Today I spoke with the geneticist and its been confirmed that Owen has Escobar. I also just was made aware that today is the first annual Arthrogryposis Awareness Day.
With respect to the Escobar, I just knew the tests would come back positive. After reading the symptoms of some of the kids I have come across with Escobar, Owen has just about every one of the symptoms.
Nick and I have an appointment with the geneticist on Friday to be tested to see about who is a carrier. We should also get some more information which I will report on here when I have a chance.
I am grateful to know what it is and at the same time, it doesn't really matter. It doesn't change what we are doing now or what we will do in the near future to help his body.
Early intervention has begun and we are doubling up on therapies now, both at HJD and at home. They are working on Owens neck and attempting to release his shoulders and ribs. Imagine your shoulders are hunched really high, that is what Owens feel like. Now imagine your ribs followed your shoulders and the opening of your ribs is up in your chest area and you will know what Owens feel like. The therapists feel like with muscle releasing or stretching and/or massaging those areas, we may be able to move these things down a bit.
Aside from all that, both babies are cooing like crazy and smiling. Owen has dimples when he smiles really big and Caleb does not stop trying to talk. I have a sneaking suspision that they are starting to teethe because they are eating their hands, whining and drooling a lot. We shall see if I am right soon enough.
Gavin is feeling better. This was a doozy of a virus! Poor baby. His tonsils were as big as golf balls. I imagine they will want to take his tonsils sooner than later and if it saves him a lifetime of strep (like I had) then hopefully it will be worth it.
Nick is home for the next 5 days! I am so happy. We are venturing out to the pool tomorrow and then to my parents for a couple of days. I am looking forward to having him around and for all of us to hang out.
I am also really looking forward to the farmers market this weekend. I really into trying to buy more locally grown food.
I will keep you posted about what the geneticist says!
Wednesday, June 30, 2010
Tuesday, June 29, 2010
Traveling with twins and one very active 5 year old...
This is a very long story and if you are wondering, yes, we are crazy. I thought it, the people at the airport thought it and its now been confirmed. We took the twins on a airplane. And not one airplane mind you, they have now officially been on 4. But allow me to begin at the beginning and not get too far ahead of myself.
After much thought and discussion (and a little convincing from Grandma Mary Anne) we decided to take a trip to St. Louis. It was hard for me to drop therapy for a few days and doctors appointments (yes, I am being serious) because I did not want Owen to miss treatment. I thought and thought and the idea of a break for all of us seemed like a good idea. Not to mention, we aren't going on vacation this year and Nick had not been home in 2 years and I knew Mary Anne and Joe would love showing off their new grand babies. So off we went.
Tuesday night of last week we arrive at LaGuardia Airport. We have a bag for me, a bag for G, a bag for Nick, two carriers, two car seats, two car seat bases, one double snap and go, one diaper bag, one breast pump bag, one cooler of milk and one bag for the the babies, Nicks book bag and my purse. And I packed light! Thank God for curbside check in. We check three bags at the bargain rate of $25 per bag and move into the security. We are a freak show. We literally have about 12 of those bins lined up with crap in them and we each have to hold a baby as we go through the metal detectors. Their car seats and stroller must go through on the coveyor. Its just nuts. But we make it through with a little sweat and some apologies to the waiting passengers and we move into the gate area. Its about 7pm and our flight leaves at 8:45pm. We grab dinner and find a corner we can take over. We unpack the babies and we wait to board our 3 hour direct flight to St. Louis. I stupidly think to myself, "wow, we are almost through this" and I begin to relax.
All of a sudden, the sign in front of the gate says we are delayed. First an hour, then two, then two and a half. People are grumbling and there is an announcement about delays in other states which caused our plane to be late coming into NY. A further announcement about a half hour later tells us that the flight has been cancelled. The crew has been on the plane for more hours than they are allowed so they cannot turn around and fly to St. Louis. Sorry for ya. The crowd goes wild.
We sit and watch and Nick sneaks off to speak to an AA rep at another desk. Its about 10:30 pm at this point. He is told by the woman to hang out because they are attemmpting to find another flight crew. In the meantime, they are announcing over and over that they cannot control weather and getting upset isn't helping anyone.
At approximately 11:30 they announce that they have found a crew and the flight is on! Yay. Everyone settles into their seats at the gate and I set off in search of a plug so that I may pump. Do you know that there is not one plug in the bathrooms that work? I eventually end up in the space behind the desk at a nearby gate where they keep things like the wheelchairs. I am informed that in 5 minutes a plane will be unloading and that everyone will be walking by me. Have you ever tried to pump breast milk under such pressure? Its not a slow process, nor is it one that you would like to share with a plane full of people, so I do the best I can. But its not much milk and I am starting to worry that I will run out of food for these two.
At 12:40, they announce that our flight has been cancelled. A flight attendant called in sick. I am sitting there thinking about how stupid the person is who just told this crowd that that is why we are not leaving. Lie. Say weather. Say anything. But don't tell a crowd that you have already angered that has been sitting in the airport all night that we cannot leave because a flight attendant called in sick. For the love of God, I will hand out the damn sodas.
We go home. They aren't giving tickets out or vouchers. They are telling you to call a number to complain. There is nothing they can do so they say. We are rebooked the following day for a flight that will layover in Chicago. We are due to leave at 9:55am and arrive in St. Louis via Chicago at 2:35pm.
The following morning, we all get up and get ready again. The few things we had to unload from the car are packed back up and we go back to LaGuardia. We have to go through security again. I want to cry. We make it to the gate and we should be boarding shortly, but no, of course not. We are delayed due to weather in Chicago. We both attempt to breathe and keep our heads about us, so we grab coffee and breakfast and settle in. And one hour later, they announce we will be boarding! We pack up all the crap and go board the plane. We undo the carriage, the car seats, while holding the babies and carrying 5 bags each. We get on the plane and get settled. Gavin has been great this whole time. He has been keeping himself busy and being such a trooper with all the delays. The flight attendant takes him up to meet the pilot. He gets an AA sticker and a card all about the plane we are on. We buckle our seat belts. The captain gets on the speaker and we have been delayed...two hours. Then five minutes later, our flight has been cancelled. Get your bags and get off.
I am wondering if this is the chain of events that will send me over the edge.
Now, I have had enough of American Airlines. I do not ever want to fly with them again. My stroller is stuck on the plane. Nick is on the line holding Owen to talk to one of these idiots and I am standing on the side of the desk holding Caleb. Gavin is talking to anyone and everyone. The gate is chaos again. I finally get someones attention to ask when I can have my car seats and stroller. The lady feels bad for me, so she gets the pilots to get them off the plane and she begins to try to put us on another flight. Shock and awe, there is no more until the following morning. I know if we go home, we will not be going to St. Louis. I cannot do this again. We beg her to find something. 25 minutes later she tells us she has us booked on US Air to St. Louis via Pittsburgh. We will have a layover and we will have to get our crap and get to another concourse, but I say lets do it or else we will have no vacation at all.
We wait an hour for our luggage, another 20 minutes for the shuttle and we finally make it over to US Air. We check in. There is only one seat reserved on the plane for us. Not three and they can't seem to find any more. The lady overrides the system though determined for it to not be her problem and sends us through security to the gate. Yes, security again. FML. We get to the gate and go to the desk. We are told to sit and wait, they need to solicit seats. If I could go back and choke the lady at AA who told us she got us on this flight, I would. I really, really would.
I go off to look for a plug because of course, I need to pump. I find one in the bathroom this time, but I have to stand in the corner, facing a wall, next to the paper towel holder and the garbage. I could not be more thrilled.
When I get back to the gate, they still have not found us seats. The plane has boarded and I just begin to cry and so does Gavin. Gavin cries loudly and miserably. And then the Gods smile on us. The flight attendant comes over and says they have found us seats. We finally get on a plane that is going to leave the airport. We are on and settled and moving. Off to Pittsburgh.
We land in Pittsburgh. We get off the plane and oh yes, we are met with the annoucement that due to impending thunderstorms, the airport is closed. I know that this would only happen to me in life. I ponder bringing the kids into the bar so I can have a drink.
We eventually do get to leave Pittsburgh and we arrive in St. Louis. Its 9:30 pm, but we made it.
We have a lovely few days where Gavin gets to go up in the arch, go the the stadium, go to the circus where he is pulled on stage and conducts the band, we go swimming at a friends pool and my mother-in-laws friends throw me a baby shower for the twins. We see friends and family and I get a massage. Nick does a little shopping. We eat great food, we visit, we drink some wine and we have a wonderful time. It feels like a vacation (except for the 3am feedings).
But my luck strikes again and Gavin gets a 104.4 fever and we end up at the childrens hospital for an afternoon because I cannot seem to get it down despite a family friend calling in a precription for him due to the raw red throat he has. I have decided that I am now going to begin rating hospitals and hospital food if we get admitted. My future brother in law mentioned I may be able to do like a hospital version of Zagats. I am going to think about it. Maybe I could make a few bucks.
It could be strep, it may be mono. We go home to pack up and get ready to come home.
Our flight home is relatively uneventful. Besides Caleb throwing up on me three times and leaking breastmilk which leaves a big wet circle on my left side, our flight leaves on time, it arrives in NY early and I only have to tell off one passenger for loudly mentioning as Caleb is crying that his failure to bring his ear plugs could be a fatal or life shortening event in his life. After I let off some steam on him, he is positively delightful, wishing us luck on his way out of the plane.
Luck huh? As the car overheats all the way home and we drive with the heat on high over the Whitestone in 90 degree weather with 90 percent humidity, I think about luck and how I am not sure I need any more luck wished upon me, it seems I may do better in this life without it.
After much thought and discussion (and a little convincing from Grandma Mary Anne) we decided to take a trip to St. Louis. It was hard for me to drop therapy for a few days and doctors appointments (yes, I am being serious) because I did not want Owen to miss treatment. I thought and thought and the idea of a break for all of us seemed like a good idea. Not to mention, we aren't going on vacation this year and Nick had not been home in 2 years and I knew Mary Anne and Joe would love showing off their new grand babies. So off we went.
Tuesday night of last week we arrive at LaGuardia Airport. We have a bag for me, a bag for G, a bag for Nick, two carriers, two car seats, two car seat bases, one double snap and go, one diaper bag, one breast pump bag, one cooler of milk and one bag for the the babies, Nicks book bag and my purse. And I packed light! Thank God for curbside check in. We check three bags at the bargain rate of $25 per bag and move into the security. We are a freak show. We literally have about 12 of those bins lined up with crap in them and we each have to hold a baby as we go through the metal detectors. Their car seats and stroller must go through on the coveyor. Its just nuts. But we make it through with a little sweat and some apologies to the waiting passengers and we move into the gate area. Its about 7pm and our flight leaves at 8:45pm. We grab dinner and find a corner we can take over. We unpack the babies and we wait to board our 3 hour direct flight to St. Louis. I stupidly think to myself, "wow, we are almost through this" and I begin to relax.
All of a sudden, the sign in front of the gate says we are delayed. First an hour, then two, then two and a half. People are grumbling and there is an announcement about delays in other states which caused our plane to be late coming into NY. A further announcement about a half hour later tells us that the flight has been cancelled. The crew has been on the plane for more hours than they are allowed so they cannot turn around and fly to St. Louis. Sorry for ya. The crowd goes wild.
We sit and watch and Nick sneaks off to speak to an AA rep at another desk. Its about 10:30 pm at this point. He is told by the woman to hang out because they are attemmpting to find another flight crew. In the meantime, they are announcing over and over that they cannot control weather and getting upset isn't helping anyone.
At approximately 11:30 they announce that they have found a crew and the flight is on! Yay. Everyone settles into their seats at the gate and I set off in search of a plug so that I may pump. Do you know that there is not one plug in the bathrooms that work? I eventually end up in the space behind the desk at a nearby gate where they keep things like the wheelchairs. I am informed that in 5 minutes a plane will be unloading and that everyone will be walking by me. Have you ever tried to pump breast milk under such pressure? Its not a slow process, nor is it one that you would like to share with a plane full of people, so I do the best I can. But its not much milk and I am starting to worry that I will run out of food for these two.
At 12:40, they announce that our flight has been cancelled. A flight attendant called in sick. I am sitting there thinking about how stupid the person is who just told this crowd that that is why we are not leaving. Lie. Say weather. Say anything. But don't tell a crowd that you have already angered that has been sitting in the airport all night that we cannot leave because a flight attendant called in sick. For the love of God, I will hand out the damn sodas.
We go home. They aren't giving tickets out or vouchers. They are telling you to call a number to complain. There is nothing they can do so they say. We are rebooked the following day for a flight that will layover in Chicago. We are due to leave at 9:55am and arrive in St. Louis via Chicago at 2:35pm.
The following morning, we all get up and get ready again. The few things we had to unload from the car are packed back up and we go back to LaGuardia. We have to go through security again. I want to cry. We make it to the gate and we should be boarding shortly, but no, of course not. We are delayed due to weather in Chicago. We both attempt to breathe and keep our heads about us, so we grab coffee and breakfast and settle in. And one hour later, they announce we will be boarding! We pack up all the crap and go board the plane. We undo the carriage, the car seats, while holding the babies and carrying 5 bags each. We get on the plane and get settled. Gavin has been great this whole time. He has been keeping himself busy and being such a trooper with all the delays. The flight attendant takes him up to meet the pilot. He gets an AA sticker and a card all about the plane we are on. We buckle our seat belts. The captain gets on the speaker and we have been delayed...two hours. Then five minutes later, our flight has been cancelled. Get your bags and get off.
I am wondering if this is the chain of events that will send me over the edge.
Now, I have had enough of American Airlines. I do not ever want to fly with them again. My stroller is stuck on the plane. Nick is on the line holding Owen to talk to one of these idiots and I am standing on the side of the desk holding Caleb. Gavin is talking to anyone and everyone. The gate is chaos again. I finally get someones attention to ask when I can have my car seats and stroller. The lady feels bad for me, so she gets the pilots to get them off the plane and she begins to try to put us on another flight. Shock and awe, there is no more until the following morning. I know if we go home, we will not be going to St. Louis. I cannot do this again. We beg her to find something. 25 minutes later she tells us she has us booked on US Air to St. Louis via Pittsburgh. We will have a layover and we will have to get our crap and get to another concourse, but I say lets do it or else we will have no vacation at all.
We wait an hour for our luggage, another 20 minutes for the shuttle and we finally make it over to US Air. We check in. There is only one seat reserved on the plane for us. Not three and they can't seem to find any more. The lady overrides the system though determined for it to not be her problem and sends us through security to the gate. Yes, security again. FML. We get to the gate and go to the desk. We are told to sit and wait, they need to solicit seats. If I could go back and choke the lady at AA who told us she got us on this flight, I would. I really, really would.
I go off to look for a plug because of course, I need to pump. I find one in the bathroom this time, but I have to stand in the corner, facing a wall, next to the paper towel holder and the garbage. I could not be more thrilled.
When I get back to the gate, they still have not found us seats. The plane has boarded and I just begin to cry and so does Gavin. Gavin cries loudly and miserably. And then the Gods smile on us. The flight attendant comes over and says they have found us seats. We finally get on a plane that is going to leave the airport. We are on and settled and moving. Off to Pittsburgh.
We land in Pittsburgh. We get off the plane and oh yes, we are met with the annoucement that due to impending thunderstorms, the airport is closed. I know that this would only happen to me in life. I ponder bringing the kids into the bar so I can have a drink.
We eventually do get to leave Pittsburgh and we arrive in St. Louis. Its 9:30 pm, but we made it.
We have a lovely few days where Gavin gets to go up in the arch, go the the stadium, go to the circus where he is pulled on stage and conducts the band, we go swimming at a friends pool and my mother-in-laws friends throw me a baby shower for the twins. We see friends and family and I get a massage. Nick does a little shopping. We eat great food, we visit, we drink some wine and we have a wonderful time. It feels like a vacation (except for the 3am feedings).
But my luck strikes again and Gavin gets a 104.4 fever and we end up at the childrens hospital for an afternoon because I cannot seem to get it down despite a family friend calling in a precription for him due to the raw red throat he has. I have decided that I am now going to begin rating hospitals and hospital food if we get admitted. My future brother in law mentioned I may be able to do like a hospital version of Zagats. I am going to think about it. Maybe I could make a few bucks.
It could be strep, it may be mono. We go home to pack up and get ready to come home.
Our flight home is relatively uneventful. Besides Caleb throwing up on me three times and leaking breastmilk which leaves a big wet circle on my left side, our flight leaves on time, it arrives in NY early and I only have to tell off one passenger for loudly mentioning as Caleb is crying that his failure to bring his ear plugs could be a fatal or life shortening event in his life. After I let off some steam on him, he is positively delightful, wishing us luck on his way out of the plane.
Luck huh? As the car overheats all the way home and we drive with the heat on high over the Whitestone in 90 degree weather with 90 percent humidity, I think about luck and how I am not sure I need any more luck wished upon me, it seems I may do better in this life without it.
Thursday, June 17, 2010
The last two weeks...
Its been almost 2 weeks since I posted. Its just been really busy around here as usual. Nick came home and Mary Anne went home. We have had PT and OT every day and I suppose the most interesting news is that we were given 5 days a week PT through early intervention for 45 min a session. That was great. I was ready to battle for 3 days a week and after I said what I had to say, they said okay to 5 days a week. Aunt Kathy came to stay for this week and Gavin graduated from kindergarten! I cannot even believe that he is going to first grade. I remember when he was the size of the twins. He is growing up so fast but we are so proud of him. I will post pics of him in his cap and gown when I get a minute.
The babies are doing great. Both are smiling and cooing, which is adorable. Owen is moving his head more and more from side to side, which is something he could not do at all when born. He is wearing his bar between his braces and it is heavy and quite industrial looking, however, much to my surprise he is able to kick that thing. I imagine its a good workout for his thighs. I love to see him smiling. I have been so worried that with all of the crying, through his therapies and appointments that he may not be a happy, well-adjusted child. But I am assured by people who would know, that although this year will most likely stink, Owen will come out of this a happy boy. I am trying to just keep that in mind as we go through this process.
Caleb is so cute. He smiles so much at me. He almost looks shy right before he does it and you can see how happy he is. I love it. He also coos a lot. He will ooohhh and aaahhh with me as if we are having a conversation. I cannot explain how cute it is.
And G is off for the summer! We let him have a few friends over for a graduation bbq and we celebrated not only his moving on to 1st grade, but also to the school around the corner next year. We will miss St. Peter's but he will be great at Lincoln and its a great school and its a block and a half away. No more afterschool until 6pm, no more stress in the evenings while we try to squeeze in homework, dinner, bathtime, time with us, and scooby. I think this will be a good change.
I am looking forward to my last month off before I return to work. I have all three kids home (ha, I know I am crazy) and I hope we can figure out how to enjoy this summer around appointments and therapy.
Coming up next week is more OT, PT, meeting our early intervention therapists and a short trip to STL. Stay tuned.
The babies are doing great. Both are smiling and cooing, which is adorable. Owen is moving his head more and more from side to side, which is something he could not do at all when born. He is wearing his bar between his braces and it is heavy and quite industrial looking, however, much to my surprise he is able to kick that thing. I imagine its a good workout for his thighs. I love to see him smiling. I have been so worried that with all of the crying, through his therapies and appointments that he may not be a happy, well-adjusted child. But I am assured by people who would know, that although this year will most likely stink, Owen will come out of this a happy boy. I am trying to just keep that in mind as we go through this process.
Caleb is so cute. He smiles so much at me. He almost looks shy right before he does it and you can see how happy he is. I love it. He also coos a lot. He will ooohhh and aaahhh with me as if we are having a conversation. I cannot explain how cute it is.
And G is off for the summer! We let him have a few friends over for a graduation bbq and we celebrated not only his moving on to 1st grade, but also to the school around the corner next year. We will miss St. Peter's but he will be great at Lincoln and its a great school and its a block and a half away. No more afterschool until 6pm, no more stress in the evenings while we try to squeeze in homework, dinner, bathtime, time with us, and scooby. I think this will be a good change.
I am looking forward to my last month off before I return to work. I have all three kids home (ha, I know I am crazy) and I hope we can figure out how to enjoy this summer around appointments and therapy.
Coming up next week is more OT, PT, meeting our early intervention therapists and a short trip to STL. Stay tuned.
Saturday, June 5, 2010
Kate made it through unscathed...
And I think she will still want kids one day!
We have made it through week one of no daddy and thank God for Kate. She was awesome. I was worried not having Nick here and all those night feedings, but she did amazing. Nick and I have a rhythm to nighttime feedings. He brings the babies to the livingroom, while I heat bottles and make formula. He turns on the tv, I grab spitrags. We sit. We do not speak to each other or the babies unless one of us wants to watch something else. We feed, we burp, we change, we swaddle and we rock. We wait. The babies eyes begin to close and we put them in bed. If I am lucky, I pumped at the last feeding and don't have to do it until the morning feeding. The process lasts 30-40 minutes and we are back in bed. Kate mastered the nighttime baby dance. I am going to miss her dearly.
This week we had daily therapy, OT on Tuesday, appointment with ortho on Tuesday and the all important and somewhat dreaded MRI. We also had our orthotic appointment where Owen got the bar put between his braces that help keep his feet positioned and his hips a bit more open. But, back to the MRI. So Owens brain is normal. Yay! I was terrified that because he has not smiled at me that he wasn't in there. I would go back and forth in my head feeling confident he was fine and then terrified he was not. But he is and of course, approximately 20 minutes after I found out that Owens brain was normal, he proceeded to smile a huge smile for the assistant orthotist, a bald man with huge teeth. Of course. So mommy still has not received a smile, but that man has. Nice. Owens spine is borderline for a tether. My understand of a tethered spine is that when you are born your spinal cord is longer to accomodate for your growing. If its tethered, there is a pull in there somewhere where the spinal cord must be released. Owens spinal cord is at 2-3 and should be a little longer however its not conclusive. So we wait until he is bigger and see how things are developing. Great news. Big sigh of relief.
This week brings Grandma Mary Anne and daily PT and OT. We have our much anticipated meeting with Early Intervention to start home PT and OT (Yay!!! I cannot afford Manhattan parking any longer!). And of course, this week brings Nick home and I cannot wait. This year is so different than last year with respect to my 10 days home without Nick. I was blogging then and if I remember correctly, I was bored and awaiting Lolas shedding to have something to clean. Oh what a difference a year makes. Lola is still shedding and I am still vacuuming, but its so much different. There isn't much boredom or down time with two more kids. There is not much relaxing, napping or quality G (Gavin) time.
Anyway, its all almost over and I can't wait to see my husband.
We have made it through week one of no daddy and thank God for Kate. She was awesome. I was worried not having Nick here and all those night feedings, but she did amazing. Nick and I have a rhythm to nighttime feedings. He brings the babies to the livingroom, while I heat bottles and make formula. He turns on the tv, I grab spitrags. We sit. We do not speak to each other or the babies unless one of us wants to watch something else. We feed, we burp, we change, we swaddle and we rock. We wait. The babies eyes begin to close and we put them in bed. If I am lucky, I pumped at the last feeding and don't have to do it until the morning feeding. The process lasts 30-40 minutes and we are back in bed. Kate mastered the nighttime baby dance. I am going to miss her dearly.
This week we had daily therapy, OT on Tuesday, appointment with ortho on Tuesday and the all important and somewhat dreaded MRI. We also had our orthotic appointment where Owen got the bar put between his braces that help keep his feet positioned and his hips a bit more open. But, back to the MRI. So Owens brain is normal. Yay! I was terrified that because he has not smiled at me that he wasn't in there. I would go back and forth in my head feeling confident he was fine and then terrified he was not. But he is and of course, approximately 20 minutes after I found out that Owens brain was normal, he proceeded to smile a huge smile for the assistant orthotist, a bald man with huge teeth. Of course. So mommy still has not received a smile, but that man has. Nice. Owens spine is borderline for a tether. My understand of a tethered spine is that when you are born your spinal cord is longer to accomodate for your growing. If its tethered, there is a pull in there somewhere where the spinal cord must be released. Owens spinal cord is at 2-3 and should be a little longer however its not conclusive. So we wait until he is bigger and see how things are developing. Great news. Big sigh of relief.
This week brings Grandma Mary Anne and daily PT and OT. We have our much anticipated meeting with Early Intervention to start home PT and OT (Yay!!! I cannot afford Manhattan parking any longer!). And of course, this week brings Nick home and I cannot wait. This year is so different than last year with respect to my 10 days home without Nick. I was blogging then and if I remember correctly, I was bored and awaiting Lolas shedding to have something to clean. Oh what a difference a year makes. Lola is still shedding and I am still vacuuming, but its so much different. There isn't much boredom or down time with two more kids. There is not much relaxing, napping or quality G (Gavin) time.
Anyway, its all almost over and I can't wait to see my husband.
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