Friday, July 26, 2013

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 didn't turn out as amazingly as I had hoped, however, but it was a good experiment.

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.

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. 

Saturday, July 20, 2013


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

Friday, July 5, 2013

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.