The Harp Lady

This morning Sadie and I had a visit from "the harp lady" as we so affectionately call her. Her name is really Jocelyn and she works for Hospice of the Valley. She comes to play for us and do music therapy with Sadie via a grant that Hospice of the Valley got. She's been coming for months, and even if she didn't play her beautiful harp and sing songs, I'd still love her visits because she is one of those people that just lights up the room when she walks in, and instantly you feel better when you see her!

She's been here 5 or 6 times, but today was the first time Sadie wasn't screaming. The first couple of times she came, Sadie just screamed the whole time while Jocelyn played. I think the music was more for Brian and I at that point!! Then we had some marginally screamy visits, ones where as long as I was bouncing or rocking her, she'd be okay. But, this morning was different.

Jocelyn came over and played her harp for about a half hour. In the past, she's only played really soothing music, but today she sang itsy-bitsy spider and twinkle little star to Sadie. I was in the other room on the phone, but I swear I also heard how much is that doggie in the window!! What a fun song! Then she got down on the floor with Sadie, who was sitting in her blue Tumbleform chair and gave her bells and a maraca and they sang songs "together"!! She had bells she put around Sadie's ankle, then she got Sadie to actually hold the hand bells, and she helped Sadie shake while they sang Jingle Bells (I know...it's June, but whatever!)

You could tell Sadie was stimulated and really enjoyed it. She loves music so much. And I love Jocelyn. Lucky for us, she gets to come back again in a few months!

Sadie's day with Grandpa and Nana

Yesterday, Sadie and I drove all the way out to Grandpa and Nana's house. Even though it's an hour-long trek out there, I am thankful that I have family nearby to offer some support. Brian has been in Vegas all week for work and I just needed to be around some people. Plus, they love Sadie and are happy to give me a break when we get there.

Sadie hung out with Grandpa while he worked on his computer while I took a nap. I could hear her "talking" to him in his office. But the best part was when Nana got home from work. I had Sadie propped up on the couch between two pillows (sitting like a big girl) and I was sitting on one side of her. Nana came and sat on the other side, so Sadie was fully supported. She started talking to Sadie and touching her hands and Sadie started whining a little and getting fussy, so I grabbed the ipad.

I said, "do you want to read a story?" I opened up a story and Sadie and Nana went through it together and listened to all the words and touched all the monkeys in the story. Sadie at first wanted to touch the ipad, but when she wants to touch, she still has a hard time reaching her arms out. Instead, she instinctively brings them in. When we noticed she wanted it, we brought it closer to her and she immediately calmed down. Her whole body relaxed and she reached out and touched it whenever she wanted.

After the story, Sadie and Nana looked at the animals. We have this app that shows a big, bright picture of an animal and says what it is, then if you touch the screen it makes the sound of the animal. It's really neat. They played this for over an hour, while Sadie was attentive and captivated the entire time!! It's so great to see Sadie doing things like this with her grandparents!

My dad even played a little game with Sadie. He pretended he was a lion and he would make his hands do a galloping sound on the couch behind her. They'd get closer and closer until they finally "attacked" in tickling her tummy, which resulted in extreme happiness. He probably did it ten times in a row, and Sadie would start to smile as she heard his hands on the couch, like she knew what was coming...then the tickle attack would make her smile so big!! It's too bad she doesn't giggle, because I think that game would have produced awesome belly laughs that babies give!

It was so good to hang out with family yesterday. I really wish I had pictures.

Sadie's first Surgical Consult

Sadie and I had an appointment yesterday to see a surgeon about placing a G-tube. This would mean surgery to cut a hole in the lining of Sadie's stomach and placing a tube there for her to be fed through. It would replace the tube that is currently in her nose. Our reasons for wanting this so quickly are threefold:

1. Upon getting this tube, the results have been so immediate and so positive that we know continuing to feed her this way (while continuing to slowly learn to eat orally) is the best thing for all of us.

2. We have accidentally ripped the tube out of her nose and off of her face more than twice in the 3 weeks she's had it. Also, she has learned to find it and pull on it, which only makes her mad, but she isn't coordinated enough to figure out how to open her hand and let go!! It's kind of funny, and kind of sad.

3. By using a G-tube, as opposed to the NG tube we have now, we can start to blend real foods and give her those instead of just the Pediasure formula we are limited to now. The reason for this is that the G-tube will be larger in diameter and allow for thicker consistencies to be passed through.

Dr. Notrica was very nice and had a lot of positive things to say about Sadie. After a quick examination of her, he exclaimed that she looked "well taken care of." I chuckled and told him that's like what you say about an old car that you're looking to buy! He laughed and told me that they see a lot of children who come in and are dirty or rashy and you can tell their parents just don't take good care of them. He told me that it is obvious that Sadie is well-loved. He also went on to say that she is very pretty, which I always love hearing.

Dr. Notrica didn't seem to think it was a problem to get Sadie scheduled for surgery before we leave to go to Eugene. But, when we went to the scheduling desk, I was told we have to wait for insurance to give approval before we can schedule. Most of the time I am so thankful for insurance, but they are really teaching me patience!! So, now we wait for the call to say it's been approved, let's get her on the schedule!

Here is a video about the Mic-Key button like Sadie will be getting. The first part of this video is very good and shows exactly how it works. After that, you can stop watching.

I also think this mom does a really good job explaining and showing everything.

Chillout Chair Victory!!

When Sadie was really little, we learned that the only way to calm her was to provide some serious vestibular input, she needed to MOVE! The bouncy chair worked perfectly for this, and we were not afraid to use it all day and take it with us everywhere we went. But then it broke. So, we replaced it. Then that one broke...and so did the next 3 after that. We finally decided that Sadie was too heavy for the bouncy chair, and we sadly had to give it up. That was a scary time for us, we didn't know how else to calm her down. We could bounce her on the yoga ball, but that was a lot of work, and you couldn't do much else while you were bouncing. We were afraid we were in for a lot of screaming, until one day Sadie and I went to PT and there was a chillout chair. It looked comfortable, and I'm always looking for something to sit Sadie in that will fully support her, so we tried it out. Then we learned that it rocks. A couple of weeks later we were bringing it home to try it out for a few weeks until we could get our own. (the one we have is like the picture, except instead of wheels, the bottom is rounded so you can rock rock rock) The problem was that they cost close to $1000. Welcome to the world of Special Needs, where everything cost so darn much because they know that insurance will pay for it!

The problem is that it takes a long time to go through the process of insurance approving it, ordering it, shipping it, etc. So, sometime in the middle of April we started that process. First, our Occupational Therapist had to write a letter to Dr. Wendy explaining why Sadie needed this chair and how she would benefit from it. Then Dr. Wendy had to write a prescription for this chair. Finally, it is submitted to our private insurance as well as Sadie state health plan for long term care. And somewhere in there, a company called Preferred Home Care got involved. They are like a broker between us and the insurance company. The insurance company won't deal with us directly, so they go through Preferred, who then takes care of the ordering and delivering of whatever item it is we're getting. Once all that was taken care of and we properly crossed our t's and dotted our i's, then we waited.

And waited.

And waited some more.

Finally we got a letter stating that the insurance company believed it to be in Sadie's best interest to take an extra two weeks to see if they couldn't find a cheaper alternative that would still meet Sadie's needs. In the letter there was a fax number where we could send additional information pertaining to the case. I was a little upset. I felt like if I could just bring them to my house for an hour, or send a video, they'd understand and be rushing to sign the approval...but that's not the way it works.

Instead, I typed up a letter clearly giving my reasons why Sadie needs this specific chair and no other one will work (we looked already for an alternative that we could purchase and not have to deal with the insurance company!). Then I sent a copy of that letter to Dr. Wendy and Jessice, the OT, and asked them to craft something similar to also send to the insurance company. I also called Jason at Preferred Home Care and explained to him the situation and he called the insurance company to explain further why this chair was required. He encouraged me to build a strong case, one they can't ignore, so I did.

And it worked, because I got the call last Friday from Jason telling me the Chillout Chair had been approved!!

One more victory for Sadie.

Clair Huxtable would struggle too

My life has been a disaster since Sadie was born, as evidenced by the state of Brian and I's bedroom for the last year and a half. Today I cleaned our bedroom and found Christmas presents from my students that were given to me when I went on maternity leave. I'm talking Christmas 2009!! It's like ever since Sadie was born, I haven't been able to catch up; not on my sleep, on my housework, on my hobbies, nothing! I am NOT Clair Huxtable...seriously, how does that woman do it?!

I've been watching episodes of The Cosby Show, and I am half way through season 3. Here's what I've learned about Clair Huxtable:

• she has carried 5 children and still probably weighs barely 100 pounds


• she gets her entire family up and off to school, making them breakfast and lunches, and still manages to leave for work looking beautiful...and on time


• she always laughs at her husband, even when he's clearly being annoying


• she speaks fluent Spanish and Portugese


• she sings beautifully


• her house is spotless


• she has time to garden and cross-stitch and read the paper


• she keeps track of "the books" (meaning, she pays the bills)


• she can get the entire family out the door to a formal function in 30 minutes


• she makes it home most nights to make a 3 course dinner and kiss her children goodnight


• and she never ever ever gets stressed out by all of this

I, on the other hand, am a completely different story. I live in a constant state of stress. My child screams all day, pukes up everything she eats, and won't drink. I yell at my husband for not doing what I want him to do, then I yell at him for asking me questions so that he can know what I want him to do. My toilets have a permanent ring around them from the hard water, and I can't even remember the last time the floor was vacuumed in my bedroom (maybe when I brought those Christmas presents home in 2009!). I can't finish most of the projects I started, and when I set my mind to an exercise plan to lose weight I end up injuring myself half way through it.

So, I want to know, how does Clair Huxtable do it? She is both a TERRIBLE example, since she's not real and everything always works out fine in TV-land, and a great motivator. I now have 2 clean bathrooms and I've rearranged the furniture in the living room so that I could vacuum underneath it. My child still screams all day and all night, but I have a new approach, I just ask myself: "what would Clair do?" And then I realize...she'd probably scream and pull her hair out too!

NG follow up

We saw Dr. Wendy yesterday to follow up on Sadie's NG tube placement. I love that we have such an awesome pediatrician because not ONCE did we see a G.I. doctor in the hospital, and our follow up isn't until July 13...almost 2 months after Sadie's admission (May 22). But our pediatrician, who is super busy and I couldn't schedule an appointment with, squeezed us in at 8:30 in the morning on a Monday.

She was pleased with everything I had to report. And Sadie weighs 20lbs 7oz!!! I told Dr. Wendy that Brian and I had discussed it and we feel like since this tube has been such a positive thing for Sadie that we should start talking about a G-tube. We feel like this is going to take more than a couple of months before Sadie will be able to eat enough to sustain her own growth, and rather than prolong the misery of throwing up her tube and having to re-insert it, or risk the danger of ripping it out everytime we pick her up or move her somewhere, we'd like to just have the surgery to place the G-tube. I am also very interested in getting Sadie nutrition from real foods, and not just pediasure, and to do that she needs the G-tube. Dr. Wendy said she completely agrees and she'll push the referral through right away.

We have a surgical consult scheduled for Friday morning of this week.

I will keep you posted as I have more information.

ipad update - it finally came!

Sadie's ipad came last week. It's been so exciting to play with it. One of the most fun apps we downloaded was the Yes/No app. It's basically a big green square that says "YES" when you touch it, and a big red square that says "NO" when you touch it. But you can change it. So, I made a square that says "MORE FOOD" and recorded my voice saying "more food" and another square that says "ALL DONE" and recorded my voice on that one too. And we practice when she's eating orally. Of course I still decide when she gets more food and when she's all done, but I'm hoping that soon she'll be able to do it herself. I also learned that you can add pictures to the buttons on the screen. So I made one with my picture and my voice saying "mommy" then one with Brian's picture and his voice saying "daddy." We haven't used these yet, but we will soon.

We also downloaded animal noises. She likes this one when she plays with the speech therapist. Ours is a little different, but it's neat because it's also in Spanish. Brian and I are trying to learn/perfect our Spanish, but we also think it'd be neat if Sadie was bilingual. Her favorite so far is the rattle snake (Serpiente de Cascabel) because it makes a really fun noise. She also likes the gatitos (kittens) because that noise is familiar to her. It's pretty fun to watch her sometimes listen, sometimes try to look, and other times she wants to touch.

We have some other apps that we want to work more and more with, one is about shapes, another is fruits. We have another that when you touch, shapes accompanied by noises appear, so it's good instant gratification to reinforce cause and effect and hopefully get her reaching out and touching more. Unfortunately teething has been awful these last few days, so I don't have many pictures or video to show you yet, but there will be plenty to come.

For now, here's a picture of Sadie enjoying a quick podcast of Sesame Street. Enjoy!