And believe me you would not be the first, but I feel like my moods are sometimes tied to the good news or bad news that each therapy session brings. Today was a good day. Sort of.
We had PT this morning at the hospital where N and Z were born, and we were talking about the various equipment that N might need. I had started asking about this because while we don't need anything right now, the process of getting the equipment can take months (in some cases over a year) depending on whether the equipment is approved or denied and what the appeal process is. The other problem is that insurance companies will only pay for certain types of equipment at certain times. For example, if we chose to get N a wheelchair this year we had better make sure it fits him until he is 6 because insurance will only pay for ONE every FIVE years! Because you know, kids don't grow that much in a five year span..........
Anyway, I had asked about what equipment they thought N might need in the next 6 months to a year so that I could begin the process of figuring out what our insurance company will pay for, what we are going to have to fight for, and what DH (who needs a nickname, I'm thinking Excel due to his fondness for spreadsheets, lol) and I will have to pay for ourselves. In our discussions today, and after N was doing some really nice "walking" with his AFO's and assistance shifting his weight, his PT said that if he continues to improve with his walking and ability to hold himself up we may not even need a gait trainer but could skip right to a walker. Obviously its still really early to know anything for sure. But I couldn't help but feel so very happy when I heard this.
Some days it's the little (ok really big!) things that just make my day!
Tuesday, July 26, 2011
Sunday, July 24, 2011
Yes..............it's a DOG!
We have a large dog, in my opinion she is the perfect size, but I guess some people feel a great dane is a huge dog. I don't get to take her out for walks as often as I used too, although she walks well with the stroller so once it cools down around here I plan to walk with her and the boys in the early evenings. In preparation for that I have started coming up with responses to the stupid things people say to me when I'm out walking her (and you thought people made stupid comments when they see twins!):
1- "Is that a dog or a pony?" It's a dog, she ate the pony.
2- "Do you have a saddle for that?" No, do you have a muzzle?
3- "Wow, she must walk you!" I walk my dog. Just because your five pound ball of fluff drags you down the street due to your inability to obedience train, doesn't mean mine does.
4- "Wow, she must eat a ton!" She eats stupid people for lunch, sometimes the meals are bigger than others.
5- "Look a dalmation!" Actually she's a cow, she moos and everything.
6- "Does she live in the house?" Well, we debated making the kids live outside so the dog would have enough room, but we thought people might object to that.
1- "Is that a dog or a pony?" It's a dog, she ate the pony.
2- "Do you have a saddle for that?" No, do you have a muzzle?
3- "Wow, she must walk you!" I walk my dog. Just because your five pound ball of fluff drags you down the street due to your inability to obedience train, doesn't mean mine does.
4- "Wow, she must eat a ton!" She eats stupid people for lunch, sometimes the meals are bigger than others.
5- "Look a dalmation!" Actually she's a cow, she moos and everything.
6- "Does she live in the house?" Well, we debated making the kids live outside so the dog would have enough room, but we thought people might object to that.
Thursday, July 21, 2011
Can we ever do enough?
I seriously ask myself this question at least once a day. Am I doing enough for N, is Z getting enough time with mommy? It drives me crazy. I think the biggest issue is the amount of "stuff" we are told to do by the various therapists.
For example for N: his PT wants us to work on sitting, rolling (to his right side from back to belly, he can go to his left), crawling, crossing mid line, standing, and walking. His Oral/Motor specialist wants us to spend 15 minutes a day working on jaw strength/chewing as well as trying to get him to drink from a regular cup, his OT wants us to work on pincer grasp for his left hand (his left side is his weaker side and while he can use the left, he chooses not too), and his DI wants us to work on waving hi/bye, clapping, identifying things, and language in general. This is in addition to the therapy sessions he has every day (except Monday's), and of course nap time (the boys still take two per day) must be fit in, as well as 3 meals a day and 2 snacks a day. Obviously we can't (and aren't expected) to work on all of the things his PT has assigned as "homework" everyday. But we are supposed to work on 2-3 each day. As for Z, we are working on language for him as well as walking. It makes for days that fly by. It also makes for a mommy who asks, what about fun time?
I try to fit in the PT stuff 3 times per day, the language constantly, and the OT stuff at meals. I need to get better on the Oral/Motor assignment as I am always forgetting to do the jaw strengthening (he uses the cup at dinnertime). I make it work, but it isn't easy and I always feel like I should be doing more. More therapy, more exercises, and more learning time.
I worry about not taking the boys to the park, or for a walk, or in the pool, etc. Am I doing them a huge disservice focusing so much on therapy and not doing typical "kid" stuff? Is it not a huge deal right now because they are so young and won't remember anyway? The mommy guilt kicks into high gear, particularly when someone asks me "Did you take the boys for a walk today?" or "Were you able to get out and enjoy this beautiful weather?" (ok that particular phrase hasn't been used in about two months considering how hot its been). I feel awful when I say no.
I also have a hard time working with N and making Z play by himself, or telling him "No" as he tries to climb on mommy while I'm trying to help N sit, or do stretches. I try to make it up to him and spend one on one time with him (particularly on the weekend when daddy is home to help) but I worry that it isn't enough and that Z will resent his brother.
I don't want them to have a childhood filled with constant work and no play, they are children and deserve to have fun. I also don't want to look back and think "if I had made N work on sitting a little more, would he be walking today". It's those things that run through your mind, the possible consequences and, outcomes of every move you make now on your child's future.
Does the mommy guilt ever end?
For example for N: his PT wants us to work on sitting, rolling (to his right side from back to belly, he can go to his left), crawling, crossing mid line, standing, and walking. His Oral/Motor specialist wants us to spend 15 minutes a day working on jaw strength/chewing as well as trying to get him to drink from a regular cup, his OT wants us to work on pincer grasp for his left hand (his left side is his weaker side and while he can use the left, he chooses not too), and his DI wants us to work on waving hi/bye, clapping, identifying things, and language in general. This is in addition to the therapy sessions he has every day (except Monday's), and of course nap time (the boys still take two per day) must be fit in, as well as 3 meals a day and 2 snacks a day. Obviously we can't (and aren't expected) to work on all of the things his PT has assigned as "homework" everyday. But we are supposed to work on 2-3 each day. As for Z, we are working on language for him as well as walking. It makes for days that fly by. It also makes for a mommy who asks, what about fun time?
I try to fit in the PT stuff 3 times per day, the language constantly, and the OT stuff at meals. I need to get better on the Oral/Motor assignment as I am always forgetting to do the jaw strengthening (he uses the cup at dinnertime). I make it work, but it isn't easy and I always feel like I should be doing more. More therapy, more exercises, and more learning time.
I worry about not taking the boys to the park, or for a walk, or in the pool, etc. Am I doing them a huge disservice focusing so much on therapy and not doing typical "kid" stuff? Is it not a huge deal right now because they are so young and won't remember anyway? The mommy guilt kicks into high gear, particularly when someone asks me "Did you take the boys for a walk today?" or "Were you able to get out and enjoy this beautiful weather?" (ok that particular phrase hasn't been used in about two months considering how hot its been). I feel awful when I say no.
I also have a hard time working with N and making Z play by himself, or telling him "No" as he tries to climb on mommy while I'm trying to help N sit, or do stretches. I try to make it up to him and spend one on one time with him (particularly on the weekend when daddy is home to help) but I worry that it isn't enough and that Z will resent his brother.
I don't want them to have a childhood filled with constant work and no play, they are children and deserve to have fun. I also don't want to look back and think "if I had made N work on sitting a little more, would he be walking today". It's those things that run through your mind, the possible consequences and, outcomes of every move you make now on your child's future.
Does the mommy guilt ever end?
Wednesday, July 20, 2011
Wills
It's the dreaded topic when you have children, who are we going to leave them too should something happen to us. It's not an easy decision at any point, but when you add a child with special needs to that equation well it becomes downright impossible.
DH and I haven't done our wills yet, and considering I have a legal background you can bet that this fact weighs on me everyday. I don't want a court to decide who takes care of my children, but I can't seem to decide either.
When we first got pregnant, and even before (since we tried for a year before moving on to IVF) we discussed our options. His sister was out because she and her partner, how do I put this delicately..........I can't, they are crazy. Putting that aside they live in another state pretty far from ours and we don't want that to happen. I have two brothers, one is not married and has no children. He has a bit of a temper and isn't the most patient person in the world, this could change when/if he has kids but I'm not betting on that, so he is out. My other brother is married and has two kids both of whom have some minor behavioral issues (somewhat medical based but also due to a lack of consequences/discipline for their actions) and on top of that they will inherit my SIL's nieces when her parents can no longer care for them which will likely be in the next 3-5 years. So they are out. Which leaves other family/friends who are either unmarried, married to someone I don't like, don't have children yet (so I have no real sense of what type of parent they will be), or are just plain unsuitable. I know a fair amount of people leave their kids to their parents. I am not a fan of this option (although to be honest it might be our only one for now) as I believe grandparents should do just that, grandparent. Not have to raise/discipline. We have some friends that I think would be suitable, but its such a hard topic to broach..........and with the special needs aspect I'm afraid to do so.
This used to be a non issue. I had a good friend who I planned to leave my kids too, decided long before I had kids or even married DH. Then there was a huge falling out with regard to my bridal shower (likely to be a post at some point, don't worry) having nothing to do with me at all, and she stopped talking to me. So..........not an option any more.
This topic literally keeps me awake at night. It's hard enough to ask someone to raise your kids for you, but to not only ask them to raise your kids but also deal with a child who has special needs when you're really not sure what level of care he may need as he is still so young.........it's impossible. I know we have to deal with this. If god forbid something happened to DH and I, N would get totally screwed as the state would use his inheritance to render him unable to receive any aid from them until the money was gone (he doesn't currently receive any aid from the State but I anticipate he will at some point depending on his level of need) as we do not have a special needs trust set up for him yet. We definitely don't want that to happen.
For those of you who have children with special needs (and even those who don't) what arrangements have you made? How did you bring up the topic with the people you chose? I'll take all the help I can get!
DH and I haven't done our wills yet, and considering I have a legal background you can bet that this fact weighs on me everyday. I don't want a court to decide who takes care of my children, but I can't seem to decide either.
When we first got pregnant, and even before (since we tried for a year before moving on to IVF) we discussed our options. His sister was out because she and her partner, how do I put this delicately..........I can't, they are crazy. Putting that aside they live in another state pretty far from ours and we don't want that to happen. I have two brothers, one is not married and has no children. He has a bit of a temper and isn't the most patient person in the world, this could change when/if he has kids but I'm not betting on that, so he is out. My other brother is married and has two kids both of whom have some minor behavioral issues (somewhat medical based but also due to a lack of consequences/discipline for their actions) and on top of that they will inherit my SIL's nieces when her parents can no longer care for them which will likely be in the next 3-5 years. So they are out. Which leaves other family/friends who are either unmarried, married to someone I don't like, don't have children yet (so I have no real sense of what type of parent they will be), or are just plain unsuitable. I know a fair amount of people leave their kids to their parents. I am not a fan of this option (although to be honest it might be our only one for now) as I believe grandparents should do just that, grandparent. Not have to raise/discipline. We have some friends that I think would be suitable, but its such a hard topic to broach..........and with the special needs aspect I'm afraid to do so.
This used to be a non issue. I had a good friend who I planned to leave my kids too, decided long before I had kids or even married DH. Then there was a huge falling out with regard to my bridal shower (likely to be a post at some point, don't worry) having nothing to do with me at all, and she stopped talking to me. So..........not an option any more.
This topic literally keeps me awake at night. It's hard enough to ask someone to raise your kids for you, but to not only ask them to raise your kids but also deal with a child who has special needs when you're really not sure what level of care he may need as he is still so young.........it's impossible. I know we have to deal with this. If god forbid something happened to DH and I, N would get totally screwed as the state would use his inheritance to render him unable to receive any aid from them until the money was gone (he doesn't currently receive any aid from the State but I anticipate he will at some point depending on his level of need) as we do not have a special needs trust set up for him yet. We definitely don't want that to happen.
For those of you who have children with special needs (and even those who don't) what arrangements have you made? How did you bring up the topic with the people you chose? I'll take all the help I can get!
Monday, July 18, 2011
Downs...........
I wish the title of this post could be "ups and downs" but to be honest the last week or two I've just felt down. So down in fact that on the advice of a good friend (who will likely make many appearances here so we will name her "Vegas") I began to see a therapist. I've only had two sessions so far so no real sense of if it will be helpful but I am hopeful it will be.
Why am I so down you ask? Well, I am still struggling to come to terms with the cerebral palsy diagnosis that we received for N in April of this year. We knew many months before that that we would be getting the diagnosis, but hearing the words from the doctor were still devastating. I struggle every day with the feelings of guilt for delivering them too early. I feel guilt for carrying them in the first place. You see I have what's called a "T" shaped uterus. I was told I would likely only make it to 35 weeks with one baby, carrying two was not a good idea for me. As a result of issues with both myself and DH we had to do fertility treatments, and our only option was IVF. We put back two eggs, which we were encouraged to do by our RE. I never expected them to both take, no one did. We had a 50/50 shot of even one taking, let alone both. Then (as much as I would have been devastated) we figured one would make it beyond 8 weeks since he was far behind his brother in measurements. We got to 12 weeks, with both babies doing well and we were told to reduce. I thought I could do it, going into it knowing my issues I thought that if we wound up with more than one I would be able to reduce. But I saw the heartbeats and I just couldn't do it. I thought I would prove the doctors wrong. I bought a fantastic book (Dr. Luke's Expecting Twins, Triplets, Quads) and followed ALL of the advice. I went on a reduced work schedule at 23 weeks, totally out of work at 27 weeks. I didn't lift anything, exercise, walk around much, etc. I was experiencing an uneventful pregnancy. Then at 30w3d my water broke. I had no warning prior to that, no contractions, nothing. My mom rushed me to the hospital hoping we were wrong, (DH had to get home from work and met us there) but we weren't. My water had broken at 8 am, I delivered both my sons and was back in recovery by noon. It was a QUICK labor. There was no time for drugs, I delivered the boys vaginally and to be honest their birth day was one of the worst days of my life. I was only able to glance at them quickly before they were rushed to the NICU. Until I was able to see them an hour later I had no idea if they were alive or dead. I felt like a failure. I had failed my babies, and I had failed my husband.
We struggled through the NICU time but thought it would be over once we could take the boys home. On the day we took N home we were advised he had PVL's (cysts on the brain that show where damage is) that were "tiny but numerous" according to their neurologist. We were told he had a "greater than 50% chance of CP and a 30% chance of seizures". I heard that info and thought well that leaves almost 50% that he won't, and that's what I thought until 5 months later when at our first appointment with a developmental pediatrician that the CP diagnosis was coming.
After we brought the boys home from the NICU I immediately went into mommy mode. We got started on Early Intervention and the boys began OT two months after they came home. We added PT for both of them in December of last year at the hospital they were born, and then another PT for N through EI. Recently we added Developmental Intervention last month ("play" therapy) for both boys as well. We have therapy four days a week and fill in doctors appointments when we can as well. Its a little crazy but if it helps my boys then its worth it!
So that's some background. Why am I so down lately? Well because N has been struggling to sit for months now. He works so hard and I feel awful that he is still struggling with it. He has made progress of course, two or three months ago he couldn't even prop sit for more than a minute or so and sitting with no support at all lasted 30 seconds at best. Now he is working on his endurance and can prop sit for 15 minutes. He needs corrections during that time, but at this point (for the most part) he can correct himself with a simple touch to his legs or back. So he is improving and I know that. But some days................I just want to scream. Because he isn't sitting yet and he is a year old. His brother is sitting, crawling, pulling to stand, cruising.................and N just lays on the floor unless someone puts him in a different position. Some days I feel hopeless, that he will never sit, crawl, or walk. I want to believe I will be ok with all of that, that its ok that he can't do anything on his own because he is healthy and happy. But the reality is, I want to see my sons run around together. Someone sent me the link for the youtube video of the twin boys talking to each other. I cried watching it. I don't know if my sons will ever be able to do that................and it breaks my heart. I made a lot of good friends who were going through IVF at the same time as I was, I've never met them in real life but they are still my friends. Some of their babies are younger than mine and doing way more. I've had to block their posts on Facebook because seeing the updates with babies crawling, cruising, walking, talking.......just made me cry. I feel awful that I can't be happy for them. Then of course there is Z. I adore my baby and can't imagine life without him or his brother............but Z is an everyday reminder of what N is not doing and may never do.
I have good days and bad days, I expect they will be bad for a while. Stay with me though, I swear the good days will come too and hopefully become more frequent.
Why am I so down you ask? Well, I am still struggling to come to terms with the cerebral palsy diagnosis that we received for N in April of this year. We knew many months before that that we would be getting the diagnosis, but hearing the words from the doctor were still devastating. I struggle every day with the feelings of guilt for delivering them too early. I feel guilt for carrying them in the first place. You see I have what's called a "T" shaped uterus. I was told I would likely only make it to 35 weeks with one baby, carrying two was not a good idea for me. As a result of issues with both myself and DH we had to do fertility treatments, and our only option was IVF. We put back two eggs, which we were encouraged to do by our RE. I never expected them to both take, no one did. We had a 50/50 shot of even one taking, let alone both. Then (as much as I would have been devastated) we figured one would make it beyond 8 weeks since he was far behind his brother in measurements. We got to 12 weeks, with both babies doing well and we were told to reduce. I thought I could do it, going into it knowing my issues I thought that if we wound up with more than one I would be able to reduce. But I saw the heartbeats and I just couldn't do it. I thought I would prove the doctors wrong. I bought a fantastic book (Dr. Luke's Expecting Twins, Triplets, Quads) and followed ALL of the advice. I went on a reduced work schedule at 23 weeks, totally out of work at 27 weeks. I didn't lift anything, exercise, walk around much, etc. I was experiencing an uneventful pregnancy. Then at 30w3d my water broke. I had no warning prior to that, no contractions, nothing. My mom rushed me to the hospital hoping we were wrong, (DH had to get home from work and met us there) but we weren't. My water had broken at 8 am, I delivered both my sons and was back in recovery by noon. It was a QUICK labor. There was no time for drugs, I delivered the boys vaginally and to be honest their birth day was one of the worst days of my life. I was only able to glance at them quickly before they were rushed to the NICU. Until I was able to see them an hour later I had no idea if they were alive or dead. I felt like a failure. I had failed my babies, and I had failed my husband.
We struggled through the NICU time but thought it would be over once we could take the boys home. On the day we took N home we were advised he had PVL's (cysts on the brain that show where damage is) that were "tiny but numerous" according to their neurologist. We were told he had a "greater than 50% chance of CP and a 30% chance of seizures". I heard that info and thought well that leaves almost 50% that he won't, and that's what I thought until 5 months later when at our first appointment with a developmental pediatrician that the CP diagnosis was coming.
After we brought the boys home from the NICU I immediately went into mommy mode. We got started on Early Intervention and the boys began OT two months after they came home. We added PT for both of them in December of last year at the hospital they were born, and then another PT for N through EI. Recently we added Developmental Intervention last month ("play" therapy) for both boys as well. We have therapy four days a week and fill in doctors appointments when we can as well. Its a little crazy but if it helps my boys then its worth it!
So that's some background. Why am I so down lately? Well because N has been struggling to sit for months now. He works so hard and I feel awful that he is still struggling with it. He has made progress of course, two or three months ago he couldn't even prop sit for more than a minute or so and sitting with no support at all lasted 30 seconds at best. Now he is working on his endurance and can prop sit for 15 minutes. He needs corrections during that time, but at this point (for the most part) he can correct himself with a simple touch to his legs or back. So he is improving and I know that. But some days................I just want to scream. Because he isn't sitting yet and he is a year old. His brother is sitting, crawling, pulling to stand, cruising.................and N just lays on the floor unless someone puts him in a different position. Some days I feel hopeless, that he will never sit, crawl, or walk. I want to believe I will be ok with all of that, that its ok that he can't do anything on his own because he is healthy and happy. But the reality is, I want to see my sons run around together. Someone sent me the link for the youtube video of the twin boys talking to each other. I cried watching it. I don't know if my sons will ever be able to do that................and it breaks my heart. I made a lot of good friends who were going through IVF at the same time as I was, I've never met them in real life but they are still my friends. Some of their babies are younger than mine and doing way more. I've had to block their posts on Facebook because seeing the updates with babies crawling, cruising, walking, talking.......just made me cry. I feel awful that I can't be happy for them. Then of course there is Z. I adore my baby and can't imagine life without him or his brother............but Z is an everyday reminder of what N is not doing and may never do.
I have good days and bad days, I expect they will be bad for a while. Stay with me though, I swear the good days will come too and hopefully become more frequent.
Welcome!
I have blogged in the past and found it to be a great source of release for me, with everything going on with my boys right now I felt that it would be helpful to me to do it again. I can't promise the entries will always be uplifting and happy (particularly since I seem to be in a slump right now) but they will always be honest.
I will be keeping this blog anonymous so pictures showing the faces of my adorable little boys wont be here. My DH has this fear that someday the kids will read what I write, which is why I needed this blog. I keep another website with pictures and updates, etc., for family and friends and because of this "fear" I feel like I always have to be upbeat and positive in every entry I make. Its hard, because some days I don't feel upbeat I feel defeated. I don't get the support I need because very few people know how I am really feeling. So I am doing what most normal people do nowadays............turning to the internet! lol.
I hope you will join me on this journey, and that you will check out some of the blogs I follow. The women who write them are some of the strongest people I've "met" and I hope that I can be as positive and helpful to my children as they are to theirs.
I will be keeping this blog anonymous so pictures showing the faces of my adorable little boys wont be here. My DH has this fear that someday the kids will read what I write, which is why I needed this blog. I keep another website with pictures and updates, etc., for family and friends and because of this "fear" I feel like I always have to be upbeat and positive in every entry I make. Its hard, because some days I don't feel upbeat I feel defeated. I don't get the support I need because very few people know how I am really feeling. So I am doing what most normal people do nowadays............turning to the internet! lol.
I hope you will join me on this journey, and that you will check out some of the blogs I follow. The women who write them are some of the strongest people I've "met" and I hope that I can be as positive and helpful to my children as they are to theirs.
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