From the outside in

I have been thinking about people’s reactions to Ellie and our story and disability for awhile and wondering how to put this but…I am starting to see that in our case anyway, it looks worse than it is from the outside looking in.

I have said that to people and they don't believe me. And I can’t speak for anyone but myself.

But more often then not when people hear our story and all its gory details or look at our situation they sometimes say and I am sure often think, “Thank god I am not them!” Or “That’s horrible!” I know this because I have thought these things when I have been seen other kids with disabilities different or more severe than Ellie's. So I am just as guilty as the next person for doing this. Lately, however, I am learning not to judge things I don't truly know about or have the intimate experience with to really understand.

I can honestly and easily say, I would not wish prematurity or brain damage on my worst enemy. There is nothing glamorous or funny about it for all you fakers out there(so much in that last statement for another post!). This has absolutely been the most difficult thing I have ever had to live through in this life. And if you really knew me, which most of you don’t, you would know that, that is saying allot.

However, I do wish to make a distinction about my life today, our life as a family as it is these days looking from the inside out.

I have had people say off color things to me recently like my PT for instance. I told him how great a Dad Dave was with Ellie and I said, “Ellie’s a lucky girl to have such a great Dad.” And his reply was to scoff. He literally made a tut sort of sound and said, “Well, she doesn’t have that much luck.”

Then the other day while I was doing strength building he was obviously thinking of my situation again and he said, “It’s so ironic that a mother and a daughter would both get club feet but from such different causes.” He said it so lightly, breezily as he was kicking a soccer ball around waiting for me to finish the exercise.

Please note that I like this person. He is an excellent PT, a good person, he seems to care about his patients and is generally kind. He asks about how Ellie is doing every time I see him. He used to work in early intervention. He is not yet a parent but he is of an age and in a certain amount of time in his marriage that he might be thinking about having kids. He also might feel a little overwhelmed when his natural inclination would be to put himself in my shoes. Because he is an empathetic person though at times he says things that are tactless as I have mentioned.

He is a good example of how from the outside people see that Ellie is different. They see me lugging her around, her not walking, her drooling, her head control not being 100%, her wondering eye, her vocalizations, her dystonic movements. They see that she goes to a different school. They don’t see us at the park much or running around on the street (well not yet – wait till next summer when Ellie is up to speed in her Pony walker!). People see the ambulance rushing us off to hospital. They see our house dark at other times during hospital stays. They see us feeding her through a g-tube and giving her medications.

From my perspective I have a totally different view. A dual perspective if you will because I am aware of all I have described above. Mainly, though, I see something else every waking moment of my life with my husband and daughter.

It is the inside view.

I see this beautiful little girl, with skin that is the color of my bolero blush roses, green-eyed and blondie curls who seems to soak up the sun and emanate it from within no matter what the lighting. I see her cheeky grin and find myself striving to make her laugh just to see her smile and hear her giggle which is the cutest thing I have ever heard. I see a person who opens my heart the instant I even think about her.

From the inside I have a daughter who needs me, who challenges me, who I have to make do things she doesn’t want to do like brush her teeth and tummy time.

From the inside I am a mom who worries about her child (just like all good mothers do). From the inside we are a very happy family: Dave, Ellie and I. We enjoy each other’s company so very much. I look forward to when I get to be with both of them. I look forward to when I pick Ellie up at school each day just to get to be around her. I look forward to helping her overcome her challenges and accomplish what she will - like any mother. I can imagine life without her. I have been forced to do that when she was on the edge. When I do that I honestly can’t imagine how I could go on without her.

So, I am not making lemonade out of lemons or anything stupid like that. To say that is to dimish my life and overlook the enormity of this experience, the wonder that is my life. I am also not in denial. If you read my blog you have heard me be quite honest about lack of sleep and having to make so many phone calls and fight so many battles.

I AM fully immersed in my life which, with all it’s challenges, is pretty good and particularly so for Ellie’s presence in it.

So from the outside you might see what appears different or even lacking. But that is all an illusion. Yes we are different. But no, there is nothing lacking here.

Our normal is perfect in my eyes.

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Picture descriptions from top down:

1. Last Sunday, Ellie at a fairy party laying on a big stuffed dog in a fairy tent stretching her wings.

2.Ellie and Mama at the same event reading a book in the fairy tent. Thanks to Haley for a rare pic of me and Ellie!

Ellie is growing up

This is a picture of Ellie in a corner-sitter at school.

No straps.

No hands holding her round the middle.

Just her.

Sitting.

Only supported by the chair itself.

Looking very grown up.

In the past 5 months she has gained 6 pounds, 2.5 centimeters in head circumference, 2 inches in length, and vocalizations that are starting to consistently sound like words. She is recognizing that signs take place not only at the chin but on the head, face, chest and arms. She is doing her best to sign back - all the time. She started school as if she had never left it - never missing a beat. Thrilled to be there every minute. She is working with an eight year old student to help her learn to use a qwerty letter board which is pre-voice output training and she is pacing with this kid wonderfully.

Awhile back when Ellie was really sick and not making any of those pesky milestones I was completely freaked out thinking that she might be in the baby phase - forever. It was a really scary time. Then she started to smile and express herself ever so slightly. Then she gave me her first nuzzle which is an Ellie hug. Then she started to make sounds and let us know what she needed. Today she is so purposeful and funny and smart. She makes me laugh all the time.

Yesterday morning upon waking she wanted me to do the 5 Little Ducklings Song - which I did. As soon as it was done she turned her head and pointed - yes pointed with her index finger extended (ok - only a parent of a cp kid will get how wonderful that is - but trust me - use of the index finger is critical) toward the door and said Ou! Indicating to us -that is was time - TIME PEOPLE! to start the day. Now.

My little girl has moxy. My little tiny preemie baby is no longer. She's a little girl. Who sits and points and has a mind of her own. It's funny. I never thought I would, but a part of me misses little baby Ellie. I guess that is the thing about being a mother. You take joy in your child at every age at the very same time as you know that with all their glorious changes they are moving away forever into their own independent world.

Edit: I just found out from Ellie's teacher that there is actually one strap around Ellie's waste because the seat is so shallow. But that is still so great if you consider that normally she wears full on shoulder straps as well. Her trunk support has just gotten so much better.

Should Doctor’s give Patient’s Notice?

This has been a rough week in many ways.

We are pretty sure Ellie’s identity has been stolen, which is just a huge stinking hassle to fix and one more thing we have to track closely for the rest of eternity.

Oh, yeah, did I mention she hasn’t slept through the night since mid-July?

Mid July!

Yes – up every night for 90 minutes to 2 hours. I am a little on the stressed out side by this. However, this is not yet another post about those bastards – the Goods of Sleep Through the Night – who clearly hate me.

No.

This is about a continuity crisis I am having with Ellie’s medical team.

Ellie’s Neurologist, whom we adore, who is excellent in every way from bedside manner to expertise especially since she specializes in hypoxic-ischemic brain injury and PVL, dumped Ellie as a patient on Wednesday.

We had our usual good visit: me with my list of questions, her with her thoughtful answers. She looked Ellie over after she was weighed and had her height and head circumference measured (44.3 cm’s there – the most growth she has had in ages and not due to hydrocephalus). And then she asked me if I had any more questions. I said no, that about does it.

Then she said, I have something I want to talk to you about.

Ok, I said.

I can’t be Ellie’s doctor anymore.

Oh no! Why?

Well, my clinic specializes in newborns up to age three and they have been cracking down on me. I would have done it before but didn’t because of the seizures (they surfaced May of 2006).

So the conversation went. She gave me the name of another doctor, sort of new to the hospital. I thanked her very much for being so great and told her I would miss her. I kept getting the vision in my head of our very first visit with her when we had just moved here and Ellie was a tiny little 13 pound 11 month old. She took Ellie right out of my arms and carried and weighed her, herself.

She said to send her a Christmas card. I said I would. She gave Ellie a little velvet flower with a smiley face and attempted to get Ellie’s attention to say good-bye to her but Ellie wouldn’t look at her. I wondered if she knew or was just tired of sitting and wanted to get to school. She went to shake my hand but I gave her a hug, which she returned and thanked her again trying not to lose it.

And we left.

I was in total shock. It was just like a break up. I started wondering what I had done wrong. Was I a pain in the ass parent to deal with? Why Ellie? Was she dumping all her other aged over three-ers too? What had I done wrong? Am I am horrible person? Will anyone love me? (just kidding about those last two)

She had every right to do it. I probably knew when she first took Ellie on that she could only see her until she was three. I also forgot that completely. She’s a great doctor and I am so thankful for all she did for us. I felt really safe with her on the team. I found out later from Ellie's pediatrician that she had just received some gazillion dollar grant to do more neonatal research so she has to free up her time. That was helpful in answering the, is this personal question. Which it wasn't (and it hardly ever is - that's just where I go - luckily somewhat lightly these days - most of the time anyway - but that is fodder for another post).

The scary part is that I called the doctor she recommended to take over Ellie’s care, but he can’t see her until January 2008. So my kid, with the three shunts, seizures, PVL, and cerebral palsy doesn’t have a neurologist on board for 4 plus months?

No way.

I have been freaking out about this since Wednesday. I spent all of Thursday and Friday calling doctors offices, writing them emails and faxing them letters to ask if they could see Ellie in less than 4 months time. I got some other recommendations from Ellie’s pediatrician but they can’t see Ellie for almost a year – all three of them!

Geez! I am sorry to report that the brain injury - CP business is booming in Boston.

It did dawn on me today that Ellie’s pediatrician, who still works with Ellie’s neuro…, er, I mean former neurologist or Ex – neurologist, can hopefully follow up on the scripts I was supposed to walk out with from that last visit where it was decided to change Ellie’s seizure medication dosages, but totally forgot, being completely flabbergasted and in a daze. I did call Ex-neuro’s office about those but totally felt like a stalker even though I explained that I was just following up on what was decided in that last visit. I haven’t received a call back… So I will have to call again, feeling even more un-entitled and pesky.

Which totally sucks.

Ellie not having a neurologist on her medical team is like trying to sail a ship without a rudder: scary and unfathomable.

Maybe Doctors, if they are dumping patients with a chronic condition, should give them notice – like say until they are able to line up another doctor to cover them?

What do you think?

Ellie at Drumlin Farm

Ellie really enjoyed her short visit there this weekend.

Picture descriptions from top left to right:

She thought the little chicks were really cute.

The next two pics are her discussing them with Dada.

She laughed at the fancy chickens after a long stare at their bizarre head plumage. She enjoyed reading the signs and discussing what they said about the animals.

Stem Cell Therapy: to do it or not to do it?

It seems like people get on either side of this issue and stay there - like it's black and white. From my perspective, as a mother of a person who potentially has much to gain from stem cell therapy and an intelligent person, I can tell you there is nothing self evident about it. It's not a no-brainer to do it or not to do it. I have been criticized for not raising funds to take Ellie to China and get the treatment straight away. And on the other hand I was told I was nuts to even be considering it in any time under 30 years.

I was asked by Katy to provide some information on stem cell therapy and that is what has prompted this post. I wish it were the magic bullet any parent of a disabled child is looking for. Some surefire way to take away the disability, pain and uncertainty. I am pretty sure though that there are no such magic bullets in life but rather only experiences that deserve paying attention to in order to learn and become better than we are.

That said, we have been standing in the wings waiting for a significant breakthrough on the stem cell front where Ellie is concerned. It strikes us that within Ellie's lifetime current techniques will be further refined such that the improvements will be far greater than the 25% that seems to be a common number in the blogs of those undergoing the treatment.

The big question is how long it will take for medicine to get to this point? Our biggest concern is that the long term affects are not really known. It's comforting to see that a US study shows that the umbilical cells appear to be safe and have no known side effects ... but at the same time our instincts say wait a little longer and track some of the existing patients and see how they get on.

Here in the US, it seems as though the public mood is behind stem cells/against the current administration and many states have big research budgets & programs underway so I'm hopeful we will start to see some breakthroughs in the next few years. The problem is, stem cell treatments will likely be highly regulated by the FDA and it will take even longer for the treatments to hit the mainstream in the US than in other countries.

We spoke with Radar in Malibu CA/Bahamas and also Dr. Steenblock who does the umbilical transplants in Mexico. We came away with the same impression that they were both somewhat fly by night operations and didn't fully trust them. Also neither seemed to publicly track patients post-op as chinastemcells seem to be doing. China seems to be quite far ahead and they are using umbilical cord cells.

Below are a list of blogs that we have been following.
http://stemcellchina.com
http://stemcell.taragana.net/ this blog is great for tracking stem cell news reports
http://www.stemcellschina.com/blogs/Kendra/
http://blog.brookebarels.com/
http://www.stemcellschina.com/blogs/Gabor%20cp/
http://kimpoor.blogspot.com/
http://www.stemcellschina.com/blogs/Maya/
http://lukasnguyen.blogspot.com/

Dave found this clinic in Germany. They are not using cord blood but adult stem cells from bone marrow. XCell Center - Regenerative Medicine
http://www.xcell-center.de/index.php?id=&L=1

Beike Bio-tech and stem cell processing at
http://www.beikebiotech.com/index.php?option=com_frontpage&Itemid=1

So what do you think? Is it safe? Does the benefit, at this point outweigh the risk?

Any research studies or blogs or websites that any of you lovely readers out there would like to share on this topic will be greatly appreciated.

A New Way to See

Finally, after much go around and come back again, I procured Ellie's first pair of glasses this weekend. They are purple and have stars on the edges and have a case shaped like a little plastic purple handbag with the word "princess" written on it in cursive little diamontes.

I put them on her and she scrunched up her nose. I am sure -that sensation of glasses on your nose for the first time ever is a bit strange. She kept scrunching her nose and the thing tickling it wouldn't come off.

At this point, as you can see here, she almost started to cry. But Dave and I, wanting to avoid this, piped up and said, "Ellie, you look so beautiful! These will help you see better!"

She thought about this for a minute and then, in classic warrior princess style, decided they weren't so bad.

Isn't that what it's like when you encounter something new and different? Even if that something is a fix to a problem or a disability. Once you understand that life is still life, that you are still loved and beautiful. It's not so bad. It's just a new way to see.

All About Ellie

Picture description: Dave and Ellie making the most of the bad weather we encountered on our brief vacation.

It's been busy.

Now that I am off the crutches and possess an internal clock set to the school year cycles I have been making up for lost time. As a result, getting loads done but not blogging. So this post goes out to Lisa and all of you who are missing my warrior princess. Apologies to all when I said I would post a picture of her every day. Once again Dooce shows me how it's harder than it looks.

It's been all doctors appointments and therapy and paperwork getting Ellie into school. So today, just pictures with short descriptions. More thorough update this week. Thanks to everyone for your input on alternative therapies - especially the anonymous reader who actually gave me a contact name and number after much travail to get it. I will be calling them this week.

Picture description: The giving tree - probably over 250 years old in Old Saybrook, CT

Picture description: We got to the beach a good few times this year. Ellie LOVES the waves and her tent as does every other little 4 year old around. Very cute.

Picture description: Dave and Ellie apple picking

Picture description:
Ellie greeting Mary Ann, her PT, on the first day of her first full year of school. Very exciting! And she did very well.