Monday morning catch-up

I feel like I've been running around in circles for over a week. The pinched nerve in my back has actually been diagnosed as Lumbar Radiculitis. Sounds a little crazy, I know. Ridiculous. The actual definition of radiculitis: Radiculitis is a type of pain that radiates down and along the sciatic nerve. And boy does it hurt. Thankfully it has gotten better. I've actually slept in my own bed for the past 3 nights, instead of sleeping on the physical therapy table in Lila's playroom. Things are definitely looking up. I'm currently on steroids, hydrocodone at night, and Aleve during the day. The doctor wants me to go for physical therapy 2 times a week for 4 weeks but I'm thinking about trying acupuncture instead. I'll decide by the end of the day. So there's the update on that. I feel like I haven't blogged in forever- I keep getting e-mails, text messages and FB messages asking what's going on with me. Sorry I've been so unresponsive.

As for my breast sono, I went for the test last Wednesday. After the tech was finished she went out to consult with the doctor. I fell sound asleep on the table. (That's where I got the idea to sleep on Lila's PT table.) When the tech came back in she asked why my doctor hadn't ordered everything that they had requested. Obviously I had no idea what she was talking about so the look on my face must have been a look of total confusion. She said that they had asked for a breast sono AND a follow-up mammogram to be ordered but only the sono was on the paperwork. I was still half asleep and told her it was probably because he doesn't pay attention. ( We seriously need to find a new family doctor- this is about the 7th major thing he has dropped the ball on. I won't go into all that because this post would be a total doctor-bashing.) So they called his office and I waited for approval to be granted for a follow-up mammogram. I have my regularly scheduled mammogram done at another office and they wanted everything on file at their practice- made sense to me. I had another mammo done and was sent to wait yet again. At this point I'm feeling a little nervous- okay, a lot nervous. Why do they need all these different views? Different tests? Is this really bad? How will I take care of Lila if I have to have surgery and/or go through chemo? Will I live? God- surely you wouldn't do that- I have to take care of Lila! So, yeah, sitting and waiting and waiting and waiting I had WWWAAAAYYYY too much time to think. Turns out the reason they needed all of the tests/views wasn't bad at all. The two spots that showed up on the MRI weren't showing up on the sono or the mammo. Apparently they are too small to be seen on either of those tests, or they aren't there at all. They want me to have another MRI in 6 months. I'm taking this as totally good news. Thanks for all of your prayers, messages and phone calls. I definitely felt the love. : )

In the midst of all this, I got another yeast infection. Funny, huh? A yeast infection while I was on the no-yeast diet. My yeast infection wasn't directly related to the no-yeast diet, but the diet was tugging away at my already weakened immune system. Apparently it was too drastic for me. I am currently on the South Beach diet- I am determined to shed this extra weight.

Lila and her daddy went to New York to visit his parents last Thursday. The Easter weekend trip is a tradition for us- on Good Friday we make "Easter pies" with Nick's parents and his cousins Jim and Jen. I absolutely love all of it- we have so much fun making the pies and after we're finished Nick's sister, brother and their families usually come over and we eat pizza and hang out. I was sorry to miss the trip but I knew that it wasn't a good idea for me to go with my pinched nerve causing so much pain. The trip is 5 hours each way so it probably would not have been pleasant for me. Lila and Nick had a lot of fun and I'm glad they went even though I missed them so much. Wow- this house was so quiet with just Tiffani and me here. Before they left I was packing up all of Lila's vitamins/supplements. Nick asked how he was going to remember it all so I wrote it down for him. On the first night they were there when Nick called I asked if he had remembered to give her the afternoon zinc and Ambrotose- a nutritional supplement that she's on. He said- "Oh yeah, I remembered. And I went ahead and gave her all 3 vitamins, all 3 DHA gummies and the rest of the zinc. I was scared I would forget so I just got it all over with at once. " Charming, isn't he?

Okay, I promise I'm almost finished- if you're still with me. Lila had an ENT appointment last Thursday before she left with her daddy for NY. At our last visit with the pediatrician, I was concerned about an ear infection but it's so hard to tell with her. She's ALWAYS congested, no matter what we do. She constantly chews on her fingers whether she's teething or not. She has never grabbed her ears., she just gets cranky. So anyway, he looked in her ears. Right ear clear. Left ear- can't tell- too much wax to see but the wax is too far in and he's not going to attempt to clear it out. He asked me if we had an ENT visit scheduled anytime soon. As a matter of fact, yes. Within a week. He told me to have the ENT clean her ears, check the left ear for fluid and check out her tonsils as they are enlarged. So we went to the ENT with the following concerns:

Chronic congestion
Possible infection in left ear
Speech sounds different within the last 3 weeks- sounds like she's not hearing clearly
Interrupted sleep patterns- doesn't seem like she actually stops breathing, there's just a lull
Enlarged tonsils

We actually had an appointment with a nurse practitioner- we didn't want to wait 6 weeks to see the ENT. The NP cleaned Lila's ears, then looked in both of them- didn't see any fluid but it's hard to see because Lila's ear canals are so incredibly small. Typical for kids with DS, so no big deal. She looked in Lila's throat- agreed that her tonsils and considerably large. Probably adding to the congestion issues. We also discussed Lila's sleep interruption- she instructed us to do a home video of Lila sleeping. From that video it will be decide whether or not we need to do a sleep study. She sent us back to the audiologist for a tympanometry- where they place the soft plug into the ear to test for eardrum movement. Lila sat with her daddy and was perfectly still for the test- miracle. Right ear- no response. Left ear- no response. The audiologist looked puzzled, changed the tip on her instrument and tried again. Still no response from either ear. I asked what this meant. She asked if Lila's ever had a hearing test- yes- 5 of them to be exact. 1 of them right here in your office. She's never had any hearing issues? No. Again I asked what this meant. She asked us to wait in the waiting room, that she needed to talk to the NP. We wait, she came out and told us that the test results made sense because the NP couldn't be sure whether or not there was fluid present because she couldn't see that well. Really? I said well, based on the test results, do you think she has an infection? Should we be concerned? Should she be on antibiotics? No, just follow up with the ENT in 3 weeks. Doesn't make much sense to me but we are keeping a close eye on her for signs of infection- like crankiness. Then last night Tiffani and I were trying to get a video of her singing "He's got the whole world in His hands". It's so cute and I will keep trying to get it on video. As soon as she sees the camera she stops singing. So instead of singing we were trying to get her to do animal sounds and signs. I was asking her what a dog says and she kept quacking like a duck. Obviously those sounds are close to one another but she's never gotten them confused before- and after I got closer to her and said "dog" more loudly she made the dog sign and sound. This all makes me a bit nervous- the NP said that we could be facing tonsil & adenoid removal along with tube placement in both ears sooner than later. We'll find out more when we see the ENT on May 4th.

This has certainly been a long post. I hope you all had a Happy Easter- we certainly did.

Have a fabulous day~

Linda