Not a ton has gone on in the last few weeks, so there's not a whole lot to say. But I'm pretty good at rambling so let's see if I can turn that "not a whole lot to say" into several really long paragraphs.
RSV and cold/flu season is upon us, which means that we are limiting the places where we take Elsie these days. If there will be a lot of children or big crowds of people, we unfortunately can't take her with us. The risk of her catching RSV and having to be re-hospitalized is too great. I read a bunch of stories on various preemie websites about babies that had to be hospitalized due to serious illness from RSV, and even babies who have died from it. Scared the crap out of me. Needless to say, we are trying to be very careful about germs and limiting her exposure to sick people. Sanitizer is our friend. On a positive note, our area has not yet seen a big outbreak of RSV yet this season. Once Primary Children's Hospital has reached a certain amount of cases of RSV, then they will send a statewide alert to pediatricians and doctors offices, giving "permission" for them to start administering the Synagis shots. Have I told you about those yet? Synagis is not technically a vaccine for RSV, as it won't prevent the illness, but if a baby catches RSV after having had the shots, it will help to make their illness not as bad. The shots are given once a month during RSV season and are extremely expensive, which is why the doctors have to wait to get authorization before they can administer the shots. They have very strict guidelines about who qualifies for Synagis, but luckily (or unluckily, ha ha), Elsie meets like three different qualifications because of her prematurity and chronic lung disease. So as soon as we hear from the doctor, then Elsie will get the Synagis shots until April. Yay for shots once a month! Not.
We had an awesome feeding therapy session this month. Helene introduced Elsie to "hard munchables", or food that she can put in her mouth not necessarily to eat, but more to experience different flavors, textures, and to practice chewing. We had been at a bit of a stalemate lately with the baby food purees; it was hit or miss on whether Elsie felt like eating it or not. Sometimes she'd enjoy it, but a lot of the time would turn her head and clamp her lips shut to avoid the spoon. And so we gave the hard munchables a try. We gave Elsie pretzels and licorice sticks, what a fun combination, and she was so fun to watch as she tried these new flavors. She did really well and seemed to enjoy herself. Helene also suggested that instead of just baby food, which can be a little bland, to tempt Elsie's palate with purees that have more taste and flavor, like adding cinnamon and butter to pureed fruit, and spices or salt to veggies, etc. Since Elsie gets all of her essential nutrition through her G tube, we're not worried right now if she eats unhealthy food by mouth. We are just trying to get her interested in eating and for her to enjoy eating. So we came home, I ran to the store to buy a bunch of things on the list that Helene gave me (beef jerky, dried mango strips, those big thick pretzel sticks, and a bunch of Twizzlers, to name a few), and was so excited to show Clayton Elsie's new skill. Gave her a big pretzel and . . . she threw it on the floor. Tried all of the techniques that Helene showed me while we were at therapy, and Elsie wanted nothing to do with it. Mixed up some "flavored" fruit puree, and she hated it. Started crying, even. Sigh. This is why I want Helene to come live in my basement and take over as Elsie's personal feeding coach for the rest of her life. Ha ha, not really, but it seems like magical things always happen while we are in Helene's office, regardless if it is me or Helene who is working with Elsie, but then I can never re-create the magic when we get home. It's very frustrating! Since then, we still try to encourage Elsie to eat by mouth, and the majority of the time, she turns her head away, but sometimes she will have a few spoonfuls of food or will put the dang pretzel in her mouth. Then there was the time a few days ago at my sister's house where Elsie chomped on a Twizzler for a good ten minutes or so and got red stickiness all over her face and hands, not to mention all over my shirt, and I was thrilled. It's a long and frustrating road, but we are taking little tiny baby steps and ever so slowly, we are progressing.
We had our first physical therapy session with DDI, which is our local branch of Early Intervention. Basically, I loved it because the therapist pointed out everything that Elsie was doing awesome at, which just seemed like ordinary things to me, but she explained how hard Elsie was working and how this step would lead to the next step and the next and the next, and I realized how well Elsie is doing, despite all of my worries. She has overcome so many obstacles so far, and yes, she is a little behind in some of her skills, but she's getting there. She will continue to overcome and conquer.
|Tasting a cracker|
|Being able to reach and play with her toes is a HUGE step in development, believe it or not!|
|Just playin' and chillin'|
|Evje was a pretty ballerina!|
|Seriously, getting this kid to hold still long enough to take a|
picture can be a real chore!
|Finally got a good smile!!|
|Dancing like a ballerina!|