Ivey Update

Update:

The past two weeks have been full of appointments. Last week on Wednesday alone Ivey had three appointments. She went to her BEGIN class at the Center for the Visually Impaired (CVI). One of our main goals is to encourage Ivey to reach out beyond her comfort zone. Pretend that Ivey is in a little cylinder and beyond that is a strange land for her. We want her to become comfortable and trusting that she can explore away from her body. So when playing or interacting with Ivey, let her become secure with you. Then you can encourage her to reach out to objects or toys - guide her as you do so. If you know Ivey, she loves to play with long hair, rub scruffy faces and chew on everything attached to her (bids, shirt sleeves, tubes or socks), we want her to feel or hear something new and be curious enough to 'find' it.

Her prosthesis were also enlarged by her ocularist. Now her little eyes fit better and for the time she is having a hard time getting them out by herself. So for a day or so we were back with the conformers. I forgot how different they make her look and how they attract attention for others to look too. I also discovered that her pinching skill has refined itself since her last set of conformers. She had no problem pinching the stem of the conformers, pulling them out and placing them in her mouth to chew on like a piece of gum. Talk about your choking hazards. But she is back with her beautiful green prosthesis now....again, the ocularist mailed them to me. Eventually those things are going to wind up in the wrong mailbox - what a surprise that will be.

Wednesday morning of last week Ivey had another seizure. More than likely this was just a break-through seizure. She is down to the lowest doses on her phenobarb, which we are weening her off of, and apparently she had gained a little weight, so a seizure managed to get through. Wednesday her neurologist squeezed her in for a look-see. All is well and we upped her other seizure medication.

So, Stacy thanks for sticking it out with us on such a long day! I don't know what I would do with out you! And thank you Lauren, Allison and Shelia for helping me with the boys. Life savers!

Then....on Thursday of last week, the next day, we drove back to Atlanta for an appointment with her cranio-facial surgeon. This was just a follow-up to check her left eye from the procedure this past January. Looks great. Eye fits better. However, he is wondering about an other little issue that MIGHT be a concern with her skull. We are being proactive and checking things out. Therefore, a CT scan is being scheduled for her little head. I will give you more detail if something were to come out of this; in the meantime, say a little prayer that her skull is okay.

Now on to this week. There was only one appointment in Atlanta. Ivey had a follow up with her ENT (Ear-Nose-Throat). She was scheduled to have an ABR hearing screen on her left ear. The ABR performed in January needed to be repeated because of fluid and swelling in the ear. The physician would like to try and get an accurate as possible reading on her ear(s) to know exactly what ranges Ivey can hear. Well, unknowing to me, her left tube was plugged and fluid was behind her ear. It was a no go for the ABR on the left ear. After a round of antibiotics hopefully we can try again. More than likely she will need to be sedated the next time.

We did test her right ear again. Her right ear seemed to do well; however, not as well as we would hope for. The audiologist did put us in the booth to see how Ivey responds to sound. It was eery to hear the sounds that Ivey can hear(and probably not as well as I can hear) and to watch her not respond to sounds that I can hear. It was like being punched in the stomach when I could hear a sound that she could not. All of this has a good and bad side to it. Now I have a better idea of what sounds Ivey can take in and those she can not. This will help me to adjust my voice and activities if possible. For example, Ivey probably can not hear me when I whisper to someone or hear me (you) if we are talking normally in another room. She also probably can not hear birds chirping. THIS WAS ALL BASED ON HER REACTION TO TESTING HER RIGHT EAR. She did not respond to any sound when we were testing her left ear in the booth. She is NOT deaf in her left; it has much more hearing loss than the right- as far as we can tell right now. So, once we get an accurate ABR screen, then Ivey can get hearing aids adjusted specifically for her hearing loss in both ears.

Well, that is our Ivey update for now. She is still doing great. She has a smile on her face and playing with her brothers. Next week is Knox's birthday, so we are all looking forward to that big milestone. I just ask that you all look at some of Ivey's specific concerns and say a little prayer for her. Ask that we all have the strength for whatever might come our way.
Gwen