Thursday, May 06, 2010

Cleft team evaluations

So today was the big day we have been waiting for. Our day started with the alarm going off at 5:30am. That would be bad enough if Chloe hadn’t been up 8 times during the night, but she was. I think there were 5 diaper changes too and once having her in bed with us. But at least we knew today we’d be able to get some answers on why our baby girl was having so many problems with her little ears.

After our appointment and a quick trip to the pharmacy for an RX, I spent about 2 hours on the phone with different departments at Children’s Hospital making sure they were going to do everything they said they were going to for Chloe. Let’s just say that the ENT group doesn’t feel the need to cooperate with the rest of the groups. Little did they know who they were dealing with. Me. In the end, we all agreed that my way and wishes will be easiest on everyone. And the best for Chloe. So beside the drama and aggrevation scheduling everything went well. Here’s the scoop on the girls.

Cassie’s evaluation:

Teeth look great, no cavities either. The dentist believes that Cassie shouldn’t have any issues with her teeth as she grows. Her eye tooth on the top left – where her cleft lip was – is sideways but that’s very minor. Her bite is also very good. We are still waiting on Cassie’s 2-year molars to start coming in – but we still have lots of time for that to happen. We also scheduled a cleaning for Cassie at the dentist’s office around the corner from the hospital for early June. It’s more to get her started on learning to trust the dentist and let them brush her teeth. I wish them all the luck with that one. :)

Cassie’s hearing is excellent, no fluid or pressure in her ears.

We do need to schedule a speech evaluation for Cassie. The woman in charge of that will be calling me.

The cleft surgeon wants to see Cassie in 6-months to check on how her lip is growing to determine if we might do her lip revision early. She sometimes bites her lip on that side because it’s a little thick on the inside. Still very minor issues there too. I made that appointment for early November.

This is pretty much what we expected with Cassie. So there were no surprises.

Chloe’s evaluation:

Chloe has one cavity in a bottom 1-year molar. We weren’t surprised at all on this as Chloe came to us eating hard candy and in all the update pictures we got of Chloe while waiting for her she was eating snacks. I’m just thankful it was only one cavity. She has a split in her gum – near the cleft – and an eye tooth is coming in there. The dentist can feel the two bottom eye teeth, so other than waiting on her 2-year molars there’s no concern right now – just watch and wait. The dentist will be able to fill her cavity when her ear tubes are done so there will be less trauma for her.

The next stop was for a hearing check. I already knew Chloe was having trouble hearing. Between the fluid issues, ear infections, being a cleft baby, and me having to speak loudly to her sometimes for her to hear me. Right now Chloe has moderate to severe hearing loss in both ears. She has pressure and fluid in both ears. There is so much fluid that her ear drums are not moving at all. Not even with air forced against it by the doctor. She needs tubes – no big surprise there. We also have some Nasonex to use until surgery to try and dry some of the fluid up. Chloe will see another ENT on May 17th for another evaluation and then have that same ENT do her tubes on Friday May 21st. They also ordered a hearing test for her once the tubes are in and while she is still under to determine what she can hear. This test will tell us if Chloe has any permanent hearing loss. The worst case is – meaning the removal of the fluid from her ears does nothing for her hearing – Chloe would need hearing aids to assisting her in hearing better. I’m thankful we know the worst case as I think it’s always good to know what you are up against, but I really think we are going to get great news after that test. Then watch out world because Chloe will know what’s like to hear ‘normal’ for the first time in her life. She’s already such a happy, easygoing girl – this should make her extremely pleased. During this surgery/procedure she’ll also have her cavity filled.

Chloe also needs a speech evaluation but she needs her tubes in first. That also means Cassie will be waiting on her evaluation too so that I can take them both in at the same time.

Chloe’s lip and palate look great so we have no follow up’s for either of those right now. I think we need just yearly visits for her with the cleft surgeon for that.

As with Cassie, no real surprises with Chloe’s evaluation.

Now we just look forward to the 21st when Chloe’s quality of life will dramatically change for the better. And so will life for all of us as we’ll get to see what Chloe’s like when she’s healthy, can hear, can walk 3 feet without falling and can sleep at night. She’s going to add more life to our already lively little family.

The simple things are all we are after here. You forget sometimes how important the simple things are when you don’t have them. God has truly blessed Sonny and I with magnificent girls. Everyday they teach us what’s important in life.

I’ll keep everyone posted as we learn more. Please say a prayer for Chloe as we need God to take her under His wing and heal her like only He can do.


3peas1pod said...

Good news!!! Sending prayers your way for sweet Chloe.

Melissa said...

So glad you got the diagnosis and now can move forward and get your baby girl healing and hearing. I will keep Chloe and all of you in my prayer and thoughts.

Dana said...

Wow have you been busy! Sounds like things will be on track soon. Ear tubes were wonderful for my son. They make such a big difference, you'll see:) Hugs and kisses from Makenna to both of your girls! Have a great Mother's Day this weekend!!!

Heather Hale said...

I'm so happy for you to get some information. As I think I told you before, we go for Emmalyne's eval on May 27th. I'll let you know what I find out.

Michele M said...

All sounds like good news. Things are moving in the right directions. I'm sure once Chloe has the ear tubes things will improve by leaps and bounds.

groovy mama said...

Busy family you are....Sounds like things are pretty good! hoping Chloe gets on track with her ears!