I have decided to use our blog again versus typing this all on Facebook or Instagram. I am doing this, because the post is a bit longer than normal. Also, Natalie gave me the okay to share what she has been going through the past few months.
On November 20th shortly after lunchtime, I got a text from Natalie asking me to pick her up from school, because she was super dizzy and her ear hurt. I got her around 1:45pm and called the pediatrician to see about getting her in. They were full for the day and I was not about to take her to Urgent Care with Amarillo covid numbers being so high. I figured a little rest and pain reliever would do the trick and if she woke up on Saturday still miserable, I would call the on-call doctor.
On Saturday, she still had a slight headache, but felt fine shortly after waking up, so I figured she was good. The following week, which was Thanksgiving, she told me she could not hear out of her left ear. Of course we tested it some and big brother being a big brother helped. All little sisters out there understand that one.
She really could not hear out of her left ear. I thought maybe she has some wax build up and it would work its way out. Well, the following week when she reminded me she still could not hear, I figured I needed to call the doctor. I honestly thought she would need another set ear tubes or they would need to clean her ears out. However, her ear was fine, everything looked good.
We then had an audiology test the next morning. Please know, back in March of 2017 after her second set of ear tubes she had a hearing test and past it with flying colors. This time though, she did not even pass the newborn screening. The audiologist we saw said she had severe hearing loss in her left ear.
After the audiology test, he said we should see our pediatrician again and recommended us seeing an ENT. She has had ear tubes twice, but both are by different doctors in Dallas that are no longer at Children's. We thought the best thing was to see a local ENT, Dr. Stroud, and our pediatrician agreed.
The next week (December 9th), we saw Dr. Stroud and did another hearing test. This time her hearing test was a bit off, but not near as bad as the first one. She definitely has hearing loss, but could hear slight sounds when words were spoken to her, basically a mumble. Dr. Stroud believes she probably had some virus, so he gave her a strong steroid for a week. He is amazing and even called Dr. Zellers, her cardiologist to make sure it would be okay and let him know what was going on.
After a week of steroids twice a day, we went back for her third hearing test in three weeks! This time she could hear some, but still not back to normal. We are taking this as a blessing! Baby steps in our world are huge!
In cases like this, a lot of times doctors will do an MRI, but Natalie has magnets in her back and a device in her heart. Dr. Stroud said he does not think an MRI would even show us anything new either. We decided the best thing at this point is to wait a month and then test her again.
We followed up in January and did another hearing test. The results were the same as the one before. I am looking at this as a glass half full, so I am thankful nothing is worse and that she is stable. Dr. Stroud thought we should do an ABR (Auditory Brainstem Response) study to see if we could find out anything more.
We had her ABR test in Lubbock on Monday, February 1st at Texas Tech. The ladies in the clinic were all super nice and great with Natalie. Natalie just had to sit there for about 45 minutes perfectly still with some electrodes on her forehead and ears. She was a rock star! We then had a few more hearing tests.
Natalie has mild to moderate hearing loss in her left ear. She can hear occasionally, but most of the time, she hears a shushing type sound. The good news is, the right is perfect and she can hear extremely well.
The doctors believe a hearing aid in her left ear will only make it worse by amplifying the mumbling sounds. We will probably never know what caused this, but more than likely it was some type of a virus. Will it get better? Who knows, but more than likely she will live with it the rest of hear life.
My mother has a friend whose lost her hearing in one ear as child from a virus. She learned to live with it and has done great, so that was encouraging. I have heard a few other similar stories in the past few weeks.
I think one of my biggest concerns is middle school. You have twice as many kids and you are switching classes a lot more. I was a bit concerned before the hearing loss, just with her heart and back. Thankfully, she is already on 504 and we will just adjust it where we need to.
Every day the way Natalie handles new and unforeseen circumstances inspires me. They way Carter supports and cheers her on, makes my heart smile. Most days, they act like typical brother-sister, but when they need each other the most, they are each other’s biggest champions.
We are asking for prayers for Natalie's ear to heal and restore all her hearing, even a little more hearing. If her does not change from now, that is still okay, but I pray for her heart as she walks into a new chapter of her life and handles new obstacles. She has already been overcoming some in school with class work and with friends. If some one is talking to her on her left ear, she cannot hear them at all. A few times, friends have gotten upset thinking she was ignoring them, but she really could not hear them.
We then had a quick trip to Dallas to see her back doctor, Dr. Richards the first of February. Natalie originally was not scheduled to go back until spring break, but she has been having some back pain and we wanted to check it out.
We did x-ray prior to meeting with Dr. Richards to make sure we did not have any issues with the rods. Thankfully, her x-rays looked the same as in November. Here is where the appointment became weird, not in a bad way, just weird.
During our last appointment in November, Dr. Richards mentioned we would talk in March about having her final surgery this summer, a spinal fusion and permanent rods. Last Friday, Dr. Richards not only told us, we no longer do any more lengthens, but also that he does not recommend surgery this summer. He said she will eventually need surgery, but thinks she will be fine for a few years. What!!!
Okay, I understand the no more lengthenings. Right now everything looks good, except for the two screws that have slight come out a bit, but that are probably incased in bone or scar tissue. He believes if we continue the lengthenings, which we are not really getting anything out of anymore, it will or could effect her spine, causing the screws to come out more or the spine to twist. I asked him how this would affect her as she continues to grow and would it cause pain. He said she will not have pain and will just not grow where the rods are, but will grow above and below them. The growth is not much different, if she ended up having surgery, so no changes there. I am not sure about the no pain, but we will take a day at a time.
Ready for the next kicker! Dr. Richards just announced his retirement, which will be in July.
Dr. Richards has been a blessing to us! We have been with him since Natalie was a week old. I am definitely sad to see him retire, but I do know he will put us in the best hands once he leaves. He already recommended another doctor at Scottish Rite and we will see him in August.
So yes, we went from having quarterly appointments to six-month appointment and we went from having surgery this summer to no surgery! I am so thrilled to hold off surgery, but I am concerned as Natalie continues to grow. For now, we will embrace the joy of having a fun and free summer. Followed by the start of Middle School and High School for Carter! I will probably need to focus all my energy on that, so being able to hold off surgery for a year or more, I will take it.
Thankfully, we still have all the amazing staff at Scottish Rite and our incredible nurse, Carrie. We got to hug and thank Dr. Richards. I just was not prepared going into the appointment with having to say goodbye to a man that has been a huge part of our life and helped Natalie out so much. It is weird and a little scary when you trust someone so much and then have to start over.
“For I know the plans I have for you, declares the Lord, plans to prosper you and not harm you, plans to give you a hope and a future” Jeremiah 29:11
God definitely has a plan for Natalie, one that I am thankful He is in control of. I had tried so hard over the past few months to not stress about her having back surgery this summer or trying to figure the best time for her to have the surgery, so she could enjoy summer, but not miss the beginning of middle school and there is no surgery.
I am sure God shakes His head at me, thinking, “Girl why do you stress yourself, you know I have this all worked out. We have been down this road so many times, I would think you have learned by now, but okay, you like to do things the hard way.”
So, that sums out our medical life the past few months. Side story, that is a little funny, because if you do not laugh, sometimes you might cry. Natalie’s school has a new nurse and they were testing the students for scoliosis, hearing and vision. You can see where this might be going. Things were probably pretty smooth sailing until my child walked in.
First up vision, Natalie wears glasses and was waiting for the new updated lens to come in. I am not sure how that all even went, but since she wears glasses, I am guessing the nurse knew we were on top of it.
Next up scoliosis test, the nurse asked Natalie to bend over so she could check her spine. Natalie nicely looked at the nurse and said she has scoliosis and has rods in her back. The nurses did not do anything, just moved right along with the next test.
The third test, oh yes, the hearing test. Natalie’s right ear is great! The left she obviously failed. The nurses seemed confused and wanted to test her on another machine, because she thought that one as broken. Natalie looks at this poor nurse and said she can’t hear in her left ear, but not to worry, she has a doctor for it! OMG, I felt so sorry for the nurse when Natalie was telling me this. Natalie then told me, she got pulled out of the class the next day to retest her hearing, but the nurse was absent. I quickly got the nurse’s email and send a message letting her know what all was going on, so Natalie would not have to undergo another hearing test.
I am so thankful Natalie always has such a good attitude about everything. Please do not get me wrong, we do have tears and some anxiety at times, but overall she is doing amazing.
