So, today we saw the orthopedist today and he said that he thought that everything looked good with the kiddo. That was nice to hear for once. He isn't worried about the slight scoliosis that Quentin has, he thinks that we won't have to worry about that until he hits puberty. Also, the fact that he has knock-knees is okay since he isn't walking. He doesn't think that the turn in on his right leg is anything to be concerned about because he is still able to open his legs up without any strain. What does that mean, you say? Well, the doctor is hopeful that he will not have any issues with hip dysplagia (dislocation)...at least in children that are capable of opening their legs in the butterfly position, he has never seen that particular problem. Woo Hoo!
At the appointment they weighed in him in and I was certain that they were going to tell me that he has gained three pounds (he seems heavier every day), but not even an ounce of change. Boo! It seems like we are doing everything and still nothing? My child eats really well, he's not sickly, in fact in spite of his disability, he's actually a pretty healthy kid...but I can't seem to get him to gain the weight that they want and it's driving me crazy. I'm so tired of talking about the "G tube, aka feeding tube". I guess that just means more calorie boosting and trying to find the right combo of food for this guy. I'm really tired of the nutrition appointments and the so-called "feeding clinic" which seems to me like another nutrition appointment. It's really more than I can stand at times, but I go so that they don't think that I'm a bad mom and I listen and then I try and implement what I can when I can so that he stays on track. It's an uphill battle!
I will make sure that I get back in here after Quentin's Neurology appointment at the end of November so that I can keep you all in the loop regarding the seizures. He is still having them and they seem to be a little more intense, so I hope that they can do something soon. Even if it's not physically harming him, I can't stand to see him go through it, it seems so cruel. The nurse was talking about putting him on a medication that we would give him during the seizure to help it subside quicker...let's see!
Until next time; Love to you all!
Wednesday, October 27, 2010
Friday, September 24, 2010
The new news
So, I have to say that once again I've been slacking on the posting, but so much is going on that I don't feel like I ever have time for anything other than work, Quentin and work or Quentin!
I am so excited to report that Quentin got his new wheelchair and it's wonderful. There are three minor issues with it, but most are easily remedied with a visit to Target or "The W Store" as we say in my family (for anyone that doesn't know, my dad is a union man to the core and Walmart is the enemy)! The chair doesn't have any shade or cover to keep Quentin protected against the elements here in Tucson, but they told me that I could get a clip on umbrella that has a flexible hose to help keep him covered up (not a bad idea). Second, no storage underneath the chair. That was great on his old chair because instead of having to grab one of those hand baskets I could just stick the few items that I needed under the chair and run around the store easily. The biggest and saddest thing is that it doesn't have a cup holder!!! "WHAT?" you say. I know, no cup holder. How do they expect mom's to push their children around without having a cup holder to keep their coffee, energy drink, or diet soda. A real absurdity, if you ask me, but then...no one really asked me, did they? Anywho, we are very happy to have the new chair (which I forgot to mention, folds up all pretty like and neat, but weighs a million pounds) and thankful that the State of Arizona picked up the huge bill that came along with it!
I hate to post this, but this is a post about Quentin and I want you all to be able to follow EVERYTHING that is happening with him. We have seen a an increase in the amount and length of seizures. The neurologist had switched his medication to the generic brand some time ago and then the pharmacy switched manufacturers, so we had hoped that it was only an issue with the medication, but unfortunately it doesn't seem to have made a difference even with switching back to the name brand. I am working on getting him into see the neurologist sooner than he is scheduled, but it is a little bit different than our private insurance and it takes just a bit longer sometimes. I have to say that the seizures, although I hate to see him going through them, don't really seem to be having any effect on him physically, which is great. He has had seizures at school though and because they last longer than the time that the school district has set as a guideline they have almost had the ambulance called to school. So, we absolutely need to get in to see the neurologist and get a new plan in action! I don't know exactly what will happen, but I know that sometimes it gets to a point where the medication doesn't work or they just can't give him anymore because of his weight and so we might find that they aren't able to control the seizures with medication any longer or for the time being and we'll have to look into alternatives at that point.
A little bit about Quentin at school. The teacher and her aides take the kids to a theraputic swimming pool once a month and I told them "Quentin doesn't really care for water". So, they took him a week ago and the reports were that he did wonderfully, he really enjoyed himself and that he relaxed just great! So, I guess the point of that story was to let you all know that I have no idea what I'm talking about...EVER! I was happy to hear that he enjoyed himself and I plan on going with them on their next trip so that I can see him in action!
One last thing before I go, my bff Kellie told me about this webiste called Meetup.com, because she just recently moved to the state of WA and is looking to make new friends, and she thought that I should give it a try. Well, I went on actually hoping to find a group that is focused on mom's of children with special needs. I did find such a group, but of course, like most anything it was basically mom's of children with Autism, ADD or ADHD. I wrote the creator of the group and she sent me an interesting email. Here is how she began, "Our group is mainly composed of kids on the autistic spectrum. There are some moms with kids of different disabilities such as blindness and sadly major trauma to the brain." and maybe I'm just being sensitive, but it's weird that she used the word "sadly" when speaking of children with major brain trauma and not of any of the other children. I guess what I mean to ask is, isn't it sad that any of our children have disabilities? Maybe someone that doesn't have a child with special needs or even people that have special needs children might not think anything of that statement, but it's me so of course I have to read into it and analyze the crap out of it. Needless to say, I won't be joining the group. Not because of what I thought of her email, but because it's not a good fit for us. It's a bit of a lonely feeling when even the special needs support groups don't really have much of an understanding or don't have parents with kids that have CP. Where do these parents go? Do none of them need support? Maybe they are just to busy with their children that they don't have time to "hang out" with other people. But on a positive note, I found a group of 20's and 30's that like wine and cheese, so I might have to do a meet up with their group very, very soon!!!
Until the next time folks...all our love! :)
I am so excited to report that Quentin got his new wheelchair and it's wonderful. There are three minor issues with it, but most are easily remedied with a visit to Target or "The W Store" as we say in my family (for anyone that doesn't know, my dad is a union man to the core and Walmart is the enemy)! The chair doesn't have any shade or cover to keep Quentin protected against the elements here in Tucson, but they told me that I could get a clip on umbrella that has a flexible hose to help keep him covered up (not a bad idea). Second, no storage underneath the chair. That was great on his old chair because instead of having to grab one of those hand baskets I could just stick the few items that I needed under the chair and run around the store easily. The biggest and saddest thing is that it doesn't have a cup holder!!! "WHAT?" you say. I know, no cup holder. How do they expect mom's to push their children around without having a cup holder to keep their coffee, energy drink, or diet soda. A real absurdity, if you ask me, but then...no one really asked me, did they? Anywho, we are very happy to have the new chair (which I forgot to mention, folds up all pretty like and neat, but weighs a million pounds) and thankful that the State of Arizona picked up the huge bill that came along with it!
I hate to post this, but this is a post about Quentin and I want you all to be able to follow EVERYTHING that is happening with him. We have seen a an increase in the amount and length of seizures. The neurologist had switched his medication to the generic brand some time ago and then the pharmacy switched manufacturers, so we had hoped that it was only an issue with the medication, but unfortunately it doesn't seem to have made a difference even with switching back to the name brand. I am working on getting him into see the neurologist sooner than he is scheduled, but it is a little bit different than our private insurance and it takes just a bit longer sometimes. I have to say that the seizures, although I hate to see him going through them, don't really seem to be having any effect on him physically, which is great. He has had seizures at school though and because they last longer than the time that the school district has set as a guideline they have almost had the ambulance called to school. So, we absolutely need to get in to see the neurologist and get a new plan in action! I don't know exactly what will happen, but I know that sometimes it gets to a point where the medication doesn't work or they just can't give him anymore because of his weight and so we might find that they aren't able to control the seizures with medication any longer or for the time being and we'll have to look into alternatives at that point.
A little bit about Quentin at school. The teacher and her aides take the kids to a theraputic swimming pool once a month and I told them "Quentin doesn't really care for water". So, they took him a week ago and the reports were that he did wonderfully, he really enjoyed himself and that he relaxed just great! So, I guess the point of that story was to let you all know that I have no idea what I'm talking about...EVER! I was happy to hear that he enjoyed himself and I plan on going with them on their next trip so that I can see him in action!
One last thing before I go, my bff Kellie told me about this webiste called Meetup.com, because she just recently moved to the state of WA and is looking to make new friends, and she thought that I should give it a try. Well, I went on actually hoping to find a group that is focused on mom's of children with special needs. I did find such a group, but of course, like most anything it was basically mom's of children with Autism, ADD or ADHD. I wrote the creator of the group and she sent me an interesting email. Here is how she began, "Our group is mainly composed of kids on the autistic spectrum. There are some moms with kids of different disabilities such as blindness and sadly major trauma to the brain." and maybe I'm just being sensitive, but it's weird that she used the word "sadly" when speaking of children with major brain trauma and not of any of the other children. I guess what I mean to ask is, isn't it sad that any of our children have disabilities? Maybe someone that doesn't have a child with special needs or even people that have special needs children might not think anything of that statement, but it's me so of course I have to read into it and analyze the crap out of it. Needless to say, I won't be joining the group. Not because of what I thought of her email, but because it's not a good fit for us. It's a bit of a lonely feeling when even the special needs support groups don't really have much of an understanding or don't have parents with kids that have CP. Where do these parents go? Do none of them need support? Maybe they are just to busy with their children that they don't have time to "hang out" with other people. But on a positive note, I found a group of 20's and 30's that like wine and cheese, so I might have to do a meet up with their group very, very soon!!!
Until the next time folks...all our love! :)
Tuesday, June 22, 2010
Where did the time go?
I can't believe that we are going to be celebrating Quentin's 5th birthday in less than one month. The time has gone so quickly and when I look at him I still see the tiny little guy that I brought home from the hospital. He's growing by the minute it seems (longer, not wider). It's really true that time goes by quicker once you have children.
I took Quentin a few days ago to get fitted for a new wheelchair because he has officially outgrown the "stroller" like chair that they gave him almost three years ago now. It is supposed to be more "user friendly" than the last. So, that means that Grandma Linda and Auntie Carol will now be able to take Quentin places when they babysit because they will be able to work the chair and store it away easier!
We are being provided diapers through the State of Arizona which I have to say is pretty great. They aren't the best diapers we have ever used, but free beats buying them anyday! His nutritionist is still trying to get him to drink some sort of canned product that they can provide to us to help alleviate the cost of buying milk and carnation instant breakfast every week or two, but I'm a skeptic. I don't really like any of the canned goods that they have, but they do pack more calories than what he is getting now, so I think that I have it where he will drink it if half of the drink is the canned stuff and half is the real deal. They bug us every time we go in about making sure that he stays on track with his weight gain.
He must be going through a growth spurt because he is sleeping all day long and although I want him to wake up and enjoy the day, it's nice to have a minute in which I can actually get some work done in the morning. He's been having seizures too, so I think that is part of the reason that he is sleeping so much. He usually has them in the mornings when he wakes up. I have looked up the type of seizures that his neurologist in San Diego said that he thought Quentin was having and it seems as though it's really, really hard to treat them. We obviously don't want to give him too much medication, but it's hard to see him go through that too. It's something that we will have to deal with forever, but hopefully we can find a way to deal with them more effectively.
We had a nice visit with my mom when she came to visit this past weekend. We didn't get out to do much because it was 106 degrees out here, but it was nice just to be able to talk and hang out. I am looking forward to our trip to Long Beach next month to celebrate Quentin's birthday and to be able to hang out with family and friends. Kari and Kristense (cousins from my mom's side) are going to spend some time with us tomorrow here in Tucson and I'm excited that we get to see them. We are going to try and take them to Tombstone so that they can see something interesting and historical...and so that Quentin and I can explore something new in Tucson too!
Until the next time...
I took Quentin a few days ago to get fitted for a new wheelchair because he has officially outgrown the "stroller" like chair that they gave him almost three years ago now. It is supposed to be more "user friendly" than the last. So, that means that Grandma Linda and Auntie Carol will now be able to take Quentin places when they babysit because they will be able to work the chair and store it away easier!
We are being provided diapers through the State of Arizona which I have to say is pretty great. They aren't the best diapers we have ever used, but free beats buying them anyday! His nutritionist is still trying to get him to drink some sort of canned product that they can provide to us to help alleviate the cost of buying milk and carnation instant breakfast every week or two, but I'm a skeptic. I don't really like any of the canned goods that they have, but they do pack more calories than what he is getting now, so I think that I have it where he will drink it if half of the drink is the canned stuff and half is the real deal. They bug us every time we go in about making sure that he stays on track with his weight gain.
He must be going through a growth spurt because he is sleeping all day long and although I want him to wake up and enjoy the day, it's nice to have a minute in which I can actually get some work done in the morning. He's been having seizures too, so I think that is part of the reason that he is sleeping so much. He usually has them in the mornings when he wakes up. I have looked up the type of seizures that his neurologist in San Diego said that he thought Quentin was having and it seems as though it's really, really hard to treat them. We obviously don't want to give him too much medication, but it's hard to see him go through that too. It's something that we will have to deal with forever, but hopefully we can find a way to deal with them more effectively.
We had a nice visit with my mom when she came to visit this past weekend. We didn't get out to do much because it was 106 degrees out here, but it was nice just to be able to talk and hang out. I am looking forward to our trip to Long Beach next month to celebrate Quentin's birthday and to be able to hang out with family and friends. Kari and Kristense (cousins from my mom's side) are going to spend some time with us tomorrow here in Tucson and I'm excited that we get to see them. We are going to try and take them to Tombstone so that they can see something interesting and historical...and so that Quentin and I can explore something new in Tucson too!
Until the next time...
Monday, May 17, 2010
Kindergarten
Okay, so many of you may be wondering what is happening next year because Quentin will be five in only two months and that means no more pre-school. So, I had a meeting with his new school and because of the budget cuts he will most likely only be attending school for 2 1/2 hours a day, five days a week. Don't get me wrong, I love my child...dearly, but 2 1/2 hours. That's not enough time for us to do anything! Once again, the economy is taking it's toll on our little family. But the good, or great, news is that he has an amazing teacher. She is really a very mild manor, sweet-as-pie, kind of lady that has been with the school for a number of years. I have heard nothing but terrific things about her, from outside sources as well as other teachers. The rest of the team seems to be pretty good too, which makes me happy.
This half day, as they call it, is really giving me an ulcer. Segis is starting a new venture and I'm supposed to be working...but it looks like I might be a stay-at-home mommy all over again, unless anyone wants to move to Tucson and be our permanent babysitter! What a mess. I don't know how people do it. I won't feel comfortable having Quentin at daycare, so we won't be able to go that route. For all of you mom's and dad's out there where both parent's worked, you are trully amazing. It's
Monday, April 19, 2010
Progress
So I could go into a whole long story about what a journey this has been for us (feeding, that is). We have been to a very low, low with Quentin in which we were basically giving him his food (milk, formula) through syringes, orally. But, with a lot of perserverence from our son and ourselves we have finally arrived at a point that seems to be working in everyone's favor.
Long story short, Quentin LOVES food! He loves to eat and we are able to explore so many different foods with him now. Our nutrionist was concerned with his weight, but since we have been working with her Quentin has gained a little over 2 lbs. in one month. This is a huge success for Quentin and for us. We enjoy watching him try new foods and are very surprised many times to find that he likes things that we didn't think he would. He is chewing very well, so we are able to try many more foods that were once things that would have been impossible (try getting bread into a syringe and back out)!
The other great news that I wanted to share is that today at feeding clinic, Quentin drank from a cup and actually used his lips to seal the rim of the cup (he has done it before but never really sealed the cup with his lip like today). For some of you, it may seem like a simple task but for Quentin this is really difficult and he did it like a pro today. I was so proud of him and it makes me cry just sitting here thinking about it. These little insignificant things that many children do with ease are very big accomplishments for our little guy and it reminds me that there are so many things that I have to be thankful for in life. We take all the small steps and cherish them.
It was a great day today for our family and when times are tough I'll remember days like this!
Long story short, Quentin LOVES food! He loves to eat and we are able to explore so many different foods with him now. Our nutrionist was concerned with his weight, but since we have been working with her Quentin has gained a little over 2 lbs. in one month. This is a huge success for Quentin and for us. We enjoy watching him try new foods and are very surprised many times to find that he likes things that we didn't think he would. He is chewing very well, so we are able to try many more foods that were once things that would have been impossible (try getting bread into a syringe and back out)!
The other great news that I wanted to share is that today at feeding clinic, Quentin drank from a cup and actually used his lips to seal the rim of the cup (he has done it before but never really sealed the cup with his lip like today). For some of you, it may seem like a simple task but for Quentin this is really difficult and he did it like a pro today. I was so proud of him and it makes me cry just sitting here thinking about it. These little insignificant things that many children do with ease are very big accomplishments for our little guy and it reminds me that there are so many things that I have to be thankful for in life. We take all the small steps and cherish them.
It was a great day today for our family and when times are tough I'll remember days like this!
Wednesday, April 14, 2010
Yeah...our first post!
I'm sure that you all can tell that the site is not complete yet, but I thought that I'd go ahead and get started anyway! It is very exciting to have a place to share our ever so eventful lives with all of our family and friends, especially for those that we don't get to see often enough. As most of you already now, we are back in Tucson, AZ again working at the apartment complex that my in-laws own. It is a big job and it keeps us on our toes. Tucson is a growing city in Arizona, but it is very, very different than living in California. There are lots of things to do outdoors and I'm sure we will eventually get around to trying them, but it's going to take a bit of convincing to get Segis out there with me...he's more of an indoors kinda fella (and the 110 degree summer heat doesn't help much)!
Anywho, let's talk about everyone's favorite guy...Quentin! He is currently enrolled in the pre-school program in the A+ rated Flowing Wells School District. His teachers are very nice, but we really do miss his old school and teachers. He has a great Speech Therapist at the school, she's very sweet and very good with all of the kiddos. They do yoga first thing when the kids get to school and they also do aromatherapy foot massages (yes, I'm extremely jealous)!!!
Quentin has his insurance through the state of Arizona, and so far we haven't had a problem with getting anything we need, so we will continue to cross our fingers that things stay that way with the budget cuts and all. We have a hard time getting him to see specialists quickly here, but luckily we really don't need him to be seen but for the regular routine checkups. He will be going to the Opthamologist this month and then we will FINALLY get to see the Neurologist at the end of next month. We will also be going to wheelchair clinic soon and are excited to get a new chair, because his is just about falling apart and he has almost outgrown it anyway. He goes to feeding clinic, which we aren't really sold on just yet, and sees the nutritionist because they want him to gain weight (of course). He gained 1 lb in the last two weeks which is a huge success, and we are hoping that he continues on the same course so that they can stop pestering us about him having a feeding tube. It's actually very frustrating that they keep suggesting it seeing as he has been making such great progress and he loves food. They want us to use it for liquids (water mainly) and his meds, but it just seems so unnecessary. We are extremely proud of how far he has come...his palate has expanded big time and we want him to continue to learn to enjoy eating and drinking on his own.
This year marks a major milestone for us and that is Quentin's 5th birthday! We are so excited to celebrate his big day and although mommy is nervous, we can't wait for him to become a kindergartener. The schools are trying to decide on half day or full day for the little guys (again budget cuts rear their ugly heads), but at least he'll be in school for five days instead of the three day, three hour school days he has right now. This will give Segis a chance for some free time...it's a rough life being a stay-at-home-dad...I remember the job very well!!!
Anywho, let's talk about everyone's favorite guy...Quentin! He is currently enrolled in the pre-school program in the A+ rated Flowing Wells School District. His teachers are very nice, but we really do miss his old school and teachers. He has a great Speech Therapist at the school, she's very sweet and very good with all of the kiddos. They do yoga first thing when the kids get to school and they also do aromatherapy foot massages (yes, I'm extremely jealous)!!!
Quentin has his insurance through the state of Arizona, and so far we haven't had a problem with getting anything we need, so we will continue to cross our fingers that things stay that way with the budget cuts and all. We have a hard time getting him to see specialists quickly here, but luckily we really don't need him to be seen but for the regular routine checkups. He will be going to the Opthamologist this month and then we will FINALLY get to see the Neurologist at the end of next month. We will also be going to wheelchair clinic soon and are excited to get a new chair, because his is just about falling apart and he has almost outgrown it anyway. He goes to feeding clinic, which we aren't really sold on just yet, and sees the nutritionist because they want him to gain weight (of course). He gained 1 lb in the last two weeks which is a huge success, and we are hoping that he continues on the same course so that they can stop pestering us about him having a feeding tube. It's actually very frustrating that they keep suggesting it seeing as he has been making such great progress and he loves food. They want us to use it for liquids (water mainly) and his meds, but it just seems so unnecessary. We are extremely proud of how far he has come...his palate has expanded big time and we want him to continue to learn to enjoy eating and drinking on his own.
This year marks a major milestone for us and that is Quentin's 5th birthday! We are so excited to celebrate his big day and although mommy is nervous, we can't wait for him to become a kindergartener. The schools are trying to decide on half day or full day for the little guys (again budget cuts rear their ugly heads), but at least he'll be in school for five days instead of the three day, three hour school days he has right now. This will give Segis a chance for some free time...it's a rough life being a stay-at-home-dad...I remember the job very well!!!
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