William is back to his birth weight, 3lbs, 15oz and Grace is close at 3lbs, 13oz -- we are thrilled!

The babies are starting to look like babies. Fingers, toes, and bodies are filling out. They still seem fragile to us, especially when we move them out of their "bubbles" for cuddling and skin-to-skin contact. They both have long legs and seem as though they will be taller than us when teenagers (wow that is weird to write!) -- where did these genes come from? Long, thin feet always moving around. Their health is definitely improving. Grace does not seem to be testing positive for hypoglycemia any longer and William's possible bleed a few days ago seemed to be a false positive. Lee, William's nurse, applied pressure today a few times as his most recent heelstick was being a bit problematic. By the time we left the hospital this evening, his heel looked great -- no bruising, no swelling.

Today, we talked with the social worker at the Hemophilia Treatment Center at the Maine Children's Cancer Program and learned about "clinics," with Dr Rossi (pediatric hematologist), Glen Roy RN, Deb Donaldson LCSW, and occupational and physical therapy (as needed). Glen has let us know that probably William will be seen for the first time in September. We will also learn soon of when we should test Grace for Hemophilia and both kids for Factor V Leiden. Victoria learned late last year that she is positive for the Leiden, which was why she previously miscarried twice. The Hemophilia is sex-linked (on the x-chromosome) while the Leiden is not. With the human genome project, much more is known of Factor V Leiden (which can cause strokes, deep vein thrombosis, etc. -- clotting issues).

The wonderful nursing staff at CCN has been reading about Hemophilia and asking questions so we will bring a few resources to them. We are very thankful that they see us, as parents, as a resource, in addition to the hematology medical community. Victoria grew up in Fresno, CA. Fresno is now a metro area of 750,000 people, yet those with Hemophilia generally travel to the Bay Area or Los Angeles for clinics. Now fast forward to Portland, ME -- with 60,000 people in Portland and probably 200,000 in the metro Portland area, there is a world-class Hemophilia Treatment Center, with specialty clinicians in Scarborough. How lucky are we?

Our experience at Maine Medical Center has been extraordinary. The nurses and doctors have been very nurturing and caring and the facilities/physical plant is great. Folks really care about what they do and it consistently shows. We will always hold the number 220 in our hearts -- this was Victoria's room number while in the hospital.

Dr Steve, our pediatrician, is back from vacation and has been visiting the kids during the past two days. We look forward to seeing and talking with him, including tomorrow (Saturday).

With the time after 10pm, we sign off. With love and appreciation for your thoughts and prayers,

David, Victoria, Grace, William, Harry Potter and Sarah Wendy

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