Hip X-Ray Results, Sleep Study and Early Intervention Update

A lot going on after the semi-quiet summer – ha! Siena was a trooper last week!  On Thursday she had her appointment with Early Intervention and we decided to take Physical Therapy down from every other week to once a month, this was recommended by Liz, Siena’s PT.  At this point, Siena’s “homework” remains the same and our main goal is for her to walk… we will likely move forward with the Sure Steps {http://www.surestep.net/} at Liz’s next appointment with Siena, which is on Monday.  More PT might be needed once Siena is actually walking.  Along with the Special Instruction with Donna that Siena is getting for speech development, Deb, Siena’s OT will be working more with her on tongue and mouth stimulation to help with her speech as well.  We may add a Speech Therapist if needed down the road, but at this point feel we have a great team.  In the last week Siena has become a lot more aware of her tongue, so we are trying to get her to lick her lips and strengthen her muscles in her mouth.  Today was OT and Deb worked with Siena on learning to put her arms up and to help with dressing.  Siena did really well with this, especially with some deep pressure and stimulation to her arms before asking her to put them in the air.  Siena tried to put her shirt on over head by herself and pulled her arms through when putting it on and off.  Very exciting to see!  We see Deb every other week, and she will be bringing a special vibrating toothbrush for Siena at her next visit.

Siena did well at her Sleep Study last Thursday.  She was such a sweetheart while they put the wires on her and wrapped her in gauze so she wouldn’t pull the wires off.  It was such a sorry sight to see her like that, but I think it was harder on mom than on baby :). She certainly didn’t like the nose tube, but I am sure I wouldn’t either!  The women at the lab loved her and one woman looked back at me as she was walking out of the room and says, “some people are just so lucky”….. hmmm, I thought, I didn’t feel particularly lucky at the moment, but definitely gave me something to sleep on…:)  Siena slept pretty well, and we were sent home around 8:30 the next morning.  Results will probably be back in another week or so.  Praying for good results!

Siena had her flu shot and Hep A vaccine on Tuesday this week, she only cried a little and has not had any reactions from them as far as I can tell.  Tuesday was also a big day for big sister, Isla, as she started nursery school – she “loved” it!  Who would have guessed it – haha!!

Siena’s hip x-ray results came back this week and is not wonderful news, but not much has changed since her x-rays taken in March.  There is a continued delay in bone development in both hips.  SP and frog-leg lateral views of the pelvis demonstrated absence of the ossification centers of the proximal femurs.  The acetabular angles are not normal.  They will do another x-ray in 6- months but we will talk to the Endocrinologist about this next month to see if there are recommendations for any other specialists…. I will also be contacting Dr. Miller about these results.

Next appointment is PT next week…..

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2 thoughts on “Hip X-Ray Results, Sleep Study and Early Intervention Update

  1. That picture of her at her sleep study was pretty hard on Papa also. And we are lucky to have her because we have all grown from the experience.

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