Can you believe it's been a year tomorrow, the 3rd, since we left Seattle Children's Hospital with Zoe. It has been one of the longest/ quickest/ trying/ rewarding years of our lives and we wouldn't change a thing. To look at pictures of Zoe when we left the hospital and to watch her scoot around on her behind and laugh and smile like crazy is unbelievable. Yes she still has a few things to work on developmentally, but to think that this same smiling happy, happy kid is the same kid that couldn't move or breathe on her own just a year or so ago is awe inspiring. What keeps us going every day is that Zoe is one of the most with it, alert, engaging children I've ever known and she doesn't know there is anything wrong with her- she's just happy to be here and happy to play and snuggle with mama and papa. She now weighs 21 lbs. 1 oz and is 30.5 " tall.
Now back to this past month. Zoe's had a rough time with eating and vomitting these last few weeks. We have tried just about everything trying to get her food to stay down better. We switched her from soy formula to a hypoallegenic formula which seemed to make a bit if a difference for a few weeks and then back to vomitting. We then tried goat's milk which worked great for a while and then vomitting started again. We then tried a perscription only formula called Elecare, which is supposedly the most non-allergenic formula on the markety, but it made her vomit more than anyrthing else- between 7-10 times a day. She was then allergy tested and it came back positive for dairy and peanut, not that she has ever had peanuts. I also think she has a corn allergy even though it came back negative. So after all of this I started doing a lot more reseach and decided to try and blend my own real food formulas for Zoe. Right now she is getting via her g-tube: rice milk, carrots, peas, rice cereal, turkey, agave syrup and canola oil. We have been meeting with a nutritionist at Children's to come up with a plan that gets her all the nutrients she needs. She is still vomiting some, but it does seem to be helping. She is much more energetic even while eating. Her skin looks a bit better, not in hives all the time anymore. It is definetly still a work in progress, but hopefully we're getting somewhere. Besides, it's rather rewarding to be making and be in control of what goes into Zoe. She has so many chemicals in her, it;s nice to give her some organic food for once.
Zoe had her first pulmonology appointment in three months last friday and they were thrilled. They thought she looked great, lungs sounded great, developing great, putting on weight at the right speed so they don't need to see her for 6 months. She will still be getting RSV shots this winter to help keep her healthy. Zoe, Jason and I have all had our flu shots and H1N1 shots so hopefully we are off to a good start this winter.
We have tried to do some normal family things this past month, go to the aquarium where Zoe tried to lick all the fish, go to her cousin Eva's second b-day party, go to storytime at the library, take Zoe to her first Halloween party (last Halloween she had surgery- a cardiac catheter). It's been fun, but a really tiring month with all the eating issues, hopefully thst will all turn around these next few weeks. Keep sending happy thoughts and prayers our way for some good GI vibes for Zoe. If Zoe has a good day, then we have a good day.....
Zoe- a year ago today!! Ready to leave the hospital for the 1st time!!
Zoe at the aquarium, loving the fishies!
Zoe as the Million Dollar Baby "MDB" for Halloween
Back view, not to shabby for a 20 minute costume!