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.

Location, Location

As most of you know Vada and I met with the Geneticist; Dr. Hoganson, yesterday. We had gone to see him because originally they thought that Vada had a condition called Methalmalomic Acid Anemia. Turns out she us has low B12, which is great, especially compared to the MMA. The low B12 is treatable.

Prior to this appointment we had gave gave Vada a weeks worth of daily B12 injections. Then they re-tested her levels and her B12 sky rocketed. So, now we are just going to monitor those levels to make sure she is doing alright. We also put her on Poly Vi Sol, which is a daily vitamin.

We kept our appointment with Dr H. just to be able to discuss any concerns or any other findings he may have had. The whole visit was quick and easy.

We also discussed my lab work that was done the week prior to this visit because we were concerned that I may have very low levels of B12 which was in return causing Vada to have the low levels. Turns out my B12 levels are low, but not too low. I also have low iron and my Thyroid is low as well. I wasn't really surprised since I have been mildly anemic since before my pregnancy with Vada and I have had Hypothyroidism since the birth of Kiliegh. All I need to do is take a better daily vitamin and bump up my Thyroid medications.

Before we left our meeting with Dr. H. I asked for a copy of Vada's Karyotypes. His staff said that they would look into it and get back to me on it.

What does having a copy of Vada's Karyotypes mean? Nothing, except I would be able to see the third, twenty-first chromosome! I don't need proof that Vada has Down syndrome, that's not why I asked for my own copies. I asked for them because the opportunity to see your own child's Karyotypes does not often come up. Most people will never have this chance, which is fine, but since I am in a situation where I can see them, I'm going to do so. Carpe diem!

After meeting with Dr H. we had to wait two hours before we met with Dr. Jennings, the Neurologist.

The visit with Dr. J. also went smoothly. No surprises, no real concerns. Everything is pretty much staying the same. We are continuing to wean Vada off of the ACTH and if everything goes well she should be off by mid November. We are changing her "maintenance" medication from Keppra to Topamax. She HATES the Keppra, it's incredibly hard to get her to keep it in her mouth let alone to swallow it. Were hoping that this new kind will be better for her to take. That in return would be better for me. It is so stressful knowing that these medications are her life line. If she doesn't take them the seizure will can come back and will take over. If I cant get here to take them, then it's my fault. Irrational or not, that's how I feel.

So the appointments were yesterday. Earlier this morning Dr. H's assistant called me to let me know on the progress of getting the copy of Vada's Karyotypes. She said something about them being archived and that it may take a couple of weeks to receive them. She also said that I needed to directly contact the hospital to sign release forms. No big deal.

The next thing she said was very unexpected. She asked if I was aware that Vada has Translocation Trisomy21. At first my heart started to race. At first I was confusing Translocation with Mosacisim . I knew what both were, I just got swept away for a second.

I was not aware that this was Vada's full diagnosis; Translocation Down syndrome. In all honesty, it doesn't mean anything different for Vada. Just an extra word to add on to one of her diagnosis.

For us, Justin and I, it could mean that every child we have from here on out would have Down syndrome. That would be, if one of us were in fact a "balanced parent". There is something like a 1 in 4 chance for that to be our situation, so for "piece of mind" she suggested that if we planned on having more children in the future, we should get genetic testing done.