Tuesday, July 31, 2007
So why the much elevated protein levels in her cerebral spinal fluid? This is the scary answer from her Neurologist - she may have constant irritation from all of her shunts - three in all in her brain. Implications - no one knows. Effect on her - pain. Effect on me - scared shitless.
This is, like some of the CP moms have said, one case of poor baby. Ellie has been really shaky all day. It must be not only fatigue because she has been sleeping allot between meals but from the narcotics leaving her system. I checked her eyes tonight and they were dilating fine at least.
The upshot for me is a massive migraine and chest pains because I can't sleep worrying that she will be in her room, alone seizing. I might just start sleeping in there on her therapy table or beside her in the bed. It's better than crutching in there at ever single slight noise which was about 10 times last night - hence my migraine.
I wish I had more answers about how to help heal and soothe her irritated brain. I am her mother. It's my job to keep her pain free and happy. So what can I do to soothe the pain from thin bits of plastic in her brain? What a bizzarro, twilight zone type of question that is for any mom to have to ask themselves, is it not? Bizarre but truly asked.
I am seriously wondering about things like acupressure, reiki, cranial sacral, hyperbaric - which we know has helped lots of kids reduce seizures, and any other alternative therapy that might help Ellie. Because medicine doesn't have any help for this except to up her seizure medication dose, which I gladly did after this last one, or give her a new shunt, which she doesn't at the moment need, thank all the angels in heaven.
Any thoughts on alternative treatments that might help Ellie's irritated brain heal will be totally appreciated (though I have to say I don't think the whole stem cell thing is safe enough yet to try). Also, any thoughts on how she can safely cleanse the toxins left over by the narcotics they had to give her for this last seizure which included one dose of valium, and three doses of Adivan (not sure how to spell that) and a huge does of Fossfentinal? She is shaking and her head control is worse than it was. She is playing and responding to things as she did before. She is still reading and herself congnitively just very shaky and a bit pale physically.
Can I just hold her forever and never let go - would that work - would that be enough?
Monday, July 30, 2007
Thanks to everyone for all their good will, thoughts and prayers. It all helps and now we are home.
Also, Happy Birthday to Dave the best husband and the best father for her children a girl could ever want!
Saturday, July 28, 2007
Last night Ellie was up from 3 to 4:30am. Dave was with her. First trying to calm her then he fed her and played with her. I heard the whole thing but was trying to sleep because I knew that he would be tired in the morning and I thought at least one of us should try for some coherence. I couldn't sleep though until I heard them both laughing and "reading the box" which is another story.
But my gut kept telling me to go in. It was a tug of war gut versus brain.
At 6:42am, I awoke to Dave's voice on the monitor saying, "Bebe, come in here somethings wrong with Ellie."
I quickly crutch in there and there she is in full on seizure very much like the last one. She is laying on her back, arms straight down her sides and legs straight out. Her eyes are deviating painfully to the right this time and just bobbing there. I turn her on her side and reach for the Diastat kit on her bedside table and give it to her. It's 6:46am at this point. Dave went to call 911 while I gave her the Diastat. He is back pulling out the oxygen and we get the cannula on her. The medics, cops and fire crew are all at our house on our tiny street by 7:51am. I recognize them. They all know about us as they have been here 3 times in the last 6 months.
The seizure is still going on. For the first time the Diastat seems to have no effect. I am calling to Ellie to come back. Telling her "mama's here, sweet pea." "come on back to mama".
The medic decides to give her some Adivan. He does and nothing changes. She is still seizing.
They get her into the ambulance as I quickly change into street clothes. We head toward the nearest hospital. They give her two more doses of Adivan in the ambulance and nothing seems to change. We get to the hospital and she is in a quiet emergency room as it is only 7:30am at this point though time seems like it is in slow motion. Why is she still seizing?
Her eye stops deviating and come to the middle a few minutes after we get there. But Ellie is neither sleeping nor awake. Just lying there. They decide the seizure has stopped but I know this is not yet the postictal stage.
So they decide to give her a loading dose of Fossfentinal in order to allow her to make it to Boston Children's hospital without seizing again. They do and she is knocked out of it. We get in another ambulance and the Children's transport team takes us in. The new medic looks in Ellie's eyes and they are not dilating. In fact the right one gets larger than it already is - and it's huge. The left stays huge with no change when they shine a light in it to check (which by the way is a great thing to do if you think your kid is seizing - if they are their eyes won't dilate properly to light). This is bad.
We get to Children's and they wheel Ellie straight into the CT scanner. Things are moving in that fast slow motion way where seconds feel like minutes because so much is packed into each moment. Finally we are in a room in the Boston Children's ER and the doctors start to come. They did bloods at the other hospital and her Depakote dose is in the middle of the therapeutic range. Her white blood cell count is not elevated. But she now has a fever. She does have an ear infection in her left ear.
They decide to do a lumbar puncture to make sure her cerebral spinal fluid is OK. We agree as her eyes are still not dilating. The CT results have come back and her ventricles are looking smaller than before so we will be able to avoid shunt revision brain surgery that would be needed if she had increased inter cranial pressure. Ellie is being a very brave girl.
They use Emla cream to numb the skin and then put in a shot of Lidocane. That shot really hurts Ellie and I silently question it's effectiveness. There is a guy named Wally holding Ellie on her side in the fetal position to make sure the vertebrae between which the doctor is going to thread the needle stays open. Ellie wiggles though, very strongly then goes limp and keeps doing this. Wally has to be very strong. The Lidocane is in and she proceeds with the lumbar puncture, I am holding my breath and Ellie's hand. Dave is there telling Ellie she is a brave girl and that she is doing well.
This procedure takes 10 minutes with the needle in Ellie's spine while her CSF drips maddeningly slow into 4 different vials, 4 cc's in all. Then it's over, band aid on her back and Ellie checks out and thumb in mouth goes straight to sleep. The results come back and hour later and one doctor tells us that the white blood cell count is low but the protein levels are somewhat elevated. Whoever taught this doc comes from the "cushion the blow" school of thought because when we finally talk to the Neurologist he tells us her protein level in her CSF is 268. Normal protein in the CSF is 40. So the words "slightly elevated" don't come to mind. "Freaking through the damn roof" would have probably been a more accurate description. They decide that though her white blood cell count does not confirm it, they want to treat her as if she has meningitis - viral or bacterial. The scary part here is that if she does have meningitis she will have to have all her shunts removed and replaced. Removing some of her shunts could easily cause her more brain damage.
They also decide to up her seizure meds and give her a loading dose which knocks her out even more. Then they give her two huge doses of antibiotics. I feel like my little family is in some sort of pharmaceutical hell. But what can we say? She does have a fever, she had a seizure that lasted almost one hour and her CSF protein levels are through the roof.
It's 10:13pm as I write this. I just got home from the hospital. Dave will take this shift tonight. I will take tomorrow night because he has a training to attend on Monday morning. I am happy to say that for a couple of hours before I left Ellie finally started to pull out of it. She wanted her videos, and for me to sing the 5 little duckling song, and she started chewing her thumb and making her hungry sound. When we were finally allowed to feed her she kept all her cereal down then went promptly to sleep again.
Please keep her in your heart tonight and wish her a speedy recovery. She needs some angels tonight to guide her through this storm.
I will keep you posted.
Thursday, July 26, 2007
You are my I love you
by Maryann K. Cusimano
Philomel Books, 2001
I am your parent;
you are my child.
I am your quiet place;
you are my wild.
I am your calm face;
you are my giggle.
I am your wait;
you are my wiggle.
I am your carriage ride;
you are my king.
I am your push;
you are my swing.
I am your audience;
you are my clown.
I am your London Bridge;
you are my falling down.
I am your carrot sticks;
you are my licorice.
I am your dandelion;
you are my first wish.
I am your water wings;
you are my deep.
I am your open arms;
you are my running leap.
I am your way home;
you are my new path.
I am your dry towel;
you are my wet bath.
I am your dinner;
you are my chocolate cake.
I am your bedtime;
you are my wide awake. (ain't that the truth)
I am your finish line;
you are my race.
I am your praying hands;
you are my saying grace.
I am your favorite book;
you are my new lines.
I am your night-light;
you are my starshine.
I am your lullaby;
you are my peekaboo.
I am your goodnight kiss;
you are my I love you.
Is that not the sweetest thing? Just had to share this. It's one of those things you only get to encounter when you have a little kid.
Wednesday, July 25, 2007
There is nothing more to dread. I have never dreaded 50 or 60 and have in fact looked forward to 70 and 80. Why? Because I have known, including my grandparents, some very engaging, hip 70 year olds. I have seen Dave’s 80-year-old grandmother travel to Australia with a friend - you know for a little adventure. They have all taught me that once you give up worrying about life and get on with living it, it’s a lot more fun. And, that getting older age wise does not mean you have to be old. It’s all in one’s head. Which is where I have been these past weeks and am glad to be leaving.
Speaking of fun, yesterday was I think the best birthday I have had in a long, long time. It’s the first one where I didn’t care about gifts but was just delighted to have contact with friends and family. Dave spent the day with me and it was great to be alone with him which is a rare gift. I got some unexpected flowers from Dave and Bonnie – thank you both! And I got several phone messages containing various renditions of “Happy Birthday to You”. All of which made me laugh and warmed my heart.
A twenty-something even hit me on when I was leaving a shop while waiting for Dave. It was one of those, “I still got a little something” moments.
My favorite birthday email was from my friend Rick who has been very instrumental in keeping me humble over the years. He strives every year to be the first to wish me a Happy Birthday and accordingly this email was sent just after midnight. I can’t share the whole message but the subject line was: “Happy 40th birthday old woman”. So you get the picture.
Thanks to all and back to the usual programming since I have just completed the last Harry Potter novel – which was so very excellent!
Monday, July 23, 2007
I have always been very connected to my body. I have always been able to make it do what I wanted. For me my legs are my wings. I fly on them. I am superwoman with legs. I can jump tall buildings in a single bound while balancing baby and marriage and work. But now I only have one that is working well and because of that my hands are not free either. I feel hobbled. I am temporarily grounded. It’s been six weeks now – that's a long time.
I feel old.
Sometimes it seems like life is all about suffering broken up now and then by bits of joy solely designed to recharge you for more suffering. I have always been on the joy side looking for silver linings while at times dipping deep into the suffering. Looking for silver linings is a matter of survival like breathing. I learned that skill from an early age. It got me this far. But somehow seems harder to achieve lately. I feel bad about feeling this way. I feel like I am at a point in life where I need to focus only on others. It seems like any time for grief is a waste of spirit. It’s like my life, as I knew it has died. Its time has passed and now my focus is on getting Ellie’s brain healed. A task in the face of which, I am so intensely overwhelmed.
I gave up coffee too, in fact all caffeine in order to ensure maximal healing of my knee. My knee has to heal perfectly. It has to be able to lift the extremely fast growing girl now 30 pounds, someday 40 someday 50 and so on. I have to be strong! But I am no more a coffee achiever. I have to feel my fatigue and deal with it in the moment instead of borrowing energy from those wonderful little beans at the expense of my body. It’s hard living in real time but I am glad I am.
I haven’t felt like posting much for these reasons. I am feeling shallow, hollow, frustrated at my incapacity and infinitely ashamed at being so narcissistic and disconnected from all I hold dear.
I am missing Ellie. Missing being her everything. Missing being able to be alone with her and do our thing. We are lucky to have had nursing help because I can’t pick her up. So when Dave is at work I need help with her. For that I am truly grateful. But I miss her just the same. I miss our life and it’s hard having people in our house all the time even though we are truly blessed to have wonderful nurses to care for Ellie when I am out of commission. But in terms of this chapter in my life, it all feels very feeble.
Tomorrow I turn 40. If you know anything about my birthday superstition you might think I would be seriously worried. The good is that Dave is taking the day off to hang with me. We will also see my doctor and find out if he will let me drive and give me a light at the end of the crutches tunnel. Wish me luck and good thoughts for a better year. Because if you haven't noticed yet, 2007 has pretty much been one big kick in the ass, so far...
In honor of my first year of blogging under my belt, delurk! (or not).
I think most of my favorite posts were all the ones from last summer. If you are wondering how to get to know any blog, go to the very first posts and see how it all began.
(See you all as soon as I finish the Deathly Hallows which as proved to be rather GRIPPING right from page one!)
Wednesday, July 18, 2007
Image descriptions from top then left to right:
Monday, July 16, 2007
I was tagged by one of my favorite Bloggers, Retired Waif, to tell 8 random thing about me. Here you go:
1. I love trees.
2. I have logged over 100 hours as a private pilot – some of those hours learning to fly a Citabria (small, tail dragger acrobatic plane) somewhat like this one thanks to my now long lost friend George. I flew to NY once and my route led down the Hudson River and I did turns around a point using the statue of liberty as my point. All before 9/11. This was one of the best times of my life. I LOVE flying. I got to fly a glider once and that was amazing.
3. I have been proposed to 5 times and engaged 3 times. Three times a charm!
4. Every time I fly to England I weep because it feels like I am coming home. I don’t live there so it’s actually really embarrassing so much so that sometimes I pretend I am weeping because of the book I am reading. Humiliating really.
5. "Ryn" as in Ryn Tales comes from the last three letters of my first name, KathryRYN. And no one calls me that in life. (I hear a couple of Ohs! out there... ;-)
6. Within a month on either side of my 28th birthday I sold or gave away the bulk of my possessions, sold most of my paintings, parachuted from 5,000 feet on my birthday – July 24th - and drove from western Massachusetts on the East Coast of the US to California (on the west coast) landing there one month later with $250 dollars in my pocket to start my new life.
7. The biggest, best, soul expanding transformation I have lived through has been the birth of my daughter.
Friday, July 13, 2007
" Disability Blog Carnival #18,
The Disabled! We’re just like YOU!!!!
So, that said, this edition of the Disability Blog Carnival is designed to explain the the untutored able-bodied type that there’s nothing abnormal about us… we’re just like them! Please do accept my tongue-in-cheek parody and sweeping generalization in the spirit it’s meant, and don’t allow my irreverence to detract from some of the awesome, wonderful writing to be found ..."
I can't tell you, Retired Waif, how much I LOVE this topic! Great Carnival. Thanks for putting this together, especially, while in false labor! I hope all is well and that you have a baby, not only in your Victorian cart, but in your arms as well, safe and sound.
If you have not already been following Retired Waif's blog you are in for a treat. She is one of the most introspective, thoughtful, witty writers out there who always makes me think and see things in a new way. I truly love her blog. Enjoy!
Thursday, July 12, 2007
We went to Nataskit beach which was not crowded and accessible albeits crumbling cement, storm crushed ramps. Crutches and stroller made it to the sand alike. Beautiful, hard packed, lovely fine, soft sand. Ellie enjoyed feeling the sand on her feet and we played where are Ellie's feet a lot. She would reach down and grab a handful of sand on her feet and get excited and throw it everywhere! It was GREAT. And I was impressed that she just reached down to touch a thing she had not seen for a couple of years - sand. The water in the tidal pools abandoned by the outgoing surge was warm as a bath and placid as one too. She reached down to pull up handfuls of wet sand. I wish we could of just sat her in it to play. We couldn't however because we were really concerned about getting sand in her g-tube. I did wrap plastic wrap around her belly but I could see sand getting underneath it. The last thing you want going into her tummy is sand. Next time I think I will cover her entire tube and dressing with duoderm and make a tiny slit over the feeding port and then cover that with duoderm again so that I can access it to feed her. (see the things we deal with that no parent in their right mind would ever consider!)
If anyone has a kid with a g-tube can help in this matter I would dearly love to hear what you do to keep the sand out.
At the beach, ever a learning opportunity, we discussed the Atlantic Ocean and who lived there including shrimp, crab, lobster, whale and fish. Ellie saw waves and reached down to touch them. She even got a little sun on her face for the first time - the slightest of pink blushes which I think is already turning a golden brown. She definitely inherited her fathers' great skin!
We finished up the experience by taking a look at the horses of the carousel. Ellie was not bothered by the music which was also not too loud (more evidence of the good work they are doing with her at New School). Though we didn't ride them this time (because I don't want to do too much too soon considering her sensory integration issues) she was happy to go up to the horses and pet their bejeweled and painted necks. I think she really liked them. We will go for a ride eventually, baby steps but certainly in the near future considering Ellie's smile at petting the horse and the fact that she was nonplussed by the environment. I can't wait. I love carousels and haven't been on one in years!
I am happy too to have found a local beach that is so pretty and so accessible. No more sitting around sweltering in summer's cauldron! Thanks Linda for a GREAT day!
Tuesday, July 10, 2007
Friday, July 06, 2007
Steve and Connie have done and amazing job at organizing it. Just wonderful. You can find it here.
Thursday, July 05, 2007
Often the media in it's mad amoral quest for ratings and sensationalism gets the story all wrong. Below is my experience with Channel 5 who are asking questions about educational funding for disabilities. Had they done their research versus just skipping stones they could have easily gone to our government's educational budget site and found that Disability funding which includes education for kids like Ellie is in a totally separate universe than education funding. They also would have found out that Ellie's town that sends her to an all special needs school gets reimbursed about 90% of the cost and then some. So it is even possible that they are spending less to send Ellie to school than the typical kids to the typical school down the road that we tried so hard to make work for Ellie.
Crappy reporting like this that is ill researched and biased to begin with only does more harm than good. So there you have your average Joe watching Channel 5's report and thinking those damn handicappers, what do they really need school for anyway and to think my kid has to wear the same football uniform two years in a row because all the money is taken up by special needs.....gRRRRRR . Channel 5 - get some scruples! And if you are going to be asking questions about all of this - ask the right ones.
Here is the original post:
Today the Channel 5 news team, who are doing a piece on special education and the main streaming trend, interviewed me.
I did the interview because Ellie’s school asked me and if there is one place I want to give back to it’s her school. I thought their story was going to be about discussing the need for special education and the issues around mainstreaming kids like Ellie. What it turned out to be about was money. I don’t know why this surprised me, because, you know, money is what makes the world go round, etc. But it did put me off a bit because I thought the reporter and the producer were not asking the right questions.
Instead of asking: (For the record - I am paraphrasing these questions and in some cases the implied question and the underlying issue).
Do you think we should be spending so much money on special education when teachers are getting fired and sports programs are being cut?
I think we need to be asking:
Why is it that so much of the Federal budget goes to war versus supporting our schools and the future of our country through properly educating our children?
Instead of asking:
How do you feel about the fact that money is being taken away from “our best and our brightest” to fund special education?
I think we need to be asking:
How do you feel about the fact that the state and federal governments have been continuously cutting back on school funding for the last 20 years? And how do you feel about the fact that you don't even rudimentally understand how the budget works and that funding for special needs is not coming out of the federal or state educational budget! So sending Ellie to school is not taking any oney away from educational spending at the town or state level.
Instead of asking:
Are the disabled really worth educating?
We should be asking:
Why as a country do we allow for such poor, misguided, biased journalism? We should also be asking why, as a country, are we choosing to elect officials and allow for public policy that allows for the continuation of a broken public education system? Why are we, as a people, not calling for serious education reform?
I hate zero sum questions. Discussing whether we can take money from special education and use it for the football team instead is the wrong conversation to be having. Asking me whether I think Ellie is less worthy of an education than “our best and our brightest” is DEFINITELY the WRONG question to be asking.
This type of poverty of consciousness is the symptom of a particular type of fatigue that is prevalent in our society today. It’s the, well we can’t change anything at the higher levels of government, especially with Bush in office - fatigue. So let’s just assume there is a limited amount of pie and bicker over it - fatigue. It’s the our government isn’t listening at the higher levels and our domestic spending is incredibly screwed up - fatigue. It's the, there's not enough money to educate our best and our brightest so let's blow the lid off the seedy underbelly of special education - fatigue. (please tell me - what seedy underbelly?)
It’s all just so NOT what we need to be discussing. We need to be asking ourselves why do we elect officials and allow for legislation that has put our country’s educational system into a state of disrepair and poverty?
For the record, I think all children, able bodied, disabled, rich, poor, all ethnicitys, etc. – ALL - have the right to a free, high quality public education. I also understand that when I say, “free” as a taxpayer that means I am the one who will be paying my share. And I am fine with that. I was fine with that for the 20 years I worked that I paid into the system and had no children just like I am fine paying social security tax even though I am sure I will never receive any benefit from it personally. I am happy knowing that someone’s grandma is able to get health care because of my contributions. That is my social responsibility as a member of my society and I am happy for it. I don’t live in a vacuum after all.
Social responsibility that is followed by social action is what needs to be discussed when it comes to asking funding questions for our schools.
Lastly, the reporter did not realize it, but Ellie is one of the best and brightest. Too bad she couldn't see that.
The piece is coming out in October. I will let you know.