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Tuesday, August 28, 2007
Daniel is doing much better!Daniel is doing
so much better! It has been a slow road but we feel good about his progress. This morning
he was able to stay off of his bi-pap for 5 hours. We have yet to go out to the real world but hopefully
he will get to attend an event being held in his honor this Saturday. The Wendover Community Clinic (where
Daddy works) is hosting a yard and bake sale this Saturday for Daniel. The local newspaper The Wendover
Times did a story about Daniel and we have created flyers to put up all over town and that were faxed to several businesses.
The clinic has been taking donations of things to sale and lots of people have pledged to bake. We
hope to have a great day that is not too hot! In the last few months there have been several events hosted to make money
for Daniel’s Hope Fund. I hope to have some time this weekend to update the Thanks page and to add
some new photos. Daniel has been a bit sad over the last couple of days. Grannie
Annie went home. She had been with us for over two months. I try to practice “give
me five” with him but I am not sure it is the same when Mommy does it. He will get to talk to her
everyday but I am certain that he misses her so much. Grandma Joyce will be here in a couple of weeks. He will love to
see her! Have a great week everyone!
Connie
Monday, August 20, 2007
Daniel Is Finally Home!!!!Daniel
was released from the hospital yesterday. We felt that he would improve best at home. He
is so happy to be here and just smiled when he realized where he was!!! He slept the whole night in his
new home hospital bed and has already stayed off his bi-pap for a longer period of time than at the hospital.
He is recovering at a slow pace but seems stronger everyday. Our friends Jancee
and Abbee stopped by for a quick visit today! Daniel was so happy to see both….especially Abbee
who was Daniel’s first friend ever. Just like last time, we will never be able to fully thank everyone for the love and support during
this last hospital stay. Everyone in the PICU (Pediatric Intensive Care Unit) loves Daniel so much and
gives their all when caring for him. Staff would often stop by to just visit with Daniel…even if
they were not working with him on that particular day. Daniel received such great care while at Primary
Children’s Hospital…..we could never think of taking him anywhere else! Special thanks to
Julie (Daniel’s favorite nurse), Corey, Kristen Print, Sue, Deb, Dr. Michelle, Kristen, Courtney, Sarah, Tracey and
Kelly. Huge “shout out” to the whole respiratory therapy team who always gets to do all of
the rough work without as many smiles from Daniel. Daniel wanted me to say to the RT’s….”kiss,
love you guys….but get out of here!!!” Huge….Huge…Huge THANKS to the Palliative
Care Team for coming by everyday and for arranging for Daniel to see the therapy dog! Thanks Marianne for
his new favorite stuffed dog! He sleeps with it everyday and practices his barking while holding it! Daniel
had some really great roommates while hospitalized. He especially loved Sara because she was always so
kind and caring with him! Thank you for the great “Dog” crib toy! He loves
it! Thanks to everyone for the great birthday cards and presents
for Daniel! Special Note…. The staff at the Wendover
Community Clinic is hosting a garage and bake sale to benefit Daniel’s Fund on September 1st.
The sale will be held in the clinic parking lot and all proceeds will go to Daniel’s Fund. If
anyone has donations please either drop them off at the clinic or email us! The sale starts at 9am!
We will try to update again soon! As you may imagine it is hard to go from 24-hour
care to just us caring for Daniel. So grateful that my mom is here to cook for us…..Justin would
probably be eating Boston Market frozen dinners if Annie wasn’t working so hard! Much love and kisses to you all……will try to update the “Thanks” page tomorrow! Connie
Thursday, August 16, 2007
Hospitalization UpdateHello all,
Daniel did not come home as we expected last week.
Doctors wanted to keep him for a bit longer to attempt to wean him slowly off the BiPAP so that he can have quality time off
the machine. They are working to help build his respiratory endurance.
Meanwhile Daniel is taking full advantage
by continuing to flirt with the pretty nurses that visit him round the clock (even from different areas of the hospital).
He learned some new words and sounds while at the hospital: "Hello", Hi, "woof, woof"-At the stuffed dog
animals. Granny Anne decided to buy him a portable DVD player. It is attached to his bed side and enjoys his favorite Baby
Einstein's.
Families of SMA was kind enough to loan us an assistive stroller for Daniel. This will make positioning
him easier and provide additional support and comfort for him.
Daddy can not wait for him to come home. Daddy has
been slaving long hours over the stove without mommy. Cooking T.V. dinners in the microwave is so time consuming! Daddy only
shrunk 2 shirts and turned his white undershirts and underpants red just one time learning how to do laundry again without
mommy! He's doing pretty good! :)
Thanks to all for the great support...We will keep you updated.
Love,
Justin
11:41 am mdt
Thursday, August 9, 2007
HospitalizationDaniel continues to improve each day. He is all smiles again and is loving all
the attention that he gets from all of the nurses and RT's. This may be a major problem when we take him home but he can
sleep with mom and dad anytime.
Daniel still has quite a bit of chest congestion but everyday it becomes less and
less. RT's continue to give Daniel vest treatments and cough assist every 4 hours. He is slowly becoming stronger and
is continuing to gain much needed weight since his G-tube placement.
Mommy is staying at the Ronald McDonald House
with Granny Anne in Salt Lake City while daddy is seeing patients in West Wendover. Daddy misses Daniel the most but will
take off for the hospital on Friday after work and stay through Sunday.
Thanks so much to everyone who sent Daniel
Birthday cards. He had a terrific Birthday thanks to all of you. We sat down and read and showed him each card, he loved each
one of them. The ICU staff all came to sign a big card posted on his door and helped themselves to some cookies. What a special
day and milestone for Daniel.
We hope Daniel will be home very soon.
-Justin
12:47 am mdt
Friday, August 3, 2007
Hospitalization number TwoThanks to all for your kind Birthday wishes for Daniel. He loves every card that he receives.
Unfortunately Daniel came down with another
respiratory infection 3-4 days ago and was admitted again to Primary Children’s in SLC, UT on the 2nd. We have both
been working feverishly at home to prevent this hospitalization (round the clock cough assist, vest therapy, and suctioning)
but finally became too exhausted to continue treatment without more help at the hospital. He is doing a lot better this time
compared to the 1st hospitalization over a month ago. He is slowly beginning to reopen his collapsed lung on the left side
without having to be intubated. It looks like Daniel will spend his first birthday here but everyone on the floor is so happy
to celebrate with him. We will try our hardest to keep the blog updated but know that your wishes and prayers continue to
be with Daniel as always.
-Justin
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