Archive | May, 2010

Birthday Information

I cannot believe my baby girl is turning one year old.  I honestly cannot believe she fought through all of the crap she had to deal with in just her first year of life.  She is a fighter and a hero and a true testament to our faith. She has taught us so much and brought us to a wonderful place.  Physically, we moved to Arlington Heights because of her to be closer to family and the hospital, but also a place where we have peace.  I have always been so terrified of death.  To think of loosing my husband, my mother, a sister, a friend or God for bid, one of my children, made me sick to my stomach.  I couldn’t comprehend someone that I love so deeply to leave me or to face that I may leave my children behind.  But, after reading and praying and witnessing children leave this world, I have been confronted with death like a boxer meeting his opponent’s glove.  And the reality is that Gabi may not live to her next birthday or may not live to see her parents tear up when she graduates from college, but I think I have come to terms with that.  I truly believe there is a better place and that this life is preparation for our eternal life.  We are all destined to an eternal life with no pain, no war, no anger. Just love. Now that’s comforting and I thank Gabi for teaching me that.

On that note…Gabi is turning one and IT’S  TIME  TO  PARTEE!

You all know the time and location from the evite.

  • There are lots of picnic tables, but you may want to bring a lawn chair or 2 and/or a picnic blanket for the kids to sit and eat
  • There will be 2 pinatas for the kids, 2 moonwalks, a kickball tournament, water balloons (depending on the weather), lots and lots of food!!, and bags for the adults.
  • There is a built in shelter and we will have a canopy tent also up.
  • There are bathrooms there.
  • The raindate is Sunday, June 6th. Check the blog the night before, Friday to see if we will be using the rain date.

Ronald McDonald info

We will be collecting items for the Ronald McDonald House in Milwaukee. As most of you know, we spent 6 months there and they never expected a penny from us.  Dinners were provided almost every night from the community, volunteers ran the house, and all of the families there were suffering.  This charity helps so many families in most often the toughest times of their lives.

Please consider making a donation.

We will be happy to take cash or checks made out to RMH. Even $5 or $10 makes a difference.

The list below is taken from the RMH website

Wish List

Thank you for thinking of the children and families who stay at the Ronald McDonald House during this difficult time in their life… you truly make a difference for them. Our families, some 1,200 each year, are facing unimaginable stress… their child is seriously ill, and their lives are turned upside down. We may just be the only bright spot in their entire day and we take that responsibility to heart! We are a home where kids can just be kids, away from hospitals and doctors and treatments… and parents can lean on each other.

Note: All Donations MUST be NEW and in the original packaging.

Special Wishes

  • Magnetic Free-Standing Dry Erase Board
  • Microsoft Office PC
  • Complete Button Maker System
  • Projecta-Theater-Lite 80″ Portable Projector Screen
  • Powerful, Rechargable Flashlight
  • Casio-Super Slim XGA DLP Projector
  • Canon 8×25 IS COmpact Image Stabalized Binoculars 7562A002
  • 40″ Samsung LCD HDTV (LN40B630)
  • Gift Cards to Brookfield Auto Care and Scrub-A-Dub for van maintenance

Special Baby Items
Look up our registry at USA Baby. Simply enter “Ronald” for the first name and “McDOnald” for the last name. We have registered for Carter’s crib sheets, Peg Perego High Chairs, and a Britax car seat.

Food Items

  • Greatest Need: Individually Wrapped Snacks: Nabisco Snack Packs, Granola Bars, Fruit Snacks, Sandwich Cracker Snack Packs, Cookies and Chips (great Grab N’ Go items for our families going to the hospital)
  • Juice Boxes (100% juice)
  • Frozen Pizzas

Household Items

  • Antibacterial/Disinfecting Wipes
  • Ziploc Baggies
  • White Wash Cloths
  • Dish Detergent
  • Kleenex
  • 22 oz. Sugar and Creamer – NJoy Brand
  • Splenda & Sweet N’ Low
  • AA Batteries
  • D Batteries
  • Flashlights
  • Postage Stamps (.44)
  • Black Sharpies (not ultra fine)
  • Dry Erasers
  • Dish Scrubbers (Non-Stick Safe)
  • Tea Bags
  • Lemon Pledge
  • Paper Towels
  • Baking Soda
  • Rubber Door Wedges
  • LED Night Lights (auto on/off)
  • Aluminum Foil
  • Shower Caddies (hang over shower head)

Gift Certificates

  • Target
  • Best Buy
  • Pick N’ Save

Please Consider Using Our Registries
For a complete list of items the House needs on a regular basis, we have registered at Target stores (www.target.com) through their Club Wedd, Baby Registry and Target Lists. In addition, we are registered at Pottery Barn Kids (www.potterybarnkids.com). For registries simply enter “Ronald” for the first name, “McDonald” for the last name and “WI” for the state. For Target lists search by organization and enter “Ronald McDonald House.”

Toy ideas

  • I did speak to a volunteer at the house and she said because of limited storage, they are well stocked and DO NOT NEED board games and art supplies.
  • They have lots of boy things but are looking for girl things for ages 0-17, except barbie, they have lots of barbies.

Ideas of what are needed:

  • Dolls
  • Baby toys
  • My little pet shop toys
  • My little Pony
  • itunes gift cards for the forgotten about teenage kids

We can’t wait to see everyone at the party and if you cannot make it, we thank you for all of your support this past year!

Love,

Teri

Comments { 3 }

Scope tomorrow

Gabi is doing great! She is getting stronger everyday.  Tomorrow is the fees scope which will look at her vocal chords.  They put a tiny camera down her throat through her nose.  Poor thing.  I am kind of hoping this is the issue because they can help with this. If there is damage to the vocal chords, all she might need is an injection of cortisone to bulk up that paralyzed or damaged vocal chord to help it to do its job.  This could potentially help the puking, help with her tremendous speech delay and God willing help with the eating thing and the refluxing.

If the problem is not the vocal chords, then they will proceed to do a swallow study to see what is going on down through the esophagus and lower GI trac.

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New milestones!

Gabi is doing great!  She is still vomiting and refluxing like crazy, but overall she is doing great.

She is now sitting up on her own, she has 5 teeth and can now actually play on her tummy for a few minutes.  Her face is planted into the floor because she has no strength in her pectoral muscles to push herself up but she’ll get there.  At least she isn’t screaming now anymore with tummy time.  As she gets stronger and reaches these milestones, we are hoping that this will help with her overall feeding and vomitting issues.  The GI doc explained that because her develpmental level is just barely reaching 6 months and 6 months is when the reflux peaks in most babies, we are hoping the worst is behind us (please knock on wood now).

The appt last week was extremely frustrating, but I have calmed down about it now.  I thought they were going to run tests and “fix” her, but we sat down, all 8 of us (a speech team, OT, GI nurses, dietician and the doc) and they watched her eat, or try to, and assessed that they don’t think her problems are just relux.  They think her vocal chords are damaged from all of her heart sugeries.  My face must have turned beat red because they asked me if I was OK and I said no.  I explained to them I had pushed for the speech team to do the scope of her vocal chords months ago but they said they were confident that the vocal chords were fine.

So, they had to wait to do the swallow study until after the scope.  So, this test will be on May 20th.  I pushed for a sonner appt, but alas, they couldn’t get her in. This is both good and bad.  Good because it shows that she is now not critical enough for them to get an immediate appt like we are used to, but bad because we have to wait.

In the meantime, they had me try her on a new formula, pregestimil, which has been horrible.  She got awful diarrhea and was throwing up even more. So, I am supposed to be sticking this new formula out for 2 weeks, but guess what?  Yes, against docs orders, she is back on Enfamil and back to her “normal”.

We are planning her first birthday and as I look back on this year, it seems so surreal.  We are so blessed. So very blessed to be able to still hold Gabi tight and watch her accomplish milestones that I completely had taken for granted in the past.  Every minute with her is a gift. The truth is, we have no idea how long she is going to live. I am just cherishing every moment with her that I can.

Enjoying this beautiful spring weather

Actually content playing on her tummy. Unbelieavable.

Silly girl

Happy Mothers Day to all.  I have friends that have lost their mother this year, lost their child this year, watch their children suffer, and some have been blessed with another child.  Find the blessing in whatever you are given.  There is a blessing somewhere….always.

Love,

Teri

Comments { 4 }