Sorry To Keep You Hanging

Hope's sedated echo looked good. Heart function and size were totally normal. We also just got back the results from the development psychologist who tested her as part of the feeding study -- again, totally normal.

Thanks for caring!

Back at CHOP

Today we are back at CHOP -- don't worry -- for a sedated echocardiogram (ultrasound of the heart). Part of normal care for TGA kids at one year old. Hope's cardiologist has been performing non-sedated echos in a satellite office about every two months, but as she becomes more active it becomes harder and harder to get good pictures of her little heart. As we sit here in the waiting room, it just feels natural to write. It totally brings me back to our experience just over a year ago. I even ran into another family who was here at the same time that we were. Small world.

Yesterday, we had a speech therapist out to the house to evaluate Hope's speech and cognitive development. Hope was awesome. That's not just me talking either. I know I'm more than a little biased, but both the speech therapist and the developmental psychologist -- who saw her on Wednesday as part of the feeding study -- were really impressed with her and her abilities. It's easy, especially in these really busy weeks to get into a funk and to forget how truly blessed we are -- knock on wood, for as I type this I'm afraid I'll jinx her echo results. But every day with her and our other children is such a blessing.

Now, if I can just enlighten the boy to this same way of thinking. Blessings!

Its Official, She's Toddlin'

Hope is now walking the length of entire rooms. She's been taking steps on her own for a few weeks now. Many times it's been at the request of Mom and Dad, who are dying to see her pass certain milestones, especially given her unique and auspicious start. But about a week ago, we were all trying to get out the door, and about halfway through admonishing Shane for not having his shoes on, he shouts out, "Look, Look! She's gonna walk!" And sure enough, she ended up taking about 7 steps. It's been touch and go since then, she was just diagnosed with bilateral (both sides) ear infection which I think messed with her balance. It's actually funny since Liv had a very similar deal at around the same time. But now she's back to it. Liv had a palydate today, and when the other little girl's mom came to pick her up, Hope was in total show-off mode. She was walking through entire rooms. She's a toddler.

Fun in the Basement!

Yesterday was a rainy day, so we had some fun down in the basement. Hope loved this. And no, they're not going as fast as it appears!

Hope is One!

I can hardly believe that Hope is one! In many ways, it seems like just yesterday that she was born, and in many ways, that nerve-wracking, blessing-filled experience down at CHOP and HUP seems like a distant memory. It is amazing to me how much this little child has taught me about gratitude. I am grateful that we are so blessed to live in a time where skilled surgeons can successfully repair there life threatening conditions on such tiny children. I am grateful to have such a caring and nurturing network of friends and family who's prayers, thoughts, and concerns buoyed us through this experience. Thank you all!

Hope continues to be a joy. She is outgoing, and is constantly trying to engage people wherever we encounter them; the grocery store, schoolyard, playground, doctor's office, etc. When people somehow fail to notice her -- which she seems to not be able to fathom either -- she leans in and tries to engage them with her smile and often a friendly "hiya." She is incredibly enamored with dogs and other children, especially babies. Her whole body stiffens and shakes with joy whenever she sees a dog. I am amazed how she has no fear of any dog, regardless of size. Hope also has this remarkable relationship going on with Olivia's pre-school teacher -- who is, herself, a remarkable person. Whenever Hope sees her she practically dives out of my arms to have this woman hold her. Many times, I am asked by others, "Is she always this happy/friendly/easy/etc?" The answer is always a resounding "Yes!" I used to tell people that I thought she knew what's she's been through and that she's just happy to be alive, and while I still believe that to be true on some level, I am also sure that a large part of her ease, contentment, and joie de vivre comes from all the love, caring, and prayers that she has received in this first year of life. Thank you to all!

6 Months!

Hope is officially six months old today. And such a joy. She remains incredibly happy and sociable. She is sitting on her own and doing a little bit of "scuuching". Crawling can't be far off. Not sure if that's a good thing or a bad thing. I've got my hands pretty full, so I'm not sure if I'm ready to be chasing her around, but, by the same token, it might allow me to put her down a bit more. At present, I can only put her down for short periods, especially when I'm really trying to get something done. Like cook dinner. Almost every night, I'm preparing dinner like I'm preparing for a tandem ski dive. It's a little dicey removing things from the oven with a small child hanging off your chest and belly.

Thanks for checking in! Pics soon!

More Pleased to Meet You!

As Hope gets out and about more and more, she is able to meet more and more relatives. Most recently she had the pleasure of meeting my brother, her uncle Scott. Yesterday, she got to meet more of Mon's siblings and their families. Sorry, no pics. Given the size of Mon's family this could take years!

Alarmist?

Not too long ago, we had a visit with our pediatrician. At that visit, everything went really well. However, our pediatrician told us that if she could have her way she would want no one under 12 to touch Hope for the next 2 years, but she would be happy with the next one year. She told us to instruct Shane and Liv to kiss Hope on her feet and the back of her head where germs were less likely to find their way into her nose and mouth. She recommended that we get some mosquito netting that attaches to her car seat and stroller to help keep dirty hands and kissing lips from invading her space. Her concern, and I totally understand it, is that with Hope's cardiac history, she is more likely to have some sort of respiratory distress if she were to get a respiratory infection. I understand the concern, and we'll do our best to follow her recommendations, especially around hand washing, but, hey, I don't think she needs to be kept in a bubble.

The other day I had Liv and Hope at the park, and of course I'd forgotten her mosquito netting, and just about every little girl in the park (and a few boys) kept following us around trying to touch Hope. Normally, with the netting this is not a problem, the netting is just opaque enough that one doesn't really see Hope without knowing she's in there or looking really hard. Regardless, this one girl about 4 or 5 years old was just about to touch her and I asked her not to. Despite my efforts to explain Hope's situation, this little girl was obviously disappointed to not be able to touch the baby. She walked off dejected. Later, I saw her on one of the climbing toys. She very matter of factly told me that I was not allowed to play on the climber. I was too big. Tit for tat? I think so. I guess we're even now.

Nice to Meet You!

Hope finally got to meet her Great-Grandmother today! Hope had skipped Easter at Nonna and Pop-Pop's, which would have been a great chance for the oldest and youngest of our clan to meet, because we were still a bit nervous to take her out into large crowds during cold and flu season. Regardless, Grandma was very proud to show her off around the community where she lives. Hope and Olivia were both very, very well behaved. It was a great visit that seemed to fly by all too quickly.

Long Time

Well, it's been a long time since I've updated this and I've been getting a little bit of good natured ribbing about it. People really seem to have enjoyed reading my drivel and following Hope's progress. Hope is doing great! Thanks again -- I hope people aren't getting sick of me saying that, but we really are appreciative of all the love and support we've gotten/been getting throughout this process. At her most recent cardiologist appointment, the cardiologist gave a very positive report indicating that it should be normal pediatrician stuff from this point. Did you hear me knocking on wood? Yeah, yeah, superstition = false religion, yada, yada, I'm still knocking. But back to Hope, she's really developing into a little person. I don't think I'll ever tire of seeing that transition -- the one of little pooper/eater/sleeper into a real live person. Hope is now smiling and laughing and even trying to talk. When you give the chance to respond after a question or just about any old thing you say, it's so cool to watch her trying to respond. There is such energy in her efforts to form her little mouth and tongue into some shape that she thinks might make a sound similar to the one's we're making.

Tonight, we took the three kids for some long overdue portraits. We used this guy who was one of the respiratory therapists we met during Hope's stay at the hospital. He did a great job -- look for a new album in the right nav very soon.

Oh, and speaking of long time, Hope has slept for seven hour stretches for two nights in a row now. Despite my previous stance on the matter, sleep is good.