Making New Friends

So, you asking yourself, two posts in one month, what the heck is going on? I know, I know. It is unusual, but I wanted to share something fun. I met someone. Actually, I met two someone's! Long story, short. Quentin's new respite worker helps another mommy that has a son with CP and she connected me with Patricia, who also connected me with Shauna and now I have two new mommy friends. Exciting? YES!

We talked about everything that you might be able to imagine and more. I learned so many things that I probably should have brought a pen and pad to the play date, because of course I have forgotten half of them already. They are full of so much knowledge and have tried so many treatments and therapies that it was a little overwhelming, but very exciting at the same time. Maybe, just maybe Quentin and I will be able to benefit from making friends. I get to spend time with women that understand my day-to-day a little bit and Quentin gets new friends and maybe we will be able to try something new that we hadn't even thought about before. Win, win!

I wasn't able to bring Quentin to the meeting today because he was at school, but their kids are great. Patricia has triplets (and two older children also) that are almost three. Zach has CP and gorgeous red hair and eyelashes (fire red to be exact)...so cute, and he smiled at me a lot, so I think I may have a new friend! Shauna has three children. I got to meet Lola the baby (16 months) and she's adorable and Christian her son who is almost 3 who has CP. He is such a big boy I couldn't believe that he wasn't even 3 yet! Shauna has a wonderful blog for Christian, christiansjourney.org, which I looked at as soon as I got home, of course. Each of our stories are different, but we relate which is sometimes what is needed. Shauna brought up a good point. She said something along the lines that it's nice to be around people that aren't always looking at you with pity or worry because they think that you are sad. I think that it's just nice to sit down with a group of people that talk to you and your kiddo and aren't seeing their disability first.

On a quick side note, Quentin had another IEP meeting again at school yesterday and it went really well. They are really happy with all of his progress and have changed some of the goals to be a bit more challenging for him now. He will be working on using his hands to activate switches instead of his head now. He tolerates being in the stander more and they would like to see him eventually be able to actually bear a little weight on his feet so that we can use that for transferring him in and out of his bed, or chair, later on. We have to incorporate a good stretching and massage routine at home to help keep from developing contractures (A condition of shortening and hardening of muscles, tendons, or other tissue, often leading to deformity and rigidity of joints*Merriam-Webster*) in his hands and wrists. Also, to keep him from having pain and arthritis in his joints later on. So, I'm going to learn their routine and see if there is anything that I'm missing and really work on being more consistent with it, because it's truly more beneficial for him that way. I am always glad to hear that he is doing well and improving on his goals and it makes me happy to see him grow. Quentin will be 6 in two and a half months and I say the same thing every year. Where did the time go?

Signing off now. See you during my next moment of silence!

Summer's a comin'

I just realized that I started this blog a year ago and have been the worst at keeping up with it, so I am going to commite myself to being better at getting the news about Q out to everyone on a monthly basis. I think once a month will do it seeing that not alot of things are changing for us, but who knows I might have something very profound to say on a monthly basis...so, be on the look out!

We are getting closer to the end of the school year and all I can feel is dread. Dread at the insanely hot weather that is coming (and keeps rearing it's ugly head at least once a week), and dread that we have no summer school/program options for Quentin. Not that I don't love my son, but now what? Segis is not running his video game shop out of a retail location anymore (sad, but good and a story for another time) so he will be home to help, but it's just a shame to me that Quentin will have to be home all day, every day. Did I mention that Segis isn't much of an outdoor person? Oh, and did I mention that it gets over 110 degrees here in the summer? So, needless to say even if Segis wanted to go to the park just to relax and hang out outside, our son cannot handle the heat. We went two weeks ago to the Tucson Street Fair and it was a disaster. I was so excited that we were going to be able to get out of the house as a family and go sample some of the wonderful street fair food and goodies and we lasted for 45 minutes. Not long enough to even walk the entire route of the fair. There were so many people there and Quentin's wheelchair doesn't have a source for shade anymore, although we made sure that he was well covered in clothing so that he didn't burn, it just wasn't good enough. It was at least 90 degrees outside and he was sweating profusely. He was done in the first 15 minutes, but we braved the elements for another 30 minutes while greedily eating our chips on a stick followed by the most decadent cheesecake (dipped in chocolate...I know, I know. One word. AMAZING!)also on a stick!!! What won't they think of next? I just wish that there was a program that suited my kiddo's needs so that he can see someone other than his parents for three months all day long. Maybe we'll have to get a week long trip to Grandma and Grandpa's places (that means one week with the Perry Grandparents and one week with the Jacquez Grandparents) so he can get a change of scenery. I might have to join him, because the scenery here isn't exactly what I would call inviting.

Oh, I don't want to forget that we have reached a milestone and I think that it is worth sharing, as it seems that most of what we discuss here is about Quentin's eating. He is officially 35+ pounds. I realize that we have to continue to have him gain weight, but I almost felt like baking a cake to celebrate. I mean, we have been hounded and hounded about putting Quentin on a feeding tube because they say he's too skinny, and finally our hard work and determination have paid off. He eats a lot of different foods at school that we might not try at home, but that's the great benefit of having him enrolled in school. He gets pizza (with ranch dressing, of course), burgers, and much, much more. I have yet to attempt to mush anything more than soft foods, but I love that he's getting to explore new foods and that it's helping him grow. His face is fuller and his belly too! I'm still working on the whole bottle/cup thing and I know that I'm going to have to abandon the bottle eventually, but it's about convenience and I don't know if I'm ready to let go just yet.

I just wanted to add something else about our lives that I thought was worth mentioning. We had a visit a few months back and Auntie Carol and my mom came to Tucson. It was the best time I've had in Tucson in a very long time and I am so happy that they came and spent time with all of us. We took a day trip to Tombstone and Bisbee. Tombstone was neat, but I think that one trip was enough for me. I fell in love with Bisbee, it made me feel like I was in California all over again. It is a small mining town with beautiful green trees (it snows there and was pretty cold when we took our trip) and lots of artsy shopping, small galleries and jewelry shops...adorable little town. The housing prices there also reminded me very much of California, a bit on the high side, but the houses were very unique and I loved that. We ate at our favorite breakfast place and just hung out which made me wish that they would never leave, but it was really nice to have the time with them that we did and we look forward to their next visit once the summer months have long gone.

I miss home very much and wish that I was near family and friends, but know that this is our journey and we will find our way home eventually. I hope that everyone is well and I miss you all!

Another day, another doctor

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!

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! :)

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...

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

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!