Someone turned 1 !!!!!!!!!!!!!!!!!!

Where did the time go?  It seemed like just yesterday we were holding my precious baby girl.  This year has gone by so fast, it seems even faster than Omar's first year.  Reyna had come so far from that low tone infant that had problems nursing to a now 13mo old, I'm a little behind on my blogging, who never stays in one place for more than a minute.  She is sitting up on her own and this she did a week before her birthday.  Sitting-up was something we were constantly working on with her.  In Washington, D.C. she also began sitting from a lying position and that was huge.  It was like she knew we had set that goal and she was going to master it by her birthday.  As of now Reyna is doing her own version of army crawling and its successful because it gets her where she want's to go.  As practice we will put her down about 5 or 6 feet away from her toys that way she has to figure out how to get there.  She is also a climbing machine, anything or anyone sitting on the floor its game on.  You have now just become Reyna's personal climbing toy.  She has also started pulling herself up to standing at the couch and on us.  A couple times she even let go, but wasn't able to keep her balance and she fell.  She has accomplished so many goals and we are so proud of her determination, we know that by christmas she will be crawling and hopefully not too far after that she should start walking.

1st taste of cake

Health updates:

I think she liked it

At Reyna's 12mo appointment she was still trucking along the growth chart as she should and is gaining that appropriate amount of weight.  So we shifted her from formula to whole milk, she did the transition seamlessly and is doing great.  At her 12mo appointment they did routine thyroid tests and it turns out that Reyna has subclinical hypothryroidism, which is very common in those with DS.  Her free T4 levels were within normal range but her TSH (Thyroid Stimulating Hormone) level was significantly higher than normal range.  So she was immediately started on 50 mcg of levothyroxine (synthroid) to help.  We never saw any signs and symptoms of hypothyroid which are constipation, fatigue, weight gain (more than normal) to name a few.  This last week she had both her annual hearing test and an appointment with her endocrinologist Dr. Prakasam.  During her hearing test they tried to assess her hearing behaviorly but she wasn't able to be conditioned to the test and the audiologist thinks this is partly because of her delay in development.  They continued to do a Otoacoustic emissions (OAE) testing indicated present OAE's bilaterally for the majority of the frequencies (pitches) tested. This is consistent with normal/near normal outer hair cell function (in the cochlea (sensory organ for hearing)).  This is a good indication that she hears well, however this test alone does not rule out hearing loss. For instance, she can have a mild hearing loss and still pass the OAE test.  So she suggested to also have Auditory Brainstem Response (ABR) evaluation.  To do this Reyna would need to be sedated.  I have referred to our pediatrician who will let me know what she thinks.  It seems that all persons with DS have some type of hearing loss and the degree isn't consistent it all is determined by how much fluid is in the ear canal and I have been told by Reyna's pediatrician and the audiologist that Reyna has small ear tubes.  I don't know exactly how this contributed to hearing and the fluid that may or may not accumulate in her ears but its definitely something that I will be asking the next time I see her pediatrician.  This week Reyna also got to meet her endocrinologist Dr. Prakasam.  I have worked with him before at work, and he is very nice as are the other doctors in his group.  He went through the signs and symptoms of subclinical hypothyroidism and the levothyroxine.  He said that he wanted to see Reyna in 3 months, since she had just started the levothyroxine and wanted labs drawn 2 weeks prior to the appointment to assess if the dosage needs to be changed.  He let me know that most children are on 50 mcg of levothyroxine and didn't think we would need to change it but that is why labs need to be drawn.  He also linked me up to her chart in his office which I like because I can have access to everything they do.  

Other than those health changes, her therapists are amazed with her progress, some hadn't seen her since before she was sitting up and it was a huge change for them.  We have our annual review in October with everyone, teacher, speech therapist, occupational therapist, nurse, and sight teacher.  At that meeting we make new goals for next year and see how many other goals we set for Reyna initially she has met and if she hasn't met any of those goals how can we help her achieve them. We are so greatful to everyone that has help us in this past year.  It was a tough one getting used to all her appointments and therapy but we did it and now we are prepared for next year.  Reyna is showing us that with determination and a little guidance you can accomplish anything.  Just think about 20 years ago medical professionals were telling parents of babies with DS that their children will never walk or talk and that they need to be institutionalized, boy were they wrong.  Reyna is blooming in this household as are those babies, children and adults with DS in this world.

Birthday Girl

 Here's to another year of adventures!!