Summer's Harvest

Summer is almost over and eleven and eight are that much closer to being back into school. (I took the numbers verses names from another blogging mother that I know-love it!) I look forward to the stability of our days, which comes with the steady schedule that gets enforced once school begins. However, I will miss their voices, laughter and the company that they gave throughout my this summer break. I can honestly say that this is the first summer that they haven't drove me so crazy that I was actually glad school was starting again. I know that may sound bad but sometimes, no matter how fantastic they may be, kids can overwhelm you, especially when there is more than one of them! It seems to me that mine, for the most part, are in a pretty good stage but then again maybe I am too.

We had some slightly alarming news today. I received a call from Vada's Geneticist, it was an expected call, however, the news that came with the call was not. While I think everything will end up being fine, it did tug at my heart strings a bit and push me into some old memories-we've been here before.

 A few weeks ago, while in Peoria, Vada ended up having a lot of lab work drawn, some was at the request of the Geneticist.

This was uploaded that day from my cell, to my Facebook. 

The call today was to give the results from their tests. It turns out that all of her levels, and this is including her Vitamin B12, are normal-except her Methylmalonic Acid levels. I have wrote about MMA and in regards to Vada, here and quite possibly in other places that I just can't think of at the time. The concern is that she isn't just having spikes in her MMA levels but that she has a more serious problem called Methylmalonic Acidemia (MMA) also known as Methylmalonic Aciduria (note if left un-diagnosed or untreated it could cause death, great huh.).  Here and here give's some decent information that's fairly understandable, especially to those who don't have a medical back ground. Trust me when I say that even those with a great medical back ground have a difficult time deciphering this one.

Anyway, while MMA is a concern, it is not where our first thoughts goes. If you do go read about it then you'll see that Vitamin B12 deficiencies can play into MMA, however, her levels are fine. Mine however may not be. Every time I have my labs drawn, (even while I was pregnant), they always come back showing that I am either borderline anemic or just anemic. The thought here is that Vada was being breast fed almost exclusively by me, a mother lacking in her own vitamin supply. So were thinking/hoping/praying that this is all caused because Vada wasn't getting what she needed from me. There are case studies where solely breastfed babies of Vegan mothers have similar, but much more serious MMA occurrences. While I am not a vegetarian and nowhere close to being a Vegan I don't eat a whole lot of meat or animal by products which is partly the reason that I fall into the borderline anemic category. That and the fact that I rarely remember to take my daily multi-vitamins.

I should be getting another call with in the next day or so from the Genetic's office on the "game plan" but since Vada is no longer being breast fed and is eating every kind of food that we offer her were praying for some upcoming positive lab work to be done. While this MMA business may sound alarming, and it does have us a bit nervous, I feel like it truly was caused by my lack of nutrients. I feel like this is God's way of saying "See, Tara, it really was time." (You know, for me to stop nursing her.) I told Justin my thoughts tonight and he said that he had felt the same way, only he felt like God was telling him that this was time for him to step in and take over. (When I was recovering from my tonsillectomy and Justin was taking care of everything.) Either way, tests will be done and we will do what we need to do to keep our girl healthy. I truly feel whole heartily that this is going to be okay.

Putting today's call aside...,

These last few weeks have consumed me. So much has happened and it feels like even more has changed! While most of these things would not be overly interesting to anyone other than myself, it has been quite eventful none the less.

I have healed almost fully from my tonsillectomy and I am eating solid foods again-which I might add has been a delicious experience. However, I have not, out of fear, ate my Darito's-yet. I did end up loosing eight pounds throughout these last two weeks but since I had gained prior to the surgery you couldn't really tell. I say "couldn't" because I went six days where I only drank water and now that I can eat I am eating like a horse! (Neigh, baby, neigh!) I haven't got back onto the scale, mainly because I don't care enough to do so but I am pretty for sure that if I did, I would see that I have gained those lost eight back.  I am sure that all of the baking I have been doing had nothing to do with the that either!

These were the first homemade cinnamon rolls that I had ever  made... and my throat, at the time was too sore to be able to eat them! Jasmine liked them however and said that I should open a restaurant. I take that compliment for much however, because if I were to put sugar on spinach, I think that she would say the same thing.

Vader's likes to help whenever she can and since she follows me into the kitchen each time that I go, she gets her own utensils.

Eleven is currently doing College For Kids and has just finished her fourth or fifth year of softball. She is anxiously awaiting the beginning of Jr. High, which now starts in sixth grade versus seventh grade-her class year is the first for this change over.

Eight is having some testing done to evaluate for a possible ADD (Not to be confused with ADHA, this girl is as sweet as pie and not overly active! She is just having a very difficult time focusing, which goes back to the beginning of school for her). She has two more sessions before we really hear the doctors thoughts. She too is looking forward to seeing all of her friends at school although I think she may be experiencing some slight anxiety about returning to the classroom.

Justin is working-a lot. This week he is working T, W, Th, F, S and Sun. He works a two week rotation of days and then nights, all being twelve hour shifts. Luckily, this week he is on days, which means, we get to see him for a couple of hours during the nights.

The greatest thing about all of this business is that it practically has nothing to do with Miss V (and I can say that because again the MMA is only a small possibility.) . Besides her weekly visit with Kim, her PT, Vada is just hanging out and along for whatever ride(s) may be taking place on a particular day. I cant tell you how pleasing this is. We went from weekly (sometimes even bi-weekly) trips to Peoria (which was a minimum of three hours of driving each time), daily intramuscular injections of a nasty steroid, tri-weekly home visits from a nurse, seizures, heart murmurs and seclusion from life as we now know it to this...the activeness of what I now consider a "normal life". It's great. God IS Good! I am so grateful for good health. For this life. For this family. For my husband, children and for my friends. Life has its moments but at this time I don't pray for an explanation.

Tonight, for the first time we picked a real (mini) harvest from our little garden. It was so much fun, however, we have yet to get any tomatoes which is the key to what vegetables we did plant this year.

 We have a very little yard and in that little yard we have an even smaller patch that gets good sun. Therefore, we are not only limited on what we plant but also on how much. This year we planted tomatoes, yellow and red peppers, jalapeno peppers and red and yellow onions. Then on the deck we have a hanging pot that has herbs growing in it. Basically, we planted everything we need to make a good hearty salsa but you cant make  good salsa without tomatoes.

We may have had a good pick of vegetables tonight but I want those damn tomatoes!  Hopefully, what is growing will get the chance to ripen and not be eaten by some animal in the night. So far all of the tomatoes have had at least one bite taken from them. Justin thinks its chipmunks. Either way, I'll be sure to let you know when we do make our salsa because I am sure your on the edge of your seats with this one!

Speaking of gardening and visitors..., check out this guy that we found in our peppers! I have never seen in them in their cycle before, just the shells from afterwards. Kind of interesting.

A New Diagnosis & Two Added Medications

For the last three weeks Vada and I have been taking a trip back to Peoria once a week to see her Neurologist, Dr. Jennings. Today was our third trip. Basically, we are just doing check ups and going back through every test that has been preformed from the previous visit.

Today's visit was scheduled for 11 a.m. Last weeks visit was as well, but it only took about an hour to be seen. Dr. J. doesn't make appointments for Friday's, he just see's patients on an emergency basis. Vada's situation is a bit different because of her treatment and he wants to see her once a week. He also wants a visiting nurse to come three times a week and for us to take Vada to her pediatrician once a week as well.

Before I get into how the visit went I have to say that I think Dr. J. is a great doctor. Soft spoken and seems to have a kind heart. His bedside qualities, I am learning, are hard to find in doctors, let alone specialists. Most specialists, in my short experience, seem to have a chip on their shoulder, or really big heads! Dr. Jennings is down to earth. People(his staff), refer to him as a skinnier short bearded version of Santa Clause. Its a close comparison. In situations like Vada's its nice to have a doctor that is willing to answer any and all of your questions, and he does just that.

It was almost 1 p.m. before Dr. J. finally made it to our room. Everything went smoothly,at least for the first few minutes. The conversation was light. He asked a hand full of his normal questions. "How's she doing? How are you doing? Have you noticed any seizure activity? And so on. He even brought me in a bag of food because we had been there for so long! His own personal stash of trail mix and veggie chips. That's my kind of food! Up until this point I was happy with how the visit was going. I thought I was about to be on my way out, which made me things eve better.

On a side note Jasmine started Karate a month ago. Tonight was her first promotions ceremony. She was going from the beginners white belt to the red belt. I have missed the majority of her classes and I really wanted to be there to cheer her on.

Instead, I was helping hold Vada down while she was stuck five, yes, count them...five times to obtain enough blood for eight vials of blood (they threw in an extra vial, just to be sure they got what they needed).

  This has also become a ritual Friday afternoon activity. Did I mention they had to do it five times? What about the fact that they went through her scull? Its a sad thing to watch, but I refuse to walk out of the room. I always have to help hold Vada. Usually i'm by her head so I can at the very least whisper into her ears, in hopes that my voice may calm her somewhat.

Anyway, things were (note the emphasis on "were") going smoothly, until Dr. J. received a phone call and had to step out for a minute... or thirty-two, but who's counting.

As he entered I noticed he had extra papers in his had. He sat down next to me and said. "I'm glad that everything is going so well, but here's what I am concerned with today." He shuffled through the papers in his hands and pointed down to a bold printed title. Methylmalonic Acid Deficiency. He began discussing levels and acids and then he brought up a name of one of his colleagues,Dr. Hoganson, who was from Chicago. He said that Dr.M would like to see us, but for now he would like to start treating Vada immediately. For what, I was still unclear about.

Turns out Vada has a high levels of Methylmalonic Acid and those levels are increasing. Actually, they seem to be doubling week by week, which is why we are doing weekly blood work. Dr. J. called it "organic" acidemia metabolic disorder. Organic, because we still need to diagnosis which type she is effected with.

Long story short. Dr. J. is out of his field on this one, his words not mine. He cant tell me if Vada will live through this. Its rare.Basically Vada's body is not processing certain acids. So on one side she is going with out them, on the other its building up a storage of toxic acids. Eventually those toxins can build up and "over flow" or over dose her. This can eventually cause her to slip into a coma then pass away. I'm not for sure on the time frames of any of it. I am assuming were okay for awhile because of the three week wait until we meet with Dr.H. from Chicago. Were starting a form treatment to see if it'll help, if it doesn't help it cant hurt.


We began treatment of daily intramuscular(IM) injections of cyanocobalamin, (vitamin B12). Over 90% of children with this deficiency respond to vitamin B12 injections. About 40% of children with this deficiency are helped by this treatment. We also started Levocarnitine orally. L-carnitine is a amino acid that your body producing naturally. Your requires it for energy metabolism and for proper use of fats. The bad thing with the L-carnitine is that a side effect can be seizures. However, if we were to not treat this new condition of Vada's it too could cause another type of seizure.

Our hopes are high, and our faith is even stronger. I don't know what God has in store for us. I'm not angry, but a I would be lying if I said I wasn't bitter. I silently curse the mom's, my friends, who complain about trivial things like their children having headaches, ear aches and runny noses. I have to stop myself before becoming too irritated. I try to remember that they haven't had to suffer with their child like this. Their complaints are significant to them as well, but I still just want to say "Really.. a head ache? How tragic." I try to remind myself that I was once that mother too. Its not fair. Its not fair for me to discredit their concerns and its not fair that Vada is going through this. I know. That's where my bitterness kicks in. The problem for me is that I just don't understand any of this. Why so much? Why with her? I hate to sound like a big baby myself, but she has been through so much, I wish I could take it for her. She deserves a fair chance at life. To run and play like any other child. She has enough to deal with, she doesn't need anything more. I don't hate God, actually, just the opposite. I feel a strong need to be at church, but I cant get there with Vada. So I listen to our pastors sermons on podcast and I pray, a lot. Sometimes I wonder if this is Gods plan. Is he trying to break me? Push me down as far as I can go? Test me? Show me where my place is while secluding me from my friends, family and activities? No. I believe not. Its something else. Maybe its to show me whats really important. Okay, I get it. I know that my husband and children are first, after him. Now, stop this mess. Let Vada grow and live and let us love her and watch her grow. Please.

Dr. J. made a comment yesterday, "Why so many diagnosis for such a small baby." he followed that comment by turning to me and saying "Your a good strong woman, and mother." All I could do was give a weak smile, because inside I was breaking. If he only knew that I was already shattered and worn. "If Vada can be so small and yet so strong, then I have to be too. For her." I said. I stood up and walked out to the desk to make our appointments for the following weeks to come.

That's all. That's all I know for now. Ill continue to read about it so I know what to expect and I will continue to update everyone.

I like to blog. However, I have a hard time finding time to do it. So with that being said, ill try to stay up to date on the important things in life.

And now to sweeten up the situation, a little eye candy. Taken with my cell, so not the highest quality, but still sweet.