Hi All,

Just a quick update.  We keep having ups and downs with Daniel.  As soon as you feel everything is getting better...he gets plugs or becomes too tired.  He is doing well overall but all reminds us how it is a SLOW game and that we must be patient with his healing. We are still grateful that he is not in the hospital but we are tired!  Please keep praying that we can continue to keep this up.  Daniel was in great spirits today...singing and talking about Dada!  He really misses his Daddy when he is at work!

I am still having times fo feeling great and then feeling bad.  I am now on an offical 24 hour rest with my voice....no wishpers even...so that things can heal.  Those of you that know me know how really hard it is for me not to try to talk. 

Justin is back at work.  He comes home everyday and devotes all of his off time to Daniel.  I am not sure how he does it.....I think his love for Daniel continues to give him the drive to work so hard. 

Keep up the great thoughts and good prayers.  We are so overwhelmed by everyone's love!

Connie

Daniel seems to be doing much better.  He is still on his bi-pap except for brief trials off for a couple of times per day. We try to use the schedules they used in the hospital last summer to guide us.  He has been very playful and fun except for when we do treatment.  He is just simply not into it….I don’t blame him.  He woke up at 4:30 this morning saying “movie….movie” so I let him watch one.  I am usually very strict about him not watching in the middle of the night but since he has been sleeping so much I decided to let him get up early.  We are hoping to take him into his “pool” tomorrow night so that he can get some aqua therapy.  He did enjoy a nice back rub from Daddy last night while off of his bi-pap.  He was in heaven…..he is so our child!!!

 

Justin went back to work Friday and Saturday.  He is scheduled off tomorrow but not still sure what he is going to do.  I am still sick and get tired easily.  I STILL have no voice but seem to want to get out more (went to the store twice this weekend).

 

Monday is usually a day for me to make calls….but with no voice maybe I might just get all of the thank you notes out!

 

Thank you for all of the good thoughts and prayers!

 

Much love to all,

 

Connie

Daniel seems to be doing a bit better.  We had a rough afternoon yesterday but he improved overnight.  We are still doing treatments around the clock but I think that Justin will try to go back to work tomorrow.  It will all depend on how things go tonight.

 

We were awoken this morning by a 6.0 earthquake.  It seemed really strong and really long.  Justin ran to Daniel’s room and threw himself over Daniel to shield him from any possible flying objects…..fatherly instinct, I think.  Daniel and Greenbean slept through the whole thing but it scared Sunshine so much she fell off her perch!  There was no reported damage here in West Wendover but there was tons of damage 40 miles away in Wells. 

 

Thank you for all of the good thoughts and prayers!  Keep them coming!!!  We are so thankful that we have not had to take him to Salt Lake City.  He has been sick enough to be hospitalized but we have been working (especially Justin) so hard to get him well here at home. 

 

Still no voice….Justin must be lovin’ this!

 

Best to all,

 

Connie

Hi All,

Daniel has been sick with a respiratory illness for the past three or four days.  It has been very crazy here.  We are now doing 5-6 treatments per day instead of the usual 2.  We are trying VERY hard to keep him out of the hospital because there are so many RSV patients in the PICU right now. I feel that Justin and I have been working very well together to tackle this illness but each day gets a little more trying.   

 

I also have the same ugly cold.  I literally have no voice right now (which is probably a really nice treat for Justin) and I am feeling especially tired.

 

Justin has been home this whole week which is a great relief for me.  The clinic has been so good to us!  They always seem to find a way reschedule things to let him be here with Daniel. 

 

Once again, we ask for many prayers and positive thoughts!  Daniel has been in pretty good spirits despite being so miserable.  We pray that we can be strong enough to continue to take care of him!  We pray that he recovers soon!

 

We will update the blog as often as we can! 

 

Connie

Hi All,

 

Today Daniel is 18 months old.  It has almost been a year since Daniel was diagnosed with SMA.  We feel very blessed that he is doing so well and we hope that he continues to be strong and respiratory infection free. We will have very mixed emotions this month…happy that we have Daniel in our life but sad that this terrible disease has invaded his body!  Daniel smiles and laughs through all of his days but we can see small bouts of frustration when he cannot do certain things.  Please keep praying that he will be with us a good, long while!  He is such a love and joy and has taught all of us so much! 

 

We just traveled to South Lake Tahoe for a medical conference and it was the first time he traveled extensively in his new wheelchair.  He did very well and was more patient than Justin and I was with the long, boring drive.  We had such a great time and the break was very welcomed!

 

Daniel has two new top teeth.  We were told that he might never have any other teeth come in since he has a feeding tube, so we were pleasantly surprised.  Justin works with Daniel’s mouth (stretching and cleaning) every night and it seems that the hard work is paying off.  He looks so cute!  I will try to get some pictures of them this week. 

 

Daniel has also learned a new word….movie…and says it when we need to start or change his DVD.  We are so happy to have a new word and we run with praise each time he uses it.  He now says Dada and Mama (his version of Mama) all the time.  He is very vocal and lets us know when he needs anything!

 

I was able to have some respite time this last month.  Jancee and Abbee are coming over on Wednesday mornings to spend time with Daniel.  They sing, read and play for a couple of hours.  Daniel has such a great time and loves both Jancee and Abbee (especially Abbee so much!)

 

There is so much fundraising going on for us in New York.  Grandpa and Grandma put up jars at their gym, Bell Plaza Sports Club in Bayside, Lulu’s Bakery in Fresh Meadows and at a bar in Manhattan.  Aunt Lorraine took a jar to Gino Pizzeria in Flushing.  Thank you to all who contributed to Daniel’s Hope Fund!  We appreciate that you feel so much love for our baby!

 

Uncle Dennis and Aunt Diane are hosting a benefit for Daniel on Sunday, April 6^th at Governor’s Comedy Cabaret and Restaurant in Levitown, NY.  Show starts at 7:30pm.  Tickets are $20.00 and there is a two drink minimum. Tickets must be purchased in advance, so please email us if you want to attend.  It should be a great show.  It is said that all of the great comics have played at Governor’s.  Please check out their website at www.govs.com.  Grandpa Lou and Grandma Joyce will be in attendance.  We wish we could be there as well!  We will definitely be there in spirit!

 

Thank you all for so much love and support……we appreciate all that you have done to support our family for the last year!  We have great HOPE for the year to come! 

Much love and tons of kisses,

 

Connie