A Roller Coaster called WBC

WBC as in White Blood Cell count. Two Mondays ago, January 10, 2011, we had Owen's pre-admission bloodwork done. Surgery was scheduled for 1/20/11. On Tuesday, January 11, I received a call that O's wbc count was 29. Anything between 10-15 is normal. The drs. wanted him in for bloodwork the following day. January 12, we take O for bloodwork late in the day. At 10pm, the dr. calls and tells us the wbc count is now 32. Now we have to bring him to the pediatrician and have repeat bloodwork the following day. January 13, we have bloodwork done and we see the pediatrician. WBC count is 37.5. January 13 is the night before my grandmother's wakes. I was planning on going to dinner with my cousins. Instead, I head to the hospital for x-rays of O's chest. His breathing had been a bit labored, so everyone is expecting a lung infection. We go to the hospital, have the x-ray and are sent home with no concrete diagnosis. We are given antibiotic on our way out the door. Maybe there is a spot on his lung, maybe not. January 14 we go to the wakes all day, but we are expected to go for bloodwork following the funeral on the 15. And we do. Now the wbc count is 25.9. Okay, antibiotics must be working and we are on our way down. Bloodwork on the 17th comes back at 25.8. Wait, that's only .1. No one is happy, least of all O, who has been stuck for a week straight. Surgery is cancelled. Pulmonologist wants to see him and the x-ray from the hospital. Pediatrician wants an ultrasound of his feeding tube and recent surgical sites. I take him to both. Pulmonologist sees a partially collapsed lung and some infection. I feel relieved. We all decide to leave O alone until January 24, this past Monday. I take him for bloodwork on Monday. His wbc count is 19. His g-tube site is infected. Could that be the reason? Maybe. No one is thrilled that we found the real reason for the high count to begin with. The lung infection should have been cleared up with the antibiotic and if it were viral, the numbers should have behaved differently. Everyone is stumped. But, they have decided to put him on more meds and allow him to have surgery. I am just exhausted from this all. The emotional energy that goes into two pre-surgery weeks is amazing. Anxiety, fear, waiting, anticipating. Then it's cancelled. Do it all again and then it might be cancelled. I am not sure if I am thankful it's not or what I feel. I am sure in the back of my mind the entire time he is in, I will be having nightmares about wbc counts.

Please, as usual, keep O in your thoughts and prayers on Thursday. Keep all your fingers and toes crossed that he comes out of this perfectly fine and that he heals quickly. Thank you.

Diane Gagliardi Collins 9/10/20-1/7/11

Oh Nan, it was too early. I know you were 90, you don't have to remind me. It still feels too soon. I am so sorry I did not make it to Virginia. I know you aren't mad. I know you understand. I just wish I had. I wish I could have kissed your cheek one more time. Smelled the shalimar. Held your hand. Told you face to face, I love you. I am mad at myself. I thought I had more time. I miss you. What an example you set for us. I read your obituary today and I am so impressed. You managed to do it all and well. I aspire to be like you. I always have though. You would be so proud of your boys and your grandkids right now. We have never spent so much time talking to each other. We are sharing stories and pictures. I know you know. I know you can see us. I feel so lucky that I got to spend so much time with you over the years. Remember when you taught me how to drive on the highway? Nan, you literally had me pull onto the Bronx River with no advance warning. There were probably two inches of room for error on either side of the car and I had never been on the highway before. I thought you were nuts. I was petrified, but we made it! Remember when we baked endless cookies at Christmas time? How about the lunches at the club? Baking cookies for my wedding favors? Taking me shopping? Sleepovers? Remember the time we played golf? I hit a long, straight one down the fairway. You wanted to kill me. You got in the cart and left me standing there. It was hysterical. I think I get my competitive nature from you. Remember Rhode Island? Remember when I used to "do your eyes" for you? Remember taking walks down Ninham Road? Oh Nan. I love you. Lately, I have had to be the strongest I have ever had to be. I know that I get my strength from you. I always admired how strong you were. Strong enough to raise 5 boys, strong enough to lose Pop and keep it together, strong enough to lead our family. 22 grandkids, 27 great grand-kids. Strong enough to lead when women didn't lead. You were the best of all worlds. You raised your family, giving them your all. You worked and held offices and were a leader, while raising a family and being a wife. And it's not like you were an absent mother. You came home on your lunch to make my dad lunch. You are famous for your cooking and baking. Your meatballs...legendary. I like to think I got some of that from you, my love of cooking and serving and socializing over a big Italian meal. I just can't believe you are gone. Your nails and lips, always red. You always looked beautiful Nan. You were an amazing grandmother. I can honestly say that despite having 22 of us, you kept tabs on us. You knew what was going on in our lives. I never felt like you didn't know what we were up to. I know you are with Pop right now. I am so happy for you. He was the love of your life. You knew you had met your soul mate in Pop. And I know the two of you will watch over all of us. Keep your eye on Owen, he needs a little extra watching. I am going to put your obituary at the bottom of this. My uncles decided that in lieu of flowers at your funeral that people should make donations to Down Syndrome or amcsupport.org for Madison and Owen. I am so touched. I can't even express how amazing that is. My heart feels full. It just means so much. I know you would want it that way.

I hear your voice in my head Nan. Don't stop talking to me okay? I love you. Love, Sara (Bernhardt)


OBIT:
GAGLIARDI COLLINS, DIANE

January 11, 2011


Diane Gagliardi Collins, 90, of Kent, NY passed away peacefully with family at her bedside in Leesburg, VA on January 7, 2011. She was born in New Rochelle, NY on September 10, 1920. Diane was loved by her 5 sons, William T. Jr. (Nona) of New Port Richey, FL., J. Peter (Marty) of Kent, NY, Jeffrey M. (Tammy) of Purcellville, VA, Frank J. (Karen) of Eastchester, NY, and Brian D. (Sally) of Wappingers Falls, NY, and adored by her 22 grandchildren and 27 great- grandchildren. She was one of 7 children born to Frank M. and Mary F. (Decicco) Gagliardi of Larchmont, NY. Her father was a respected attorney who practiced law for over 50 years in White Plains. Her sister, Phinina Forbes of Fairfield, CT., and her brothers, Joseph F. Gagliardi of Larchmont, a former Mayor of Larchmont, Westchester County District Attorney and Judge, New York State Supreme Court Justice and Administrative Judge of the 9th Judicial District; Lee P. Gagliardi, of Larchmont, a United States District Judge for the Southern District of NewYork; and Anthony L. Gagliardi, also of Larchmont, a White Plains insurance executive, predeceased her. She is survived by her sisters Gloria M. Gagliardi and Mary Ann (Mitzi) Dugan, both of Fairfield, CT. Diane was a graduate of The Ursuline School in New Rochelle and attended at Good Counsel College in White Plains. In 1940, Diane married the love of her life, William T. Collins of Larchmont. Diane and Bill raised their family in New Rochelle where she was very active in local community affairs including the American Heart Assoc., American Red Cross, United Cerebral Palsy Assoc., Multiple Sclerosis Assoc., Community Chest, East End Civic and Hazelhurst Park Assocs., Civic Counsel on School Safety, and the Mayor's Columbus Day Committee. Diane, like her husband Bill, loved politics and was a strong believer in public service. She was a Republican District Leader in New Rochelle's 4th District for 10 years, served as Secretary for the 1st Ward Republican Committee, member of the Executive Committee of the New Rochelle Republican Committee, member of the New Rochelle Women's Republican Club and member of the Board of Directors of the Westchester County Women's Republican Club. In 1967, Diane was elected to the Westchester County Board of Supervisors representing constituents from New Rochelle and Pelham. She was instrumental in the drafting and passage of legislation creating the present Westchester County Board of Legislators. Diane was then elected to the newly created Board and was the first woman to hold the position of Vice-Chairperson of the Board. She also served as the Deputy Westchester County Clerk in charge of the County Department of Motor Vehicles and in 1978 was appointed as Deputy Westchester County Clerk in Charge of Naturalization. Diane remained in this position until she retired in the early 1990s. In retirement, she remained active as a volunteer at Putnam Hospital Center, Carmel, NY. Diane, like her husband, father, brothers and sons, was an avid golfer and played the game regularly. She is a former member of Rye Golf Club, Rye, NY, Banksville Golf Club, Banksville, NY, where she was the women's club champion in the 1970s, and Mahopac Golf Club, Mahopac, NY. To her sons, she was the perfect mother and a remarkable person; always loving, supportive of their efforts and always willing to be helpful in times of need. Diane is now with her God, and her adoring husband, Bill, who predeceased her in 1987. The family will receive friends at Cargain Funeral Home, 10 Fowler Avenue, Carmel, NY on Friday, January 14, 2-4 p.m. and 7-9 p.m. A Funeral Mass is scheduled for 10:00 a.m. on Saturday, January 15, at St. James the Apostle Church, 14 Gleneida Avenue, Carmel, NY. In lieu of flowers, donations may be made to Down Syndrome Assoc. Hudson Valley, 14 Zerner Blvd., Hopewell Junction, NY 12533 or to www.AMCSupport.org. CARGAIN FUNERAL HOMES, INC. 10 Fowler Avenue Carmel, NY 10512 (845)225-3672

A comedy of errors

Owen had surgery on Monday. He had a few different procedures at the same time to limit the amount of time he goes under anesthesia. Needless to say, we spend a couple of days in the hospital with him and he came home yesterday around 2:30 pm. I initially thought he would only stay one night, however, after seeing the feeding tube site on the first day, I realized that nurses or not, we were not ready to go home until we all felt more comfortable with it. The other surgery (testicles etc...) left him with many small incisions, but only really require some bacitracin and being left alone. Those I can handle. The feeding tube site is much better now and I won't go into details.

I spent Tuesday during the day, in the hospital attempting to make sure we had all our ducks in a row with respect to nursing, diet, orders for the feeding tube, equipment that was to be delivered for the feedings and oxygen monitoring during the feeds. I spoke to no less than 10 people, who all had it covered. I spoke to the nursing team. Everyone had it covered. Appointments were set up for Wednesday so Nick would be able to get Owen home mid after noon, the equipment was to be delivered at 4pm, the nurses were coming around the same time to do paperwork and then learn the equipment and it was all going to run smoothly.

Yeah right.

I am pretty sure my blood pressure must have been through the roof last night. Discharge went smoothly for the most part. There was the small issue of Nick leaving the hospital without orders for the nurses with respect to the feeding tube, but if that was all that was going to go wrong, I could handle that. I called, things were faxed and everyone knew what the plan was. (Mind you, at 9pm last night, when unpacking the hospital bags, I found the orders folded up and placed in the bag by my husband, but I digress.)

The nurses came and started paperwork with Nick. I come home a little early so we can all learn the pump together. At this time, its the witching hour for the babies. Everyone is crying and Soledad, the babysitter is trying to keep them busy. Gavin is jumping on furniture, so I am alternating between attempting to sternly (but nicely- there are people watching) tell Gavin to stop jumping on my furniture through clenched teeth, while running into the living room to kiss babies from time to time, because they see I have walked in the door and no one is happy that they are not getting my attention (yes, life does revolve around mommy at this age) and giving as much information as I can to the nurses, who have turned my kitchen into nurse central.

This goes on for a while. Dinner is not going to happen unless I order something. At some point, Soledad has to go home. Owen can't sit in the kitchen because he needs to be laying down. So I pace the rooms, answering questions, calling for chinese and smiling at babies and attempting to feed them, while looking for infant tylenol so the nurses can write down all the doses. Apparently, this is all very technical and an order has to be written for everything they do for Owen, including give tylenol.

In the interim, it dawns on us, that the equipment is around 2 1/2 hours late. Nick makes some calls and "Dwayne" (name has been changed to protect his job, because it's rough out there right now and I would not want to be the cause of him getting fired, although he should be) calls to tell me he will be there in 30 minutes, no more. That was at 6:09 pm. At 6:48, Dwayne has not arrived. At 7:10 Dwayne has not arrived. I call Dwayne because there are 3 nurses in my home waiting to be trained on the equipment. The house feels very full. And I like all of the nurses very very much. Its just busy and the least relaxing thing on earth. Dwayne answers his phone and I pretty much yell at him. He is more than 3 hours late...I have a nursing staff waiting for his arrival...He said a half hour, no later...etc. He says he is around the corner. Great.

The next thing that happens is that I hear yelling out on the street. I am on the phone with the feeding therapist, because we have a new one and we need to schedule for the following week, so I was multi-tasking, on top of my multi-tasking. So I hear the yelling and sure enough, Dwayne has pulled up on my one way street and due to the snow banks, just cannot figure out where to put his van. Dwayne. Park. It. Anywhere. You. Can. Find. A. Spot. EVEN IF ITS UP THE F#$*ing BLOCK!!!!!! The man in the van behind him is screaming as many expilitives as I can think of already because he can't get by him. I run to find Nick, who apparently has already went out there due to the yelling.

Eventually Dwayne finds a dug out "area" to shove his van. It's not a parking spot, or else I would have referred to it that way. Nope, its an area. He brings the boxes inside. I hear honking. Rapid, feverish honking. I tell Dwayne that I think his van is blocking traffic. He stares at me stupidly. (I actually think he thinks I am the stupid one! This just amuses me.)

I unpack the boxes and expect Dwayne, even through the honking, to show us how to use the stuff, because that's what he is supposed to do. On more than one occassion, Dwayne picks up the feeding pump and says, "this is not a feeding pump." To which the nurses say, "Yes it is." So much for Dwayne educating us. Honking continues. Dwayne unpacks our suction machine. WHAT SUCTION MACHINE???? WE DO NOT NEED A SUCTION MACHINE!!! We need a pulse-oximeter, which measures Owens oxygen saturation through his pulse. I know it's difficult, but as someone who is supposed to deliver these products and "EDUCATE" the people who are receiving these items, you would think Dwayne would know what that is. He doesn't and there isn't one to be found.

Honking continues. Nick tells Dwayne, that he must move the van, there is a woman outside having a coniption. Dwayne goes outside. The line down our street is 6-8 cars long. Dwayne gets in the van and IT IS STUCK in the snow (Oh Dwayne, this would because you failed to park your van and chose to instead, shove it in an "area".) A few angered drivers get out and help Dwayne get his van moving. He parks and comes back inside and wants me to sign off on the equipment so he can "get going". I can't do that Dwayne. I am a lawyer. What kind of sense would it make for me to go and sign things that allow you to leave, when I have the wrong equipment. Hey, I have an idea. Dwayne, if you are supposed to deliver things at 4PM, when your company is open and these things can be addressed and recified, THEN DO IT. So I refuse to sign and Dwayne leaves anyway.

Why don't I want to get this man fired, you wonder? Me too. Me too. Anyway, it now takes the nurses another 45 minutes to get the pump working and only because its a new type of pump that they have not used often. I am glad they are there and also worried about what that means for Owen on his first night home with it, without oxygen monitoring.

But in the end, the pump works, the nurses leave (except the one staying the night), the house settles and I finally sit down with my cold chinese food at 9pm for dinner.

The End (of our random Wednesday night).

Random things...

O's surgery is moved to Monday the 27th, so please pray. We go in at 10:45 and it will be a few hours before he is out.

All three of my boys love to dance. Gavin break dances, Caleb does the bounce while waving his hands and Owen lays on his back, waves his arms, kicks both feet and shakes his head no. Its hysterical. When I left for work this morning, this is what they were doing to a song on the disney channel. I will attempt to catch it again and have the sense to videotape it for everyone's enjoyment.

There is a documentary being done about Arthrogryposis. Its called "The Sweetest Gift- Living with Arthrogryposis Multiplex Congenita". As you all know by now, Escobar is a form of Arthrogryposis. Here is the link:

http://www.amcdocumentary.org/


Please take a look. I am now friends with some of these people on facebook or by email and they are truly inspiring, as I know my little O will be.

Its finally here. Christmas is finally here! We have such fun things happening over the next few days! I will soon add the December pics to our picture site, so take a look sometime in the next week.

MERRY CHRISTMAS TO ALL!!! God Bless, be safe and happy!

Owen update, date changes and stuff

Just a quick update for those keeping track. Owen was supposed to have surgery yesterday 12/13 for testicle repair and his feeding tube. Due to a scary respiratory infection, we moved surgery to 12/28. This is better, if you ask me, because nursing starts on the day we come home and it will be nice to not to have to juggle the nurse and the holidays. The nurse will come from 8pm-8am for night feedings among other things, but will afford us the chance to sleep during all the surgeries coming.

Yes, nursing was approved.

Spinal cord surgery has been scheduled for January 20. The good news is that O's spinal cord, where its tethered does not have a fatty deposit, so the neuro-surgeon thinks that it won't re-tether. He said the ones that have issues with re-tethering are usually the ones with a fatty deposit and he has none. So hopefully it will be a smooth surgery and we don't have to ever do it again.

The neuro-surgeon has brought on appointments with the plastic surgeon who will close the wound and the urologist who needs to see how his system works now since the surgery is close to the base of the spinal cord where all your nerves that work the lower part of your body are.

Owen finally got his RSV shot, not that it prevented us from a respiratory infection, however, let's hope it prevented us from having a worse one.

Other than that, its the regular ortho, pulmonary and therapy appointments as usual.

Owen O is doing much better now and has gotten back to his happy little self. He is not eating right yet, but this whole respiratory infection has confirmed for us that a feeding tube over the next few months is necessary. He has lost weight over the week and refused to eat for the most part, drinking 1 ounce here and there. He refused bananas yesterday, with his lips sealed and shaking his head no. He never refuses bananas.

Our pulmonologist had a nebulizer delivered and that has been working well. He is on a low dose of steroids from now through surgery to make sure we don't have this issue again.

Oddly enough, Owen hates Amoxicillan. Who hates the pink medicine? Gavin and Caleb would drink it by choice if they could. But again, I am met with pursed lips and shaking head. Owen shaking his head no is very very cute. It doesn't help with the administration of needed antibiotics, but it is cute.


And that's all folks...for now.

Thank you....

It's a time of reflection for me. Christmas time is emotional for me because its always been such a happy time of year. Family is all around and everyone is thinking of each other, getting gifts for one another and sharing meals. I have so much to be thankful for this year. I cannot tell you how many people have reached out to us, near and far, some family, some friends, some strangers. People from high school, people from law school, people who have kids with similar disabilities or who don't. I cannot even stop myself from crying while I write this because I am just so overwhelmed by the good people in our lives. Thank you doesn't seem adequate. I am not sure there are any words that can accurately express my or our gratitude.

Not one kind act has been unnoticed by us. I am not sure if we expressed it at the time. Sometimes we are so involved in what is going on, that after we get through a procedure or a crazy day, I wondered, did I seem grateful enough. Or after a letter was written or an email sent, I wondered if I was appreciative enough. If not, I apologize. I am so thankful, so grateful, so appreciative.

Over the summer, my wonderful mother-in-law, not only dropped everything and came more than once (and cooked and cleaned and held babies), but called all of her sisters and set up weeks where they came, one sister a week to stay with us and just be another set of hands. They did laundry or cleaning or dinner or holding babies. It was always holding babies. Kate Sedey came, for what was one of my most fun weeks that summer. And fun was hard to come by. Ma and Joe, thank you for all your support. For dropping things, rescheduling things. For everything. And I know, if you were closer, you would be there every single day. Kate I know you would be as well.

My mom and dad, for coming to appointments, for sleeping over, for letting us nap. For handling appointments. For everything too.

Everyone has done too much for me to list. Really.

Al and Bri. For being us, when we couldn't be. For all of your time that you have given to us over the last 8 months. So we could nap, so we could leave the house, so we could take G somewhere. For taking G to movies or for sleepovers. For trying to make up for some of the attention he missed from us. For the meals, the relief, the karate trips (to both schools), the friendship. You guys have become our best friends. We cannot describe how much all of this has meant to us.

For all of you who have babysat or come to hold a baby, Carla, Markus, Maureen, Erika (for wine and baby holding). Thank you so much.

For those who lend an ear when we needed to cry or talk. For those at KIPP for understanding and for making things easier instead of harder.

For all the moms who reached out to me to tell me I am doing a good job, or to hang in there, it gets better. For those who walked me through his treatment. For those who said prayers, sent good thoughts, who crossed their fingers and toes.

This year has really opened our eyes to all of the support we have out there. Before now, we probably didn't need it, we never even had to consider needing it. As soon as we did though, you all came out of the woodwork and offered whatever you could to help and I am not sure we would have made it through this year without you.

So thank you. Thank you. Thank you. Thank you. For everything! For all listed here and for all thats not. Every single act of kindness, we appreciate.

It's beginning to look a lot like....

CHRISTMAS!!!!!!!!!!!!!!!!

Finally, Christmas-time has arrived! This is my most favorite time of year. For those who know me well, you know I start singing Christmas carols in October. I plan our annual Christmas tree cutting get together (except this year I notice attendence is suffering, ah hem, let's get it together people), I plan cookie baking, plan my office holiday party and have something doing every weekend.

And it's Gavin's birthday! Gavin Sedey was born December 2, 2004 at 8:13pm. He took his sweet time getting here and arrived like hell on wheels. When the nurses put him on the table he tried to push up on his arms. They said to me, "Oh, you are in trouble!" And I have been ever since. But what a wonderful gift my Gavin is. He is hysterical. Lately he says the funniest of things. He is 6 going on 36. For instance, he is going to marry a billionnaire, she is going to work and he is going to stay home, unless they have kids. Then he is making a job for himself. (Because who wants to take care of kids!) He is a trip. Over the last 6 years nick and I have watched him grow into a thoughtful, happy, energetic, smart, intuitive, resilient, loving and caring little boy and we are so proud to say that he is ours. So our December starts off with a very special celebration, this year in the form of a lego party. Happy birthday G, we just love you to pieces.

After G's party we cut down our tree. I love the whole ordeal of it. We go to a farm, tailgate with our family before boarding the big red tractor pulled hayride to the top of the hill where the big trees grow. Most of our family and friends find their tree in the first half hour, while our tree always hides from me until everyone is losing their patience and anxious to get out of the cold. I am sorry. Blame my tree!!! We go home and get the tree up and I spend lots of time piling the lights on while cursing under my breath, because it hurts for f*cks sake! Then we decorate and spend the next hour or so admiring our work from the couch. This year we will have to figure out how to hide the tree from the babies since Caleb has bypassed crawling and now pulls himself up and as of this morning was taking steps to the left and right depending on what he wanted to touch. So ideas on how to hide the tree from them are appreciated.

From there we are onto Christmas concerts both at church (Gavin is the little drummer boy) and at school. Holiday parties, NYC windows and the Rockefeller tree viewing and then last minute shopping.

Most of all, besides the lights, gift giving, wrapping paper, I just love seeing all my family over and over. It starts at Thanksgiving, which we got to spend in St. Louis this year with Nick's parents, Kate, Erik, Heidi and Dan and continues through Christmas. I love all the time we spend and all of the fun and laughs we have. We are so lucky to have an amazing family and lucky to keep adding to our family with such amazing people. For the last few years we have gotten to spend Christmas Eve with my new brother-in-laws family, hopefully starting a fun tradition of eating and drinking and being Merry with their family. My in-laws are coming to our house for Christmas this year and we are having dinner with my parents and sisters. It really is what makes this time so special.

It's the twins first Christmas. I cannot wait to see them stare at the tree, or attempt to eat wrapping paper.

This is the best time of year!

Appointments and Updates....

It was/is and will continue to be busy around here. I just want to write an update so all who want to know, can know what is going on with Sir Owen.

November 23, Owen has a spinal MRI. Just about everyone who treats him feels that this will reveal that his spinal cord is tethered. A tethered spinal cord is when the cord attaches to this tissue around it which anchors it and inhibits its ability to move up or down in the spinal canal as he moves and grows. Our first whole body MRI revealed that he had a "borderline" tether. Surgery will need to be done immediately (within a few weeks).

December 13, Owen has testicle surgery. We have done this before and hopefully if all goes well with intubation this time, we will be in and out of surgery in a few hours and settled in for our night of observation. The doctor will make three tiny incisions, put a scope through one, locate the testicle and push it down through one incision and pull it through the other. He will have 6-10 meltaway stitches and hopefully it will go as well as the first surgery.

We met with Dr. Campbell. Dr. Campbell took one look at Owens films, ordered a whole bunch more and told us that Owens spine is trying to torque to his right. So as it tries to turn, its shutting the ribs on the right side like a shutter. In addition, his lung on his left side which is on the concave side of his body is being compromised vertically. Dr. Campbell created the VEPTR, which I have wrote about before. VEPTR stands for Vertical Expandable Prosthetic Titanium Rib. Owen will need two, one for each side and a set of anchors on each side that give the prosthetics some extra strength. One of the prosthesis will apply pressure down on the spine pushing the spine back, as it tries to continue to turn. The other will open and spread his ribs creating room for the lung. The before and after x-rays that we saw were remarkable. Owen will be straighter as result of the surgery, although its not the goal of the surgery. The goal is to create space for the lungs to grow and for biology to work for itself without further intervention by us. Needless to say, this is big for Owen. In good ways and bad. It potentially saves his life and allows his lungs to grow and have the space they need. It also begins the next 12 or more years of expansion surgeries which happen every 6 months. Most of the risks are rare, but skin breakthrough seems to be inevitable. Surgery is tentatively scheduled for March 22 in at CHOP in Philly.

This has also pretty much guaranteed Owen will be getting a feeding tube. We have one more month of feeding him as we are and seeing what his weight gain is and then we will have to have one. Nick thinks I have made the feeding tube symbolic of all Owens problems. I think as his mom, one of my most important jobs in taking care of him has been to feed him and now I feel like I am being usurped.

It doesn't matter though because he needs it for surgery and that is the end of that. He needs it, he gets it. Now I just have to figure out what that means for us, the baby sitter and potentially a nurse, since I work.

Wednesday of this week, we are back to CHOP for pulmonology tests for the VEPTR. Soon after we will be scheduled for the Dynamic MRI and a CT scan so that the doc can look down O's spinal cord.

That's all I have for now.

For anyone who is interested, here is Dr. Campbell's testimony before the Senate Health Committee regarding the VEPTR. http://www.aap.org/advocacy/washing/Therapeutics/docs/campbell.pdf

Dear Caleb,

Dear Caleb,

Now on to you Twin B or Thing 2. Words cannot describe how happy you are! You wake up with a smile. You go down with a smile. You are so happy. It warms my heart to see you. Just about every time I look at you, you have a big, toothless grin for me. Your blue eyes sparkling. It is just pure joy to look at you. And, you look like mommy. Which is special to me.

You are an explorer. Since you have learned to move, you want to see everything. I say move because you are not quite crawling, yet, you make your way around an entire room, down the hall and can go just about anywhere you want. The only thing that stands in your way is your need to touch and taste everything that you pass. You scoot. Kind of like an army crawl. You find something to chew on and peek over at me, and give me this great big grin, like you are discovering the world. And you are.

You are determined. You want something, you see something and you figure out how to get it. You are resourceful.

You are funny. You have a sense of humor. You laugh at things. You laugh in the most adorable way. Its loud and giggly. I love it.

It's not easy being a twin and it's specifically not easy being a twin to someone who has disabilities. It may seem at times that we need to concentrate on Owen. We take Owen places and leave you home. I don't know what you think, but the way you look for your brother when he is gone, tells me that there is a connection there. I wonder if you will take care of him.

You kiss me. With your big open mouth and you know what you are doing. I love it, even with all the spit!

Every night while I rock you to sleep, you reach up and try to touch my hair. Then after I lay you in your bed, while your eyes are closed, you reach back for your blanket, grab a hold of it and snuggle it to you. I wish you would stay this little forever.

You are already smart and mischevious. I already know that you will be the most trouble of all when you are a teenager. I see the head-strong, determination and charming smile and know that we are in trouble! I can just see the smile you will give me when you are getting in trouble later in life.

You are so chubby. You have rolls on your thighs, rolls on your arms, chins, a roll by your ankles and they could not be more adorable.

You have no teeth yet and you don't say ma ma or da da. You do say things. Mostly "Agoo." I am not sure what it means but you are absolutely delighted when you say it and so am I.

You love, love, love to eat. You say "mmmmm, mmmm" when you want food and like almost everything. You aren't fond of chicken. Neither am I. Grammy taught you how to say "Ahhh" and open your mouth when you want another bite. You open your mouth wide and scream "AAAAAA" with this high pitch squeal. It's hysterical.

I cannot wait to continue to know more of you. I can't wait until you can tell me all the reasons for those smiles. I love you Caleb.

Love, Mommy

Dear Owen,

Dear Owen,

Since you are Twin A or Thing 1, I figured I would write to you first. I write a blog and I write a lot about my boys and probably most often you. One day I will print all of my pages and put them in a book for all my boys to see. From time to time, (or all the time) I wish I could freeze time and capture moments forever. You will notice I take a lot of pictures of you guys, well that is one of my attempts to do that. This blog is the other. You and Caleb are so cute and lately I see so much of your personality forming and shining through. I just wanted to take a minute to write to you and tell you all about yourself now.

You are so handsome. You look so much like your daddy, but with darker hair and dark eyes. Your eyes are so special. From the moment I looked in them, I knew that you were amazing. You were just born and I had no idea what was going on, but I looked at you and it was almost as if you were telling me, it will be alright. The NICU nurses saw it too. Your whole family did. So many people told me right off the bat that you were wise, they could tell by looking in your eyes.

You are so forgiving and good natured. Each day you are tested. PT hurts, OT hurts. Doctors poke, prod and manipulate you. What you endure is not pleasant. Yet, you work hard every day. You take all they give and trust me baby, its necessary and for your own good, but its not easy. Yet, you find a way to smile after. To look at their faces and smile, as if to say, it's OK. I am so proud of you.

You have grown inquisitive or as I like to say "nosy". You want to explore. To touch, to grab. I can't explain how cute it is. All I can tell you is that watching you pull my hair, reach for a toy, play with a book is the most rewarding thing I have ever seen. When you were born you could not open your hands. I wasn't sure we would get even this far and after seven months, I now know how much farther we will go.

You love to laugh. It's at the silliest of things. Last week Gavin was playing with you and being silly and slapping his own face and you burst out laughing and giggled for so long. Then there was the giraffe at therapy. You found it hysterical! (This week, you cried hysterically at it, for unknown reasons). And then the colorful bear. Watching you laugh makes laugh. It makes me so happy.

Right now you want to move. I don't know what you must think about your limitations. I see you watching Caleb. I know you want to crawl. You have mastered rolling. I wonder often how you will get around. I used to wonder if. But I know you will find a way. You are determined. You have learned to make yourself heard. You used to cry softly. Now you wail as loud as you can and you talk just loudly.

You talk. Ma, ma, da, da, da, da. Lots more das than mas. But I will take it! And you have two teeth. You squeal. You make all types of noises and true to both sides of your family, you find yourself funny.

Owen Sedey, you are a remarkable baby and I cannot wait to get to know you better. I love you.
Mommy

The game changer

Owen is my game changer and my eye opener to how some people, including myself, live with children with special needs, or with ill children or even adults in similar situations for that matter. It changes everything. I once took for granted that all I had to worry about was whether I could pay my phone bill on time. I worried about all the "normal" things. Bills, work deadlines, keeping the house, so to speak. I thought I understood, being a mom and being a working mom, what stress was. I did not. My life was not stressful before. Even if I behaved as though it was because I had to work and juggle one child and deal with the house. I had no idea.

Now I worry about things like anesthesia. I worry about wheelchair access to our home. I worry about surgery and whether or not Owen will walk. I worry about his lungs. He has a runny nose right now with some congestion. If this moves into his chest, it could be a problem. I worry about medical bills and whether or not our insurance will cover it. I worry about medical appointments and how to fit them into my life as a working woman. I worry about making Owen gain weight.

And I worry about the normal things. The regular bills, work deadlines, if we have enough money for things. I worry about work and medical appointments. I worry about Caleb. I worry about Gavin. I just worry.

Part of that is my nature, the part that allowed me to worry about things like "keeping the house." The other part is now a real reality. I was reading my news feed on facebook. Every other post was from someone who I am now friends with because they have a special needs child with a condition similar to Owens. Between their updates there would be updates like "I can't decide what to have for lunch" or "FML, work sucks." I am not knocking those people. Work sucks and you don't know what to eat. Understandable situations. But now, what I read between those posts now are things about trach tubes, spine appointments, casts, and respiratory issues. And I realize that this was a game changer. Life went from 'I don't know what to cook for dinner' to casts, respiratory issues, and spine appointments. Not just for them, but for me too. I am one of them now. Owen is. We are as a family.

I am new to this. They have years under their belts. As I cried this week about Owen having to be put under and deal with all my fears regarding that and the "what if something goes wrong...", I realized that they have been through this a million times already. I felt sick the other day as we are discussing our upcoming surgeries and the order in which we will have them. We talk about Owens little body as if its a project or a puzzle to be done. I cried for Owen and all that he will go through. And their kids have already gone through it. The surgeries, the hospital stays, the recovery.

Life is different now. Seems so silly to have been such a worrier before. Seems like such a waste of time.

Events of the week...

Owen is up 1 1/2 pounds! Yay!!! That pound and a half was hard work mind you! He had to eat butter, olive oil, meat-3x per day, rice cereal at every feeding, have more formula for each ounce of water, eat ice cream, whipped cream and pumpkin pie. Whoo hoo! Now we just have to keep this (horrendous, but yummy) diet up until he is a chunker like his little brother Caleb. I could not be more thrilled.

We have our MRI this coming week. Please send good vibes, prayers, thoughts, whatever you do, please. Anesthesia makes me nervous. Its one of the drawbacks of my profession. I know what can potentially go wrong. So I worry, have anxiety and earn myself a few gray hairs over it. (Ha, no you cannot tell, because I dye it.) We will be at CHOP in the PICU overnight and a lot of people say there is no better place to be. I am trying to find comfort in that.

As you all know, its Halloween. The babies are being Thing 1 and Thing 2 and Gavin is being the Cat in the Hat. Its going to be precious. As soon as I have pictures, I will post them on shutterfly (link can be found to the right of this post).

Aunt Patty is here visiting and she is meeting the babies for the first time. It should be a fun weekend.

Week one of dieting was not fun. I was cranky a lot and fell off the wagon (not the cheese wagon, the cookie wagon). Why is it that on my first diet week, everyone in my office bought cookies? So I had some. And then I felt bad. I did good though for the most part. Ate my lettuce. Are more lettuce. Ate even more lettuce and realized, I am hungry. So, I ate lettuce and other things, like soup or whole wheat pasta covered in veggies. Here are some things I learned this week: 1) I do not need 2 cups of pasta, like I thought. I can eat 1 cup of whole wheat pasta covered in my peppers, onions, spinach and olives and its more than enough food, 2) If you eat more than one 100 calorie pack at a time, it defeats the purpose, so needless to say, I am done with those, 3) A skinny latte with sugar free caramel syrup goes far at 3pm, 4) I can live without cheese. I may not like it, but I can do it, and lastly, 5) I don't need to sautee things in half a cup of olive oil. 2 teaspoons is plenty if you mix it well.

Happy Halloween!!!!

Stop that train and farewell queso, I loved you so.

All we have done is eat in the last few weeks. We have been to family functions, friends homes, parties, and gatherings. We have hosted one or two of these and all we do is eat. For example, Friday night we went to a Halloween party. We ate. Saturday, we went to Madisons 7th birthday party. Again more eating. Yesterday, we went my cousins home with my sisters and my cousins and all the significant others. We ate and ate and ate. In the last three days, I personally can say, I have eaten brownies, mozzarella sticks, cookies, pie, cake, cheese, cheese, cheese, dip, crackers, bread, more cheese. Hot cheese, cold cheese. Throw in some olives, roasted peppers and a few veggies for good measure and I am stuffed. Now add to that the beer, wine and champagne mixers that were oh so delicious, and well I feel gluttonous. I feel disgusting. I don't usually tell anyone when I am going on a "diet". Failure looms too close. I don't want to show up at family parties or the holidays and have people looking at my plate trying to determine if I have fallen off the wagon. I don't want to have to explain that I ate salad all week, I swear I did, so I am entitled to this full plate of cookies! But I woke up yesterday morning, I looked down at a belly that I have not had in 12 years, put on pants that are a size that I have not worn in 12 years and I almost lost my shit. I feel horrendous. Yes, yes, I know, I just had twins, and a c-section, and I have no time, and I have this whole new life on my hands, and.... I get it. I currently have every excuse in the book to drown my sorrows in food. And I have been, I assure you. But this life isn't getting any different anytime soon, so I have to stop now or else this will get out of control.

I have never been small and my struggles with my weight have been life long. When I was younger I weighed a lot. When I was in college, I weighed one hundred pounds less than I did at 17. It took years to lose 100 lbs. I had to change what I ate, I had to drink water for a living. I had to give up cheese. If you don't understand my love affair with cheese, please see the above paragraph and what I ate for the last 3 days. Eventually, I had to exercise. And it wasn't fun, but I remember thinking that once I got used to it, it wasn't the hardest thing I had ever done. Now one happy relationship, two kids, control over my own fridge and having such a passion for cooking has left me watching the scale climb back up that steep mountain.

Its time for a change. And maybe the blog will help me. Perhaps telling all of you that I am going to make some food changes and that I am going stop this train before it becomes a train wreck will help me stay motivated. I need motivation. We are going into the holiday season now. It starts with a milky way on October 31 and it ends in gravy smothered mashed potatoes in December. I need to get control.

If you have ideas (short of "stop eating" because we all know that isn't going to work) please feel free to comment. I am sadly giving up cheese for the most part. With the exception of feta, parmesan and cottage cheese, I am bidding adieu. I realize that using mozzarella as a way to cure my woes, is not only not working, but its making me more miserable.

Good-bye mozzarella, my salty, melty, stringy friend. One day I will know how to consume you in moderation. Until then, I must never taste you.

Good-bye American cheese. You are the only grilled cheese I love. I will miss our hot buttery sandwiches on picnic night. It will never be the same.

Good-bye provolone (picante of course), you, some roasted peppers, shredded lettuce and tomato on a roll covered in italian dressing. Perfection. However, I no longer can do this. What you have single handedly done to my ass, is just wrong.

Anyway, besides giving up the cheese, I am living on lettuce. Not really, but if I can eat a big, but interesting salad every day for lunch with a small cup of some sort of bean or vegetable soup, then I will have had a healthy and satisfying lunch. By interesting, I do not mean covered in bacon bits and ranch, I mean veggies and nuts and I will make my own dressing devoid of mayonnaise. Yogurt and fruit for breakfast or Kashi cereal with milk and berries. And hello splenda and fat free half and half.

Dinners are my real issue. I am a vegetarian. Nick is not, although he is willing to eat very little meat, he does need chicken and fish and so do the babies. I need vegetarian friendly, low fat, meat-eater satisfying meals that can be done quickly! Ha, I think I just asked for the impossible! If anyone has any ideas, please let me know. I am willing to try anything.

In addition, I am working on my "party plan". A way to fill my plate with the healthy stuff and not go back for the cheese, dips and desserts. A plan to take just one and have that be satisfying. Again, tips and advice are welcome.

I am done for now, but I will be back to update my life with lettuce!

October Updates...

I figure I better update, before its November and I have lost sight of October. (See my previous entry). Anyway, so this month we have had our meeting with the nutritionist, a barium swallow test, a new dietitian (I will explain why we have a nutritionist and a dietitian shortly), a pre-anesthesia appointment, a meeting with the orthopedist and an upcoming pulmonology meeting.

Basically, the nutritionist and I met a couple of times and she suggested that my child is hungry and that I am not feeding him enough. I brought him to her office when he was hungry on purpose. I timed his feeding so that he would take his bottle in front of her so that she could observe his eating. I journaled his food and bottle intake for more than a week. I charted other Escobar kids weight gains from birth to 2. And stupid me, apparently. She took his hunger to mean that I was not feeding him enough, that I am clearly not giving him what he needs and explained that since he is so hungry he is expending energy being hungry which is burning calories. In addition, she explained that feeding tubes are easier and could not understand my resistance to such an idea. Where to begin with this woman. First of all, Owen is not hungry. I am not even going to explain how much he eats because I refuse to feel like I have to explain myself here. He eats, he is not hungry. End of story. She refused to listen to me about how he gets exercise from therapy, he cries the entire time and he has Escobar, which all could contribute to his lack of weight gain. She put my chart in a folder and gave me back my food journal. No other consideration was given to reason. The answer has to be that I don't feed him enough. When I suggested an increase in his formula to water ratio, she said that wasn't going to help. When I suggested duocal, a supplement that bumps up the calories, she said that wouldn't help. And when I explained to her my feelings on feeding tubes and why I did not think that was the best option, she said I seemed a little excitable. I smiled and left. We no longer have appointments with her. The last thing I need are doctors that are making me excited.

The only reasonable thing she did do was order a swallow test for Owen. As I suspected, Owen swallows fine. I may seem a bit "know it all" here, but honestly, Owen is my job right now. I take knowing his situation so seriously that I do know A LOT. I do not know it all. However, when you are unwilling to do the research, or even listen to what I see and do every day with this child, its clear, I know more than you and we will not be continuing our relationship.

In the meantime, Early Intervention cleared us for a dietitian. She came over to the house and you should just hear the things that Owen can eat. Butter or olive oil with every meal. Condensed milk, ice cream, heavy cream, avocado, whipped cream. He may have mashed potatoes with cream and butter. He has a diet from heaven! Seriously, its felt very unnatural to feed him this way and I asked her if I could potentially be setting him up for a heart attack later. She assured me that I wasn't and that babies need much more fat and our goal is to get them to double and triple their weight in the first year. So I relaxed and now Owen is smacking his lips at his rice cereal, chicken, and sweet potatoes topped with melted butter. And he was weighed yesterday, between his 6 month check up and now he has gained 13 ounces, so I am suspecting by next weeks pediatrician appointment, he will have gained a pound!

As for orthopedics, his foot is recurring and that's not good. She suspects its the tethered spine. A long time ago (June) when we had a full-body MRI for Owen, they said he has a borderline tether. In light of the way his foot keeps recurring, she is pretty sure its tethered and it will have to be released in order to continue to fix his feet and for them to remain corrected. This will also have to be done prior to the VEPTR surgery which they think will happen in December of next year. We will get confirmation of the spine at the MRI in Philly, at CHOP on 11/2.

And lastly, we had our pre-anesthesia appointment yesterday for the MRI. Owen has to go under general anesthesia for the MRI and because of the apnea, he will have to be intubated in the OR, they will bring him to the MRI. He will have the study. They will bring him back to the PICU and then we will stay overnight for observation. They have to watch the breathing because of the lungs. So another overnight in Philly. I hate that we have to be away from Gavin and Caleb, but better safe than sorry.

Ok, that's all I got for now. More updates to come!

Trying to find balance in the craziness...

This first year of being a special needs mom is, for lack of a better word, crazy. Add twins to the mix and its insane. Add one well-meaning, high-energy, bright, attention-requiring 5 year old and I am thinking we have reached certifiable. Now add lawyer, wife, sister, daughter, friend and dog owner and I am pretty sure I can hear the sirens of the truck coming to take me off to the looney bin. One straight-jacket please. I welcome some time in a padded room! Seriously.

I have spent a lot of time lately trying to figure out how to balance all of these things and try to find some time for myself. I don't do anything for me anymore. Not a pedicure, not walking, not Saturday afternoon naps. I don't have time and when I do, there are other things that are more important. And yes, I could probably skip the cleaning one Saturday, but when Caleb is chewing on a mouthful of dog hair because I did not clean, someone is going to look at me like I am a bad mother and I would prefer not to deal with that. Not to mention, I am short on patience, so when that disapproving look crosses that persons face, I am bound to go off.

So back to balance. Seeing as I have never been so busy in my life, I would like to have some of this. Time management at its best. I hate to reduce life to appointments in my calendar, but it seems its necessary. That's how I make it to all of our appointments, my court appearances, our social engagements. So now I need to figure out how to pencil in some "me" time and since I am feeling self-indulgent, some "Nick and Sara" time too. Our social worker agrees. She has even requested that Nick and I receive "respit" from Early Intervention. Time where they pay someone to watch our children so that we can get a break and get out of the house. We just need to find the person. The brave soul who wants to watch all three of them, for whatever hourly wage the county is paying.

Its so easy to get lost in this new life. To let go of everything that I like to do and want to do because I am needed by my kids, my disabled son, my husband, my job. So I think, I will pencil me in. And when we find out more about the "respit" situation, I will pencil us in. I will make and keep appointments for me and us to have time to do some of the things that we need to do for ourselves. I think its impossible to have balance otherwise and to feel like a human.

My babies are growing...

at an alarming rate. They are 6 months old now (6mo, 1wk) and its going too fast. Maybe I am panicking because these are quite possibly my last children. Not definitely, but after the last few years, its safe to say they are my last for a good while. And they are rushing things! I have been looking at them over the last few days and they are big. Not only are they big, but they are doing stuff. Just minutes ago, they would curl up on my chest and nap. They were warm and sweet and exhaustion took over their little bodies and they would sleep for hours on me. Now, we fight to get them to sleep. We rock, bop, dip and twist them into sleep. We negotiate. We take little hands out of little mouths and put pacifiers in to do just that, pacify them. And they no longer sit still. Even Owen (which honestly is good news, but still, can't someone stay a baby?). If I left Caleb on any piece of furniture, it would be gross negligence on my part. And just this morning, I took for granted that I could leave Owen and there he was trying to roll himself off the couch. They want to go somewhere. I want them to stay still. Or for time to stay still. Soon their toothless grins will be littered with little white teeth sprouting up. I love them without teeth. Never again will you find a toothless grin so endearing. The next time you see it on a person, they are generally fairly old and its not so cute. Same for drool. And I realize that this all makes me sad. Gavin is a couple months shy of 6 and it snuck up on me. How dare he grow up? And why is the natural progression of things such that children become less affectionate with time? Gavin loves me to death, but is annoyed when I want to hug for more than a split second. Although, this morning and some mornings when he crawls in bed with me after his dad gets up to shower, I pretend to sleep and he snuggles up like he is little and plays with my hair. If he knew I was awake, he wouldn't do it or would ask me to get up and get him something, so this works out well.

I love all the next stages that the babies will go through. I don't mean to say that I don't like teeth, or eating cheerios off of a high chair tray or those first steps. I love those too. But I wish time would take its time. I wish that I could guarantee all of these memories or moments would be imprinted on my brain.

I remember wishing I was older all my life. I couldn't wait to be a big kid and now I am watching my own kids feel that way. I hear my parents telling me to slow down, enjoy where you are now and I pressed on. I wish I could tell my boys that in hindsight, I wish I slowed down. Not for me, but for my parents who were probably wishing it wasn't going so fast.

September updates...

I have not wrote in a couple of weeks because I have been working on an entry about the weddings and how could I possibly write without mentioning the weddings, as they were two of the biggest things that happened this year for us. However, I can't quite get out what I want to say, so I figured I would update and when I am finished with my recap, I will post it. So stay tuned.

In life other than the weddings, things have seemed pretty hectic. I suppose they are just as hectic as usual, but with school starting and Nick and I both working and the amount of therapies kicked up a notch, its just nuts.

We went for our sleep study last week in Philly. Sleep is pretty much the last thing that anyone got, however, if you are interested, this is what a sleep study is like. Remember those really old, black and white movies, where they are preparing someone for a lobotomy with the tin cap that's connected to a bunch of wires? Well its similar looking to that. We arrived in Philly to CHOP and went up to the sleep lab. Sleep lab translates to hospital room that is audio and video wired with infrared so that in the pitch black they can watch us all night. Ever been paranoid about what you look like when you are sleeping? I now have. (Ever felt the need to clarify just who it was that passed gas because it wasn't you and you know they are listening??? Me too.) Anyway, they attached around 40 nodes to Owen, on his head, eyebrows, neck, chin, chest, and legs. They put the nose tubes in, they have the heart rate monitors on. They wrap his entire head and chin in gauze until he looks like a head trauma patient and then they say, go to sleep. Ha. Owen managed to sleep for 3 hours that night and Nick and I, maybe 2 hours. Once Owen realized that he was going to hemmed up like this for the long haul, he said "Game on." The game being, I am not going to sleep and neither are you. As you can imagine around 3-4am after being up most of the night and being severely frustrated, Nick and I actually tried to catch an attitude with each other in hushed tones and clenched teeth. We can laugh about it now. But miraculously, they swear they got 5 hours worth of sleep from Owen (Yeah, maybe in 10 minute incremets.) And we can be thrilled that its over and under our belt.

Yesterday we had our pediatrician appointment. Caleb weighs in at 16lbs 12oz and Owen at 11lbs and 7 oz. Owen is up 10 ounces. Still this is not enough. I am just so frustrated by this. I work on Owen eating constantly. This weekend, I got him to take a 6 ounce bottle. He loves eating cereal and fruits and veggies. His favs are bananas, sweet potatoes and turkey. He hates peas and chicken. I do this like its my job and it is. I (and Nick) feed both babies all day. I mean ALL DAY. So, to hear that we are headed for a feeding tube, is upsetting. I am sure for those of you who read this, whose children have feeding tubes, I am being dramatic. But I just do not want one more additional thing to add to my plate. So, in my protest, we are now seeing the nutritionist who is looking into special formulas and we are having a barium swallow test done. I will keep you updated on the results of all.

In other news, Gavin loves first grade and this week, I am going to meet the teacher night and I cannot wait to see his class and check everything out. I love that he is so close to home and that he is home by 3. It really does make a difference. He has time to wind down, play and then when I get home, we are ready for homework, dinner, shower and cartoons.

Caleb is also great. He is funny. He has a sense of humor already and he loves to smile. It lights up my day. He is a chubster and I love to pretend to eat his thighs and he giggles away. Owen giggles too. I love hearing it. And we are big into raspberries lately. Playing with either one of them usually means you are getting spit on.

This weekend we are going to take G to his first karate class and on Sunday we are going apple picking. I cannot wait to take pictures in the pumpkin patch!

A day of appointments...

Today we had a bunch of appointments. Its going to be this way for a while. I have Mondays off to deal with all of Owens things and today was a full day. First we had the cardiologist. We needed clearance for the real-time MRI because it requires general anesthesia. We had an EKG and a Echo and everything is great. His heart is pushed over a bit, but functionally, its fine. So we have our clearance. I have learned that nothing inside of Owen is exactly where yours or mine is, so it no longer bothers me to hear, but initially, when I would hear that his organs or bones were in a different place than they should be, it really bothered me.

We then had our ortho appointment and of course, his foot is trying to regress. She wants to start casting him again next week, but if we can stretch him (just for a minimum of an hour a day and three if we can swing it) then maybe we can keep the brace on. Ha. We stretch Owen, but an hour a day is quite hard and three is damn near impossible. I am wondering when I have an hour a day. Yeah, I got an hour a day, its just on the train on my way to work. I am not sure thats going to work. Needless to say, Nick and I will each find a half hour and get the hour in.

We had all our therapies today. At OT we got new elbow braces and a new knee brace for the leg thats been casted. We had a great therapy session and when we got home we had our EI therapy and our therapist stretched his foot for an hour.

At 6:30, the counselor or social worker came and it was my idea to have her, but we like her and I think she will help us with Gavin. Plus, I don't think it will hurt to have someone to chat with given the whole situation.

I spend so much time telling everyone how okay everything is and generally it is (see?) however, its also really really hard. Its not always okay. Its crazy sometimes and not just because of Owen, because we have twins, because we have three kids, because we have one disabled child, because its just really hard. Its hard for any family who has a baby or is adding a baby to their family. Its harder when its twins. Its even harder when one is disabled. Needless to say, I think the counselling aspect of things is a good idea.

In other news, Gavin started first grade and so far loves it. Tonight was our first night of homework and I remembered how much I hate kid homework. Why do they get homework so early in life? Is it for the parents? Last I checked, I completely understood the role of the letter "c", not only in my life, but in life in general. Anyway, the homework is done and tomorrow for the first time ever, Gavin will buy lunch. He is so excited about getting to choose chocolate milk over plain milk. Ah, the simple things.

Caleb is one minute away from crawling. I beg him daily to just stay immobile for a few more months, but he is trying his hardest not to listen. That child has the nerve to get on his hands and knees and rock forward and backward. And if that does not get him anywhere (and I promise it does) he uses his hands to pull and his knees and feet to push until he has made his way across a bed and now the floor. So, soon enough I will be baby-proofing, which to me means throwing out a bunch of crap so we can move all the valuable crap to where that was. Again, I beg him daily to hold off on this for obvious reasons.

And its Nicks birthday today! He is 32. Since it was such a crazy doctor day and he worked, we celebrated yesterday. I made fish tacos (his fav), mole chicken tacos and shredded beef tacos with all the fixins and then plum cake and mexican hot chocolate cupcakes from scratch. We had a few people over and drank a few beers and celebrated. It was a good time.


Okay, okay, enough already! Talk soon.

The first day of first grade...

I could not help but feel excited when Gavin woke up for school this morning. He was excited and almost different. Maybe bigger. He came down his loft bed in his new "night before the first day of school" pajamas and he seemed all grown up. He asked how long he had to wait before we left. An hour. He did not want to watch cartoons. He wanted to eat breakfast, wash up and play with his brothers. We had picked his clothes out last night and he was ready. He has his new bookbag packed and his lunch in order. We discussed grown up things, like whether he would need a water bottle so he wouldn't be thirsty all day and how many flash cards he had to practice when he got home today. Only 6 words today, which apparently is okay, because if it were "like twenty, I would be mad." Again, he seemed grown up.

We walked hand-in-hand to his school and he was assessing the playground from afar. Many days over the summer he asked me if he was allowed to play there yet. And for the first time, today I could say yes. We entered the building and now I had first day jitters, for its my first day too. My first day for my boy being in first grade. My first day of leaving him at a new school. My first day for leaving him in public school. I went to public schools all my life. They seemed normal. Not huge, not daunting, not anything but the norm. However, Gavin has attended Catholic school for the last two and half years. One pre-K class, one kindergarten, one of every grade. So this seemed huge to me. There were just so many kids.

We found our way to the playground which was crawling with kids of all ages and he wouldn't let me go. I think he wanted me to play on the jungle gym too. But eventually he left my side in favor of the rock climbing apparatus. He never took his eyes off of me. I searched the place for a familiar face and I could not find one. I felt myself tearing up. Its too big. There are so many kids. What if he doesn't make friends, what if he feels lost. I imagine, he will. When you are as cute as Gavin and you have been in a tiny school with one of each grade, there is not a day where the 6th, 7th and 8th grade girls are not fawning over you. Now there are 6 first grade classes, you are bigger and you have started loosing teeth. Needless to say, its going to be a little different.

Eventually, I noticed people were starting to wander to the four corners of the playground. Thankfully a woman walked up to me and said, "Uh-oh, you look lost." I laughed and asked where Ms. Nasti was (yes, that is her name) and was pointed in the right direction. Gavin and I both had sweaty palms (I'd like to say his was from nerves and mine was from holding his hand, but I would probably be lying) as I brought him to line up with his class. I looked around one more time and saw a neighbor and then another, and thought to myself, now we are part of our community. I kissed my baby boy, who is getting all grown up and walked out of the playground, hoping for him that the first day of first grade is an amazing one.

TGIF and a few updates...

Really. Thank God its Friday. The weeks are going quite fast. My babies are 5 months old and my big boy is literally a week and a half from going into 1st grade. Not only that, but my sister-in-law gets married in one week!!!! And my sister gets married in three!!! So so so excited about the weddings,seeing family and friends and partying!!!!

This week we tentatively scheduled our sleep study at CHOP for September 23-24. I say tentatively because Dr. Campbell is out of the country for most of September, so we are waiting to see if he can see us on the 24th. Otherwise, if there is a better date for him, we will move it.

Owen has gained a little more weight. He is 10lbs, 13.7ozs. I am quite proud of him, although our docs are not all that thrilled and they want us to see a nutritionist. There was mention of a G tube but I am going to figure that was a mistake made when doctors were consulting with one another, because he is not having a G tube. He eats. A lot. He finished his bottles. He loves fruit and cereal and dislikes vegetables, like all children. Getting food down his throat is not the problem. Its getting his body to gain weight from the food that seems to be an issue. I am not seeing how a feeding tube will help that at all. I am not worried about it, I am not discussing it. Its just not happening and thats the end of that.

Other than that, we had our feeding/speech evaluation for EI. It went well. Not surprisingly, he has no speech delay. At this age, he isn't expected to do much and the very little he is expected to do (i.e. gutteral sounds) he is an expert at! Feeding is another issue, but again, it has nothing to do with getting the food down his throat. Its all about the tight musculature in his face and how he needs work on those muscles. We will get feeding therapy once a week. OT should be starting next week sometime and then we will have all of our therapy ducks in a row.

All in all, its been an eventful August and I am looking forward to September and all these family events and also getting into the routine of school and the babies and figuring out an action plan for Owen. I will keep you posted!