Hi All,

Happy Easter!  Sunday was a nice day for us until I cut Daniel’s hair and dressed him up in his Easter outfit.  He looked so good but was so cranky!  He finally took a nap and we were convinced that he would feel better after…but we were wrong.  As soon as his Easter clothes were taken off and he was in the “pool” he was all smiles.  Maybe he is really too much like his Daddy.  For those of you that might not know….when Justin was little he had some pictures taken on a special day (confirmation day).  The problem was that Grandma Joyce dressed him in a pink shirt and he did not like that.  Every picture of him, from that day, is of him frowning.  Maybe Daniel is not going to like the dressing up thing!  Daniel did look really great in his outfit and Jancee and I are going to try to re-dress the kids next week and take some pictures! 

We are getting ready for our trip.  On Friday I noticed that I had booked the wrong return flight home.  Instead of putting in the flight that transfers in Atlanta I had but in the JFK.  Going through JFK poses a couple of problems…more flight time for Daniel and more germ risk because of all of the people.  I called Delta and they were honestly very rude.  They wanted $200.00 to change both tickets.  I tried to explain the situation and I told them that these flights leave within minutes of each other in Santo Domingo.  It was not that we were trying to make an excuse to stay longer or come home earlier.  Anyway….our lovely friend, Marilyn, in Salt Lake City took care of the situation for us.  I do not know what we would do without her!!!

We are a little anxious about the trip but excited.  It is a long hard trip but we always come home knowing we are doing the right thing by taking Daniel there.  We are hopeful that the trip is safe……and we have tried to plan for anything that could possibly go wrong.  We really feel that this is a risk we should take!  Please pray for a safe trip for us!

Hope all is going well for everyone!  Thank you to everyone who reaches out to us each and every day!!!

Kisses,

Connie

Dear All,

Daniel is doing great.  He has been back to his baseline for a week now….meaning that he is off his bi-pap machine all day long and only uses it at night.  He has even napped without it and done very well.  He is such a happy little boy except he just learned that crying sometimes gets his way.  I have been trying to break him of this habit but at times it is even comical.  Daniel even pretends to cry to get you to come into his room and then he smiles big like “gotcha”. 

Abbee and Jancee came over Wednesday to give me a break.  He just loves spending time with them.  He fell asleep while Abbee was reading to him…..it was so cute.  Sometimes Jancee and I just let them sit together alone and you can hear them talking and jabbering….even though Daniel only knows a few words.  It is almost like they have big conversations that no one understands but them.  We have a really great picture of them…I just need Justin to load it on the computer and I will post it and other.

We have made plans to return to the Dominican Republic.  We are so nervous to make the trip yet excited to take Daniel back.  Not only are we excited about treatment but Daniel seems so comfortable there.  Everyone is so nice and we always feel at home.  Hopefully this time we will not have a tropical storm like last time.  Please pray that it is a successful but SAFE trip.  Delta here we come!

For those of you on the east coast, don’t forget about the event being held at Governor’s Comedy Club to benefit Daniel’s Hope Fund.  Joe Bonzi will be the lead comic that night and it should be great fun!  He is such a nice man so don’t hackle too much! (although we all know you will all be great at it!)  There is an event page posted here on our website.  Tickets are $20.00 and there is a two drink minimum.  Have a great time!  Justin, Daniel and I will be there in spirit!

I am posting a link to another good you tube video on stem cells.  It was sent to me by Karen from Research For Cure….they are big fundraisers for stem cell research that will benefit SMA children.  If you get a chance check out their website at www.researchforcure.org.  There is a great explanation of the upcoming human stem cell trials for SMA babies.  It is a great website in general.

Hope all is going well in your lives……please let us hear from you. 

Kisses,

Connie

Daniel is improving each and everyday.  He was off of his bi-pap for three trials yesterday (2 hrs, 1 ½ hrs and 2 hrs) and has already completed a 3 hour trial today.  He seems to have less congestion everyday.  We are still so thankful that we did not take him to the hospital.  Even though it has been a long, tiring two weeks we are so glad we tackled this at home.

I finally have some voice back.  I strained it some yesterday because I had so many calls to make.  There is so much going on the next couple of months and we have a lot of work to do.  We are hoping to take Daniel back to the DR for treatment.  We were hoping for a private flight to take us there but we might not have availability of that until May.  We are so scared to fly Daniel commercially but we feel we can do it at minimal risk with the right equipment.  We are ordering a battery that will work for the cough assist so that we can have access to it in flight.  We are also looking for a more streamline battery system for the bi-pap machine.  Going this month will depend on how fast we can get things shipped to us.  We might have to wait until April.

I will spend the day today working to get the word out about Daniel’s New York Fundraiser on April 6^th.  Uncle Dennis and Aunt Diane are hosting an event at Governors Comedy Club in Levittown on Long Island.  I am going to put a whole page up on the web site about it.  If anyone is interested in tickets please email or call us.  Tickets are $20.00 per person and there is a two drink minimum.  It should be a great night!  Check the website this afternoon for more detail.

Thank you notes are slowly getting done.  Thank you for being so patient.  We are so grateful for everything sent to us.  Your generosity and love is so overwhelming.

Wanted to put a big apology on the update to our niece, Jordyn.  I finally sent out your birthday present yesterday.  Aunt Connie is often late but not usually this late!  We love you! 

Please say prayers for Daniel’s little buddy, Owen.  He is in the same situation that Daniel was last summer.  We feel so much love for him and his family and hope that they are able to find peace in their situation soon.  We send our love and prayers to them!

Thank you to everyone who has posted on the guestbook.  We love hearing from everyone!

Keep watching for upcoming events for Daniel.  I am going to work hard on the web site this afternoon so that everyone has the information.

Much love to all,

Connie