Tuesday, May 31, 2011

A broken heart and a new identity

I've heard several messages and speakers lately talking about self esteem and self worth, about the need for identity and knowing ones self and one place in life. The latest time was just this Sunday. A singer and pianist came to our church. At the age of 6 he was run over by a lawnmower and his left leg had to be amputated. His father was a basketball coach so he identified as a sports star but that identity no longer fit. He discovered the piano and went to college on a scholarship and had a successful career in Branson, Missouri as a member of a quartet. He travelled the country with the quartet until he had a car accident and it paralyzed his left arm. He thought that was the end of his identity as a performer. Amazingly though he can still play and sing and perform with an artificial leg and a only one arm! He was great!!!

So tonight while I was laying down with Asa I started thinking about my identity. Before Asa I was a perfectly functioning person. I volunteered at the school. I worked in my church. I could carry on a full conversation. I was thankful and grateful for the blessings in my life. I was aware of how blessed we were to have a healthy family. I could parent, teach, play, cook, eat, enjoy activities with friends. I was a normal person!

Then when Asa got here the water got mucky. It was a crazy, strange world. Nothing worked like it was supposed to. Cooking, playing, working were all different and hard. Nursing, changing diapers, baby play was all different. I lost my confidence. I lost my identity as a Moma. It was no longer easy or very fun!

As we learned more about Asa and issues were piling up not lessening, I began to realize that the identity I'd painted in my head was not going to be. There would be one less on the ball team, one less in the school play, one less in VBS. Our family identity would be different and my identity would be different. And it was heart breaking! And I let God know all about it! It was a long conversation on my end, short on His! I finally just gave up the complaining and whining and gave my broken heart to God.

And God did what God does so well. He took my broken, lost heart and He healed it. Not only did He heal my heart but He made it better! He didn't just put the pieces back together giving me the same worn out, used up heart but he remolded and reshaped it to be more like He desires it to be anyway. He caused me to be able to see the positive and the good in my situation. He showed me blessings in the struggles we endure. He made my heart more like His heart.

Tonight I couldn't help but wonder what else He could do if I gave more of my broken self to Him so He can transform more of me. Why am I trying to find my own identity and not letting God show me what He can do? Why do I doubt my abilities and not just trust what God gives me? I am His perfect creation after all. He is the authority over me. He has proven His faithfulness to me time and time again. The only mold that I need to fit into is the one He has planned for me. Afterall I kinda like this identity!

Now if I can just remember all this tomorrow and the next day and the next day and the next day!

Sunday, May 29, 2011

Speed bump

This has been a tough week. Just when I think I've got it all figured out and things hit a good, even stride we hit a speed bump!

Most pausing was finding out early in the week that our mito friend Emma had died. She had been doing very well so the news was really shocking. Emma was 9. Such a doll. Please keep her mom and dad and 1 year old brother and sister in your prayers. As hard as this week is I can't help but think that the next few will be just as rough. Once the friends and family go home, once the daily routine gets going again. Once the medical equipment has to go back. Please pray for Karrie and Jason.

At the visitation on Friday I found out another mito friend, Jackson, wasn't feeling and was running a fever. By Saturday morning he was in the hospital fighting an infection. His fever has been down and he seems to be better so I'm praying this will be a quick visit!

These are both kids who moms I adore! Don't get me wrong, the kids are amazing but I admire their momas so much! These are ladies who I enjoy getting to meet for extended meals every few months. Ladies that I could talk to for hours. Ladies who I wonder how in the world they get it all done....then I remember it's because they have to and failure is not an option! I love these momas to pieces and pray for them daily. To see them hurting and struggling is not what I wanted!

And in very minor terms considering what my friends are going through, we found out that we need to completely change Asa's diet. I am by no means comparing a minor bump in my own road to the huge road blocks my dear friends are meeting but it is a bump for us still.

Asa is 99% Pedisure feed. He drinks 3 or 4 cups of Pedisure a day. He eats bites or nibbles a few times a day but I'm usually just trilled if he will put something in his mouth! I'm not worried about the calories or content because he has the Pedisure as his main nutrition. Pedisure is dairy based though and allergy testing (via blood test) done in Houston in March showed the Asa is allergic to dairy. Just to be sure though we saw an allergist locally who did the stick test on Friday. Well, he is still allergic to dairy. Along with peanuts, pecans, soy and cats! On and some grasses but that can be fixed with meds.

For the dairy we will remove the allergens for a week. After a week try the foods again. See if we notice a difference. So we began reading labels and trying new foods! Asa has been so happy to try new foods lately so I'm hoping this will be the push I need to really, REALLLLLY, try real food.

I'm not sure it is going so well! For breakfast this morning he had 1/2 a pancake and a cup of Rice Milk. For lunch he had less that 1/2 can potted meat and 1/2 a banana. He also had a applesauce pouch and a handful of Poptart bites. Add in 1/2 cup of apple juice and a cup of tea. That's it for today. How many calories do you think that is? He has already lost a tiny bit of weight since we've dropped from 4 cups of Pedisure to 3 about a month ago. I'm ok if he looses some weight but I don't want to create a problem!

An alternate option is to try an elemental formula like he was on before. I'm not sure he'll drink it orally though. He may, he seems to lack taste buds! Since he is trying to eat more and try new foods then I'm really hoping this will be the push we need get him eating real food! I've just got to get creative and I'm feeling very lazy and creative!

And I'll say again. These are all just minor, minor issues compared to what my friends are dealing with so please say a prayer for them all!

Tuesday, May 24, 2011

A sad day!

So much has happened in the last week that I need to catch up on but first I have some sad news. A sweet little mito friend died this morning. I met Karrie and Jason with Emma on our first trip to the Nashville mito meetings right after we got a diagnosis. Turns out they are from Memphis and Karrie has been a part of my mito moms breakfasts, lunches and dinners since!!! Karrie is one super moma and an amazing advocate! Emma was blessed to have these 2 parents! I can't tell you how special they are! And Emma is one sweet little girl. Such a fighter! She'd given us all a huge scare back in the fall but was doing well when passed away this morning. Just so sad! Join me in praying for peace and comfort for Karrie, Jason, their families and Emma's 1 year old brother and sister. I'm just having such a hard time finding words!

In other news:
Anna is a highschool freshman, Cade is a 5th grader, Gracie is a 3rd grader and Asa finished out his first year of school. Last week all the schools had awards days. Anna won perfect attendance (but skipped awards day for her fear of being recognized!), Cade won a Citizenship award and Gracie won an award for making A's and B's. Asa's class had a awards day but it was in the morning and he is an afternoon kid. It was also just to recognize the kids who were graduating into Kindergarten so Asa and I didn't go. When I picked him up from school that afternoon, I was surprised by an award for myself!!! Asa's teachers recognized me as a great parent! How nice is that!!!

Asa has his stick test with the allergy doctor on Friday. Can you even imagine how excited I am about this! I'm sure it'll be fine and you just do what you gotta do but it won't be pretty! Asa has gone a couple of weeks with no puking episodes and just this week started it up again! I'm sure having a dozen needles poked into your back will induce puking. The plus side is it should give us answers and force me to be strict about Asa's diet. I've been so wishy washy about the no diary, not really wanting to make changes until after the tests.

I'm sure there was much more news but I'm so distracted that I can't recall. Maybe tomorrow I'll just go through my pics and see if I can come up with more to post.

Tuesday, May 17, 2011

Sunday, May 15, 2011

Mito families are my heros!

I had a mito moms breakfast/brunch/lunch today. We did call it off before the supper hour this time! That's not always the case. I'm not sure how time flies by so fast! We are pretty convinced that given the right resources we could solve our mito problems and the world's problems too. We decided long ago that mito will be conquered not by the FDA, Washington DC or Merck and Pfizer. We'll defeat mito around the breakfast table at Cracker Barrel or the lunch meetings in the mall food court or on the support message boards and FaceBook and mostly in elevator rides with innocent medical students while riding up to the 10th floor! Yep, mito momas, daddys and grandmas will be the ones to stomp mito!

I have been pretty bugged by something during our meeting though. Each time I think of it I get all jittery and jumpy in my stomach. I should have done something, I should have done more than something. In the end though I'm not a confrontational person. Not generally anyway. I envy those momabears who can really stand up and fight. I also roll my eyes and shake my head at those crazy momas who roar at any and everything and can't be taken seriously. I think I have the type of personality that is all or nothing. If I start roaring it may turn into a roar about the weather or the day of the week or the way my water glass was one ice cube too short. So instead I mostly don't roar! I let people in line in front of me, I just replace my slightly dirty fork with a clean one from the next set, I pick at my steak that could be cooked a little bit more. Still, there are times for roaring! Today was one of them!

My friend Emily had to bring her son Jackson with her. You know if there was anyway possible she would have avoided loading a 46 pound kid, his 45 pound wheelchair, 2 or 3 inhalers, meds, feeding tube, formula and water! But sometimes it just can't be avoided and Jackson is a ladies man so it was a treat to have him with us. As she left the back wheel of the wheelchair got hung a little on the chair of a lady next to us. The nicely dressed church lady turned and looked crossly. As Emily tried to dislodge the wheel the look continued and the church lady made no move to help move her chair. Neither did her companion, the church man in his nice suit. Once the wheelchair was free, church lady huffed and straightened her chair. All of this took about 30-45 seconds but every time I think of it I feel my blood pressure go up. I asked shockingly if Emily saw this and she replied "all the time". Seems people also don't take the time to hold doors open even for wheelchairs.

I've chastised myself for not saying something. For not standing up for Emily and Jackson. In all likelihood Emily would not have wanted me to cause a scene. What would likely follow would be pity and no one wants pity. A better outcome would be thankfulness. An appropriate outcome would be for church lady and church man to be helpful instead of hindrances and then be thankful that they don't have to load, unload, load and unload a 46 pound kid and his 40 pound wheelchair and a backpack full of supplies just to have a couple of hours for breakfast and friendship. Thankful that they haven't spent the last 3 weeks fighting with a diaper company to send out the proper diapers for a 4 year old. Instead having to settle and buy Pullups whose main function is to catch a small amount of pee while letting the kids feel the "wetness" of the rest of the pee. In a wheelchair bound child this doesn't help with potty training but helps in soaking the clothes and wheelchair with pee. Yep, church lady should be thankful!

And that's what I should have told church lady and her church man. And all the other diners who stared instead of speaking and smiling to Jackson. Jackson loves the ladies and has a smile that'll knock your socks off! That's what church lady missed with her soured face and disgruntled huff. I pity her!!!

And while I'm on my soapbox.... Don't use the word "retard" or "retarded". Unless you look into the face of "retarded" everyday, don't use it. If you don't see it written in numerous clinical notes to describe someone you love, don't use it. Unless you are speaking medical talk or rebuilding a motor, leave "retard" in the closet.

And that concludes my public service announcement and soothes my soul for today!

Saturday, May 14, 2011

One more week!

We only have one more week of school here! Yay!!! I'm so excited that you'd think I was a kid.....or a teacher!!!

The last 2 weeks has been full of Field Days, Picnics, Water Days, Tug of War day, fun, fun, fun! Asa had a field day at school. Then other days he was at school I got to go play with Cade and Gracie at thier school. That never would have happened with Asa because it was so hot here last week. I so enjoy the 2 or 2 1/2 hours that Asa has had school. I will miss those few hours a day!

This final week of school Asa is having a picnic and water/sand day, Cade has a field trip to a minor league ball game and then Cade and Gracie have awards day on Thursday. I can't believe the year will be over. I'll have a 9th grader, 5th grader, 3rd grader and I have no idea what Asa's rank is!

I guess this has become the most boring blog of all time since there isn't much going on with us. Maybe we'll take an awesome, exotic, tropical vacation.....but don't hold your breath! :)

Friday, May 6, 2011

Some going ons....

First of all here's a couple of videos.

First of all I stayed at Asa's school yesterday for Field Day. They had all the pre-K's out in the morning but since Asa is in the afternoon class it was just his little class in the gym. That was probably best because they said it was pretty loud with the bouncy houses and tons of kids playing. Asa liked the bouncy house ok. It must feel pretty weird to be loosey goosey and the have the world under your feet moving too! But the video isn't about the bouncy house! After we got back to class he played on the computer. That has to be one of his favorite activities and a reason I think he'd love an iPad! I videoed him playing a new game using the touch screen or the button.

Next was taken earlier this week. After school Cade was filling up the Water Blasters and Asa was squirting them. He was soaked by the time he was done and it was cool but his laughter is priceless! I should have made one of Cade trying to be sneaky and shooting the dog because he knew I was videoing Asa. Boys!!

Now on to some medical news. While we were in Houston in March Asa had a ton of blood work done. We saw immunology for the first time ever. While Asa has been very healthy apparently one of his labs from our June 2010 appointment showed that he may have an issues so we were set up with Dr. Pacheco. She also ran allergy tests. While Asa has some soft signs of allergies (red eyes, rubbing eyes and nose, sneezing, eczema) it is nothing that interrupts life so I just assumed he has allergies to trees, grass, pets like the rest of us! His environmental allergies came back pretty normal. Imagine that!

But some food allergies popped up. Milk and pecans was in the High range. Soybeans was in the Moderate range and peanuts was in the Mild range. Asa's diet is 95% Pedisure that he drinks from a straw cup. Pedisure is a dairy based formula. It also contains soy. So it is a possibility that the Pedisure is making him sick. Could it also be contributing to his GI issues? I expected to see GI issues with a food allergy. Cade and Gracie both had bloody stool while nursing if I was on dairy. I simply eliminated diary and the problem went away. Once Asa started Pedisure we tested some stool samples and they were normal. He also had an endoscopy and biopsy right after starting it and both were mostly normal, no signs of allergies. And Asa was on an elemental formula for the first half of his life and he still had GI issues. So, what does all that mean?! It means that on May 27th we have an appointment with a local allergist for a skin test. Hopefully that will give us more info. We are also trying a diary/soy free diet. This is harder for a non-eater who relies on formula. There are several elemental formula options but they are pretty gross tasting. We could go back on the tube if he won't drink the formula. We haven't used the tube for feeding since October 2010. That's 6 months!!! We use it daily to drain and a few times for meds.

In my mind we'd see different issues if he was allergic to dairy. I picture the bloody stool Cade had or a swelling throat like you see in severe cases. But I'm sure an allergy could produce the gagging, puking, constipation the we are seeing and have been seeing for a long time. I guess the good thing about this is that Asa isn't a big eater so there are less foods to take away. He does like yogurt and that has to go. Also cheese slices. And peanut butter and banana but since the peanut came back we'll avoid that too. I can't say the he has ever had pecans before though!

As for the immunology stuff....it came back wonky too. We can do a booster vaccine and then redraw labs in 4 weeks but after giving this some serious thought and talking with Asa's ped here we've decided not to do this. Asa is so healthy. He is rarely sick and when he gets sick he bounces back pretty well. I'm afraid to go messing with something that isn't broken! We can always revisit this if things change. Dr. P herself said she doesn't just go by lab results alone but looks at the whole kid. So we will take her advice and wait.

So now you can see that just the trip to Houston and the mito specialist doesn't really end when we leave that wonderful city! I should brag on our local team here too! When we couldn't have Dr. Koenig's labs done in Houston, Asa's ped set it up for here. Then one test had to be done special at the hospital and he arranged all of that. I talked to his about the immuno work up too and he has the same thought as me so we will wait on the booster vaccine. I am also in contact with the GI at Vandy on the formula stuff. Our ped set up the skin tests here. It really is a group effort on all of Asa's care. So far everyone is great at working together and they all seem to really take my opinion and thoughts into account too. I can't tell you how important I think this is! I am the person who is with him day in and day out. I do kinda think that I know him pretty well!