Friday, December 10, 2010
The scary thing is it seems as though Jasz' variety is contained within his skeletal muscles but since he hasn't had a muscle biopsy and specific genetic testing that may not be entirely true. I believe from what I read and what Dr. Carter told me that if it did affect other systems he would be throwing protein from his kidney's. She tested him for that and he was not throwing protein from his kidney's. The GI tract is often affected with all three varieties. The research I read showed many times the initial symptom is heart failure (see list of related links on the right side of my blog), and they are beginning to think that some SIDS may be a result of CPT II.
Some states have begun to expand their newborn screening to include CPTI and CPTII testing. In those states they have found when a newborn tests positive and they then test the mother she will test positive as well. Hmmm....makes me think.
I have linked the research I found to my blog because it's just too much to type out and why when someone else already has.
Thursday, December 9, 2010
She told me that watching him made her happy. She just had to deliver bad news to a family earlier that day and to be able to see such drastic improvement in her patient was uplifting for her. Dr. Carter also noticed improvements I hadn't because I see him every day. Last time she saw him he was walking with his arms out from his sides for more balance but now he is able to walk and run with them down.
I had the opportunity to speak with another family in a similar situation. The difference is they went down the path we were supposed to. The results are drastically different. A bigger facility with state of the art equipment does not mean better results. In fact it means less empathy for concerned parents. My only reason for bringing it up here is that God continually shows His presence to me. He reminds me just how lucky we were and are.
On my drive to and from SB I am given an opportunity to pray and reflect in quiet as Jasz is very silent in the car most of the time. This is what I thought about. I have wanted to write a book since I was a little girl. In fact, when I go back and read my dreams and aspirations as an eighth grader, I thought I would write books someday. Well, I got to thinking..."when is someday?" I guess somewhere on my path I began doubting any ability I had in that regard. At this point in my life though, I think I may have something to offer. This blog has taught me that I have the ability to make people laugh, cry and think.
My mom asked me today what is holding me back from beginning this project I have dreamed of accomplishing. I told her I didn't think people would want to read a book by me. My dad said, "So what?"
You know what he's right. Sometimes our goals won't make us publicly accomplished. Yet reaching our goal fills us with a sense of pride. Watching my son teaches me this. He's not winning awards when he walks up a stair but he clearly feels so proud of himself....like he just did the best thing ever. To tell you the truth, in my heart it is the best thing ever, but it's not an act you think about taking on the road. He doesn't stop trying though, he does it for himself. So maybe I'll take a page out of Jasz' lesson book and do something for myself and not worry about "success" in someone else's eyes.
Friday, November 26, 2010
A few days ago Alina came home from school saying she was going to marry a boy named Erik. Well Erik isn't in her classroom which means he is at least in 3'rd grade. I have ever since then been trying to get complete information from my daughter regarding how this transpired. I mean is there really a 3'rd grader interested in a kindergartner or did Alina just pick him out of a hat and decide he was going to marry her.
Then yesterday we spent the day making it about the kids. One moment we were just sitting around the table and I asked Izabella what she was going to be when she grows up. She says, "a Mom, but I'm only having once child...it gets too noisy if you have more than that." Well there is truth to that statement. Alina pipes up with "I am going to have a lot of kids and animals on my farm. I'll have 20 million baby and grown-up cows, 30 million, baby and grown-up sheep, and 20 million baby and grown up dogs." Izabella did not like the idea of that many dogs as they would jump on her so she told Alina she would not visit her farm. Alina with her very sweet, sing-song voice, that just wreaks of "there will be consequences if you do not do as I say",says, "Yes you will."
Fast forward to earlier today where Alina elaborates that she will have 100 children. Maybe by then Medical science will be advanced enough to do that...but why? (I guess maybe she realizes she would need that many children to help on her overcrowded farm) I tried to explain that it's not a good idea but there was no reasoning with Alina she is determined to have 100 children.
Tonight at dinner Alina brought up Erik again. I tried to get out of her how this marriage thing occurred. I said, "Did you ask Erik to marry you?" she told me that Bridget wanted to marry him but she told Bridget she was going to marry him...ahh the battles begin already. So thinking I would deter this questionable union I asked her, "Alina, does Erik know you want 100 children?" She says in a sweet, innocent voice, "well, since I didn't tell him probably not." John and I chuckled at that. Then ALina said the best thing ever, "Well, I'm not going to tell him yet, but after I have 100 kids...then he'll know." My typing it out does not do justice to Alina's tone of voice. I just about had mashed potatoes coming out of my nose.
Later towards the end of dinner I overhear a conversation between John and the girls. Some how the topic of age came up and John said he was older than his kids. Bella pipes up with, "You're upposed to" And Alina copied her sister. so John says, "I am not opposed to it, I should be older than my kids." Alina says, "No your uppose to." So John says "Alina I'm not opposed to it why do you keep saying I am." She says, "I didn't say opposed to I said upposed to" Mind you both sounded exactly the same but to Alina there was a clear difference. A little bit of Pa channeling through.
I hope you laugh as hard as we did.
Wednesday, November 24, 2010
You can enter for your chance to win too!!
Good luck everyone
Tuesday, November 23, 2010
The beginning of November they actually did the evaluation. Trina, our early Childhood specialist who has worked the most with Jasz, did not feel he would still qualify. She felt like he was doing so well that they would probably do the 6 month phase down.
Over the last three weeks I was asked many times what my remaining concerns were. I kept saying that I didn't have any. I mean lets look at where we came from. 5 months ago we were told by 2 Dr.'s that Jasz had the muscle tone of a 2-month old and that his reflexes were almost non-existent. We were told it would be a long time before he could walk. So, my goals were meek. My goal for Jasz had been that by his second birthday he would walk using a push toy. Well he blew that goal out of the water. He surpassed EVERYBODY'S expectations for him. So why would I feel there was more to work on? Sherry, the OT, last week said to me, "we are heading into the weekend and we meet with your service coordinator on Tuesday. It might be good if you spent time this weekend thinking about what goals you want to work on over the next 6 months. Because even if they say he should be phased out we still need something to work on."
I took that advice to heart. Our first meeting where I was to state my goals I hadn't actually thought about it all...I was just happy he would receive services. So when seeing what I said written down....I felt a little sophomoric. So this past weekend I spent the time really observing my son and trying to figure out what I wanted for him.
It had been mentioned to me by Trina that technically he was still below age level because he wasn't jumping and climbing stairs independently. So this weekend we asked him to jump and he bent his knees and bounced. I took them to the park and Jasz spent a good amount of time walking back and forth over a very small lip in the pavement, and he had to muster the courage to do so EVERY time. Alina tried to play kick the ball with him and he would look at the ball at his feet and then pick it up and throw it to her. I tried to show him how to kick a ball and he scraped his foot along the ground and moved the ball an inch. When I went to MOPS on Monday I realized that I still have him in the baby room because his peers can out play him in all things physical and he tries to join but is still scared to at times.
I also encountered three nights in a row where he did not eat dinner because he couldn't deal with the texture of the food I made. Now this may not be abnormal, but in context of the Dr. saying he had low muscle tone in his jaws at the start of this adventure....it may not be completely normal. He picks out the textures he doesn't like even if it's a tiny piece...he will spit that out. I don't want my sons diet to consist of overly processed foods.
Today Natalie, our service coordinator and the one who decides if Jasz is to get services or not, came late. While Sherrie and Trina came on time. This gave them time to talk to me alone. Trina told me that she had had an appointment earlier in the day where it did not go how she wanted...and it was also with Natalie.
So, she says, "if you want more time than don't be afraid to ask for it." She also threw in that Jasz is her favorite child to work with. She says she wasn't supposed to tell me that but she just can't help it...he makes her day fun!! So nice to hear. Sherry then piped up and told me that I was her favorite parent. She says, "I see a lot of parents so don't take the complement lightly....you are a good mom and it's really hard to be a good mom!!" Also nice to hear.
So in a way they helped mentally prepare me and let me know it was okay to have more services. They empowered me to ask for what I felt was right for my son.
We went through their whole assessment. On most things he is at level. On social/emotional and spoken language he is around 2.5 years. On gross motor and toileting he is about 6 months behind. After the report was done. Natalie says, "well we completed all our goals so do we have new goals or do you feel good?"
I told her, "Don't get me wrong, I am so happy with where John is today, but my goals were small in the beginning because I hadn't been given much hope. But I spent this weekend really watching my son. He can't do things his peers can. Therefore he can't interact with them on the same level, and it still puts him in a fearful position. I want him to be able to kick a ball to his friends and run on the soccer field. I want that for my son and he isn't there. I also feel like he still has issues with food and textures. I'd like to be able to fix my son a kid-friendly but healthy dinner and have him eat it. I'd also like him to be able to sit with me and read a book. He looks at books, he brings me books to read . But the minute I open the book to read it to him he closes it on me and walks away."
I think I shocked all of them by how well I was able to communicate my sons needs. So Natalie said we should write down some goals. She also mentioned that due to the nature of the program he would be reevaluated on his 2'nd birthday but it wouldn't effect his stay on the program and it wouldn't be a full evaluation. So, Trina and Sherrie were a little unsure of how to proceed. they asked if they were making 3 or 9 month goals..they had assumed he would only be getting 6 months. Natalie says, "no make them for a year."
I would never want to take services from a child who requires them more than my son. However, I want my son to be able to do what his friends can already do. Last week I felt like there must be children worse off than him so if they remove his services...it's okay. Then I remembered Trina telling me how many people continually cancel their appointments with her...not due to illness, they cancel every week. So I figure my son can benefit from the services others refuse to utilize.
So here is the gratefulness part. God has put the right people in our lives. He gave me two good coaches who gave me the strength to trust my own insights. He gave me Dr.'s who helped my son immeasurably with the least amount of invasive testing possible. He put me on a path I went down kicking and screaming, but has since been revealed to me as the right path. He gave us two therapists who love and adore my son and were nearly in tears today with joy at him being able to continue to improve.
"I will instruct you and teach you in the way you should go; I will guide you with My eye." Psalm 32:8
So Thank-you God for all the blessings you have rained down upon this family. May we continue to let you direct our path.
Sunday, November 14, 2010
All I want is for my family to be healthy. Yesterday I began the unattractive trait of feeling sorry for myself. I've gotten a lot of "you can celebrate another time". Which I understand...however as many of us adults have lives revolving around our children...finding the time when we can all get together is tough. Plus we are heading into the Holiday's. I think by the time we find time again it will be spring and even that is iffy.
Don't get me wrong I am thankful for the blessings that have been shown to me. I have a loving husband who will always take care of me. I have kids who love me and want to do their part too. My husband was able to have a four day weekend....we had no idea how much of a blessing that would be until Thursday. And I had the less severe form of Meningitis...that's a HUGE blessing!!
It's funny I have always been scared of meningitis. I studied a lot of Biology in college and we talked about this illness in many of my classes. I always thought...well hopefully I never get that that sounds horrible. I have also met people who got it as an adult and years later were still suffering back pain and severe headaches (obviously not constantly) as a little reminder of the disease.
So when the Doctor said I likely had Viral meningitis I said "CRAP!!" Literally. I was scared. As far as we have come our Medical science is still bested by microscopic viruses. They are the most dangerous life form on our planet. They are like the Borg. They don't want to play nicely with our cells, they want to make our cells like them literally changing their DNA. And resistance to some of these guys is in fact futile. Scary stuff!! That's worse than any terrorist. Yet we have no way to commit mass specicide (not sure if that's a word). Medical science tells you to go home and ride it out they've got nothing for you except pain pills.
For me personally I think my Birthday is a little cursed. My 28'th birthday was my only birthday where I was seriously depressed. It wasn't because I was getting older. It was because it was exactly 2 months to the day that my brother Mike suddenly passed away. He always sent me flowers of some sort on my birthday. And I woke up that morning and realized I would never hear from him again. My six month old Izabella is the only reason I ever got out of bed that day...she needed me.
Not a curse but my middle daughter was born 2 weeks before my thirtieth. I think that was an awesome Birthday gift!! But I was in no mood to celebrate me. So on Alina's 1'st Birthday I threw a 30'th +1 party. It was technically before my 31'st. It was a lot of fun. But on my actually birthday I had a mean virus attack my optic nerve of both eyes. I spent that Thanksgiving getting lumbar punctures and MRI's. My vision returned long enough for me to renew my drivers license.( I had gotten a 60 day window to see my Doctor.) But it returned when my girls got the stomach Flu in January. It only attacked the left eye that time....but left me with permanent damage. Another round of MRI's showed not MS which is what all Dr.'s had suspected I had. To this day I am a Medical mystery. He believes it to be a virus that attacked my optic nerve, perhaps related to the flu shot. So I am never to get the flu shot as in all cases the second reaction has resulted in death. To be safe my kids are not to get it either. However, research I did shows that 70% of all cases of recurrent optic neuritis result in the patient developing MS within 10 years. I sort of always feel it hanging over my head. I constantly watch for other symptoms.
So when on this last Thursday, 4 years later, I had a headache that seemed to stem from my eyes. I was scared it was rearing it's ugly head again. And although I said "CRAP" in the ER a minute later in my mind I thought "Phew" it's not MS.
I guess part of me is a little pessimistic. I try hard to fight that bit of Satan in me. I try to always see God's blessings. Right now I feel though my back is hurting that I dodged a bullet and I think that is why I have been emotional yesterday and today...Viral Meningitis = dodging bullet!!
Tuesday, November 9, 2010
What's funny is I think kids just don't know what to do when mom or dad are not feeling well. I spent a lot of Sunday in bed. John had to chase the kids out of our room a couple of times. On one occasion they listened to the letter of the law but not the spirit. They left our room as dad had asked. But then the three of them made camp literally outside my door. They even began talking under the door through the crack...just to see if I would respond. Part of me was frustrated, part of me was touched and part of me was also amused.
Well I made it through the PTSA meeting yesterday and then my body gave in once again. I feel horrible, but hopefully it's temporary...moms don't have time to be sick. But I literally feel non functional. If you ask my family they will likely agree that mommy is not doing her job!!
Well, here's to forced time-outs...may my body return to normal soon!!
Monday, November 1, 2010
So this year Alina chose our family costume theme. She wanted to have all of us be in the Bob the Builder theme. Originally she wanted to be Lofty and all the rest of us to be the vehicles as well. John and I said asked if she would be ok with us being Bob and Wendy. She was. then not knowing how we were going to make lofty let alone any of the other vehicles we asked her if Jasz could be scrufty. She agreed.
Then over the last few months Alina had been trying to get out of Bella who she was going to be. Bella kept changing her mind. She finally asked if she could be Daphne from Scooby Doo instead. I reminded her how when she wanted to be the Star Wars family we all went along...shouldn't she do the same for her sister? She looked a little shamed at that question.
A few days later she says as we a re driving just she and I, "you know mom there are other things in Bob the Builder besides vehicles. There are bushes...I could be a bush!!" "Yes you are correct," I responded. She continued, "I could be a board too!!" "This is all true, Izabella." After a moment of silence she says, "well then I want to be Pilchard the cat." I thought it was a great idea. We still hadf yet to figure out how to make Lofty. Although we had visions fo cardboard boxes strapped to Alina.
One day John was day dreaming and came up with an idea. We could have Alina be a little Bob riding in Lofty. And make our Radio Flyer into Lofty. I thought it was a great idea. So we went on the hunt. I took a Saturday and tried to find Cream sweat hooded sweat suit for Jasz to make a scrufty costume out of, and a periwinkle suit Bella's size to make a Pilchard. I never did find one for Jasz. So I took his old cold weather suit that is really fluffy. I twas too small so I cut the feet of and hemmed the legs. used brown felt to make spots, ears and a tail and boom scrufty. I was very proud as it was my first ever sewing machine project.
My second one was harder. It was very difficult to find a periwinkle sweat suit for Bella. I never found a hooded on, so I used one I found that had a kitty on the front. I turned it inside out so it would look fuzzy. I then bought a cheapy blue shirt and cut it into strips. I sewed these along the back and arms. I made a tail out of a trouser sock. And made cute paws out of another pair of socks. Then I made felt ears and attached them to a periwinkle headband I found. It turned out really cute and she loved it.
Lofty was good too although he got damaged in trying to transport him to Arroyo Grande. Unfortunately we have no good family pictures because there was a spot on the lens we didn't know about and it blocked our faces and distorted the light...arghh!!! We do have a couple of individual pics of the kids but not of Jasz.
He ended up being really grumpy. We didn't realize he was getting sick, plus he missed his nap. He spent the whole time crying either in my arms or laying on the ground. Later that night after dinner I took the girls Trick-or-treating while the 2 John's stayed home. Jasz went to bed early. Alina got soooo many compliments. People got a kick out of this little girl dressed up as a construction worker. The LOVED it!!! They also loved Izabella as a cat. No one really thought of Bob the Builder when they saw them without Lofty, but I think because they were home made costumes they won points.
It was a fun night. Above are some pictures that came out good.
Sunday, October 31, 2010
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 spot...at 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 them..so 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 Carnosine...it'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 things...so 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
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
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 night...it'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 kids....it'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!!!
Thursday, September 30, 2010
This has been such a joy to watch and he is so clearly proud of himself. This past weekend we decided to go on a new adventure and attend the Arroyo Grande Harvest Festival. It would have been great had it not been 105 degrees outside. We lasted about an hour than John and I were too hot. I think the girls were able to ignore the heat a little but Jasz started screaming bloody murder. Once we got to the car Jasz held his foot up to me and said, "hot hot, ow ow!!” So I took his shoes off and he gave a sigh of relief. I realized that my leather sandals heated up and were burning my feet from the top down, so his leather shoes must have been burning his feet too. Poor thing. We all went home and jumped in our unheated pool. It felt so good. Now it’s a seasonal pool and we put it up at the beginning of summer. This summer was not exactly warm so we kept debating on taking it down. John had to work the weekend we had planned on taking it down, so it was still up…thank goodness. It was quite a relief.
We continued through our weekend. On Sunday I took Izabella and Alina to Montecito for some much needed mother daughter time. We went to watch an artist showcase to try to find a good performer for their school. It was a nice bonding time. And I think should the price be right I found the one for our school.
Monday proved to be even hotter and after getting the girls from school I decided that Dance was out of the question for Bella. It was way too hot and the building is not air conditioned. We went home and got ready to go in the pool. AS we were getting dressed Jasz just stood up in the middle of the room. Now there is no stopping him. He can stand where ever. Yesterday we went to Target and he walked his way through the store for the first time. He drank through a straw for the first time too and ate pizza...all firsts!!
So Jasz has proven to me these last couple of weeks that there is no holding him back. He will exceed all my expectations. And as I see that I need to take the time to look at my other two children. We had parent/teacher conferences last week. There I learned that Izabella is doing really well (when she wants to that is). She reads above her level but has some issues with math…this we already knew. Alina however I worry that I made a horrible parenting decision. She has problems with her fine motor skills showing that she may not have been ready physically to go the school. She is definitely ready emotionally and she is EAGER to learn. So her teacher feels she will be able to improve just fine. I always worry that I might make a decision for my kids that will affect them negatively with long term consequences. I must have faith that their own desires and passions will take over and give them success. I will end with a quote from a book called 108 adages of wisdom by Master Sheng-Yen… "As long as we still have breath, we have boundless hope, and the breath we have is the greatest wealth."
Friday, September 17, 2010
So this brings me to my processing of yesterdays plethora of information. After telling the story a few times what had started off being excitement in my voice mutated into exhaustion. I think the person I was speaking with was frustrated a little because we all know the diagnosis could seriously have been worse. Someone sent me an e-mail (you know who you are) and gave me this analogy which is totally perfect!! Say you plan a trip...you've been planning for a year. And you plan to visit Ireland. You pack accordingly and plan what you're going to see and get your hotel. You get on the plane but when it lands, you aren't in Ireland you are in Italy...you read the ticket wrong. So although the sights are beautiful and it's just as exotic a vacation, you have to totally change your expectations for your trip.
This is what I feel right now. Yes I have an answer and that is wonderful. Yes it isn't something totally horrible and don't get me wrong I am totally thankful for that. But I do feel overwhelmed. Imagine for a minute your child (if you have one). Imagine they were born with ropes tying their legs together. They seem unbreakable at first. Over time the knots begin to loosen and your child can move with more ease...but darn there are things he/she just can't do because of those ropes. So you go to an expert and find out those ropes are not removable. They will get looser and your child will learn to adapt, but those ropes will ALWAYS be there. Now tell me how you feel a couple hours after that realization.
I don't want anyone reading this to think for one minute I am ungrateful for the blessings we have been given. I personally believe that it is the devil that causes mischief in our lives not God. I am thankful everyday that I have accepted Jesus as my Lord and Savior as I know only His way will see our family through our storm. "Commit your way to the Lord, Trust also in Him, and He shall bring it to pass." Psalm 37:5. I also know there are others that I know fighting for their lives, and some hoping their suffering will end in whatever form that takes. I pray for all these to.
But please try to understand a mother's heart. You never want to hear your child can't do something because we always think they are a clean slate and can be whatever they chose. So as I said in the beginning I just have to rearrange my thoughts on this. The view is still wonderful and the adventure is great but I need to rethink the path I had planned. Please be patient and understanding and I will hopefully come out of my cocoon a butterfly!!
So yesterday we began our day with an appointment with the Gastroenterologist (say that 10 times fast). I really liked him. He was down to earth and honest. He also did take the time to hear out my concerns. He first looked at Jasz' skin. He told me that it did not appear to be an allergy reaction. He believes it's something along the lines of an overactive gland causing the follicles to clog. That's not to say that the condition can't be aggravated by an allergy but an allergy isn't causing it. Jasz does not have a gluten intolerance....yeah for that!!! The milk allergy test was inconclusive. So he ordered a full panel allergy test...more blood work!!
The next thing he asked me about was Jasz bowel movements. Well, they have always been irregular. It has been counteracted a little by the carnitine supplement as it has the opposite effect. So he sent me to get a scan of Jasz' abdomen. He wanted to see what was going on with his colon and kidney's and bladder. Well, he had the scan on his computer before I walked back to his office and it showed that Jasz is impacted..as he said, "it's wall to wall in there!!" So he is putting him on a low level of laxative until further notice. He said that Carnatine is like Holy Water...you almost can't hurt anyone with it. But he would rather him be on a laxative than rely on adjusting Carnitine levels to counteract his issue. He said the colon issue is a symptom of the low muscle tone. The colon is a muscle and it also is weak...it can't push everything out.
He did have a concern given that he is a normal picky 19 month old and has problems chewing and he is impacted which often makes kids not eat well, that he may not be getting adequate nutrition. So he suggested I grind up a chewable vitamin and put it in his food. He also said it's probably good to have him off of milk, cheese and soy so he gave me a prescription replacement. He called it a power shake. He is only supposed to have it once a day, but is designed for kids with allergies and other intestinal issues. Phew that was a mouthful.
From there we headed over to see Dr. Carter..the neurologist. She was all smiles. The blood work came back and though all the individual tests came back "within normal range" she is looking at each piece as a clue to the bigger puzzle. She said you can't really look at them separately you have to look at it all together. So yes they were all withing normal range, but none were down the middle. Every single read out was either the highest end of normal or the lowest end of normal. She said that is not normal. So basically as I understand it what all these off kilter results mean is that Jasz has a problem in the cellular reproduction cycle...specifically of his muscle cells. The way that all the levels were off indicate that that cycle is getting interrupted. So boiled down yes he does have a carnatine deficiency but he also has some other things going on. He needs another supplement(I can't remember the name of it though). But since she agreed with the GE Dr. that he needs a vitamin, she prescribed that. She did a prescription because I guess Jasz is low on antioxidants so she wanted extra vitamin E and no iron. She also felt drops would be more manageable. She doesn't want to add too many new things at once so we will add the next supplement next time.
As for all the issues he could have this was the best possible answer. It is something that we can mostly overcome with specific supplements. I asked about the prognosis and was told it's very good. He will always have to be on supplements. He will always have to have good nutrition, which means we will likely have to work with a nutritionist throughout his growing up years as his bodies needs change. He will always have to maintain a good exercise regime. We can never allow him to get overweight. His muscles can't compensate for extra fat. He would very quickly become a person riding in a hoverround and that would compound the issue. She does not think he will "ever be an Olympic athlete"...well we'll see what he says about that one.
So, all in all it means a family lifestyle change. I wouldn't say we are horrible, but I do think we can be better. John and I have been monitoring our own intake for a little over a month now and results can already be seen. So, it just means we ourselves have to fight our lazy bug so we can teach our son that exercise can be fun and it should be a part of everyday life. After all, God created this beautiful world...we should go out and enjoy it together. Maybe we'll all take up swimming...or something like that!!
Wednesday, September 15, 2010
To explain what I am talking about today I need to go back in time a little. A couple of weeks ago I realized that although Jasz can not walk to the play structures on the playground he can now climb and may be able to enjoy the small park by us. So I experimented one morning and took him there. He LOVED it!!! he climbed the steps and scooted to the slide and slid down...perfectly balanced. It was a thrill for him. I think starting towards the end of last week Jasz started being on the hunt for parks. Whenever he spotted a slide or swings he would squeal with excitement and point hoping I would bring him there. When I can I do, but time has been limited lately. On Sunday we set out to go to a friends sons birthday party. They live close enough to walk to. As we left our house we walked in the direction of the park (which is between us and their house). Oh my!! Jasz was yammering up a storm and pointing and giggling..and then we went through the park and out the other side. Oh was our poor boy upset!!!
Then this morning I took him and Hannah out for a walk and went through the park again. I fully intended to stop...but the equipment was soaked. So as soon as we got home I called the OT and the PT and asked if we could do this afternoon's session at the park. They both thought it was a great idea. I would say so...he did AWESOME!!! not only did he work hard but he LOVED every minute of it!!! It really brings home the point that I need to see things through his eyes!!
Wednesday, September 8, 2010
Thursday, September 2, 2010
On Monday I had the pleasure of taking both Hannah and Jasz to the Children's Discovery Museum. We stayed in the under three zone. Jasz is almost exactly 10 months older than his cousin Hannah. In the 0-3 section they have it set up like tidal zones. With tunnels and sea creatures. really cute and it's carpeted nicely and no shoes are allowed. Hannah and Jasz were so cute together. For about the first 30 minutes Hannah sat and watched Jasz....huge smile on her face. And Jasz explored everything. There is a structure in the middle of the area made of foam and covered in a vinyl type "fabric". It is in a pyramid but the top is a step down that they can sit in and play with soft blocks. Each side of the pyramid has a different landscape. So one is a straight slope, one is a wavy slope, one is small steps and one is larger steps. Jasz began focusing on that and standing up on it, climbing the different facings etc... After a little while Hannah joined him there and she too began trying to climb. She isn't quite as sure on her feet so though she picked up her feet wanting to climb she couldn't quite bring herself to try the steps up.
Soon Jasz wanted to try the tunnels and we began a game of "hide-and-seek" baby style. Jasz was laughing so hard that Hannah couldn't help but want to join in. So there were the three of us crawling through the tunnels chasing each other and babies laughing. It was so cute and fun!!!
When Janine came to get Hannah I told her that Jasz and Hannah were not too far apart gross motor wise. Of course she reassured that he was making progress every day. But as I thought about it I realized that it's definitely ok. As I will be taking care of Hannah 5 days a week, it's nice that they can sort of play on the same level. Think about it. Normally a nineteen month old would be running. That means sort of running over the 9 month old. So not that I am happy my son is delayed, but it does make it fun to watch the two of them together.
Yesterday I went to a Dr.'s appointment for me. I haven't been feeling myself lately...so I thought better safe than sorry. i was told that all of the symptoms I was describing are symptoms of breast feeding. He said most women get some symptoms but I had quite a few. He suggested I should consider weaning Jasz so as to regain my mental health. I told him I would wait for that decision until I could speak with his Dr.'s about it. Of course a week or 2 ago I though Jasz was trying to wean himself. He would barely nurse at all and not really latch on that long. But this week he seems to have a resurgence of interest. I know if I have to chose between my comfort and my son's best interest he wins every time. So we shall see. Hopefully soon we will get some feedback on the latest test results and until then I am trying to not think about it...I don't want to drive myself crazy after all...it's not a long trip!!
Monday, August 30, 2010
Well, Dr. Carter had told me to put the bag on the night before we were going to take him in, put the sample in the bottle they would give us and put it in the fridge. I decided to “collect” the sample during the naptime figuring he is active enough that a whole night was just asking for trouble. Well so was a naptime as the bag didn’t stick right and ALL of the sample went into the diaper and the bag was unusable.
So, on the day of the test I take him in. I immediately ask for a new bag. They called us back and they placed it on him…hoping they would have more success. Then they made me wait and wait. Finally they came and told me that they didn’t know what one of the tests were that she had requested. So they had a call in to Dr. Carter’s office and they recommended that I go home and they would call me. Ok so no go…argghhh!!
Well, meanwhile the bag is still attached. Eventually he peed, but a lot of the sample went into the diaper. But I brought in what I had immediately. They told me it was only enough for one of the tests she wanted. I figured that’s ok we’re half way there. They gave me a new bag and said they still had not talked with the Dr. So we went home.
Later that day they called me. They said that one of the tests he had to be fasting four hours prior to taking it. So we worked out a time when there would be 2 phlebotomists there and it would 4 hours since Jasz had eaten. She also told me that she had to throw away the hard earned sample as it had to be collected fresh and flash frozen on site. Since she hadn’t paid attention to that the sample was no longer useful.
Tuesday we go in at the appointed time and it instantly becomes clear that neither staff member is comfortable working with a baby. We put a pee bag on him and brought him in the back. I held my poor screaming child on my lap while the one tech tried her hand and torturing my child. Our poor boy held so still, as though he had already learned how to have his blood drawn (too young for that lesson in my book). She stuck the needle in and then grinded around in there for a few minutes and got nothing. They bandaged the arm up and the second tech tried the other arm. She pretty much did the same thing. They bandaged that arm. Both looked at me and said “what do you want to do now?...we don’t want to try again.” Well they shouldn’t have “tried” in the first place. They knew he was a baby and they scheduled it with me….they should have told me then they didn’t work with children instead of experimenting with my son!!! They then suggested I go to their other office as the tech who drew his blood the first time was working there that day. Then they looked at the clock and realized they would be closed by the time I got there. So they suggested I come back on Thursday at the same time and try again. They removed his pee bag and gave me a new one.
After thinking about it for an hour I realized, “hey I wasn’t happy with the first lady either. It took her three tries to get a vein!” So I called Dr. Carter and told her I needed a place that dealt with children. I found out that meant a trip to SB. I did my homework and found out the right person to go to and that meant I had to go in the afternoon. It also meant it would have to be delayed because I couldn’t fit it in my schedule this week.
Meanwhile, he is off of his supplement and it is making small issues. One he was becoming fatigued quicker. Also, now it could have been a coincidence, but he from Thursday night on was having night waking and inconsolable crying, which he had not had in months. Prior to the Carnitine he was having inconsolable crying bouts about every 4-6 weeks. We hadn’t had one since May. It suddenly started again. Now someone pointed out it could have been growing pains. And who really knows he wouldn’t tell me what was bothering him so really it’s anyone’s guess. But I can’t help but think it is at least a little related.
After a lovely weekend visiting with friends I took Jasz down to SB. Before getting in the car I strapped on the pee bag. When I got into the hospital lab, I immediately checked the bag. We had the biggest sample yet, but a lot had ended up in the diaper. They told me it was not enough and they put another one on him. This phlebotomist was GREAT!! Her name is April and she works in the Cottage Hospital Lab…worth the trip if you’re dealing with little ones. She got his vein on the first try. Now his poor little vein petered out so she did end up having to use his other arm too. But again on the first try. He was such a brave boy and Jasz actually stopped crying half way into the draw. Like he’s an old hand at this now. But by the end we still had no pee. So, he and I went to the Cafeteria and had a mother son lunch together. I made sure he drank a whole cup of soy milk and we played and ate. Went back to the lab and no pee. April was about to send me home and then she says, “you know what why don’t you hold him, turn on the sink faucet and let him play in the water. The sound of it sometimes helps.” So we tried it. He was super happy to be playing in the water and after a few minutes we checked the bag. It was full enough and not one drop had spilled into the diaper. Yeah for camp tricks!!
Now we wait. It will be at least two weeks (so as of now about one week left) before we have results. Because of this I rescheduled our next round of Dr.’s appointments. But we are still progressing in therapy. We have noticed he really holds his right foot out at an angle. Trina’s impression is that he’s comfortable that was and he probably feels more stable. But he was doing that with both feet and now it’s only one…so it likely will self correct over time and as he gets stronger. He didn’t go backwards in terms of skills he learned using his muscles being off the carnitine, it did by the end of 2 weeks really affect his stamina and he is still trying to get that back. He is also back to scooting more than crawling where he had been readily crawling….he’s sometimes resistant to that. That could just be him asserting himself though. So, we are now in the waiting and you will know when I know more.
Sunday, August 29, 2010
As for our Saturday night event…Our goal for our gathering was to have as much of our wedding party in attendance as possible. We did fall short of that goal, but with good reasons so it didn’t bother us a bit. What amazed us though was who did come. We had friends come from Oregon and Colorado. A few had to drive a decent distance. And those who live closer but have super busy lives, yet took the time out to spend with us. It was a lovely evening, filled with good food and great company. A time for memory sharing as well as catching up on our current lives. And those who are no longer with us were remembered. This night that we planned to host ten years ago was such a blessing. It empowered me and reminded me that we have surrounded ourselves with some marvelous people who will go the distance. A huge thank-you goes out not just to those that attended our gathering but to all who touch our lives and in many ways help us on our journey. Of course the biggest Thank-you must go to God. Without the graces He has bestowed upon us, life would be quite difficult indeed!! Thank-you to all who have called upon God’s ear on our behalf I truly believe these prayers are being heard and I watch the miracle in our son everyday!!
Wednesday, August 11, 2010
I think I said before that Jasz loves shoes now. He gets that you need them to go outside. At this point he doesn't really care whose shoes they are. Sometimes they are Alina's, sometimes mine. But on this occassion they were John's. He slipped his foot right in that crock and opened the screen door and scooted on out.
Yesterday was a GREAT day!!! I took John to see the Neurologist, Dr. Carter, again. She was so excited to see how strong Jasz has become. I could see she truly was happy about it, which is what made me feel good about her being his Dr. in the first place. She genuinely cares about her patients and their success. She also told me that she knew as a parent I must have been relieved to see that blood test come back negative, but that she was breathing a sigh of relief too.
We talked about so much yesterday so let me try to get it all down. I first spoke to her about Sherri's (the occupational therapist) concerns. Now let me go back and say I've noticed a pattern in Jasz' therapy. It seems that Trina and I will be super excited about progress and then Sherri will come in and be negative about the progress. And this has greatly affected my positive thinking. So the first thing I brought up was the first thing Sherri brought up...food allergies. And Dr. Carter ws in full agreement that Jasz may very well have food allergies. She was not so quick to jump on the celiac band-wagon. She rather when to cow's milk. Which actually, when I think about it makes sense. We have a strong family history of milk allergies and though I was not diagnosed with a milk allergy it definitely runs in the family. When I started thinking about it I realized something too. Last week I was pretty consistent about giving Jasz a glass of milk every day. And last Friday I remember thinking about how horrible his skin looked. I couldn’t figure out why. It was so bumpy and dry and itchy. A coupe of spots even looked blistered. Well I guess because I wasn’t feeling well, but on Saturday I forgot to give it to him and that trend continued this week. So, yesterday when I got him dressed for the day, I remember thinking how great his skin looked and felt. It was stills lightly bumpy, but a HUGE reduction from the normal. So she is testing him for a milk allergy and in the mean time I am to replace cows milk with soy. She asked me what dairy products he eats. I told her milk and yogurt. That cheese he refuses to eat. He will even pick shredded cheese off of eggs. She told me that something about the cultures in yogurt make those with allergies often not react to the yogurt. But cheese would make him react. She said she has noticed that kids pay more attention to their bodies than adults and he may realize that eating cheese makes him not feel well. Which would make sense as he ate it for about a week and then has refused it ever since. She said we could try goats milk cheese.
When I asked Dr. Carter about Sherri’s opinion of a wheat allergy. She said it’s possible and since she was running tests anyways she would throw the celiac panel in there. But the most common allergy in children is milk. She is running a celiac panel as well as the milk allergy test. She has also referred us to Dr. Kelts, a pediatric Gastroenterologist. She feels that though the allergies aren’t the cause of Jasz’ muscle issue, they are an issue for him and Dr. Kelts would be best to help us with all related issues to that. He also has a nutritionist on staff so once we do figure out Jasz dietary restrictions and needs she will help us develop a proper diet for him.
My next question from Sherri was the possibility for a joint problem. Well here’s the thing. Trina and I noticed just from the fact that he is getting stronger, his legs are naturally turning in more. And Dr. Carter saw this too. She says to me, “you can’t nit pick on everything. A lot of these physical leg issues self correct with him walking.” She doesn’t subscribe to the idea that if he learns to walk with feet pointed out they will form muscles that way and have to be corrected. She says many babies have the bowed in ankle that we see in Jasz….it self corrects when they begin to walk. She is of the same mind set that John and I were on before Sherri came into the picture. Progress is progress!!! However, she also said it is not unreasonable to get a hip x-ray and see if there is an issue there, as it doesn’t take much to do so. She said we would hate going the the Pediatric Orthopedist. Dr. McGuire is the better one, which is who Sherri recommended. She said we would wait forever to get in to see him, wait an hour in his office only to be given a slip telling us to get his hips x-rayed. At which point I said, “I guess I was hoping you would order the x-rays and see if there was even any need to go down that path.” So she did and right after our appointment I took Jasz over to Cottage hospital and had his hips x-rayed.
I also asked about Cerebral Palsy as Jasz is clearly stronger on the left side. She said she saw no signs of it in him. That most people favor one side. And though he is young to have a hand dominance he has done other things early so why not that? At this point Dr. Carter took a deep breath and I could tell she was not annoyed with me but with Sherri. She says to me, “you know I never tell the OC’s how to do their job. They know how to help kids get moving better than I. But many of them overstep their boundaries. They think they have experience in areas in which they do not.” She went on to tell me a story and she thinks it might have been Sherri, but not positive. But basically the OC in question told this mom that her son definitely had this degenerative disease. Even went so far as to print out information just so the mom could panic. She says the mom saw her after starting with tri-counties. So, by the time the mom got in to Dr. carter she was freaked out. Dr. Carter said she took one look at this boy and knew the assessment was wrong. But she ran the test for this disease anyways because the mom was so upset. The test was like $1500.00 and unnecessary and the results came back as she expected…negative. So she is not a Sherri fan. She also feels like Sherri is being too negative and needs to see progress for what it is…progress. I fully agree!!!
Finally, I asked the big question. Since Jasz has been improving so well on the carnatine, is it possible he simply has a deficiency? The answer is a HUGE yes!!! She smiled so big when she told me this. This is the metabolic disorder she is leaning towards and is also having him tested for. What does it mean if this is the case? A high protein diet, which again the nutritionist will help us with, and a carnitine supplement for the rest of his life…there are worse things. So in order to run the test, he must be off the supplement for a little while. It will be interesting to see if he goes backwards at all while off of it. She wrote a new prescription so that when he starts it up again it will be double the dosage. An interesting side note. She asked me if Jasz’ language has grown recently. I told her yes. He is now saying Izabella, DeDe (Dexter), ball, fish, no, yes, Amen, peace and many more all just started in the last week. She told me that that is an unexpected side affect she is having with the Carnatine. She told me she has had patients with both mental retardation and gross motor issues. Specifically she has a three year old who was only saying one word. She prescribed Carnatine for some physical issues. Within 2 months this girl had 20 words. She is not sure the mechanism for why this is so, but she has seen it many times over. Wow, that fascinates me!!!
Dr. Carter mentioned that Jasz’ platelet count was really elevated on the last blood test. And because it’s not uncommon to get errors she is retesting for that. She said we need to know because if it is high, it means his blood is thicker and he has a higher risk for stroke. That being said she did not seem overly concerned, so I won’t be.
Finally, I asked her about weaning him from nursing. She told me that she would like me to keep nursing him as it will only help him and she thinks it’s great I am still doing so. She said she may be ok with it in a few months as she doesn’t want it to be too hard to wean him, but for now it could set him back to wean him.
Oh yeah, I mentioned to Dr. Carter that we got Dexter. She thought it was wonderful!!! She told me that pets are the best therapy for kids. I told her how Jasz is already crawling more because he wants to imitate Dexter. She thought it was GREAT!!! I say this because again Sherri was not thrilled we got a puppy. She was condescending about it. But Trina and Dr. Carter both have agreed with me that Dexter may yet be the best therapy for Jasz. Jade is great mind you, but she is bigger (about 3 times the size of Dexter) and it intimidates Jasz. Dexter is just about right and I know he will grow, but so will Jasz’ confidence with him. I can already tell, those two are going to get in a lot of trouble together!!!
Dr. Carter told me if I had brought him in the first time with the muscle tone he has now, she would not have really thought there was a problem. She almost can’t believe the difference!! GOD is AWESOME!!!! So many twists and turns in our path, but He pointed us in Dr. Carter’s direction. And she thinks outside the box a little, and is very Positive…the perfect Dr. for our family.
Hopefully the trend of night sleeping continues...I do not want another day like Saturday.
Tuesday, August 3, 2010
Our first night with him was rough as he definitely has the beagle howl. But then I realized he just needed companionship. I moved his crate so it is face to face with Jade's, the snoring wonder. He starts whining and she snores loud and he calms down...it is very cute. What a good big sister!!!
He is also motivation for Jasz. Jasz wants to be like Dexter. So he crawls and barks (which he sounds like a yippy puppy when he barks). Jasz calls Dexter Jade, but that is normal for him. I realized Monday that Jasz groups things together and gives that group of things a name. So, Jade means dog. although he started trying to say "dex" today. I also realized that "Bewa" must mean sister. He has never said Alina. A couple of times it has sounded like he was trying to and his mouth just can't quite get it. Well, Monday morning he was climbing on Alina, hugging and trying to tell her something. She wasn't fully paying attention to him so he started calling "Bewa. Bewa" until she responded. Once she answered him he stopped calling the name. I think Alina is hurt by it, so I tried to explain that it's his word for both of them because he just can't say her name yet.
This week Jasz is clearly sick of working. We all hit that point where we just are tired of working so hard and frustrated, and just don't want to do it. This week Jasz has hit a wall. On Monday when Trina came to work with him he tried to distract her at every turn. He also all but refused to stay in the play room where we normally work. We tried to figure out why. One theory is his "therapy" pj's. I finally sewed those pants far enough down that he was made uncomfortable in them. On Friday he wore them for about 10 minutes just fine, but then he tried to shift to get comfy in bed and realized he could splay his legs as much as he wanted. Oh the wailing. I endured for 30 minutes and then could no longer. He almost went to sleep immediately.
Saturday we went to Lake San Antonio. this was a fun, relaxing day in the sun and water and the whole family truly enjoyed it. Jasz particularly loved dumping "sand" down his back. I was still finding small rocks in his diaper the next morning.
Sunday is when we brought Dexter home, it was also the night when Jasz slept the whole night in his homemade therapy pants. He cried again but just as I was about to rescue him he fell asleep.
This brings us back to Monday and working with Trina. When he would stand up his feet were more out turned than they ever have been and when Trina tried to correct them he would say "ow, ow, ow." When we tried holding him in our lap straight legged he also said "ow" crawling he was ok with as it was fun to pretend to be Dexter. So Trina and I weren't sure if "ow" was actually meaning that hurts because he has for a while said ow as just a fun sound. So she told me to talk to Sherri about it.
So today. Today Sherri came over and the appointment was set up for what is normally a good time for Jasz. But today he fell asleep about an hour before the appointment, which is when he would normally eat a snack. So when she arrived, I woke him up. And he wanted NOTHING to do with what she wanted. She did start the appointment by apologizing for giving me so much to do last week. She said she didn't want me to stress about doing it all at once, this was going to be a long process. I had a list of questions for her the first of which was could the therapy pants be making him sore. She said yes absolutely. But when she looked at them she said they weren't going to do the job because the legs of the pants were too wide. So I need to get basically stretch pants and sew them together. I have the pants I just need to do it. Though she said they may be good for slowly introducing the therapy to him. But she suggested I put the correct ones on him during the day, so we don't interrupt his sleep too badly. And for only 15 minutes to start so he doesn't get too sore. But it needs to be done to straighten his legs out.
Second question was about swimming and if it would be god for him. She said it would not build the kind of muscle we want but if it lets me hold his leg straight while he kicks (so he doesn't quite realize that I'm doing it) than it would be a great therapy tool. The only problem now is that the weather in SM has been anything but hot. So a cold pool will not be a good idea. I want it to be fun and I don't want his energy being spent on keeping his body warm. The Paul Nelson aquatic center I have already discovered is not heated very much so unless the outside air temp is high enough it is not a good experience. What I really need is something slightly cooler than bathwater and big enough for me to get in too...any ideas?
Third question was about shoes. She suggested I revisit Robies (spelling?) and see if we can find his right size. The sandals she said would be ok if the length wasn't so off. But he clearly wants to wear shoes. So I guess we try Robies.
Last question: car seat safety. I got to thinking this last weekend that you know what Jasz' muscles are underdeveloped. There is an assumption in car seat guidelines that if a child is a year, 20 pounds and 26 inches long they are developmentally able to secure their neck against injury. But that assumption would be false in our sons case. She tested his neck muscles and said they were pretty good as there was no head lag when pulled to sitting, but she would err on the side of caution and she would face him backwards. So, that is another task ...turn the car seat around.
After lots of talking and Jasz eating a snack Sherri did try to work with Jasz. She tried to just have him sit on the ball. We even had Alina come and help try to encourage him to be ok with it. That way she was involved and he really does like to do the things his sisters do. Well nothing doing. Sherri put him on the ball and he freaked out. She thinks he has a little sensory issue, which she says is not uncommon. The fact that he got so whacked out by it tells her that he can't process that feeling. she also says he likely has a sensory input issue with his feet. So whenever I bath him I am to Vigorously rub the bottoms of his feet.
We ended early today as he was completely uncooperative. She kind of warned me that she and Trina would likely have to force the issue and be the bad guys. They don't want his family to be the bad guys, so they get to take on the role. She warned me that he would be unhappy and would probably fight. I told her that was fine I know it's to help him and I would much rather they be the bad guys!!
You know I was usually pretty good with homework. If I was told to do an assignment (except for a couple of years in my life) I would do it just fine. But never did my text book cry, or try to get away from me...at least not literally. This homework is tough, because it does not just depend on me. Yes there were a few things to buy and sew. But actually implementing the tools is much different. So I get frustrated and feel like I am not doing enough. Today I nearly cried on poor Sherri and she stopped and asked me how I was feeling about my son needing all this extra help. I took a deep breath and told her, "it was an adjustment. It was hard to come to grips with at first. but I've accepted. The part I have a hard time with is 'why didn't I catch it sooner?', and I know why, but part of me wonders if he would need as much help if I had connected the dots sooner." She says, "He is still young and in an age that makes it so likely he will have good results. Yes if we had caught it 6 months ago he would be further along now. but in the scheme of his life it likely won't make a difference." It was comforting to hear her say that. But even as I type this blog tears well up. I know every day is progress, but why does my son have to hurt to get better? Why can't he just understand I'm trying to help him run like all the other kids? This is by far the hardest homework assignment of my life. And I can't take an incomplete in this course. I must see it through. And never before in my life have I wanted an A so badly.
At least I feel God's hand guiding our family. You know I realized after our pastor laid his hands on Jasz and prayed over him, miracles began to happen. Some might say they would have happened anyways, but we have been led to the people helping us all along. And those people have helped make miracles happen. And I know in time I will see the miracle of my son walking on his own. And until that time I must keep in mind that it can't happen all at once. And this time truly is special. Jasz and I will have a special bond. And I have been given the gift of seeing how many people care about us. Seeing the responses on face book and the people following this blog have really made me realize we do have a lot of support. Thank you all!!!
Friday, July 30, 2010
It took me a day to accept that this was something I needed to do. So I pulled out my needle and thread. I thought I was being smart and turned his pants inside out so I could sew the seams together . What seemed like a great idea at the time created a mess when I tried to put the pants back right side out. It became obvious that poor Jasz would be wearing his jammie pants inside out...well there are certainly worse things in life. So last night was the first time I put them on him. Another what I thought was a mess. I didn't sew them down far enough. So, he could still frog leg his legs slightly. It ended up being a success though. When Trina came today and I told her about it, her face brightened. She says, "that actually may have been the smartest idea yet. You know we were worried about him getting too uncomfortable. what a great way to get around that, by easing him into it." She went on saying, "If I were you I would just stitch a little further each day until he's used to it." See what a smart mom I am?
We had more success this week than mess all in all. Yesterday Jasz brought me Alina's shoe and stuck his foot up as though saying, "Ok mom put it on." So I went to his room and pulled out a slightly too big pair of sandals. They fit him perfectly width wise but are too long. I put one on and then he stuck his other foot up saying "shoe". So I put the other one on. He grinned big and then proceeded to open the screen door and scoot out. So, he knows the rules, you need to have shoes on to go outside. He's forgetting my second rule however, you need to be on your feet not on your rump.
This morning I said, "Ok guys it's time for swim go put your shoes on." Jasz scooted over to the shoe box pulled out his sandals and brought them to me. So I put them on. He happily scooted to the door. Something I did notice, which I asked Trina about is while in the stroller with the shoes on he kept his legs straight. Almost as though the weight of them held his legs straight. He decided to show Trina his shoes while she was here and she said she did see what I was talking about and recommended I ask Sherri about it on Tuesday.
I have worked with Jasz this week on a knee stance with straight legs. Today that work paid off. Trina noticed that he was WAY more content in that position today than earlier in the week. Plus, he on his own crawled small amounts several times while she was here. He actually chose it over scooting. Now he can't do it for very long as his arms get tired, but what a great way to build those arms...YEAH JASZ!!!!
The girls got involved in his pt today too. They took the place of a ball which I need to go out and buy him. He loved using them as a tool and they loved being a part of it. I think the more everyone can be involved the better. I do not want the girls resenting Jasz for all the attention he gets. They know it's to help him, but they don't quite understand why he needs all this help. It's really clear with poor Alina. Whenever Trina or Sherri comes she tries to get right in their face like "I'm cute too, pay attention to me too." Any ideas on mediating that without her feeling rejected would be awesome.
Anyways all in all this has been one giant success for our family this week. We are off to the lake for a day tomorrow, and Monday it's back to busy schedule.