Sunday, October 31, 2010

Tears of Joy!!

This time the tears of joy were not my own. Last Tuesday I had Dr. Appointments for Jasz. Let me tell you that EVERYTHING that could have gone wrong that morning did!! I was driving my parents Avalanche. I am not used to driving a huge truck especially not in Santa Barbara. Our appointment was at 10:30 with Dr. Kelts (the gastro-enterologist). Well I left before 9. My dad had asked me to check the oil level before going. SO I popped the hood...then could not figure out for the life of me how to OPEN said hood. After about 10 minutes of trying to open the hood and then trying to close the popped but unopened hood, I gave up. I drove the car to a GM dealership and meekly asked them if they could open the hood and check the hood. They took pity on me and did the task for me. ALl was fine.

Then I realized I needed gas . Well I don't know why (it's not like they were running a clearance special, but everyone was trying to get gas and it was going slowly. When I got to the pump I found out they were having technical difficulties with the pump. ARGHH!!! I was getting more upset by the minute.

I finally make it on to the freeway at 9:30...well last time it only took me an hour to get there...maybe I'll be lucky again. Well I would have been fine except I am driving a behemoth and I'm not used to it and it is SUPER windy!!! So I drove slower than normal figuring it would be better to be late than dead. I got to Dr. Kelts parking lot at around 10:50. 20 minutes late. but guess what? There was one spot in his parking lot but the big ole truck I was driving would not cram into the least not with this half blind woman driving!!! So, I had to leave his parking lot and go on the hunt for a spot for a truck in SANTA BARBARA!!! 20 minutes later I run into Dr. Kelts office in tears not even realizing I was 45 minutes late. They were awesome though. They looked at me and probably realized if they refused to see John I would lose it on they said they would see me. But I then realized I had an appointment with Dr. Carter (the neurologist) at 11:30. There was no way I could do it . So Dr. Kelts said, "no problem, come back at 1:15 I have time, I can see John then." PHEW!!!

So then I head over to Dr. Carter's office, meanwhile John is unhappy at all this maneuvering. I refused to even try her parking lot. But one thing did go right. I found a legal street spot right in front of her office ...yeah!!! I walk into her office exactly on time.

Dr. Carter had not seen John walking. Last time she saw him he was pulling up to stand on furniture and taking a few side steps. She got teary eyed when she saw him. She told me, "I never in my wildest dreams expected this boy to be walking like this within 4 months of when I first saw him. I have never had a child respond so dramatically to the carnatine. It is nothing short of a miracle that he is doing all that he is." I believe it is the team of people he has helping him along with some help from above. From all experts who have been working with John. They saw him from the beginning. Not one of them thought that he would be walking so well within four months. Not because they doubted his desire to walk, but they felt his muscles would fail him. His heart overpowered his inabilities. To have his neurologist basically say that he has defied all odds is amazing. He is an amazing little boy.

She increased his Carnatine again. She said she was going to give his body as much as it would take. Anything his body can't use will get peed out so no harm. She also added Carnasine. The thing is Carnasine is only sold over the counter in gel caps made for adults. The adult dosage is 4 pills a day. she wants him to have one pill every three days. What is ironic is I have had conversations about how difficult it is for me to remember to take my own medication/vitamins. And frankly since I have had to focus so much on his I forget to take mine most of the time. Hears the thing John is on Carnatine twice a day and a vitamin twice a day. He also was on a laxative, but we switched it to probiotics once a day. I can't give him that at the same time as his supplements as we want those to be absorbed. So, if we miss a meal it makes havoc for his medication schedule as it is. Now I have one that is every three days. I am going to set up a calendar with an alarms...I need to schedule it.

I need to also figure out a way for all these schedules to mesh with a different than normal schedule. A lot of times our weekends are completely abnormal. Also with travel. any advice would be great!! i was asked why we are giving him another supplement if what he is on is curing him. Dr. Carter first of all feels the supplements can really do no harm and Dr. Kelts backed that up. She also reiterated that Carnatine was not the only thing off in his blood work. He has an enzymatic disorder that luckily can be corrected with a couple of supplements. Actually Dr. Kelts has already talked about his digestive tract not working correctly. Reading the material on's not for his muscles but for his gut health.

I asked again if Jasz will REALLY need to be on these supplements all of his life or will it be something he can grow out of. She told me 2 things. That yes he has a disorder and we are replacing something that is missing from his body. She does not see his body being able to produce ti in the future.

But she also told me something else, "You know it is SOOOOO good we caught this as young as we did. I have had 3 and 5 year old's come in with similar problems. Once we correct the physical problem they still end up being behind because they are afraid. They are afraid to try new things and they are afraid of their peers because they always view them as stronger. The good thing about John is he is not afraid...he has no fear and it will not hold him back. He can do anything because his mind will not stop him." It was a beautiful thing to hear. He doesn't know that his body wasn't supposed to do certain it keeps him from nothing.

After that high we made our way to see Dr. Kelts and John had his lunch between appointments. The appointment with Dr. Kelts was brief. I told Dr. Kelts I taken him off of the laxatives. he asked if the probiotics were working and I told him I though they worked better. He said, "I don't care what you use if it's working. Between the probiotics and the supplements Dr. Carter is using he should be just fine." He was shocked at how well he was getting around as well. He also told me that he was super intelligent from all that he could see. Further more he feels no reason to keep seeing him unless something changes. I asked him how long he would likely need to be on the probiotics and he said likely until he is toilet trained. We'll see I guess.

All in all it was very good news on all fronts. I am a little flustered with the supplement schedule, hopefully I will figure it out. And feedback people have for that one is welcome.

Until next time...happy reading!!

Monday, October 25, 2010

They are always watching and listening

The title sounds like I am paranoid about aliens but I am not referring to some extraterrestrial nor am I referring to some secret spy network. I am referring to children. Even the most casual conversation is listened to absorbed and processed for some later (usually parentaly embarrassing)moment.

Well on the drive home today I got to listen to how children watching can be very telling as well. You see Izabella keeps telling me she wants to go back to Kindergarten. Like those are "the good old days." You know when you got stickers just for showing up. Now in second grade they actually expect you to do some work and she's not liking the idea. Now I know more is expected of Kindergartners but hearing it from Izabella's point of view you wouldn't think so. So today she again started on her wanting to go back to kindergarten shtick and it was because Alina had gotten a sticker. But after her dance class we are driving home and she pipes up with, "you know I forgot, my teacher once told me that if I stayed in school for a really long time and I went through every grade I could be anything I want to be. So you know what I am going to go on to third grade next year."

I guess my response was not emphatic enough for her because she went on," No it's true mom, if you finish school you can be anything you want even a MOM!!" Then she excitedly turned to Alina and said, "And you can be a farmer Alina!!" Who got really excited by this idea but tried to play it cool by saying, "yeah, I know" She went on to describe the kind of farm she will have, "I will have sheep and cows...." At which point Izabella interrupted to make sure Alina knew what she was getting into, "You know if you have cows you have to milk them EVERY day!! And you know what else? You have to kill your cows too for meat." Alina was silent almost horrified for a minute, but we have not hidden this fact to our kids. So she then says, "I will only kill the grown up cows not the baby ones ok?!" Izabella responds with, "Right because you would only get mini hamburgers if you killed the baby ones." You can probably tell we are not big veal fans.

So I interrupted them a little to let Alina know that there were all kinds of farmers and she didn't have to raise animals for meat. She could just have milk cows or just fruit trees. But the idea of no animals on a farm is like no teeth on a dog to my girls...impossible. So, Izabella comes up with the idea that Alina could have a HUGE dairy farm and DELIVER her milk all over the world.

Alina agreed that it was a good idea and then realized that running a farm that large was a lot of work. so she says, "so, I will need a husband to help out on the farm." And then this is the sage advice Izabella gave to her sister, "Well Alina if you are a stay-at-home mom you will have a lot of work at home. You will do all the work while your husband goes to work at a job. But you see you want him to have a job because you know what? He earns money at his job and you can use that money to buy things. You know for around the house, like sheets. If he doesn't work you will be poor and you won't be able to buy those things...and even clothes will be hard to get."

So Alina being no dummy tried to enlist her sisters help at this hard stay-at-home gig. So she says to Bella, "well then you'd have to help me right Bella?"
Bella responds with a very political noncommittal response of, "Well, I haven't decided where I will live when I am an adult."

I am so touched that to my daughter being a mom is something worthy of being educated for. In today's world it seems too often women are degraded for making the choice to be "just a mom" But to my daughter it is the highest calling. I guess I must be doing something right.

Sunday, October 17, 2010

A new way to spend quality time

Alina has been craving one on one time lately. It's almost as though she can't get enough. I know it makes a huge difference for her because almost all behavior issues disappear when I am able to give her special time.

The problem is when do I have that time? Between school, Jasz' appointments and Bella's activities Alina kind of gets left out in the cold sometimes. Don't get me wrong, we do things special for her, but I think being the middle child she kind of needs more of a boost right now.

Well this whole weekend has been about her needing mommy time. The problem is mommy has things she needs to get done, plus there are things they want done. And there is only one mommy. So let's see...Friday night we did star gazing out at the school. Sort of... You see we got clouded out. But the amateur astronomical club who had agreed to help us with a star gazing night was awesome...they had a backup plan. They did a whole educational thing on telescopes and how they work and the different types. they also just talked about what is in the night sky in general. And then the finale...they MADE a mini comet!! The kids loved it. and the club agreed to come out again on a clear night and give our kids a chance to see the sky through a REAL telescope. I felt very proud as I had been the organizer. I had been afraid of 3 things, that students would show up and we would have nothing to see, the club would fail to show or the club would show and the students wouldn't. Everything turned out perfect and it actually set the scene educationally for a real star gazing's almost like I planned it.

Saturday morning we actually did sleep in but then we ended up being rushed. You see being a huge fan of cooking contests, I enrolled both girls in cooking classes. Alina's is earlier and it's a parent and child class. Bella's is later and it's all her own. They both love it!! and i love how it has made them want to help in the kitchen. They want to create their own recipes (especially Bella). This time the theme was Fiesta. The girls are not fans of Mexican food so John and I had what they made for dinner. YUMMY!!!

Last weekend Bella literally left the class trying to add to the recipe she had learned and made dinner (with a little help ) the next night...I think I may have found her passion!!

Following the classes I went to the store with the girls. On the heels of that I picked up Jasz from home and took the kids to a 1-year olds birthday party. Daddy stayed behind to work on much needed honey-do's.

Sunday the kids had a a much needed play-date with their God Brother's!! So you see it's not that I don't do things for or with the's just finding an activity that Alina feels special in and knows she's got my full attention!!

Well that brings me to this evening. I needed to make lunches but Alina was clearly at a point where she absolutely needed time with me. It was like if I didn't do something with her she would burst and her heart would break. So, I asked a simple question, "Alina, mommy needs to make lunches for tomorrow would you like to help?" It was like the clouds parted and it was the best idea ever. She helped with everything. Some parts went slower, but some went faster. We spilled half a bag of the puffy popcorn they like...but oh well. the $1 lost was worth the smile on Alina's face. She made her own sandwich...which hopefully means she'll eat it. And you know what after wards she quite happily scampered off to play a game on her own.

Wow is it really that simple? I felt like I was getting a chore done. She did not feel like it was work at all!! she felt like she was helping and mommy was all hers!! What a blessing this revelation is...for both of us. Now i know I don't need to move mountains and sign up for something...I just need to invite her in to my activities. Which is something all to herself. Bella is not one who really wants to help...she says she does, but quits after a minute. Jasz is too little yet. So it is just Alina's time. Looking forward to this adventure!!!