It's strange. It feels like overnight, we don't talk about feeding anymore. Kristen has really become a true eater. It has only taken a full 5 years...lol! She asks for salad, she eats sandwiches, she won't touch beef with a ten foot pole...lol! I've tried tricking her when I give her the burger into thinking it is just bun and cheese, her favorite, but she smells it! She pretty much smells everything first. But that's ok. Last week it was a granola bar! She chews gum!!! REALLY, gum!!!??? Amazing. She can pack back a half a box of KD in one sitting. And does she eat! Where does it go?! She's still only on the 3% for weight, and 8% for height. But at least she's on the chart! She was under to about the -10% for the longest time. But she has now maintained for the last 2 years on this nice curve. Like everything with her, she did it in her own time.
I just go back in my head remembering all of the challenges that we had. Man, I guess I just didn't realize how tough it was. Getting her to eat with a spoon. Drinking from a straw. Using a fork. Heck, just self feeding period! And the smallest of small baby steps that it has taken to get here. She used to gag on EVERYTHING! Now it's the opposite...lol! She actually overstuffs her mouth, not good either, but she's not leaving it there to be pocketed like before, she's actually swallowing it. The tricks that we have used with her! And she's now just flying high. I don't even have to make seperate meals for her. It used to be such a challenge some times wondering, what do I feed her tonite?!
Thursday, January 27, 2011
Sunday, January 23, 2011
Where things are at right now
Kenny has seen the neurosurgeon. He doesn't need to see him for another 6-9 months...of course unless i notice anything. He has officially been off of his vigabatrin now for a full week!!! So far so good! He's still not really gross motorly moving, but he's getting stronger.
Joe is now sight reading words! WOW! that's been a long time coming for him. He is also staring spelling tests where he is expected to just write the first sound he hears. Well at home we practice the whole word. He's doing well with that too now! He lost his first tooth careof the dentist on Thursday. it had been deaf for awhile, and got absessed so out it came.
Kristen is now replacing her coil on her head for her implant! WOW. She is trying so hard to communicate with other's. She doesn't scream when at skating lessons anymore, and actually loves it! She doesn't scream at swimming lessons anymore and actually loves it! lmao! She is also chewing all of her food pretty much now! Feeding issues....well sometimes i think not! She even chews gum now!
Courtney is just our little turd! lol. She is so bright and challenges us all the time. She's so independant and doesn't realize that she's not even quite 3 yet!! And the language that she uses is so complex! Amazing to see!
People ask how we do it. I have never used the word can't...thought it in my head, but never used anything as an excuse! Exposure exposure exposure
I treat my kids 'normal' whatever that may be. I am also never wanting people to think that there situation is nothing compared to what I deal with daily. What people experience in their homes is different that what I do, and it is ok for anyone to feel frustration at any time. I am not hear to inspire, or over shadow, or make you look bad. I'm here to be my kids mommy, and be the best mommy I can be!
Joe is now sight reading words! WOW! that's been a long time coming for him. He is also staring spelling tests where he is expected to just write the first sound he hears. Well at home we practice the whole word. He's doing well with that too now! He lost his first tooth careof the dentist on Thursday. it had been deaf for awhile, and got absessed so out it came.
Kristen is now replacing her coil on her head for her implant! WOW. She is trying so hard to communicate with other's. She doesn't scream when at skating lessons anymore, and actually loves it! She doesn't scream at swimming lessons anymore and actually loves it! lmao! She is also chewing all of her food pretty much now! Feeding issues....well sometimes i think not! She even chews gum now!
Courtney is just our little turd! lol. She is so bright and challenges us all the time. She's so independant and doesn't realize that she's not even quite 3 yet!! And the language that she uses is so complex! Amazing to see!
People ask how we do it. I have never used the word can't...thought it in my head, but never used anything as an excuse! Exposure exposure exposure
I treat my kids 'normal' whatever that may be. I am also never wanting people to think that there situation is nothing compared to what I deal with daily. What people experience in their homes is different that what I do, and it is ok for anyone to feel frustration at any time. I am not hear to inspire, or over shadow, or make you look bad. I'm here to be my kids mommy, and be the best mommy I can be!
A run down of our weekly AVERAGE schedule
I've been asked by a couple of people why I haven't blogged lately...or where are my posts...lol...well I thought that I'd bring you into an average daily, weekly schedule. Hold on tight cause it's quite the ride...lol
Monday's
6am-wake up
8:20am-get everyone out the door to take Joe to school
8:50am-load up the van to drop Courtney off at pre-school for 9am
9am-drive Kristen to the BC family hearing resource center for her PALS program (a preschool like program for the deaf and hard of hearing)for 9:30am
(recently I've had my Behavioural interventionist picking up Courtney and Kristen to take them where they need to go so that I can go back to the school with Kenny to help with the reading program at Joe's class.)
11:30am Pick up Courtney from school.
1pm Kristen arrives home
2:20pm go to pick up Joe from school
4:30pm take Joe and Kristen to Skating lessons for 5pm
6:30pm get ready to go to Rally with my Tupperware ladies.
Please take note that in between the actual drop-off/pick-up times there are feeds for Kenny, and the fact that he may not let me put him down, and of course all of the 'normal' daily things that need to happen around the house ie. dishes, or phoneing to do follow-up appointments for ONE of the kids...lol
Tuesday
6am wake up
8:20am take Joe to school
9am take Kristen to PALS
10am take Kenny with Courtney to Physio, and physio swim
Kristen is dropped off right from PALS to preschool at 12:30 by her BI (thank goodness for her!!! She is my heaven sent of sanity!)
2:20pm pick up joe for school
2:50pm go to pick Kristen up from Pre-school
3pm alternating Tuesday's Kristen has speech therapy
once a month I do the PAC meetings, (PTA for my American friends :)) at 7pm
Wednesday
6am wake up
8:20 drop Joe off at school
9am drop Courtney off at preschool
9:30 Kristen to PALS
10am sometimes IDP comes in once a month, or I may use this time to observe Kristen in the classroom for a bit, or visit and connect with other parents.
11:30am pick up Courtney from preschool
1pm Kristen is home
2:20 pick up Joe
4:30pm skating for the older two, all three of the oldest one's in another week!
7pm PEER group once a month. A group that is there to support parents for children going into Kindergarden for the deaf and hard of hearing.
Thursday
6am wake up
8:20 drop off Joe
12:30 take Kristen to preschool
2:20 pick up Joe
3pm Pick up Kristen
A little bit of a quieter day, sometimes there may be a morning appointment with OT, or pediatrition or specialists at children's etc.
Friday
6am wake up
8:20 joe to school
9am Kristen to preschool
11:30 pick up Kristen
meet at McD's or someones house for a weekly play date for the girls.
2:20 pick up Joe, and once in a while a friend from school will come to play
Saturday
7am wake up
9am swimming lessons for the older three
the rest of the day will depend on visiting with family or birthday parties or me doing a Tupperware party
Sunday
Just depends on the weekend, sometimes can be just as busy...lately it has been!
ONe day it will slow down right?!! IT has too! lol! I do it all in the name of love for my kids! And because of it, they are doing soooo well!
Monday's
6am-wake up
8:20am-get everyone out the door to take Joe to school
8:50am-load up the van to drop Courtney off at pre-school for 9am
9am-drive Kristen to the BC family hearing resource center for her PALS program (a preschool like program for the deaf and hard of hearing)for 9:30am
(recently I've had my Behavioural interventionist picking up Courtney and Kristen to take them where they need to go so that I can go back to the school with Kenny to help with the reading program at Joe's class.)
11:30am Pick up Courtney from school.
1pm Kristen arrives home
2:20pm go to pick up Joe from school
4:30pm take Joe and Kristen to Skating lessons for 5pm
6:30pm get ready to go to Rally with my Tupperware ladies.
Please take note that in between the actual drop-off/pick-up times there are feeds for Kenny, and the fact that he may not let me put him down, and of course all of the 'normal' daily things that need to happen around the house ie. dishes, or phoneing to do follow-up appointments for ONE of the kids...lol
Tuesday
6am wake up
8:20am take Joe to school
9am take Kristen to PALS
10am take Kenny with Courtney to Physio, and physio swim
Kristen is dropped off right from PALS to preschool at 12:30 by her BI (thank goodness for her!!! She is my heaven sent of sanity!)
2:20pm pick up joe for school
2:50pm go to pick Kristen up from Pre-school
3pm alternating Tuesday's Kristen has speech therapy
once a month I do the PAC meetings, (PTA for my American friends :)) at 7pm
Wednesday
6am wake up
8:20 drop Joe off at school
9am drop Courtney off at preschool
9:30 Kristen to PALS
10am sometimes IDP comes in once a month, or I may use this time to observe Kristen in the classroom for a bit, or visit and connect with other parents.
11:30am pick up Courtney from preschool
1pm Kristen is home
2:20 pick up Joe
4:30pm skating for the older two, all three of the oldest one's in another week!
7pm PEER group once a month. A group that is there to support parents for children going into Kindergarden for the deaf and hard of hearing.
Thursday
6am wake up
8:20 drop off Joe
12:30 take Kristen to preschool
2:20 pick up Joe
3pm Pick up Kristen
A little bit of a quieter day, sometimes there may be a morning appointment with OT, or pediatrition or specialists at children's etc.
Friday
6am wake up
8:20 joe to school
9am Kristen to preschool
11:30 pick up Kristen
meet at McD's or someones house for a weekly play date for the girls.
2:20 pick up Joe, and once in a while a friend from school will come to play
Saturday
7am wake up
9am swimming lessons for the older three
the rest of the day will depend on visiting with family or birthday parties or me doing a Tupperware party
Sunday
Just depends on the weekend, sometimes can be just as busy...lately it has been!
ONe day it will slow down right?!! IT has too! lol! I do it all in the name of love for my kids! And because of it, they are doing soooo well!
Friday, December 17, 2010
Follow-up with the Neurosurgeon
Kenny saw the Neurosurgeon yesterday. He said that in reality there is actually more fluid on his brain than before, but it's obviously moving with the ETV proceedure that they did. But there may be more fluid too, because with such significant injury to the brain, it doesn't grow as a typical brain would. So his head growth has slowed...thank goodness. It's like a puppy growing into it's paws...Kenny is growing into his head! LOL! He had his RSV shot today. You know it's bad, when you go to Surrey Memorial, and the nurses remember you from when you brought a kid in 3 years ago for RSV shots!!! So we go back in 3 weeks, and then every 4 until the end of flu season! We are slowly getting ready for Christmas! I'm so ready for the break from appointments! If I were to write down an average week out for people, I think it'd make their head spin! LOL. Maybe I will in the new year!
Friday, December 10, 2010
Interesting informations!
I got a call from Bio-Chemical disease control for Kenny on Tuesday. They are now asking for blood work from Gary and I. If you look at the requistion, it shows that they are looking at 1p31.1, I assume a specific gene. What this means, I don't know. This waiting game sure makes me sit on egg shells. I didn't really care what or if they found anything when we began this with them. But now that there may be some sort of answer the curiosity is just killing me!!!
Kristen has been registered for Kindergarden!! WOW! My little CHERUB sure has come a long way! We also had mapping for her CI on Wednesday, so I was able to ask about how to go about and when to use the FM system with her. I do want it for her hearing aid side, but I'm not wanting to use it with her CI side. I was always under the impression that because it is a different was of listening, (different than hearing aid) that we need to allow her to hear as natural as possible. I did try the FM system and had found that it just confused her. Really, when she wears her CI, it's like she's hearing like you and I. Her brain has worked out the important information and knows what to listen for, well with voices anyways. I can be in a gym, and she can hear me call for her from half way across! So I wanted to see if she would be fine without the FM in school first, before we try it out. Well her audiologist stated that they have done more research on CI's with FM systems. Unless Kristen can tell me if there is interference then no. It also takes away alot of the background noise when it's on as well. They can't say how many decibles, but in a Kindergarden setting, she may miss out on peers conversations. They are also finding that the FM with the CI would be more useful in lecture type settings. Where it's all about information and direct note taking learning. I am pleased with these answers as this is how we use the implant anyways, like an aid, but like she's hearing when it is on. Don't get me wrong, I do know she's deaf, and with out it she can't hear a thing. So it is an aid, just not like a hearing aid. the hearing aid will have an FM coupled with it. And if we need the equipment the school is responsible for getting it for us. But until it's needed, it's best to allow them to hear like any other hearing child, just with an implant. And her brain has worked out what's important and what's not, so we're home free! Now to work on getting that darn bi-lateral!!!
Kristen has been registered for Kindergarden!! WOW! My little CHERUB sure has come a long way! We also had mapping for her CI on Wednesday, so I was able to ask about how to go about and when to use the FM system with her. I do want it for her hearing aid side, but I'm not wanting to use it with her CI side. I was always under the impression that because it is a different was of listening, (different than hearing aid) that we need to allow her to hear as natural as possible. I did try the FM system and had found that it just confused her. Really, when she wears her CI, it's like she's hearing like you and I. Her brain has worked out the important information and knows what to listen for, well with voices anyways. I can be in a gym, and she can hear me call for her from half way across! So I wanted to see if she would be fine without the FM in school first, before we try it out. Well her audiologist stated that they have done more research on CI's with FM systems. Unless Kristen can tell me if there is interference then no. It also takes away alot of the background noise when it's on as well. They can't say how many decibles, but in a Kindergarden setting, she may miss out on peers conversations. They are also finding that the FM with the CI would be more useful in lecture type settings. Where it's all about information and direct note taking learning. I am pleased with these answers as this is how we use the implant anyways, like an aid, but like she's hearing when it is on. Don't get me wrong, I do know she's deaf, and with out it she can't hear a thing. So it is an aid, just not like a hearing aid. the hearing aid will have an FM coupled with it. And if we need the equipment the school is responsible for getting it for us. But until it's needed, it's best to allow them to hear like any other hearing child, just with an implant. And her brain has worked out what's important and what's not, so we're home free! Now to work on getting that darn bi-lateral!!!
Friday, November 26, 2010
It's strange
It's weird. I used to follow all of the CDH blogs and cry when babies earned their wings. I would click and find new families to follow and pray for. But since Kenny's been born, it seems like I feel like my time is just spent elsewhere. I don't like that though. I don't even find myself having time to check the blogs that I follow. I also am a part of so many different 'cliques' of families now. My world wide web of friends on FB seems to be from so many different walks of life now. We are a home with so many different acronyms that sometimes I don't even know what i mean anymore. I have nurses asking me what my education is!! Well it's grade 12. And the rest is self taught because of my kids.
I find it interesting. There is a family that I met at Mingle and Play at the hearing center this summer. Their daughter has hearing loss as well. So we are 'friends' on FB. I had met another family just before Christmas last year on FB. Their son has PVL. That is how I found out that Kenny was probably having infantile spasams...thanks to their video that they posted of their son. Then there is another family that I met on FB and their child has CDH and hearing loss. And because of all of these issues I have them as friends on FB. WELL they all live in Prince George and know eachother as well. I just feel like small world! And really, I am a part of too many communities!
I find it interesting. There is a family that I met at Mingle and Play at the hearing center this summer. Their daughter has hearing loss as well. So we are 'friends' on FB. I had met another family just before Christmas last year on FB. Their son has PVL. That is how I found out that Kenny was probably having infantile spasams...thanks to their video that they posted of their son. Then there is another family that I met on FB and their child has CDH and hearing loss. And because of all of these issues I have them as friends on FB. WELL they all live in Prince George and know eachother as well. I just feel like small world! And really, I am a part of too many communities!
Saturday, November 20, 2010
Poor ol' St. Nick
So I took the kids to get their annual Santa pic done...oh poor Santa. Oh well this is what it is...and we love it!!
The kids an update...since I'm so awful at updating lately. Busy busy busy!
Joe: He is finally recogizing his sight words. It's been a long time coming. Because of his ASD it's been hard for him to get the 'academics' side of things. But socially he does great. So we work at it a day at a time. And he is soooo proud of himself for knowing how to read now!
Kristen: Kristen was seen by the visual impairment clinic a week ago. Her vision is at 20/50. Not quite high enough for a visual impairment clasification. She has also been eating. And not just eating!! But eating everything. When you have fought with a kid with feeding issues to see them eat salad, peanut M&M's, cashew's, subway, pizza....well everything. It is so amazing. The kid can pack back a whole can of ravioli to herself. She's still quite little though, but catching up. She is also telling us when she has to poo! And that's amazing. We've gone 8 mths with the kid letting it go in her panties! Geeze! But we're there. I watch her now, and I don't even recognize my own child. I sometimes wonder when I'll forget who she was, and who she has become now. Is it normal for CDH to scar us like this? I hope that I can move forward and forget the what's and really enjoy the now's!
Courtney: She is loving pre-school! She tells me everytime when she goes what she had for snack. I ask everytime, "what did you do today?" And everytime I get the snack run down!!
Kenny: He saw visual impairment as well. His vision has gone from 20/2000 all the way to 20/360!! He said it's because partially the infanitile spasams are under control. We are still on the four month ween down process. The reason that we do not want to stay on the med's too long is that they can cause retinal damage. I was told that most seizure med's have a side effect that can cause vision problems. So as long as he does well we're clear for now. And hopefully they don't change to another type of seizure. We are also still seeing Bio-chemical Disease control. They are still investigating whether or not there is something metabolic/genitic going on with Kenny.
I'm hopeing to have the pediatrition send us all for genetic counselling. I think that there has got to be some reason that we have been so lucky to become a part of so many cliques in the world of 'special'. It doesn't change anything, but it may be nice for the kids to know for when they are older. What they do with the information can be up to them.
The kids an update...since I'm so awful at updating lately. Busy busy busy!
Joe: He is finally recogizing his sight words. It's been a long time coming. Because of his ASD it's been hard for him to get the 'academics' side of things. But socially he does great. So we work at it a day at a time. And he is soooo proud of himself for knowing how to read now!
Kristen: Kristen was seen by the visual impairment clinic a week ago. Her vision is at 20/50. Not quite high enough for a visual impairment clasification. She has also been eating. And not just eating!! But eating everything. When you have fought with a kid with feeding issues to see them eat salad, peanut M&M's, cashew's, subway, pizza....well everything. It is so amazing. The kid can pack back a whole can of ravioli to herself. She's still quite little though, but catching up. She is also telling us when she has to poo! And that's amazing. We've gone 8 mths with the kid letting it go in her panties! Geeze! But we're there. I watch her now, and I don't even recognize my own child. I sometimes wonder when I'll forget who she was, and who she has become now. Is it normal for CDH to scar us like this? I hope that I can move forward and forget the what's and really enjoy the now's!
Courtney: She is loving pre-school! She tells me everytime when she goes what she had for snack. I ask everytime, "what did you do today?" And everytime I get the snack run down!!
Kenny: He saw visual impairment as well. His vision has gone from 20/2000 all the way to 20/360!! He said it's because partially the infanitile spasams are under control. We are still on the four month ween down process. The reason that we do not want to stay on the med's too long is that they can cause retinal damage. I was told that most seizure med's have a side effect that can cause vision problems. So as long as he does well we're clear for now. And hopefully they don't change to another type of seizure. We are also still seeing Bio-chemical Disease control. They are still investigating whether or not there is something metabolic/genitic going on with Kenny.
I'm hopeing to have the pediatrition send us all for genetic counselling. I think that there has got to be some reason that we have been so lucky to become a part of so many cliques in the world of 'special'. It doesn't change anything, but it may be nice for the kids to know for when they are older. What they do with the information can be up to them.
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