I know this road is hard. Trust me. But, some weeks are more emotionally draining then others. I know what we are in for, for the most part. I've googled and googled and earned the title of Dr. Mcgooglehopper. However, it doesn't matter what happens it still stings sometimes.
This week Riley received her MRI results, had her sedated hearing exam and yesterday Logan had his last day of preschool. I was certain I would cry picking him up but, I stayed strong for Logan because he asked me not to cry. He told me Wednesday night that it is okay that he is growing up and that he will always be my bubba.
We are so thankful for the 3 years that Logan had at Sonrise preschool. The community and family feeling that Logan and our family had was amazing. When Riley got sick they prayed for her , for us. When we had shirts made all of the teachers got one and wore them every Wednesday until Riley came home. Logan was able to see the support that Riley was getting and it comforted him. They let him pray for Riley with his friends everyday and held his hand at nap time when he would cry because he missed us. For 100 days Sonrise provided the normalcy Logan needed. Logan has also grown so much over the last 3 years and learned so much. We're so happy to have had the experience we did at Sonrise and look forward to seeing how Logan grows at Sonrise Kindergarten. Wednesday night I wanted so badly to explain to Logan that my tears would be of joy and happiness because of the little man he is becoming and some fear and trepidation on mommy's part by taking him from his familiar bubble and moving him on. But, I'll save that for another day and have faith in the fact that Logan has become my sweet, smart, loving and caring boy who is ready for the next chapter of his life. And... I'm fairly certain that I am not alone as a mom in feeling this way, which makes it easier.
Tuesday morning as I was heading out the door to take Logan to preschool the house phone rang. I don't know about you but, we really rarely answer our house phone. I mean if we look at the caller ID and recognize the number we will but, usually it's just another solicitation or some contractor wanting to remodel our house or put solar panels on our roof. As I walked towards the garage though I heard in the very robotic tone that is the caller ID lady House Institute. I quickly dropped my purse and picked up the phone. It was Dr. Goddard and he wanted to discuss Riley's MRI. I found a quiet place in the house a held my breath as he talked.
Dr. Goddard first wanted to make sure that we were aware that Riley has hydrocephalus. Which, yes we are. He then asked if she had a shunt. I said no. He left it at that but, his phone call has had me thinking and googling and reading medical research that some med student probably had to read last night for school. You know slides that really make zero sense to me but, I am trying! We've decided to take Riley to see another neurosurgeon for a consult on whether or not she needs a shunt. It's something my mom gut is telling me to do and something I have to do to be able to know I've done everything I should/can for Miss Riley. Neurosurgeons are on my list of people I'd really prefer not to have to see but, we'll suck it up for Riley. So we have a few recommendations and I'll be scheduling an appointment next week. Who knows how long it will take to get an appointment!
But, that wasn't really what his phone call was about. Once we got past the hydrocephalus part he gave me the greatest news I had heard in a while! The results of the MRI showed that Riley had no ossification in her ears. Zip, Zilch, Zero. I was pretty speechless. Now that we know this we just needed the sedated ABR to be completed and then we will be able to proceed with cochlear implants. Bilateral cochlear implants! Now it may sound silly to be excited about this but, if there had been ossification and depending on the severity Riley may have not been a candidate for the cochlear implants anymore. We would have reached the end of what we could do for Riley's hearing.
Early yesterday morning I loaded Riley up along with her nurse and we headed to CHOC for the sedated ABR. This test monitors brain wave activity in response to sounds. We've had this test done before and it was not very promising. It showed profound hearing loss.
We arrived at CHOC and were greeted with toys on Riley's bed and a personalized message from the child life specialist. It's the little touches that mean the most when your child has to go through any type of procedure. We waited around listening to Baby Einstein movies on the TV and they took Riley back around 9:30 for her procedure.
Dave met us at the hospital right after they took Riley back and we waited about an hour or so and then we were called in to meet with the audiologist. Deep down I was hoping for better news but, in reality knew what we would hear. Riley still has profound hearing loss and it is permanent. She needs the cochlear implants. Yes, we would have loved to hear that Riley's hearing had improved but, the reality is that if it had improved drastically it may have knocked her out of being a candidate for the CI's. Because ossification can occur at anytime and many years post bacterial meningitis even, it is important to us that she has the implants done. But, hearing profound and permanent when you are a parent hits you in the gut in a way that nothing else does. It makes me sad that something that came naturally to Riley is going to be something she has to fight hard for now.
I spoke with Riley's audiologist at House yesterday afternoon. She is working with Dr. Goddard and we have a tentative meeting with her next week. It's possible that Riley could have the CI surgery within the month. They don't mess around! I am thankful these implants exist and hopeful that they will be helpful for Riley. They don't guarantee that Riley will be able to hear. As her mom and as her dad we both feel like Riley does hear something. Whether or not she is able to process it right now is another story. There is no denying the fact that she looks our way when we speak and often wakes up when she hears daddy come home or her brothers playing. So now we pray and hope and remain as positive as possible about the fact that we are making the right decision for Riley.
Today Dave took Logan to his early 5 year old/Kindergarten check up while I took Riley to therapy. It's so wonderful to have a husband and father who really is a partner in this with me. Managing a household with 3 kids is hard enough but, the appointments and hectic schedule that come along with Riley's illness make it very hard for one person to get everything done! I also know that Logan enjoyed the one on one time with daddy! Logan is 46 inches tall and 51 lbs placing him in the 98/95th percentiles. He only had to have one shot and was very proud of the fact that he didn't shed a tear! Now, he's all ready for his first day of Kindergarten next week!
Tonight Logan is headed to his karate studio for movie night and taking along the car he built with Dave last night. It's a cardboard box that they made in to a car for the "drive in". Logan is really looking forward to it and we'll get to enjoy some one on one time with Mason and extra snuggle time with Riley before Logan gets home.
It goes without saying that our lives are crazy and chaotic and unpredictable right now. Through all of the chaos though we try to make our new normal as normal for all of us. Your prayers, support and notes mean the world and hold us up. They allow us the strength to hold Riley up and push her forward. And they remind us that sometimes it's okay to have a bad day or be emotional about something. At the end of the day though we always remember how thankful we are for Riley's presence in our family and how blessed we are to have 3 kiddos that bring us endless joy. (And make us want to pull our hair out sometimes :)!) Really that's what matters most!
Have a great weekend and Fight On!
Love,
Dave, Megan, Logan, Mason and Courageous Riley
Thanks for the update, and great news about the CI surgery. One day at a time, honey. You are a goddess.
ReplyDeleteI'm glad you had a good cry. We all need one sometimes! My fingers are crossed that they get Riley in for her CI surgery soon. In the meantime you just keep on keeping on. You're a rockstar mom. It really blows my mind. You have some lucky kiddos.
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