We arrived home on Saturday evening after a long journey. Our ride home ended up being longer then expected because Ali seems to have a very low tolerance for her carseat and we had to stop every 20 minutes or so because Ali was having trouble breathing. About 10 minutes from home she decided to pull out her feeding tube too which made Mommy very happy!

We arrived home, I put the feeding tube back in, Jason picked up Madi and we all went to bed. Since then we’ve done nothing but run around the house like crazy people.  It is absolutely nuts.

Ali has had some difficulty adjusting to the formula that we were sent home with. It’s a powdered version of the hospital formula but she found the liquid hospital version easier to tolerate. The liquid version isn’t available for use at home so we’re working with the concentration and volume to try to find something that works for her. As a result of the formula issue, Ali has lost some weight and she throws up all the time.

We’ve started working with the genetics nurse to gather information about our family histories. Ali will be having a full genetic work up. Specifically they are looking for “Noonan Disease” but they’ll also be ruling out any other conditions.

We have started the process of teaching Ali to feed from a bottle. I don’t have any great successes to report but I can say that Ali is eager to try to drink and she seems to really enjoy the feeling of the bottle in her mouth, she just has no idea how to swallow her milk!

Ali has her first group of appointments scheduled in the city. We will be going on February 18th and 19th to meet with the feeding team (nutrition, feeding therapist, nurse), her new pediatrician, her geneticist and her cardiologist. She will also be having an echocardiogram, and ECG and a Holter Monitor test.

Thanks to everyone for all your support. Reading your kind and encouraging messages has meant so much to Jason and I. We will update again when we have time.