Grant and mom.jpg
Grant and mom.jpg 2012-01-20

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waiting for the tonsillectomy surgery
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happy now before the tonsillectomy
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getting ready for surgery
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the anesthesiologist made a video with Lydia's name in it...her watching
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after surgery
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after surgery
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grabbed a toy in recovery
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Lydia's award
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• NEW pictures- October

 

• A Thank you to all who have donated - visit the THANK YOU PAGE to see all the donations and wonderful peopel in our life

 

• A Health Update for Lydia

Lydia's Health in December

Lydia had her heart procedure on Friday, December 2nd.  Again, the procedure was to close up a hole she had in her heart that was putting pressure on other parts of her heart.  They also worried it could affect her respiratory status.  It hadn't yet but Dr.'s were being cautious.

 

I refer it as the day they went in and touched my baby's heart.  The procedure in total was 3 hours and she went under and came out just great.  She was transferred to ICU where they monitored her closely but didn't expect anything adverse to happen.  For about 2-3 hours after the procedure we were instructed to hold her leg down and very still.  The reason for this is they went through a blood vessel in her leg to close up the hole in her heart. They needed that hole to heal and not have her moving around.  She did well with a little sedation.  Lydia was released the next day and home and back to normal.  Amazing stuff what they do with the heart these days.  The device they put in to close up the hole they said would mesh in with her heart 'skin' within 6 months.  What a trooper!

 

During the month of December we had bouts of crying and Lydia being upset.  We weren't sure why but knew that her behavior had changed since October.  It seemed like as days past so did Lydia being uncomfortable.  On December 22nd after several hours of her being upset we took her into the ER however there wasn't anything they could do seeing they couldn't scope her tummy and check it out with her on blood thinners from her heart procedure.  We took her home without answers. 

 

Things continued this way for the holidays however with the hustle and bustle of a busy home and Christmas Lydia did great.  However, afterward she was hospitalized for 3 days as they tried to figure out as much as they could what was wrong.  She was "cleaned out" and did well while hospitalized but upon returning home didn't seem to be feeling well again. 

 

I had been thinking that maybe she couldn't eat dairy products.  Due to her esophagus problem which is mainly caused by a food issue - the main culprit being milk, I was wondering if milk was also irritating her tummy.  The Dr.'s were telling us no that she tested negative for a milk allergy, however something nagging inside me was saying that milk was causing her issues. Maybe a milk intolerance?  The day after she arrived home from the hospital I went to the local store and bought a ton of dairy free foods and almond milk to see how she would do.  Lydia has been awesome ever since.  We are so thrilled to say the least!

 

Gone are the days she seems upset and unable to soothe...she is happy, smiling, better and back to herself.  The hugs, butterfly kisses and love is abundant. She enjoys snuggling and you can even see more eye contact, better engagement and her back to being more physical with her enjoying walking while you hold her hands or even pulling up to tables herself to stand.  We love it and are glad the dairy free diet was the change she needed. 

 

Also during the month we went to a holistic Dr. to talk to them about helping her with natural products versus maybe some of the meds Lydia is on.  They provided us with some natural meds and we are trying that this month as well to assist Lydia. 

 

If you haven't already - check out our pictures from December.  All the kids are growing so fast and VERY active.  It makes for one busy household.  We are looking forward to 2012 and once again raising money for Children's. 

 

 

 

 

  

Lydia Walking DOWN the driveway

Check out Lydia using her walker on November 9th walking down our driveway.  A minute and 39 seconds to walk down it.  Amazing work Miss Lydia!

Lydia walking UP the driveway

This took a bit longer than walking down the driveway but Lydia was tired and was working hard.  Check her out - this proves that anything is possible. 

This winter we are going to get her a pass to the local YMCA in Lake Geneva and take her there a few times a week to help her continue gaining her endurance and this new found skill.