This week was rough. Cecily's vomiting hit an all-time high and she was in so much pain! On Tuesday night the balloon in her g-tube began to leak... We hoped we could make it through the night and save a trip to the ER as Cecily had two procedures scheduled for early Wednesday morning.  Despite a somewhat rough night, we made it!

On Wednesday at six am we arrived at Children's for her endoscopy and a tube change. By ten am Cecily was in recovery and she was smiling! Smiling! This is not a usual activity for Cecily so we were very optimistic that things were looking good.  On Thursday the smiling continued and the vomiting seemed to be under control.  Could it be that a simple strech of her fundoplication and the exit from her stomach to her intestine has resolved her tummy issues? It seems too good to be true but we're not going to look back!  We're so happy to see Cecily smiling and squealing. The last few days have been the best days of her young life.  She is engaging with her environment. She is aware of people entering and exiting the room. She is sitting up for longer periods of time and she is making new noises. She is aware of her voice and she likes to make happy squeals!  Her favorite hobby is pulling hair... this is quite painful but it brings her so much joy!  She loves to pull Noah's hair but he is a good sport! If she is crying he will bend over and let her have a good tug.  We bought her a doll with a lot of hair in hopes she will tug that instead :)  We've realized that she likes the tugging but she loves the impact she is making when we say "ouch!"

Words can't express what a wonderful gift these last few days have been for me and our family.  We are grateful for the comfort and relief Cecily appears to be feeling and we will pray for it to continue.  Onwards and Upwards!

I just had to post this.  Before dinner Cecily fell asleep on her mat in the playroom. We decided to transfer her to her room after dinner.  Mid-way through we heard some happy shrieks and a ruffle of paper.  I ran to the playroom as we're always afraid she'll get tangled up with her g-tube and we found her flipping through the Pottery Barn Kids catalog... We've been using it for ideas for our first room makeover.

And for the record - I will not be spending the generous donations we received at Pottery Barn Kids.  While I'd love to, we're working hard to stretch our dollar so the catalog is for ideas... the purchases will come from some of our favorite bargain stores!  That said... if they would like to sponsor a room we're more than happy to accept!

Next week Cecily will have an endoscopy in hopes of finding out what is causing her continual pain.  We've had a rough week. She continues to vomit multiple times throughout the day despite the fact that she shouldn't be able to vomit at all since her fundoplication.  We are happy to finally have this on the calendar! Thank you to Nurse Nancy and Dr. Wood for pushing to get this done quickly! It is so nice to have advocates for your kids.  I know it would not have happened without their help. 

In addition to the endoscopy, the doctors will swap out Cecily's g-tube for a j-tube... I was just becoming a g-tube expert so hopefully this will be an easy transition. We've learned not to put all our eggs in this basket but we are optimistic that this change could make a big difference for Cecily!

We joined a meet up group for parents of children with special needs today.  I'm hoping that this will help us build our online community so we can share stories and help other families.

The outpouring of support from old friends, new friends, co-workers and family continues to inspire us.  Thank you! Onwards and upwards!

Words can't express the gratitude we feel towards our family and friends. Thank you for supporting the launch of our charity!  I am unfortunately sick at present so this will be a short entry. I just had to say how overwhelmed we feel by the amazing words of encouragement we received over the last twenty-four hours.  It was hard to share this very private part of our lives but we are even more convinced this was the right decision.  We hope we can help one local family at a time! We are truly a lucky, blessed family.  Thank you!

Yippee! We  received our seal from the Secretary of State so we're official! Thanks for all the support from family and friends to get us to this day!  We are very excited!  We have completed our 1023 IRS forms and have filed for tax exempt status! Upon approval from the IRS will be will be recognized as a 501(c)(3) charity!

Today was a very exciting day! We identified our family for our first decorative room makeover! It will be awhile before we can actually get going - due to delays with paperwork etc. etc. - but this just gives us more time to plan for this very deserving family! We are very excited to be fulfilling our dream of helping families of children with special needs.  I continued to be amazed and very so gratefulf for the support we are receiving from family, friends and co-workers. 

Even more exciting is the progress that our little Cecily is making!  Today she got up on all fours and started to rock for a brief second.  She sat for the longest period of time yet - and she is engaging with us in ways we only dreamed about just weeks ago.  We can see a major change in our little angel and are excited for this progress to continue. 

Now if only someone would come over and volunteer to clean my house... any takers? Onwards and upwards!

It looks like the state is lagging on our paperwork!  We are eager to launch this little charity into the Web 2.0 world, shout about it on Facebook, and send out our email campaigns!  I have received a few pieces of mail for Cecily's Closet and each one has been a very fun surprise.  I hope we can grow this charity into something helpful for local families.  If success was measured in passion then we'd be so successful!  I reached out to a few more local businesses today but my phone is not ringing off the hook.  But that's ok!  There are a lot of people in San Diego and I'm sure if I knock on more doors I'll find a few that will open wide.  Onwards and upwards!

I have to figure out how to advertise these types of businesses on my site. For now, I'll just blog about them... 

Adventure Cuts in Carlsbad founded by two sisters caters to children with special needs. Since my baby girl was blessed with a full head of tangly curls - I'm a fan of a salon that does not mind an occasional meltdown, tantrum or all out cryfest.  But even better than this is they give back to the community! 

April is Autism Awareness Month.  Did you know that one in seven children in the U.S. is born with some form of developmental or learning disability? Wow! I didn't.  The Autism Research Institute in San Diego says new statistics show that one in 65 boys nationwide is born with a form of autism.  Anyhow - this lovely salon opened its doors in support of this cause and donated a portion of their profits to this great cause.  I'm a fan!  Check them out!  Cecily is due for a cut so I'm going to try them out... hey maybe they'll want to partner with us and we can help grow Cecily's Clsoet together. Onwards and upwards!

Another fun weekend is behind us! Three birthday parties, the taxes, and not a lot of downtime. While Noah had a very fun-filled weekend, his Mom (and Dad) are very, very tired! After nursing colds for more than 2-weeks, this weekend didn't end up being the rest and relaxation that we had hoped for!  But isn't that just one of the perks of being a parent? Non-stop, chaos! I would be lost without it. I am looking at the calendar for this week and it does not look any better.  Cecily has 3 therapy sessions, 3 medical appointments, and a visit from our lovely special education teacher.  I'm trying to figure out how we'll get everything done this week and have a chance to rest! 

We made some great progress on Cecily's Closet this week. I continue to be amazed at the support from family and friends.  We're expecting our 501c3 charity paperwork this week... and that will be a huge milestone complete! We received our Federal Tax ID # so we're just inches from the finish line... which is really the starting line.  Now the hard-stuff like fundraising needs to begin. I will have to have an out-of-body experience for that as I am terrible at asking for anything - especiallly money!  I will continue to hope for that winning lotto ticket... which of course means I would actually need to buy it first, right? 

Ok. one baby is happily in bed. One baby desperately needs to be in bed.  One table full of dirty dishes.  Two piles of laundry.  One timecard that needs to be entered... the list is never ending.  But alas there is tomorrow! Onwards and upwards!

 

Today we had our first day of respite care.  I wish I could give this gift to everyone.  It is hard to have someone you don't know come into your home to help... but I know I need it so I am sure it will get easier. Today I was able to give Noah the attention that he is desperately seeking. He has been so wonderful with Cecily but he needs some good Mommy time!  If you don't have respite care - ASK for it!  If your insurance says "no"... then try Medical.  Maxim Healthcare here in SD is the only home care agency in SD to accept Medical Plans. (at least that is what I've been told.)  Someone correct me if I'm wrong.  I have no stock in that company!