Elle Referred

Here's your Elle update:

She was seen by her two therapists again (occupational and physical) and they were both very happy with her progress. She seems to be taking to our exercises and they are doing some good. We see them again next week. We took her to the doctor's two days ago and after asking a lot of questions and doing a few simple tests and checking her out a little and reviewing her complete history including her growth charts, he has decided that his best guess is to refer her to Primary Children's Hospital's Genetics Department. So that is the course of action we are taking. I am a bit surprised that he went with a genetic problem rather then neurological, but it isn't a total shock. I got a call from them yesterday and they can't fit us in until JUNE 28th!! I expressed a little surprise by the date and she said that they actually often have to schedule new patients 6 mos to a year out, so we kind of got lucky. We are lucky that we are close to one of the best children's hospitals in the country, people travel a long way to see these doctors, so that is pretty cool we have them so close, even though we have to wait. It is a little frustrating that we have to wait so long and it is only a guess on my doc's part that this is even the possible problem. But she will still have the KOTM people working with her and we have our reg doc, so it's not like we are totally wasting time sitting around-- we would be working with her the same way no matter what her diagnosis is, so what can you do? I'm just grateful she is my sweet little baby and is getting the things she needs to be the best Little Little she can be.

For a month or so I've been weighing how I feel about what might be wrong with her. By that I mean genetic vs. neurological. If it's genetic, there is a comfort knowing that Elinor's little genetic makeup was predisposed to be who she is and that is that. The downside and I am not an expert, but a genetic problem seems a little more scary. If it's a neurological injury, her symptoms don't seem to be extremely alarming or insurmountable. It feels like with some hard work, we can fix what ever happened to make her function at least almost normally. The downside would be the question-- what happened? She was a perfectly healthy little baby at one time, until some event hurt her and caused all these problems. I have been questioning if I did anything during my pregnancy that could have done something, or if I could have done more to prevent this, or if the doctor's could have done more. So there is a certain amount of haunting that goes along with this diagnosis.

So, it's been a lot to think about and a lot that has been rattling around in my head the last month or so. I'm trying to just plow ahead and work with her and proceed normally. And we do and we are for the most part. I struggled with the long term ramifications with all of this yesterday quite a bit. I think the best thing for me to do is just take this one day at a time, cause when I look to the future with all it's cloudy and unanswered questions, I can get more imaginative then Scout.

Right now, Elle is an absolute pure delight and almost always has a beautiful smile for me and a little chuckle and a kiss. Most mother's would kill for a baby like her, she is so awesome and happy and cute and lets face it-- how many mom's of (almost) 18 month olds have it so easy? We love you Elle, oh how we love you. We are SO SO SO grateful that we were chosen to be your parents. You have brought a joy to our household we cherish every day (not to be too cheesy, but we really do). It's so fun to see the complete joy on your face when a favorite Elmo skit comes on the tv, or your little giggles when Lola tickles your face with her nuzzles. You hardly ever complain. You are constantly adjusting to your surroundings and take everything with a grain of salt. Your sister is like that too. Although, since finding her voice, she can certainly find reasons to complain sometimes, she still bares disappointment stoically and maturely. She is and is going to be an awesome big sister to you Elles, you're a lucky girl.

Quite drooly at the moment-- getting the top canines :)

Original Comments

9 comments:

Haley said...

Oh man that hair is great!! Those pictures are absolutely adorable. Priceless. It's amazing the difference a good camera makes in the quality of pictures. Sorry you have to wait so long to find out what is going on but hopefully it will go fast for you. It's hard not to look forward and try to figure everything out. Sounds like you are taking it in stride. Hopefully they can give you some answers and you can know how to proceed from here. I witnessed her happy Sesame Street face this weekend and it was adorable. :)

March 10, 2011 1:55 PM

Anonymous said...

You guys are great parents! I love, love, LOVE the pics of your girls. Hilarious!

Ami (Hart)

March 10, 2011 7:32 PM

Amy said...

Thanks for the great update and pictures. We are all blessed to have that sweet little girl in our lives. And I'll say it again, she is one lucky girl to have such a great family.

March 11, 2011 9:36 AM

Sue said...

Sorry you have to wait so long for that appointment! It is nice we have such a great children's hospital here. Hang in there Em. I really think Elinor is going to end up having a normal life. Being around her as I have, it's just really hard to imagine that whatever is happening is going to result in a serious, life long challenge.

I agree with everyone, that she is in the right hands, you and Rob will be able to handle whatever is in the future.

She is so adorable! I need to see her soon! It's been too long since I've seen the Little Little. (Did I tell you I used to call a couple of my cats Little Little?) I think it was Eddie. Because Onan was still kind of a kitten when Eddie was born, so Onan was Little and Eddie was Little Little.

Anyway, I love Ell's hair in these pictures so much! It reminds of that woman with all the kids hair. Kate + 8 woman. Can't think of her last name. And I hate that I even know who she is, that is really lame.

Were you just in Wyoming?

March 11, 2011 2:12 PM

Cat said...

Those pictures are the greatest. I love the last one where it's all kinda dark.

March 11, 2011 6:46 PM

Emily said...

Those pics were taken when we were in Wyoming at the first part of feb, I just didn't get them immediately from Matt and then I just haven't had the occasion to use them until now.

I agree with you Sue about Elle right now, As it stands with her, she is doing ok and I think she can go on and work herself out to where she will do just fine in the long run. Unfortunately, what haunts me is the idea of her having one of the genetic problems that is progressive. One that was pointed out as a possibility for her is Rett's and that disease starts manifesting from between 6 months to 18 months. I am encouraged that typically these babies have normal development for the first 6- 18 months and I think Elle's problems have been present since the beginning, just not as glaring as they are now. So that is encouraging. She does have a few of the symptoms, but as of now no hint of many of them. One of the signs is loss of social engagement and eye contact. That's why when she plays with me,looks me in the eye, and laughs at Scout, it means so much to me. I'm terrified of the thought of losing her engagement. But this is just one thing it could be-- there is a whole host of possibilities, most a lot less devastating. Here is a link to some info about retts: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002503/

Typically the progression seems to be fast, so I am crossing my fingers, cause on many of the little ordeals of hers, they seem to be improving rather then down-sliding. For example, she ate with her left hand the other day at dinner, and has been doing it more and more. I hardly ever see her stick it way in the back while she eats, if she doesn't use it these days, it stays up front. All good things!

March 12, 2011 12:23 PM

Emily said...

What darling pictures! Elle's hair is getting so long! I'm glad you have a course of action. That's always comforting--to at least be moving forward. She is a great baby with great parents. You're lucky to have each other.

March 17, 2011 4:38 PM