Friday, September 26, 2008
Guess I'm not over it.
Yesterday when I went to the grocery store, I saw a man with Down syndrome bagging groceries. It made me sad. I want my son to be more than a bagger at a grocery store when he's 40.
Monday, September 15, 2008
staying the course
Dr. LaJoie said to stay the course with the ACTH. I guess she expects it may take a little longer to show it's true usefulness. So that means another week of full dose injections and major cranky baby followed by yet another EEG and weaning off of the ACTH. If all goes well with the EEG that will be the end of it...I think. If not, Mermaid will then start up another medication that I am not learning how to pronounce unless she actually has to take it. But it is not quite FDA approved and imported from Canada. Either way, I want to figure out how to donate my unopened vials of ACTH to NORD because each of those suckers costs about the same as a new car and I'd love to share that gift with another family.
Tangent about scrubs
Scrubs are a scam. Granted, there was never any PSA indicating that medical professionals would dump all of the street clothes in a locker and then have a scrub down with boiling water and lye soap prior to donning their sterilized scrub suit especially for medical providers. But "scrubs" sounds like scrubbed, tubbed, germ free and ready to give you sanitary medical attention. However, I see these people in scrubs walking the streets, buying their lunches from street vendors, leaning against exterior walls and taking smoking breaks. Scrubs give a false sense of germ security. I think people really wear scrubs because it makes wearing pajamas to work acceptable. I get it. Medical professionals work crazy hours and it's hard to tell whether it's day or night when you're living in florescent lights for 18 hours straight. I should get some scrubs so that I can sleep in them and then roll out of bed ready for work. What do you think? Should I get the plain or something a little edgier with hearts and angels? ;)
Sunday, September 14, 2008
It's not a problem.
I think being a mother is pretty demanding. And, of course, it's never the only thing any of us is doing. I don't know, but I anticipate being a mother to Lizard Loaf in particular will be extra demanding. I've decided I don't have time to battle with my weight anymore. Mother of two, one of them with DS... I can't imagine when I'd find the time! So, I've decided to be thin and be done with it. I'll give myself a month off after my boy busts out. Maybe six weeks. And then I'm moving on, leaving the weight behind.
*phew* What a relief! I feel better already...
Mermaid resurfaces
The past several weeks have been full. We met Mermaid's service coordinator. She came into our home and explained the whole process to us and then arranged for some evaluators to check out Mermaid's sweet skills. We picked a provider that would send all the evaluator's at once rather than spread out over the course of a week or so. We all anticipated the 5 evaluators emerging from their van in their matching scrubs a la A TEAM (now you know how old I am ;). My Hero and I were fiddling around with a potential theme song for them, but alas they ultimately had to spread it out over three different days. They did still wear scrubs. That all happened at the beginning of August and we were anxious to get services going.
Before the evaluation reports even arrived something else started going on with out little Mermaid. I thought it was gas pain at first or possibly hiccups. Her body would jolt a little almost like a startle reflex and then it would happen again and again seconds apart. As this pattern emerged a friend connected me with her friend, I'll call her Providence. Providence has a gorgeous daughter with Downs who had recently been diagnosed and treated for infantile spasms. Of course this all came together during the last two weeks of September when every medical professional in the entire city was on summer vacation. It took me four or five days just to get a live person on the phone to make an appointment for Mermaid. Providence was so encouraging giving me phone numbers and checking in with the professionals she knows to help Mermaid get in to see a pediatric neurologist. She told me not to give up nor to put it off.
The Tuesday before labor day weekend we got the golden ticket which included an appointment with pediatric neurologist extraordinaire Josiane LaJoie. It's a beautiful name and she is a beautiful person. We started with a little EEG and then a meet and greet with Dr. LaJoie. The surprise ending was that Lily and a friend won a three night/three day stay at the NYU medical center including unlimited crushed ice and round the clock EEG and video surveillence. I was the friend. I called My Hero and we hustled to figure out what to do with the other four children.
The upshot is that Lily had five seizures, for that's what they are, while being monitored. She was prescribed a steroid like medication called ACTH. Initially, our insurance denied the request because this miracle drug costs about six thousand dollars per shot (.5 ml). The six week therapy would cost roughly 175K. I would ask for physician back-up, too. An organization called NORD (National Organization for Rare Disorders) called and donated the first precious vial of ACTH to buy us a little time to work things out with the insurance. We would not have been allowed to leave the hospital without the medication plus I had to get trained to inject Mermaids chubby little thighs. If you want to donate to something, NORD is a worthy cause. Meanwhile, the lovely women working for the insurance tel-pharmacy in SD have little babies, too so they kept me on the phone until it was all worked out. Ultimately, the entire supply arrived simultaneously.
I thought we would get to leave the hospital Thursday morning after proving that I could give Mermaid the shots. I practiced on every kind of fruit I could find. I practiced on the vinyl "daybed" in the hospital room. I even practiced on myself a few times to get a feel for it so I wouldn't choke up when I had to inject my sweet babe. That's when they told me she would still have to stay the night for observation after her initial dosage. *sniff* Our whole family was disappointed, but we were reunited Friday and grandma stayed an extra night. We had Mermaid's blood tested a couple of times over the next six days and her paternal grandparents came to relieve m-grandma and immerse all the kids in extra attention after the deficit. I think we were all suffering attention deficit disorder and all the attention really helped!
At the end of the first week on ACTH Mermaid wasn't having so many clusters or episodes just a little spasm here and there. They upped her dosage. I took her in on Friday for another EEG and it still doesn't look perfect. I was pretty depressed to learn it wasn't working and that even blinks and stares represented electrical misfiring in her brain. I've been pretty discouraged for about 48 hours. I went to church today, though, and I'm starting to feel uplifted and even hopeful. I'll meet with the neurologist Monday to see what's next. I'll also be meeting with an osteopath on Tuesday who may be able to help. I'll report back on that. Lastly, we finally have our IFSP which translated means: big meeting withe everyone to decide what early intervention services Mermaid will receive from the city.
Now for the special thanks section:
Special Thanks to My Hero for being the most available and optimistic best friend.
Special Thanks to our homeschooling friend on the east side for keeping our four children entertained and fed during a 6 hour play date and told us that it was no big deal. It was a big deal to us.
Special Thanks to Mermaid's maternal grandmother for interrupting her visit to other grandchildren to ride the un-exotic chinatown bus in the middle of the night to care for her four motherless grandchildren at my house. She also donated her favorite mini flashlight to the cause so I could read or visit or see my way to the bathroom at night without disturbing our lovely roommates.
Special Thanks to My Hero's employers for being so understanding about skipping so many work hours to be with Mermaid and I or with the fantastic four at home.
Special Thanks to friends and fellow church members who spontaneously started bringing meals.
Special Thanks to Providence who continued to encourage me and send positive thoughts our way. She even came by the hospital for a 1 hour visit bringing healthy snacks full of protein, magazines requiring very little brain (which was all I had), and a sweet toy for Mermaid.
Special Thanks to our dear upstairs neighbors who entertained me with hours of conversation at the hospital one night. Always a pleasure.
Special Thanks to our UWS homeschool recess coordinator who continues to send prayers and offers to help our way. She is always thinking of my kids and sending email links to websites and articles that might interest them. This is especially good because I keep forgetting to think about them.
Special Thanks to NORD and to our insurance tel-drug ladies in SD...you know who you are!
Special Thanks to Grandma and Grandpa DC who spent their labor day weekend giving us all the attention and Finnish meatballs we could hope for. It was very restorative.
Special Thanks to my Washington Heights friend who runs with me in the mornings, asks me about Mermaid, invites my children for play dates and doesn't try to stop my tears when they come once in a while.
Special Thanks to all our family and friends who were thinking of us and praying for us!
Before the evaluation reports even arrived something else started going on with out little Mermaid. I thought it was gas pain at first or possibly hiccups. Her body would jolt a little almost like a startle reflex and then it would happen again and again seconds apart. As this pattern emerged a friend connected me with her friend, I'll call her Providence. Providence has a gorgeous daughter with Downs who had recently been diagnosed and treated for infantile spasms. Of course this all came together during the last two weeks of September when every medical professional in the entire city was on summer vacation. It took me four or five days just to get a live person on the phone to make an appointment for Mermaid. Providence was so encouraging giving me phone numbers and checking in with the professionals she knows to help Mermaid get in to see a pediatric neurologist. She told me not to give up nor to put it off.
The Tuesday before labor day weekend we got the golden ticket which included an appointment with pediatric neurologist extraordinaire Josiane LaJoie. It's a beautiful name and she is a beautiful person. We started with a little EEG and then a meet and greet with Dr. LaJoie. The surprise ending was that Lily and a friend won a three night/three day stay at the NYU medical center including unlimited crushed ice and round the clock EEG and video surveillence. I was the friend. I called My Hero and we hustled to figure out what to do with the other four children.
The upshot is that Lily had five seizures, for that's what they are, while being monitored. She was prescribed a steroid like medication called ACTH. Initially, our insurance denied the request because this miracle drug costs about six thousand dollars per shot (.5 ml). The six week therapy would cost roughly 175K. I would ask for physician back-up, too. An organization called NORD (National Organization for Rare Disorders) called and donated the first precious vial of ACTH to buy us a little time to work things out with the insurance. We would not have been allowed to leave the hospital without the medication plus I had to get trained to inject Mermaids chubby little thighs. If you want to donate to something, NORD is a worthy cause. Meanwhile, the lovely women working for the insurance tel-pharmacy in SD have little babies, too so they kept me on the phone until it was all worked out. Ultimately, the entire supply arrived simultaneously.
I thought we would get to leave the hospital Thursday morning after proving that I could give Mermaid the shots. I practiced on every kind of fruit I could find. I practiced on the vinyl "daybed" in the hospital room. I even practiced on myself a few times to get a feel for it so I wouldn't choke up when I had to inject my sweet babe. That's when they told me she would still have to stay the night for observation after her initial dosage. *sniff* Our whole family was disappointed, but we were reunited Friday and grandma stayed an extra night. We had Mermaid's blood tested a couple of times over the next six days and her paternal grandparents came to relieve m-grandma and immerse all the kids in extra attention after the deficit. I think we were all suffering attention deficit disorder and all the attention really helped!
At the end of the first week on ACTH Mermaid wasn't having so many clusters or episodes just a little spasm here and there. They upped her dosage. I took her in on Friday for another EEG and it still doesn't look perfect. I was pretty depressed to learn it wasn't working and that even blinks and stares represented electrical misfiring in her brain. I've been pretty discouraged for about 48 hours. I went to church today, though, and I'm starting to feel uplifted and even hopeful. I'll meet with the neurologist Monday to see what's next. I'll also be meeting with an osteopath on Tuesday who may be able to help. I'll report back on that. Lastly, we finally have our IFSP which translated means: big meeting withe everyone to decide what early intervention services Mermaid will receive from the city.
Now for the special thanks section:
Special Thanks to My Hero for being the most available and optimistic best friend.
Special Thanks to our homeschooling friend on the east side for keeping our four children entertained and fed during a 6 hour play date and told us that it was no big deal. It was a big deal to us.
Special Thanks to Mermaid's maternal grandmother for interrupting her visit to other grandchildren to ride the un-exotic chinatown bus in the middle of the night to care for her four motherless grandchildren at my house. She also donated her favorite mini flashlight to the cause so I could read or visit or see my way to the bathroom at night without disturbing our lovely roommates.
Special Thanks to My Hero's employers for being so understanding about skipping so many work hours to be with Mermaid and I or with the fantastic four at home.
Special Thanks to friends and fellow church members who spontaneously started bringing meals.
Special Thanks to Providence who continued to encourage me and send positive thoughts our way. She even came by the hospital for a 1 hour visit bringing healthy snacks full of protein, magazines requiring very little brain (which was all I had), and a sweet toy for Mermaid.
Special Thanks to our dear upstairs neighbors who entertained me with hours of conversation at the hospital one night. Always a pleasure.
Special Thanks to our UWS homeschool recess coordinator who continues to send prayers and offers to help our way. She is always thinking of my kids and sending email links to websites and articles that might interest them. This is especially good because I keep forgetting to think about them.
Special Thanks to NORD and to our insurance tel-drug ladies in SD...you know who you are!
Special Thanks to Grandma and Grandpa DC who spent their labor day weekend giving us all the attention and Finnish meatballs we could hope for. It was very restorative.
Special Thanks to my Washington Heights friend who runs with me in the mornings, asks me about Mermaid, invites my children for play dates and doesn't try to stop my tears when they come once in a while.
Special Thanks to all our family and friends who were thinking of us and praying for us!
Tuesday, August 26, 2008
First Contact
I just moved. It's not that big a deal, really. I've moved at least 10 times in my life, and that's not counting any of my various apartments in college, etc. I figured once we got settled, I'd contact the local support group and join the party. No big deal.
It was harder than I thought.
The group out here is pretty big, I guess, and very organized. Their website is amazing, and actually helped me choose the hospital where I want to deliver Lizard Loaf, which also led me to my new doctor (who I hope is amazing... she sure sounds like she will be). For contact info, there was a phone number and general email address, too. I tried the number first. Even just dialing it, I felt anxiety. What do I say? I got some sucky news this past summer, so will you guys be my friends? Everything I thought of sounded pretty much as bad. But even worse, no one answered. The contact number for this support group went to a voice mail. "We try to check these messages frequently," it hedged. Try?! So, if you're busy, my petrified call for help would be what? Over-looked? Misplaced? Out-dated? Forgotten? I started feeling like I already belonged in the 'round file' (aka-trash can). No one was going to listen to my message. There wasn't going to be anyone in my new town to help me. I was alone.
*sigh*
I cried a little. Then I sent a terse note to the email listed and left the computer. My daughter's preschool tries to use redirection as the primary response when children get upset or misbehave, and I thought I'd try the same thing. I don't remember what I did, but an hour later my husband happened to check my email. I had such a wonderful note from one of the board members of the local group, and she had responded to my email within 10 minutes. It was a few days before I responded, and I still haven't called to set up a time to meet her and her son, but hearing from her has been such a comfort, such a strength. I'm not in the 'round file'; I'm not alone. My new friend says that I'm part of a special club now and that 'we stick together'. I think I believe that.
It was harder than I thought.
The group out here is pretty big, I guess, and very organized. Their website is amazing, and actually helped me choose the hospital where I want to deliver Lizard Loaf, which also led me to my new doctor (who I hope is amazing... she sure sounds like she will be). For contact info, there was a phone number and general email address, too. I tried the number first. Even just dialing it, I felt anxiety. What do I say? I got some sucky news this past summer, so will you guys be my friends? Everything I thought of sounded pretty much as bad. But even worse, no one answered. The contact number for this support group went to a voice mail. "We try to check these messages frequently," it hedged. Try?! So, if you're busy, my petrified call for help would be what? Over-looked? Misplaced? Out-dated? Forgotten? I started feeling like I already belonged in the 'round file' (aka-trash can). No one was going to listen to my message. There wasn't going to be anyone in my new town to help me. I was alone.
*sigh*
I cried a little. Then I sent a terse note to the email listed and left the computer. My daughter's preschool tries to use redirection as the primary response when children get upset or misbehave, and I thought I'd try the same thing. I don't remember what I did, but an hour later my husband happened to check my email. I had such a wonderful note from one of the board members of the local group, and she had responded to my email within 10 minutes. It was a few days before I responded, and I still haven't called to set up a time to meet her and her son, but hearing from her has been such a comfort, such a strength. I'm not in the 'round file'; I'm not alone. My new friend says that I'm part of a special club now and that 'we stick together'. I think I believe that.
Tuesday, July 22, 2008
Mermaid's EKG/Echo
Sweet hair day for Mermaid! ;)
Mermaid had her EKG and echocardiogram on the same day as LL (Lizard Loaf). It's destiny. The MD felt confident telling me that his preliminary viewing of 80 something pictures of her heart indicated no defects. The total number of photos topped 130+ by the time we left and they'll be comped over before the official report is filed, but I'm feeling pretty good about that diagnosis. =)
Fortunately, I had a girlfriend explain what to expect and how to prepare. I want to be that girlfriend for you, in case any of you are going through this for the first time. Step one: plan to be at the hospital for a while. I packed a couple of Clif bars for me and a bottle for Mermaid. The EKG wasn't a big deal. Mermaid did have to strip down to her diaper and it took a couple of minutes to put special stickers all over her and hook up the electric leads, but the actual test only took a couple of minutes max. then they removed all of the stickers, though some residue remained on Mermaid's belly. I asked the technician how the results looked and she just said she wasn't a physician and couldn't discuss it with me. That left me nervous. I learned they really just can't tell you. It's not allowed.
Then we waited to be called for the echocardiogram. I had heard this would take about an hour once they started. In our case it was 2 technicians and 2 doctors and 1 hour 45 minutes. Mermaid finished her bottle and I had to down a Clif bar while they were changing technicians. Technically, no food was allowed. What's a nursing mom to do? I had left my home three hours earlier! It's important that the child hold very still especially during the echo, so being asleep or having a bottle to drink for that 1-2 hour process is so helpful. The last thing you want to do is be sent home and have to reschedule because your baby wasn't cooperating. Also, baby must be bare chested so it might be nice for baby to wear a button up or just take baby's top off and keep baby comfy in a blanket until it's your turn. Maybe baby will even fall asleep and you wouldn't want to have to wake them up by taking their clothes off for the echo. Now, the technicians could certainly help the process by warming the ultra sound gel. Mermaid was actually pretty good and took her sweet time with the bottle, but towards the end got really bored with being calm and wanted to play with the cables stuck to her shoulder. The technician was working right under her neck, so Mermaid went to work sucking on the technician's hands.
It was amazing watching her little heart pump so steadily. I could clearly see all of the chambers working. Then the technician would flip a switch to help her see blood flowing in and out and it came in three different colors: blue, red, yellow. It was like fireworks exploding in Mermaid's chest. When the doctor came in to tell me there were no defects, I felt like there were fireworks exploding in my chest too! Woo Hoo!
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