8 Months Old!

Little Lucy is 8 months old...and in case you are counting (because you can bet that we are), she has now been home just as long as she was in the NICU.  WOW!  I think of the last 4 months that we've had her home with us and cannot believe that she spent those first 4 months in the NICU.  It's SOOOO much better to at home with mommy and daddy!

We celebrated the occasion today by a trip to the pediatrician for a pre-op before her brain and spine MRI, bronchial scope and GI evaluation on Tuesday.  It will be a long day for her but we are very glad that neurology, ENT and GI were willing and able to coordinate several procedures on the same day so that she only has to have anesthesia one time instead of several.  Neurology will be looking at her brain structure and evaluating how it is developing in the 5 months since her shunt was placed as well as taking a look at her full spinal column. ENT will be putting a scope down her trachea to evaluate her tracheomalacia and GI will be looking at her surgical site and also putting in a new feeding tube (Yay!  We are hoping it will leak less, fit better and allow us to not have 1/8" thick foam padding on her site constantly so that her skin can breathe).  So, all good things to help her in her growth and development, but no fun for her (and us!) to have to go through.

We also had a hearing evaluation today.  The results were OK, not great.  However, Jason and I are not sure how well you can really evaluate an 8-month old's hearing.  We sat in the middle of a tiny (very hot!) room and there were speakers on each side of her that she was supposed to look at when the audiologist made a sound.  Well, if you know Lucy you know that she is extremely visual and also that she likes to finish what she is doing before moving on.  So, she wasn't the best pupil in this type of situation.  We'll likely re-evaluate at some point in the future to determine if there truly is some type of issue that needs further investigation.

Last week, Early Childhood and Family Education (ECFE) sent someone out to our house to discuss Lucy's development and determine if there are early intervention programs that we should be involved in.  We will likely have a more formal evaluation sometime in the next few weeks and make a plan of action from there.  Since Lucy's physical development is so on target right now, we may not need their services until later in her life, but we've heard it is an amazing program to get connected with early on so that if she does need special accommodations once she is school-aged, we are already connected and the program is aware of her background.

We also have an appointment with the Feeding Clinic, but not until the end of next month - I'm not sure if they are a small group or just extremely busy, but that seems like a long time to wait.  In the meantime, she continues to eat a little better every week, even if it is just an extra mouthful above what she did the week before.  She loves carrots and sweet potatoes and if her little body didn't reject it, I think she'd be a great eater!

Also, we switched insurance companies since our previous insurance was with Jason's job in Colorado.  WHAT A PAIN!  We are back to square one with getting her RSV vaccine approved and she will likely miss her February dose because of the red tape we and the doctor have to go through.  In addition, they cover home medical supplies differently so we are out of supplies as we wait for them to get approval to send us her feeding tube supplies.  UGH!  I feel like they are definitely hindering the medical process and not helping it in any way.  But, health care reform is a rant for another day, another place!  We try to remember that above all we are grateful to have such great private insurance that provides for a large majority of Lucy's medical bills.  Through all of our days, we strive to remember the words of Jeremiah 29:11 - For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.

Uffta!  That feels like a lot - no wonder I feel like we've been busy lately!  We are all excited for winter to be behind us and to be able to go outside and take walks and enjoy the sunshine.  Until then, Lucy's smile continues to bring sunshine to our lives!