Learning to Dance in the Rain

Stella rocking her eye patch

So we've made a few changes in the past week. 

We saw a new pediatric ophthalmologist who determined that Stella's right eye is weaker than her left but she also has astigmatism in both eyes. We hope to help this without surgery by "patching" her left eye for an hour each day and to get baby glasses. 

Stella has been off of the steroids for two weeks now and we have not seen the infantile spasms return but the vomit rocket has rejoined our family. It has slowly gotten worse each day and we are not sure what is causing her to throw up and why the steroids stopped the vomiting. She will have an EEG next week on Wed May 16 to make sure there is no signs of infantile spasms and to make sure that the seizure med that she is on, Keppra, is stopping the other type of seizures that her last EEG was showing. We're hoping that the EEG shows no signs of the infantile spasms and that the vomiting coming back is not an early sign of the spasms returning. We have an appointment with an ENT (ear, nose and throat) doctor this Friday to see if there could be some inflammation in her stomach or esophagus that is causing the vomiting and we're praying that we finally get some answers. Stella hates throwing up, we definitely hate watching her go through vomiting/dry heaving multiple times a day and it would be nice to not be covered in vomit (especially when it happens in public and I don't have a change of clothes) and to not have to do 1-2 loads of vomit laundry each day. The return of the vomit rocket has also caused Stella to not want to eat as much and we have gone backwards on the progress we were starting to make with baby food and water. 

Stella had her weekly Occupational Therapy today and with the help of our therapist we have decided that it is time to get Stella a splint for her right hand. We were hoping that her right hand would open up more with the therapy but she constantly tucks her thumb in her fist. 

Today we went to try on glasses for Stella to see what size she needed. I guess I was feeling a little overwhelmed with everything that has happened this past week and all of the changes because seeing her in glasses made me cry. So I'm gonna share my little pity party real quick but I'll preface it by saying that I am so thankful for Stella and the progress that she has made since we brought her home from the hospital in August - she is amazing and where she is at now is very encouraging. But having a child with special needs there are often days that feel discouraging - today was one of those days. Most of the time I am able to find the positive and "dance in the rain" but today I just felt like crying in the rain. We already get a lot of questions and stares when we're out with the feeding pump. Usually it's "Oh, what's wrong with her." I HATE THAT QUESTION! It's not one thing that is wrong but it's a lot of things that are different and I don't think the curious people (who really do mean well) know what they are asking with that question. It's not a simple answer. Well now we get to add on eye glasses (and I know kids in glasses can be really cute but the baby glasses look like swim goggles and they really aren't that cute), an eye patch, AND a splint on her right wrist. I just want to be able to go in public and get the normal responses of "she's so cute," or "how old is she" but it's hard for people who don't know Stella's story to see past the differences. I just wish they could see what we see - her contagious smile, her adorable laugh, her pretty hazel eyes, and her very social (and often stubborn) personality. 

I honestly don't mind answering questions about Stella and I love being able to share her story, because I think she's pretty incredible and I know her story can touch a lot of lives. I just think there's a much better way to approach it. I guess since Stella is throwing up again we could use the vomit rocket to scare these people away - nothing ends a party like getting thrown up on  (don't worry, I'm just kidding!)