Friday, July 22, 2011

My Chunky Monkey

Look, I am sitting up all by myself!  YAY!  Even though it was just for about a minute, we a so proud!

I am so sorry that Scott and I have neglected the blog lately.  Truth be told, we have been enjoying our time together as a family, and we know that our loyal blog followers respect that and understand how LONG OVERDUE this is for us. 

Emma’s Progress:

Emma is WONDERFUL!  She is getting quite the personality.  She is smiling and “laughing” so much.  I put “laughing” in quotations because; she only makes noise part of the time.  She loves to be sung to, played with, read to, rocked, taken on stroller rides, and praised.  She gets so excited when she accomplishes a new goal.  And speaking of goals, she is meeting new ones everyday.  Her occupational therapist told us yesterday that we are going to have to set new goals for Emma because she has met all of her original ones.  Emma is: transferring objects from hand to hand, reaching up, out, up and across, rolling from her stomach to back, “almost” sitting on her own, grasping and holding on to objects for a long time, interacting with her surroundings, rolling to her sides, and on and on!  Everyone is very happy with her progress.  Emma is now 66 and 3/4 cm long and weighs 8.035Kg.  For those of you who have not been around these types of measurements, she is about 25 inches and 18 pounds! 

Doctors, Doctors, and More Doctors:

In the past few weeks we have seen: ophthalmology (eyes), nephrology (kidney), orthotics (helmet), cardiology (heart), pediatrician, and will be seeing neurology (brain) this next week.  Here is the short version of all of her appointments.  Ophthalmology: They still want to do tear duct probe and eye muscle surgery on the left eye.  Scott and I are not totally on board with the eye muscle surgery yet and are looking in to other options.  We know she needs the tear duct probed because we have been “working” on it basically since the day she was born and it is not much better.  Nephrology: We met with a new nephrologist at CMC and were quite impressed with her.  She took Emma off one of her meds because Emma’s urine was actually too alkalotic (not acidic enough).  We will be following up with her more post Glenn to watch out for kidney stones.  Orthotics: After being lied to about Emma’s helmet (don’t even get me started), this Mama got everything arranged.  We met this the helmet company and will be receiving Emma’s helmet next week.  This will help with her misshappened head and overall neck tightness.     Cardiology: Emma’s cardiologist is very happy with her progress.  He has been impressed to see how interactive she is becoming, how strong she is getting, and how good she looks.  He told us this week that she might be gaining too much weight…lol.  After being FTT (Failure to Thrive) for so long, we will take the major weight gain.  We do know via heart echo, that her shunt is getting smaller (this normally happens between 3-6 months of age), but we are monitoring her closely.  Hopefully we will not have to do the surgery sooner, but if we do, they are prepared.  Pediatrician: Cardioldy wanted us to see a general pediatrician.  We are seeing one, who is very nice.  She was also impressed to see how well Emma was doing considering all she has been through.  We were already caught up with our vaccines, so nothing new there.  Neurology: As many of you know, Emma is missing her corpus collosum, so we have a follow-up with neurology next week to check on Emma’s progress.  I think they will be pleased! 

In the Near Future:

Well, that about wraps up our recent events.  I can’t believe our little Princess is almost a year old.  I am busy planning her 1st birthday.  Keep watching for details as we are planning a special “giving back” organization called Hope From Emma’s Heart.  We will be asking for everyone’s help to make this a success for babies with HLHS at Children’s Medical Center.  It will be an opportunity to show Emma every year on her birthday that giving is important as she has had so many people give to her. 

Prayer Requests:

Please pray for Emma’s upcoming surgery (August 22nd)

Pray that the surgeons, doctors, nurses, etc. have the wisdom and knowledge to take care of Emma.

Pray that Emma’s post op is smooth and short.

Pray that Emma continues to develop, grow, and meet milestones.

Pray for all of our heart buddies.  Some of them really need our prayers.

Pray for Scott and I.  We know this next surgery is necessary, but are not looking forward to handing our baby over again.

God is good!  All the time!  God is good!

Much Love,
Emma’s Mommy (Sarah)

Emma and her future Father-in-law :)

Emma and her future Mother-in-law :)

Happy Fourth of July

Before Fireworks

During Fireworks

Red, White and Blue 

Aunt Stephanie and Soon to be Uncle Aaron!  

Play Time with Mommy!

Uncle Tom Tom getting some Emma Love


  1. So happy to see an update! And so happy that you are just enjoying spending time with your sweet Emma. Emma looks great! Update us when you can. Prayers continue - regardless. God is ALWAYS aware of your needs - even before you are.

    Joy/Chandler, OK

  2. Hi
    My name is Jenna and I came across your site. Emma is an amazing courageous strong and determined fighter. She is a brave warrior smilen champ and an inspirational hero. I was born with a rare life threatening disease. I love it when people sign my guestbook.

  3. WOW..WHAT GOOD NEWS. It is so hard to believe Emma is almost one. Scott and Sarah, she is so precious and we know how important all these accomplishments are for Emma. We know she is a lot of fun. Isn't it wonderful to be able to actually play with her after she spent so much time in her little bed. You and your whole family are precious and wonderful. Emma is so blessed to have you and Scott for her mommy and daddy. And, you are so blessed to have such a precious angel. Sarah, your experience teaching small children will also be a blessing for Emma. We continue to pray! Love to you, Kendall and Darla (Oh yes, you send us an update WHEN YOU HAVE THE TIME. We know you are busy busy busy. We love to read them when we get them.)