6/17/10 – Leg Update, Speech, Test

So Renny is now out of her cast (yes!) and back into her full leg brace, which she will be in for 5 weeks total, so beginning/middle of July. Though not as fun as being without the brace, it is SOOOO much better than being in that big cast. She can actually SIT now, on the floor, in her bed, on the couch, in her carseat. I didn’t realize what a blessing it is to be able to sit! She gave us a scare last week, when I went to check on her before I went to bed (I do that every night), and she was OUT of most of her brace. I had pinned the part by her fracture down, knowing she has gotten out of her brace in the past, but I obviously was not thinking about WHO my daughter is. She has been called Houdini for a reason. She gets out of braces, carseat straps, MRI straps,….I should have known. So, I began freaking out about what she may have done to her not-totally-healed fracture, and emailed many friends asking them to pray for her leg to be okay. I couldn’t sleep that night, prayed all night, because I did not want her to have damaged her leg. The next morning, her leg looked okay, and it has looked okay since – no swelling, hotness, or fever – all usual signs of a fracture, since she usually can not feel the pain to let us know it hurts. SO, thanking the Lord for that! (I have since pinned each part of her brace (the velcro parts) and she hasn’t gotten it off!)

So, now Renny is being as active as she can, as usual. I don’t think the doctors realize exactly HOW active she is. She does NOT like to sit still. She is always on the go – still – walking and/or swinging back and forth on her parallel bars, scooting around, wanting to be everywhere we are and wanting to do everything her brothers do. Today I was playing catch with the boys (teaching them how to catch with a baseball glove), and she yelled and yelled to join in, and in the end I had to give her a glove too and I played “catch” with her for awhile as well.

She is doing a little better with her speech. Relatively speaking. I have been working some with her on making different sounds. She can say most sounds in our language, but cannot put many of them together. For instance, she can say the sound /u/ and/p/, but she cannot put them together to make the word “up.” However, she can say words that are a consonant followed by a vowel, like “ma”, “da” (which she is now saying for T, instead of calling him “ma” like she always used to!), “baa”, “moo”, and, her newest one, “boo”, which she will yell when playing peek-a-boo. She is also doing a lot more imitating of signs, so if I teach her a sign for something, she will copy it right away, something she didn’t seem too interested in before.

In a past post, I mentioned that Renny has a diagnosis of polymicrogyria, which means “many tiny folds” in the brain, and had been a theorized reason for her delay in speech. Since then, I have discovered there are several different types of polymicrogyria, but I am unsure of Ren’s type. It is a fairly recently discovered disorder, and so I could not find a lot of information. But, there is a book called “Schuyler’s Monster,” by Robert Rummel-Hudson, written about his daughter, who has a type of polymicrogyria called bilateral perisylvian polymicrogyria. I have not read the book yet, though I would like to – though I’d like to find out what type Ren has first – but the author has several videos on YouTube, and I wanted to show one in particular, where his daughter is reading, to show how much the condition has affected her speech.

As with spina bifida, not all children with polymicrogyria are affected the same way – Each child has a unique situation – So this does not mean Renny will have the exact same difficulties with language as Schuyler, BUT it does show an example of how her polymicrogyria could affect her. I am hoping with early intervention and lots of working with her, and lots of praying (hint, hint!) that she will be able to work through it all and get her brain to figure out how to put those sounds together into words.

One last topic I wanted to mention is that Ren has a urodynamics study/test next Monday in a bigger hospital. This will probably determine if we will need to start catheterizing her. It will take a closer look at her bladder, which appeared to be having too much pressure in the previous test. I have been giving her pumpkin seed oil since then, because I read it can help with the bladder system, including bladder pressure. I know it is/was a long shot, but I knew it couldn’t hurt. Please pray that her bladder looks better, that she will not need catheterizing. As I said in the past, I know it will not be the end of the world if that is the result, but, still….

I soon hope to look into getting a hand cycle (tricycle she can pedal with her hands), and she should be getting her wheelchair soon, both of which will make it easier for her to be more independently mobile. I will update on those as they come…

Again, please pray for her leg to heal completely and correctly, and for our stretching of her leg to help loosen her very stiff leg, so that she can be ready to be totally out of her brace in a month. Also pray for the speech area of her brain, that her brain will be able to figure everything out, despite the challenges. And please pray for good results of her test on Monday.

Thank you for all of those who have been and continue to be such great supporters and prayer warriors for Ren and our family!!
Ren at the Zoo



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