Sunday, July 31, 2011

A Love Letter to Ikea

Dear Ikea,

This is my baby:

She's a nice little girl. Mild mannered, happy, funny.

Here she is again, eating a harmless Cheerio:She is a sweet little thing, but she has a condition. Neurologically, she struggles. She struggles to use her hands like other babies do. She has one thing down pretty good- and that is eating. I am so proud of how well she eats and the variety of foods she eats and how well she handles big bites and different textures. She is a champion chewer. She will chew something forever until she knows she can swallow it. She never chokes because she won't try to swallow something she can't handle. But anyway, that is really neither here nor there. What I really wanted to tell you is that yes, she is a great eater........ but I never said that her excellent self feeding skills didn't come with a price.

This is my baby eating:

This is what I clean up 3 times a day. It's ok, because she is a little angel all the time and doesn't get into things she shouldn't cause she can't crawl or walk. She is a 22 month old toddler that stays where I put her (try to find another one of those easily). So, I can handle cleaning up after her meals, like I said, I am just thrilled that she can feed herself so well.
The real problem lies with her clothes. She LOVES pasta so much and that as you certainly know, comes with a red sauce that stains. Even if it isn't pasta sauce, it is something else all over her clothes. Breakfast is easy, I make sure she is still in her dunglees (that is our word for pj's, I'm sure you have those in Sweden), then after breakfast I dress her for the day. Dinner is ok too for the most part- I can change her into her dunglees after dinner. Lunch, however is always a problem. Sometimes I do what I did in one of the pics and take her shirt off. WHY did I struggle with this problem day in and out? Because this:
is what passed for a bib in my house until I made a recent visit to your fine store. These bibs served Scout just fine, but Elinor laughed at these bibs and showed me what a fool I was for even putting them on. While shopping at your store, I came across this:I was just wondering........HAVE YOU MET ELINOR? Cause I am thinking that you made these bibs especially for her. Full sleeves and a pocket? Are you kidding me? What a wonderful product you have made. You have solved a huge problem in my life and have saved many a shirt and pant.
I am telling you- it is perfectly clean under there!!!!!



Ms. Emily Pugh

P.S. I was wondering if you can make a similar item for my walls and floors.

Just asking.

Wednesday, July 20, 2011


It has been a while since I did any update on Elles, so I thought I'd just write a little up. First and foremost, I think I mentioned the results of her Angelman's test on a random post, but not on an official Elle update post. She got a negative and this was disappointing because we are at peace with Angelmans and we like the thought of a diagnosis, which we can concentrate on and move forward with. Also, lets face it- we have accepted that she is severely delayed and will be so her whole life and when it comes to disorders that are in this wheelhouse, having the one that is marked by being a happy person sounds pretty good.
We didn't like the fact that it was negative also because that means more testing, more waiting for insurance approval, and possible MRI's, etc. The neurologist immediately called to get an MRI scheduled. Elle's pediatrician called and expressed his surprise that the test was negative for one basic reason: he says
that when Dr. Carey sees a patient and makes a call on what he suspects- he is almost always right. Dr. Wise (Elle's pediatrician) told me that Dr. Carey is the smartest man he has ever met in his life.

(Let me just stop for a minute and express my gratitude that Dr. Carey was assigned Elle's case. Rob and I felt instantly upon meeting with him that he was a doctor we were going to like and was going to help
us. He listened really respectfully to us (even complimented us several times on our questions), he carefully explained everything he was talking about to us in a way we could understand (well, as well as a layman can understand genetics), he also was so cute with Elinor and got a kick out of her Sesame Street stuff (including the fact that her diaper was Sesame Street themed). Anyway, we really liked him right away and were surprised to walk out of that appointment with a tentative diagnosis. This is him by the way. Before reading that I had no idea he is the Editor-in-Chief of The American Journal of Medical Genetics. Very cool and I think that no one could dispute that Elle's care is in just about the best hands possible.)

Anyway, when I was talking to Dr. Wise, he told me that the next step would be genetic sequencing and that is re
ally hard to get approved by insurance. He suggested another Dr at U of U Med Center that does research and we might be able to get him to do this on Elles as research and he supplies genetic counseling and stuff like that. That sounded pretty good, so he said he would contact him. I got a call from him that next day and he got our insurance info and was going to call them and see what he could get approved, and he would look over Elle's case and what I read between the lines was he would see if insurance would cover his costs and if not, see if Elle's case was interesting enough for him to use some of his research money on. That's fine, but upon hearing this, Rob started getting nervous that too many people were pestering our insurance and they were going to shut anything else down cause too many avenues are happening (we had gotten the news that insurance approved the MRI we weren't even sold on wanting). Rob called Dr. Carey's office himself and left a message. He and I totally agree, that out of all the doctors that has seen Elle, Carey is the one we trust the most to have the best plan for her and we thought he should be informed on anything happening to her and get his opinion on what's best. Dr. Carey returned Rob's call the next day, and agreed with him that insurance could do exactly what Rob feared. Then he gave Rob the surprising news that he had gotten approval for everything he wanted to do. Remember when we were waiting and waiting for approval for the Angelman's test and it took forever? Well, it turned out that Dr. Carey had laid out his total plan for Elles to them and gotten the whole thing approved! (kind of a: I am going to do this, and if it comes back negative, then I want to do this, and if that doesn't work, we'll do this.......) I was blown away!

He went on to explain that we got really lucky with the insurance we chose (we had two choices when it came to the kids and I happen to choose the one that ever approves tha
t sequence test) the other one never does. The one I chose is the less popular one too (by far). So anyway, that was a major blessing. The news got even better when Dr. Carey told Rob that they had enough blood left over from Elle's vial to do the sequence right away, so we didn't even have to take her in again to get blood drawn. We are all happy about that. So, we are I think about 3 or 4 weeks into that test and haven't heard anything, but we will let you know when we do. This test will map out Angelman's if it's there and most other genetic abnormalities whatever they may be. Dr. Carey also told Rob that she could just be diagnosed with being "Angelman Like" which is an actual diagnoses. Like if she isn't found to have anything specific, but her symptoms match Angelman's the most, you can be called Angelman Like and that is what you have. I think I could live with that.

As far as therapy goes, we have had some slow p
rogress this summer. With summer plans and moving, we have had few appointments and haven't worked real hard on her exercises. We have worked some though and she is doing good. We are noticing less hand clenching and her little thumbs are looking better because of it. Not only are her thumbs looking better, but she seems to grasp toys better and is eating more with her left hand. She also is starting to grasp for toys with both hands at the same time which is great news.

She also got some new wheels:

This one fits her so much better. It is a trick getting her in this contraption, but once she is in there, it fits well and holds her well and she likes it. In the past few weeks, she has gotten really deft at going backwards in it. She has caught on that she can move backwards and she does it really well. We haven't seen Betsy since, but I know she will be pleased because just the fact that Elle recognizes th
at she can get places in her walker is a great step (even if backwards isn't ideal, it should lead to forwards eventually).

Well, that's good for now. She continues to be a joy in our lives and the best little snuggle monster there is. We all just love this little girl!

"Preposterous. I swear I haven't been eating the bubbles, mom. Surely you jest."

Monday, July 11, 2011

What Emily's Been Watching, June Edition

I am afraid that June yielded very little down time. Moving is a busy busy business. Movies were just not on my mind, but I still managed to see two:

Water For Elephants (2011) [PG-13] Drama. I got a text one Friday night from a friend of mine, she was wondering if anyone out there wanted to see the late movie that night. After a week of packing, stress, and disappointment, it sounded like a great thing to do, so I was on board. It turned out that we were the only ones that ended up making it. The movie was actually pretty good. I had low expectations to tell you the truth and really didn't know much at all going into it. I knew it was based on a book, involved a circus, and had Edward in it. Because of my limited knowledge on the movie, I had two good surprises: 1. it involved an elephant (shouldn't have been a surprise given the title, but I still didn't expect getting to watch an elephant do cute elephant things) (for those of you that don't know, elephants are my very favorite animal and I absolutely LOVE watching them). 2. Christoph Waltz was in it. Waltz is a seriously interesting actor to watch. He caught the attention of everyone that ever watched Inglourious Basterds. He owned that movie and got himself a very well deserved Oscar and Golden Globe. Quentin, where ever you found that dude- well done, sir. Anyway, back to the elephant movie, he played a villainous part in this one too, with similar creepy, uncomfortable moments. Typecast? Perhaps. He may have tipped the scales of evil in this one though, cause he has some really cruel moments beating a sweet, undeserving elephant. Nazis and elephant beaters. What is left? I suppose he could always play Satan himself.
So anyway, the movie was something I probably never would have seen on purpose, but I am actually glad I saw it, cause I enjoyed myself and enjoyed the movie. The best part of the evening though was talking to my friend until at least 3 that morning in her car. We both agreed that was better for our souls then any movie. Sometimes life hands you mutual beneficial moments that you didn't expect, but are very grateful for. I was even able to be cheerful all day that next day for Scout, (it was her birthday). Emily can recommend this movie to most people. Especially if you have a rainy afternoon ahead of you and it happens to be handy. Don't feel like you have to run out and rent it or anything though.

Wow, that was a terrible and cheesy trailer. Did you see the elephant do a headstand though?

Just Go With It (2011) [PG-13] I guess it's a romantic comedy. This movie was born of a spontaneous visit to a redbox after buying some groceries, knowing I had a huge pile of papers I needed to sort through at home in an effort to pack our desk area, and doing that while watching a movie, seemed like a nice idea. I really hadn't heard anything about the movie, but saw Adam Sandler and read the little blurb about it and decided it was my best option. Best option or not, it was pretty sucky. I might have laughed once or twice, but it really was stupid and not in a Billy Madison way. Just lame. It certainly wasn't the worse movie I have ever seen, probably not even the worse one this year (Gigantic keeps that title for now), but it was not good my friends.Although, to be fair, I did get the papers sorted and will admit that it helped pass that time. You're probably better off watching something else out of that redbox, be wiser then I, there has to be a better option in there.

Well, didn't really get this one out too early in the month did I? Believe it or not, life is actually slowing down a little, so there is hope for my blog yet.


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