I know, I know, It's been way to long since I've updated, but somehow I can't seem to be superhuman I want to be and I just can't get it all done. Oh well, at least Zoe is kicking some butt for me. She has had a great few months in terms of motor progression and speech. She has now been walking for almost 4 months and is now a whole new kid. She has started walking outside on gravel and unsready surfaces and doesn't get to phased by it. She often brushes our hands aside when we offer to help and says " I do it". She is still a bit hesitant about stepping from stone to stone or up and down from a curb, but she's trying. it's amazing how big her legs have gotten since she started walking. She used to have these bean pole legs and now there is actually a thingh and calf muscle.
She just had her evaluations for the school district pre school and did really well. Her fine motor showed only a slight immaturity, her receptive speech was spot on where a 3 year old should be and of course, like we already knew, her gross motor and expressive speech are delayed quite a bit. Her gross motor is around that of a 13-15 month old child. What was interesting about the testing though is that all aspects of gross motor were pretty similar which means she is just delayed and catching up on her own schedule. makes sense since she didn't do much moving for a year and half or so. She will be startign with the Bainbridge School District in the fall at Wilkes (my old elementary school) with a really great teacher. Jason and I got to go sit in class a few weeks ago andobserve. Such a great set up and the teacher is AMAZING. We took Zoe to meet her last week and it was mutual admiration at first glance. She will be going to preschool for 2.5 hours a day for 4 days a week. The school staff will be trained in how to do her IV med so that I don't need to be there all the time. This means I actually get time to exercise 4 days a week for the first time in 3 years - YEAH!!
Zoe recovered from her cardiac cath and PDA closure quite well. She was in O2 for a few days but came off it quite easily. We took her back in for an ECHO a month later and the numbers didn't look any different. her lung pressures were still in the 70's. It was a bit dissapointing, I think I was hopign it would make an immediate differnce but it didn't. her cardiologist isn't too worried, she juat said that now we know exactly what we are dealign with in terms of zoe's PH and that the PDA wan't the entire culprit. We have gone up on her Sildenafil (baby Viagra) does a bit as well as her IV med. She also just started a 3rd PH drug last week which works to combat PH in a differnt way than the Floland and Sildenafil. The hope is that the three together will make a difference.
Zoe had a bit of a wierd week last week, on Tueday AM she got super blue all of a sudden, bnot what you want to see in any kid, let alone Zoe. We bumped her O2 up to 1 Litre and than seemd to help some. I took her in to the pediatrician for x rays and they looked fine so we scheduled an ECHO at childrens on Wednesday. The ECHO looked great, in fact her lung pressures were down in the 60's. Tehy started her in a 5 day dose of antibiotic and it seems to have helped. There is still no real explanation for what happen, the only thing we can think of is that her bottle of Sildenafil had almost expired so maybe the potency wasn't quite as strong as it should have been. Anyways, since then, she has looked great. Nice and pink adn back to eating tons.
We also just got (or I should say, may parents just got) Zoe a drysuit so she can go swimming. Becasue of Zoe's central line, she cannot sit in water or get it wet. Her baths have always consisted of 2 minutes in the water with a plastic patch over the line. The new drysuit allows Zoe to be totally in the water and play like a normal kid. We took her down to my parents jaccuzi tub last week and let her splash around- SHE LOVED IT!!! She sat in the water for over an hour just playing and rolling around. She played on her belly adn kicked her legs like she was swimming, she put her face in the water, all is all she had a blast. Hopefully this is the start of many summer days in the water.
In addition to all this, Zoe got her first tricycle, pulled her G-tube once and for all, got a big kid bed, discovered the joys of cooking and baking and discovered how fun it is to be a mommy to her own baby dolls (even though she likes them naked as possible at all times).
I'm sure there are more things I'M forgetting but for now I'll let the pictures speak for them selves. Thank you as always for all the continued prayers and support for Zoe and all of us. Happy Spring!
moments before we pulled Zoe's G-Tube!!! March 2nd, 2011
2 more of Zoe's buddies who did a successful rapid wean at Seattle Childrens
Zoe with her beloved baby stroller and Dolly
Zoe loving on Auntie Courtney's new baby, Claire
Zoe on her new tricycle
Zoe and Eva (with Thumper) on Easter
Zoe and Papa on Easter at the Henry's
Zoe riding a pony at the Corey Day at the Farm for Special Needs Kids
Zoe in her drysuit- ready for summer fun!
Zoe and Sara Rawlinson with their backpacks. Sara has been one of Zoe's biggest supporters and now we get to be hers.