Sam is sick. It has been rather awful. We went to NYC for my conference, even though she was having bad teething...and then she got a stomach bug or something and was vomitting a lot. We were worried it was shunt-related, and headed home from the conference early. She is doing ok, although is really touchy and needs lots of love and attention. Going to sleep is hard for her, and needs cuddles to help her sleep. She is eating now, though, which is good, and seems to be getting better.
I hope she gets back to her old self soon, so that she can resume her walking!
She is such a sweet girl, though. I wish she had more words to communicate, but she understands so much. It is nice to get to ask her things like, "do you want a bath or do you want to go to sleep" Well, we have to ask them as two yes/no questions, but at least she knows what we mean.
Today she went to see the Pop Rockets in Leverett. We were only there for a few songs, but it was perfect. She was happy while we were there, but then was ready to go home. She is smiling and laughing agiain, which is nice.
Being a mom is nothing like I expected. I feel like every time I make her smile or laugh, especially when she is sick, that I am a successful human being. I've been struggling a little lately with the delay stuff, but really it is all going to be ok. It can be hard to see the other kids her age doing so much more, but then I look at that smile, and melt. What more can a mom want than a child that is happy?
So, not much new to report. Life marches on. I just hope I remember to cherish all these days with her, because she is getting so big so fast, and will be grown before I know it!
Saturday, March 29, 2008
Saturday, March 22, 2008
Easter Eggs and Walking
How are these two seemingly different activities related? They are two things Sam really likes!
Yesterday we colored Easter eggs. MY mom and I try to do it yearly, and this year, of course, we had to include sam. We got the kind of kit where you put drops of color onto the egg itself and then put it into a plastic baggie and then you smush the color onto the egg. This turned out to be a good idea for Sam. She loved to shake the bag with the egg in it, and smoosh the colors around. She was so delighted with making the eggs. She colored all 12! (well, maybe 11). Mom and Gammy put the colors onto the egg for her, but she did the rest. It was too cute. She was so tickled. She just gets more fun every day.
As for walking, she is just loving her walker. She will go until she can't go anymore! She loves the freedom and mobility. Mom and dad love it too. She isn't too great with her posture yet, and if she wasn't strapped to the walker she would go toppling over onto the ground. But that is ok. She is learning. She will get teh balance piece later. I just think it is great that she gets to experience what if feels like to walk. And to be independent. It must be such a great feeling, after 2 years! Just think, most kids are crawling by 8 months or so, so it has been a long time since the natural time to be independent has come. Luckily for us she has a great disposition and hasn't complained too much.
Daddy and Gege installed the swing yesterday, so today we will get to use that! She will be so happy with that, too! Mom and Gege tried to make some modifications to the walker to help her posture, but I guess there is a reason that we aren't the experts...we made it worse! Oh well, we tried. We are going to try to get one that is more fitted to her, though.
In other "equipment" news, we discussed the topic with the PT and the developmental specialist yesterday. We decided that we would def. get a new walker for her, and a bath seat, so we can give her a bath in the big tub without having to hold her. She is getting too big, and since she can't sit up yet, it is a trial to bathe her. And since she loves it, it will be nice to ahve something to make it easier on us. We also decided that we aren't getting a wheelchair at this point. Since we aren't putting her on a bus, we don't really need one. ANd since she doesn't have really high tone issues, she doesn't need the strapping of a wheelchair to keep her in it. So we are going to do a regular stroller for now, and get here a seat that she can use in school, in case she needs more support than a regular chair when she gets to school. We feel reasonably comfortable with that. We also found some cute options for the seating, too! So that makes it easier, too. They don't look so "equipment-y" and that helps.
So we were feeling pretty good about things, I think.
THen the dev. specialist mentioned the long-term possibility of putting ramps in our house and other modifications. So, here I was foolishly feeling good about things, and she drops that one on us. I didn't partucularly like it. And I guess I have made some progress because I decided that I wasn't really going to listen to her on that front, and maybe it will live in the back of my mind, but for now, I am not sure why we have to think about that. I mean, really. I know people are trying to be helpful, but they have to remember that it is our child and that everythinig they say is a sensitive topic. Well, this kid has taught us to believe in ourselves and fight every step of the way. From conception 'til now and forever more. People have been trying to put limitations on me (in terms of being able to have a child) and her from day 1. So, I guess we have showed them wrong before, and we can continue to do so! It doesn't mean it isn't hard, and doesn't take a huge toll physically and emotionally, but it certainly is worth remembering that no one knows what is possible, and only Sam will let us know when she can't do something.
In happier news, I almost forgot to report that last weekend Sam and I went shopping for her gammy's bday present, and we were in Target where I was going to get a board book for gammy to read to sammy. And so we enter the book section, Sam immediately looks up at me, with the hugest smile ever and asked for "more". It was the sweetest thing. It also made me feel pretty good about what her vision must be like that she could identify that we were in the book section. Speaking of vision, she is going to (finally) have a functional vision evaluation this summer at the Perkins School for the Blind at their low vision clinic to see what is going on and if we can do more to help her see. I personally think she is doing pretty well in that area, but am open to hearing if glasses or some such thing would help.
SO, while I can still get sad sometimes, my daily goal is to be so happy and grateful for all Sam is and will be, and to not get bogged down in the difficulties. Because all her experiences, both good and bad, has made her the person that she is now, and I wouldn't want another daughter. I used to think, "Wow, she is so great, think about how great she would have been if she had been born full-term without all the issues." And while I would love to have spared us all the difficulties that her dramatic entrance to the world has borne, I also know that she wouldn't be the same kid if she were born full-term and without all the difficulties. And who knows how much of her is the result of her brain injury. So, she is a wondferful child, she brings love and joy to so many, and will continue to do that, no matter what delays she has. That is what is really important. THere are plenty of children who were born "perfect" that aren't half the person little Sam is. So, I guess she is a keeper.
Yesterday we colored Easter eggs. MY mom and I try to do it yearly, and this year, of course, we had to include sam. We got the kind of kit where you put drops of color onto the egg itself and then put it into a plastic baggie and then you smush the color onto the egg. This turned out to be a good idea for Sam. She loved to shake the bag with the egg in it, and smoosh the colors around. She was so delighted with making the eggs. She colored all 12! (well, maybe 11). Mom and Gammy put the colors onto the egg for her, but she did the rest. It was too cute. She was so tickled. She just gets more fun every day.
As for walking, she is just loving her walker. She will go until she can't go anymore! She loves the freedom and mobility. Mom and dad love it too. She isn't too great with her posture yet, and if she wasn't strapped to the walker she would go toppling over onto the ground. But that is ok. She is learning. She will get teh balance piece later. I just think it is great that she gets to experience what if feels like to walk. And to be independent. It must be such a great feeling, after 2 years! Just think, most kids are crawling by 8 months or so, so it has been a long time since the natural time to be independent has come. Luckily for us she has a great disposition and hasn't complained too much.
Daddy and Gege installed the swing yesterday, so today we will get to use that! She will be so happy with that, too! Mom and Gege tried to make some modifications to the walker to help her posture, but I guess there is a reason that we aren't the experts...we made it worse! Oh well, we tried. We are going to try to get one that is more fitted to her, though.
In other "equipment" news, we discussed the topic with the PT and the developmental specialist yesterday. We decided that we would def. get a new walker for her, and a bath seat, so we can give her a bath in the big tub without having to hold her. She is getting too big, and since she can't sit up yet, it is a trial to bathe her. And since she loves it, it will be nice to ahve something to make it easier on us. We also decided that we aren't getting a wheelchair at this point. Since we aren't putting her on a bus, we don't really need one. ANd since she doesn't have really high tone issues, she doesn't need the strapping of a wheelchair to keep her in it. So we are going to do a regular stroller for now, and get here a seat that she can use in school, in case she needs more support than a regular chair when she gets to school. We feel reasonably comfortable with that. We also found some cute options for the seating, too! So that makes it easier, too. They don't look so "equipment-y" and that helps.
So we were feeling pretty good about things, I think.
THen the dev. specialist mentioned the long-term possibility of putting ramps in our house and other modifications. So, here I was foolishly feeling good about things, and she drops that one on us. I didn't partucularly like it. And I guess I have made some progress because I decided that I wasn't really going to listen to her on that front, and maybe it will live in the back of my mind, but for now, I am not sure why we have to think about that. I mean, really. I know people are trying to be helpful, but they have to remember that it is our child and that everythinig they say is a sensitive topic. Well, this kid has taught us to believe in ourselves and fight every step of the way. From conception 'til now and forever more. People have been trying to put limitations on me (in terms of being able to have a child) and her from day 1. So, I guess we have showed them wrong before, and we can continue to do so! It doesn't mean it isn't hard, and doesn't take a huge toll physically and emotionally, but it certainly is worth remembering that no one knows what is possible, and only Sam will let us know when she can't do something.
In happier news, I almost forgot to report that last weekend Sam and I went shopping for her gammy's bday present, and we were in Target where I was going to get a board book for gammy to read to sammy. And so we enter the book section, Sam immediately looks up at me, with the hugest smile ever and asked for "more". It was the sweetest thing. It also made me feel pretty good about what her vision must be like that she could identify that we were in the book section. Speaking of vision, she is going to (finally) have a functional vision evaluation this summer at the Perkins School for the Blind at their low vision clinic to see what is going on and if we can do more to help her see. I personally think she is doing pretty well in that area, but am open to hearing if glasses or some such thing would help.
SO, while I can still get sad sometimes, my daily goal is to be so happy and grateful for all Sam is and will be, and to not get bogged down in the difficulties. Because all her experiences, both good and bad, has made her the person that she is now, and I wouldn't want another daughter. I used to think, "Wow, she is so great, think about how great she would have been if she had been born full-term without all the issues." And while I would love to have spared us all the difficulties that her dramatic entrance to the world has borne, I also know that she wouldn't be the same kid if she were born full-term and without all the difficulties. And who knows how much of her is the result of her brain injury. So, she is a wondferful child, she brings love and joy to so many, and will continue to do that, no matter what delays she has. That is what is really important. THere are plenty of children who were born "perfect" that aren't half the person little Sam is. So, I guess she is a keeper.
Wednesday, March 12, 2008
Play Doh
So Sam went to playgroup yesterday with dad, despite being a little under the weather. She rallied, though and had some fun. She stood for a long time playing this game of putting beads (like Mardi Gras beads) into a water bottle (from like an office water cooler). She likes this game. She played it our first trip to playgroup too. Next week mom gets to go (Spring Break!) so maybe we can get some pictures.
She also had her first experience with Play Doh. She didn't do much with it, squished it in her hands. She didn't try to eat it, and that is a major accomplishment. She had a snack of apple sauce, animal crackers and milk with the other kids. She loved story time (of course!!) and the songs, and would ask for more! She spent some time on the rocket ship (I think I described it before) that is a rocking rocket. She also was able to join the other kids in the little boat that rocks while the teacher sings "Row row row your boat" and rocks the kids.
They did a sensory thing of filling a big storage bag with water (partially) so it was squishy so that the kids could feel the squishyness, and she thought that was kinda neat.
She got her McKie splint, and she really likes wearing it. She was sad last night when grammy had to take it off her (it was our support group night, and our regular babysitter couldn't sit, so gammy and grampy babysat). She smiles when you put it on her. It is so sweet. It is a cute splint, and I will get a picture, but it is amazing how much she likes it.
OK, have to get ready for the day.
She also had her first experience with Play Doh. She didn't do much with it, squished it in her hands. She didn't try to eat it, and that is a major accomplishment. She had a snack of apple sauce, animal crackers and milk with the other kids. She loved story time (of course!!) and the songs, and would ask for more! She spent some time on the rocket ship (I think I described it before) that is a rocking rocket. She also was able to join the other kids in the little boat that rocks while the teacher sings "Row row row your boat" and rocks the kids.
They did a sensory thing of filling a big storage bag with water (partially) so it was squishy so that the kids could feel the squishyness, and she thought that was kinda neat.
She got her McKie splint, and she really likes wearing it. She was sad last night when grammy had to take it off her (it was our support group night, and our regular babysitter couldn't sit, so gammy and grampy babysat). She smiles when you put it on her. It is so sweet. It is a cute splint, and I will get a picture, but it is amazing how much she likes it.
OK, have to get ready for the day.
Tuesday, March 11, 2008
Talking Girl!
So Sam really wants to talk. On Friday last week her developmental specialist came to work with her, and I was just finishing giving her breakfast, took her out of her high chair and sat her on my lap. I was then telling Martha (the specialist) about all the great things Sam has been doing. While I was talking Sam started to talk too. I confess I wasn't paying too much attention, but then Martha exclaimed, "What did she just say?" I felt bad that I didn't know. But then Martha said "She just said mommy." Wow! I have been waiting forever for that and I missed it! Oh well, hopefully it will happen again! It is just great that she made the "m" sound!
So then on Saturday mom and Dad wanted to show her Sesame Street. So we were watching an episode, and one of the characters (Telly, for those in the know) was reading a book about how to be a mouse (for the part he would play in "Hickory dickory dock") and he said, "A mouse says Eek. Eek." And Sam said "Eek" and started to laugh. We were amazed.
So on Sunday we let her watch her Noodlebug video (no, we don't just stick her in front of the TV all the time!) and she was watching the Backyard Bugs one, and Fraser heard her say "bee" for bee, she tried to say "quatro" when they were counting the bees in Spanish, and she also said "ail" for snail, and "worm"! So this girl is just ready to go! I hope it starts to take off even more!
In non-speech news, her McKie splint came yesterday. We put it on her (she smiled at it!) and her hand instantly opened up. She started doing more with her right hand immediately. We were amazed. We left it on for 30 minutes (it was getting to be bed time) and even after we took it off, her hand remained so much more open. It seems to have really brought a lot of awareness to that hand. It is fascinating.
So we will see what teh swing does...when it gets here!
Today is playgroup, but she has been really sleepy and not herself still, so we wil see if they make it there. Unfortunately mom has to go to work!
So then on Saturday mom and Dad wanted to show her Sesame Street. So we were watching an episode, and one of the characters (Telly, for those in the know) was reading a book about how to be a mouse (for the part he would play in "Hickory dickory dock") and he said, "A mouse says Eek. Eek." And Sam said "Eek" and started to laugh. We were amazed.
So on Sunday we let her watch her Noodlebug video (no, we don't just stick her in front of the TV all the time!) and she was watching the Backyard Bugs one, and Fraser heard her say "bee" for bee, she tried to say "quatro" when they were counting the bees in Spanish, and she also said "ail" for snail, and "worm"! So this girl is just ready to go! I hope it starts to take off even more!
In non-speech news, her McKie splint came yesterday. We put it on her (she smiled at it!) and her hand instantly opened up. She started doing more with her right hand immediately. We were amazed. We left it on for 30 minutes (it was getting to be bed time) and even after we took it off, her hand remained so much more open. It seems to have really brought a lot of awareness to that hand. It is fascinating.
So we will see what teh swing does...when it gets here!
Today is playgroup, but she has been really sleepy and not herself still, so we wil see if they make it there. Unfortunately mom has to go to work!
Friday, March 7, 2008
WOW!
I am just amazed by that girl. I cannot believe what a day she had. She had her gait training again. She went with her gramma and mommy missed it, but I got a great report! I did talk to the PT after the appointment to hear about it. Apparently they spent smoe time swinging again. Sam saw the swing and just lit up she was so excited (this is good news...). Then they did some stand up/sit down exercised with the ladder. Sam was having a lot of difficulty grasping the bar with her right hand, as usual. That hand just wants to stay a fist. We have been working on it and getting some progress, but it still has a long way to come. So my mom (gramma) asked the PT if there was something they could put on her hand to help keep it open. Being a nurse, gammy was familiar with stroke patients and the accommodations that they had for them, so she thought there might be something similar for Sam. The PT perked up and sai d"Oh! She doesn't have a splint?!" And she ran and got a splint for Sam's hand. Immediately Sam hand opened up and grabbed the bar herself. This splint is really cool...it is a little neoprene strap that goes around her thumb and palm. I read a little about it (when I was ordering one!) and learned that they were made by an OT who wanted to help her patients grasp things better. She got it patented, and earned her Master's degree with it! It is amazing. (For more info, feel free to visit www.mckiesplints.com)
So, after playing a bit, they headed to the treadmill. Now, typically the PT will get Sam on the treadmill and then do some assisted steps with her to "warm her up" and remind her what they are doing. This time Arlene decided to just put her on and see what happens. She grabbed the bar in front of her, with BOTH hands, and when Arlene turned on the treadmill she started walking all by herself! She took 30 steps! With no prompting! And she held on the bar and kept her head in the center. It is just amazing. These 2 contraptions (the swing and the splint) have made such a difference. Arlene could not get over how much progress she had made in 2 weeks.
Then, after the session, Arlene was taking her off the treadmill and put her on the mat, and this is when mom showed up. I saw Sam being placed on her belly, and then she rolled and rolled and rolled until she would've fallen off the mat. IT was amazing. She has never done that before. I didn't even know that was my daughter. I moved her over to the center of the mat and she started rolling some more! I can't even describe what this did for me.
So, when we got home, she ate a BIG lunch and took a good nap, and mom ordered not only a splint but also a swing! The swings are a bit on the spendy side, but the benefits cannot be beat! I am so impressed. This will surely make the single biggest difference in her therapy. And it's fun.
A lot fo the research on the vestibular system and vestibular therapy is quite impressive and started with work with astronauts. The vestibular system regulates how your body responds to gravity, so it makes sense that astronauts would need vestibular training to be able to function in different gravitational atmospheres. It has been widely used for balance therapy for a variety of issues. It is just mind-blowing. And the most amazing thing is how much the vestibular system can be changed and developed with some simple therapies (like swinging!). So, I am really hopeful for how this will help Sam.
I always knew that Sam would do great things and amaze us all. Now it feels like it will happen sooner than I thought! Not that she does't amaze me every day with what she can already do, but I suspect we will be seeing new levels of progress now!
Love to you all.
So, after playing a bit, they headed to the treadmill. Now, typically the PT will get Sam on the treadmill and then do some assisted steps with her to "warm her up" and remind her what they are doing. This time Arlene decided to just put her on and see what happens. She grabbed the bar in front of her, with BOTH hands, and when Arlene turned on the treadmill she started walking all by herself! She took 30 steps! With no prompting! And she held on the bar and kept her head in the center. It is just amazing. These 2 contraptions (the swing and the splint) have made such a difference. Arlene could not get over how much progress she had made in 2 weeks.
Then, after the session, Arlene was taking her off the treadmill and put her on the mat, and this is when mom showed up. I saw Sam being placed on her belly, and then she rolled and rolled and rolled until she would've fallen off the mat. IT was amazing. She has never done that before. I didn't even know that was my daughter. I moved her over to the center of the mat and she started rolling some more! I can't even describe what this did for me.
So, when we got home, she ate a BIG lunch and took a good nap, and mom ordered not only a splint but also a swing! The swings are a bit on the spendy side, but the benefits cannot be beat! I am so impressed. This will surely make the single biggest difference in her therapy. And it's fun.
A lot fo the research on the vestibular system and vestibular therapy is quite impressive and started with work with astronauts. The vestibular system regulates how your body responds to gravity, so it makes sense that astronauts would need vestibular training to be able to function in different gravitational atmospheres. It has been widely used for balance therapy for a variety of issues. It is just mind-blowing. And the most amazing thing is how much the vestibular system can be changed and developed with some simple therapies (like swinging!). So, I am really hopeful for how this will help Sam.
I always knew that Sam would do great things and amaze us all. Now it feels like it will happen sooner than I thought! Not that she does't amaze me every day with what she can already do, but I suspect we will be seeing new levels of progress now!
Love to you all.
Monday, March 3, 2008
Small Victories
For the first time since Sam was born, she doesn't need to take iron supplements! YAY! I know it isn't a huge deal, really, but to us it is. One less med to give, that is always nice. One less med to remember to refill, that is even better!
So we are down to only 2 meds (phenobarb for her seizures and zantac for her reflux).
Tomorrow is playgroup day. I hope it goes well! I am sure she will love it. Last week was a little rough, since she had just started her new dose of phenobarb, because she is bigger, and it makes her really loopy and out of it. Now she has adjusted to it, so it should be better.
Oh, and she is gaining weight like a champ! She gained 1 lb in 3 days! WOW! Amazing. We think that it is because her tone in her legs is getting better and so she isn't burning off the calories as fast. I hope so, anyway. She does seem to be getting better in the legs. That would be so great.
So that is our big news. Not much else to report. She continues to be the happy little girl we adore!
So we are down to only 2 meds (phenobarb for her seizures and zantac for her reflux).
Tomorrow is playgroup day. I hope it goes well! I am sure she will love it. Last week was a little rough, since she had just started her new dose of phenobarb, because she is bigger, and it makes her really loopy and out of it. Now she has adjusted to it, so it should be better.
Oh, and she is gaining weight like a champ! She gained 1 lb in 3 days! WOW! Amazing. We think that it is because her tone in her legs is getting better and so she isn't burning off the calories as fast. I hope so, anyway. She does seem to be getting better in the legs. That would be so great.
So that is our big news. Not much else to report. She continues to be the happy little girl we adore!
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