Pirate patch again

How is it possible to leave our appointments with more questions than answers every single time? This week Elin had a behavioral hearing test. It is the type of test where you sit in a sound proof room and they condition the child to look at a toy when he/she hears a sound. It usually works with babies that are at a developmental age of 9 months  Elin isn't there yet and knew that going into the test but it was still worth a try. It didn't work and even though I knew she wouldn't be able to do it, the fact she couldn't still felt like a slap across the face. When she was in the hospital they told us her myelin sheathing was at about a 3-4 month level. This means when she was 7 nearly 8 months old her developmental level was closer to a 4 month old. Now- watching her progress with her language and motor skills it all makes sense and she is about 4 months behind.



The importance of the behavioral hearing test is to measure Elin's perceived sound. These results are usually different from the BAER test results and give us a better idea of what Elin can actually hear. But we can't get the results of this test until Elin is developmentally ready to be conditioned to take the test. We have a hearing loss clinic follow up on Elin's birthday in late July and we will attempt the behavioral test again. If she still can't do it- we might have to sedate her and get a BAER result again so we can monitor her hearing loss. An
interesting question was raised during this process however. Since the only hearing tests we have been able to do with Elin are brain stem testing does her partial agenesis of her corpus collosum have any interference in the results. The answer is.... wait for it...... they DON"T know. So we told the audiologist that Elin seems to hear us fairly well without her hearing aids in. I cited some examples like- she always knows when we enter her room, she wakes up every morning with Myles (crazy early), Anya often wakes her up without creating too much racket, she understands what I tell her in the bath tub, etc. Given our observations, and the uncertainty that her hearing test are totally accurate, the audiologist "turned down" her hearing aids a little.
I have my fingers crossed that when Elin can take the behavioral hearing test we find out what her levels of hearing loss actually are and I so hope she can do it on her birthday.

The other appointment we had this week was with the ophthalmologist  He checks her eyes every 6 weeks or so to make sure they aren't weakening from the crossing issue. Last time all was fine, but this time he thinks her right eye is getting a bit "lazy" and letting her left eye become dominant. That's right folks- we are back to patching lefty to make righty stronger. This time Elin is older and lets us know she doesn't like her eye being patched. So much so she ripped the patch right off today (which is no small feet for her given her motor control issues). So this may be a long 6 weeks ahead of us.

The ophthalmologist is being cautious and prefers to do the eye surgery to correct the crossing while Elin has to be sedated for any other procedures  We had the green light on "no sedation necessary" from the neurologists and geneticists but now with the possibility of having to sedate her for a hearing test after she is 1 we will wait. He assures me that the crossing is not in fact adding to delay of her motor skills nor will it worsen with time. So we wait again and hopefully she can be developmentally ready and take the behavioral hearing test and we can skip the sedated hearing test altogether. If that's the case then we will move forward with Elin's eye surgery at that time. If not, we will try to coordinate the two procedures so she will only have to be sedated once. Phew- that's a lot of stuff for one week.

PT is going well. Elin's sitting is coming along but her tummy time still poses a problem. She doesn't want to be up on her elbows which is the only way you can really roll over your arm. She tries her darnedest to roll over her arms flayed back and at her side. One of these days, pure will is going to hoist her over that arm and she will just roll over the "wrong" way.

Elin had a high fever for nearly week and I took her to the doctor because she didn't have any accompanying symptoms  Sure enough after the doctor visit, Elin's fever broke and she broke out in a rash. Roseola- same thing Anya had when she was 9 months old. Oh yeah- Anya had a febrile seizure when she had her bout with Roseola so perhaps Elin's anti seizure meds helped her avoid that scary seizure.

When the weather was nice we all had some lovely days outside. Elin took to sitting in the lady bug chair and napping under the sun umbrella. She also had a lot of time with family enjoying the outdoors.

Making Lemonade

We've been handed a few lemons this year BUT with a baby as sweet as Elin we can only make lemonade. She is such a love- I can't even explain. You really have to experience her to understand. She is so generous in her joy it is infectious. When you hold Elin and she looks into your eyes, you know she is connecting with you. I can't express how special her gummy grin makes me feel. We are the lucky ones and I know it every time I hold my baby girl. Whatever lemons this universe has in store for us down the road cannot possibly sour my love for her. I'm a goner and she has a firm grasp on my heart.