Being the parent of a child with special needs is lonely. It's hard to really have a social life with everything else you have going on, and it's also hard to connect with people who aren't in the same place you are. Don't get me wrong, I have some great friends both in real life and online but all of them either don't have kids or don't have kids with special needs. Not that I want to surround myself (or my children) with only families like us, since that isn't what we should do but I guess it would be nice to have someone to talk to or go out with who is in the same (or at least similar) place that I am.
I feel awkward going to an event with my local multiples group since they can all just let their kids run around and play, but I can't. But I also don't necessarily fit in with a family that has a child with special needs, because Z doesn't. And seeing him run around and play might be upsetting to the other family. I feel like we really don't fit in anywhere, and for some reason its really hitting me lately. The weather is getting nicer and people are planning play date and I just feel lonely. I don't want to keep the boys isolated, they need to learn to play with other children so I need to get past this (since I am sure its all in my head) but it's definitely a struggle.
Tuesday, March 20, 2012
Thursday, March 8, 2012
A day at the zoo
We had some beautiful weather today so the boys and I headed to the zoo. I thought it would be good to get them out and it was, but for me...........it was difficult. There were so many kids walking around playing, climbing on fake animals. In particular there was a set of twins, only 15 months old, identical, and walking all over. I wanted to cry. Just when I think I have accepted, it hits me again. I know it will pass, but in the moment......its hard. I think the pregnancy hormones make it worse, or at least that's what I keep telling myself. I can blame post partum after that, so I figure I have at least a year or so of excuses left. It gets easier I think, as time passes. But there are still some days when I am back in that initial grieving stage that I thought I had left behind.
It seems silly to get so upset still. N is doing SO well! Each day I am amazed by the stamina this little boy has. Yesterday was a pretty good day as well and so we took his gait trainer outside and walked up the block. I think seeing Z walking ahead of him gives him motivation and while he at times still needs the tiniest of pushes from behind (I mean I am literally barely touching it but I think it lets him think I am helping even when he really doesn't need it) N is doing fantastically with it. At PT on Tuesday he was working on pulling himself to stand and working on cruising. I am just so very proud of him! N has also started to say "more" (which you know he is saying since he signs it with the word, otherwise you would have no clue) and I know more words are coming!
Z is also doing great. All of a sudden in the last two weeks his speech has exploded. It started with the word "more" (well his version of it) while signing it too so I knew he knew what it meant. Now he is trying to say fruit, down, dog, milk, sit, and his brothers name. He walks everywhere now and loves to be outside. I am looking forward to when everyday is nice out and we can go play all the time.
It seems silly to get so upset still. N is doing SO well! Each day I am amazed by the stamina this little boy has. Yesterday was a pretty good day as well and so we took his gait trainer outside and walked up the block. I think seeing Z walking ahead of him gives him motivation and while he at times still needs the tiniest of pushes from behind (I mean I am literally barely touching it but I think it lets him think I am helping even when he really doesn't need it) N is doing fantastically with it. At PT on Tuesday he was working on pulling himself to stand and working on cruising. I am just so very proud of him! N has also started to say "more" (which you know he is saying since he signs it with the word, otherwise you would have no clue) and I know more words are coming!
Z is also doing great. All of a sudden in the last two weeks his speech has exploded. It started with the word "more" (well his version of it) while signing it too so I knew he knew what it meant. Now he is trying to say fruit, down, dog, milk, sit, and his brothers name. He walks everywhere now and loves to be outside. I am looking forward to when everyday is nice out and we can go play all the time.
Wednesday, February 22, 2012
Life.........
Things have been crazy at our house. The pregnancy is going well although we had a scare for a bit. My bloodwork came back a bit off during my first trimester screening so DH and I decided to do a CVS to determine if the baby was healthy. After a long week waiting for the results we learned that HE was very healthy and we both breathed a sigh of relief. Unfortunately at the same time we learned that I have a 20% increased risk of pre-eclampsia and Intra-Uterine Growth Restriction. While 20% isn't a huge increase in risk, it really threw me for a loop since I thought that DH and I had done all we could to avoid another preemie and it turns out that sometimes we just can't control everything despite what we think.
As a result of the potential risks for me as well as my pre-existing risk, I have begun to interview babysitters to help out with doctors appointments and potentially be able to become full time if I do wind up on bedrest. Considering I have (literally) never left my sons with anyone other than my mother or my husband, this is a big step for me and is giving me heart palpitations. I think my concerns are added upon by the hell that they went through in the NICU, N's CP and risk for seizures, and the fact that neither are verbal (yet) so they can't tell me if something happens. It all adds up to one very in a panic mommy. I did interview someone I really liked today, her background checks all came back good, and she is an EMT. I have another interview tomorrow and a few other candidates to peruse before I make my decision. (I used sittercity.com)
N has been working very hard in his gait trainer, and has gotten good at doing laps. We haven't yet been able to get him to just start walking on his own with it without doing laps, and I am hopeful that once the warmer weather comes and I can take him to a local park or even our backyard it will encourage him to walk and realize that the gait trainer is his mode of transportation. We did our six month review for the early intervention services and set some new goals for him. He is doing well with sitting in a chair, or on our steps, and when put into quad can hold the position and even rock a bit. With minimal assistance he can crawl in quad. My next goal for him is to be able to get into quad by himself. Once he is in quad he is strong enough to pull himself to kneeling on something, but since he can't get into quad yet he is unable to do this without help. I am looking into some "knee pad" type things that will maybe give him some additional traction to get into quad. Anyone have suggestions?
Z is doing well, he was actually dismissed from PT and will be seen again at 24 months adjusted. He has just started saying some "words" and seems to be saying more, fruit, and down (or dog could go either way!).
I am plugging along. DH has been working crazy hours so I haven't been getting a break from the time the boys get up until they go to bed (another reason for a babysitter). Z has entered the terrible twos (I think) despite only being 21 months old and by the end of the day I am ready to lock myself in the bathroom.
I think emotionally I am also struggling right now as my mom just sold my childhood home. After my dad died in 2009, she decided it was time to get rid of the house as it was way too big for one person (or two really but that's beside the point). She and my "middle" brother (my brothers are fraternal twins) spent about a year updating the home and getting it ready to be sold. Like most places the housing market here isn't great so it took a while (and a few drops in price) but it has finally sold. There is a part of me that is happy it is sold as I know financially it's better for my mom, but on the other hand I am sad as it is the house I lived in for about 26 years (with a few years out for college/grad school) and so I am struggling with it not being ours anymore. It is also of course where my strongest memories of my father are. Being the only girl, I was Daddy's Little Girl, from the day I was born until the day he died. I still miss him everyday and will also wish that my boys had gotten a chance to know him. Obviously the pregnancy hormones are making this a bit worse and with the loss of the house now..............well I've done some crying.
As a result of the potential risks for me as well as my pre-existing risk, I have begun to interview babysitters to help out with doctors appointments and potentially be able to become full time if I do wind up on bedrest. Considering I have (literally) never left my sons with anyone other than my mother or my husband, this is a big step for me and is giving me heart palpitations. I think my concerns are added upon by the hell that they went through in the NICU, N's CP and risk for seizures, and the fact that neither are verbal (yet) so they can't tell me if something happens. It all adds up to one very in a panic mommy. I did interview someone I really liked today, her background checks all came back good, and she is an EMT. I have another interview tomorrow and a few other candidates to peruse before I make my decision. (I used sittercity.com)
N has been working very hard in his gait trainer, and has gotten good at doing laps. We haven't yet been able to get him to just start walking on his own with it without doing laps, and I am hopeful that once the warmer weather comes and I can take him to a local park or even our backyard it will encourage him to walk and realize that the gait trainer is his mode of transportation. We did our six month review for the early intervention services and set some new goals for him. He is doing well with sitting in a chair, or on our steps, and when put into quad can hold the position and even rock a bit. With minimal assistance he can crawl in quad. My next goal for him is to be able to get into quad by himself. Once he is in quad he is strong enough to pull himself to kneeling on something, but since he can't get into quad yet he is unable to do this without help. I am looking into some "knee pad" type things that will maybe give him some additional traction to get into quad. Anyone have suggestions?
Z is doing well, he was actually dismissed from PT and will be seen again at 24 months adjusted. He has just started saying some "words" and seems to be saying more, fruit, and down (or dog could go either way!).
I am plugging along. DH has been working crazy hours so I haven't been getting a break from the time the boys get up until they go to bed (another reason for a babysitter). Z has entered the terrible twos (I think) despite only being 21 months old and by the end of the day I am ready to lock myself in the bathroom.
I think emotionally I am also struggling right now as my mom just sold my childhood home. After my dad died in 2009, she decided it was time to get rid of the house as it was way too big for one person (or two really but that's beside the point). She and my "middle" brother (my brothers are fraternal twins) spent about a year updating the home and getting it ready to be sold. Like most places the housing market here isn't great so it took a while (and a few drops in price) but it has finally sold. There is a part of me that is happy it is sold as I know financially it's better for my mom, but on the other hand I am sad as it is the house I lived in for about 26 years (with a few years out for college/grad school) and so I am struggling with it not being ours anymore. It is also of course where my strongest memories of my father are. Being the only girl, I was Daddy's Little Girl, from the day I was born until the day he died. I still miss him everyday and will also wish that my boys had gotten a chance to know him. Obviously the pregnancy hormones are making this a bit worse and with the loss of the house now..............well I've done some crying.
Thursday, January 12, 2012
I am so angry..........
I could seriously spit nails! N's gait trainer arrived last Thursday and from then until Tuesday I had him walk in it each day. He walked, with me pushing the gait trainer from behind, but it just didn't seem right. He was walking funny, and seemed frustrated and upset. As each day went by I felt more and more like I was going to win worst mommy of the year and it was only the beginning of January! Something was wrong, and I thought I was doing something wrong. Maybe I wasn't putting him in right, or maybe our house really wasn't going to work for this. So I took the gait trainer to the hospital where we have PT once a week (and it was this PT that ordered the gait trainer) and, almost in tears, explained to her what was going on. She took one look at at it and said, well you aren't doing anything wrong its PUT TOGETHER WRONG!!!
We got N the Snug Seat Gator. When it arrived from the vendor (cuz you know you can't just order directly from the manufacturer, there always has to be a third party involved) the side supports (which are supposed to be at his hips) where placed on top near his chest and the back support was placed below that. So with each step he took his legs where hitting the back support and he couldn't take a full step. On top of that our PT couldn't even really fix it as not only did they put it together wrong but the wrong pieces were used since the back support should have a strap to prevent N from bending over at the waist. Additionally they forgot to give us the allen wrench to fix the handles (granted a somewhat minor issue, but when added to the rest of this debacle just aggravated me more). We tried to make it so that N could use it, utilizing a dish towel and a strap I had gotten to keep him upright in a shopping cart, but it just isn't working. So N can't use his gait trainer until it is fixed, which will hopefully be Monday.
I am just so angry. We waited so long for this thing to come in (for no real reason since it didn't go through insurance) and then when it does come it we have to try to make it work using a dish towel and a random strap???!!!! This is so incredibly ridiculous. The one and only way (for now) my son can walk independently and they can't even be bothered to put it together properly? The worst part is, we don't even know who screwed it up so I am not sure who to really yell at. I can tell you I'll be letting every parent I know with a child who may utilize this type of equipment about this.
We got N the Snug Seat Gator. When it arrived from the vendor (cuz you know you can't just order directly from the manufacturer, there always has to be a third party involved) the side supports (which are supposed to be at his hips) where placed on top near his chest and the back support was placed below that. So with each step he took his legs where hitting the back support and he couldn't take a full step. On top of that our PT couldn't even really fix it as not only did they put it together wrong but the wrong pieces were used since the back support should have a strap to prevent N from bending over at the waist. Additionally they forgot to give us the allen wrench to fix the handles (granted a somewhat minor issue, but when added to the rest of this debacle just aggravated me more). We tried to make it so that N could use it, utilizing a dish towel and a strap I had gotten to keep him upright in a shopping cart, but it just isn't working. So N can't use his gait trainer until it is fixed, which will hopefully be Monday.
I am just so angry. We waited so long for this thing to come in (for no real reason since it didn't go through insurance) and then when it does come it we have to try to make it work using a dish towel and a random strap???!!!! This is so incredibly ridiculous. The one and only way (for now) my son can walk independently and they can't even be bothered to put it together properly? The worst part is, we don't even know who screwed it up so I am not sure who to really yell at. I can tell you I'll be letting every parent I know with a child who may utilize this type of equipment about this.
Friday, January 6, 2012
Happy New Year!
I would love to tell you that my New Year's resolution is to be more consistent with this blog, and I will try, but sometimes even though I have these great ideas in my head for posts, they just don't come out as well as some of the blogs I read. Anyway, it's been over a month since I last posted things have been crazy here and our holiday's were good. Toy's R Us vomited in my living room and I almost had a complete breakdown about where we were going to put all the toys, but other than that we did well. I hope that all of you had a wonderful holiday season as well.
N's gait trainer finally arrived yesterday. We started the process of getting him one back in October and it took forever, and that was without insurance getting involved (no pre-auth needed) which makes me really nervous to think about how long things will take when insurance does need to get involved but I'll leave that panic for another day. N has been using this particular gait trainer (a snugseat Gator) at PT at the hospital once a week since September or so, and he does really well with it there. I've put him in his twice now (as advised for a minimum of 15-30 minutes each day to build up his tolerance) and he just doesn't seem to do as well. I am not sure if I am just not putting him in properly, if its not quite adjusted right yet, or if he just needs to get used to it. Yesterday he did well and, in a really cute and heartwarming moment, Z helped push him as he walked. Today all he really wanted to do was chew on the chest straps (he is working on his canine's) and sit. I removed the sling seat so he wouldn't be tempted and he did it anyway. I think that even though we have been waiting for this and I know it gives him his freedom and will hopefully get him to be able to walk on his own in a few years, it's hard to see him needing a walker to be upright and walking while Z is toddling around. There are times when I feel like I am doing so well, that I've accepted his diagnosis and all that that entails, and then I have days like today were I just wish he could walk like Z. I think that once he figures out how to really use the gait trainer and is walking all over with it, it will be a little easier. But there are still days where I just want to cry, and today was one of those days.
In other news, I am still pregnant and am almost 10 weeks at this point. Things are going well and I will go for my first MFM (high risk doctor) on the 20th. We already saw our OB for the first time and everything is on track.
In the meantime we are desperately trying to figure out what to do about our house. The gait trainer is actually not quite as wide as I thought it would be and it fits (barely) through the two doorways into the kitchen allowing N to do a full lap around the first floor. But he has to angle it perfectly and I don't know if he will be able to do that. Our living room and dining room are both a decent size and hardwood, and the opening between them is slightly bigger than a double doorway (its just a large archway) so that is good and gives him space for now. But we use our living room as a family room, so we have two couches and an entertainment center in there. The dining room is used everyday as although our kitchen is eat-in, its really only that way for two adults and definitely won't fit high chairs too. So while I have the table pushed as far to the side as I can, it still doesn't allow much more than a "passing lane" for N to go through. DH and I had tossed around the idea of switching houses with my MIL, and although she is willing to sell us her house she wants to downsize to a condo or the like (sidenote, I would PAY to see that, she has more crap than anyone else I know and I have no idea what she is going to do with it all) which isn't an option for us right now since like most of you the drop in the housing market puts us *slightly* underwater and in no way allows us to get enough from our house to pay the real estate commission or have money for a down on the next house. Additionally, we have heard that a lot of mortgage companies now want a minimum of 30% down and some want 40% which we quite obviously don't have. (who the hell does?) So now we are contemplating an addition. I am not sure we can actually do it, since we will need a construction loan and I don't know if we will be able to get enough to do what we want. But if we can, I am hoping to make our kitchen a little bigger so that it is eat in, add on a family room and make the 1st floor bathroom big enough for a walk in shower if we are in a place where N needs to be on the first floor completely someday. We currently have a den (we use it as a playroom right now) on the first floor that while not a great size -long but narrow- would work as a bedroom if necessary. (We will also add another bedroom upstairs.) If I can do this, I can then get a lot of furniture out of the living room and dining room, push the table out of the way and give N two pretty decent size rooms to practice walking in. I would love to just pack up and move to either a home that was all on one story or one that had a much more open floor plan and a bedroom already on the first floor, but it doesn't look like that is going to be an option for at least another 5-8 years.
I can't possibly be the only mommy who has worried about making her current home accessible. If we hadn't bought a home prior to getting married/having our boys, we obviously would have bought a totally different house in anticipation of N's (potential) future needs. But we bought this house long before our boys were conceived, so now its a scramble to make it work. What have you done/plan to do? For the mommies whose kids are older, did things turn out like you thought? Or did you need less/more accessibility than you thought? How have you made your home work?
N's gait trainer finally arrived yesterday. We started the process of getting him one back in October and it took forever, and that was without insurance getting involved (no pre-auth needed) which makes me really nervous to think about how long things will take when insurance does need to get involved but I'll leave that panic for another day. N has been using this particular gait trainer (a snugseat Gator) at PT at the hospital once a week since September or so, and he does really well with it there. I've put him in his twice now (as advised for a minimum of 15-30 minutes each day to build up his tolerance) and he just doesn't seem to do as well. I am not sure if I am just not putting him in properly, if its not quite adjusted right yet, or if he just needs to get used to it. Yesterday he did well and, in a really cute and heartwarming moment, Z helped push him as he walked. Today all he really wanted to do was chew on the chest straps (he is working on his canine's) and sit. I removed the sling seat so he wouldn't be tempted and he did it anyway. I think that even though we have been waiting for this and I know it gives him his freedom and will hopefully get him to be able to walk on his own in a few years, it's hard to see him needing a walker to be upright and walking while Z is toddling around. There are times when I feel like I am doing so well, that I've accepted his diagnosis and all that that entails, and then I have days like today were I just wish he could walk like Z. I think that once he figures out how to really use the gait trainer and is walking all over with it, it will be a little easier. But there are still days where I just want to cry, and today was one of those days.
In other news, I am still pregnant and am almost 10 weeks at this point. Things are going well and I will go for my first MFM (high risk doctor) on the 20th. We already saw our OB for the first time and everything is on track.
In the meantime we are desperately trying to figure out what to do about our house. The gait trainer is actually not quite as wide as I thought it would be and it fits (barely) through the two doorways into the kitchen allowing N to do a full lap around the first floor. But he has to angle it perfectly and I don't know if he will be able to do that. Our living room and dining room are both a decent size and hardwood, and the opening between them is slightly bigger than a double doorway (its just a large archway) so that is good and gives him space for now. But we use our living room as a family room, so we have two couches and an entertainment center in there. The dining room is used everyday as although our kitchen is eat-in, its really only that way for two adults and definitely won't fit high chairs too. So while I have the table pushed as far to the side as I can, it still doesn't allow much more than a "passing lane" for N to go through. DH and I had tossed around the idea of switching houses with my MIL, and although she is willing to sell us her house she wants to downsize to a condo or the like (sidenote, I would PAY to see that, she has more crap than anyone else I know and I have no idea what she is going to do with it all) which isn't an option for us right now since like most of you the drop in the housing market puts us *slightly* underwater and in no way allows us to get enough from our house to pay the real estate commission or have money for a down on the next house. Additionally, we have heard that a lot of mortgage companies now want a minimum of 30% down and some want 40% which we quite obviously don't have. (who the hell does?) So now we are contemplating an addition. I am not sure we can actually do it, since we will need a construction loan and I don't know if we will be able to get enough to do what we want. But if we can, I am hoping to make our kitchen a little bigger so that it is eat in, add on a family room and make the 1st floor bathroom big enough for a walk in shower if we are in a place where N needs to be on the first floor completely someday. We currently have a den (we use it as a playroom right now) on the first floor that while not a great size -long but narrow- would work as a bedroom if necessary. (We will also add another bedroom upstairs.) If I can do this, I can then get a lot of furniture out of the living room and dining room, push the table out of the way and give N two pretty decent size rooms to practice walking in. I would love to just pack up and move to either a home that was all on one story or one that had a much more open floor plan and a bedroom already on the first floor, but it doesn't look like that is going to be an option for at least another 5-8 years.
I can't possibly be the only mommy who has worried about making her current home accessible. If we hadn't bought a home prior to getting married/having our boys, we obviously would have bought a totally different house in anticipation of N's (potential) future needs. But we bought this house long before our boys were conceived, so now its a scramble to make it work. What have you done/plan to do? For the mommies whose kids are older, did things turn out like you thought? Or did you need less/more accessibility than you thought? How have you made your home work?
Thursday, December 1, 2011
The results are in!
As of right now we are pregnant. My numbers weren't overwhelming yesterday, so I go back in for another test tomorrow to find out if the number is doubling or not. If it is doubling than we will be scheduled for our first ultrasound, if it isn't then I will most likely discontinue my medications and the cycle will be over. I am trying to stay positive.
In other news I am starting to feel a little down about N's progress again. There are days when I am so able to stay positive on all the progress he has made but then there are times like now where it has been a LONG time since N has done anything "new" physically. He is still working so hard to "military crawl" (using his arms only) but I feel like he has been working on that for months (I think he has actually) and is still going around in a circle. I know I should probably just be thankful that he can move around at all..........but I can see that he is frustrated as he watches Z go wherever, whenever. I hate that for him. I hate CP. Is that weird? That I hate something inanimate? I hate that it forces my son to struggle and work so hard to do even the smallest things. I hate that I look around my house and panic about how we are going to fit a gait trainer and if he will really be able to get any practice or if he will just feel stuck. I am constantly thinking about ways to rearrange our furniture to make it better for him and looking at new houses (which we totally can't afford) that would enable him to have more space.
Its one of those "down" periods. They don't happen as often anymore (a year past our first starting to deal with the reality that N would have CP) but they definitely still happen and seem to occur when the milestones get further apart, and now that we are moving towards the MAJOR milestones (like crawling, pulling to stand, cruising and walking) I think it is going to get harder as these milestones are going to be harder for N to achieve.
Z is still working on walking. He takes 10-15 steps and then just stops. There is a part of me that is starting to get really worried. His MRI was clear and he has hit all milestones (except this one) on schedule for his adjusted age so I am probably just driving myself crazy for no reason. But I worry. I beat myself up and I worry (and of course the pregnancy hormones aren't helping!). I hear so many people tell me, oh just wait till he is running everywhere and you will wonder why you wanted him too! Really? Is that REALLY what you want to say to a mom who has one child who will *hopefully* walk in a few years, and another who is 18 1/2 months old and still isn't walking? Really? I just want to smack them. Maybe YOU aren't happy that you have to chase your child everywhere, but the thought of being able to run after my two babies............well I just want to cry.
In other news I am starting to feel a little down about N's progress again. There are days when I am so able to stay positive on all the progress he has made but then there are times like now where it has been a LONG time since N has done anything "new" physically. He is still working so hard to "military crawl" (using his arms only) but I feel like he has been working on that for months (I think he has actually) and is still going around in a circle. I know I should probably just be thankful that he can move around at all..........but I can see that he is frustrated as he watches Z go wherever, whenever. I hate that for him. I hate CP. Is that weird? That I hate something inanimate? I hate that it forces my son to struggle and work so hard to do even the smallest things. I hate that I look around my house and panic about how we are going to fit a gait trainer and if he will really be able to get any practice or if he will just feel stuck. I am constantly thinking about ways to rearrange our furniture to make it better for him and looking at new houses (which we totally can't afford) that would enable him to have more space.
Its one of those "down" periods. They don't happen as often anymore (a year past our first starting to deal with the reality that N would have CP) but they definitely still happen and seem to occur when the milestones get further apart, and now that we are moving towards the MAJOR milestones (like crawling, pulling to stand, cruising and walking) I think it is going to get harder as these milestones are going to be harder for N to achieve.
Z is still working on walking. He takes 10-15 steps and then just stops. There is a part of me that is starting to get really worried. His MRI was clear and he has hit all milestones (except this one) on schedule for his adjusted age so I am probably just driving myself crazy for no reason. But I worry. I beat myself up and I worry (and of course the pregnancy hormones aren't helping!). I hear so many people tell me, oh just wait till he is running everywhere and you will wonder why you wanted him too! Really? Is that REALLY what you want to say to a mom who has one child who will *hopefully* walk in a few years, and another who is 18 1/2 months old and still isn't walking? Really? I just want to smack them. Maybe YOU aren't happy that you have to chase your child everywhere, but the thought of being able to run after my two babies............well I just want to cry.
Monday, November 21, 2011
One
We have completed our IVF cycle. Retrieval was last Monday and they got 13 eggs. The following day we were advised that of those 13 only 11 were mature and all 11 fertilized. I was so very excited. 11 fertilized? We would definitely get some good ones and maybe even have some to freeze.
On Saturday we did transfer. We had already decided to only transfer one and so the embryologist came to talk to us and told us that we had one blast, three that were close to blast and the rest weren't doing that well. He advised us that in his experience we probably wouldn't have anything left to freeze. I was so disappointed. We put our one blast in and headed back home where I stayed on bed rest for 48 hours (a very difficult thing to do with two little men who are used to having their mommy with them all the time!). I am trying to remain optimistic as I know it only takes one and a blast has a pretty good chance of taking. But I am still feeling a little down. I mean we had 11 (!!) and only 1 made it to blast and with nothing frozen, if this cycle doesn't work it means we start over from scratch. While once again I don't think cycling was difficult for me, it was definitely harder this time around with the boys.
So now we wait. Last time I got a BFP at 7 days past a 5 day transfer (7dp5dt) (essentially 12 days past "ovulation"). So of course Ill start testing later this week and maybe get a wonderful Thanksgiving surprise.
My boys are doing well, although they missed having their mommy with them all weekend. We are working so hard with N to get him crawling. He wants to be mobil so badly, and I am hopeful that by Christmas he will be able to do a nice army crawl. Z is still taking steps here and there but seems to be doing better with the inserts in his shoes. They finally arrived last Saturday and we did a breaking in schedule and now he wears them during all waking hours. Each day he seems to take steps a little bit more often. I am so hopeful that a few more weeks of practice and he will be walking and then running everywhere!
We also got good news (I think) on the gait trainer front. We got a letter from the vendor which seems to say (in my totally inexperienced opinion) that there is no pre-certification for the gait trainer required by our insurance company and it should be 100% covered, however they have no way to guarantee that until they order it and submit the bill and of course once its ordered its not returnable so essentially we had to sign that if for some reason insurance doesn't cover it, we will. (You can bet I'll fight tooth and nail to get it paid for if for some reason insurance decides to screw us). So we signed the paperwork and sent it back today and hopefully we will be getting the gait trainer soon. Not sure how long it takes to arrive, but I'll still tell myself in time for Christmas and anything sooner will just be a bonus.
I have this picture in my head of my two little boys standing all on their "own" decorating the Christmas tree. Hopefully I can get an actual picture of this in just a few weeks.
On Saturday we did transfer. We had already decided to only transfer one and so the embryologist came to talk to us and told us that we had one blast, three that were close to blast and the rest weren't doing that well. He advised us that in his experience we probably wouldn't have anything left to freeze. I was so disappointed. We put our one blast in and headed back home where I stayed on bed rest for 48 hours (a very difficult thing to do with two little men who are used to having their mommy with them all the time!). I am trying to remain optimistic as I know it only takes one and a blast has a pretty good chance of taking. But I am still feeling a little down. I mean we had 11 (!!) and only 1 made it to blast and with nothing frozen, if this cycle doesn't work it means we start over from scratch. While once again I don't think cycling was difficult for me, it was definitely harder this time around with the boys.
So now we wait. Last time I got a BFP at 7 days past a 5 day transfer (7dp5dt) (essentially 12 days past "ovulation"). So of course Ill start testing later this week and maybe get a wonderful Thanksgiving surprise.
My boys are doing well, although they missed having their mommy with them all weekend. We are working so hard with N to get him crawling. He wants to be mobil so badly, and I am hopeful that by Christmas he will be able to do a nice army crawl. Z is still taking steps here and there but seems to be doing better with the inserts in his shoes. They finally arrived last Saturday and we did a breaking in schedule and now he wears them during all waking hours. Each day he seems to take steps a little bit more often. I am so hopeful that a few more weeks of practice and he will be walking and then running everywhere!
We also got good news (I think) on the gait trainer front. We got a letter from the vendor which seems to say (in my totally inexperienced opinion) that there is no pre-certification for the gait trainer required by our insurance company and it should be 100% covered, however they have no way to guarantee that until they order it and submit the bill and of course once its ordered its not returnable so essentially we had to sign that if for some reason insurance doesn't cover it, we will. (You can bet I'll fight tooth and nail to get it paid for if for some reason insurance decides to screw us). So we signed the paperwork and sent it back today and hopefully we will be getting the gait trainer soon. Not sure how long it takes to arrive, but I'll still tell myself in time for Christmas and anything sooner will just be a bonus.
I have this picture in my head of my two little boys standing all on their "own" decorating the Christmas tree. Hopefully I can get an actual picture of this in just a few weeks.
Wednesday, November 9, 2011
Underwhelming........
So my response to the stim medications has thus far been underwhelming at best. I have only 9 measurable follicles (potential eggs) as of today (after 5 days of stimming) and my lining is only at a 3 (my lining is at a 2 during my period, so that will give you an idea for a baby to implant it needs to be at about an 8). So I am feeling a little down about it. In looking back at the cycle that gave us N and Z (after the same amount of days stimming) I had 15 measurable follicles and my lining was at an 8. They increased my dose on Monday when I had only 5 measurable follicles and lining at a 3. I go back again on Friday and I am hopeful that there will be a better response. Not that 9 eggs would be horrible, but I would prefer more. With our last cycle we had 14 eggs recovered, 12 were mature, but only 7 fertilized. Of those 7 only 1 made it to blast (N) the other embryo was of a lower grade (no idea what grade) and was "eh" (Z). So obviously I know that it doesn't take a perfect embryo to turn into a baby.........but knowing that only 2 of ours made it last time makes me worry that with only 9 (thus far) we might have a problem come transfer day. So I am keeping my fingers crossed, relying upon my Cysters to keep me calm and, hoping I get a pleasant surprise on Friday.
N had a joint therapy session with his OT and PT today and they worked on crawling with him. He so wants to crawl! He has been moving himself around in a circle for a few weeks now and I know that at some point it is going to click that he can go in a straight line too. I cannot wait for that day! The picture in my mind of both of my boys being able to go where they want and do what they want brings tears to my eyes. I always feel awful that Z can follow me in the kitchen, open cabinets to pull stuff out and just generally assert his independence whereas N is just stuck where I put him. (Well he can roll places and move around in a circle, but it's not the same). I feel like N gets left out and it bothers me, a lot.
I ordered (upon the recommendation of Z's PT) orthotics for Z. They are from this site www.cascadedafo.com and we got him the "cricket". They aren't custom orthotics but Z's PT feels that these might be just what Z needs to finally take off walking. I hope so. I would love to be able to take my boys out for a walk and let them both walk. But until Z is walking on his own, I can't because N needs both my hands for support. Of course once N's gait trainer arrives we will really be able to go for walks!
N had a joint therapy session with his OT and PT today and they worked on crawling with him. He so wants to crawl! He has been moving himself around in a circle for a few weeks now and I know that at some point it is going to click that he can go in a straight line too. I cannot wait for that day! The picture in my mind of both of my boys being able to go where they want and do what they want brings tears to my eyes. I always feel awful that Z can follow me in the kitchen, open cabinets to pull stuff out and just generally assert his independence whereas N is just stuck where I put him. (Well he can roll places and move around in a circle, but it's not the same). I feel like N gets left out and it bothers me, a lot.
I ordered (upon the recommendation of Z's PT) orthotics for Z. They are from this site www.cascadedafo.com and we got him the "cricket". They aren't custom orthotics but Z's PT feels that these might be just what Z needs to finally take off walking. I hope so. I would love to be able to take my boys out for a walk and let them both walk. But until Z is walking on his own, I can't because N needs both my hands for support. Of course once N's gait trainer arrives we will really be able to go for walks!
Friday, November 4, 2011
Moving Forward
Tonight I FINALLY get to start stims! I am very excited about that. As referenced previously, because my DH will be traveling overseas next week I needed to stay on the Lupron (suppression medication) for an extra week but now I can finally start to stim and then we will hopefully be pregnant again. I went in for the always wonderful wakeup of bloodwork and transvaginal ultrasound this morning to make sure everything was good to go, and now I wait for a phone call from the doctor giving me my instructions for tonight's stimulation injection. I have also started drinking my gatorade so as to prevent OHSS. (very painful, very bad result of over stimulating).
We also had an appointment with the developmental pediatrician today and for once I didn't leave the appointment crying. She was so impressed with how well N is doing and commented that she has hopes he will walk. I think at the last two appointments he was so young that it was really hard for her to have a good sense of what he could/would do and I picked up on that, she never said anything depressing or horrible to hear, but I think I just felt that vibe. Not that it has prevented me from being positive about N's progress and potential, but for that day and a few days after the appointment it was really hard for me. She did feel that N is most likely a Spastic Quad, meaning that all four of his limbs are affected. I am not entirely sure that this is an accurate diagnosis, but I don't know if there is a true accurate diagnosis for N. This is because his legs are definitely affect, his left arm is affected, but his right isn't and his face doesn't seem to be either. Not that any of it really matters, it doesn't change our therapies, goals, or how we feel so in the end I don't care what label they give him. He really showed off for the doctor today with his "ring" sitting (ie sitting with his feet touching as opposed to legs straight out in front of him), moving around in a circle on his belly, rolling, and putting blocks into a cup and taking them out again.
Z did really well too and the only comment she had about him was that his fine motor skills seemed to be lagging again and perhaps OT should be restarted. I'll talk to N's OT (who also used to treat Z until it was determined he no longer qualified b/c he had caught up) and see what she thinks. But I do wonder if some of it isn't my fault/lack of clarity on when things should be done. For example, the doctor handed Z a crayon today to ask him to draw. He made a mark on the paper, but he had NEVER held a crayon before. I had read that crayons/coloring was a skill/activity for children around 18 months, my boys are 17 1/2 months chronologically but only 15 1/2 months adjusted age. So I haven't given them crayons yet (N exhibited exactly why when it was his turn and the crayon went right to his mouth, he is working on molars!). Perhaps I should have, but I really wish there was some clarity on stuff like that so that I was prepared!
So I will be getting some crayons and paper I suppose so that the boys can learn to draw. DH and I stopped at the toy store on the way home from the doctor (where I forgot to get crayons!) and picked up some of those wooden puzzles with the "handle" on the pieces. I figured those would be good for fine motor skills as well. I would happily take suggestions on other activities that your child is doing (or was doing) around 15-18 months. Did you introduce crayons? Playdough? What other things did you utilize to work on fine motor skills? Of course I will ask the OT for some suggestions as well, but I find that other mommy's tend to have some really great ideas and I will take all the help I can get!
We also had an appointment with the developmental pediatrician today and for once I didn't leave the appointment crying. She was so impressed with how well N is doing and commented that she has hopes he will walk. I think at the last two appointments he was so young that it was really hard for her to have a good sense of what he could/would do and I picked up on that, she never said anything depressing or horrible to hear, but I think I just felt that vibe. Not that it has prevented me from being positive about N's progress and potential, but for that day and a few days after the appointment it was really hard for me. She did feel that N is most likely a Spastic Quad, meaning that all four of his limbs are affected. I am not entirely sure that this is an accurate diagnosis, but I don't know if there is a true accurate diagnosis for N. This is because his legs are definitely affect, his left arm is affected, but his right isn't and his face doesn't seem to be either. Not that any of it really matters, it doesn't change our therapies, goals, or how we feel so in the end I don't care what label they give him. He really showed off for the doctor today with his "ring" sitting (ie sitting with his feet touching as opposed to legs straight out in front of him), moving around in a circle on his belly, rolling, and putting blocks into a cup and taking them out again.
Z did really well too and the only comment she had about him was that his fine motor skills seemed to be lagging again and perhaps OT should be restarted. I'll talk to N's OT (who also used to treat Z until it was determined he no longer qualified b/c he had caught up) and see what she thinks. But I do wonder if some of it isn't my fault/lack of clarity on when things should be done. For example, the doctor handed Z a crayon today to ask him to draw. He made a mark on the paper, but he had NEVER held a crayon before. I had read that crayons/coloring was a skill/activity for children around 18 months, my boys are 17 1/2 months chronologically but only 15 1/2 months adjusted age. So I haven't given them crayons yet (N exhibited exactly why when it was his turn and the crayon went right to his mouth, he is working on molars!). Perhaps I should have, but I really wish there was some clarity on stuff like that so that I was prepared!
So I will be getting some crayons and paper I suppose so that the boys can learn to draw. DH and I stopped at the toy store on the way home from the doctor (where I forgot to get crayons!) and picked up some of those wooden puzzles with the "handle" on the pieces. I figured those would be good for fine motor skills as well. I would happily take suggestions on other activities that your child is doing (or was doing) around 15-18 months. Did you introduce crayons? Playdough? What other things did you utilize to work on fine motor skills? Of course I will ask the OT for some suggestions as well, but I find that other mommy's tend to have some really great ideas and I will take all the help I can get!
Saturday, October 22, 2011
hanging in
It's day 9 of Lupron and so far, not too bad. Lupron is the medication used in IVF to shut your system down. Think menopause, that's kind of what it does hot flashes and all! I go in Monday for bloodwork and ultrasound to ensure that my body is totally shut down so that we can start stimming. Either way I won't be starting stimming until November 4th as DH is out of town that week so if I started stimming on 10/28 we would risk DH not being here for the retrieval day and that is not an option. I have had a few hot flashes and a few flashes of pain in my head (not lasting long enough to count as a headache) and I am a little more tired than usual.
My boys are doing well. Z has learned to climb the stairs. Its a double edged skill as it will be great when I am stimming and don't want to carry my almost 23 pound toddler up the stairs, but on the other hand I have to remember to put the gate across or he scoots himself up if I turn my back for just a second!
N is trying so hard to crawl on his belly. He moves his legs a little but doesn't quite have the coordination down yet to move the leg and pull to move himself. He is really close though and I am hoping by Thanksgiving that he will be able to military crawl to get himself around.
I have been thinking a lot about our home and how to make it work for N. We live in a two story home that while not tiny, isn't what I would call large. Its a good size for us, and I love this house, but I worry about how N will get around and how to make it accessible for him. Obviously he is working hard and we are hopeful that he will eventually walk either on his own, or with a walker/crutches/etc. But we know he will start with a gait trainer, in fact its in the process of being ordered. Our living room and dining room are essentially open to each other (there is a doorway but its a huge archway as opposed to a door) but the doorways into the kitchen are a big problem. The one doorway is narrower than all our other doorways, and the other doorway is wide enough but as soon as you get through it has a radiator and two counters. Then there is the playroom we have for them, which has a step down into it and its a long room but narrow. We had our contractor here last week to give us some options. I felt a little better afterwords as he said he could widen the narrow doorway, and make us a ramp into the playroom if we want it. DH and I have also started looking at smaller entertainment centers to hopefully allow more space to angle himself through the doorway well, and we are going to get rid of the kitchen table in our kitchen and get a small cart/island instead (we don't eat in there anyway as it was fine for two people, not so much two people and two highchairs!). As for the playroom, I don't know that the room itself will work with the gait trainer so I think we will pass on the ramp for now and let him play in the playroom while not in the gait trainer.
Ultimately we want to add on to our home adding a family room, making our kitchen bigger and adding another bedroom on the 2nd floor. I would love to move to a one story house, but as many people are, we are *slightly* underwater here and while I think we could get enough to cover our mortgage, it wouldn't cover real estate fees, and would give us nothing as a down payment for another home. (Considering I've heard some mortgage companies are looking for 30-40% down now..........yea, who has that kind of money???). I am trying to make the best of it, but there are days I just break down and cry. I want our home to be a safe and secure place for all my children and I worry that N will feel limited or left out because we have a two story home and we don't know yet if he will be able to climb those stairs. Can you tell I worry a lot? I think it comes naturally as soon as you get pregnant, and it doubles in intensity when you have a child with special needs.
My boys are doing well. Z has learned to climb the stairs. Its a double edged skill as it will be great when I am stimming and don't want to carry my almost 23 pound toddler up the stairs, but on the other hand I have to remember to put the gate across or he scoots himself up if I turn my back for just a second!
N is trying so hard to crawl on his belly. He moves his legs a little but doesn't quite have the coordination down yet to move the leg and pull to move himself. He is really close though and I am hoping by Thanksgiving that he will be able to military crawl to get himself around.
I have been thinking a lot about our home and how to make it work for N. We live in a two story home that while not tiny, isn't what I would call large. Its a good size for us, and I love this house, but I worry about how N will get around and how to make it accessible for him. Obviously he is working hard and we are hopeful that he will eventually walk either on his own, or with a walker/crutches/etc. But we know he will start with a gait trainer, in fact its in the process of being ordered. Our living room and dining room are essentially open to each other (there is a doorway but its a huge archway as opposed to a door) but the doorways into the kitchen are a big problem. The one doorway is narrower than all our other doorways, and the other doorway is wide enough but as soon as you get through it has a radiator and two counters. Then there is the playroom we have for them, which has a step down into it and its a long room but narrow. We had our contractor here last week to give us some options. I felt a little better afterwords as he said he could widen the narrow doorway, and make us a ramp into the playroom if we want it. DH and I have also started looking at smaller entertainment centers to hopefully allow more space to angle himself through the doorway well, and we are going to get rid of the kitchen table in our kitchen and get a small cart/island instead (we don't eat in there anyway as it was fine for two people, not so much two people and two highchairs!). As for the playroom, I don't know that the room itself will work with the gait trainer so I think we will pass on the ramp for now and let him play in the playroom while not in the gait trainer.
Ultimately we want to add on to our home adding a family room, making our kitchen bigger and adding another bedroom on the 2nd floor. I would love to move to a one story house, but as many people are, we are *slightly* underwater here and while I think we could get enough to cover our mortgage, it wouldn't cover real estate fees, and would give us nothing as a down payment for another home. (Considering I've heard some mortgage companies are looking for 30-40% down now..........yea, who has that kind of money???). I am trying to make the best of it, but there are days I just break down and cry. I want our home to be a safe and secure place for all my children and I worry that N will feel limited or left out because we have a two story home and we don't know yet if he will be able to climb those stairs. Can you tell I worry a lot? I think it comes naturally as soon as you get pregnant, and it doubles in intensity when you have a child with special needs.
Tuesday, October 18, 2011
Into the fire........
Sorry its been so very long, I think about things I want to post about and then forget to post! I would blame mommy brain......but that seems cliche so I won't!
A lot of things have been happening here. Z is still not walking, however he has taken a few steps here and there and we are hopeful that one of these days he is just going to take off. I am sure that once he has taken off, I will regret those words but in the meantime we are hopeful. I had thought he had until 18 months to start walking, but apparently its really only 15 months before they get worried and we have hit the 15 month mark. Because you know, this mommy didn't have enough to worry about.
N is doing really well. His hands seem to be loosening up a bit more and only seem slightly involved at this point. We have been seeing an oral/motor specialist for a few months now and N is finally able to drink from a straw and now has the independence to drink all by himself. It is so wonderful to see the look of pride and satisfaction on his face as he drinks his milk all by himself! I am also hopeful it will allow him to gain some more weight. Z weighs 4 pounds more than N and I think that has a lot to do with their milk intake since they both eat and feed themselves the same foods. We are also in the process of ordering his gait trainer. He has been doing really well with the one they have at the hospital where he receives PT each week. We had tried him in it in June and he just wasn't quite ready, but two weeks ago we tried it again and he just took off. I was so very proud of him and he was most definitely proud of himself. I don't expect to to receive it much before Christmas but the fact that the process has been started and my little boy will finally be able to move around by himself in a method other than rolling is so very thrilling. We are still working on crawling with him, and I am hopeful that maybe by the end of the year he will be able to at least military crawl. I hate it that Z can crawl into the kitchen or wherever else I am if he wants to and be with me, or go into the cabinets, or just have some freedom and N is stuck wherever we put him. Yes he can roll and it has given him some sense of freedom and mobility, but it's just not the same. I want my little boy to crawl...........amazing how things that most parents think are "little" mean the world to a parent of a child with special needs.
I finally got Early Intervention to give us speech therapy. It has taken a lot of pushing, but both N and Z were evaluated last month and both deemed to be (shocking to no one in this household I can assure you) more than 50% delayed . So both boys will now get speech therapy one time per week. I really wanted twice per week, but the compromise was once a week for now and in three months we would sit down again and re-evaluate how things are going and hopefully add in that second weekly session that I think they need. It probably seems crazy to be getting speech therapy for two 17 month olds (15 months adjusted) but my boys haven't said "mama" they haven't said "dada", they don't say much of anything. Sure they babble and make noise, but they don't talk, they don't say words. I don't understand the concept of "well lets wait until they turn 2 and see how its going". Why? Why in gods name would we wait until they are two to give them any assistance in speech? If most children say a few words, or at the very least "mama" or "dada" by the time they are 12 months old, why would you wait another 12 months to intervene? It makes no sense to me at all, feelings I made very clear to our case manager. I don't think she likes me very much, but I am looking out for the best interests of my kids not to make more friends.
And in other news............we have started another round of IVF! Yup, we are totally crazy. No, we really aren't but I am quite sure that most people will think we are. We have always wanted 3 or 4 children and although we were planning on waiting another year there are some things that have required otherwise. We have wonderful insurance coverage through DH's employer, coverage that allows us IVF coverage. Unfortunately this coverage only gives us 60 sessions per year of therapy (combined speech/OT/PT). Now, that doesn't matter much right now because almost all of N's therapy is done through early intervention. Of course without the session limit we would be able to submit the co-pay we make for reimbursement, but its a manageable monthly payment and so we are doing ok without that. However, once N turns 3 he graduates into the school program, and while they therapy will then be done through the school, I'm not sure if it will be enough and I may want to get him more private therapy. In order to do that, we would need to change the plan we currently have and the plan we would need to change to does not have any IVF coverage and we would have to make that switch next November. Seems like a long way away, but it's really not not in infertility world at least. So I started my lupron shots last Friday and we are hoping for a retrieval date of November 14th. It still kills me some days the amount of people and decisions required for DH and I to decide to have another baby, something that really should be just a decision between DH and I. But, I try to accept that it is our life and on most days I do ok with it.
Life is never dull in this household!
A lot of things have been happening here. Z is still not walking, however he has taken a few steps here and there and we are hopeful that one of these days he is just going to take off. I am sure that once he has taken off, I will regret those words but in the meantime we are hopeful. I had thought he had until 18 months to start walking, but apparently its really only 15 months before they get worried and we have hit the 15 month mark. Because you know, this mommy didn't have enough to worry about.
N is doing really well. His hands seem to be loosening up a bit more and only seem slightly involved at this point. We have been seeing an oral/motor specialist for a few months now and N is finally able to drink from a straw and now has the independence to drink all by himself. It is so wonderful to see the look of pride and satisfaction on his face as he drinks his milk all by himself! I am also hopeful it will allow him to gain some more weight. Z weighs 4 pounds more than N and I think that has a lot to do with their milk intake since they both eat and feed themselves the same foods. We are also in the process of ordering his gait trainer. He has been doing really well with the one they have at the hospital where he receives PT each week. We had tried him in it in June and he just wasn't quite ready, but two weeks ago we tried it again and he just took off. I was so very proud of him and he was most definitely proud of himself. I don't expect to to receive it much before Christmas but the fact that the process has been started and my little boy will finally be able to move around by himself in a method other than rolling is so very thrilling. We are still working on crawling with him, and I am hopeful that maybe by the end of the year he will be able to at least military crawl. I hate it that Z can crawl into the kitchen or wherever else I am if he wants to and be with me, or go into the cabinets, or just have some freedom and N is stuck wherever we put him. Yes he can roll and it has given him some sense of freedom and mobility, but it's just not the same. I want my little boy to crawl...........amazing how things that most parents think are "little" mean the world to a parent of a child with special needs.
I finally got Early Intervention to give us speech therapy. It has taken a lot of pushing, but both N and Z were evaluated last month and both deemed to be (shocking to no one in this household I can assure you) more than 50% delayed . So both boys will now get speech therapy one time per week. I really wanted twice per week, but the compromise was once a week for now and in three months we would sit down again and re-evaluate how things are going and hopefully add in that second weekly session that I think they need. It probably seems crazy to be getting speech therapy for two 17 month olds (15 months adjusted) but my boys haven't said "mama" they haven't said "dada", they don't say much of anything. Sure they babble and make noise, but they don't talk, they don't say words. I don't understand the concept of "well lets wait until they turn 2 and see how its going". Why? Why in gods name would we wait until they are two to give them any assistance in speech? If most children say a few words, or at the very least "mama" or "dada" by the time they are 12 months old, why would you wait another 12 months to intervene? It makes no sense to me at all, feelings I made very clear to our case manager. I don't think she likes me very much, but I am looking out for the best interests of my kids not to make more friends.
And in other news............we have started another round of IVF! Yup, we are totally crazy. No, we really aren't but I am quite sure that most people will think we are. We have always wanted 3 or 4 children and although we were planning on waiting another year there are some things that have required otherwise. We have wonderful insurance coverage through DH's employer, coverage that allows us IVF coverage. Unfortunately this coverage only gives us 60 sessions per year of therapy (combined speech/OT/PT). Now, that doesn't matter much right now because almost all of N's therapy is done through early intervention. Of course without the session limit we would be able to submit the co-pay we make for reimbursement, but its a manageable monthly payment and so we are doing ok without that. However, once N turns 3 he graduates into the school program, and while they therapy will then be done through the school, I'm not sure if it will be enough and I may want to get him more private therapy. In order to do that, we would need to change the plan we currently have and the plan we would need to change to does not have any IVF coverage and we would have to make that switch next November. Seems like a long way away, but it's really not not in infertility world at least. So I started my lupron shots last Friday and we are hoping for a retrieval date of November 14th. It still kills me some days the amount of people and decisions required for DH and I to decide to have another baby, something that really should be just a decision between DH and I. But, I try to accept that it is our life and on most days I do ok with it.
Life is never dull in this household!
Friday, August 12, 2011
The Green Eyed Monster
I would like to think that I could simply be happy for people who "just get pregnant" and then I hear about a friend who is and the jealousy starts. I have no right to be jealous, wishing for what someone else has doesn't mean just the good parts of their life but the bad too, but when I hear about someone who is able to have sex with their husband and get pregnant, well that's hard for me.
I would love to be able to get pregnant the old fashioned way. Some romance, love, and maybe even an orgasm, lol. Instead I get needles, doctors, and the ever sexy trans vaginal ultrasound four to five times a week. (Well when we are cycling that is, we aren't at present and don't plan too until next summer at least) Having to use fertility drugs, doctors, and procedures takes all the love and romance out of having a baby. Yes you still (hopefully) get a baby - or two- out of the deal, but it's just not the same. You can't just "decide" to have another baby. It involves testing, blood work (seriously they take vials and vials of blood), ultrasounds, more testing, meetings with the doctor, and the every wonderful "sample in a cup" provided by your DH. I envy the people who can say let's have another baby and have sex to do it...........on the other hand in my house sex is just for fun, so I guess there are benefits to that!
I would love to be able to get pregnant the old fashioned way. Some romance, love, and maybe even an orgasm, lol. Instead I get needles, doctors, and the ever sexy trans vaginal ultrasound four to five times a week. (Well when we are cycling that is, we aren't at present and don't plan too until next summer at least) Having to use fertility drugs, doctors, and procedures takes all the love and romance out of having a baby. Yes you still (hopefully) get a baby - or two- out of the deal, but it's just not the same. You can't just "decide" to have another baby. It involves testing, blood work (seriously they take vials and vials of blood), ultrasounds, more testing, meetings with the doctor, and the every wonderful "sample in a cup" provided by your DH. I envy the people who can say let's have another baby and have sex to do it...........on the other hand in my house sex is just for fun, so I guess there are benefits to that!
Wednesday, August 3, 2011
Annual meeting
Today was the annual meeting for the boys Early Intervention therapies. All in all it was a good meeting.
N was increased to OT 6 times per month (he was at once a week), his PT remained the same (twice a week), DI remained the same (once a week) and his DI is doing the paperwork to request a speech evaluation.
Z's OT was eliminated as he has caught up to his adjusted age. He will continue with DI once a week, and the DI is doing the paperwork for a speech evaluation for him as well.
I am a little perturbed that its such a hassle to get a speech evaluation. I mean really, my son's are (almost) 13 months adjusted, (almost) 15 months actual and do not say "mama" or "dada" or any other words at all. Obviously with N's CP he is at higher risk for speech issues. Everyone's automatic response is "DI". Well, DI is NOT speech. But because it is cheaper than paying for a speech therapist its their automatic answer until a child is 2 years old. My service coordinator was a little argumentative with me, until ALL of the therapists joined me in saying that both boys need an evaluation. (We really have great therapists).
I just don't get it. Are that many people requesting speech that they have to be so hard assed about having someone do an evaluation? Its not like my boys are 8 months old and not talking. Or a year old and not speaking in full sentences. They aren't even saying "mama" or "dada", and I'm not even looking for them to call me "mama" or my husband "dada" just for them to say the word. And its just an evaluation! We aren't even talking about actual speech therapy yet.
For N, because he was evaluated by an oral motor/speech pathologist in June, we have to wait until September 3rd to submit the paperwork again. The evaluation was for eating issues (although she touched on speech as well) as we were concerned about his sometimes not getting his food in his mouth. We weren't sure if it was due to a weakness in his mouth/tongue or if it was a limitation with his hands/arms. Apparently once a particular discipline has evaluated a child, they cannot do an evaluation of the same discipline for three months. As for Z, we can submit his paperwork anytime. So his DI will be working on the paperwork and hopefully within a month or so an evaluation will be approved and we will have him evaluated.
Sometimes though, I just want to scream. I do everything I can for my boys, we schedule every therapy that's recommended and work hard at the homework we are given. Why exactly is it so difficult to get them the things that they need?
N was increased to OT 6 times per month (he was at once a week), his PT remained the same (twice a week), DI remained the same (once a week) and his DI is doing the paperwork to request a speech evaluation.
Z's OT was eliminated as he has caught up to his adjusted age. He will continue with DI once a week, and the DI is doing the paperwork for a speech evaluation for him as well.
I am a little perturbed that its such a hassle to get a speech evaluation. I mean really, my son's are (almost) 13 months adjusted, (almost) 15 months actual and do not say "mama" or "dada" or any other words at all. Obviously with N's CP he is at higher risk for speech issues. Everyone's automatic response is "DI". Well, DI is NOT speech. But because it is cheaper than paying for a speech therapist its their automatic answer until a child is 2 years old. My service coordinator was a little argumentative with me, until ALL of the therapists joined me in saying that both boys need an evaluation. (We really have great therapists).
I just don't get it. Are that many people requesting speech that they have to be so hard assed about having someone do an evaluation? Its not like my boys are 8 months old and not talking. Or a year old and not speaking in full sentences. They aren't even saying "mama" or "dada", and I'm not even looking for them to call me "mama" or my husband "dada" just for them to say the word. And its just an evaluation! We aren't even talking about actual speech therapy yet.
For N, because he was evaluated by an oral motor/speech pathologist in June, we have to wait until September 3rd to submit the paperwork again. The evaluation was for eating issues (although she touched on speech as well) as we were concerned about his sometimes not getting his food in his mouth. We weren't sure if it was due to a weakness in his mouth/tongue or if it was a limitation with his hands/arms. Apparently once a particular discipline has evaluated a child, they cannot do an evaluation of the same discipline for three months. As for Z, we can submit his paperwork anytime. So his DI will be working on the paperwork and hopefully within a month or so an evaluation will be approved and we will have him evaluated.
Sometimes though, I just want to scream. I do everything I can for my boys, we schedule every therapy that's recommended and work hard at the homework we are given. Why exactly is it so difficult to get them the things that they need?
Tuesday, July 26, 2011
Call me crazy.......
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!
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!
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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