The next time I had to visit the hospital it was for a trip to see the audiologist. Now our audiologist is really nice and she mostly gets my sense of humor which is a big plus.
The first you need to know is that when you are small and get your hearing tested they put you in a sound proof room with 2 speakers and then when you look at a speaker after it makes a sound something cool happens. At the old hospital Donald Duck wiggled when you looked at it after a sound was played and is was funny and cute. At our new State Of the Art hospital all you get is a pink princess, and she doesn't even move. But that's only if you look at the right speaker what about if you look at the left speaker? Pinocchio. Really Pinnocchio? what is this 1975? That's exactly what I said to the audiologist too when I saw Pinnocchio and she said "Oh Heather don't get me started."
So here I am thinking, man I am so not impressed and I have other mom's who think the inside of the hospital looks like an Apple Store. It actually gets better. Sammy was scheduled to have surgery on Feb 20th. We got to pre op when we were supposed to, got all checked in, had someone taking care of our other son and dog, husband had taken the day off work, Sam had fasted. In short all our ducks were in order and in a row marching along perfectly. They took Sam down the hall for surgery, then brought him right back. Apparently there were no rooms available for Sam to recover in. Say what? Our doctor said he doesn't have to have and ICU bed we can deal with just a monitored bed. Okay, but there aren't any of those available either. WHAT! I thought this was the brand new million dollar with lots of beds hospital. Don't give me some crap about their being car accidents over the weekend it didn't even snow here. How on earth can the hospital already be out of beds. It's only been open for 6 weeks. Seriously? So we had to take Sam home and reschedule the surgery. Lame IMHO
Friday, February 24, 2012
Mott's Childrens Hospital?
We live very near Ann Arbor Mi. As such when we go to the hospital, and we go pretty much every week, we go to Mott's Children's Hospital. It's a nice place, they have Big Bird in the O.R.waiting room, Magna Doodles and flat screen T.V's with cartoons, fun radiation vests with themes and many other random kid friendly things.
About a month ago, the new Mott's Hospital opened its doors. This hospital was 10 years in the making and really really expensive. You can't drive anywhere with out seeing a billboard for the grand opening for this new state of the art hospital. While the hospital was being built all the clinics had signs up that said "can't wait for you to see our new home." I started asking some of our nurses if they had seen the new hospital and they said things like, "yeah is cool but you have to walk and walk" or "it's okay but they didn't take any of our recommendations".
So I waited with much anticipation for our first visit to the new hospital. Our first visit it turned out was to our ENT. When we got to the waiting room the first thing I noticed was that the flat screen T.V. apparently didn't make the trip to the new waiting room. The next think was where were the coloring books and stuff? Oh well, Sam's to young for that stuff anyway. So we go in to one of the exam rooms and I am thinking to my self, the one thing I hope they have is a baby changing area because in and ENT office you get a chair with some fancy stuff attached and a small desk for the doctor's computer but there is no exam table where you could change your baby. And let me tell you something about babies that are doctor savvy. They poop when they see a white coat.
No such luck with the changing table sadly. So we sit and we wait for our doctor and I look around the room. It's Salmon colored, with a picture of an ocean. REALLY!!!? How on earth is this supposed to be calming to a kid who is scared to death some one is going to come in with a huge needle and poke them with it? I asked the nurse where the coloring stuff and Magna doodles were and she said "oh, we just haven't brought them over from the old hospital yet". OMG! Some one actually paid money to build this?
About a month ago, the new Mott's Hospital opened its doors. This hospital was 10 years in the making and really really expensive. You can't drive anywhere with out seeing a billboard for the grand opening for this new state of the art hospital. While the hospital was being built all the clinics had signs up that said "can't wait for you to see our new home." I started asking some of our nurses if they had seen the new hospital and they said things like, "yeah is cool but you have to walk and walk" or "it's okay but they didn't take any of our recommendations".
So I waited with much anticipation for our first visit to the new hospital. Our first visit it turned out was to our ENT. When we got to the waiting room the first thing I noticed was that the flat screen T.V. apparently didn't make the trip to the new waiting room. The next think was where were the coloring books and stuff? Oh well, Sam's to young for that stuff anyway. So we go in to one of the exam rooms and I am thinking to my self, the one thing I hope they have is a baby changing area because in and ENT office you get a chair with some fancy stuff attached and a small desk for the doctor's computer but there is no exam table where you could change your baby. And let me tell you something about babies that are doctor savvy. They poop when they see a white coat.
No such luck with the changing table sadly. So we sit and we wait for our doctor and I look around the room. It's Salmon colored, with a picture of an ocean. REALLY!!!? How on earth is this supposed to be calming to a kid who is scared to death some one is going to come in with a huge needle and poke them with it? I asked the nurse where the coloring stuff and Magna doodles were and she said "oh, we just haven't brought them over from the old hospital yet". OMG! Some one actually paid money to build this?
Saturday, January 14, 2012
Pink Cape!
So, before Christmas my mother brought over some sort of a toy magazine for Max to browse in search of a Christmas present. He flips to the back and finds 2 children wearing capes. A boy with a blue on and a girl with a pink one. He is very excited about these capes. Especially excited about the pink one. My mom gets all "come one Max," "pink is for girls." And Max decides the pink one is all he wants and wants nothing at all to do with the thought of having a blue cape. I look at the price..$19.95, for kids cape? Not this year, I had already gotten all his gifts any way.
Later that week a friend of mine called and said she would be in town for the week and was their any project I would like to do? First thing I thought of was the pink cape, he had been carrying that magazine around for a week and the only page left was the one with the pink cape. Jessy said "sure, we can make a cape."
I went to Jo Ann Fabrics later that week and bought the pink, purple, and silver material and velcro. Spent $16 on a cape I didn't want to spend $19.95 on, oh well.
Jessy came over and we made the cape. I have to say it came out pretty well but you be the judge. Max loves it.
from behind
and then he noticed I wanted to take his picture.
Later that week a friend of mine called and said she would be in town for the week and was their any project I would like to do? First thing I thought of was the pink cape, he had been carrying that magazine around for a week and the only page left was the one with the pink cape. Jessy said "sure, we can make a cape."
I went to Jo Ann Fabrics later that week and bought the pink, purple, and silver material and velcro. Spent $16 on a cape I didn't want to spend $19.95 on, oh well.
Jessy came over and we made the cape. I have to say it came out pretty well but you be the judge. Max loves it.
and then he noticed I wanted to take his picture.
Friday, November 18, 2011
Time management
I'm not sure if having two kids makes me better at time management or not. I constantly ask myself if what I am doing at any given time is really what I should be doing. It matters not though, I still need more hours in a day then I have. Specifically child free hours. Wouldn't it be great if we could make evenings like 3 hours longer with out giving up any sleep?
Thursday, November 17, 2011
Has it Really Been Two Months
Apparently it has :) I have negleted my blog and for that dear readers I do aplogise. I have read other peoples blogs latley and wistfully thought "man I wish I had time to post" For those of you who are interested I will try and catch you up.
Sam has something called Charge Syndrome, look it up if you like I'll wait...Its a recoginsed pattern of birth defects and its pretty rare. We have spent the last 2 months hanging out in various sections of Mott's Hospital trying to find out which birth defects our Sammy does or does not have. The great news is he doesn't seem to have the really scary/ life threatening aspects of Charge. The bad news is he is deaf/blind. No, he is not deaf and he is not blind but he has vision impairment and hearing impairment. Also very rare, actually only about 60 kids in Michigan with combined sensory loss like that.
The good news is, there is a lot of support out there for people with kids that have specific issues. I hate the word special needs. All kids are special and have needs. We go to a play group once a week and meet with other mom's with special needs kids. You know what I learned? Mom's with special needs kids are just like me and you and well every one else. They often have "normal" kids at home. They like going to Mott's Hospital about as much as the OBGYN and they are pretty honest when asked how things are going. One of the first times I went to Mott's with Sam I met a mom who had a son with Cerebral Palsy and I thought man she is tough, I wonder if she wears a cape. Now that we know we also have some extra hurdles to over come I keep waiting for my cape to show up in the mail. It hasn't yet.
Some of the other blogs I read are all about so and so and their life with such and such illness/disease and or condition. Not going to happen here. My plan and hope for both my boys is for them to do their best what ever their best might be. Having or not having Charge isn't all I want our lives to be about so it's not going to be what the blog is about.
Max is doing pretty well, his speech is improving but still not where I wish it was. Its beyond frustrating not being able to communicate with your son. He loved being Mickey Mouse for Halloween and he loved trick or treating. He is the best older brother we could have asked for and sometimes when we go to a doctors appt and learn something else Sam is going to have to deal with and I'm a little down, Max runs up to Sam kisses him and says "Sam's Home!" And I am reminded, to Max he is his little brother and he is perfect.
That is about all we have been up to in the last couple months. I'll try and post more often I promise.
Sam has something called Charge Syndrome, look it up if you like I'll wait...Its a recoginsed pattern of birth defects and its pretty rare. We have spent the last 2 months hanging out in various sections of Mott's Hospital trying to find out which birth defects our Sammy does or does not have. The great news is he doesn't seem to have the really scary/ life threatening aspects of Charge. The bad news is he is deaf/blind. No, he is not deaf and he is not blind but he has vision impairment and hearing impairment. Also very rare, actually only about 60 kids in Michigan with combined sensory loss like that.
The good news is, there is a lot of support out there for people with kids that have specific issues. I hate the word special needs. All kids are special and have needs. We go to a play group once a week and meet with other mom's with special needs kids. You know what I learned? Mom's with special needs kids are just like me and you and well every one else. They often have "normal" kids at home. They like going to Mott's Hospital about as much as the OBGYN and they are pretty honest when asked how things are going. One of the first times I went to Mott's with Sam I met a mom who had a son with Cerebral Palsy and I thought man she is tough, I wonder if she wears a cape. Now that we know we also have some extra hurdles to over come I keep waiting for my cape to show up in the mail. It hasn't yet.
Some of the other blogs I read are all about so and so and their life with such and such illness/disease and or condition. Not going to happen here. My plan and hope for both my boys is for them to do their best what ever their best might be. Having or not having Charge isn't all I want our lives to be about so it's not going to be what the blog is about.
Max is doing pretty well, his speech is improving but still not where I wish it was. Its beyond frustrating not being able to communicate with your son. He loved being Mickey Mouse for Halloween and he loved trick or treating. He is the best older brother we could have asked for and sometimes when we go to a doctors appt and learn something else Sam is going to have to deal with and I'm a little down, Max runs up to Sam kisses him and says "Sam's Home!" And I am reminded, to Max he is his little brother and he is perfect.
That is about all we have been up to in the last couple months. I'll try and post more often I promise.
Sunday, August 14, 2011
Oh Crap!
Or maybe I should call it potty training 101. I have been looking forward to this time for will about a year. I have had potty chairs scattered around the house and M and M's all around. I had cute underware with characters that Max liked but what I didn't have was a kid who cared about going potty in the potty.
I had on occasion tried to potty train Max. Putting him on the potty every so often and then getting frustrated when he would sit on the potty and then pee while he was washing his hands. Then I got pregnant and I couldn't deal with that sort of mess on the floor, made me want to vomit. So the training waited.
So last Sunday on my way out of church another mom asked me what was going on and I said my son was naked at home and I wanted to go home and get the potty report, she laughed and said that's what they were doing too. I got home to find the kid in a diaper and a dad that had given up on the idea for the day. Fine.
Last Monday though I got serious! The second his little diapered butt hit the last step to the living room I removed the diaper brought the potty chair in the living room and told him if he wanted to watch his Mickey Mouse video he needed to try and potty first. Sat down and peed the first try. Yeah for you. Diaper again during nap, take it off and then had to go tend to Sam. Came down stairs and he had peed in the potty all by himself with out having to be reminded, I was so proud and so was he.
So fast forward to Sunday and we are doing pretty well. He pees and poops in the potty pretty regularly. However, I still mostly let him be naked only because we are at such an early stage I'm afraid he would sit down on the potty with his under ware on and piddle.
Apparently this task is multi step process. We were at the I have to pee and there is the potty what a coincidence. Now we are at the I have to pee where is the potty stage. We still have to get through the pull your pants down to potty, potty before you leave and finally potty standing up.
Why did I share all this? Because I could never find any positive info on this subject online. All I found was "help I have a 4 year old who won't train" or "help my kid won't poop on the potty" Never a site that gave info what worked for them. So I hope this helps someone.
.
I had on occasion tried to potty train Max. Putting him on the potty every so often and then getting frustrated when he would sit on the potty and then pee while he was washing his hands. Then I got pregnant and I couldn't deal with that sort of mess on the floor, made me want to vomit. So the training waited.
So last Sunday on my way out of church another mom asked me what was going on and I said my son was naked at home and I wanted to go home and get the potty report, she laughed and said that's what they were doing too. I got home to find the kid in a diaper and a dad that had given up on the idea for the day. Fine.
Last Monday though I got serious! The second his little diapered butt hit the last step to the living room I removed the diaper brought the potty chair in the living room and told him if he wanted to watch his Mickey Mouse video he needed to try and potty first. Sat down and peed the first try. Yeah for you. Diaper again during nap, take it off and then had to go tend to Sam. Came down stairs and he had peed in the potty all by himself with out having to be reminded, I was so proud and so was he.
So fast forward to Sunday and we are doing pretty well. He pees and poops in the potty pretty regularly. However, I still mostly let him be naked only because we are at such an early stage I'm afraid he would sit down on the potty with his under ware on and piddle.
Apparently this task is multi step process. We were at the I have to pee and there is the potty what a coincidence. Now we are at the I have to pee where is the potty stage. We still have to get through the pull your pants down to potty, potty before you leave and finally potty standing up.
Why did I share all this? Because I could never find any positive info on this subject online. All I found was "help I have a 4 year old who won't train" or "help my kid won't poop on the potty" Never a site that gave info what worked for them. So I hope this helps someone.
.
Wednesday, August 3, 2011
Busy week
One week ago today I had the bright idea of taking both the boys to the doctor because they both needed shots and I thought I would save myself a trip. They started with Max, I told them about his issues with peanuts and they gave me a epi pen. Max dropped a chair on his toe and was a wreck for the next 30 mins. meanwhile the doctor is looking at Sam with great concern. I told her about how he had been to the eye doctor and how he has Optic Nerve Coloboma, a hole between the eye and optic nerve that may dissrupt how much info the brain receives,. She continued to look over Sam all the while Max is in a heap on the floor cause his toe hurts. Long story short she refers us to a geneticist and neurologist for Sam and an allergist for Max. You see Optic Nerve Coloboma is associated with a rare genetic disease called CHARGE syndrome and the doctor thought Sammy might have it. So I am trying to digest this info and the nurse comes in to show me how to use an epi pen and to give the boys their shots. Fun for all involved let me tell you.
Phone rings that afternoon and its neurology wanting us to come in in the morning. So we pack a bag in case its a long visit to the hospital and arrive at 9:30am at Mott hospital. After a full day of echo cardiograms, kidney ultra sounds and blood work not to mention our initial neuro visit I and Sam were spent. But the good news is Sam's kidney's and heart are normal. Both organ systems can be affected by this syndrome.
Now we wait for our MRI at the end of the month and further appts in early 2012 with genetics and optomology. Their is so much we don't know at this time. We don't know how well he can see, if he will have any developmental delay or anything else. I do know that after the initial shock wore off I realized that I love my sweet little Sammy and all this other "stuff" wasn't going to affect that. He has the nicest smile.
Even though so much of what went on this week has been scary I feel blessed, blessed that this should not effect his life expectancy and blessed that we got to go home from the hospital on Thursday because many of the kids we saw that day have to stay because they are so sick.
Phone rings that afternoon and its neurology wanting us to come in in the morning. So we pack a bag in case its a long visit to the hospital and arrive at 9:30am at Mott hospital. After a full day of echo cardiograms, kidney ultra sounds and blood work not to mention our initial neuro visit I and Sam were spent. But the good news is Sam's kidney's and heart are normal. Both organ systems can be affected by this syndrome.
Now we wait for our MRI at the end of the month and further appts in early 2012 with genetics and optomology. Their is so much we don't know at this time. We don't know how well he can see, if he will have any developmental delay or anything else. I do know that after the initial shock wore off I realized that I love my sweet little Sammy and all this other "stuff" wasn't going to affect that. He has the nicest smile.
Even though so much of what went on this week has been scary I feel blessed, blessed that this should not effect his life expectancy and blessed that we got to go home from the hospital on Thursday because many of the kids we saw that day have to stay because they are so sick.
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