Thursday, September 30, 2010

Leaving self doubts behind

A lot has happened since I last wrote. Chiefly Jasz has made improvements by leaps and bounds. About a week and a half ago he decided there was no fear and began using whatever he could get his hands on to stand up on. Then he would dare himself to let go and cross the room. It started with short trips but quickly became long journeys across the room and down the hall. He would self-correct to prevent falling.

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

planning the wrong trip

So I just posted the latest results and for the most part the news is good. And what is really AWESOME is that Jasz has taken a few independent steps. The PT decided last week to try it because Jasz really wants to go. He can do a few passes now. He gets really excited so sometimes his top half is moving faster than his legs or visa versa...but it is super cute. and he gets so proud of himself. It brings tears to this momma's eyes. Today he did some long stretches between the two of us so he had to walk about 5-10 independent steps. YEAH!!! Now he can't stand up in the middle of the floor yet, he has to pull up on something, but we'll get there. But after about 3-5 times of this he was TIRED. He couldn't even pull to could just see his legs weren't going to cooperate. He could crawl...but a break was needed from walking.

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'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 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!!

Just The Facts...

Today I am going to write 2 with as the title says just the facts of what we've learned. In another entry I will talk about my mental process.

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 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 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 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

Seeing things through a child's eyes

So today I had a stop and think moment. Typically Jasz' Pt and OT appointments have been in the afternoon. We've gotten a few in during the morning but it's mostly afternoon. This is not Jasz' ideal time. He's tired even though he's had a nap. The afternoon is usually full of hectic chaos whereas our mornings are much more laid like Izabella, Jasz is a morning person....don't know where that comes from because I certainly am not one.

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

Where does the time go?

Wow, life seems to be hurry up and wait. I just realized that 3 months have passed since we first learned something may be wrong with Jasz. A lot has happened in that time. But a phrase I heard once keeps going through my mind, "the days are long but the years are short." This was said in reference to being a stay-at-home mom. And yes sometimes the days seem to drag, but for me the reason they have dragged is I am anxiously awaiting answers. While waiting, we have done some fun things...but I don't want to miss today because I want to see tomorrow so bad. So my new commitment to myself and my family is to enjoy the moments. They may be small, they may not give an answer, but they are the things my kids will remember later. For certain, I do not want their memories filed with a distracted anxious mommy. Who needs that? So here goes trying to take the worry weights off and build some different muscles. Let's see how it goes!!

Thursday, September 2, 2010

Thoughtful Moments

This past weekend we had a guest over for Sunday dinner. Our Guest was Lisa, an Au Pair who stayed with our family for a couple of weeks back in February. She has now headed back to Germany and will be missed by all of us. I wanted the house to be at least a little clean so I did a few things before she came. One of those was to vacuum. Both Izabella and Alina wanted a turn vacuuming. The girls both enjoy helping. It used to be that when they vacuumed the actual suction portion of the vacuum was off the ground...therefore not really doing anything. I watched and marveled at how well Bella was doing now. My mind flashed back to a video I took of Izabella vacuuming the apartment we rented for short while when between houses. I pictured it clearly in my mind and realized that she was 18 months when that video was taken. I got a little sad when I realized that. Jasz is now almost 19 months and there is no way he could push and pull that vacuum. I say only a little sad because I know he will get will just take time and he is making progress every day.

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 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's not a long trip!!