Hey Alpha-1 Community!
Hold onto to your hats. The producer of Prolastin, an augmentation therapy for Alpha-1 lung disease, is going public. Hot of the presses...
Talecris Biotherapeutics (TLCR) Files $1 Billion IPO
07-30-2007 09:06:31 AM
Talecris Biotherapeutics Holdings (Nasdaq: TLCR) has filed a registration statement with the SEC for an initial public offering of its common stock. The Company intends to apply to list its common units on the Nasdaq under the symbol “TLCR.” The proposed maximum aggregate offering price is $1 billion.
The offering is being made through Morgan Stanley, Goldman, Sachs & Co. and JPMorgan.
Talecris Biotherapeutics is a biopharmaceutical company that is one of the largest producers and marketers of plasma-derived protein therapies in the world. Talecris develops, produces, markets and distributes therapies that extend and enhance the lives of people suffering from chronic and acute, often life-threatening, conditions, such as immune deficiency disorders, alpha-1 antitrypsin (AAT) deficiency, infectious diseases, hemophilia and severe burns.
Monday, July 30, 2007
Saturday, July 28, 2007
Alpha-1 Antitrypsin Deficiency & the Human Genome
I found a really great summation of Alpha-1 Antitrypsin Deficiency on the Human Genome web site. Enjoy the reading.
http://www.genome.gov/19518992
http://www.genome.gov/19518992
Wednesday, July 25, 2007
Tumble
This morning, Gracie did her usual sprint down the stairs on her way to putting her shoes on before going to day care. I watched her long blond locks flowing behind her in a sort of "look at me world carelessness." After her recent collision with our wall, I yelled after her, "Be careful on the stairs Grace." She consistently stumbles and falls, and my husband and I worry the most when she is on the stairs. I was thinking, "Jeesh, that kid! She makes my heart skip a beat sometimes."
Grace jumped down and over the last three stairs and skipped off to get her shoes on. I was about three quarters of the way down our berber carpeted stairs, and Meghan was behind me one-by-carefully-one making her descent down the stairs. We were in a little bit of a hurry, but nothing too dramatic.
"Keep going Meghan. We need to get to school," came out of my mouth. I could hear Grace in the background whining that her socks were too tight, and that there was a "line" across her toes. I'm pretty sure I was beginning to tell Grace that I would be along shortly to help her with her latest sensory assault, the seam in her socks.
I had just reached the bottom of the stairs when I heard a noise coming from Meghan. I can't even really describe the noise, but I knew it wasn't a good one. As I spun around, I saw a flash of Meggie's yellowy hair flying through the air. I realized that she was in mid-fall down the stairs. The next thing I saw was the purple soles of her Dora the Explorer tennis shoes, which were hitting the wall along the stairs. She was now in full rolling tumble down the stairs, and she was coming at me very fast. "Catch her! Catch her!" was all that I thought. In an instinct, I outstretched my arms toward her rolling log of a body, and shoveled my hands underneath her shoulders and lower legs. With a scooping motion, I guided her rolling body into my chest as I knelt on the stairs. With just a few millimeters to spare, Meghan missed cramming her head into the wood banister on our stairs. My left hand saved her precious preemie head from injury.
"Waaaaaaaaaaaaaaaaa." came from Meghan along with sputtering coughs. I think her fall knocked the wind out of her.
"Are you okay? Let's go sit on the couch and see what happened to you honey." Meghan was sobbing, but mostly in fear. I inspected her, but somehow, she came away unscathed. She was just shaken up.
I thought, "Holy crap! That was a close one." I had adrenaline in spades for a good half an hour afterward.
And there I was thinking Grace needed to be careful. If there is one thing I learned today, it is that children certainly keep us parents on our toes.
Whew!
Grace jumped down and over the last three stairs and skipped off to get her shoes on. I was about three quarters of the way down our berber carpeted stairs, and Meghan was behind me one-by-carefully-one making her descent down the stairs. We were in a little bit of a hurry, but nothing too dramatic.
"Keep going Meghan. We need to get to school," came out of my mouth. I could hear Grace in the background whining that her socks were too tight, and that there was a "line" across her toes. I'm pretty sure I was beginning to tell Grace that I would be along shortly to help her with her latest sensory assault, the seam in her socks.
I had just reached the bottom of the stairs when I heard a noise coming from Meghan. I can't even really describe the noise, but I knew it wasn't a good one. As I spun around, I saw a flash of Meggie's yellowy hair flying through the air. I realized that she was in mid-fall down the stairs. The next thing I saw was the purple soles of her Dora the Explorer tennis shoes, which were hitting the wall along the stairs. She was now in full rolling tumble down the stairs, and she was coming at me very fast. "Catch her! Catch her!" was all that I thought. In an instinct, I outstretched my arms toward her rolling log of a body, and shoveled my hands underneath her shoulders and lower legs. With a scooping motion, I guided her rolling body into my chest as I knelt on the stairs. With just a few millimeters to spare, Meghan missed cramming her head into the wood banister on our stairs. My left hand saved her precious preemie head from injury.
"Waaaaaaaaaaaaaaaaa." came from Meghan along with sputtering coughs. I think her fall knocked the wind out of her.
"Are you okay? Let's go sit on the couch and see what happened to you honey." Meghan was sobbing, but mostly in fear. I inspected her, but somehow, she came away unscathed. She was just shaken up.
I thought, "Holy crap! That was a close one." I had adrenaline in spades for a good half an hour afterward.
And there I was thinking Grace needed to be careful. If there is one thing I learned today, it is that children certainly keep us parents on our toes.
Whew!
Monday, July 23, 2007
Discharged from NICU
Three short years ago today, we brought Meghan home from the hospital. She weighed a whopping 4 pounds, 9 ounces, and left with a sleep apnea monitor attached to her.
She had lived at our local hospital for 79 days in the neonatal intensive care unit and then transitioned to the pediatric unit a few weeks before discharge. If I had not looked at the calendar today, I would have forgotten the significance of the date. I suppose it is a good thing that I’m beginning to let those scary times fade into the fabric of our lives, but her prematurity is still there, just about every day, reminding us. It is in the subtleties, for which a casual observer would miss.
The left side of Meghan’s body weakens the more she uses it. Eventually, she ends up dragging it along with her. God bless her for not noticing or missing a step anyway.
The beautiful shape of her face is well…; some may call this harsh, toaster-headish, where the sides of her head are flat. This is a badge of microprematurity I suppose.
Yesterday my little sister noticed that Meghan’s ankles are tipping in again. I shook my head yes and made a mental note to get her back to the physical therapist for a new set of orthotics.
When Meghan needs to see something off to her side, her entire head pivots to the left or right as necessary instead of just moving her eyes to the left or right. This is because she has little to no peripheral vision. Her retinopathy of prematurity (ROP) took care of that aspect. Again, Meghan is none the wiser to this fact.
Meghan’s personality is extremely fiery. She is bull-headed to say the least, but we’ve always assumed this aspect of her pays homage to why Meghan survived the NICU in the first place.
With the size of Meghan’s personality being so ginormous, you’d assume she was large too. That is not at all the case. Meggie weighs in at 26 pounds at 3 years old. She is tiny, like she has always been.
These are just a few of the subtleties. There are hundreds more I could offer, so I hope you get the idea.
Yes, we are blessed. Yes, we are lucky she survived, but I guess today’s entry is about reminding my readers that prematurity lasts a lifetime. It has implications that last far past being discharged from NICU. Being born early presents many challenges throughout the life span. Don’t let the media fool you into believing that all is well upon discharge. Things can and often do get better, but former preemies lives are not the same as children born full term. Former preemies have challenges. They can and do overcome some of them. So my advice is to pay attention to your full termer’s miraculous ability to race across the room at top speed, and then turn on a dime to scoop a toy off the floor. Take note that he/she doesn’t fall while trying to get the toy or go crashing into a nearby wall. Take note of your blessings. I know I have noted our blessings.
Yes, Meghan is a miracle. Yes, we deal with her former preemie issues everyday.
So Meghan, I pay homage to your daily struggles to make your life similar to the other children in your life. You are one of the strongest little creatures I know. I love you baby girl, and am so incredibly proud of you and your sheer will to live.
Love,
Mama
She had lived at our local hospital for 79 days in the neonatal intensive care unit and then transitioned to the pediatric unit a few weeks before discharge. If I had not looked at the calendar today, I would have forgotten the significance of the date. I suppose it is a good thing that I’m beginning to let those scary times fade into the fabric of our lives, but her prematurity is still there, just about every day, reminding us. It is in the subtleties, for which a casual observer would miss.
The left side of Meghan’s body weakens the more she uses it. Eventually, she ends up dragging it along with her. God bless her for not noticing or missing a step anyway.
The beautiful shape of her face is well…; some may call this harsh, toaster-headish, where the sides of her head are flat. This is a badge of microprematurity I suppose.
Yesterday my little sister noticed that Meghan’s ankles are tipping in again. I shook my head yes and made a mental note to get her back to the physical therapist for a new set of orthotics.
When Meghan needs to see something off to her side, her entire head pivots to the left or right as necessary instead of just moving her eyes to the left or right. This is because she has little to no peripheral vision. Her retinopathy of prematurity (ROP) took care of that aspect. Again, Meghan is none the wiser to this fact.
Meghan’s personality is extremely fiery. She is bull-headed to say the least, but we’ve always assumed this aspect of her pays homage to why Meghan survived the NICU in the first place.
With the size of Meghan’s personality being so ginormous, you’d assume she was large too. That is not at all the case. Meggie weighs in at 26 pounds at 3 years old. She is tiny, like she has always been.
These are just a few of the subtleties. There are hundreds more I could offer, so I hope you get the idea.
Yes, we are blessed. Yes, we are lucky she survived, but I guess today’s entry is about reminding my readers that prematurity lasts a lifetime. It has implications that last far past being discharged from NICU. Being born early presents many challenges throughout the life span. Don’t let the media fool you into believing that all is well upon discharge. Things can and often do get better, but former preemies lives are not the same as children born full term. Former preemies have challenges. They can and do overcome some of them. So my advice is to pay attention to your full termer’s miraculous ability to race across the room at top speed, and then turn on a dime to scoop a toy off the floor. Take note that he/she doesn’t fall while trying to get the toy or go crashing into a nearby wall. Take note of your blessings. I know I have noted our blessings.
Yes, Meghan is a miracle. Yes, we deal with her former preemie issues everyday.
So Meghan, I pay homage to your daily struggles to make your life similar to the other children in your life. You are one of the strongest little creatures I know. I love you baby girl, and am so incredibly proud of you and your sheer will to live.
Love,
Mama
Tuesday, July 17, 2007
Got the Abstract!
Yahoo! Thanks Sarah.
I don't want to violate copyright law, but here is a snipet of the article's conclusions:
A1AT protein expression is increased in preeclamptic placentas. This is the first demonstration that polymerized A1AT is present in serum and urine of patients with preeclampsia, and that this material is bound to placental vascular endothelium. This suggests that the polymerized A1AT may play a role in the pathogenesis of endothelial damage in preeclampsia.
Can I translate this into English words? Yes.
Warning: I'm not a medical professional nor do I play one on TV.
Alpha-1 proteins are sticking together (polymers) and "globbing up" the tiny blood vessels (vascular endothelium) of the placenta in patients with the Z type of Alpha-1. When a placenta doesn't work well, the baby does not grow well (intrauterine growth restriction, IUGR). In a pregnant mom, if the vascular system is screwed up, hypertension can happen. Also, blood vessels get leaky, and swelling occurs, more than the usual kind. Finally, the kidneys begin to spill protein. The kidneys are intimately involved in the vascular system. Hence, the nasty preeclampsia monster appears, as it did for me twice.
Busy, busy, busy, but thought some of my readers would be interested. If I get my hands on the entire article, I'll post more.
Looks like I'm hot on the trail of why I got preeclampsia...at least, I'm hot on the trail of the very intelligent, smarter-than-me researchers. LOL
I don't want to violate copyright law, but here is a snipet of the article's conclusions:
A1AT protein expression is increased in preeclamptic placentas. This is the first demonstration that polymerized A1AT is present in serum and urine of patients with preeclampsia, and that this material is bound to placental vascular endothelium. This suggests that the polymerized A1AT may play a role in the pathogenesis of endothelial damage in preeclampsia.
Can I translate this into English words? Yes.
Warning: I'm not a medical professional nor do I play one on TV.
Alpha-1 proteins are sticking together (polymers) and "globbing up" the tiny blood vessels (vascular endothelium) of the placenta in patients with the Z type of Alpha-1. When a placenta doesn't work well, the baby does not grow well (intrauterine growth restriction, IUGR). In a pregnant mom, if the vascular system is screwed up, hypertension can happen. Also, blood vessels get leaky, and swelling occurs, more than the usual kind. Finally, the kidneys begin to spill protein. The kidneys are intimately involved in the vascular system. Hence, the nasty preeclampsia monster appears, as it did for me twice.
Busy, busy, busy, but thought some of my readers would be interested. If I get my hands on the entire article, I'll post more.
Looks like I'm hot on the trail of why I got preeclampsia...at least, I'm hot on the trail of the very intelligent, smarter-than-me researchers. LOL
Sunday, July 15, 2007
Preeclampsia and Alpha-1 Antitrypsin Deficiency
About 3 years ago on a lark, I looked up the location of the Alpha-1 Antitrypsin Deficiency gene on the human genome web site. To my surprise, I had an "aha" moment when I noticed that a different gene for hypertension (that I have) was startlingly close to the Alpha-1 Antitrypsin Deficiency gene on the distal long arm of chromosome 14.
I've always wondered about this:
* I have the M2Z genotype for Alpha-1 Antitrypsin Deficiency.
* Both of my children have ZZ Alpha-1, a severely deficient genotype.
* Plus the fact that I have a form of hypertension that responds to an ACE inhibitor.
Did these facts contribute to the development of my severe preeclampsia???
It seems someone else (a smarter medical research team than I am) has indeed wondered the same thing.
Today, someone found my blog by doing a google search of "A1AT preeclampsia." This piqued my interest so I also searched using the same key words, and well, I stumbled on an article that was published in the American Journal of Obstetrics and Gynecology.
I'm simply "dying" to read this article, but I'm too cheap to spend $30 on something about which I can't even read an abstract. This is all that I can find about the article:
Evidence for alpha-1-antitrypsin (A1AT) polymerization in preeclampsia: A novel mechanism for endothelial cell injury
Irina Buhimschi1, Guomao Zhao2, George Saade3 and Catalin S. Buhimschi2
1Yale University, Obstetrics/Gynecology, New Haven, Connecticut
2Yale University, Ob./Gyn.&Reprod.Sci, New Haven, Connecticut
3University of Texas Medical Branch at Galveston, Obstetrics & Gynecology, Galveston, Texas
483. Available online 4 December 2006.
I've got to get myself to the real library to find that article. Or, hey Mom, can you share it with me? Do you subscribe to AJOB? Let me know.
If this provides me with the answer for "why" I developed severe preeclampsia twice, my brain may finally allow me to progress to the stage of acceptance. I mean...a mom can only hope to ease the guilt of having two premature babies somehow.
I've always wondered about this:
* I have the M2Z genotype for Alpha-1 Antitrypsin Deficiency.
* Both of my children have ZZ Alpha-1, a severely deficient genotype.
* Plus the fact that I have a form of hypertension that responds to an ACE inhibitor.
Did these facts contribute to the development of my severe preeclampsia???
It seems someone else (a smarter medical research team than I am) has indeed wondered the same thing.
Today, someone found my blog by doing a google search of "A1AT preeclampsia." This piqued my interest so I also searched using the same key words, and well, I stumbled on an article that was published in the American Journal of Obstetrics and Gynecology.
I'm simply "dying" to read this article, but I'm too cheap to spend $30 on something about which I can't even read an abstract. This is all that I can find about the article:
Evidence for alpha-1-antitrypsin (A1AT) polymerization in preeclampsia: A novel mechanism for endothelial cell injury
Irina Buhimschi1, Guomao Zhao2, George Saade3 and Catalin S. Buhimschi2
1Yale University, Obstetrics/Gynecology, New Haven, Connecticut
2Yale University, Ob./Gyn.&Reprod.Sci, New Haven, Connecticut
3University of Texas Medical Branch at Galveston, Obstetrics & Gynecology, Galveston, Texas
483. Available online 4 December 2006.
I've got to get myself to the real library to find that article. Or, hey Mom, can you share it with me? Do you subscribe to AJOB? Let me know.
If this provides me with the answer for "why" I developed severe preeclampsia twice, my brain may finally allow me to progress to the stage of acceptance. I mean...a mom can only hope to ease the guilt of having two premature babies somehow.
Thursday, July 12, 2007
Alpha-1 Public Service Announcement
My support group leader, Noreen, made this wonderful public service announcement about Alpha-1.
Here is her description of the video:
1 min 18 sec - Jul 11, 2007
This is my PSA on the condition called Alpha-1 Antitrypsin Deficiency. It is a spoof on the Viking genes that have been passed down ... all » through hereditary means. The mutated gene pair is called ZZ and can cause emphysema, cirrhosis and/or panniculitus. As many as 25 million people in the U.S. are unaware that they are carriers of the Z gene. It is commonly misdiagnosed as asthma in young adults. Alpha-1 can lead to a lung or liver transplant. I am a lung-affected Alpha and was diagnosed at age 38 with advanced emphysema.
Click on the movie to make it play.
Here is her description of the video:
1 min 18 sec - Jul 11, 2007
This is my PSA on the condition called Alpha-1 Antitrypsin Deficiency. It is a spoof on the Viking genes that have been passed down ... all » through hereditary means. The mutated gene pair is called ZZ and can cause emphysema, cirrhosis and/or panniculitus. As many as 25 million people in the U.S. are unaware that they are carriers of the Z gene. It is commonly misdiagnosed as asthma in young adults. Alpha-1 can lead to a lung or liver transplant. I am a lung-affected Alpha and was diagnosed at age 38 with advanced emphysema.
Click on the movie to make it play.
Wednesday, July 11, 2007
Monday, July 09, 2007
Sensory Nightmare
When Grace was in the NICU, we began to observe that she was a baby who needed much attention and love. She frequently fretted or cried in her isolette. Grace's NICU nurses said she just needed extra love, which was a nice way of saying this kid is high-needs. Charlie and I quickly found that if we cradled her head in the cup of one hand and balled up her feet and legs into the other hand, then Grace would calm down a bit. I remember feeling her whole body begin to relax in my hands. It seemed to be one of a few things I could do for her while in the NICU.
Since those times, I continue to be a calming force in Grace's world. As much as Grace fills my heart with love, the opposite can sometimes also be true. Sometimes, it can feel like Gracie is literally sucking the life force right out of me. Yesterday was one of those days...
The church was old, and as I had guessed, it was not air conditioned. The humidity was oppressive, and I kept wondering if the candles were melting. I felt like I was melting. The conditions were not great, and I was pretty darn sure that my children would not cooperate well. In advance of the start of the wedding, I had prepped the girls for what their behavior should be during the ceremony. We talked about sitting still and using whisper voices.
Karma was not working in our favor. By some odd coincidence, the videographer set up his tripod just one pew behind us on the left. Maybe he didn't know how incredibly loud whispering children sound like? This heightened my anxiety even more since I didn't want my misbehaving children mucking up the happy couple's lasting tribute.
Knowing the girls so well, their behavior lived up to my low expectations. At one point during the ceremony, Meghan picked up a yellow church comment card and promptly swiped it at Grace's face. Grace screeched in pain. "Owie! Owwwwwwwwwwwwwwwwwwwwwwww!"
The card had given her a paper cut close to her eye. (This was the same eye injured a few weeks ago when Grace careened out of control in a wall.) My right hand cupped her mouth shut to minimize the loudness of the screaming. I pulled Grace onto my lap while Charlie scolded Meghan.
My arms squeezed against the sides of Grace's upper arms in a hug. I've learned over the years that she likes gentle pressure off and on over and over again. This seems to calm her quicker. I also showed her how to gently rub her eye using her knuckle instead of the tip of her finger. All of this was communicated in whispers, while Meghan squirmed during her scolding.
Shortly after, Grace expressed the need to use the bathroom by pointing to her crotch in a five-year-old equivalent of sign language. I smirked as she decided to point emphatically at her crotch several times to indicate the urgency. At this point, communion was being served, so I decided to take the opportunity to take both of the girls to the bathroom. As we walked down the side aisle of the church, Meghan made sure to stomp her "beautiful Easta" shoes in a clipity-clapity cadence.
"No stomping Meghan!" I whispered.
We found the bathroom, and Grace wiggled and squirmed while she attempted to pull down her underwear, which were sweatily stuck to her skin. At this point, she also decided that her bracelet was bothering her too. She yanked it off, and placed it on the counter top. Meghan quickly spotted the bracelet, and grabbed it.
"Girls, please don't talk out loud. Everyone in the church can hear us in here. Use your whisper......"
"Ahhhhhhhhhhhhhhhhhhhhhhhhh! Owwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwww!" came stuttering out of Grace's mouth. Meghan, being the catalyst for Grace's disdain, had picked up the glass bead bracelet, and sort of sling-shot it at the back of Grace's right arm. A large welt was forming before my eyes.
"MEGHAN! You're in a time out!" Meghan didn't seem phased as I cupped my hand against Grace's mouth a second time. Grace screamed in agony again. My mommy brain was getting pissed. It was like a gigantic calamity of bad behaviors, and it only seemed to be ramping up instead of winding down. Meghan stood against the wall and smirked at Grace. In my mind, I kept thinking, "You little..."
Upon finally exiting the sweltering bathroom, I spotted a water cooler. Since it was so hot, I figured the girls needed more fluids. I filled small plastic cups with water and handed them to Grace and Meghan. They gulped the water down, and both tried to refill their cups using the water spigot at the same time.
"MEGHAN, me first!"
"Noooo GRACE!"
"SHHHHHHHHHHHHHHHHHHhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh!" I could feel my temper flaring up just like the afternoon sun.
Fortunately, the wedding ended at this point, and the bride and groom entered the foyer of the church together. I thought, "Oh thank God in heaven, I don't have to make them be quiet anymore, and we can get back in the van to cool down in the A/C."
Our next stop was a museum on the lakefront, where the reception would take place.
Charlie drove the mini-van into an underground parking structure. We all got out of the van, and walked to an elevator. The doors opened, and we got in the elevator. Charlie was holding Grace's hand, and I was holding Meghan's hand. A moment passed, and the elevator wasn't moving. It was warm in the elevator so I pushed the "open door" button, and took Meghan out of the elevator. I turned around to see the doors closing again, and Grace's face. She had a painful expression on her face, and was about to cry loudly. The doors closed, and I heard muffled loud crying coming from Grace. Charlie didn't leave the elevator, and Grace decided that her world was about to end.
"Waaaaaaaaaaaaaaaaw! I'm scared! I'm scared! I'm scared! Moooooooooooommmmmmmmyyyy!"
The doors opened again, and Charlie guided Grace off the elevator toward me. "I don't like, like elevators, Mooommmmmmyyyyy!"
"You're fine Grace. The doors opened, and you got off the elevator. Calm down. Mom and Dad are taking care of you. You're fine!"
Next, we found an elevator that worked. I scooped up a screaming Grace, and forced her into the next elevator. "Noooooooooooooooooooooooooooooooo! I'm scared! I'm scared! I'm scared." Her pleas frequently come in threes.
It was a quick ride, and we got off on the first floor inside the museum. A wood plank floor greeted us. I think it was supposed to simulate a dock going out onto the water. Meghan gleefully stomped her feet against the floor to make noise.
As we approached a set of glass doors, I noticed that there were fish tanks on the other side of the doors. Grace and Meghan noticed too, and ran toward a fish tank. Grace began pointing to the fish and instructing Meghan to look at every fish she was viewing. Finger prints were being left all over the tank glass, and then pseudo rain began to fall into a pool of water in the center of the room. This startled Gracie, but upon reviewing the situation, she seem to figure it wasn't a threat.
Loud, fake, thunder boomed throughout the room. I thought, "Ah crap, here we go again." Grace's hands cupped both of her ears, and she bolted toward the glass doors.
"I'm scared. I'm scaaaaaaaaaaaaaaaarrrrrrrrrrrrrrrreeeeeddd! I'm scared! I wanna go home RIGHT now, Mommy. I wanna go home!"
"Gracie, come back here. It is pretend lightning and thunder Gracie. It's pretend. Grace, come here!"
"Nooooooooooooooooooo!" She ran farther away from me, but I caught up to her. I scooped her up again, but this time she seemed heavier, as if she gained more weight in the five minutes it had been since I scooped her up last. This was getting very old, and my patience was waning. I know that Grace has sensory issues, but this was getting ridiculous.
Finally, the pretend thunder subsided. I coaxed Grace past the spot where the thunder emanated, and we walked down an incline deeper into the aquarium. Glass windows showcased many specimens of fish. Meghan squealed with delight as she spied some shiny fish. Grace pensively inspected the fish, and placed the tip of her index finger into her mouth.
At this point, Grace said again, "I wanna goooo home, Mommy. I have to go potty." It was clear to me that she'd do or say anything to get out of her sensory nightmare.
"No Grace, we are going to the party now. We'll walk past the fish, and go to the party."
She clung to my hand intently, and then suddenly stopped in terror. At this point, we arrived at a spot where we would be walking over part of a fish tank. The fish would be getting quite a view up our skirts, and well, Grace, she was not going to have any part of walking on the glass. Meghan hesitated too, but quickly figured out she wasn't going to fall in. She ran ahead a bit.
I scooped Grace up yet again, and carried her over the tank. I nearly dropped her as she wiggled and yelled again, "NOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO!"
We finally reached the end of the path, which unfortunately, resulted in yet another elevator, which would take us to the 3rd floor. "NNNNNNNNNNNNNNNNNNNNNNNNNNNOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO elevators! No elevators! No elevator! I'm not going on the elevator!"
I sighed, and made the decision to turn around and walk back the way we came. Charlie loaded Meghan on the elevator, and we turned around. Grace was not going to cooperate. She was a lost cause at this point. I defeatedly thought, "Man, this kid really needed to nap today. She is overly stimulated, and this sucks. I'm ready to go home too."
Unfortunately, I forgot about Thunder Dome, the sensory torture chamber, and needless to say, the same sensory responses came from Grace. Carrying a kicking, screaming kid in 90 degree weather in wet blanket humidity was quite an effort. At one point, my dress had hiked itself up in the struggle with Grace. I'm pretty sure that my underwear was showing, but I was on a mommy mission. I had to get her out of there, and work some Mommy magic on her. To quote my mother, I was "sweating my XXXX off."
We finally reached where we started, but we still needed to get to the 3rd floor for the wedding reception. I found a museum staff member and asked if there were some stairs to the 3rd floor. He pointed us in the right direction.
Grace dragged her feet up each stair one-by-painfully-one. We finally arrived and she saw a another bathroom. Again, she emphatically pointed to her crotch to indicate her need to use the bathroom.
"Grace, in our family, we use words to say what we want. Use words!"
"I need to go potty!"
I sarcastically thought, "Great! More stalling. Just what we need right now."
After yet another bathroom visit, I held Grace's hand and walked into the reception. I spotted Charlie at a table, and I couldn't wait to get there. I needed a drink. What was really a 10 minute event seemed to take 10 years of life off of me.
Meghan shrieked, "Mommy's here! Mommy's here!"
I slumped into a chair, and asked for a drink. My senses were shot, too.
Since those times, I continue to be a calming force in Grace's world. As much as Grace fills my heart with love, the opposite can sometimes also be true. Sometimes, it can feel like Gracie is literally sucking the life force right out of me. Yesterday was one of those days...
The church was old, and as I had guessed, it was not air conditioned. The humidity was oppressive, and I kept wondering if the candles were melting. I felt like I was melting. The conditions were not great, and I was pretty darn sure that my children would not cooperate well. In advance of the start of the wedding, I had prepped the girls for what their behavior should be during the ceremony. We talked about sitting still and using whisper voices.
Karma was not working in our favor. By some odd coincidence, the videographer set up his tripod just one pew behind us on the left. Maybe he didn't know how incredibly loud whispering children sound like? This heightened my anxiety even more since I didn't want my misbehaving children mucking up the happy couple's lasting tribute.
Knowing the girls so well, their behavior lived up to my low expectations. At one point during the ceremony, Meghan picked up a yellow church comment card and promptly swiped it at Grace's face. Grace screeched in pain. "Owie! Owwwwwwwwwwwwwwwwwwwwwwww!"
The card had given her a paper cut close to her eye. (This was the same eye injured a few weeks ago when Grace careened out of control in a wall.) My right hand cupped her mouth shut to minimize the loudness of the screaming. I pulled Grace onto my lap while Charlie scolded Meghan.
My arms squeezed against the sides of Grace's upper arms in a hug. I've learned over the years that she likes gentle pressure off and on over and over again. This seems to calm her quicker. I also showed her how to gently rub her eye using her knuckle instead of the tip of her finger. All of this was communicated in whispers, while Meghan squirmed during her scolding.
Shortly after, Grace expressed the need to use the bathroom by pointing to her crotch in a five-year-old equivalent of sign language. I smirked as she decided to point emphatically at her crotch several times to indicate the urgency. At this point, communion was being served, so I decided to take the opportunity to take both of the girls to the bathroom. As we walked down the side aisle of the church, Meghan made sure to stomp her "beautiful Easta" shoes in a clipity-clapity cadence.
"No stomping Meghan!" I whispered.
We found the bathroom, and Grace wiggled and squirmed while she attempted to pull down her underwear, which were sweatily stuck to her skin. At this point, she also decided that her bracelet was bothering her too. She yanked it off, and placed it on the counter top. Meghan quickly spotted the bracelet, and grabbed it.
"Girls, please don't talk out loud. Everyone in the church can hear us in here. Use your whisper......"
"Ahhhhhhhhhhhhhhhhhhhhhhhhh! Owwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwww!" came stuttering out of Grace's mouth. Meghan, being the catalyst for Grace's disdain, had picked up the glass bead bracelet, and sort of sling-shot it at the back of Grace's right arm. A large welt was forming before my eyes.
"MEGHAN! You're in a time out!" Meghan didn't seem phased as I cupped my hand against Grace's mouth a second time. Grace screamed in agony again. My mommy brain was getting pissed. It was like a gigantic calamity of bad behaviors, and it only seemed to be ramping up instead of winding down. Meghan stood against the wall and smirked at Grace. In my mind, I kept thinking, "You little..."
Upon finally exiting the sweltering bathroom, I spotted a water cooler. Since it was so hot, I figured the girls needed more fluids. I filled small plastic cups with water and handed them to Grace and Meghan. They gulped the water down, and both tried to refill their cups using the water spigot at the same time.
"MEGHAN, me first!"
"Noooo GRACE!"
"SHHHHHHHHHHHHHHHHHHhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh!" I could feel my temper flaring up just like the afternoon sun.
Fortunately, the wedding ended at this point, and the bride and groom entered the foyer of the church together. I thought, "Oh thank God in heaven, I don't have to make them be quiet anymore, and we can get back in the van to cool down in the A/C."
Our next stop was a museum on the lakefront, where the reception would take place.
Charlie drove the mini-van into an underground parking structure. We all got out of the van, and walked to an elevator. The doors opened, and we got in the elevator. Charlie was holding Grace's hand, and I was holding Meghan's hand. A moment passed, and the elevator wasn't moving. It was warm in the elevator so I pushed the "open door" button, and took Meghan out of the elevator. I turned around to see the doors closing again, and Grace's face. She had a painful expression on her face, and was about to cry loudly. The doors closed, and I heard muffled loud crying coming from Grace. Charlie didn't leave the elevator, and Grace decided that her world was about to end.
"Waaaaaaaaaaaaaaaaw! I'm scared! I'm scared! I'm scared! Moooooooooooommmmmmmmyyyy!"
The doors opened again, and Charlie guided Grace off the elevator toward me. "I don't like, like elevators, Mooommmmmmyyyyy!"
"You're fine Grace. The doors opened, and you got off the elevator. Calm down. Mom and Dad are taking care of you. You're fine!"
Next, we found an elevator that worked. I scooped up a screaming Grace, and forced her into the next elevator. "Noooooooooooooooooooooooooooooooo! I'm scared! I'm scared! I'm scared." Her pleas frequently come in threes.
It was a quick ride, and we got off on the first floor inside the museum. A wood plank floor greeted us. I think it was supposed to simulate a dock going out onto the water. Meghan gleefully stomped her feet against the floor to make noise.
As we approached a set of glass doors, I noticed that there were fish tanks on the other side of the doors. Grace and Meghan noticed too, and ran toward a fish tank. Grace began pointing to the fish and instructing Meghan to look at every fish she was viewing. Finger prints were being left all over the tank glass, and then pseudo rain began to fall into a pool of water in the center of the room. This startled Gracie, but upon reviewing the situation, she seem to figure it wasn't a threat.
Loud, fake, thunder boomed throughout the room. I thought, "Ah crap, here we go again." Grace's hands cupped both of her ears, and she bolted toward the glass doors.
"I'm scared. I'm scaaaaaaaaaaaaaaaarrrrrrrrrrrrrrrreeeeeddd! I'm scared! I wanna go home RIGHT now, Mommy. I wanna go home!"
"Gracie, come back here. It is pretend lightning and thunder Gracie. It's pretend. Grace, come here!"
"Nooooooooooooooooooo!" She ran farther away from me, but I caught up to her. I scooped her up again, but this time she seemed heavier, as if she gained more weight in the five minutes it had been since I scooped her up last. This was getting very old, and my patience was waning. I know that Grace has sensory issues, but this was getting ridiculous.
Finally, the pretend thunder subsided. I coaxed Grace past the spot where the thunder emanated, and we walked down an incline deeper into the aquarium. Glass windows showcased many specimens of fish. Meghan squealed with delight as she spied some shiny fish. Grace pensively inspected the fish, and placed the tip of her index finger into her mouth.
At this point, Grace said again, "I wanna goooo home, Mommy. I have to go potty." It was clear to me that she'd do or say anything to get out of her sensory nightmare.
"No Grace, we are going to the party now. We'll walk past the fish, and go to the party."
She clung to my hand intently, and then suddenly stopped in terror. At this point, we arrived at a spot where we would be walking over part of a fish tank. The fish would be getting quite a view up our skirts, and well, Grace, she was not going to have any part of walking on the glass. Meghan hesitated too, but quickly figured out she wasn't going to fall in. She ran ahead a bit.
I scooped Grace up yet again, and carried her over the tank. I nearly dropped her as she wiggled and yelled again, "NOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO!"
We finally reached the end of the path, which unfortunately, resulted in yet another elevator, which would take us to the 3rd floor. "NNNNNNNNNNNNNNNNNNNNNNNNNNNOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO elevators! No elevators! No elevator! I'm not going on the elevator!"
I sighed, and made the decision to turn around and walk back the way we came. Charlie loaded Meghan on the elevator, and we turned around. Grace was not going to cooperate. She was a lost cause at this point. I defeatedly thought, "Man, this kid really needed to nap today. She is overly stimulated, and this sucks. I'm ready to go home too."
Unfortunately, I forgot about Thunder Dome, the sensory torture chamber, and needless to say, the same sensory responses came from Grace. Carrying a kicking, screaming kid in 90 degree weather in wet blanket humidity was quite an effort. At one point, my dress had hiked itself up in the struggle with Grace. I'm pretty sure that my underwear was showing, but I was on a mommy mission. I had to get her out of there, and work some Mommy magic on her. To quote my mother, I was "sweating my XXXX off."
We finally reached where we started, but we still needed to get to the 3rd floor for the wedding reception. I found a museum staff member and asked if there were some stairs to the 3rd floor. He pointed us in the right direction.
Grace dragged her feet up each stair one-by-painfully-one. We finally arrived and she saw a another bathroom. Again, she emphatically pointed to her crotch to indicate her need to use the bathroom.
"Grace, in our family, we use words to say what we want. Use words!"
"I need to go potty!"
I sarcastically thought, "Great! More stalling. Just what we need right now."
After yet another bathroom visit, I held Grace's hand and walked into the reception. I spotted Charlie at a table, and I couldn't wait to get there. I needed a drink. What was really a 10 minute event seemed to take 10 years of life off of me.
Meghan shrieked, "Mommy's here! Mommy's here!"
I slumped into a chair, and asked for a drink. My senses were shot, too.
Sunday, July 01, 2007
Pediatric Grand Rounds is Available
Enjoy this round's compilation by Shinga at Breath Spa for Kids:
http://breathspakids.blogspot.com/2007/07/paediatric-grand-rounds-26.html
I submitted my post about Grace's ER visit.
Jen
http://breathspakids.blogspot.com/2007/07/paediatric-grand-rounds-26.html
I submitted my post about Grace's ER visit.
Jen
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