Just a few updates!
Time is flying! It seems like we were just coming home from the hospital. NICU nurses on speed dial and the list of every Dr under the sun wrote on every piece of paper we could find. Has it really been four and a half months already? Our little girl is growing up so fast and developing such an adorable personality. She loves to play bashful. She dips her chin to the side where it touches her shoulder and gives the most adorable grin ever....boy her daddy is in for trouble!
She has been reaching a lot of milestones lately. She is so close to rolling over but she still hasn't figured out how to move her leg and arm out of the way. I think she will get it in the next couple of months. She started reaching out for items the other day. She actually came to mid line to reach for a leg warmer I was holding up. I give her another couple of weeks and she will be flexing her fingers to grasp the item.
She is such a smart little cookie...which gets her in to trouble :) She has figured out that if she grabs her g tube cord with her toes she can bring her legs up so that she can reach the cord. She then yanks and pulls on it like she's trying to get a push mower started lol. I swear she's going to rip that thing out one day.
She is holding her head up all the time now and doing great! I'm working on her trunk muscles now so she will eventually sit up. We do our physical therapy several times every day and it's amazing the difference you can see from day to day. Last week she actually put pressure on her legs for the first time.
And here is the BIG one....she SUCKED a bottle!!!!!!!!!!!!!!! Yep, you read that correctly! She sucked around 1 ounce out of the bottle and swallowed around half of that if not a little more. I am SUCH a proud mommy :) She has done it once since then and she just amazes me. I started adding thick-it to her bottles to help her swallow and it seems to be helping a lot.
So here comes the medical part of the update...I'll just go over each item in a different section...
Cataracts: At our last appointment he didn't say anything about them so I am guessing they have stayed the same...no larger, no smaller. They are not interfering with her vision so it really isn't a big deal.
Nystagmus (A rapid, involuntary, oscillatory motion of the eyeball.) : Its about the same still. It gets much worse right before a seizure so I have learned to look for it to prepare for a bad night.
Full brain and partial seizures: Still not better. She has a lot of issues at night. We can go a week with little activity at night then all of a sudden we get three days of constant nightly activity. It's exhausting but at least she is calmed a bit if I hold her all night. Luckily the worst nights have happened during the weekend so I can hold her the entire night and then as soon as the hubby wakes up I can go catch some sleep and we trade off.
Her neurologist has since upped one of her night time doses of anti seizure medicine and it seems to help a little. We have a follow up appointment here in the next week or two and they will probably up her medicine yet again. We are in the process of waiting for an MRI through the local children's hospital. She has to be put under for it and it evidently takes forever to get an appointment. They said we could be waiting around 10 months.
Oral aversion: completely gone! It's actually been gone for a few months now. She's teething like crazy so she will stick anything she can get her hands on in to her mouth to chew on. Bless her heart. She's been teething since around 4.5 months old and not a single tooth has come through or even looks like it is going to come through. I'm about to call her Cardiologist up in Birmingham to see if it is ok for us to use the teething tablets with her.
Taking a bottle: as you read before....she is slowly getting there. She has taken a bottle twice and sucked one ounce of the bottle each time and drank about half of the ounce. We are SOOO very proud of her!
Her heart: After having been back in the hospital and getting the heart cath it seems the pressures in the different chambers of her heart are fine. We are still having to keep a very close eye on it though because she still has a 3mm residual hole, an lv to ra shunt and a coarc of the aorta.
Liver: we have to get more blood work next week to check her liver enzymes to compare them to the blood levels last month to make sure they are not rising.
GI surgery: We will be setting up V's first appointment to get her Mic-key changed. This will be the first scheduled change because all of the other ones were only changed because the balloon popped inside of her. Boy am I glad those days seem to be behind us! I still don't think I will be changing her button at home. I would prefer to bring her in and let the Dr do it for the simple reason that I have had to watch her suffer so much and have to be the bad guy holding her down during stoma dilation, mic-key changes, seizures, countless blood draws etc. I refuse to be the bad guy anymore. The Dr will just have to do it. For most it is not that painful for the mic-key change but for Violet it is excruciating even with Morphine.
Gastrointestinal issues: They are thinking she might have reflux now but aren't sure. We are trying her out on reflux meds just to see and if it doesn't help within a month we will be doing a scope to look for other possibilities like with her liver. She's been grunting and groaning all day long and will start screaming out of no where. She is acting exactly like she did when she had the protein intolerance until we switched her to Elecare formula. They said if it turns out to not be GI related it could in fact be neurological related....it's just yet another thing we will have to wait and see about.
physical: She is lifting her head like a pro, lifting herself slightly while at an incline, rolling halfway and discovered her feet a few weeks back.
Even on her worst days she is a joy to be around. Sure I get tired and cranky like any other new mom does. But hey, that's what a good hubby is for. I look forward to the weekends because I get to catch up on sleep! Oh glorious glorious weekends!
