Gama and Papa pics

Here are a few pictures we took with gama and papa.  They didn't turn out like I had hoped but they were both just really tired and uncooperative.

Annual Schwab Christmas Party

Today we did our Christmas exchange with my side of the family.  We all had a real good time. I  got to meet my new 4 legged niece Aspen.  I am in love with her.  She is such a cutie pie.  

Here is Kevin coloring with Nathan and Adryan.  They look so cute there together.

Here are the kids opening their presents.  They had so much fun opening them, and loved all the things they received.

The 2 men in my life.  

 Love Jordan's face.  She was so excited about her new Princess Castle and toys.  And she LOVED all her new Bubble Guppie toys.

 Bryan got a John Deere clock that was made by Pete.  Pete is this sweet older man we see at this restaurant we like to go to all the time.  He does great work.  He actually made Jordan a owl for her bedroom awhile back.

 My little man with his Scentsy Monkey.  It's one of his new favorite toys.

 My beautiful Niece Adryan.

 My gorgeous Daughter.

 And the 3 of them together.

We all had a great time.  Now I have to find a place in the house for all these new toys :)

Jordan's Progress!!!!

Jordan saw the Infectious Disease (ID) doctor on November 29th.  She seems really nice and listened to all my concerns.  She ordered a lot of blood work to check everything it could possibly be with Jordan always sick all the time.  I had to take Jordan down to Children’s the following day because they could not draw all the blood needed the day before.  After 6 pokes (total in 2 days) they finally got enough to test everything.  (Lesson learn, only take her to Children’s for blood work)  We should have those results at her next appointment, which is the 27th.   I hope we get the answers we need.  This poor little girl has been through way too much already.

On December 4^th, I called Dr. Frattarelli’s office and told them about her not eating and how much she threw up the day before.  I am really concerned.  Jan from the office called me back and said I can get her in to see GI right now in Southfield if I can make it.  Of course I jumped on it.  Picked Jordan up from grandma and papa’s house and headed to Southfield.  I met with Dr. Madani (Nathan seen him back in the day) He listened to everything and stated he really believes she has Reflux.  He is starting her on Prevacid.  She will get 2.5ml before breakfast and before dinner.  He says give it 2 weeks and if she's not better they want to do a scope.  I hope this works. She can’t keep going on the way she’s been going.  Fingers crossed!!!

I spoke with the ID doctor on Friday to let her know we seen GI and that they believe it’s Reflux.  She also believes all the “colds” Jordan has had is due to the Reflux as well.  She stated that Jordan’s body is working non stop to fight the Reflux, that when a virus attacks her body ignores it to continue to fight the Reflux, making her sick, and staying sick for a long time.  She said once the medicine starts to work and controls the Reflux, if Jordan is to get a virus the body will then fight the virus, because it’s not dealing with the Reflux.  That makes a lot of sense if you think about it.

We started the Prevacid Wednesday night, and finally by Saturday we noticed a HUGE change.  She was able to eat 3 meals, no gagging or throwing up.  Sunday was even better.  She ate all 3 meals.  For dinner she had 1 chicken leg, mashed potatoes and gravy and macaroni and cheese, She never gagged and kept it down.  She was even eyeballing my food like she wanted it.  I don’t want to overload her belly so we are taking it slow.  I am cautiously excited.  I hope this keeps working for her.

She is at Laura’s today. (The Sitter)  Laura text me about half hour after breakfast and said she ate 1 cup of oatmeal.  No gagging or throwing up.  Yay!!!!  I am taking this day-by-day and slowly re-introducing food she loved.  We will see what the days bring.

Her upcoming appointments are:

Speech and Swallow Evaluation: 12/14/12

ID: 12/27/12

Genetics: 01/03/13

Neuro: 01/29/13

GI: 02/21/13

She is also continuing PT and OT: Mon & Wed for 1 hour and 30 min a day and PT/OT Fridays for an hour with Tote.

TOTE Christmas

Jordan gets therapy on Friday's through the TOTE program, and today they had their holiday get together.  We got there kind of late since we were coming from her PT/OT in Westland.  But we did manage to get a picture of the kids with Santa.

Everyone has commented that they were shocked Jordan didn't scream or cry with Santa.  I just tell them she's just exhausted since she just came from an hour and a half of therapy.  I am sure if she was wide awake she would have been throwing a fit.

Mary Denny Field Trip

Nathan had a school field trip where they went to the bakery and toured the place to see where all the goodies are made.  Kevin went with him, and said he had a real good time.  They were able to decorate their own cake before they left.

Here is Nathan all dressed up ready to make a cake!!!!

 And here he goes.  He did a great job!!!!!

 And he even bought mommy a bumpy brownie.  Yummy!!!  It was really good.!!

Here is Nathan's master piece all done!!  I think he has a gifted talent :)

Jordan seeing Dr. Frattarelli Again

Jordan is still not doing well with eating.  I'm lucky if I can get at least 2 pancakes a day in her. She has already lost about 2-3 pounds since August.  She's 20lbs 6 ozs) I took her to the doctor today because she seems to be sick again. (We were there for 3 hours) They did an xray to make sure she wasn't getting the start of pneumonia, which she's not. But he did put her on a round of antibiotics to kick out whatever's been lingering. On that note, he thinks she has an immune deficiency. We see the infectious disease (ID) doctor on the 29th.

For the eating issue he said it could be a number of things. 1st: she could have reflux and it hurts to eat (same as Nathan had) or some kids develop the fear of choking and when she swallows, it may hurt.  So now she also has to see GI and have a swallow test done with another specialist. Swallow evaluation is December 14th. As for GI, they can't get her in until Feb 21st. I'm Livid!!! She said if I have her doctor write a letter advising his concerns and fax it to them she might be able to get an earlier appointment.  I said "What? She won't eat, that's pretty concerning don't you think?" So I called doctor, and the referral lady Jan she said she would have the doctor get a letter faxed over. Now I am waiting to hear back if she can get in sooner. 

I wish my poor baby would just get better.  I hate seeing her in pain.  She doesn't deserve this.

Jordan's Sleep Study

Jordan had her sleep study overnight last night.  It was NOT what I expected.  They had her hooked up everywhere.  It was so hard to see.  They are checking to make sure her breathing doesn't slow down, or stop when she sleeps.  They say kids with Hypotonia, sometimes have issues with breathing.

Here she is before they hooked her up.  She is so tired and just wants to sleep.

The tech came in and started hooking her up.  Poor thing was so exhausted and cried so much that half way through fell asleep for the rest of the hook up.  She woke up and started screaming/crying and throwing up when they put the stuff up her nose and in her mouth (one was a recorder of some kind and the other was for oxygen.  That was the hardest part.  Poor thing could not have her pacifier and she looked so uncomfortable.  Here is out poor baby all hooked up.  It's still hard to look at this picture.  It breaks my heart.

She slept fairly OK.  Me on the other hand, I didn't get any sleep.  I kept checking on her to make sure she was pulling on any cords.  And when she was restless, the seahorse helped a lot when she heard the music.  So I would push it on every 5-10 minutes or so.  I am glad this night is over and hopefully she will not need another one.