It's Friday and the sun is out

Read at your own risk- I just read this post and some of the sentences are so long and poorly put together it's frightening. : )

Hurray for sunshine. I really wonder if I do have some degree of seasonal affective disorder. We've had- what is it- 5 or 6 straight days of rain. YUCK. I start feeling a little cranky after 2 days. Apparently I need sunshine. Yesterday I sent Tif a text that read "I have given myself a serious attitude adjustment. It is safe to come home. Sorry." True story. And then my sweet girl sent me one back that said "It's okay. We all have our moments. At least you didn't let it ruin your whole day!"

Yesterday Lila had her first private OT appointment at the therapy center. (Thank you, Medicaid) It's nice to have all 3 of her therapies at the same place, so we're familiar with Kelly, the OT. She's even given me advice before when one of the other therapists told her that Lila was having some sensory issues. She comes highly recommended and we are so happy that she made room for Lila in her busy schedule. Back to the appointment. When Kelly was working with Lila it became apparent to me that Lila's sensory issues are worse than I thought. After about 45 minutes Kelly said to me "We have a lot of work to do. I'll finish the assessment at the next appointment and then we'll talk about how often she should be seen for OT." I felt hot tears spring to my eyes. I knew that's what she was going to say- it was obvious to me and I don't know the first thing about OT. I said "I feel so bad. We've wanted to bring her in for OT- it's just that our insurance rolls PT and OT into one category and since she isn't walking yet we felt as if we should focus on PT and we can't afford to pay for it out-of-pocket." She immediately came over to me and said "Linda, this is going to be okay." I felt so stupid because I knew she had seen the tears in my eyes but at that moment I was so overwhelmed with guilt that we hadn't been doing enough for Lila. Ridiculous, really, but it's still how I felt at the moment. I know some of that pressure comes from within me because Lila's the only small child I have so it's the least I can do to make sure we're doing everything we can for her. But Kelly was very reassuring and Lila showed off her fine motor skills like a champion so it wasn't all bad. : )

This week our ENT appointment went so well. I had been very concerned because at some of our previous appointments he has acted as if it were no big deal that Lila was having so many ear infections. He wanted to take the "wait and see" approach. After the last visit with the NP, where she didn't see fluid but after the flat tympanogram she conceded that there was probably fluid in her ears, Lila was diagnosed with a double ear infection by our pediatrician. The pediatrician saw fluid and said that he couldn't be sure that it was a full-blown infection but neither of the eardrums looked normal. You can pretty much tell by Lila's actions when she has an ear infection and I think she did. This has become a very long story, hasn't it? So I began asking people for advice, asking for other recommended ENT's in the area, and by the time her appointment rolled around I had 3 back-up appointments just in case. But..... apparently our regular ENT had a change of heart? Change of opinion? An epiphany? I'm not sure what it was but he was a different person than we had previously seen. Obviously not an entirely different person but he was so pro-active! Let's schedule the appointment for tubes. She'll need the micro-tubes, they don't last as long, but we need to get a handle on these ear infections. This is a crucial time for her with speech and development. Really? That's what I've been saying! YAY! Then after reviewing our home sleep study he said that she definitely needs her adenoids removed and possibly her tonsils. He didn't even make us take her in for a supervised sleep study at the hospital. (I had actually gotten a prescription from our pediatrician for a sleep study just in case he wanted to take the "wait and see" approach in this area too but it turns out we won't be needing it.) He said that are tonsils are big but not huge. He is being conservative in this area but he convinced us that he's on the right track with this. She's going to have an x-ray which will help in his decision and will also show us if she has atlantoaxial instability, AAI. He said he might not make the decision on the tonsils until he's actually doing the procedure for the tubes and adenoids because the anesthetic will put Lila into a very deep sleep (obviously) and he'll be able to see how much the size of her tonsils are affecting her breathing. He said he doesn't want to take the tonsils out if it's not necessary but doesn't want to end up having to take them 2 years down the road either. Obviously the risk of complications and length of recovery time change drastically if he takes the tonsils too. Her surgery is scheduled for June 10th. She will miss the last week of school but maybe she'll feel well enough to go in on the last day to say goodbye to her teachers. I hate for her to miss the last week of school but if we didn't grab the last spot on that date we'd have to wait until the end of July for her surgery. We opted to have her miss school.

I'm going out to enjoy some sunshine. If I don't have time to post again this weekend, I hope you all have a Happy Mother's Day! I am so thankful to have this online community of support and love from other mothers traveling along the same path.



1 comment:

  1. Happy Mother's Day! I hope you had sunshine again today--and tomorrow as well. I know I could stock up on sunny days, we've had so many days of rain.

    I think it's great that your new OT is on top of the sensory issues. Please do not feel that you've let Lila down--she'll catch up just fine, and there was really nothing you could have done differently to get OT earlier, right? So, don't give yourself Mommy guilt--you managed to get her the waiver, didn't you? And now you're getting her the help that she needs.

    I'm glad that the ENT is going forward with the tubes. I don't know how large her tonsils are, but I do know that there is a large portion of the Ds population who does eventually need the T&A done. I wish I had been a little more proactive on this with Hannah. It would have been much easier to have the surgery done when she was younger. If the ENT doesn't go for it now, that's okay, but keep tabs on those tonsils yourself.

    Enjoy having time with your big kids too! I'm looking forward to having my big girl come home soon!