Well we got to see Dr Elsas yesterday. They must have been running behind something fierce because we were there for over 2 hours. That's a first for us there. But Ian does need the eye muscle surgery like I thought would happen. The good news is is that it isn't an emergent surgery. We just need to decide when to do it. Hopefully it will improve the way he holds his head when he sits and walks. He holds his head back to focus his eyes. His current prescription is helping but his eyes still cross when he looks up even with his glasses.
The surgery would be outpatient and Dr Elsas is one of the best but it does mean putting him under general anesthesia which is always scary for us and him. Luckily Perry was asking the questions because eye surgery freaks me out. I have a thing about my eyes. Plus Ian was being Ian and getting into everything while the dr was talking.
So it looks as if Ian will have the surgery this summer. We want to go ahead and get it done before sis arrives and he starts school and while he still has his Medicaid to help pick up the copays. So now we just have to figure out when and get it scheduled.
That's all for now. Hope everyone has a great Memorial Day.
Saturday, May 23, 2009
Friday, May 22, 2009
Lil Sis Update
Well, we went to the dr yesterday for the dreaded 1 hour glucose test. The good news is that I didn't blow it out of the water like I did with Ian. My level with him was 223 and with her 143. Unfortunately, I do still have to do the 3 hour one next week since I was borderline with her. Hopefully, I will pass that one like I did with him. I hate that test. I'm an easy stick for blood work but they always bruise the crap out of me and I look like a drug addict. So Perry now has to take the morning off so that he can stay with Ian because no children are allowed at the lab. How do people manage that if they don't have daycare or family or a sitter?
That's our other challenge is finding a sitter for Ian. All of our family is 3 hours away and I am very picky about who will be Ian's sitter or even his lil sister's. I think in today's world you have to be. I have a lot of contacts unfortunately they are all in the Auburn area and no one will come to Tallassee because it is 'too far away'. We run into that with other services as well from Montgomery or Auburn. You would think I lived in Siberia or something. We have a possibility for the summer but no one for the fall. I'm worried that lil sis will make a surprise early appearance and Perry won't be able to be in the OR with me as he is baby sitting Ian or Ian will be at school and we won't have anyone to pick him up. Good grief this is getting stressful just thinking about it.
Oh well, got to get ready to go to Bham for the afternoon. Ian has an eye doctor appt. We may find out if he needs eye surgery today. Hopefully not, but if it will help with him focusing his eyes and stop them crossing and being lazy we will do it. We are hoping that his eyes are part of why he usually holds his head back when he is walking. It seems he has an 'A' pattern to focus his eyes. He leans his head back to focus on some objects.
That's our other challenge is finding a sitter for Ian. All of our family is 3 hours away and I am very picky about who will be Ian's sitter or even his lil sister's. I think in today's world you have to be. I have a lot of contacts unfortunately they are all in the Auburn area and no one will come to Tallassee because it is 'too far away'. We run into that with other services as well from Montgomery or Auburn. You would think I lived in Siberia or something. We have a possibility for the summer but no one for the fall. I'm worried that lil sis will make a surprise early appearance and Perry won't be able to be in the OR with me as he is baby sitting Ian or Ian will be at school and we won't have anyone to pick him up. Good grief this is getting stressful just thinking about it.
Oh well, got to get ready to go to Bham for the afternoon. Ian has an eye doctor appt. We may find out if he needs eye surgery today. Hopefully not, but if it will help with him focusing his eyes and stop them crossing and being lazy we will do it. We are hoping that his eyes are part of why he usually holds his head back when he is walking. It seems he has an 'A' pattern to focus his eyes. He leans his head back to focus on some objects.
Sunday, May 17, 2009
Saturday, May 16, 2009
Lil Boy Heaven
There was a cool event in Opelika today, Touch a Truck. Sounds like exactly what it is. The kids get to climb in and play on and touch some cool vehicles. I know that the big boys there were having just as much fun. The coolest thing... it was free. The price of admission was a new car/truck toy for Toys for Tots.
Ian was like a kid in a candy store. He did not know which vehicle to go to first. He would point and off and we would go to fulfill his wish. The scariest thing is that he knows what to do with steering wheels and all the levers on the vehicles. All the horns and sirens didn't scare him either.
Ian saw & sat in the following: a lifeflight helicopter( we got to see it take off as well, way cool), a sheriff's car, a mobile police van ( he started climbing right into the drivers seat), a UPS truck, a mail truck, a school bus, a fire truck, a tractor, a forklift, a concrete truck, police vehicles, ambulance (no negative reaction to that either), a semi truck, a front end loader, military vehicles, and the coolest was the ride in the front end loader and make it go around and extend the bucket ( I think the big boys were a little jealous that they didn't get to ride).
He was having a blast at this event. He was just walking and walking and walking and walking. It was such a blast seeing the smile on his face every time you put him in a truck.
Bathroom Hiding & Preschool & Speech & More
OK, I've opened our bathroom cabinet to the world now. LOL. Please excuse all the unmentionables in it:) Ian has discovered how much fun it is too hide in the cabinet. He will close the doors and then I have to 'find' him. He has also discovered that he can close the doors and then the drawers look as if they magically opening. Yes I have lost him in the house and found him in the cabinet pushing the drawers open from the back. I have to be careful when's he quiet because he is definitely getting into TROUBLE!!!
Ian went to his last speech appt for this school year yesterday. We also went early so he could sit in on circle time in Mrs. Creel's preschool class. Usually, he justs goes in and couldn't care less if I'm there or not. But of course not yesterday. He was the clingy kid.
I has planned to just drop him off and then go sit in the teacher lounge and wait until after his speech appt. But Mrs. Creel had me stay for a little bit to keep him safe in case he fell out of his chair. I finally left and everything was fine until Ms.Lee came and got him for speech. He saw me and ran up and grabbed my leg saying Momma. I had to take him into speech which he usually will go to without me. I ended up sneaking out of that too and yesterday was fun. It was a little end of year party with juice and snack and Disney.
I like to have the face to face with the speech therapist, especially as she is figuring out everything with him that works and doesn't work. Which I have mentioned but got the look of but you are Mom and I'm the professional and know more than you. So that has been interesting watching her figure out that he doesn't like to sit still and learns more by doing than just sitting and her trying to get him to repeat what she says. Yeah Mom was right what do you know about that.
Sorry, tangent. I do those quite frequently. Anyway, in dropping Ian off for circle time, Mrs. Creel had mentioned talking to Holly, the PT ( who doesn't have a clue and I'm being polite here) For the LP moms, NO she is not allowed to touch Ian. She is only allowerd to observe him and assess his skill progression and let me know what I need to work on with him. I know that I have mentioned the dreaded chair that they put him in. It's up high, he can't get in it by himself, and it has a tray on it that. So yes it is a high chair. They do have it padded to get him to 90/90 sitting but my beef with it is that it is a visual cue that he is a baby. They are saying it is for safety because he is not stable in the trunk and could fall out of the little blue chair that all the other kids sit in and this chair will allow him to reach items. Yeah, how do you know he will fall out of the little blue chair. You haven't given him the opportunity to sit in it and it would be easy to modify with a cushion of some kind and add a foot rest. Of course he can reach items in the high chair, you are going to put them on the tray for him. Perry doesn't understand how this chair makes me feel and I think it is because he hasn't seen it. I had a total breakdown in talking with the PT at his last consult about that d**n chair.
So am I overreacting or not. I don't know. In mentioning it at our district meeting's parent meeting, I got the feel from the other parents that I wasn't. But I don't know. I walk such a tightrope on trying not to be such an overprotective mom( I'm a product of that and know the damage it can cause to your self confidence) but also in having to be protective because of everything we have been through with him and to being his advocate. It's hard to believe that we let him out of the house and let him get dirty now when we would constantly be sanitizing everything and everybody when he came home up until the trach came out. It's amazing how much difference a year makes.
It is hard to believe it has been a year since the trach came out. He went from not walking to walking and now talking. Even harder to believe that he has only been walking for 7 months. His speech is coming on fast. He is such a little parrot. Don't know if the tubes are part of it as he started saying more the week before they went in and hasn't stopped. Hopefully by the time school starts he will be able to talk some sentences. That will take some of the worry off my mind.
Sorry these jump around so much but that's how my mind works. Perry hates having conversations with me as I do the same thing.
So hopefully, lil sister won't make an appearance before his first day of school. I really don't want to miss that and I would like him to maybe get the routine before she arrives. He will going 2 times a week in the morning, Tues & Fri, and will continue to have speech. I'm also going to keep him in his playgym class for one more year. So Ian will have a busy year but hopefully he will handle it and having a new lil sister around (that's another issue in itself)
Thanks for reading this twisting convuluted post. Now you know what's like to be in mind everyday. Scary!!!
I has planned to just drop him off and then go sit in the teacher lounge and wait until after his speech appt. But Mrs. Creel had me stay for a little bit to keep him safe in case he fell out of his chair. I finally left and everything was fine until Ms.Lee came and got him for speech. He saw me and ran up and grabbed my leg saying Momma. I had to take him into speech which he usually will go to without me. I ended up sneaking out of that too and yesterday was fun. It was a little end of year party with juice and snack and Disney.
I like to have the face to face with the speech therapist, especially as she is figuring out everything with him that works and doesn't work. Which I have mentioned but got the look of but you are Mom and I'm the professional and know more than you. So that has been interesting watching her figure out that he doesn't like to sit still and learns more by doing than just sitting and her trying to get him to repeat what she says. Yeah Mom was right what do you know about that.
Sorry, tangent. I do those quite frequently. Anyway, in dropping Ian off for circle time, Mrs. Creel had mentioned talking to Holly, the PT ( who doesn't have a clue and I'm being polite here) For the LP moms, NO she is not allowed to touch Ian. She is only allowerd to observe him and assess his skill progression and let me know what I need to work on with him. I know that I have mentioned the dreaded chair that they put him in. It's up high, he can't get in it by himself, and it has a tray on it that. So yes it is a high chair. They do have it padded to get him to 90/90 sitting but my beef with it is that it is a visual cue that he is a baby. They are saying it is for safety because he is not stable in the trunk and could fall out of the little blue chair that all the other kids sit in and this chair will allow him to reach items. Yeah, how do you know he will fall out of the little blue chair. You haven't given him the opportunity to sit in it and it would be easy to modify with a cushion of some kind and add a foot rest. Of course he can reach items in the high chair, you are going to put them on the tray for him. Perry doesn't understand how this chair makes me feel and I think it is because he hasn't seen it. I had a total breakdown in talking with the PT at his last consult about that d**n chair.
So am I overreacting or not. I don't know. In mentioning it at our district meeting's parent meeting, I got the feel from the other parents that I wasn't. But I don't know. I walk such a tightrope on trying not to be such an overprotective mom( I'm a product of that and know the damage it can cause to your self confidence) but also in having to be protective because of everything we have been through with him and to being his advocate. It's hard to believe that we let him out of the house and let him get dirty now when we would constantly be sanitizing everything and everybody when he came home up until the trach came out. It's amazing how much difference a year makes.
It is hard to believe it has been a year since the trach came out. He went from not walking to walking and now talking. Even harder to believe that he has only been walking for 7 months. His speech is coming on fast. He is such a little parrot. Don't know if the tubes are part of it as he started saying more the week before they went in and hasn't stopped. Hopefully by the time school starts he will be able to talk some sentences. That will take some of the worry off my mind.
Sorry these jump around so much but that's how my mind works. Perry hates having conversations with me as I do the same thing.
So hopefully, lil sister won't make an appearance before his first day of school. I really don't want to miss that and I would like him to maybe get the routine before she arrives. He will going 2 times a week in the morning, Tues & Fri, and will continue to have speech. I'm also going to keep him in his playgym class for one more year. So Ian will have a busy year but hopefully he will handle it and having a new lil sister around (that's another issue in itself)
Thanks for reading this twisting convuluted post. Now you know what's like to be in mind everyday. Scary!!!
Thursday, May 7, 2009
Ian and Lil Sister Update
Ok, so I'm not really great at keeping this blog updated but I have a very active 3 year old boy who is constantly on the move. What can I say?
Ian got his first set of tubes on Monday, May 4. I do have to say that that was the fastest surgery he has ever had. Luckily, they could just use the gas and not intubate him or give him an IV. We were in and out of Children's in Bham in 3 hours which is a miracle for us. That doesn't include the 2 hour trip home both ways. By the time we were home, he was his old self. He had sucked down half of my chocolate milkshake that we had for lunch on the way back home and then he and I slept the rest of the trip home.
We have reached 22 weeks with his lil sister. I am getting more and more paranoid as it gets closer to 25/26 weeks. That's when everything changed with Ian. I am hoping to get to 32 weeks this time. I've been taking it as easy as I can this pregnancy as we think my stress level had a lot to do with Ian's coming early. We are know in the process of trying to find names for our little girl. This is hard. I have names that we like but that don't flow well with Bankester and we really want a short first name since our last name is so long.
Ian went to a Bday party the weekend before his tubes and had a blast. Ran into some kids that were having a hard time believing he was 3 especially when there was another 3 year old right beside him. Oh well, Ian's just little and definitely doesn't let it stop him. At the beginning of the party, he was dragging me everywhere to play. At the end, I would look up and see him in his orange shirt heading off for a walk and not looking back. He definitely is starting to get braver in the world.
I always feel like a super overprotective mom whenever he is on a playground. I don't want him to fall off the equipment and it seems like he is always drawn to the sides where the holes are for the slide pole or other climbing apparatus is that he is so not ready for. Plus his balance is still a little wonky. Don't know if that his just from the achondroplasia or if his eye issues are contributing.
Got to go as my little parrot is asking for a book. Got to love that one of his words is Book. Warms this bookworm's heart. Guess I've done something right:)
Until next time.
Ian got his first set of tubes on Monday, May 4. I do have to say that that was the fastest surgery he has ever had. Luckily, they could just use the gas and not intubate him or give him an IV. We were in and out of Children's in Bham in 3 hours which is a miracle for us. That doesn't include the 2 hour trip home both ways. By the time we were home, he was his old self. He had sucked down half of my chocolate milkshake that we had for lunch on the way back home and then he and I slept the rest of the trip home.
We have reached 22 weeks with his lil sister. I am getting more and more paranoid as it gets closer to 25/26 weeks. That's when everything changed with Ian. I am hoping to get to 32 weeks this time. I've been taking it as easy as I can this pregnancy as we think my stress level had a lot to do with Ian's coming early. We are know in the process of trying to find names for our little girl. This is hard. I have names that we like but that don't flow well with Bankester and we really want a short first name since our last name is so long.
Ian went to a Bday party the weekend before his tubes and had a blast. Ran into some kids that were having a hard time believing he was 3 especially when there was another 3 year old right beside him. Oh well, Ian's just little and definitely doesn't let it stop him. At the beginning of the party, he was dragging me everywhere to play. At the end, I would look up and see him in his orange shirt heading off for a walk and not looking back. He definitely is starting to get braver in the world.
I always feel like a super overprotective mom whenever he is on a playground. I don't want him to fall off the equipment and it seems like he is always drawn to the sides where the holes are for the slide pole or other climbing apparatus is that he is so not ready for. Plus his balance is still a little wonky. Don't know if that his just from the achondroplasia or if his eye issues are contributing.
Got to go as my little parrot is asking for a book. Got to love that one of his words is Book. Warms this bookworm's heart. Guess I've done something right:)
Until next time.
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