So much life – so little to say

Catching a few zzzz on my Christmas present from Santa

I feel badly that I have not updated this in so long. Yet how do you update a blog to say the same things over and over again? How do you write things that make you feel so utterly broken inside?

The “good” news, Rebecca’s tumor only grew a very small amount. This means we are waiting until March to scan again. We know the tumor will have to come out at some point. We originally thought the tumor was 5mm. This was based on our first phone call with Dr. Grant. However since he didn’t have the film in front of him, with the actual measurements, it was sort of a rough measurement. To him, it was just “tiny”.
In December we were comparing that scan to the old one. So we had them to measure side by side. The tumor was about 8mm when it was found. It was about 9mm in December. So about 1mm growth. This was considered good news, it means it is slow growing and not aggressive. Becca did not have to have surgery during the holidays. yeah – that is all old news. Now we just wait for March. Dr. Grant did say that it will have to come out eventually.

On the same token we continue to see an increase in seizures. I was able to get Becca into Neurology last week. It wasn’t with her regular Neurologist, but it was someone in the department at least. We’ve increased some of her meds. We’ve also changed her rescue med. (For those who understand this gunk – we increased her Onfi, and changed her from Diastat to Clonazepam). I found that because of how she gets into “trouble” with seizure activity, Diastat was just too hard to give. She doesn’t usually have true status seizures. It is more like she has what I call a “clusterfuck” – she will have back-to-back (to back) seizure events. Often a vicious cycle of complex partials and clusters of head drops, and back and forth. Since she is still conscious through all of this, giving her a tiny pill that will dissolve in her mouth will be much easier than trying to give her a medication that is administered rectally.

We are also still seeing quite a bit of fatigue. Poor girl is just so sleepy. Now before all of my good-natured friends and family jump to the conclusion that it is her shunt, we do know when she is awake, she is her normal hyper self. She also displays no other signs of shunt failure. Yet we continue to see her take 3 hour plus naps on the weekend, or any other time she is given half a chance. This all greatly affects her school performance.

The good news is Rebecca continues to show how smart she is, even though it is causing me many more gray hairs. Rebecca loves to test her boundaries. There are a few things that are off limits. Reaching over the gate into the kitchen is one of them (whether she is reaching for the trash can, or something on the kitchen counter.) She usually gets a couple warnings “Rebecca, No”, “Rebecca stop touching the trash can” etc. She KNOWS. She will turn and see who is watching. These days she takes it a step further. Because she knows I will give her a smack on the butt for misbehaving (after having been warned to stop, more than once) she will now either sit down, or put her hand over her butt as soon as she sees me move towards her to punish her. So she not only knows she is doing wrongly, she knows the consequence! What a stinker!
And no – time out would not work, this is a child with limited mobility. limiting her to her chair would not be punishment. Rewards have no meaning, so that would never work. Re-direct works for about, ohh 2 seconds.

So that is our life in a nutshell.

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Her brain is bored?!

I know my title sounds utterly crazy. Beyond crazy. BUT stop and think for a second. Her little brain has had so much seizure activity for 6 1/2 years now. She was having an average of 4.5 events a day. If you counted her head drops as individual seizures instead of singular events that number shoots up to 50-100 seizures a day. Yes, you read that right. Those head drops have anywhere from a dozen or so seizures to upwards of 50. Thanks to this new medication they are GONE. Her other seizures are doing better as well. This means that her brain is no longer in the electrical firestorm of seizures all day long. Now that this has happened her brain is having to re-organize. Remember this is a child who has had seizures almost her entire life. Her brain doesn’t really know what it is like to not have this firestorm. Therefore we’ve been dealing with a firestorm of a different kind as a result.
Remember that manic laughing I mentioned in the last update? Things have gotten a bit more difficult. For one thing we can not keep her from chewing on her left hand (she will chew on her right hand, but not so much). This is more than sucking on her fingers – she is shoving her whole fist in her mouth at times. She has ended up getting little sores in that webbing space between the fingers. I went out and bought a kiddie rubber gardening glove to cover her hand. We had to have something to keep the area clean and dry so it can heal. We’ve TRIED behavior modification. She laughs when you tell her “No hand” or “stop”. When you take her hand out of her mouth, she waits a few moments and puts it right back in. Smack her hand? Ehh she lets out a noise of displeasure and goes right back to chewing. She HAS chewies. She is simply preferring the sensation she gets from her fingers right now. I don’t know why.
Then there is what I call the Becca body meld. She doesn’t just try to snuggle. She tries to physically become meld with you. Like she can’t get close enough. She has a highly annoying habit of reaching her left arm around your neck so incredibly tight. So imagine the child laying chest to chest with you. Her knees pulled up. She takes her left arm and wraps it around your neck so tightly that her little 6-year-old arm wraps ALL THE WAY AROUND and she can then shove it in her mouth. CHOKE! And heaven forbid you try to stop her as she is doing this. She is incredibly strong. And many times in her attempt to get her arm around you she is clawing you. So yeah, when I say my child is beating the crap out of me, this is what I mean. She will literally try to climb up me when I am walking into the other room.
I was so glad to drop her off at school yesterday. But much to my chagrin the report from her teacher was she was in a great mood and her behavior was great all day. Ohh gee thanks kid. Beat up on mommy and daddy all weekend and be nice to your teachers? I really feel the love!
BUT – we did start her on a new medication to help with these behaviors, that according to the neuro are OCD and “Autistic-like” (No one thinks Becca is autistic though). We’ve not been on it a week yet, so it’s too soon to tell. So far I think I am seeing some decrease in these behaviors.

Her PT appointment I mentioned last update went fine. We decided to go with getting her “real” high tops (not converse cloth ones). There would not be much difference between these and SMOs (supra-malleo orthosis – otherwise known as orthotics that are only ankle high). The shoes should give her that same support and input. If we don’t find that these help we will order her SMO’s. The PT doesn’t want to go with full AFO’s. For my non medical friends – the full ones would come nearly up to her knee. The thought is those would limit her mobility more. She is getting more used to her new shoes. Plain high tops, but of course they are heavy and cumbersome. I mean come on – how many of us can easily walk if someone slapped on a pair of hiking boots. It’s not much different for her little feet.

Well I think that is our update for now. Eye Doctor tomorrow.

Pray for us that her behaviors normalize. Pray that our miracle with Onfi continues. And of course lift up all of our other Epilepsy friends, those doing good now, and those who are having a hard time. It is a long hard battle.

Continued Blessings

I wish we had tried this medication (onfi) years ago. Maybe it was not meant to be our miracle then, but it certainly appears to be so now. We continue to see fewer seizures. Like other successful treatments we are also seeing that many of the seizures she does have are shorter. Which means the events I do see are often REALLY short. It means I may be deluding myself in how few seizures she is having, simply because some of them are so short that I don’t see them, or can’t determine them to be seizures. Alas if I can not determine it to be a seizure I can not record it as such (and that is nothing new!)
This medication has one odd side effect. Well not odd per-say. It is making her hyper. She has these manic giggle fits. These are NOT gelastic seizures for any of my curious Epi friends (she has had those). Nope, this is plain and simple hyper mania brought on my medications. The medication that the Onfi is replacing was very sedating. We never really thought it sedated Becca so much until we took it away. The same can be said about the Keppra. We never saw Keppra rage, until we took Keppra away and she was calmer. Oh well. It is still to be determined if the Onfi is causing some ataxia (gait problems). We have our PT appointment tomorrow morning to see if Becca might benefit from AFOs.
Yesterday Becca had her dentist appointment. Technically it was considered surgery. We went to Wake Med – where her dentist does procedures (their office is on that side of Raleigh). Becca was put under General Anesthesia and had a full set of x-rays, a full cleaning and had sealants put on her 6 year old molars. She has had a cleaning but it was not as thorough as this one, since she doesn’t cooperate well. The other two things could not have been done without putting her to sleep. The dentist determined that her two lateral incisors were a bit loose, so she went ahead and extracted those. So Becca is back to being the toothless wonder. I’m glad the dentist took care of that. I knew she was due for more loose teeth, and I have hated this stress.
Her babbling continues. Some days more than others. Our biggest hurdle right now is her near constant chewing on her hand. The left fist is almost always in her mouth. No matter what David and I do, she puts it right back in her mouth. She thinks it is a game. She starts laughing when we scold her about her hand in her mouth. Her personality of being born a sixteen year old continues.
I guess that is about all I have to update for now. Things are going well. We are riding this high while it lasts. Loving every second.

I just can’t get over this

Becca has only been on the new medication – Onfi – since January 15. Less than a month. In that month she has done amazing. Her seizures have been fewer. She has been chatting so much. Her attempts at communication are continuous. She is so vocal. It makes me beyond happy. Only now and then do we (Daddy and I) hear utterances that sound like real words. Sometimes it sounds appropriate for the situation. For instance last night she was chatting away and David repeated back sounds like she made, He said something to her along the lines of “I don’t really know what you said”. David and BOTH heard her say “why not?” I couldn’t help but laugh. Other times we may hear “Daddy” and then a series of babbles we don’t understand. So clearly she is trying to tell Daddy something. So cute!
I got out her iPad and turned on one of the talking animal apps (for the record it was Lenord – a big blue furry monster). Becca started making her growly noises. She got such a kick out of it repeating her sounds. She would make more noises. Each time it repeated them she became more delighted. I had to restrain myself from shaking with laughter at her delight! She got more and more excited. I loved the level of cognition that I saw with this app.
I’m also seeing improvements with her daily progress reports sent home from school. (I don’t have a copy of one in front of me, so its hard to give many examples). But one continual problem Becca has is always picking the object on the right side. As near as I can tell, she is starting to do better, or at least crossing mid-line to choose the right – which means – using her LEFT hand. WOOT!

We’re still not sure why she has had some issues with her gait. She seems to have, what was best described by another parent as spaghetti legs. Especially her right leg. I took her for an orthopedic appointment this past week and Dr. Fitch cleared her. He does want her to see a PT for an AFO consult. Thinking they could possibly give her more stability. With that in mind we will see her old PT later this month. Lisa Mangino (aka Gino) is the one who saw Becca back when she was younger, but has since discharged her from PT. We LOVE Gino!

Keep up the prayers for Becca, they are working. God is doing amazing things in her life right now. (having to end this blog update – some little girl has fallen asleep in such a way that typing using both hands is nearly impossible)