An Amazing 11 years

A couple of weeks ago (June 6th) Angela turned 11 years old. It's been a scary, eventful, amazing, life-changing, glorious 11 years. I made a little video to remember them by.

Make photo slide shows at www.OneTrueMedia.com

Wow! It's been awhile since I updated

So what do we know? NOTHING!!!!

The Neurosurgeon at Mayo thinks there are two possibilities. 1) she's having some type of seizure activity that we just didn't catch on her 24 hour EEG. This would make sense considering when we notice problems with speech and motor skills she's also very irritable and tired. BUT...these can last from 15 minutes to a couple of weeks, which is NOT typical of seizure activity. Or 2) that she has a generalized right-brain dysfunction. This would also make sense given the duration of the events. The problem with this posibility is we'll probably never know the why/where/how/ of it, because, in the words of the neurosurgeon, "We know a lot about the brain, but we don't know it all yet. There are lots of things we still don't understand."

Angela is supposed to be going in for a 3 day in-patient EEG at the end of the month, but I think I'm going to have to reschedule it. Shouldn't be too much of a problem.

Angela was approved for Make A Wish! Yep, all the paperwork went through, and the wish grantors assigned to her are coming to the house on the 27th to talk to her about her wish. Her answers vary depending upon the moment that you ask. If we ask "What do you wish for?" She might say, "to be an astronaut!" or "Go to Hawaii!" or "Go fishing with Uncle Jeff!" or "A cherry ice cream cone!" or, "Give Zach and Cody a hug!" (these are characters on a TV show she watches.)

The Zach and Cody theme has been around a long time. They are from the show "The Suite Life of Zach and Cody" on the Disney Channel. On the show, the twins live in an upscale hotel and get into all kinds of trouble as most tweenagers do. Last year when Angela and I went to Atlanta for the national DS conference, as we walked into the hotel she got all excited and could barely contain herself. "Yes!!!! Zach and Cody are HERE!!!!" It took a lot of convincining for her to understand that Zach and Cody were not going to appear around any corner in the hotel. Actually, I don't know that she was every convinced.

Over the past year Zach and Cody have been an intregal part of her pretend play. They party here every afternoon, they eat dinner with us, ride with us in the car. When we go shopping I have to say, "Now Zach and Cody...I'm sorry but you can't come into Target with us, because there are no invisible people allowed in the store. You'll have to wait in the car, ok?" I then remind Angela that talking to invisible people in public places probably isn't the best idea, but that I'm sure they'll wait patiently for her in the car while we get our things done. She then spends our time shopping talking to herself, "Zach and Cody are in the car. Yep....waiting for me. Yep....Zach and Cody....be patient...wait patient." (I wonder if she's telling THEM be patient, or herself?)

So last week when the Make a Wish person called me, she asked if I had any idea what Angela might like to do for her wish. I told her that meeting Zach and Cody would be a pretty safe bet! Oh, and by the way, they film at Disneyland in CA. Looks like that's probably where we'll be going if she gets a travel wish granted.

Waiting...

Well, I never heard from the neurosurgeon over the weekend. I tried really really hard to be patient, but by Sunday my patience had run thin. As much as I tried to tell myself "no news is good news" I just couldn't hold out any longer. So I called the neurosurgeon on call, who pulled up Angela's chart and read me the notes from Friday's angiogram. It said, "No evidence of vascularopathy, and no evidence of Moyamoya."

That means that Angela does NOT have any vascular disease, nor does she has MMD! That was music to my ears. What we still don't know is why she's having right-brain disfunction, and if she'll continue to have it. I have lots of questions for the neurosurgeon, but until I hear from him I'm in the dark!

Things that make you go "hmmm"

Ok, very first words out of the NS's mouth were, "I don't think she has Moyamoya, and I don't think she needs surgery...yet."

He doesn't think her MRI is remarkable for MMD, (is sharing information with Stanford and Boston though) but her MRI isn't completely normal either. There is NO evidence of stroke at this point. The vessels he sees on MRI appear stong and healthy. HOWEVER, within the circle of Willis (the main vasular system in the brain) she is missing one vessel on the right side. BUT, the same vessel on the left side has crossed over to the right and seems to be doing what it's supposed to be doing, just over there instead.

He has no explanation for the 3-4 weeks that we saw dramatic right-brain decline (and I brought along letters from the ST about their observations as well.) And said that....sometimes....there can be right-brain malfunction for absolutly no reason at all that we can see on any scan. That sometimes it's just too deep for anyone to actually find. And that it will likely happen again.

That said, we're still doing the angiogram tomorrow. He said if we were looking at MMD, the SPECT scan wouldn't be that important, but since we're now looking at something different, he'd really like to have that done. It can show us brain function problems that won't show up on an MRI. But THAT test was cancelled for tomorrow because they can't do them at the same time/on the same day. We'll probably schedule it a couple weeks out.

We ended up coming home tonight. They decided they didn't need to admit her, and I needed to let Ronald McDonald house know by 4:00. By the time I knew what we were doing it was 4:30. The hotels in the area who have RMH rates were already booked. So, it was pay regular rates of $45/night, or spend the same in gas driving home, then to the clinic and back AGAIN tomorrow morning. I was all ready to get a room because I was wiped but Angela announced, "Moooooooooom! No Pool????" and I realized that was going to be an issue. So we just came home.

We have to be back there at 6:30 tomorrow morning, which means get up at 4:30. Lovely.

She also had to see the pediatrician down there for a pre-op. It was a resident with no DS experience, but he tried very hard. LOL He went out to consult with the ped, then came back and asked when her last Thyroid and CBC work was done. Hmmm...I had no clue. He went back out, then came back and told Angela, "I want you to take this paper to the lab, OK? They're going to need to get a little blood sample."

Angela looked at him like he was an alien, crossed her arms and STUCK HER TONGUE OUT AT HIM!!!!! "I said NO POKES TODAY!!!!! I'm NOT having a POKE!!!" Then refused to look at him again. We left with her trying told bag gigantic crocodile tears. When he said goodbye she stuck her tongue out at him again. LOL

So tomorrow will be another long day. BUT...if all goes according to schedule, her dad is picking her up at my house afterwards and keeping her until Sunday evening.

That means I can take a nap. I'm really needing a nap.

MRI

The MRI went fine

We got to the Neuro's office, gave Angela her night-time meds, and she slept through the entire 90 minute procedure. It was a little tough getting her to walk out to the car in the downpour we were having, but other than that it was a piece of cake.

This morning we have her IEP, then head to Mayo. It's only an hour and a half away so not a big deal. If I can get online I'll post an update tonight about what the Neurosurgeon and Neurologist say.

So what are all these tests?

Here's an explanation of the tests Angela will be having next week:

Full-spine MRI: Lots of people have had MRI's done. A full-spine MRI takes a couple of hours, and sometimes involves having dye injected. Angela had a brain MRI done a couple weeks ago and without any sedation layed perfecty still for an hour and 20 minutes! This time we're doing late in the evening and she'll have her meds so she should sleep through the entire procedure. Here's a description of it if you're interested.

SPECT: Single-photon emission computed tomography (SPECT) studies use radioactive materials to get information about blood flow and activity in the brain.

Radioactive materials are inhaled or injected and then move through the blood to the brain, where the different regions of the brain can be studied for abnormal functioning.

Angiogram of the Head and Neck:

Angiogram of the head and neck is an X-ray test that uses fluoroscopy to take pictures of the blood flow within the blood vessels of the head and neck. A thin flexible tube called a catheter is placed into the femoral blood vessel (femoral artery) in the groin or just above the elbow (brachial artery) and guided to the head and neck area. Then a dye (contrast material) that contains iodine is injected into the vessel being studied to make it more visible on the X-ray pictures.

An angiogram of the neck (carotid angiogram) can be used to evaluate the large arteries in the neck that lead to the brain. An angiogram of the head (cerebral angiogram) can be used to evaluate veins or the four arteries (four-vessel study) supplying blood to the brain. An angiogram can detect a bulge in the wall of a blood vessel (aneurysm). It can also detect narrowing of a blood vessel or a blockage in a blood vessel that slows or prevents blood flow, an abnormal collection of vessels (arteriovenous malformation), or abnormal vessels supplying a tumor. The angiogram pictures can be produced on regular X-ray films or stored as digital images in a computer.

See an illustration of the blood supply to the brain.

Why It Is Done

An angiogram of the head or neck is done to:

• Detect blockage or narrowing of the arteries in the neck that supply blood to the brain (carotid angiogram). Blood flow to the brain that is slowed or stopped increases the risk of having a stroke or a "mini-stroke" (called a transient ischemic attack, or TIA). See an illustration of an angiogram of a TIA.
• Evaluate symptoms that might indicate problems with the arteries that supply the brain. Symptoms may include severe headaches, memory loss, slurred speech, dizziness, blurred or double vision, weakness or numbness, and loss of coordination or balance.
• Detect an aneurysm in the brain or in a blood vessel leading to the brain. See an illustration of an angiogram showing blood flow in the brain.
• Investigate the pattern of blood flow to a tumor. This can help determine the extent of the tumor and guide treatment.

Thursday

Wow...Looooooooooong day here today! First, I had a meeting with a public health nurse and new social worker about the TBI waiver. (traumatic brain injury) I am in LOVE with this man. Well, maybe not HIM, but that he is here to represent ANGELA, and HER NEEDS, and not the needs of the county. So they have all the medical documentation, along with everything from the psychiatrists, etc. He is recommending her for THE HIGHEST level of the waiver, called a TBI-NB waiver. Meaning Traumatic Brain Injury -Neuro Behavioral. This will about TRIPLE her funding! A certain percentage can be used to pay me, a certain percentage for weekend respite care, a percentage for 'stuff' (we can fence that *^&$# pond in our back yard...or fill it in!) A certain percentage for training (Like the conference PLUS a PCA to go with us!!!) Oh, and ANY needs that the social worker deems immediate necessities. He wants all our doors to be hardwire alarmed with a panel that talks and tells you WHICH door opened...like "basement walk out" or "Garage service door". We could do things like put in taps that CANNOT scald her, handrails in the shower, a certain type of shower head, etc. (he wasn't saying she needed those things, just listing them as examples.) OMG, that FOUR HOUR meeting MADE MY WEEK!!!!!!

Then there were the phone calls. HOLY COW I've heard from everyone today! Without repeating it all, here's the plan....

Tuesday 8:30 pm to the hospital for a full-spine MRI. We'll not only be ruling out AAI, but checking for an other anomolies along the way. Ths is to rule out her problems being orthopedic vs. neurological. This is a 2 hour scan. We're doing it late so I can give her nightime meds and she sleeps through the whole thing instead of having to sedate her with an IV.

Weds at 12:30 arrive at Mayo Clinic for check-in. 1:20 meet with the neurosurgeon and neurologist. When that's done she'll be admitted to the hospital, stay overnight then Thursday morning will have an SPECT and Angiogram. (and a couple other tests that I've now forgotten the name of.) THESE are THE TESTS that we need done. When these are done we will know if we're going to Boston, Standford....or worst case scenario....nowhere but to sit back and wait for her to have a stroke.

So that's what I know. I'm having a good day today because I have a new love in this new social worker. He said things to me, or asked questions that I'd been feeling for months, but never been able to put words to. Things like, "So...when was the last time you were able to let your guard down and just be you?" Ummm HELLO! 11 years ago when she had her first stroke!

So, that's our day. We'll see how next week goes.

5:30 PM here

Here's what was said at our dr. appt. Our Neuro spoke with the neuro at Mayo, and was of 1:00 was still playing phone tag with the NS in Boston. BUT, the Mayo dr. said at very least Angela needs a couple more test done which goes along with what Dr. Scott said. She's now being schedule at Mayo for a PET scan. This is next in the "least invasive first" process. They'll read the PET scan right then and to the arteriogram while we're there if it's decided she needs one. One problem, on Friday we started her on aspirin therapy and she's supposed to be off that for 10 days before they can do it, BUT the Mayo guy is leaving on vacation and he wants this done before he goes. So, we'll see what he says. I'll know by tomorrow afternoon what we're doing.

Another thing was everyone wants hip films done to rule out orthopedic problems causing the gait issues. Our neuro is confident they are neurologically based, because her gait today is MUCH better than it was on Friday. Fluctuating gait is usually a neuro problem, not ortho. But since nobody ELSE has seen her walk (like the other 2 neuros) he wanted those done. We did them today before we left, and will have those results back in the morning.

I also to him about Dr. Steinberg at Stanford, and that I'd heard he had another procedure developed, and gave him the contact information. He's getting in touch with him as well.

One thing that he mentioned is that Angel hasn't had any major strokes yet. I told him Dr. Scott send me a copy of a paper he published last year that said in the 16 patients with DS that he treated over several years, only a couple had strokes. The rest had only TIA's similar to Angela's.

Speaking of that study. Our neuro has always wondered if all kids with DS have some narrowing of their carotid arteries. Dr. Scott's paper says:

Down syndrome may, through its constellation of
associated systemic manifestations, expose patients
to the cumulative effects of other associated risk
factors for moyamoya syndrome and thereby increase
the patients’ susceptibility to the disease. It
has already been noted that certain clinical conditions
are associated with moyamoya syndrome independent
of Down syndrome, including congenital
heart defects,21 autoimmune disorders of the thyroid,
23,27,28,46 and head and neck irradiation.11,25,33,37
Two of our patients with Down syndrome developed
acute lymphocytic leukemia before the onset of clinical
symptoms attributable to moyamoya syndrome;
the incidence of leukemia in Down syndrome is 10-
to 20-fold that in the general population.58,59 Both
patients received systemic and intrathecal chemotherapy
as part of their treatment protocol, and 1
patient received a course of cranial radiotherapy.
How these clinical associations independently affect
the risk for developing moyamoya syndrome among
children with Down syndrome is unknown. However,
given the risk of significant strokes among patients
with moyamoya syndrome, coupled with the
effectiveness of treatment if it is instituted before
debilitating strokes occur, we suggest that prophylactic
screening of patients with Down syndrome for
moyamoya syndrome with MRI/MRA may be useful.
A similar strategy to screen for moyamoya syndrome
among patients with sickle cell disease has
been advocated by some. Additional study of the
cost-effectiveness of this strategy may be warranted......

The association of Down syndrome with moyamoya
syndrome is still not understood. The fact that
so many children with Down syndrome have cardiac
structural anomalies suggests that the genetic defect
in Down syndrome may also lead to disturbances in
the formation or growth of vascular structures elsewhere
the body. Patients with Down syndrome have
been noted to have an increased number of retinal
vessels, compared with gender- and age-matched
normal control subjects. These vessel are said to have
a “spoke-like” pattern, with frequent early branching,
and this observation lends support to the postulate
that there is a general vascular dysplasia in
Down syndrome.55 Other vascular abnormalities described
in Down syndrome include abnormal nailbed
capillary loops and renovascular hypertension.56
Neuropathologic investigation of a child with Down
syndrome who did not have moyamoya syndrome
revealed significant structural abnormalities in vessels
of the circle of Willis, ie, irregular internal elastic
membrane surrounding regions of marked endothelial
hyperplasia, which again suggests a possible underlying
structural change in the cerebral arteries of
children with moyamoya syndrome and Down syndrome.

And so we wait to hear from Mayo.

Update 9:00

I talked to our Neuro's office. We're going in at 12:30 today to discuss "what's next". He's talking to Dr. Scott now, and has already talked to Dr. Meyer at Mayo. I'm guessing Angela will be admitted for the last 2 tests she needs, those will be sent to Boston and we'll know more from there. Dean is going with me to the appointment.

What's the hold up?

Ok, we were supposed to wait while our Neurologist is contacting Dr. Scott out in Boston and Dr. Meyer at Mayo. As of 5:30 last night he hadn't talked to either of them yet.

Last night I was up in the wee hours, and remembered that years ago Dr. Scott was VERY easy to get in touch with. So I looked him up and emailed him. I hit "send" and 4:35 this morning. At 5:28 he replied!!!!

It's clear from his reply that he has NOT heard from our dr. yet. This really irritates me!!!
.................
Ms. Spring, I don't remember your daughter's studies, but most kids with
moyamoya -- and certainly those with Down Syndrome-- have a progressive story with one stroke after another. They should undergo revascularization surgery when the diagnosis is made -- of course, providing that the arteriogram, etc show the appropriate disease., and I am certain that this is what I told you years ago. I am attaching an article on Down and moyamoya that we published last year. Your daughter needs an arteriogram and surgery should be considered for her at this point. If you would like to come to Boston for evaluation and treatment, I would be happy to help with her care. Please contact my office
............................

I've already left a message with our neuro's nurse. I tried to be nice. I tried to be nice. I tried to be nice.

Watched pots never boil

5:30...wouldn't you know I walk outside for 5 minutes and that's when the phone rings. Sadly, only a voicemail message from the Neurologist's nurse saying he still hadn't talked with Dr. Scott in Boston or Dr Meyer at Mayo.

.....................sigh.............................

TICK TOCK PEOPLE!

UGH It's 3:45 pm. I'm going crazy waiting for the neurologist to call me back. I know he's busy, and that we're not his only patient, but HELLO I'M GOING CRAZY HERE!!!! I've talked to 3 or 4 different doctors today, but none of them were the one I WANTED to talk to!

Meanwhile Angela, who is sick with strep and has a high fever, is hosting a show in our empty living room cuz it's just like a stage. Maybe I can get a video tape of of it.

Lack of organizational skills...HELP?

I wish I could figure out how to get the newer posts to the bottom of the page, and the old ones at that top. Instead I have to tell people to start reading FROM THE BOTTOM of the page. That is just backwards!

Anyway, we are sick here. Angela and I both have strep. She's just tired, while I'm running a fever and pretty much a mess. Sometime during the night Dean was talking to me, but I was hallucinating and thought he was Yira, warrior princess. I have no idea where that come from, but...well...Dean doesn't make a very good warrior princess.

There is a lot to do today. First, the floor guys are supposed to be here at 7:30 to put one last coat on the wood floors. I promise not to mess them up this time and won't set foot on them until this time tomorrow morning. What I'd really like to do is get a hotel, but finding one that will take 3 dogs and 8 puppies might be tough.

10:00 I'm supposed to take Zurri for her level I obedience graduation. Not sure if I'm going to or not. I'm no longer contagious, but I feel like crap. We'll see.

Sometime today.....I need to take Angela to Minneapolis childrens to get hip films and a ton of blood work done. We need to see if her funky gait has affected her hips at all. And the blood work...I dunno, there's a whole list of stuff they're looking for. Some commonly related to DS, and others not so much.

Tonight if Angela is feeling up to it is Special Olympics track and field practice. She loves this!!! Some of her best friends from school are there. She is completely independent while there and rarely has any behavioral issues, which makes me go hhhmmmmmm. But it's already warming up here and since she doesn't sweat this year might prove to be a tough one for her. Last year we had to drop out after the area meet because it was just too hot for her to attend practices.

Amongst all of this, there is a litter of puppies to care for. They're growing fast and their families are so excited to find out which one they're getting. I have a couple matched in my head, but won't make anything final until next week when they've reached 6 weeks old.

For me, today should be a better day. I'll be too busy to do much thinking about anything. You know what they say about "idle hands". Mine certainly won't be today. Thanks so much for thinking of us, and praying for us. I don't think I can wait till Weds to talk to the Neurologist. That is just too far away. I'll try him today and see if he's heard anything from the other dr.s and if he's had time to research whatever it is he was looking for. I'm thinking it was a needle in a haystack.

WHAT????????

I think the doctor thought I wasn't hearing what he was saying. I know my face was blank. Often when parents receive devastating news, their brain stops processing information at that point, and they don't hear anything else the doctor has to say. I think when he looked at me and said, "This is a grave situation" he thought I'd gotten to that point.

But I was hearing him, this doctor whom we've been seeing for 11 years. In fact, it was 11 years ago this winter that I first heard the term, "Moya Moya disease" from this very doctor. But this time, I expected him to say the disease had finally progressed to the point of needing to do surgery. Instead I heard something much different. Instead I heard, "We can't do anything the way it is right now. If it were MMD in the classic form, we could operate. But this isn't classic, and it leaves us in a very difficult situation."

I asked the couple of semi-intelligent questions that I could think of, and we were sent on to the appoitment desk. There were some films and bloodwork that needed to be done...THAT DAY. As Angela and I reached the appointment desk, I handed the nurse a form I'd been carrying with me for 3 days. It was a new release form authorizing the Neurologist to contact one of our other specialsts ASAP to fill her in. As I handed it to her and explained what it was, I lost it. I became a blubbering puddle of tears that was unable to talk. I managed to squeak that we'd come back on Monday for the tests. I couldn't do it today.

I couldn't do it that day because what I really needed to do was get to a phone. My cellphone isn't working at the moment and I needed to tell someone. I needed to call Dean...my rock...and I needed to call my mom....my anchor. Since I didn't have a cell it meant waiting till I got home. A whole hour....

I dropped Angela off at school and her teacher asked how the appointment went. That's all they needed to ask to send my over the edge. I told them the news then went home to call Dean and Mom.

Now that I've had a couple days to process everything, I'm finding myself thinking all sorts of crazy (and sometimes dark) things. For instance, I had to run pick up my check, and while driving had to wait at a light for a funeral procession. I found myself wondering if I should be setting aside money for funeral costs? My friend who's son has A.L.L. (a form of leukemia) said this is normal. In fact, she has sat in church and thought, "I like this song...it would be a good one for a funeral."

The strangest part of all is that our life has not changed. Other than adding aspirin to Angela's medication regimine, things are still the same. She's the same kid she was on Thursday. When you get a scary diagnosis, shouldn't something change? Like suddenly you have more doctor appointments for some kind of treatment. But so far, nothing has changed for us outwardly. Inwardly there's been a lot of change for Dean and I. Suddenly we know something about Angela that we never knew, that is following us like a big dark cloud, all knowing.

There are good things that have changed. I understand the behaviors now, and that Angela is in pain all the time and we didn't know it. (though we've suspected it for a long time) It's much easier to be patient with a child who is in pain and acting out because of it, than with a child who is just acting out for the sake of being mean.

So where do we go from here? We wait for the Neurologist to call. He promised to do so by Weds morning. He wanted to talk to the Neurosurgeons in Boston, and at Mayo to see if they had any brilliant ideas. Until then.....we wait....we watch....we try not to be paranoid....Most importantly we love our little girl and cherish every moment we have with her. We could have days, weeks, months or years, but we will cherish them.

Angela videos

Here are some cute Angela videos. She's such an amazing kid. You'd never know by watching her all that she's gone through, or will go through.

April 25, 2007

Angela shows the puppies

Special Olmypics 2006

Special Olympics 2006

Angela in Jr. Dog handling class, summer 2006

Angela Jr Handler class

Angela's Special Olympics Team
Spring 2006

The RAVE

A grave diagnosis

I guess it's time for me to start blogging on a daily basis. I need to be able to keep my thoughts together, and to keep people updated without spending double the time to do it.

Some of you are from my forum family and already know. Others are just stumbling upon my blog. So, here's a post I made to my forum family on Friday, April 27, 2007.
..................................................................

Early this morning we had Angela's appointment with the neurologist. Since her MRI was done a couple weeks ago and I hadn't heard anything, I'd decided that "no news is good news". And then a few days ago I realized...hmm...when her EEG was done they called me in a couple days to say it was normal. When her EKG was done they called me in a couple days to say it was normal. I haven't heard boo about the MRI....and now I know why.

I really didn't think it was possible, but what Angela has is worse that MoyaMoya disease.

In Moyamoya disease, there is a narrowing (sometimes blockage) on the internal carotid artery in the brain. As the narrowing progresses the brain, being in short supply of blood and oxygen, will start to create new blood vessels that kind of search out new blood supply. When this happens they can do a procedure, (very basic explanation here) that gives the brain a new blood supply to leach onto to. It's major neurosurgery.

So, as an infant Angela was found to have a narrowing on her Right carotid artery. But there was no revascularization, however her SYMPTOMS followed those of MMD. We've watched her all these years. About 3 or 4 years ago she started having TIA's (transient inschematic attacks, which are basically like mini-strokes.) but her MRI showed now changes in either the narrowing or revascularization, leaving everyone puzzled.

About 4 weeks ago she started having what are called "Tripping spells". Apparently these spells are indicative of a new blockage, so we repeated the MRI.

The MRI results are devestating.

Angela now has a significant blockage on her LEFT carotid artery that was not there before. It is WORSE than the original blockage on the right. There is NO revascularization going on. THAT is the worst part of all. If there were revascularization starting, we'd have an operable situation. Without the revascularization, the problem blood vessels that are located in the brain stem are not operable.

In the 4 weeks since the Neuro last saw her, Angela's gait has changed significantly, and it's because the right side of her body is now affected as well. Her speech is somewhat more difficult to understand. Her pupils are uneven. She is very tired. He said the behavioral issues are most likely because she ALWAYS has some level of a headache, and the escalations are problably when she's at more of a migrain level.

He is contacting the Neurosugreons in Boston and Mayo who specialize in MMD and have more experience with the disease in kids with DS to see if they have any thoughts. All of her records are being sent to each of them. All the rest of her symptoms fit MMD, the narrowing on both the left and right Carotid arteries fit MMD, but the lack of revascularization has him puzzled.

Angela's biggest risk right now is a massive stroke. A massive stroke on the left side of the brain at the level of the brain stem will not be survivable.

I am in shock and numb. I have known for years there was something more happening. In the last month my stomach has been in knots knowing that there is something more. But I expected him to say the MMD had progressed to the point where it's time to do the surgery. I didn't expect to be told it's likely there is nothing they can do.

Life is crazy in my house

Life is crazy in my house. And no....no pun intended! There are days when I wonder how I'm going to maintain my sanity and make it to the next one. People are constantly asking me how I do it? Well...I don't...HE does! HE keeps me going. HE helps me get the overwhelming number of errands, doctor appointments and other tasks done. Apparently, though, HE doesn't feel the housework is that important because I never seem to be able to get it done......sigh......

It's two more days until Halloween, and Angela is so excited. Quite awhile ago she decided she wanted to be an astronaut. It took me a bit to pull together a costume, but I did. When I asked her what I should be, she looked at me like I was clearly not thinking this all the way through, because what else could I be, except for an "Astronaut helper"? D..U...H!

But the best was a couple days ago. The new church we found was having a harvest festival and the kids needed to dress like cowboys/girls. As is typical for me, I remembered this event somewhere around 5:00 pm, and it started at 6:45. Cowboy clothes were NOT something I had floating around here. But I had a flash of intelligence, and remembered the neighbor boy who is king of dress-up! I called and talked to his mom, who just so happened to be cleaning up their basement playroom and had just gathered all the cowboy stuff into one spot. About 5 minutes later her kids were at my door with the anticipated western gear. Angela was thrilled to death, and couldn't wait to get the stuff on. I must admit, she makes one very beautiful cowgirl!

As Long As It's Healthy

originally written in January 2006

How many parents, when they discover they're expecting a baby, say, "We don't care if it's a boy or a girl, as long as it's healthy"? This amazes me!

If you don't yet have kids of your own, I want to warn you...you need to go back to school! If you already have kids of your own, start taking night classes. You should be focusing your new training on a masters in psychiatric medicine. That is because as a mom, nobody tells you that you need to be prepared to deal with these kinds of issues...just in case.

My 17 year old son has, among a long list of other things, parnoid schizophrenia. At least that's what we think it is. When you go in your child's room and you find that he's writing letters to the demon voices in his head....honestly...it will instantly make the hair on the back of your neck stand at attention.

I bet nobody has told you there may come a day when that beautiful baby, the one who had the huge smiles for you in his crib each morning, would one day threaten to end your life in a most gory way.

I bet nobody has told you that little boy who was so proud of himself when he learned to take those first steps would one day use those same feet to run away over and over again, leaving you at home to worry in the dark. Is he cold? Is he hungry? Is he alive? Did he finally find the bridge he's been talking about? I bet nobody has told you that some kids attempt suicide at a very early age, and that when they go to bed at night you don't know if they're going to get up again in the morning.

I certainly never thought my morning ritual would include the emotions it does now.

Each morning, when it's time to wake my son up for school, I stand outside his bedroom door willing myself to open it. I open it slowly, holding the knob firmly to have something to hold onto should I find the worst.

Because of the angle of his bed and the way he sleeps, his foot is the first thing I see every morning, and every morning the first thing I check for is the color of that foot. Is it blue? Grey? Does it flinch if he hears me?

I step around the tall dresser that is right by the door, too see if his face is showing as he usually sleeps with it covered. If I can see his face, I wait before I say anything. I want to see him......its the only time he is at peace...when he is sleeping. Sometimes if I look closely I can see the baby he was 17 years ago.

But most of the time I can't see his face so I'm forced to say his name. Softly....I say it softly...I want him to remember my voice is not always harsh and frustrated. Sometimes it is soft and loving...."Tyler....Tyler...." I hate that he doesn't hear me right away. It adds yet another moment of fear. "Tyler, are you awake?"

The moan of a sleeping teenager brought back to conciousness is music to my ears. But I'm not out of the woods yet. I have learned.... from experience... that the "moan" can mean he's so drugged from an overdose of something that he's unable to speak, and that I have just minutes to call an ambulance.

I have to get him to talk.

"Do you have anything going on after school today?"

His answer, though mumbled, lets me know all is right for the moment, and I can go on with the rest of my day.

Unfortunately, I have been known to let my guard down too soon, like today. No, he didn't try to hurt himself. Instead he threatened to hurt me. To put an end to MY suffering. With eyes clearly possessed by something evil and very foreign, this disease called schizophrenia, he stared me down and dared me to challenge him. Instead I locked myself in the bathroom and called the police and an ambulance to take him away.....again.....

What I would give to have that smiling toddler standing in the crib waiting for me. What I would give for that.......

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Enlightenment

You know, some people just don't think before they speak. I have been guilty of doing this myself on occassion. But when people don't think before they TYPE? Oh come on! That's why you can save all kinds of things as "drafts" before hitting the "publish" button.

Another blogger recently wrote about "Bumper Sticker Thinking", and happened to make a really dumb comment. He saw a "My kid has Down Sydndrome" bumper sticker and thought that parent must surely hate the "My kid is an Honor Roll Student" stickers.

Ummmmm why would that bother a parent of a child with Down Syndrome? This guy hasn't thought it through.

When parent puts a bumper sticker about their child on the car, it's not so much for everyone else, but for their child! It shows my kid, "Hey! I'm so proud of you that I'm willing to share it with the whole world!"

Should I be any less proud of my child who has Down Syndrome? NO WAY! Not only does it show my daughter how proud I am of her, but it creates awareness for others who may one day find themselves sitting face to face with a doctor who is telling them results of their prenatal testing.

Did you know it is now estimated that 95% of babies with Down Syndrome are aborted? How is this different than genocide? The Down Syndrome community is so incredibly awesome. I cannot even begin to describe it. It's not just that your child has a disability and there is a common bond, but there is something truly special about people who have DS. It's not something I can even begin to describe. It is something you have to experience for yourself. But that community is slowly dwindling.

I have new aquaintance who is a first grade teacher in a HUGE metropolitan school district. Considering most kids with DS are now mainstreamed, she finds it quite odd that in the last 6 years she's not had one child with DS in her class. NOT ONE! Why??? Because they're being eliminated before they take their first breath. Mostly because medical professionals who only know the MEDICAL side of things encourage parents to terminate. But OB/GYN's, unless they have a personal connection to Down Syndrome, don't know anything past that child's first couple weeks of life. If they did know more, they'd realize it's not such a big deal! I'll tell you what, if my child had just DS to deal with in life.....HA!...life would be GRAND!

So I'm gonna put TEN MORE bumper stickers on my car, all about Down Syndrome. When you're sitting behind me at a stop light you can choose to read them, and read about my kid. And then, one day when you're sitting in the doctors office, hearing that the baby you tried so hard for is not quite as "perfect" as you hoped, you'll remember my car, and remember that life with Down Syndrome is NOT a curse, it is a GIFT.

Edited to add: I and one other parent commented on the blog belonging to the writer of "Bumper Sticker Thinking". There were a couple other parents as well, but our comments inluded links to videos of kids with DS being SUCCESSFUL in life. Apparently he didn't like that. Maybe that was hitting below the belt in his eyes. Anyway, he deleted those links. Interesting.

The gift of Perspective

This was originally written in Jan of 2006, but somehow it disappeared! It now appears in the book "Gifts, Mothers reflect on how children with Down Syndrome changed their lives."
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Ok..I took the kids to the tubing hill (huge hill, the city has tubes out, and down you go.) but there were no tubes today, and our ONE sled (for the 3 kids) sucks so I left the boys with Angela and ran to Walmart up the street for more.

I get to Walmart, and they are all sold out of the cheap ones, but have a bunch of the $25 SUPER FAST RACER SLEDS. I wasn't planning on spending $50, but if I showed up at the hill with empty handed Angela was absolutely freak out, so I had no choice but to purchase what the sign says is "the fastest sled in the neighborhood".

When I got back to the hill , the 4 of us (Noah, Tyler, Angela and I) are standing at the top of this huuuuuuuuuge hill. It's about 200 yards, with a good 50-75 yard flat area at the bottom. We decide to send Angela down, and one of the boys was going behind her to help back up the hill. She flew. She flew so far and Noah and I were at the top of the hill laughing at how fast and far she was going.

And then I saw it.

OMG I saw it.

At the end of the "runway" at the bottom of the hill....and nobody ever makes it that far...is about a 2 foot drop... TO A POND!!! And on the closest edge of the pond is about a 4 foot round hole of open water. Angela was headed straight for the open water.

I started freaking out and screaming "Someone grab that kid!! QUICK CATCH HER BEFORE SHE GETS TO THE POND!!!!" But the 25+ adults that she flew past just watched her go by. With sleds zooming past me, I start running down the middle of the glaze ice hill, trying not to take my eyes off her, sure she's going to go under. I can hear Tyler running and screaming behind me, and Noah behind him. Had someone had a video camera, it would have looked at one of those Chevy Chase movies. Where the kid is zooming down the hill 100 miles and hour, then cut to the fat mom, running in slow motion down a very steep, ice covered hill, with arms going like windmills, and legs not quite keeping up, mouth open in a slowed down distorted scream, and the teenagers coming from behind trying to bypass the screaming banshee mother.

I felt so very far away from her. OMG...I felt so far away.

I watched as she dropped off the edge, and SKIMMED ACROSS THE OPEN WATER, coming to a stop right smack in the middle of the pond, with her feet dangling over the edge of the ice. Laughing hysterically at her very exciting ride.

I'm still running, and screaming at her to not move. But I am fat, and slow,and Tyler got to the pond before me. He stood at the edge of the open water. I turned to look for someone else to help, and everyone had wandered away. Nobody even realized we are there. (Probably because they are all unconscious from getting whacked in the head by my flailing arms, and are now deaf from my piercing screams.)

"Go get her Tyler!" I screamed. He looked at me like I was insane. Ofcourse, I AM insane at the moment. I know it's not a very deeppool..probably 6 or 7 feet deep. I just cannot stand there knowing if shemoves she's going to go under. It occurs to me I'm a horrible swimmer.Tyler walked through the long weeds and snow to a different part of thepond, and as he stepped on the ice we could hear it crack. He looked at me, clearly scared to death and I screamed "GO!" and he did. And he carried her back to the side and I was freaking out. OMG....

I have never been so scared in my entire life. I had visions of funerals anda drowning kid and all the horrible things I could possibly think of. All Ireally wanted to do was go home.

But Angela had FUN and wanted to do it more! So we kept one person at the bottom to stop her. She never made it that far again, even if one of ushadn't been down there to stop. Evenso, we're never going to that hill again!