Giving Thanks

Dear Family and Friends,

As you know, at this time last year, we were with Alli in intensive care waiting for her heart surgery and learning about infantile spasms. We have come a long way over this past year and we just wanted to share our gratitude with you, since we can't be with many of you in person.

At Thanksgiving 2012 we are thankful for the following:

The many trips my parents have made here to help us around the house and to keep a sense of "normal" for Samantha

The medical and developmental progress Alli has made over the past year through the tireless efforts of many specialists, therapists, and surgeons.

To be employed and by such people that are so generous and sympathetic to the many unexpected events over the past year

The healthy arrival of baby Millie, or Miwi (as Samantha affectionately refers to her)

The joining of the Stocks to our immediate and extended family and the joy they have brought to Carrie's life

Samantha's strength and resilience in handling aspects of childhood that will be drastically different from her peers and the many laughs she brings to our house on a daily basis

The many sacrifices you have made to help us.

The gift of being able to travel to Raleigh this Thanksgiving to celebrate with our family here.

Finally, we are saddened, but grateful, for the addition of Grandpa Culos, to Alli's many heavenly advocates. We know he looks out for her and believe that he conspires with Grandma Brune to help us on a daily basis. It is hard to see Alli smile and not think of him.

We wish we could be with you to celebrate today, but know how thankful we are to have you in our lives.

With love and gratitude,
The Hakerem's

Hand me downs...

It has been a busy couple of weeks since we were discharged from the hospital.  Alli's recovery has been slow, but she is recovering and doing well.  We are slowly working her back to bolus feeds to give her stomach a chance to fully heal.  She was on a continuous feed while she was in the hospital.  This week we are working on feeding her at 75 mL per hour.  So she is connected to the feeding pump for roughly 2.5 hours at a time during the day and then off about 1.5 hours in between feedings.  Bolus feeds are more ideal than continuous feeds as they mirror a more normal feeding pattern and should help Alli to recognize hunger.  So, the ultimate goal is to get her to four meal times per day and work on oral motor/feeding therapy at times when she should start to recognize hunger.  

I am starting a list of "inventions" as a result of our journey with Alli.  So far I have "invented" a special sock to keep her pulse ox sensor on her foot - this consisted of cutting the heel out of an already existing sock.  Today, after an annoying phone call with the medical supply company (they are genuinely nice, but I could do without having to talk to them on a monthly basis), I decided that there needs to be an online ordering system for medical supplies that connects with the insurance company so I can go online and quickly input what I need for the month, know what insurance allows, and make an informed decision about whether we want to come out of pocket for additional supplies.  Seriously, there is no online system for this.  Should be pretty easy to establish.  My next million dollar idea is to design a multidisciplinary playmat for children with special needs that are not infants.  It will incorporate sensory items and the overhead toys will be high enough to reach so that they don't hang out in the child's face.  I am accepting applications for construction of said mat.  If we hit it big, there could be royalties involved.

It suddenly became fall while we were in the hospital.  The weather is cooler and so comes the change in wardrobe for the girls.  For whatever reason, the change to 12/18 month clothes for Alli has unearthed a wide range of emotions.  Kind of silly, but true.  When Alli was in infant clothes I didn't necessarily equate her hand me downs from Samantha with anything in particular.  Though the infant milestones are big ones, they often run together.  Rolling over, pincer grasp, lost reflexes, sitting up, all necessary and important developmental milestones, but none that stuck out from a wardrobe perspective.  Now, we are in to the clothes Samantha was wearing when she was walking and for whatever reason, those memories come back vividly and the contrast between the two girls becomes much more profound.  I can remember where the outfits were worn and watching her toddle around in them.  The same outfits we watch Alli try to roll over in.  We don't ever really focus on what Alli doesn't do. In fact, I hardly ever stop to think about how old she is.  I think that is probably why the clothes are almost haunting.  Though we appreciate and celebrate every accomplishment and live with her in her moments and go at her pace, they are a reminder of how profoundly developmentally delayed she is.  There is nothing to do about it but be grateful for the grace to accept her as she is, the physicians and therapists helping her in every way they can, and the reese's cups and mini twix left over from Halloween :).

Samantha is getting to a really fun age.  She had a great time trick or treating with her friend Gabriela Elisa this past week and had a great third birthday.  She had a special early celebration with nanny and grandpa John before they left to go back to Michigan.  We were joined by my cousin, Maribeth and my Goddaughter, Anne.  Then she had a small party on her actual birthday with her beloved, Meggie (and her fiancé Max), and her friends Caroline, Julia, and their families.  She celebrated Minnie Mouse style and loved every cake filled minute of it.  Her new favorite phrases include 'yes?' or 'yes or no?' at the end of a question.  For example, "Mommy, you want to do a puzzle with me?  yes?"  or "Daddy, I eat ice cream cake?  yes or no?"  She's a trip.  She is also very determined to do things herself.  "I want to do it!" is a phrase we often hear around the house.  She has also taken up the art of negotiation, for example, "Mommy, I ride my tricycle?"  "Not right now, Samantha.  It is raining outside."  "Just try, mommy."  We hear "just try" a lot when we deny her requests.  Often at really funny times.  Samantha graduated to her big girl bed a few weeks ago.  She loves it and loves to hear about how Jason and my dad built it for her.  We have left a few pieces in the room from her ladybug nursery and upgraded to a more mature ladybug theme.  We had fun picking everything out together.

New baby boy continues to grow and develop.  His 20 week ultrasound looked good and we officially graduated from perinatal care for this pregnancy.  We picked out his nursery pattern and everything arrived this past week.  We are going with Dr. Seuss ABC's.  Now we need to pick the wall color and furniture.  We have started to debate names.  Per usual, we will wait until the very last minute to make a decision and it is going to be a tough one.  We like a lot of boy names.  

Jason and I are doing well.  I started contract work with Deloitte last week.  It was sad to say goodbye to my new friends at UPS, but is always so nice to see familiar faces back at the firm.  Plus, I have been missing the Monday and Tuesday noodle bowls from the 191 bistro.  They make my week.

Ok - this post has been all over the place.  Enough for tonight.  I think all of the political commentary and iterations of the electoral map have rendered my brain useless.