Wednesday, April 29, 2009

Doctors' appointments

**First, a quick update on Sofi. She was off of ecmo, extubated and doing really well! Then tonight there was a set back and she had to be intubated and have another chest tube placed. Please continue to pray for this little girl and her family.**

Julianne had appointments with her new Neurologist and G.I. doctors today.

The Neurologist was impressed! She couldn't believe how much Julianne talks. I even heard her talking about it in the hallway after she left the room. She said Julianne has low (muscle) tone, which we already knew, but that her tone feels even (she was expecting some weakness on one side). Other than that, she didn't have much to say. She felt that Julianne isn't really behind developmentally other than not being able to walk yet. That was nice to hear. Julianne will continue to follow-up with the Neurologist and will see her again in July.

The G.I. doctor had a very....abrupt(?) personality. The appointment was basically just a "history of Julianne" lesson. She didn't have too much to tell us other than she'll refill Julianne's prescriptions and if she hasn't started eating more by her next G.I. visit in August we will discuss having Julianne seen at a feeding clinic.

We did have something really awesome to report to the G.I. doctor. Julianne's gagging is down to about once every 3 or 4 days. Even when she does gag she's been getting it under control. We are so very, very, thankful that this gagging seems to be minimal now. We have prayed for relief for Julianne in regard to the gagging for SO long and we are SO glad that she is doing a thousand times better! This hasn't just been for a week or two either. Its been about a month or so of next to no gagging!!! Thank you, God!

In feeding news, we are in the process of transitioning Julianne to a "blended foods" diet. "What's this?", you ask. We tube feed pureed foods or jarred baby foods and other soft foods, such as yogurt, mixed with water or milk with a big syringe. Julianne has done really well with this! She's able to take more volume and calories at each feeding than she has in the past getting just formula, which means she can get less feedings per day. Actually, it was around the time we began doing one blended food feeding per day that the gagging started decreasing. Whether changing that ONE feeding could cause so much improvement or not, I don't know, but we will take it for sure! We haven't gone beyond one blended food feeding per day yet because we want to talk with a dietitian about nutritional requirements before we change anything else. We have an appointment with the dietitian next Thursday. Hopefully, soon after the appointment we'll be able to complete the switch!

We have therapist meetings tomorrow and Julianne has an ophthalmologist appointment on Friday. If you remember, at her last ophthalmologist appointment we were told Julianne has a significant astigmatism of 3 diopters and needs glasses within the next 6 months to a year (well, 4 months to 10 months now). Its just so hard to believe because she seems to see so well! We don't want her to struggle more than she has to and if she really does have a vision problem we'll do whatever needs to be done. We just want to know that she really NEEDS glasses before we get them. *Sigh*....I guess it just came as a shock when the doctor said she needs glasses and we're still not over it. You'd think we were used to shocking moments by now, right? Please pray for wisdom for the new doctor and that he'd see exactly what he needs to see to help us make the right decision for our baby boo.

Thanks so much for checking in on us! Julianne is learning new things everything and its such a joy to watch and experience with her. I will update on Friday after the Ophthalmologist appointment and will post some new pictures. :)


Allison said...

Oh come pictures????:)

Really good to hear that the gagging is under control! That is great news!

Thanks for the update, always love reading about Julianne!

Julie Miles said...

So glad to hear that Julianne's gagging is getting under better control and that she's also not dev.delayed except for walking. She seems to be making up for it though with her talking! Praying for the opthamologist appt. on Friday.

Anonymous said...

Did she see a ped gastrologist from LSU? I hope not as this is G's doctor and we love her! Her initials are ER-A, at the BR General. Kelley

Anonymous said...

Julianne is doing so well. Hope you can hold out on the glasses as long as possible. At least till after her next trip to Boston. Can't wait to see you all in a few months. Hope you find your own place by then and grammie has her brand new kitchen too. Love you all.

Anonymous said...

We're thrilled to hear she's doing so good. We will continue to pray that she continues to get stronger and stronger every day!!

Luv you all
A. Stac

jan tompkins said...

Thanks for letting us strangers check in on your Julianne. I, too, missed seeing new pics of her, but will check back since you said you'd put some up tomorrow. She is a true little doll baby. Always excited to read more about her. Came here from Annabelle's blog. God Bless!