National Down syndrome Convention and pulmonologist

We found out the results from Madi's O2 challenge last week.........she failed miserably.  They would like her o2 saturation levels to be above 90% at least 90% of the time.  Well, she was below 90% - 33% of the time.  Ouch!

I knew that she was not going to pass, though.  We did the test for 2 nights in a row and I went into her room several times throughout the night to check the monitor and saw that her levels were about 87%.  I had the alarm on the monitor set to go off at 86%, and I definitely heard it several times.

So, the next step in this ballgame is to see a pulmonologist.  Since she no longer has the pulmonary hypertension, there is something else that is causing her oxygen levels to drop.  We just don't know what yet.  So, next week we will be heading off to Children's Hospital to see yet another specialist.

I am hoping that maybe she just has sleep apnea or something.  Maybe her adenoids or tonsils are large and are causing her levels to drop when she lays down.  I don't know.......it's just very frustrating.

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Mark and I are headed to San Antonio in a couple of weeks for the National Down syndrome Convention!!  I am really excited to be going to this.  One of the sessions I am most excited about is the pre-conference sessions we are attending about speech therapy.  I am anxious to learn as much as I can to help her to be able to communicate.  I really feel like if she is able to speak clearly, it will help her get that much further in whatever she wants to do with her life.

I have to admit, though, that I also have some anxiety about going to the convention too.  We will have the pleasure of being in the company of many people with Down syndrome........various ages will be represented.  I am nervous to see some of the older people with Ds.  What if I encounter someone who is not doing very well? And I guess you can ask "what's considered doing well"?

I have so many dreams and aspirations for BOTH of my girls.  And really, just because Madi has Ds, my dreams for her have not changed.  I fully expect her to reach her highest potential.  She will not get any slack.  I will not allow her to use the excuse that she can't do something because she has Ds.  I really believe that if I do not have high expectations of her, she will not reach her full potential.  (This is true of any person, whether they have Ds or not!)

So.....when I ask the question, "What's considered doing well?"  What if I meet an adult with Ds that isn't able to communicate?  What if this person is not able to live outside of the home of their parents at the age of 30?  What if this person is not able to have a job?  What if this person has never had a romantic relationship?

These are some of my fears that I have for Madi.  I don't know......maybe you can say I have not fully come to accept her diagnosis of Down syndrome.  I feel like I have......but maybe I truly have not.

I try to live each day as only today.  I try to not get too worked up about what Madi is going to be able to do in a year.  Or 5 years.  Or 20 years.  But, when I go to this convention.......I am going to be forced to face it.  And that scares the living s**t out of me!!!

I don't want to have to think about the possibility that Madi will be 30 years old and living at home!

I am hoping that I will get there and if anything, be inspired by how GREAT everyone is doing!!  I do know that the actress from Glee (can't think of her name) that has Ds will be speaking.......which is awesome!!!!  I can't wait to hear her speak......she is a true inspiration!!!!

Putting aside my fears.......I think the convention is going to be amazing!!!  I am excited to walk around to all the different vendors and exhibits to find any nifty tools and tricks to use to help Madi.  And most of all, I am excited to listen to all the different speakers.  I need to figure out what sessions I want to attend and which ones are most relevant to where we are at with Madi's age.

Okay......how can you not be absolutely in love with that little face!?!?  She fell asleep in my arms this afternoon......those are moments that I cherish!