Just a thought...or two!!!

Some days I wonder what it would be like if I did not have a child.

Some days I wonder what it would be like if I did not have a child with special needs.

Some days I feel like the train I am on is more like a merry-go-round going nowhere, slowly.

Some days I feel like the dysfunction is enough to drive me insane, literally.

Then there are the days when:

I hear a new noise coming out of Quentin when I thought there were no new noises.

I hear Quentin laugh and it's one of those belly busting giggles that make me laugh.

I feel like being a mom is the most important thing that I will ever do in my life.

I feel like being Quentin's mom is the most rewarding experience I will ever have in my life.

So today I sit back and smile at the good that has come into my life and craziness that I endure and hope that tomorrow will bring the same, but maybe with a little less crazy!

My little boy turns six today!

I have typed this over and over again and still find it hard to write the right words today. There is so much I want to say, but how? I truly cannot believe that my baby boy is turning six today. It seems like yesterday we were welcoming him into the world. I have so many emotions right now and I'm not sure that I want to share them all, so I'll keep it short and sweet.

On this day six years ago our lives were changed forever, and as I sit here and write I can no longer hold back the tears that flow easily and freely remembering the day so vividly. So for fear that I won't be able to put myself back together again if I continue, I'll say only this..."my cup runneth over".

Dear monkey,

I'll love you forever!

Love,

Mommy

Weight, weight, weight!

I feel as though this could be the topic of discussion everyday, but once again weight is on my mind. Quentin's weight, to be exact. We had an appointment with the nutritionist a week ago. One of those appointments that takes me an hour to prepare for, you know: waking Quentin, dressing him, feeding him, giving him medicine, getting him and his chair in the car, making sure that I don't look completely hideous, oh yeah and brushing our teeth, schlepping the two of us fifteen minutes across town, getting the chair off of the car and getting Quentin into it and finally arriving just on time for our appointment (or a few minutes late, but whose keeping track of that anyway). The appointment which we have every three to four months that consists of weighing Quentin and inevitably not being able to remember where the nutritionist wrote down the weight of Quentin's chair on the previous appointment, so of course we must go through the whole process again. The appointment in which we discuss how to add calories to Quentin's diet, the same ones that we discussed just three months ago, of course. The appointment that should last for ten minutes but takes at least a half an hour. The appointment that just feels like a waste of time, but makes them feel like we are being good parents by allowing them to check up on us and assure that we are following their recommendations.

So, I know you must be saying to yourself right now, "tell me how you really feel Alicia"! After all of this rambling on, I am just happy to report that Quentin is now almost a complete 37 lbs. We have increased his weight steadily and consistently and it feels amazing to know that even though, yes, we do use the supplements that they give us; No, we do not use them in every meal, every day because there are just too many things happening in any given day to remember and to do every single thing that we are "supposed" to be doing feels downright impossible. Every year I tell myself that I am going to create a daily calendar for Quentin so that I can make sure that I get everything done, but every year it gets pushed to the back burner and never gets done. As I sit here typing I am thinking of how I can set up the schedule and that I really should put that darn calendar together!!! But, right now at this moment in time I just feel so happy that he is on track (5th percentile..woo hoo) and that they aren't going to badger me again for another four months.

Just a side note. We had a play date a few Saturday's ago and it was so much fun. I met a new mommy Denise and her little boy Lucas who has beautiful blonde curly hair and blue eyes (he also has CP). Denise was amazing. As soon as we got to our host's home, she came over to Quentin and had him interacting with the other boys, she was stretching him and sitting with him. It felt so nice to be greeted in a way that was to all of us very "normal". Sometimes I feel myself worrying about where I'm going and how people are going to react to Quentin and his differences and on that day I really felt none of those typical apprehensions and it was really nice and relaxing. So I am happy to say that my new group of mommies is amazing and that I look forward to our next outing and sharing time with their kiddos (who are as wonderful as their moms are)!

Our new respite worker

So they say that summer isn't going to begin until June 21st, but I think that someone forgot to tell Arizona that. We have already begun to reach the wonderful triple digit weather here and I'm dreading the days when it's even hotter. I know that was off the subject, but I have to mention to all of my friends and family that live in beautiful CA (can't forget the lucky Hawaii residents either) that while you are living in bliss in your 85 degree beach weather, we are slowly melting away.

I know that I started this post with something more important to say. Now where was I? Oh yeah, we now have respite worker #2. Her name is Nicole and she is a 20-something pre-med student from Phoenix currently attending U of A. How lucky are we? She made her debut this past Saturday and so we stayed home for the first hour and a half to allow her to get comfortable, at least I told myself it was for her benefit, and then we went to dinner for a few hours and came back so that I could show her the bedtime routine. She couldn't get him to eat, poor thing, so she was holding him in his favorite position, head resting on the lady pillows, when we got home (he's such a man)! I think that she will definitely be ready to take on the full five hours next time since she got to see the whole routine, but we'll just have to see how I feel.

We have actually started to do many more things now that we have respite. Although most of it has to do with food, we are enjoying ourselves and it feels good to know that we have two very capable individuals helping us out. Now we are able to do something every Saturday night (5PM to 10PM) just the two of us and it's a nice change of pace to get out of our cramped space.

Our new friends have created a facebook page dedicated to Tucson families with children with cerebral palsy. I think that will probably open us up to meeting more families and for me more women to interact with. I still miss my girlfriends, but I enjoy making new friends. There is a playgroup date this Saturday and I'm excited that Quentin will be able to have some new friends.

There is a lot of things happening this summer, so I'll be in touch! Love you all.

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!