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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smiley before the surgery
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on the way up to 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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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.

• Our progress on the walk

• NEW VIDEOS OF LYDIA WALKING IN HER WALKER!  A MUST SEE!

• NEW pictures- September, October & November

• 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 the kids, most importantly Lydia

Our progress on the walk

Lydia was not able to make it to her walk and run in September but we had a full team full of supporters.  We were blessed with a beautiful day as we embarked upon our 3 or 5 mile walk or 5 mile run.  At the end of the walk we thank Scott & Paula Blume as they donated tastey ground beef and cooked up some fantastic burgers for our team.  We couldn't have asked for a better event, better team and better supporters. 

In total this year we raised just shy of $4500 with most of it through social media and grass roots marketing.  It was an amazing effort with most of our donations coming in the last few weeks of the fundraising efforts.  Once again the donation benefits the special needs department Lydia and just under 200 kids are a part of.  THANK YOU!

For a full list of folks that donated, please visit the Thank you page.

 

September/October/November Health Update 

Lydia had her tonsils out the middle of September.  She ended up with strep a bit before the surgery solidifying all the more while we were doing this.  During the time she was under they would also do a upper GI scope, a hearing test and an echocardiagram to check the hole in her heart.  She did wonderfully and after almost 3 hours we were able to see her.  Upon her waking she saw her toy on the end of the bed, sat up, quick grabbed it and was playing.  She seemed to be recovering well.  We were inpatient one day and went home the next day.

 

As mentioned they did a hearing test and the found that due to the holes not closing from her tubes that she does have what is caused conductive hearing loss in one ear.  If she proves not to need tubes in the future they will patch this hole up and she should hear better.  However, we will wait and see what that ear health looks like.  The other ear also has some hearing loss but not related to tubes.  She has 2 very high pitches she can't hear and they now want to monitor her to see if her hearing loss progresses.  Hearing loss is indicative of her syndrome so we fully expected this might come up. 

 

Less than a week after the tonsillectomy Lydia seemed to decline. Sally had been sleeping by her crib in her room to make sure she was getting her pain medication every 4 hours.  Wednesday morning Lydia was found shaking violently in her crib.  Unsure if this was a seizure we tried to hook up machines and it seemed to take forever.  Her stats were fine (oxygen and heart rate) at the time of hook up but she was still shaking with her lips turning blue and she was foaming at the mouth.  At one point her heart rate spiked very high but then it came down a minute or so later.  Worried we called 911 and the ambulance came and she went to Burlington Hospital.  She was fine and calm at the hospital but had a fever of 105.  The Children's Hospital transport team came to get her and she was evaluated overnight. They believe because she is on seizure medicine she had what is called a 'break through seizure'  - a seizure but not a full grand mal seizure.  They increased her seizure meds slightly after that visit. 

 

After about 2 weeks Lydia seemed to be recovering well but her sleeping was very erratic. She would wake up at 2:30 AM screaming and yelling.  She wasn't sleeping well and we weren't sure what was wrong.  On Devin's 7th birthday (October 7th) Lydia was taken in to check her out (throat, ears, bowels).  She even had an xray to see if she was backed up.  All looked good.  However, the yelling at night continued and she wasn't getting a good night's sleep. 

 

In mid-October we went to cardiology to review the echocardiagram.  They had called shortly after the surgery seeming urgent about us getting in.  We went and we were told Lydia's hole has still not decreased and based on the enlargement of 2 parts of her heart along with the risk of it affecting her respiratory system they suggested we close the hole immediately.  And when they said immediately they meant within the next 8 weeks.  They called the next week and her procedure was scheduled for Friday, December 2nd.  They will go through one of the blood vessels in her leg and they will go up to her heart to close the hole.  If everything goes well we will be one night inpatient and be able to go home Saturday.  Before her procedure she was required to see the dentist which she did a week or so ago - she was given a clean bill of health in that regards!  yah Lydia!

 

In early November we went back to neurology and they feel confident the increase in meds is not causing her sleep disturbance. We have been working with Children's for several weeks now in trying to figure out what is going with Lydia's GI system.  She is constantly burping and has been since March but most recently she is tooting too.  Not pleasant and she has to feel uncomfortable.  Maybe that is what is waking her.  They put her on a medicine for bacterial overgrowth in the gut however that only helped the tooting (or what we think did).  Now they put her on another medicine for a yeast infection. Seeing she takes an oral steroid for her Esonophiliac Esophagitis it can cause yeast infections so we are trying that out. The burping still continues and I have a feeling we'll need to rescope her to see what is REALLY going on. 

 

Last week Lydia saw a sleep medicine physician.  Until we can figure out what is wrong with her gut we need to at least get her sleeping.  Sleep disturbances do come with the syndrome so for now we need to help her get her some rest.  She is often up very early yelling and screaming and therefore exhausted during the day.  Not good for anyone in the house, especially her.  They did give her a medicine to help her rest and they scheduled a sleep study for just 3 days before Christmas on December 22nd.  She will have a ph probe also placed in her esophagus to measure her ph study to see if her ph is high at night causing her pain.  So...more to come on that.

 

For now, please include Lydia in your prayers for this week, Friday December 2nd. That is a big procedure and we are nervous for her.  Praying God is watching over her once again to make sure the Dr.'s and nurses are guided as they close up her hole. 

  

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