1. Izzy finally got over the last mucus invasion. The increased Pulmicort and Xopenex nebulizer treatments combined with diligent suctioning got rid of her Darth Vaderesque breathing and large-alcoholic-smoker cough, both of which attract double takes when coming from a stroller.
2. We payed a visit (literally) to Izzy's gastroenterologist who happily concluded that despite the Bean's cyclical vomiting, her growth and weight gain are optimal. She is 3 feet and 30 pounds, which is rather large for a 2 and a half year old female child and - considering the fact that she is not mobile - provides a significant daily workout for a rather petite female parent. The GI specialist thought it would be best to leave Izzy on the Cyproheptadine but agreed to introduce Q10 co-enzyme into her diet to fight cyclical vomiting.
3. We also had an appointment with the Bean's neurologist, which followed the choreography of our past neurologist consultations and resulted in a higher daily dose of the Vimpat. Izzy's brain once again learned to outsmart the anticonvulsant and her drop seizures, absence seizures and complex partial seizures have worsened. She's been only getting one third of her maximum dose so there is still room for an increase before we declare the drug a 'fail'. Once she fails the Vimpat, she will have been on three different seizure medications and we can discuss VNS (vagus nerve stimulator).
4. Since we've been giving Izzy the increased dose of the Vimpat, she's been displaying the same restless borderline OCD behavior that she did when we initially put her on the drug. She is frantically going after her toys or any object in her close vicinity, and if nothing else is in her hand's reach, she pulls on her own clothes or rings her own hands. Her fists are starting to take on he street-fighter appearance again. I think the Vimpat is messing with her stomach and she can't verbalize or localize the discomfort, so it manifests itself in her manic behavior. Last time it took a week for her body to adjust, hopefully it won't last longer this time around and the side effects will shortly subside.
5. Phil has been on a monstrous project the last couple months (which I can't discuss otherwise the interactive design police will make me disappear forever) and he's been coming home either very late or in the wee hours. As a result, I gained a new appreciation for single parents and the efficacy of house arrest. Izzy was full of snot and not in any shape or form to do therapy or be away from the suction machine, therefore I spent days inside without seeing anybody or talking to anybody other than Izzy. Don't get me wrong, Izzy is a delightful company, but she doesn't talk. We had a blast though, the Bean and I, bonding over mucus, big air bubbles in her tummy, suctioning, nebulizing and listening to conspiracy theories on Coast to Coast.
6. Prompted by the widely successful haircut we gave Izzy, I talked Philip into trimming my hair. Being the reasonable and highly intelligent person that he is, he firmly resisted at first. "Come on, you have a keenly developed aesthetic sense and you are very skillful" - I argued. "No way!" - he replied and he stuck to his guns until I played dirty. "Well, how can I trust that you will take me off of life support in case I end up brain dead if you can't even trim my hair?"- It was my last ammunition. "How can you say such horrible things?"- my mother asked sincerely astonished when I was explaining the mushroom cut on my head the following day on Skype. As if she hadn't spent 44 years being married to my Dad, the uncrowned king of dark humor and inappropriate jokes. Phil, on the other hand, doesn't get surprised when I say foolish things: "If it came to that, I wouldn't have to listen to you telling me afterwards how I did it wrong."- he replied without missing a beat. I don't know if he wanted to teach me a lesson or he was just tired of my pestering but Phil finally gave in and trimmed my hair. He did a fantastic job. The next day I called my stylist and now I have really short hair.
15 comments:
I took a course recently in children's hair-cutting -- it was a misguided attempt to "save money" and cut the boys' hair. Oliver was my guinea pig and it was a bit scary. Hair stylists are under-rated, as far as I'm concerned.
:)
"He did a fantastic job. The next day I called my stylist and now I have really short hair"... You are nasty...and why are you concerned about pulling the plug, being braindead will keep you from getting mad at him... and you have your own stylist? Like some Hollywood celebrity? Must be nice. Laci
Elizabeth - After having to learn how to tube feed, put a mic-key button back, deal with oxygen tanks and suctioning and seizures and all that craziness, one gets a bit overconfident and thinks "oh how hard can it be to cut hair". Well, I will never underestimate the skills of a hair stylist again. I am interested in that hair cutting course though.
Laci- I AM a horrible nasty person. But Phil DID do a good job, I just looked like John Lennon with the mushroom cut and I needed some layers. And, yes, I worry about the brain dead scenario: if I'm not in there anymore, I need him to move on and find a good mom for Izzy. And of course I have my own stylist, she lives in the servants quarter with the butler, the nanny and the maids. My life is exciting and glamorous and it's almost too much fun to be me.
not one day passes by without me wishing to have your glamorous life... I hope we are clear that I'm completely unserious here... I never felt sorry for Phil for a moment... you are the nicest person I know who doesn't just fake it... of which I may be envious. I do get amused by female blackmailing techniques though, I have to admit. Laci
I have been in quarantine with Royce for over a week - we both have a shocking head cold and we're competing on the mucus levels. Everyone is avoiding us like the plague. Chantel's with us but she hasn't come down with it fortunately. I had a great laugh from your post. Nothing like a good dose of dry humor to lift the spirits!
Come on, Laci, of course I know you are not serious :) Except for wishing to have my glamorous life part. That I believe. But I don't blame you, everybody wants to be me :)
Marcelle - Ah taking care of someone else's mucus when yours runneth over is the worst! I just switch to autopilot when it happens. I hope Chantel stays healthy and you recover very very soon!
Take a look again at the article extract I sent you (http://onlinelibrary.wiley.com/doi/10.1111/j.1528-1167.2011.03075.x/abstract) since mono therapy usually doesn't cut it.
Ah ha ha to mushroom cut and conspiracies on Coast to Coast, my most favorite of which is that we are ruled by "reptilians" who reside in the center of the earth. I'm sure Joseph Campbell could have contextualized that perfectly. No doubt my appreciation is indeed heavily influenced by single parenthood, often being up until dawn, and extreme houseboundedness.
i want to see the original cut phil did! i want pictures!
Erika, i love the way you write, you are funny and so fresh! I really had to smile as you explained the mashroom John L. Style!!! Zsuzsa Leimeroth
Actually, one of the reasons I love your blog is because of your humor (the dark sort I more than appreciate, but I do live in a bastion of sarcasm, New Jersey).
My husband would never try to cut my hair, even if I said that to him! I did have a period when I tried to trim my own. It was quite long so the raggediness didn't show (too much).
Eric - I sent you an email.
A - Hahaha! I've never heard the reptilian one, but it sounds like appropriate listening material for the wee hours :)
Jenn - I wrote you a post.
Zsuzsi - Thank you :) You are lovely.
Krisztina - Dark humor keeps us sane. I trimmed my hair before too and the outcome was way worse than Phil could ever do.
Adi is a few months older than Izzy and is the same height and weight. We were worried for a while (not too worried) about her size because my boys were both bigger throughout their lives.
But now that she is 30 lbs and 3 feet and has finally reached the 50th percentile, we are all relieved. But I hear you on the transporting issues. Adi is more mobile than Izzy, but still I have to carry her a lot. Get her in and out of seats. When we go on trips, I have to hold her on the bus while the stroller is folded. NOT FUN! And I'm bigger built, too, so I can only imagine your situation.
Self-taught-hair-cutter of all the males in my family here. I watched a video that came with the scissors and electric buzz. It is a skill that improves with practice.
Hoping to see a report on the success of the seizure med soon.
I hope Izzy's therapists are guiding you through a standing program as standing can be a great assist to caregivers - over lifting.
Not wishing to be you but grateful to know you.
Barbara
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