Daniel's Hope
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With my Daddy!!!

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On the salt flats with my friends, Abbee, Tylee and Jayden!


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With Abbee!

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I'm Back!

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Bed Head!

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Monday, December 8, 2008

Daniel becomes a scuba diver!

Every time I update I feel that I need to say “sorry it took so long.”  As usual the last couple of months have been crazy.  As some of you know, we moved to Vermont in October.  Moving cross country with a child who is ill is very challenging. 

 

Vermont is beautiful!  Daniel and I were very blessed that we had Daddy to ourselves for two whole weeks.  We have had a bit more normalcy here as we have taken Daniel out a little more.  We visited a petting zoo at Wellwood Orchards….twice.  He loves it so much.  The goats are a bit aggressive and tried to steal Daniel’s Kissing Elmo.   Kissing Elmo is very special because it is the first toy that Daniel has ever chosen….on his own. It was a hard decision because he had choose between Cookie Monster and Elmo  (ANOTHER Elmo).  Elmo won in the end because it kisses and Daniel loves kisses!

 

We have been spending tons of time with family as Grandpa and Grandma has been here a couple of times and Grannie Annie came in for almost two months.  It is nice because Aunt Dawn, Heather and Melody live only 45 minutes away.  Melody was able to come up to spend Halloween with a quick session of trick or treating in Chester.  Daniel was a scuba diver and Mel was a robot.  Her costume was great and everyone commented on how cool she looked.  She worked with Keith (Aunt Dawn’s boyfriend) for two months making this costume! 

 

Daniel has been doing well.  We managed to make it through our first cold of the season.  We will probably be pretty sequestered for the next few months.  Daniel already has really great services here with a new physical therapist, speech therapist, nutritionist and a really great social worker who makes my life so much easier.   He also has a great pediatrician (but misses Dr. Heidi and Jennifer)!  Daniel has been spending time in his stander and we posted a video of him in it.  We wheeled him down to his room so that he could check it out at a different vantage point.  He loved it!  He also goes in his “pool” almost every night. 

 

Justin’s job keeps him running and us managing an appointment book.  He has varied shifts so we literally have to look at each day/week to know what shifts he has.  He loves all of the things he is learning but states that he misses family medicine!  For you Wendover patients…I know he misses his interactions with you!

 

We lost my Uncle Wayland (Uncle Pee-Wee to me) in an automobile accident.  It happened on my birthday and I am still really hurt that I could not go home.  Justin and I both sat and told each other our “Uncle Pee-Wee” story….Justin said that his fondest memory (Justin and I spent two nights at their house a few years ago) was on a drive to see Aunt Sue in Odessa.  He was touched that Uncle Wayland saw a cotton field and pulled over.  He took Justin (the New York City boy) out into the field to show him how cotton grows and showed him how to pick a bowl!  Justin loved it and cherishes this memory.  As for me I loved every minute I ever spent with Uncle Wayland but fondly remember spending one week during the summer shifting through dirt looking for a diamond earring that Marta lost in the front yard.  He wanted so very badly to find it for her!  So loving and caring!  He will be so missed.  The next time Justin has a three day weekend I am going to go see Aunt Ann.  I cannot imagine the pain she is in as she and Uncle Wayland were literally the PERFECT couple.  No two people could ever love each other so much.  Please pray for my family to find peace during this unbelievably hard time. 

 

I have posted some new pictures.  Hopefully you will be able to see them well.  Please let us hear from you guys!  I promise to update again soon!

 

Kisses,

 

Connie

 

 

8:56 pm mst 


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Daniel did very well on our trip to the Dominican Republic.  It was a long trip there and back but he was a trooper.  We did need the oxygen in flight so we are so greatful to Rich from Bennett Medical Services in Elko for loaning us the oxygen concentrator.  A very big THANKS goes out to Marilyn and her co-workers at Delta Airlines here in Salt Lake City.  Marilyn made our trip so much easier and sent us away with so much love and support.  She was also here to meet us as we flew back into Salt Lake City.  Marilyn's mother, Kathleen, made Daniel a special "jungle themed" quilt.  Daniel loves it!  As you can see by his pictures with Marilyn, he just loves her!

We met two other families while in the
Dominican Republic who were there for treatment.  Pictured here are Mathew and his parents, Neal and Susie.  They were so friendly and helpful!  We hope that we see them again soon!

Daniel's treatment session went well.  Daddy was allowed to start his IV, which I am sure made Daniel feel a bit safer.  We were allowed to lie with him in the hospital bed and the whole procedure only took a couple of hours.  The clinic staff was wonderful, especially Dr. Rader and his wife Debra.  We could have not asked for a better experience.  It is a little early to see improvements or progress but we have noticed some extra movement in Daniel's legs.  We try to get him into the pool as much as possible since he is able to move a bit easier there.  As you can see from the pictures, he loves the going to the pool!

We encourage all to write to us for more information regarding his treatment.  We try to answer emails as fast as possible! 



*Please check out "Daniel's Pics" page for pictures of his trip*