I love my boys' OT/PT/SLP place. For the uninitiated OT: Occupational therapy, PT: Physical therapy and SLP: speech language pathology. I love these women and think that they deserve so much more credit, rewards and acknowledgment than they get.
Today, after DW's OT and JD's OT/SLP session, the OTs came out to talk to me. Telling me that I need to start up brushing again, something that in the chaos of my life after JD was born, I'd kind of just phased out. This time I need to do it for both boys. Ideally she would like every couple of hours, which is where we were before but, as there are two of them, we homeschool and it's crazy, so she requested that it get done at least before every meal.
Ok, alright, I'm doing the schedule for the start of our upcoming school year anyway, I can work this in. Just need to remember that JD can only tolerate it over his clothes except on his feet. DW can do it bare armed, legged and back but, once you remove his braces, he has to have his socks on.....ok, mental note made.
She then said, as if it is nothing in addition to all that we've talked about (and it's not all noted here), back to joint compression for both boys, how many times a day I managed to forget to ask, though I know it is probably a few times a day as it was before. Another mental note made.
DW's OT comes out and hands me a paper. Both OTs have noticed that he was chewing on his fingers finally. Even though I have mentioned that he will chew them until they bleed. I explained that I had bought a bunch of chewies from a therapy shop online but, suddenly he's stopped using them. She tells me that this is a list of items that may help with his oral issues.
I got home and read the list and almost died laughing. Most everything on there he will not touch, use or smell! :D Out of at least 30 items on that list, it came down to pickles, lemon drops and gummy worms & bears. These are the only ones I can easily see him chewing on. Even the lemon drops are pushing it, I know he will surely suck on them but, biting into a hard thing, so far out of his comfort zone. :S
My only hope is that I've spent the better part of 2 weeks now convincing him to try bubble gum. He's still on the fence about it but, I know if I buy some and have it on hand now, he might decide to give it a go.
So, now I have calendar in every room of the house, one on my computer and have to buy a personal one now too. With notes for 3+ appts a week, therapies that need to be done daily, regular scheduled OT stuff that we do at home, like bed jumping, couch to crash pad, etc. homeschool schedule, other doc appts, etc. Notes on every calendar for things from therapies to be done at home to grocery lists - including the suggested items that came on the list, allergy free foods, etc. It might be overkill to some but, when you're life is as crazy as this one is, there is no lengths I won't go to, to be prepared! :D
I've decided that now I need a chauffeur and a secretary! :D
Wednesday, August 10, 2011
Friday, July 29, 2011
A Sense of Humor Can Always Save the Day!
So the truth is, that despite the emotionally heavy posts I sometimes lay down here, I have an extremely humorous personality. Though my sense of humor might be slightly warped! :D I have found humor can be the only way out of what can be a extremely heavy, stressful life.
Today is no exception to that rule!
We went to the audiologist's office, where the normal lady was sick. DW does not do new people so well....needless to say, this is where the whole morning went wrong! :D lol
First this audiologist managed to keep sticking the long, soft probe thing in the wrong place, over and over and over again. Which prompted the screams, tears and panic attack he subsequently had, that I had to talk him down from. He did well though! :)
SPD took over and he couldn't handle being able to hear out of both ears and begged for one aid to be turned down....
On the way out, he begins crying because he wanted to play with the bubbles because "he earned it" by having his ears hurt! lol
So, as I attempted to load the boys up in the van afterwards, DW still crying because he wanted to play with bubbles and then be checked into the playroom on the way out, JD is freaking out because he wanted to push every button on the elevator and then go up stairs to another level of hospital. Here's your daily funny:
As I looked around at the situation, standing outside the back of Boys Town National Research Hospital. A parking lot full of cars and people coming and going, security giving me the evil eye, JD has put himself in timeout IN THE MIDDLE of the parking lot! lol DW is dragging his feet and crying and of course, my frizzy hair is flying with reckless abandon in my face, mocking me.....I took stock of the situation and the stares and then did what any good mother would do!
I sat down in the middle of the parking lot and cried loudly too!! Minus a little bit of the pride I have left, the kids stopped crying and I felt a little better! I don't recommend this for the faint of heart though! I mean I didn't really cry but, mostly pretended to have a loud fit. :D Still, it was highly effective!
What dispelled the tension and frustration for a time though, failed to hold the mood for long. JD's SPD rearing it's ugly head and now the car seat doesn't feel right, he is yelling and screaming. He wants out and he wants out now. DW is yelling because one of his biggest Sensory issues is getting wet and while trying to get everyone in the van it had started to rain and he now feels a wet spot on his shorts......
At a loss and a point where I could again to choose to really cry OR I could choose humor to get through, you bet your bum I chose to find humor. :) I hollered out, "that's it, we're going and we're going now!" Which prompted them to look at me waiting for me to finish. I did not. I simply backed the van up and drove away. Sitting in silence as the boys seemed bewildered and uncomfortable, I flashed back to when I was little and my mother used to do this.
It was always THE worst of days. We were out of control, she would be crying and/or yelling or very close to it. She would either not cry and yell or pull herself together and march us to the car without a word. If we asked where we were going, which I was waiting for DW to do, her reply was, "we're going crazy"! lol So, I waited for DW to ask and my response was the same. Only instead of going to the Dairy Queen, as this was our "going crazy" spot but, my boys are milk protein intolerant, we arrived promptly at Runza, where insanely instead of hitting the drive through, I removed them from the van and marched up to the entrance proudly with the two loves of my life. Where believe it or not, we had an amazing time! :)
Today is no exception to that rule!
We went to the audiologist's office, where the normal lady was sick. DW does not do new people so well....needless to say, this is where the whole morning went wrong! :D lol
First this audiologist managed to keep sticking the long, soft probe thing in the wrong place, over and over and over again. Which prompted the screams, tears and panic attack he subsequently had, that I had to talk him down from. He did well though! :)
SPD took over and he couldn't handle being able to hear out of both ears and begged for one aid to be turned down....
On the way out, he begins crying because he wanted to play with the bubbles because "he earned it" by having his ears hurt! lol
So, as I attempted to load the boys up in the van afterwards, DW still crying because he wanted to play with bubbles and then be checked into the playroom on the way out, JD is freaking out because he wanted to push every button on the elevator and then go up stairs to another level of hospital. Here's your daily funny:
As I looked around at the situation, standing outside the back of Boys Town National Research Hospital. A parking lot full of cars and people coming and going, security giving me the evil eye, JD has put himself in timeout IN THE MIDDLE of the parking lot! lol DW is dragging his feet and crying and of course, my frizzy hair is flying with reckless abandon in my face, mocking me.....I took stock of the situation and the stares and then did what any good mother would do!
I sat down in the middle of the parking lot and cried loudly too!! Minus a little bit of the pride I have left, the kids stopped crying and I felt a little better! I don't recommend this for the faint of heart though! I mean I didn't really cry but, mostly pretended to have a loud fit. :D Still, it was highly effective!
What dispelled the tension and frustration for a time though, failed to hold the mood for long. JD's SPD rearing it's ugly head and now the car seat doesn't feel right, he is yelling and screaming. He wants out and he wants out now. DW is yelling because one of his biggest Sensory issues is getting wet and while trying to get everyone in the van it had started to rain and he now feels a wet spot on his shorts......
At a loss and a point where I could again to choose to really cry OR I could choose humor to get through, you bet your bum I chose to find humor. :) I hollered out, "that's it, we're going and we're going now!" Which prompted them to look at me waiting for me to finish. I did not. I simply backed the van up and drove away. Sitting in silence as the boys seemed bewildered and uncomfortable, I flashed back to when I was little and my mother used to do this.
It was always THE worst of days. We were out of control, she would be crying and/or yelling or very close to it. She would either not cry and yell or pull herself together and march us to the car without a word. If we asked where we were going, which I was waiting for DW to do, her reply was, "we're going crazy"! lol So, I waited for DW to ask and my response was the same. Only instead of going to the Dairy Queen, as this was our "going crazy" spot but, my boys are milk protein intolerant, we arrived promptly at Runza, where insanely instead of hitting the drive through, I removed them from the van and marched up to the entrance proudly with the two loves of my life. Where believe it or not, we had an amazing time! :)
Monday, July 25, 2011
Bring on the funnies!
When you're a special needs momma doing it alone, you need two things: 1) the patience of Job (case in point my youngest just spilled his raspberry cider again and managed to do it on the clean clothes! :S ) and 2) a sense of humor!! :) I learned a long time ago that I could laugh at myself, don't ask how, though it would be quite amusing! :) The truth is, we all need a good laugh, it's extremely beneficial for your physical health as well as your emotional health, and may even uplift your spirit! So here are some of my funny statuses from FB, snippets of conversations I've had and things passed on from friends that make me laugh:
My "status" as of today:
Note to the person who keeps calling: When I don't answer the first two time, please consider that my sorry bum may be literally stuck head first, legs in the air behind a dresser trying to retrieve my sons pumpkin lovey. You can do one of two things: Leave a silly message or send help!! Just stop calling as in my rush to get to the phone, for I what I believe to be something important, I actually wedged myself further behind the dresser....again with legs in the air! Thank you for your time!
(I seriously had visions of the fire department showing up, which in turn would lead to a mysterious video showing up on Youtube! lol)
(I seriously had visions of the fire department showing up, which in turn would lead to a mysterious video showing up on Youtube! lol)
My theme video! :D Which is the song I sing when I'm having a REALLY bad day. Always makes someone laugh, which in turn makes me laugh! :)
A quote from Erma Bombeck:
One thing that they never tell you about child raising is that for the rest of your life, at the drop of a hat, you are expected to know your child's name and how old he or she is.
My response: They seem to take offense when I call them by the wrong name, who knew?! :D
Interesting factoids:
It takes 7 seconds for food to pass from mouth to stomach. A human hair can hold 3kg. The length of a penis is 3x the length of the thumb. The femur is as hard as concrete. A woman's beats faster than a man's. Women blink 2x as much as men. We use 300 muscles just to keep our balance when we stand. A woman has read this entire post. The man is still looking at his thumb.
My son's fav joke, which I chuckle for, in spite of myself: Pizza's are about the delivery. I know, it's bad right? :)
Lastly a snippet of a conversation with one of my fav ladies, us Cancers stick together. :)
L: Did you ever notice that when you walk into spiderwebs you suddenly become a ninja? I soo looked like that this morning.
Me: LOL Ninja does not describe what happens......I look more like a crazy, schizophrenic, cat lady, no one wants to talk to, trying to do some kind of touchdown victory dance! Screaming at thin air, doing some kind of drunk jig, waving my arms around talking and yelling to myself!!! Which then in turn leads to everyone thinking that my son actually got his TS from me because I spend the next hour twitching and jumping at nothing. Convinced that the web is still there and that there were millions of microscopic baby spiders that have made a nest in my hair or clothes.
Alright, I know that not everyone shares my sense of humor but, if one of these has not made you laugh or at least smile.....something is wrong!! ;)
Wednesday, January 19, 2011
Scary times and how we've dug our way out, Part 2
So, one night on the full vitamin regimen with probiotic I didn't think we'd see a single thing.
We were all sitting in the living room playing and watching a little TV when DW comes over and says, "I'm hungry".
We were stunned! I promptly got up and ran to get him food. As I may or may not have mentioned previously, he never knew when he was hungry!! I had to practically argue with him to get him to eat or drink!
The next day, he told us again that he was hungry. He drank a full 8 oz of fluid and by the end of the day, he hit 12 oz.!! This is not a lot in the grand scheme of things but, it was closer to 20oz than he'd been in weeks. For the first time in weeks, we were hopeful that we could keep him from the hospital!
Within four days, the minimum fluid intake was 12 oz. and closing in on 20 oz a day! He went from barely eating enough food to qualify as one meal to closing in on 2 meals a day! To top it off, he quit asking for all his "cheese" foods! Which prompted me to remove milk/casein from his diet on the third day.
That was a rough one because he acted out badly as his little body detoxed for a few days.
After two weeks, he dark purple circles under his eyes, I would come to know as "allergic shiners" disappeared completely! His skin went from grey and very pale white to a soft, porcelain, peach color! He was laughing and smiling! His eye contact which we'd worked so hard to maintain and had promptly disappeared was back!! His meltdowns dropped to almost nothing! He still had them but, they weren't at the level they were before!
Let me explain, if you've not had a Tourette Syndrome child or an ASD child, you'll not understand when I say "rage episode", it does not begin to cover it! There are tiers to rages in TS children or so I am told by the neuro. Rage being the first one, ODD (oppositional defiant disorder) being the second and the third is rare and it is called Explosive Behavior Disorder. This last one is where DW fell into. When he would have an episode, as we call them, he would break windows, tear his bed and bedroom apart, charge the bedroom door over and over again like a linebacker, which would always break where he hinges met the doorframe! This from a little 5 year old! He would hit, kick, bite, scream, etc. Children with EBD grow up to become wife beaters, in jail more often than not for assault! This was the lowest point in this whole journey for me!
So, to see these episodes drop to the level and lower even then when we first added medication to treat them, it was a miracle!
He still tics, especially when stressed or when he can let go at home, after being out are still there but, he went from not being able to finish a sentence, beating himself over and over again to barely having a noticeable tic! I know that there are down times but, even his down times were exhausting to watch! So, to see them just drop so drastically....again all I can say is miraculous!
His anxiety level over his OCD issues and Sensory things, while still there, have also dropped dramatically!
That's not to say that he doesn't have his days or his tics don't explode now and again but, the change simply from the vitamins, which prompted the removal of milk, has made a HUGE change in our lives!
For the first time in years, I have such hope for his future!
We were all sitting in the living room playing and watching a little TV when DW comes over and says, "I'm hungry".
We were stunned! I promptly got up and ran to get him food. As I may or may not have mentioned previously, he never knew when he was hungry!! I had to practically argue with him to get him to eat or drink!
The next day, he told us again that he was hungry. He drank a full 8 oz of fluid and by the end of the day, he hit 12 oz.!! This is not a lot in the grand scheme of things but, it was closer to 20oz than he'd been in weeks. For the first time in weeks, we were hopeful that we could keep him from the hospital!
Within four days, the minimum fluid intake was 12 oz. and closing in on 20 oz a day! He went from barely eating enough food to qualify as one meal to closing in on 2 meals a day! To top it off, he quit asking for all his "cheese" foods! Which prompted me to remove milk/casein from his diet on the third day.
That was a rough one because he acted out badly as his little body detoxed for a few days.
After two weeks, he dark purple circles under his eyes, I would come to know as "allergic shiners" disappeared completely! His skin went from grey and very pale white to a soft, porcelain, peach color! He was laughing and smiling! His eye contact which we'd worked so hard to maintain and had promptly disappeared was back!! His meltdowns dropped to almost nothing! He still had them but, they weren't at the level they were before!
Let me explain, if you've not had a Tourette Syndrome child or an ASD child, you'll not understand when I say "rage episode", it does not begin to cover it! There are tiers to rages in TS children or so I am told by the neuro. Rage being the first one, ODD (oppositional defiant disorder) being the second and the third is rare and it is called Explosive Behavior Disorder. This last one is where DW fell into. When he would have an episode, as we call them, he would break windows, tear his bed and bedroom apart, charge the bedroom door over and over again like a linebacker, which would always break where he hinges met the doorframe! This from a little 5 year old! He would hit, kick, bite, scream, etc. Children with EBD grow up to become wife beaters, in jail more often than not for assault! This was the lowest point in this whole journey for me!
So, to see these episodes drop to the level and lower even then when we first added medication to treat them, it was a miracle!
He still tics, especially when stressed or when he can let go at home, after being out are still there but, he went from not being able to finish a sentence, beating himself over and over again to barely having a noticeable tic! I know that there are down times but, even his down times were exhausting to watch! So, to see them just drop so drastically....again all I can say is miraculous!
His anxiety level over his OCD issues and Sensory things, while still there, have also dropped dramatically!
That's not to say that he doesn't have his days or his tics don't explode now and again but, the change simply from the vitamins, which prompted the removal of milk, has made a HUGE change in our lives!
For the first time in years, I have such hope for his future!
Saturday, January 15, 2011
Scary times and how we've dug our way out, Part 1
I know I've not really written a lot here lately....life has taken some crazy turns as of late!
DW's tics, rages, and any other behavior had gotten completely out of control. All the progress we'd made with various medications for his ADHD behaviors and anxiety seemed to just dissipate. His tics became increasingly violent and out of control. His functional abdominal pain took on a life of it's own again. He began to eat less and less, which led to drinking less and less. Since he has small kidneys and we were warned at birth about keeping an eye on them, this whole thing was really starting to scare me.
He began to turn grey and extremely white, dark purple circles under his eyes were now very common to see daily. He was at the bottom, very bottom, of the weight chart and there was talk from the doctor about taking medical action to stop his weight loss even. Already at the 5th percentile for his age group before all this began, the thought of how much he weighed before Christmas was making me sick.
He began to ONLY eat macaroni and cheese and want nothing else! Which having done some nutritional studies six years back when he was first diagnosed with MSPI, I knew could mean only one thing. That at 2 years old when all doctors and specialists reassured me that all kids outgrew their MSPI, they were wrong! I had learned some time ago that sometimes in certain intolerant or allergic individuals, they can become addicted to or crave the one food they are allergic to. So, my son repeatedly asking for macaroni, ice cream, etc. was a huge warning sign to me. Only, at this point, I would give in because some calories are better than none, right? If anyone has a child like this, we all no, that they will go days without eating if pushed too! I know, he's done it!
Right before Christmas I had resigned myself to the hospital stay I knew was inevitable. I was trying to figure out in my head how I would manage two children, one at home and one there. DW again, a very anxiety ridden child would not handle me being away from him, even for short periods of time. His father and him barely got along, so that would add more stress. JD would not understand what was going on and though I know that there are times he understands what I tell him, I'm not sure he always gets it and this would be one of those times.
Needless to say, I was almost beside myself, crying myself to sleep every night, begging, pleading for some miracle to happen. Every morning I'd wake though and it would all be the same. I was desperate and ready to try anything at this point.
Then a lady whom I've come to have much respect for, made a simple suggestion that would change our whole world. Ida, is a wonderful woman who works for and with Sensory Processing kiddos and their families. She had suggested putting DW on a LIQUID vitamin and probiotic. He already got a gummy vitamin because this was the only kind he could handle so I didn't see how a liquid would matter but, it turns out it would make all the difference in the world and lead to some more changes in our lives that so far, have been truly amazing!
DW's tics, rages, and any other behavior had gotten completely out of control. All the progress we'd made with various medications for his ADHD behaviors and anxiety seemed to just dissipate. His tics became increasingly violent and out of control. His functional abdominal pain took on a life of it's own again. He began to eat less and less, which led to drinking less and less. Since he has small kidneys and we were warned at birth about keeping an eye on them, this whole thing was really starting to scare me.
He began to turn grey and extremely white, dark purple circles under his eyes were now very common to see daily. He was at the bottom, very bottom, of the weight chart and there was talk from the doctor about taking medical action to stop his weight loss even. Already at the 5th percentile for his age group before all this began, the thought of how much he weighed before Christmas was making me sick.
He began to ONLY eat macaroni and cheese and want nothing else! Which having done some nutritional studies six years back when he was first diagnosed with MSPI, I knew could mean only one thing. That at 2 years old when all doctors and specialists reassured me that all kids outgrew their MSPI, they were wrong! I had learned some time ago that sometimes in certain intolerant or allergic individuals, they can become addicted to or crave the one food they are allergic to. So, my son repeatedly asking for macaroni, ice cream, etc. was a huge warning sign to me. Only, at this point, I would give in because some calories are better than none, right? If anyone has a child like this, we all no, that they will go days without eating if pushed too! I know, he's done it!
Right before Christmas I had resigned myself to the hospital stay I knew was inevitable. I was trying to figure out in my head how I would manage two children, one at home and one there. DW again, a very anxiety ridden child would not handle me being away from him, even for short periods of time. His father and him barely got along, so that would add more stress. JD would not understand what was going on and though I know that there are times he understands what I tell him, I'm not sure he always gets it and this would be one of those times.
Needless to say, I was almost beside myself, crying myself to sleep every night, begging, pleading for some miracle to happen. Every morning I'd wake though and it would all be the same. I was desperate and ready to try anything at this point.
Then a lady whom I've come to have much respect for, made a simple suggestion that would change our whole world. Ida, is a wonderful woman who works for and with Sensory Processing kiddos and their families. She had suggested putting DW on a LIQUID vitamin and probiotic. He already got a gummy vitamin because this was the only kind he could handle so I didn't see how a liquid would matter but, it turns out it would make all the difference in the world and lead to some more changes in our lives that so far, have been truly amazing!
Wednesday, December 1, 2010
Part 2 and pic heavy! :)
Well, as you can tell, my well meaning "every day" post didn't happened! Instead everyone got this cold that won't go away, Thanksgiving came and went as did my oldest son's birthday! He is six now, where has the time gone?!
So, in honor of his 6th year here I will share the rest of his story.
Where was I....oh yes, we were in the hospital, our third stay with him thus far. May I just say that this was 6 years ago and understanding of MSPI, though it's not a common diagnosis overall, was still in it's infancy. It is more common in the heartland of the US than anywhere else in the world! Does that say something about our diet?!
Anyway, let me tell you what the treatment for MSPI was back then around here. It was an order to stop breast feeding. It was putting my son on an IV ONLY for 48 whole hours. An IV of just clear liquids, they contain no calories, no real sustenance at all. Just some vitamins and electrolytes. So, for two whole days I had to hold a starving baby and somehow pray that his hunger; his tummy pains would go away. I prayed that his weight loss would not be too terrible too. As he was already severely underweight. Then we tried one formula, only allowed to give him mere ounces ever few hours. Again, having to watch your child starve is not an easy thing to do. If the formula did not take you would know as the SCREAMING would start, and there would be blood in his stool. So, you would again have to go back to nothing but an IV for two days on a child that was already starved.
During this time he was also diagnosed with reflux. And began medication for it.
We got to our third formula and he seemed to be adjusting well or maybe I convinced myself because watching him suffer for two days with no food, it was almost unbearable. He was not screaming though, he was not fussing all the time and when he was I couldn't blame him, being as hungry as he must've been. So, after about a week and a half of this we were released to go home. Where I just thought, hoped, prayed that all would be ok. We were released under the primary care of a gastro-intestinal doctor. A pioneer in reflux and MSPI research. The best in the region. We were to check in weekly with weights and any concerns.
So, we did just that. Checked in weekly with weights, that were not getting any bigger and every so often loosing an ounce or two. I would call with concerns of his stools and the doctor would reassure me that this stools were normal for an MSPI baby. Since no formula is entirely clear of milk or soy proteins, this was how their diaper was to look. I was still a new mom and though the voice in the back of my head told me otherwise, I ignored it. Thinking doctors know best.
Almost a month to the day, I was changing his diaper and found yet again, blood in his stool. Back to the hospital we went. This time, he'd dropped a lot of weight since his last visit and though he was near 4 months old, he was still in newborn clothes!
This visit was different. There was an air around the nursing staff, who'd now been around him for his whole life, that worried me.
Remembering that time is hard for me, for many reasons. One, it is severely emotional for me, knowing that this is the visit, he could've died.. Two, because though I would hold him for hours on end, attend to his every need and play the mother role to a T, I still was not emotionally attached to him. Which as a mother, makes one feel very terrible. I know now that this was because of all that was going on with him, the emotional toll on top of having a new baby, struggling with hormones and my new roll. Never really being allowed to bond with him as a normal mother would. I understand that this can easily account for why I didn't fully bond with him but, the guilt of it, still kills me.
For months after he came home and the months he was in the hospital, I had refused to call him by his name. Instead choosing to call him by some nickname I'd made up for him. Afraid that if I'd say his name, somehow that would make him more real and hurt more if he didn't make it.
So, the last visit, was terrible for everyone that knew him, knew us and for my family. It was days of IV starvation, and this time he was put on an NG feeding tube and pump. NG meaning nasal gastric, which simply means that it went down his nose, throat and into his tummy. He was hooked to a 24/7 pump, which automatically pumped the prescribed amount of formula into his tummy.
This was the worst thing ever. He went from 2 days of IV starvation to quite literally, drips of formula into his tummy per hour! Single drops!!! The increment increased every few days until the symptoms would start again and the cycle of starvation would begin again. I say this though, as if the simple drips were sustaining him. The truth is, even with the drips, he was starving; he was dying.
Every time they would try a new formula, it would only be days before we'd have to start again. All the while, his diapers were increasingly disgusting and worrisome. He began dropping weight at an alarming rate and considering he had very little to work with, it began to take it's toll on his body. He lost the ability to cry first, replaced instead by this, pathetic sounding whimper. A sound that will haunt me for as long as I live. He then lost the ability to lift his left leg, followed by his arms and other leg and then the ability to hold his head up. His skin began to hang off of him. His face began to resemble that of a skeleton. Even now I tear up at the thought of it.
Right before the day he lost enough weight to hit 8lbs even, a mere 5 oz over his birth weight, the pediatrician stood his ground and took over the case. He came to me and told me that they could do a surgical procedure and put a port into his tummy for a direct line but, that they didn't think he'd survive. It was my choice though. He told me to have him baptized just in case. He listened to me about the stools and did a test. It came back that he had C. Diff. Don't ask me the proper name for it, I can't even say it, let alone spell it! I chose to forgo the port and stick with the NG tube but, most importantly, when the pediatrician asked if I trusted him enough to take over, I let him. I had nothing else to loose and watching my son starve to death was becoming more than I could take.
He was put on a regime of strong antibiotics. And since we'd finally found a formula he could tolerate, the pediatrician increased the ridiculous drips over the course of several hours to an ounce every few hours. The next day when he hit the 8 lbs though, I remember dropping to my knees in the hall outside the room. The nurses held me up and held onto me. I refused to go back into the room though. I didn't want him to see me crying to think that I'd given up on him. Even though I'd secretly prayed that if someone upstairs was going to take him, then take him now so he would not have to suffer. Something like that is incredibly hard to do as a mother, attached or not to your child. To get to that point, it's heart wrenching and even now, as I type this, the tears pour down. I would never wish that on any mother.
That was the worst part of the whole thing, over the course of he next few days the formula was increased, he began to stop loosing and weight and maintaining it. He started to smile and act a bit like a baby should.
When he finally began putting on ounces, we were allowed to take him home, once again reassured that this would be his last time there.
Here is his first day home, playing with his snack tray in his carseat. That toy was the only thing he would attempt to play with! Still weak, he would swing his right arm over the spinning snail and watch it spin.
Below is a picture of him the very first time I put him in the crib that had patiently waited months for him to sleep in and still would for many more. His NG tube set up did not allow him to sleep in the crib. He was hooked up 24/7 so he could've gotten tangled up in and choked to death if not put someplace safe.
Another month later, still small as can be and in summer clothes. This was a big deal to me as I never liked to let people see him like that because they would stare.
He was almost 9 months old when he yanked the tube out on his own for the last time. He was chubby and healthy then.
He's not been without his struggles, Sensory Processing Disorder, OCD, ADHD, Tourette Syndrome, Explosive Behavior Disorder, anxiety, hearing loss, etc. but, he's come through it all! There is not a day that goes by, even on the days with meltdowns that I don't thank the heavens that he is here with me. I don't take one smile, laugh, milestone, etc for granted and I hope I never do. He's gone through all of this, all that life has thrown at him and he's still here. He's fought tooth and nail to be here.
This is him now! My adorable, cheesy, hard to handle, sweet, kind, exhausting, funny, smart, wonderful little 6 year old man!
Other than being a bit small for his age, you'd never know. Never. On the days when I cannot get myself to look on the bright side, when getting out of bed seems to be too much to do, when I do not want to do another IEP, specialist or doctor's appointment, I think of all he's gone through, all he will and I get off of my pity pot and just do it.
So, in honor of his 6th year here I will share the rest of his story.
Where was I....oh yes, we were in the hospital, our third stay with him thus far. May I just say that this was 6 years ago and understanding of MSPI, though it's not a common diagnosis overall, was still in it's infancy. It is more common in the heartland of the US than anywhere else in the world! Does that say something about our diet?!
Anyway, let me tell you what the treatment for MSPI was back then around here. It was an order to stop breast feeding. It was putting my son on an IV ONLY for 48 whole hours. An IV of just clear liquids, they contain no calories, no real sustenance at all. Just some vitamins and electrolytes. So, for two whole days I had to hold a starving baby and somehow pray that his hunger; his tummy pains would go away. I prayed that his weight loss would not be too terrible too. As he was already severely underweight. Then we tried one formula, only allowed to give him mere ounces ever few hours. Again, having to watch your child starve is not an easy thing to do. If the formula did not take you would know as the SCREAMING would start, and there would be blood in his stool. So, you would again have to go back to nothing but an IV for two days on a child that was already starved.
During this time he was also diagnosed with reflux. And began medication for it.
We got to our third formula and he seemed to be adjusting well or maybe I convinced myself because watching him suffer for two days with no food, it was almost unbearable. He was not screaming though, he was not fussing all the time and when he was I couldn't blame him, being as hungry as he must've been. So, after about a week and a half of this we were released to go home. Where I just thought, hoped, prayed that all would be ok. We were released under the primary care of a gastro-intestinal doctor. A pioneer in reflux and MSPI research. The best in the region. We were to check in weekly with weights and any concerns.
So, we did just that. Checked in weekly with weights, that were not getting any bigger and every so often loosing an ounce or two. I would call with concerns of his stools and the doctor would reassure me that this stools were normal for an MSPI baby. Since no formula is entirely clear of milk or soy proteins, this was how their diaper was to look. I was still a new mom and though the voice in the back of my head told me otherwise, I ignored it. Thinking doctors know best.
Almost a month to the day, I was changing his diaper and found yet again, blood in his stool. Back to the hospital we went. This time, he'd dropped a lot of weight since his last visit and though he was near 4 months old, he was still in newborn clothes!
This visit was different. There was an air around the nursing staff, who'd now been around him for his whole life, that worried me.
Remembering that time is hard for me, for many reasons. One, it is severely emotional for me, knowing that this is the visit, he could've died.. Two, because though I would hold him for hours on end, attend to his every need and play the mother role to a T, I still was not emotionally attached to him. Which as a mother, makes one feel very terrible. I know now that this was because of all that was going on with him, the emotional toll on top of having a new baby, struggling with hormones and my new roll. Never really being allowed to bond with him as a normal mother would. I understand that this can easily account for why I didn't fully bond with him but, the guilt of it, still kills me.
For months after he came home and the months he was in the hospital, I had refused to call him by his name. Instead choosing to call him by some nickname I'd made up for him. Afraid that if I'd say his name, somehow that would make him more real and hurt more if he didn't make it.
So, the last visit, was terrible for everyone that knew him, knew us and for my family. It was days of IV starvation, and this time he was put on an NG feeding tube and pump. NG meaning nasal gastric, which simply means that it went down his nose, throat and into his tummy. He was hooked to a 24/7 pump, which automatically pumped the prescribed amount of formula into his tummy.
This was the worst thing ever. He went from 2 days of IV starvation to quite literally, drips of formula into his tummy per hour! Single drops!!! The increment increased every few days until the symptoms would start again and the cycle of starvation would begin again. I say this though, as if the simple drips were sustaining him. The truth is, even with the drips, he was starving; he was dying.
Every time they would try a new formula, it would only be days before we'd have to start again. All the while, his diapers were increasingly disgusting and worrisome. He began dropping weight at an alarming rate and considering he had very little to work with, it began to take it's toll on his body. He lost the ability to cry first, replaced instead by this, pathetic sounding whimper. A sound that will haunt me for as long as I live. He then lost the ability to lift his left leg, followed by his arms and other leg and then the ability to hold his head up. His skin began to hang off of him. His face began to resemble that of a skeleton. Even now I tear up at the thought of it.
He was put on a regime of strong antibiotics. And since we'd finally found a formula he could tolerate, the pediatrician increased the ridiculous drips over the course of several hours to an ounce every few hours. The next day when he hit the 8 lbs though, I remember dropping to my knees in the hall outside the room. The nurses held me up and held onto me. I refused to go back into the room though. I didn't want him to see me crying to think that I'd given up on him. Even though I'd secretly prayed that if someone upstairs was going to take him, then take him now so he would not have to suffer. Something like that is incredibly hard to do as a mother, attached or not to your child. To get to that point, it's heart wrenching and even now, as I type this, the tears pour down. I would never wish that on any mother.
That was the worst part of the whole thing, over the course of he next few days the formula was increased, he began to stop loosing and weight and maintaining it. He started to smile and act a bit like a baby should.
When he finally began putting on ounces, we were allowed to take him home, once again reassured that this would be his last time there.
Here is his first day home, playing with his snack tray in his carseat. That toy was the only thing he would attempt to play with! Still weak, he would swing his right arm over the spinning snail and watch it spin.
Below is a picture of him the very first time I put him in the crib that had patiently waited months for him to sleep in and still would for many more. His NG tube set up did not allow him to sleep in the crib. He was hooked up 24/7 so he could've gotten tangled up in and choked to death if not put someplace safe.
Another month later, still small as can be and in summer clothes. This was a big deal to me as I never liked to let people see him like that because they would stare.
He's not been without his struggles, Sensory Processing Disorder, OCD, ADHD, Tourette Syndrome, Explosive Behavior Disorder, anxiety, hearing loss, etc. but, he's come through it all! There is not a day that goes by, even on the days with meltdowns that I don't thank the heavens that he is here with me. I don't take one smile, laugh, milestone, etc for granted and I hope I never do. He's gone through all of this, all that life has thrown at him and he's still here. He's fought tooth and nail to be here.
This is him now! My adorable, cheesy, hard to handle, sweet, kind, exhausting, funny, smart, wonderful little 6 year old man!
Monday, November 22, 2010
What I am thankful for part 1
Since today begins the week of Thanksgiving, I plan on every day posting something that I am thankful for an then telling you all why, whether you want to hear it or not! ha ha
Every single year for the last 6 years almost, my heart, and head is filled with thoughts of many things. I am most grateful for my son.
well both of them but, 6 years ago on the 30th of this month, my oldest son was born.
What is suppose to be a time of happiness and celebration or most was one of the most frightful times of my life, the second most frightful time was when my second son was born.
When DW was born though, I was 39 weeks pregnant, my uterus had easily shoved my heart, lungs, and every major organ way up under my ribs months ago. At a mere 34 weeks pregnant, my uterus measured 43 weeks! (It is why I have no sympathy sometimes when I hear a woman pregnant with only one child! lol) For those who have no idea what this means, it means that I looked quite frankly like I was having not one baby, not two but, closer to 3 or 4 babies. Everywhere I went, the first two questions I got where: "How many babies are you having?" and when they would hear only one, it was immediately followed by "Really? When are you due?". I was huge. It was called Polyhydramnios. In simple terms it simply means excess water in the uterus. It is usually a sign that something is wrong. Though no one told me this upfront. All that they said was that they wanted to keep an eye on the baby.
I remember several weeks before going in to be induced I started feeling like I was wetting myself. Nothing gushing or like it normally feels when your water breaks (if my water would've broke normally, the whole neighborhood would've known, TRUST ME!). I just felt like I was dribbling all the time. They told me that it tested positive for amniotic fluid but all sorts of things could make me test positive. They couldn't feel the uterus so, there was no need to worry. Now I know better.
After two days on pitocin, not a fun time, and no baby, no nothing. They called in my specific OBGYN. I'll never forget the look of contempt on his face when he turned to the nurses and said, "her birth canal is bent!", almost like they should've known. Which did explain feeling like they were shoving their whole hand up to check! lol So, all my plans for natural childbirth went out he window and C-section was the only option.
DW came out normal enough or so I thought. He was crying and everything. My perception of time though gets a bit muddy looking back. It took 2 spinals to work and I was then unable to move my head or swallow! Then I began hemorrhaging and after that, it gets all grey. I remember them bringing him to by my head and someone having to turn my head a bit. I remember mustering up every last bit of will power I could to move my arm to touch him, I needed to do that. It kind of flopped up and over in his direction but, was able to move my finger on his cheek. As I spoke to him, he began to settle down and not cry. I felt overjoyed! He knew who his mommy was! A few hours later I would come to regret that moment. I should've let him cry. While I know that this really wouldn't have mattered in the long run, I still wonder if those minutes where he wasn't crying, would've made a difference.
The last thing I remember clearly was touching him and then it all goes grey. I almost died that day.
When I came to in the recovery room, I was so groggy, unable to open my eyes or move much at all. The nurses running in and out of the room. Whispering but, I couldn't make it out. I remember my mother coming in and my husband. Both of them overly supportive of me but, not saying much about DW and though I registered this, I was too dopey to ask why.
They left me and after some time, another nurse came in and sat there at the side of my bed, I could hear here there, sighing and sort of like she was making up her mind. I remember her touching my shoulder and saying, "I don't know where your nurse is but, I think that someone should tell you, something's wrong with the baby."
It is amazing how your brain can do two things at once. One part of me immediately started doing an inventory of what I could move and then focused on keeping those parts moving so that I could move faster. The other part of me though immediately snapped out of the blissful groggy state, went into denial. Oh, it's nothing. They're probably just being cautious, etc. Though I knew I had to get to my baby.
It's a weird thing a C-section. You don't get to see your baby being born, you don't get to immediately hold or really touch your child. So, that bonding is just not there, it was the maternal instinct that I have in general for children that kicked in for me in the beginning. Not the "that's MY baby" thing, that most others feel. I hadn't bonded with him and for many months, though I would act as though I did, I would not. NOT because of post partum depression either, just for the shear fact that I was about to be overwhelmed!
By the time I got to see DW, I knew it wasn't just something simple. He'd been blue when I saw him and though was turning a pretty pick, he'd begun to turn blue again in the nursery. The only time he wasn't blue was when he was crying. They tried to help him by clearing his airways but, were unable to get anything through to his nose on either side to get to his lungs, let alone anywhere else. So, they tried going through his mouth and hit a blockage somewhere in his esophagus too. A condition so rare, nurses and doctors will not see it in their lifetime usually. One doctor realized that the blockage in his esophagus was a partial, softer blockage and as bad as it sounds, gave the tube a harder shove and pushed his way through. At this point it was an emergency to do this. Babies are born unable to breath from their mouths, only out of their noses and it was clear to the staff, that DW could not and without a proper way to intubate him, he would die.
When I saw my sweet, sweet angel for the first time, he was covered in wires and tubes.
It is an odd thing as a mother to see. The NICU nurses were nice enough to let me hold him, though every time I would move him, the tubes would shift and he would gag, the wires would move and the alarms would go off. I held onto that little baby. Trying to get a feel for him, how he felt in my arms but, instead all I saw was tubes and wires. The next day, he had to be transferred to another NICU acroos town. I was lucky enough that he was only shipped across town, if I had, had him anywhere else, he would've had to leave the city I was in to come to the hospital here, the only one regionally with a specialist who could do the surgery to correct his nose. Still, knowing that your baby was across town and you would be here for another 3 days was NOT ok. So, after only 36 hours after a very serious and complicated C-section, I begged, pleaded and ultimately convinced the OBGYN to let a VERY anemic me, out of the hospital so I could be with my baby. I had agreed to only a few hours a day visitations in the NICU, being wheelchair bound for at least 3 more days and being careful because I was really anemic. I did none of those things!
My first day out of the hospital, I spent 8 hours in a wheelchair by my son's side. The second day, it was 6 hours and then a small break to go home as I was feeling very sick and needed to pump. I returned for another 4 hours. No one could convince me otherwise. By not quite 48 hours out of the hospital, the wheelchair had begun to annoy me and I ditched it! It was not easy to get in and out of a chair but, I didn't want to be a burden on everyone. DW had his first surgery that next day too.
Nothing is more scary than knowing that your baby, not even a week old is going in for surgery. Never mind that he could come out blind, or brain damaged. It is just that they are so young, I would not wish it on any parent.
Needless to say he came out fine. The prognosis was good, he might have some kind of brain damage from the lack of oxygen for a couple hours after birth, the whole in his heart was not too big, his kidneys, while VERY small were functioning and though he'd failed his newborn hearing screen, he was alive and ok. There was a chance that this would reoccur but, for now he was ok.
I remember the first time that I saw him without tubes and wires, I didn't recognize him! I remember asking my husband, "is this our baby?!"
We left the NICU on December 8th. Before Christmas we would be back. Our first two holidays, with our new baby boy was spent in a hospital, praying that he'd be ok as the specialist was out of town. His 2nd surgery was almost to the day a month after his first one. Leaving the hospital this time was not a happy experience either. I will simply say that there were things that had to be done to his nose that we had to learn to do at home.....thank god for my mother. I physically was unable to do it and she could!
One month later, things were good. Well, kind of. He was SCREAMING....I don't mean crying, fussing or any other such nonesense, I do me full on SCREAMING! He would do this for 8 hours or more a day, not stopping to eat, to nap or breathe! I remember one night after my husband had gone to work at 2:30, DW began his tirade about 3 and was still going by 11pm that night, it was freezing outside but, I could take no more. Feeling like a failure, I snapped him into his swing and walked outside in the night, with the phone in tears. I remember calling my husband and my mother.
A few weeks later, my mother was there and DW began his screaming again and I refused to let anyone hold him, not because I'd bonded with him yet, because I had not yet, it was because I had the mentality that I was his mother, I should be able to handle it, make it better. I remember my mother saying that it was normal, she just kept repeating it to me until I finally found myself wondering. Later that night, she changed his diaper and there in his diaper was blood!
We found ourselves back at the hospital almost a month to the day from our last stay. This time he was diagnosed with MSPI (milk soy protein intolerance) and Failure to Thrive. I will share what the next two and half months brought with this, tomorrow. Until then, if you read this, hug your little ones a bit tighter and take a moment to remember that there are whole families out there with their babies in the NICU, whose lives have stopped as we go on with ours.
Every single year for the last 6 years almost, my heart, and head is filled with thoughts of many things. I am most grateful for my son.
What is suppose to be a time of happiness and celebration or most was one of the most frightful times of my life, the second most frightful time was when my second son was born.
When DW was born though, I was 39 weeks pregnant, my uterus had easily shoved my heart, lungs, and every major organ way up under my ribs months ago. At a mere 34 weeks pregnant, my uterus measured 43 weeks! (It is why I have no sympathy sometimes when I hear a woman pregnant with only one child! lol) For those who have no idea what this means, it means that I looked quite frankly like I was having not one baby, not two but, closer to 3 or 4 babies. Everywhere I went, the first two questions I got where: "How many babies are you having?" and when they would hear only one, it was immediately followed by "Really? When are you due?". I was huge. It was called Polyhydramnios. In simple terms it simply means excess water in the uterus. It is usually a sign that something is wrong. Though no one told me this upfront. All that they said was that they wanted to keep an eye on the baby.
I remember several weeks before going in to be induced I started feeling like I was wetting myself. Nothing gushing or like it normally feels when your water breaks (if my water would've broke normally, the whole neighborhood would've known, TRUST ME!). I just felt like I was dribbling all the time. They told me that it tested positive for amniotic fluid but all sorts of things could make me test positive. They couldn't feel the uterus so, there was no need to worry. Now I know better.
After two days on pitocin, not a fun time, and no baby, no nothing. They called in my specific OBGYN. I'll never forget the look of contempt on his face when he turned to the nurses and said, "her birth canal is bent!", almost like they should've known. Which did explain feeling like they were shoving their whole hand up to check! lol So, all my plans for natural childbirth went out he window and C-section was the only option.
DW came out normal enough or so I thought. He was crying and everything. My perception of time though gets a bit muddy looking back. It took 2 spinals to work and I was then unable to move my head or swallow! Then I began hemorrhaging and after that, it gets all grey. I remember them bringing him to by my head and someone having to turn my head a bit. I remember mustering up every last bit of will power I could to move my arm to touch him, I needed to do that. It kind of flopped up and over in his direction but, was able to move my finger on his cheek. As I spoke to him, he began to settle down and not cry. I felt overjoyed! He knew who his mommy was! A few hours later I would come to regret that moment. I should've let him cry. While I know that this really wouldn't have mattered in the long run, I still wonder if those minutes where he wasn't crying, would've made a difference.
The last thing I remember clearly was touching him and then it all goes grey. I almost died that day.
When I came to in the recovery room, I was so groggy, unable to open my eyes or move much at all. The nurses running in and out of the room. Whispering but, I couldn't make it out. I remember my mother coming in and my husband. Both of them overly supportive of me but, not saying much about DW and though I registered this, I was too dopey to ask why.
They left me and after some time, another nurse came in and sat there at the side of my bed, I could hear here there, sighing and sort of like she was making up her mind. I remember her touching my shoulder and saying, "I don't know where your nurse is but, I think that someone should tell you, something's wrong with the baby."
It is amazing how your brain can do two things at once. One part of me immediately started doing an inventory of what I could move and then focused on keeping those parts moving so that I could move faster. The other part of me though immediately snapped out of the blissful groggy state, went into denial. Oh, it's nothing. They're probably just being cautious, etc. Though I knew I had to get to my baby.
It's a weird thing a C-section. You don't get to see your baby being born, you don't get to immediately hold or really touch your child. So, that bonding is just not there, it was the maternal instinct that I have in general for children that kicked in for me in the beginning. Not the "that's MY baby" thing, that most others feel. I hadn't bonded with him and for many months, though I would act as though I did, I would not. NOT because of post partum depression either, just for the shear fact that I was about to be overwhelmed!
By the time I got to see DW, I knew it wasn't just something simple. He'd been blue when I saw him and though was turning a pretty pick, he'd begun to turn blue again in the nursery. The only time he wasn't blue was when he was crying. They tried to help him by clearing his airways but, were unable to get anything through to his nose on either side to get to his lungs, let alone anywhere else. So, they tried going through his mouth and hit a blockage somewhere in his esophagus too. A condition so rare, nurses and doctors will not see it in their lifetime usually. One doctor realized that the blockage in his esophagus was a partial, softer blockage and as bad as it sounds, gave the tube a harder shove and pushed his way through. At this point it was an emergency to do this. Babies are born unable to breath from their mouths, only out of their noses and it was clear to the staff, that DW could not and without a proper way to intubate him, he would die.
When I saw my sweet, sweet angel for the first time, he was covered in wires and tubes.
It is an odd thing as a mother to see. The NICU nurses were nice enough to let me hold him, though every time I would move him, the tubes would shift and he would gag, the wires would move and the alarms would go off. I held onto that little baby. Trying to get a feel for him, how he felt in my arms but, instead all I saw was tubes and wires. The next day, he had to be transferred to another NICU acroos town. I was lucky enough that he was only shipped across town, if I had, had him anywhere else, he would've had to leave the city I was in to come to the hospital here, the only one regionally with a specialist who could do the surgery to correct his nose. Still, knowing that your baby was across town and you would be here for another 3 days was NOT ok. So, after only 36 hours after a very serious and complicated C-section, I begged, pleaded and ultimately convinced the OBGYN to let a VERY anemic me, out of the hospital so I could be with my baby. I had agreed to only a few hours a day visitations in the NICU, being wheelchair bound for at least 3 more days and being careful because I was really anemic. I did none of those things!
My first day out of the hospital, I spent 8 hours in a wheelchair by my son's side. The second day, it was 6 hours and then a small break to go home as I was feeling very sick and needed to pump. I returned for another 4 hours. No one could convince me otherwise. By not quite 48 hours out of the hospital, the wheelchair had begun to annoy me and I ditched it! It was not easy to get in and out of a chair but, I didn't want to be a burden on everyone. DW had his first surgery that next day too.
Nothing is more scary than knowing that your baby, not even a week old is going in for surgery. Never mind that he could come out blind, or brain damaged. It is just that they are so young, I would not wish it on any parent.
Needless to say he came out fine. The prognosis was good, he might have some kind of brain damage from the lack of oxygen for a couple hours after birth, the whole in his heart was not too big, his kidneys, while VERY small were functioning and though he'd failed his newborn hearing screen, he was alive and ok. There was a chance that this would reoccur but, for now he was ok.
I remember the first time that I saw him without tubes and wires, I didn't recognize him! I remember asking my husband, "is this our baby?!"
We left the NICU on December 8th. Before Christmas we would be back. Our first two holidays, with our new baby boy was spent in a hospital, praying that he'd be ok as the specialist was out of town. His 2nd surgery was almost to the day a month after his first one. Leaving the hospital this time was not a happy experience either. I will simply say that there were things that had to be done to his nose that we had to learn to do at home.....thank god for my mother. I physically was unable to do it and she could!
One month later, things were good. Well, kind of. He was SCREAMING....I don't mean crying, fussing or any other such nonesense, I do me full on SCREAMING! He would do this for 8 hours or more a day, not stopping to eat, to nap or breathe! I remember one night after my husband had gone to work at 2:30, DW began his tirade about 3 and was still going by 11pm that night, it was freezing outside but, I could take no more. Feeling like a failure, I snapped him into his swing and walked outside in the night, with the phone in tears. I remember calling my husband and my mother.
A few weeks later, my mother was there and DW began his screaming again and I refused to let anyone hold him, not because I'd bonded with him yet, because I had not yet, it was because I had the mentality that I was his mother, I should be able to handle it, make it better. I remember my mother saying that it was normal, she just kept repeating it to me until I finally found myself wondering. Later that night, she changed his diaper and there in his diaper was blood!
We found ourselves back at the hospital almost a month to the day from our last stay. This time he was diagnosed with MSPI (milk soy protein intolerance) and Failure to Thrive. I will share what the next two and half months brought with this, tomorrow. Until then, if you read this, hug your little ones a bit tighter and take a moment to remember that there are whole families out there with their babies in the NICU, whose lives have stopped as we go on with ours.
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