If it’s true that hiccups mean your growing. Lydia should is getting bigger all of the time. We had another hiccup this morning. Her schedule got moved around and she had an appointment with an audiologist before getting her IV. I was surprised to find out that she has mild to moderate hearing loss, with a flat tympanic membrane. I felt like I had the wind was knocked out of me. Really, this not a terrible thing. We knew the risks of her chemo and radiation. This was one of them. We would rather have a baby free of cancer that was completely deaf than the alternative of course.
Her tests showed that she has fluid in her ears. We will take her to an ENT to clear her up, then retest her. The frustrating thing is that this hasn’t ended. I really would LOVE to put all that she has been through behind us. But in reality, she will be tested for years to make sure her body is working correctly. Aaaaggggghhhhh! (I am a little upset if you can’t tell.)
It is possible that her hearing will be significantly better after the fluid is removed, so yea. It is also neat that her favorite DVD’s are Signing Time. I don’t practice it nearly enough. I know a lot of signs now, but feel stupid and awkward when I use them. It is lack of practice.
So after her hearing test we hustled over to clinic 8 for her IV. We only had an hour to get her triaged, the IV placed, IVIG started. I felt rushed and like time was against us.
The IV therapist that we have used in the past was not available, so one of our sweet nurses agreed to try. Our nurses are all such sweet angels. They give and love unconditionally. Lydia’s veins are tiny and spider vein like. They are also way down deep. After many tears and an unsuccessful attempt, we decided to come back on Monday morning – first thing-yikes! We are scheduled to have the IV therapist bring a vein finding machine to get it started.
Because, it was all so stressful, we will wait and do her bloodwork on Monday too. Please keep praying. Hopefully her liver panel will all be back to normal too.
Thanks so much,
Liz
February 6, 2009 at 8:25 pm
I have known several very happy succesful people with significant hearing loss and know that such a life is fully possible for Miss Lydia as well. I know that you want her to perfect in every way but she is perfect in God’s way and we can learn so much from her sweet disposition despite all she has endured in her short life.
So I trust that all will turn out just as it is meant to; even while praying that what is meant to be is infection-free and hearing-full.
February 7, 2009 at 3:11 pm
Just wanted to send you some love today! Hang in there with the BabySigns. YOU and Lydia will enjoy the communication so much. I did BabySigns with both Hannah Claire and Rhianna. Now HC is trying to teach Rhi. Can you get the boys to join in on the action? Having them do the sign for eat and drink, would be a huge help alone. Not to mention it gives them a chance to “Help”!
Lots of love to your family today, Shari D.
February 7, 2009 at 8:58 pm
Hi Liz,
I am thinking of you. I share the feeling of wishing it would just all be really over, but knowing that years of scans and tests are ahead of us. I am so happy that Abby is through with chemo, yet in a way anxious about what scans will say in 3 months, you know? I would love to get together when you can so all the kids could play. Call me when you can!
Love you,
Amy
February 8, 2009 at 8:51 pm
Hi Liz,
Know you are in my prayers tonight, along with sweet Lydia, and I’ll be thinking of you in the morning when you go for her bloodwork and IVIG.
We love you all,
Jennifer
February 9, 2009 at 9:07 am
Hi Liz,
I can imagine how stressful this is for you… but I wanted to let you know that *I* was in the exact same boat as Miss Lydia hearing-wise. When the doctors checked my hearing when I was a toddler, I had only 40% in one ear and not that much more in the other.
I had tubes in my ears two times in the next 5 years, and I now have perfectly normal hearing. Good hearing, even.
I think there’s reason to hope that Lydia’s will do the same.
Christine
February 9, 2009 at 3:06 pm
Amber, Where did you get so much wisdom? Thank you for such a sweet reminder of God’s tender mercy.
Shari, Glad to hear from you across the sea. We have encouraged singing with signs, but will work on them helping by using simple signs.
Amy, I am so glad that Abby continues to improve. She is such a gift. You are in our prayers right now during your appointment.
Jennifer, Thank you for your sweet prayers. God is always listening and reacting to our faithfulness to Him.
Christine, Thank you for sharing your story. That is very encouraging.
I hope you all are doing well. I miss seeing you all, but am so thankful that you are still in our lives.