Ever since I found Clare’s blog about thinking of three beautiful things, I have been inspired to do that each day. Clare is way better at actually sharing those things with the world and hence the popularity of her website. But since so many things have built up from this daily practice I wanted to give all the people who love Ellie an update – a bit over due I know.
She is tired because we upped her dose of Depakane but still very active. It usually takes a week or more for her body to address. We will get her levels tested next Wednesday and if it’s high call her doctor and discuss lowering the dose. We met with Ellie’s neurologist last Wednesday and she was really pleased to see Ellie doing so well. I asked her about getting oxygen in the home in case Ellie had another seizure and she said that would only be necessary if Ellie had a prolonged seizure. I asked what “prolonged” meant and she said one hour with the child turning blue. Honestly, I think I would die first if that ever happened. Ellie certainly was pale but not blue and her 10 minute seizure was the most excruciating 10 minutes I have experienced since her birth. Of course the nagging question in the back of my mind regarding all that is - so you have to wait until someone, my child, is actually having an anoxic event to give oxygen? Something. Does. Not. Compute. Just the same, Ellie has been seizure free since our incident on New Year’s Eve and that is a beautiful thing.
Gross Motor Skills
Ellie is rolling all the time now to get things. She was doing this before the seizures started to mess with her last May and then stopped. But now she is a powerhouse again and we are having to move stuff and take the child proofing to a new level. She is also spending some time in her stander which you can see here. She doesn’t complain though the thing is hard to get her in to and I worry every minute she is in it what it is doing to her spine. I worry so much about that, that I don’t put her in it. Dave does once in awhile and I think that is enough. I have been doing as much tummy time as possible to compensate for the stress on her spine. The great thing is that she is fighting me less on the tummy time – which I have to say she readily does for everyone else. But when it comes to me it’s Mama’s lap only please. I guess I should enjoy that while it lasts ;-)
The Scotson Technique (TST) Therapy: reality check
I thought when we got back from England that I would be doing 3 hours of therapy with Ellie per day. But after really understanding the exercises it will work out to 2 hours per day. This is a relief, especially since she will be starting school. Currently we are on our third week of doing them as we took time off because she had the pneumonia. I am doing them with her one hour a day and on Monday will be ramping up to two hours per day. I wanted to start slow and at first Ellie was a bit pale. I am breaking them up into half hour segments. I am finding innovative ways to be able to do them without needing someone else to spot my wiggle girl who does not prefer to stay still before 8pm. One way is to put a soft pillow over my legs and let her lay over the pillow on her tummy. This way she can’t fall over and I can do the exercises on her. That said, 6 mornings per week, Dave and I get up with her and do exercises for 30 minutes. In truth, I really love our mornings. Ellie is happy because she has Mama’s and Dada’s full attention and we all start our day together connected and focused on helping Ellie’s brain heal. Throw in a little Pete’s Arabian Mocha Java and I can even temporarily negate debt I just paid to the GSTTN – ha!
Nutrition and Diet
We met with Ellie’s GI doc and he was thrilled because she gained 11 kilos in 3 months time. I have detailed her diet and my approach to nutrition here and here and here and here. I have been experimenting with adding a little more variety into her diet. I tried making dark meat turkey soup and could smell the acid on Ellie’s breath right away after a couple of days of this. I tried her on avocado and again she was acidic. When I say acidic, I mean that her voice gets hoarse and I can actually smell acid on her breath – like when you have indigestion. I will try to give her a little avocado from time to time but only in teaspoon portion sizes. There are so many GREAT nutrients in avocado – but it is an incredibly rich food as well, which is hard on Ellie’s system.
The whey protein we bought while at Advance is still proving to be easy for her to digest and I wonder if it is what is behind the increased rolling and energy. I also am giving her two cooked egg yolks 2-3 times per week and that does not seem to be causing her any trouble either. I am too chicken at the moment to try the whites…
I tried her on banana allured by it’s naturally high potassium and other nutrients. Ellie communicated to me before I gave it to her that she did not want it – even in her g-tube. See how she is developing?! I gave it to her anyway, being the horrible, nasty mother I am, and she did not do well digesting it. I really believe the body has an innate intelligence about what is good for it. I know a few people who do muscle testing to tap into this innate intelligence. But how do you do that on a child with hypotonia? And, as any mother knows, it’s hard to get a straight answer out of a 4 year old, especially my Ellie who tries daily to convince me her nanny lives at the North Pole. Sigh. But in this case, it was her body’s innate intelligence telling her, no banana please – too rich. I should have listened.
In my unending quest to get live enzymes into her (she whose sensory issues make her gag on hard foods and who is currently refusing all food by mouth) I am going to try organic grapes. Tomorrow I am going to blend up 3-4 in water and give her those (And yes, I will probably peel them – go-ahead roll your eyes. Mine are rolling as I write this.) She continues to get the fresh carrot; beat; ginger juice cut with a lot of water and that is going down fine- plenty of great enzymes there but a bit of a PITA (pain in the ass) to deal with the juicer every day. (If you juicing fresh vegetables you need to drink the juice right away as enzymes die with each minute that ticks by after the juicing process. This is why I don’t juice up a bunch of veggies and pop them in the fridge and hope for the same benefits for those of you who might have thought of this as a solution.)
Interestingly, the Nanny Goat formula we have been giving her has started to make her sneeze and get a little runny nose every time I give it to her. I think this is a sign of lactose intolerance but I am wondering why it just suddenly came on. Solving this mystery will involve learning something new about the body, which is always good. If anyone has any insights about this – do share them and thanks in advance.
In sum, Ellie’s blood results came back (CBC) showing that she is not vitamin deficient and she is gaining weight and growing at a good pace. I am happy to see her energy levels rising slowly despite the increased seizure med.
Eating by Mouth
She is still refusing to eat for me full stop, though she can and will just a little for her beloved Bonnie. The beautiful thing is that Dr. Soul (how cool a name is that?) when I told her this noted that Ellie was asserting her independence. This was a great realization for me and is exactly what Ellie should be doing at this age. I basically stopped sizing Ellie up against where child development specialists say she “should be” because it just doesn’t apply and got to be a bit painful. I find it more useful to understand her for where she is at and work from there only comparing to where she was. But still, it’s nice every now and then when I discover she is on target or even ahead in some small way. I’m not sure a parent of a typically developing child can truly understand how such a small thing as this revelation delivered to me via Dr. Soul is such a ray of hope and will keep me going for a long while. But there it is, Ellie asserting her independence. Hurray!
School Update: best for last
We heard back from the school (I mentioned here) and that I wrote an essay for and spent hours on the phone with and sent stacks of paperwork to and finally visited…. Drum roll please…..
They ACCEPTED her! For those of you who actually heard screaming 2 Fridays ago round 6ish, yes, that was me after I received this incredible news. We met with them the Tuesday before and it was obvious to us that they totally get it. The teachers and therapists we met were clearly there because they are passionate about the kids. They communicated with Ellie in such a way that gave Ellie time to process and respond – without us telling them what she needed. Ellie even reached out to touch one of the other kids. The school was clean and bright and calm. We were there for 3 hours and left with no concern other than hoping they would accept her. I am measuring my high hopes with a dose of wait and see. She is to start in March and a lot of details have to be worked out with our school district, which is why I was hesitant to report his great news. But now that a little time has passed and all is still a go – time to share our good news. It’s always excellent to have something good happen for someone you love especially when she has been through so much. In fact, it’s a beautiful thing.