Sorry it's been awhile since I've posted any updates but there has been a lot going on! As you can see in the video Stella is usually very happy and she has been very talkative the past week. She is a lot of high-energy fun when she is awake but that makes it hard to get anything extra done unless she's asleep (finally something that's a "normal mom" problem)
Stella got her glasses a couple weeks ago...when she first had them on she was just looking around for a long time (it was like she could finally see the world.) She soon discovered how to pull them down and wear them like a necklace so it's become a daily battle to keep them on her eyes-but she's pretty cute in glasses!
Yesterday, Stella's hand splint arrived - it is for her right hand to help open up her thumb and to keep her hand from constantly being in a fist. She wears it for a couple hours each day and she doesn't seem to mind it.
Medical Update:
We saw a new GI doctor that we really like! She came up with a plan and is being very proactive at helping us figure out what causes Stella to vomit. The first thing she's doing is an endoscopy - we scheduled this for Monday, June 4th. Stella will get general anesthesia and they will do a scope of her stomach to see if they can find any inflammation. It's always nerve-wrecking to give a heart baby anesthesia but we think that a scope is the best first step to figure out her gi issues.
Last Wednesday we took Stella to the Emergency Room because she had her first common illness. That day she had thrown up a TON (10 ounces in 3 hours) and had a high fever so we wanted to make sure she wasn't dehydrated. We were only there for a couple hours and they drew blood, took a urine sample, and gave her IV fluids. All of her tests came back normal and we got to go home and care for a sick baby. The next day she woke up happy and has been doing fine ever since. The AMAZING thing is that since we've been home she has only thrown up TWICE! That's only two times in 7 days (and no we're not sneaking her steroids!) We're not entirely sure what caused the change because we have slightly gone up on two of her meds and we've been taking her to a naturalistic chiropractor who has adjusted her stomach - but we gladly welcome the change.
Stella also had an EEG two weeks ago and we had our neurologist follow-up last week. The EEG was abnormal (which is to be expected with her history) but there were NO SIGNS OF INFANTILE SPASMS which is great! Stella is still at risk to have regular seizures but hopefully the infantile spasms are gone for good.
Stella's been a busy girl but we always find time to have fun and laugh each day. Here are some great pictures from bath time:
Talitha was 6 when she got her first glasses. Once she put them on she said, "everything isn't so smeary anymore." Maybe that's what Stella is seeing too! It's wonderful to see clearly for the first time.
ReplyDelete