Puréeing

This is a plate that contains a cheeseburger, minus the bun, with ketchup and cheese, and sweet potato fries with ranch dressing. This is how I have started preparing Lucy's meals for her and it has made a huge difference in how well she can eat. She was having a lot of trouble chewing and swallowing and was just not eating much at times. I know sometimes toddlers are picky and don't eat well, but typical toddlers will not generally become underweight, or quit being able to eat on their own, which is what can easily happen with girls with Rett Syndrome. They can either start aspirating on their food and drink, or their mouths can just not cooperate when it comes to eating correctly. These problems will often lead to a feeding tube if they become too severe. Lucy has already not gained any weight since before Christmas and actually lost a few pounds, so we need to do everything we can to ensure she is at least maintaining her weight and she is continuing to be able to eat. So, enter puréeing her meals. She has started eating so much better. 

The usual motto applies to this situation as with anything else we have to do differently, "It doesn't matter how I feel about it, it only matters that Lucy needs it."  With that being said, I nearly broke down in the grocery store yesterday as I was looking at baby food pouches and trying to figure out what we can use as on-the-go snacks. We already have used the applesauce pouches for a long time, but she has even been choking on the crackers that never made her choke, so we need more options. I mean, I felt nauseous, and like I was just going to start screaming and bawling right there in Wegman's. I feel the same way as I blend up every meal and as I feed her every bite. I feel that way even more because she is gleefully eating each bite, which of course means non-puréed food was too hard for her to chew, which means a regression in her mouth's motor skills. 

This reaction could probably seem odd or confusing to some. I have sat her down in a wheelchair for the first time and barely batted an eye. I began strapping her leg braces on a year ago with only a feeling of relief. I learned to use her PODD with only excitement and anticipation in my heart. To color or paint, or try to feed herself, I snugly Velcro a cuff to her hand and don't make a fuss about it. I could go on and on. I don't know if I have talked about our traumatic nursing experiences, I probably have, but to explain my rage I feel it's necessary to repeat the woeful tale:

In a nutshell, Lu couldn't nurse. She couldn't latch on which makes perfect sense now, but at the time it was a mystery to the nurses and lactation consultants. They called her "lazy" and took all of her clothes off and put cold cloths on her to keep her awake to try and make her nurse. She had jaundice and was weak from that and from lack of calories, in addition to the fact that she had low muscle tone and no one knew it yet. So she cried, I cried, and we tried and tried for five days to make it work. Not one nurse suggested we just give her a bottle of formula, even though she needed to poop to get the bilirubin out so the jaundice would go away. And then, a nurse said something in will never, ever forget: "She will probably need to see the pediatrician a few days after you go home to make sure she is thriving." What I heard was, "If you don't get it together, your baby is just going to waste away." Like, she was just going to disappear! Irrational, yes. New mother hormones making me crazy and emotional...umm yes. The night we finally went home from the hospital, after hours of unsuccessful attempts to nurse, we gave Lu a bottle of formula. She gulped it down and instantly fell asleep on my shoulder. I had quit crying and so had she. In the following days I tried to pump several times without success because I instantly tensed up. Although I was relieved that Lucy was getting calories and she did poop out the bilirubin, I cried and cried and agonized over my utter failure at nourishing my baby successfully in the way nature intended me to.  The WIC office with their millions of posters chastising mothers who don't nurse did not help either.  

Anyway, I have been crazy about what and how much Lu eats and drinks ever since then. I believe I am scarred for life and unfortunately, not being able to eat or gain weight is one of the main concerns that can arise with Rett Syndrome. So, I think that's why it is extra hard for me.  But...so far this week Lu has eaten a sizable salad, a turkey sandwich, half a cheeseburger and fries from her Happy Meal, Brussels sprouts, and more all puréed. It's a good thing and she is fine with it. Meals are quicker, she's eating more, it's safer for her, and with puréeing things she has even more options of what she can eat.  I also bouht a small mini chopper that is powered by pulling a cord to take to restaurants with us so Lu can continue to enjoy dining out. It's just going to take a little time for me to not be filled with rage and anxiety about it. 

Lu's art wall

I am in the midst of accepting something. It started a few days ago and I guess has been brought on by these new problems Lucy is having and by her decreasing hand functioning. I think I struggle endlessly to try and make Lucy's life and world as "typical" as it can be for a child with her disabilities. I long for her to be able to sit with her toys and talk to herself and pretend and play and build things. Not only do I long for it, but I worry incessantly that the lack of it will affect her negatively in some way. I don't see any negative effects as of yet, but I really agonize over it, and this isn't the first time I have lamented it here and everywhere else. But...the key is to not force what I wish was reality, and miss out on things she could be doing.  They might not be what a "typical" 3 year old does each day, but I guess my only concern is keeping Lu stimulated, active, and engaged with the world around her. 

We have a book of wild flowers native to PA and we walk along our woodsy driveway and play a little matching game to find the flowers that we see.  So far we have identified St. John's Wort, Crown Vetch, Daisy Fleabane, Ox-Eye Daisy, and Sundrops.  And, while Lu was in her stander one day this week, we made sweet potato muffins to freeze for snacks. I also look and look for art projects that are open-ended so there is no particular goal for the end project, but ones that I can modify for Lu. 

This was a project where we used a little hammer to pound leaves and flowers between watercolor paper and paper towels...it didn't turn out as amazingly as I had hoped, however, but it was a good experiment.

http://www.classic-play.com/art-school-spring-leaf-painting/

One day we were reading some books about cows that Lu had requested from the library. However, the pictures were mostly of giant dairy and beef farms where the cows did not especially get to enjoy the "cowness". Lu did a finger painting to create a more natural cow habitat and we added a few cows that she chose, to the pasture. 

Here is a nature shadow box we made the other day. It is still drying as there is a large amount of glue in the box. We went for a walk with mom the other day and Lu napped most of the time so I gathered supplies and then with her yes and no she chose what to put in it, and then was able to drop each item in the box! This was quite a feat considering how stubbornly ineffective her hands have been recently. http://www.teachpreschool.org/2011/11/our-nature-shadow-boxes-in-preschool/

And here is a special spot we created to display Lu's beautiful artwork!

So, we don't do the things I thought we would do, but we do our best to keep things interesting, stimulating, 

and and as age-appropriate as possible. The last part can be difficult as Lu is cognitively three, but her motor skills are 

are similar to that of an infant. I think we are doing okay and I think she is happy and engaged and likes the things 

we do.  I imagine that as I do the things that work for us, I will still occasionally think about how I thought it would 

be, but I realized this week that maybe I will think about it less and less as time goes on. 

Changes

So, A LOT has happened since we moved to the new house on June 21st. Instead of making this a novel, I am going to list the main events that have taken place:

1.) Lucy started having trouble breathing. She is sometimes holding her breath and then taking big, fast breaths, almost like hyperventilation. This is from Rett Syndrome. Girls develop irregular breathing patterns. Dr. Sasha in New York wanted her to do a breathing study, but our insurance would not approve it. We are waiting for her to decide what to do from here.

2.) Lu starting having staring episodes again. We did an outpatient EEG that did not show seizure activity within those 45 minutes. Dr. Sasha also wanted us to do an extended EEG after the breathing study, but since the breathing study wasn't even approved, we aren't sure when or if we might be able to get this done.

3.) Lu has started to not be able to sit up on her own a lot of the time without support. She has been able to sit on her own since she was about 7 months old, and now she is losing her balance and just falling over. She has never been able to get herself into sitting, so she is stuck there until we help her up.  We bought her a bean bag chair that is shaped like an armchair because she just couldn't stop falling over and she seems to love it!

4.) There has been a significant increase in the degree of apraxia that is affecting Lu, which has resulted in a significant decrease in things like how much she uses her PODD, how she plays with toys, and how she uses her hands in general. Just weeks ago Lucy was able to pick up toys, look at them, put them in her mouth, and now she seldom picks anything up. She was constantly putting her Chewlery (her chewing necklace) in her mouth and chewing on it, and now it just hangs around her neck and even if we put it in her mouth for her it just falls out. And, she has barely used her PODD.  We keep modeling and asking her if she has something to say, and she most often says no, whereas a month ago she always said yes. Last night after supper, she did have something to say and it was the longest complete thought she has managed to get out in several weeks and she said, "It's, frustrating, can't, let's do something else, communication device". I realize that probably almost sounds made up because it is so spot on and maybe not how you might expect a three year old to express herself, but she knows how to use her PODD and she uses the words available to her. Linda, the PODD trainer, said that when the apraxia is too much at times, the girls might just not be as chatty as they usually are and will just say what is most important to them. So, as we suspected, she hasn't been using it because it is just too hard and too tiring to get her head to make the yes and no movements. Almost as soon as she got that sentence out, she fell asleep. 

5.) I just mailed in letters to appeal the second denial of Lu's Tobii and also for a complaint I am filing with Gateway because I don't believe they contacted the correct doctor for a peer review before deciding to deny us again, so I have been getting that all together. 

6.) One day, early in June as I prepared supper, I got a phone call from the genetics counselor at Geisinger who said the test results finally came back on whether or not I am a carryier for Rett Syndrome: I'm not. I did not feel relieved, oddly. I cried. I think I cried because I felt like maybe if I was a carrier then that would at least be an explanation for why this horrible thing happened to Lu, but as it turns out, there is no explanation. There's a 1-2% chance that every woman's pregnancy will experience a RANDOM GENETIC MUTATION, and we were in that mind-blowingly tiny percentage...awesome.  And then, as we ate supper, I got an email from my doctor with some bloodwork results I had done because I wasn't feeling well at times and I found out my insulin is "very high" and my blood sugar was high. I did some more tests and fasted for them and my blood sugar was normal that time, and my cholesterol was normal, but my insulin is still a concern. Your insulin level should be between 3 and 17 and mine was 76.6. I have started eating way better, taking a medicine called Metformin, and losing weight. This should hopefully prevent diabetes. 

7.) And, Lucy has gone to her first two days of summer preschool! She likes it, smiles the whole time, and things are going very well there. Her therapists are wonderful and are really doing everything they can to figure out how Lucy can be most successful and incorporated  into everything that is going on as easily and smoothly as possible. I have been there the whole time with her as they still haven't found a personal care aide for her and even after they do find one I will stay until I feel confident that they are going to take good care of her. I think it will be great for Lu to go to a little bit of school.

So, things around her have been stressful and kind of heartbreaking and frustrating. I don't know what is happening to Lu and its agonizing, but we will hopefully get it all sorted out and get back on track.

New chair

First day of summer preschool

Being a mother

Several weeks ago Chad and I were watching the show NOVA on PBS and I have thought about that episode a zillion times since. It was talking about how similar apes and humans are, but then also showing the significant aspects that the apes lack that have stopped them from being just like humans. As they kept saying on the show, they were highlighting some fundamental behaviors that apes are missing which prevent the world from turning into the "planet of the apes". The similarities are eerie that is for sure. However, what I found the most intriguing, and haunting, was the footage they showed of a mother chimpanzee mourning her dead child. The mother literally carried her child's body around until it was nearly completely decomposed. She slung it over her back as she would do if it were alive, and she hugged it, and held it, and looked at it lovingly, as if to say, "Why are you dead? Why?" 

What has run through my mind about that footage is how similar the emotions seem to be between humans and apes. I truly believe that if it weren't for the fact that we would be instantly shackled and sent to a sanitarium for life, human mothers would react in the exact same way if they had a child that died. I believe that to be true because I feel certain that I would need to be sedated and have Lucy pried out of my arms if she ever passed away. I feel this certainty based on how I feel about her each and every day.  Some days are more heartbreaking than others, but regardless, every day brings at least a tiny bit of heartbreak for what Lu has lost, what she is missing in life, and what I want for her, but can't give her because it is out of my control. I feel so...fierce? Passionate? Primal? I'm not sure that there is really a word that describes how I feel about Lu's well-being better than the video of that momma chimp carrying her dead baby. Maybe what I am saying is that I don't always feel the civilized "human" feelings that are socially acceptable when it comes to Lu. I kind of feel like a wild animal that will do anything to see that she is safe, healthy, happy, and whole. 

What I also believe is that the majority of human mothers feel the same way. The sisterhood of motherhood, I think, is a strong bond that our society's civilized rules have watered down to the point that mothers are more casual with each other. Mothers can be judgemental, stand-offish, and unfriendly even, in spite of the fact that each of us would be likely to attack an intruder in our homes to protect our children, or lift a car to save them...or claw someone's eyes out if they threatened to hurt our precious babies.  I believe that just below the surface, most mothers are ready to pounce at the mere notion that someone might hurt their young, just like animals in the wild.

 I felt so incredibly sad watching that ape carry her baby because I think I can just imagine, just a little bit, what she might be feeling as she lovingly totes it around, trying to change its fate. But, she can't fight death, like she could fight a lion. I can't fight Rett Syndrome like I could fight an intruder.  They are not tangible foes, we can't beat them, we can only try to accept them and live with their consequences.  Acceptance might be the civilized response, however, and as I have stated, I don't think that "civilized" is a mother's gut-reaction, so we just keep fighting, and clawing, and carrying on. 

What Lu's been up to

I am having troubled unclenching my brain enough to write an actual post, so I am just going to share some highlights of the past few weeks. My tense brain is due to the new house, but we are actually, truly moving this weekend! Like, we are really going to finally get to live there!

"The library is the temple of learning, and learning has liberated more people than all the wars in history." -Carl T. Rowan

We go to the library pretty much every week because I believe that knowledge will set Lucy free!

Lu has been working hard when she can to practice in her walker.

Those are cornflakes in a bag taped to her stander's tray and she helped crush them for the top of cheesy hash brown casserole for a picnic. That same day she helped her Daddy pick all of her toys up and said about helping  to do things, "I think it's, cool!" 

And finally, Lucy and I went on a little shopping trip where she chose what to buy with her birthday money, and then handed the money to the cashier from her own little purse. She chose a little doll, a small stuffed Murray (from Sesame Street) and a ballerina puzzle! It was great fun and she was so tickled with herself! 

The letter

I'd like to share the actual denial letter that Gateway sent us so everyone can read exactly why they denied Lucy this time. It is absolutely preposterous! And, AND in the letter they name the wrong doctor as having done the prescription. They say her OLD pediatrician requested it, and by old I mean she is no longer her doctor. But, neither pediatrician wrote the prescription, it was Dr. Sasha! So, my assumption is that Dr. Sasha never knew she was supposed to talk to anyone because they called the wrong office. 

Dr. Sasha is still planning on talking to someone at Gateway and hopefully she can make a difference. If not we will have to appeal it. If they deny the appeal, I don't know where to go from there other than to raise the money ourselves. Something I think I have failed to mention, however, is that the total cost for the de vice and everything that comes with it is almost $20,000! Hopefully we don't have to go that route.

The person who denied it must surely not understand that the PODD only works with another person sitting directly in front of Lucy turning the pages of her book. The Tobii would help Lucy to become an independent communicator.  The plan will never to be to have a Tobii INSTEAD of a PODD. She will always have both as they both have benefits and drawbacks. The Tobii could die, malfunction, or any other technical problem could occur and then she would still always have her PODD. But, with the Tobii she could be out of my sight and say, "Hey Mom, I need you!" "Help, I am stuck!" Whatever! She needs it, end of story. Everybody has the right to communicate independently. 

The right to speak

We were denied for the Tobii when we submitted our first request back in January. We then spent several months doing a Tobii trial, and also trialling a Dynavox Eye Max which is a similar machine, but inferior. In the denial letter it stated that there was not sufficient evidence that Lu could use such a sophisticated device. We recently submitted an addendum to our original request that included a detailed assessment showing Lucy's ability to use the Tobii which was done by Dr. Sasha's speech therapist. In addition to that, our speech therapist included a detailed report on how well Lucy used the Tobii in the three weeks that we borrowed one. That is all in addition to the first report by Danielle and another report by Dr. Sasha's first speech therapist also stating Lucy's ability to use the machine. 

But, on Tuesday I was told by the Tobii funding lady who has been helping us, that Gateway, Lucy's medical assistance insurance, was going to deny it again.  Gateway told the Tobii lady that they had called Dr. Sasha's office and said they needed to speak to her by 4:00pm on Tuesday to do a "peer review" and if they didn't talk to her they were planning on denying it.  Dr. Sasha did not get any such message and knew nothing about it. She said that sometimes insurances will do that to get out of paying for things. She is seeing what she can do about it today. She has already told us that she will call as high up as she needs to and explain why it is so important that Lucy be able to tell us things immediately and independently. 

But why on earth should she have to! It is not rocket science why it might be important for a person to be able to independently communicate their needs. Does every person not have the right to "speak"?Yes, Lucy does a bang-up job communicating with her PODD, but that requires a partner to be sitting right there in front of her turning the pages and interpreting her signals. With the Tobii, Lu simply looks at it and finds what she wants to say. Not only that, but her PODD can be put into the Tobii, so she can continue with the language she is familiar with. We have shown that she can use it 10 ways to Tuesday, and they still want to deny her. 

It literally makes me sick that some stranger somewhere is just sitting around in their office deciding that Lucy is not worthy of the right to speak. Like, not everyone has the right I guess. I find that decision to be so incredibly offensive I am just about beside myself. I have woken up the past two mornings tense and anxious just wanting to know something. On top of that, Lu hasn't had a BM since Monday morning for no evident reason other than Rett Syndrome literally hates her guts this week. I have not given her too much cheese, I have given her all of her poop medicine, plus green smoothies full of spinach all week, and a prune and apple smoothie this morning and she still hasn't gone. 

Dear Medical Director of Gateway Health Plan,

My daughter can't use her hands, walk, or even take a poop sometimes, ON TOP OF NOT BEING ABLE TO TALK!!!!!!! Could she just have a freaking Tobii eye gaze machine? Could one thing in her life just be simple for her? Could it? 

Sincerely,

Her loving mother

Here is a link to see what all of the fuss is about and a picture of the coveted machine:

http://www.tobii.com/en/assistive-technology/north-america/products/hardware/tobii-i-series/