Family and friends- Sorry I have not updated sooner than this but life happened and I got a tad bit busy 😜
Last week on Wednesday (April 8th), Annalise had a couple check ups. First we went and saw her neurosurgeon to follow up with her shunt surgery and get her stitches taken out. Then we went and saw her pediatrician for her 2 month well exam!
That day was a very long day for us. We were at the hospital for a total of about 4.5 hours! Let’s just say when we got home we both took a long nap. 😉
Anyways…. After about an hour of waiting, we finally got back to get her stitches taken out. Baby Girl did NOT like that. She squirmed and made her noises the whole time. Poor thing. But here is a cute “selfie” I got with little Miss while we were waiting and also a before and after of her stitches!
After getting her stitches taken out, her neurosurgeon came in to look at everything. The main thing I was concerned about was how her skull bone is pushing on the shunt. Luckily he said that he is not worried about the bone or the shunt because both are pretty strong and durable but that he is worried about skin breakdown. “I can always fix a shunt but I can’t fix skin breakdown” is how he put it. So… we have to go back next week so he can re look at it and make sure it’s still okay.
While I had him in the room, I asked him about the MRI we had done. We had never officially heard the results — except that it was the same diagnosis as the last ultrasound (the hydrocephalus and hydranencephalus). He pulled the images up on the screen and told me what he saw. He pretty much said that he wouldn’t call it hydranencephalus (because there are many different definitions of it and from what he understood that meant she had no brain) because she did have some of her brain and brain tissue. So who knows what “disorder” she has. We have grown accustomed to the doctors not really knowing what to say but trying to be as informative as possible. 😉
Anyways…. The simplest way to put the results is that she has the bottom front of her brain and a very small amount of tissue in the front. He said that she has her temporal lobes for the most part which is what controls her hearing. So Annalise pretty much only has the part of her brain that allows her to hear.
So according to him, she won’t be able to crawl, walk, talk… Basically everything except breathing, eating, sleeping, and hearing (which is what she has been doing). I asked about vision then because she does respond to light and he said she is most likely blind because the part of the brain that controls vision isn’t there. He said the eyes dilating and responding to light is more of a reflex type thing that the brainstem can do on its own. Upon hearing this, we have set up an appointment with the pediatric optometrist next week to finally know for sure if she is completely blind or not. The more we have watched her now since hearing this, the more we think she is “looking” by sound instead of actually seeing. But! We will find out next week!
After finishing up with the neurosurgeon we then headed over to her pediatrician. Her pediatrician did a full exam for her 2 month check up. (Yes we did it a week or two early because she was “behind” on her immunizations and what not.) But- Can you believe she is 8 weeks old tomorrow?!? Time really does fly by.
Her pediatrician checked all her vitals (which were good- like always), checked her reflexes (which she has all the normal baby reflexes!!!), checked her weight (which she was about 8 lbs 2 oz), and went over everything else we needed to talk about.
According to the lovely growth chart doctors go by, Annalise is in the 50th percentile of height and only in the 5th percentile of weight. Because of this we had to up her calorie intake and try to get her to take more amounts during the day. She is actually handling this change very well so hopefully she starts bulking up soon! 😜
One thing I don’t think I have ever mentioned on here is that baby girl does have small tremors. It’s mainly when she is stretching and moving her muscles but it’s something we have to keep our eyes on because it could be a sign of seizures. Because they are everyday though, we will be meeting up with our neurologist sometime soon to look into it. We want to essentially “stay on top of it” for if she does end up getting seizures, we will be ready and know what to do and get her the necessary medicine or whatever to help with it.
We are also in the process of getting her started on occupational therapy and physical therapy to help with the little amount of brain she does have. And if she is blind then I’m sure there are things we will need to do to help with that as well. Hopefully we can get the therapies started here in the next week or two!
Also during her 2 month exam, Annalise got the first 6 immunizations every baby needs. She didn’t even flinch for those shots. And luckily she wasn’t irritable after them! She never even got a fever! Woohoo!
Overall, her appointments went fairly well and she was a trooper through it all! I’m just always so proud of her. ☺️
There were a couple “fun” things that happened last week for Miss Annalise.
For the first time, Annalise found her mouth. 😂 Since she has been having her hands all over her face lately, it was bound to happen. One morning, her hand moved across her face until her finger went into her mouth. She sucked once, made a disgusted face, and moved her hand away from her face. It was quite hilarious. I’m pretty confident she probably won’t be a thumb sucker after that reaction!
Along with finding her mouth for the first time, she also found her foot for the first time last Thursday! Now, almost every time she is stretching, she goes for her foot. 😊 The other night, when she got done eating, she was sitting in my lap, just holding her foot. So cute!
Well… That about sums up the past week with Miss Annalise!
I do want to say thank you to my co-workers and families from my job that put together a little baby shower for us this past weekend! I was so overwhelmed by the love and support from you guys!!! You guys are amazing and we are so thankful for each and every one of you!
Since I know y’all like pictures of our little princess, I’ll leave you with a few! 😊
I hope y’all have a great rest of your week and remember to anchor your hope to the One who has already scripted the perfect ending! 😉😊