now, I am grateful for this report.

Also, thanks to this baby we found a pediatrician. All the places I have called have shut me down saying that they are only open to newborns and are taking no new patients otherwise, but I am about to have a newborn which was the loop hole that this particular Doctor needed to sign up all three of my children. SJ and Z will have their first appointment next month. I was never satisfied with the first doctor we saw when we moved here and having someone that works well with our family will be a huge load off.

In other family news I found a preschool for Z. We didn’t feel ready to enroll him into Kindergarten even though in Kentucky he is the right age. He’ll start next month and will be going all day Tuesdays-Thursdays.