Somber

I am somber.  We went to Morgan’s Wonderland on the 25th.  A dear sweet 4 year old little girl named Ember Hill passed away on the 26th.  Yesterday was her funeral.  It was a beautiful service.  Her life was celebrated.  I bawled.  Funerals seem so unfair to me.  The family prepares a beautiful expression of love during their most painful hours.  They stand and receive all of their friends and community.  They allow all of us to have closure and say good-bye.  What are they doing?  To me it seems they are helping us grieve.  Then we all go home to our normal lives and go on, but the family is left standing there, empty.  They have comforted us, but they are still crying.  In our world, people are uncomfortable with grief and sorrow.  Healing takes time.  I pray for the Hill family.  I pray they can find reason to get up in the morning and get through each hour.  We love you.

Sweet Bella is sick.  Fevers of 102, so sad and uncomfortable.  She has had low grade temps since our pulmonology appointment.  She is coughing.  Hoping she can get better soon.  I hate to see her like this.

 

Driving home from San Antonio –  love the foot!  :)

 

 

 

 

Just a sweet picture of my Bella from last week.  I love her little smiles – like she knows something that I don’t!

Morgan’s Wonderland

We went to Morgan’s Wonderland in San Antonio.  I highly recommend it!  It was wonderful.  We have only taken Bella out in public a couple of times and we get one of two reactions – the open stare or the “I’m going to ignore you and pretend you aren’t there” look.  But at Morgan’s Wonderland, neither of those things happened.  Bella was just Bella.  People talked to her, and not in that condescending voice, but actually talked to her and us.  My sister and I were talking about it and she said that there it’s like these wonderful children are actually celebrated.  It has been so well thought out.  Bella could do anything in her wheelchair that anyone else could do.  She rode the carousel.  She rode on the off road adventure.  We all had a wonderful time!  Yeah for Morgan’s Wonderland!

     

Family

Aunt Kathie got married, so we have had lots of cousin and aunt time around here lately!

Doctor Appointment

Monday the 21st we went and saw Bella’s primary…and…we went alone – in my car, no ambulance. (did you feel the earth shake?  )  :)

Bella had her 18 month well child check-up.  We talked about her little hernia that she has developed.  We talked about her weight loss.  We talked about how well she has been doing and how she hadn’t needed oxygen for a full month before her pulmonology appointment.  I told her about the pulmonologist’s plans to increase the time off the vent and the passy-muir.  And her one comment?  “How much oxygen is she on now?”  Wow – that woman has obviously seen this all before because yes, oxygen has become our new best friend.  And after our first hour on the passy-muir, Bella hasn’t been able to tolerate it again for a prolonged period of time.  One step forward, two steps back. 

Happy Father’s Day!

My, oh my!!!!

On Wednesday we went to pulmonology.  He was so encouraged by her progress that he gave us some pretty amazing orders – orders that caused me to almost hyperventilate!!  He wants us to work up to 12 hours on the HME and 8 of those on the Passy-Muir.  Oh – my head felt light, my pulse quicken.  I was amazed and totally frightened.  But she is showing me that she is ready to take the next step.  We used to do her HME times 2 hours 2 or 3 times a day.  Yesterday we upped that to 3 hours.  And…she did it!!!  Her nurse and I were both so anxious that last half hour.  Her respiration rate was getting so high, but her heart rate and O2 stats were beautiful, so we let her do it.  Wow, baby girl!

Then today the Passy-Muir came.   I popped it on, and she has been talking for the last hour.  My goodness, little one!!!  Congratulations on breathing.  Congratulations on finding your voice!  We are all smiles around her!  We love you!

What Oral Aversion?

I am so proud of Bella.  I can’t even express it.   Bella has overcome her oral aversion.  I can’t believe it.  Look at all of those fingers in her mouth – no vomiting, no gagging, nothing.  WAHOO!!!

Loving on our girl!

Our GI appointment this week was interesting.  The doctor decided to review her growth.  She pulled out her charts.  I pulled out my DS charts, which I consider to be more accurate.  We discussed the fact that she has lost weight (again) for the sixth month in a row.  Not good.  But the worse news is that she hasn’t grown in length in the last four months.  And her liver is enlarged.  And she’s still anemic.  She ordered a bunch of labs (poor baby) and increased her feeding rate.  We’ll see.  The good news is she is so cute – and she was showing off her ability to almost sit without support!  :)   Guess who went to church again today!!!

Good Times

Bella is doing well.  She has had a very busy two weeks.  I had planned on posting last Sunday all about her wonderful week and her breakthroughs, but I just couldn’t.  Last Sunday a very special little boy named Carter passed away.  I’ve never meet Carter or his family, but my mind couldn’t leave it.  I pray for his family.  When our son passed away, my world stopped.  But life went on for everyone else.  It seemed cruel.  When our son passed away, I had no memories of him, other than his pregnancy.  I had no tangible proof of his existence, other than the nursery we had set up.  Now having lived with my sweet Bella for the past 17 months, I am surrounded by evidence of her existence.  My life revolves around her care and her life.  If that were taken away from me, there would be a very large void left.  It would never be able to be filled.  So in respect to Carter and his family, I just couldn’t post anything.  My world stopped for you Carter.  I know that you are now in a wonderful place, happy and safe.  May our Father bless your family as they find their way without you.

On the Bella front, she is cute as ever!

Last week we were downtown for appointments three days in a row.  Our first order of business was to find her missing thyroid.  It took a little radioactive iodine and some gamma radiation, but we found it – yeah!  Those were some long days.  Then there was the ABR test.  That was also good news.  Her hearing has actually improved.  She has essentially normal hearing in her right ear and some loss in her left ear.  She still has fluid in her middle ear, though, so we need to go talk to the ENT.  Looks like tubes are in order.  The Audiologist wants a hearing test every six months since she is on four different meds that have hearing loss as a side effect – so fun.  That ABR was tricky to prepare for.  They wanted her sleep deprived.  She didn’t want to be sleep deprived.  We played games.  We painted.  We did everything – she still crashed on the way down there.   :)  Oh well.  We got a good study and that’s all that matters. 

We were brave and took her to the farm the Saturday before Memorial Day.  I loved it!  She got to see some things.  Mainly she was inside, but I loved having her there!!  While we were there, she decided to try my ice cube!  I was ecstatic!  We have been working on cold for so long!  Yeah Bella!

 

Another huge first!!  We took Bella to church.  Our family sat together in church for the first time since January 2009 – that was great!

Playing with her sisters on the piano and then doing more tastes in therapy.     

Our little miss wants to sit up so badly.  She is getting so close.  Way to go little one.  I am so proud of you.

We love you Arabella!