NO LIFETIME MAX BABY GIRL!!

Whoooooo hoooo! No lifetime max for Lily and no denial of coverage for prexisting conditions. this matters sooo much to our family.

Who is hiding the sun?

Baseball season is coming!

Blossoming Beautiful Girl

We want it back here in Illinois. We want blossoming dogwoods and tulips and hyacinths. We want warmer walks in the park and sunglasses and light coats.

Standing!

Talk about a good day turning into a great day! Lily stood and I have the video to prove it!

Haiti

So I can't sleep but for thinking about Haiti tonight. It's so far away but I do have a personal connection to it. It was 1980 and I was about to be a freshman in high school. Our church put together a mission trip for HS students along with another nearby church. I have to forgive my memory for the names of some of the places we went to. We stayed at a Wesleyan mission on an island off the coast called Ile de La Gonave. After this trip, water became my favorite beverage, and I vowed that someday, if I had a child they would have to go visit a third world country someday to gain some perspective of their life. I don't know if Lily will ever make a trip like that, but with her you never know what she is capable of:).

I still carry these images in my head to this day....

Gretchen the head of the Wesleyan mission serving us gingerbread cake with lemon sauce (now wondering if she is still alive after all these years)...my brother playing soccer out on the salt flats with a little Haitian boy...groups of Haitian kids with orange hair and distended bellies from malnutrition...hearing the voodoo drums one night we stayed there because someone had passed away...hearing the angelic voice of a little Haitian child sing in the church that we visited-- they were standing under the one light bulb in the church that was dangling from the ceiling...riding donkeys for 2 hours up to the top of a mountain where there was a historic fortress (maybe this was on the main island of Haiti?) while women followed along side us balancing wooden crates of Coke in glass bottles on their heads...breadfruit trees on the side of the road...riding in trucks up to the mountains to a bat cave where woman would come with their malaria coated buckets and pails to get water for their families -- water became my favorite beverage after that...helping build the 36th well on that island of 60,000 people...picking up a rock and seeing a hairy tarantula...trying to explain to a young man what a curb (from the street in front of my house) was and how no, I did not have any children and no, i was not married (in that order)...swimming in the ocean with one Haitian girl who was fascinated with my hair and kept touching it (I am a redhead)...being surrounded during ou lunch as we sat in our truck by groups of hungry people and not being able to give them any..having the kids beg to see "Tee fee again" -- one othe HS student who was also a gymnast perform for them...asking someone how they were and hearing the truth because no one there ever said "fine"...

Haiti to me is an island of caring, hardworking people where there is no middle class and you are only rich or poor (mostly poor) and my heart breaks for them. I read on a blog of a Haitian mission that the island is fine (see my listing of References for two sites of Haitian missions) but that they get their food from Port Au Prince so they will be in trouble with the prices of gas and food so high now. People are taking these times to profit off of others misfortune in a time like this.

All we can do from here is pray for the people there and the ones that are going there. My friend Nancy in Iowa included this prayer in her Christmas letter this year: "Do not look forward to what might happen tomorrow; the same Everlasting Father who cars for you today, will take care of you tomorrow and every day. Either He will shield you from suffering, or He will give you the unfailing strength to bear it. Be at peace then, and put all anxious thoughts and imaginations." St. Francis de Sales

Milestone!!

The other nnight, Lily scooted over to our couch, grabbed onto it, stood up and witha little help managed to climb up onto it! She even tried getting her left leg up there to do it. Yay instinct! She did this three times in a row just before bedtime. She sat with us kicking her legs (thus happy) and enjoyed the new view. GO FEISTY LILY!

Hospital World

Lily went in for a cardiac cath on Monday November 30th. We ended up staying for 4 days total. It was going well the first time Dr. Wax, Interventional Radiologist, came out. Then he said that he found some collateral arteries . So he coiled/plugged two of them. That should have made her oxygen levels higher. Finally he came out to say that they found blood in the lung in the lower left lobe which was blurry on the xray we later saw. In the end, we came in with Lily sating in the mid 80's and left with a kid sating in the 78 to 84 range and added Viagra/Revatio to her list of drugs. It was either that or go home with oxygen. I am waiting to hear from our card about the discussion that had about further steps for Lily they had in conference on Monday about her.

The best thing about our stay was again the nurses. They rock!!! It was strange being back in the PICU for the first time since 2007 after her Glenn. They were fantastic. Andrea, Rachel, Megan, Tommy...kept me calm and thinking about other things like travel and language, two of my favorite topics. aside from LILY!!


One of the nurses said that she knew how to take care of these kids in the hospital, but when her son was born, she had no idea! I would have never thought of that. 5 years ago I never would have guessed that now I would be able to understand when someone says " We are going to go in an explore the LPA and coil any extraneous arteries." I could sound like a nurse of a doctor now.


Speaking of medical issues, my cousin Cindy was featured on Mystery Diagnosis on the Discovery Health Channel this past Monday night at 9pm CST. She has MPA or microscopic polyangiitis. I had no idea how absolutely painful and invasisve this disease can be to your life. I hope Cindy stays in remission! Get more information at http://www.vasculitisfoundation.org/microscopicpolyangiitis.

Lily is starting to want to stand now and not fighting us when we help her to do it. She still fights the PT/OTs though. Big surprise.

Our Anniversary

Jim and I have now been married 6 years yesterday. It almost came and went without us both acknowledging it. We had a good laugh over it. We've been so busy with the move and Lily.

I was married once before. It was rather like being on an elevator with someone where you just happened to be there with at the same time. You weren't "together", you were just there. He would get on and off occasionally while I just stayed there, alone. And eventually I gave up and got off, and never looked back.

Eventually I met and married Jim. He is the most sentimental, thoughtful, creative, funny, sensitive man --not to mention great dad -- that I know. We have been through alot in the past year. And it seems like we have had to say that every year -- my cancer, Lily's birth and the following chaos, moving, and some other things I won't go into. But the whole time he has always been there. It is just fact that we are in this together. We didn't exchange cards or gifts this year, but just knowing that he is here for us is the best anniversary and life present I could ever get.

I love you Jim.