All About Madi.....

We have had so much going on and I have enough to write about for several days......but today, this post is going to be all about Madi.

First off, there are a TON of photos!  And, they are all from one shooting.  To be honest with you, I totally forgot that I had taken them.  They are from one day when Mark was feeding Madi.  The love you see in each other's eyes is amazing!

Okay, here goes.

We have had a couple of set backs with Madi lately. (this is why I have all the wonderful pictures of Madi......to offset the negativity of this post!)

We see an Oral Motor Therapist for Madi about every 6-8 weeks.  She's not a therapist we see on a regular basis but we have these "consults" with her every couple of months.  Well, Madi has been doing AWESOME eating.  She loves to feed herself finger food!  We even fed her steak, zuchinni and garlic bread one night last week!  She LOVED it!!

When we met with her Oral Motor Therapist, she was concerned about how much tongue thrusting Madi is doing when she eats.  Basically what Madi is doing:  she doesn't have the tongue strength and control to push the food back for her to swallow.  She has good tongue lateralization (side to side) but not to the back.  So, the way she compensates is by thrusting her tongue out and scraping the food back with her gums to swallow.  I have noticed that she was thrusting her tongue out but I wasn't concerned about it.  I figured she was just still working on figuring out how to eat.

So, to correct the tongue thrust Madi is doing.........we are back to puree's.  And to make it even worse, we are giving it to her with a syringe.  Yes, you read that right......a syringe!  We stick a small amount from the syringe into the back of her mouth...between her gum and tongue.  She is forced to use her tongue muscles to push it back to swallow.  As she gets better with it, we increase the amount we place back there.  Once she has perfected that, we will move forward a little bit more.  And then, a little bit more.  Until we are just placing the puree at the tip of her tongue and she has to move the food back with her tongue muscles, not by scraping.

Sounds exhausting and overwhelming, right?!?!  It is.  It takes a LONG time to feed her.  And we are supposed to do this 3 times a day.

So, needless to say, I am feeling a little discouraged.  I feel like we were doing sooooo well with the food.  She ate all kinds of textures, flavors, super spicy, bumpy, smooth, etc.  And now we are back to square one.

So, that's the first thing that has me down.

The second............we got the sleep study results back.  Madi does have moderate sleep apnea.  During the study, she completely stopped breathing an average of 6.7 times an hour and an additional partial stops of breathing 30 times an hour.

We were able to get into the ENT today.  He was the ENT that had read all the data from the study to produce the results.

The appt. was set for 2:30.  We were ushered back into the room.  We then proceeded to sit there until 4:00 before the doctor came in.  And that was only because I left the room to find out what was going on.  That time is usually Madi's nap time and she had reached her expiration time.  And so had I.  I couldn't bounce her around to keep her calm anymore.  I couldn't stare at the same walls anymore.

He rushed in, stuck the probe down her nose.  Couldn't even get it in on one side because she is, of course, sick again.  He basically said that the reason she is so congested is because of her small nasal passage ways and that I am not keeping her nasal passages cleared up enough.  Really?!?!  I suck the snot out of her nose probably 30-50 times a day.  There are many mornings that I have done it 10 times before I have even fed her breakfast.  So, I don't know how much more I can do it.  He said her tonsils are fine, but will probably need them taken out at some point down the road.

He then gave me a prescription for a steroid nasal spray, said to come back in 3-4 weeks and he rushed out.

That was the appointment.

I never had a chance to discuss with him her reflux.  Which, by the way, is obviously still bothering her. I never really understood what exactly is causing her sleep apnea.  It's kind of scary that my daughter stops breathing during the night but he didn't take the time to tell me why.

I also feel like I am just supposed to accept that my daughter is going to be sick 6 months out of the year.  I know that because of the Ds she has small nasal passages, so when she gets sick, it is harder for her to get rid of it.  And she has a weak immune system, so she picks up every single bug her sister brings home.

But, I just CAN'T accept this.  When Madi is sick (like she has been for basically 2 1/2 months now), she does not have any energy.  She does not smile a whole lot.  It is hard for her to have the energy to engage in interaction because she is using every ounce of energy to breathe through the congestion.  She doesn't sleep well.  She doesn't look well.  She's not the bubbly happy little baby that I had over the summer.

I am going to give this doctor another chance.  He really is a great doctor!  He has a great reputation!  Maybe I just caught him on a bad day.  I will do one thing, though.......I will be one of the first appointments in the morning.  I won't do this afternoon thing and then sit there because he's backed up.

I apologize for the negativity of this post.  I have some great ones coming!  We have been having some great fun here and I can't wait to share it!!!!