We heard back from the geneticist at Primary Childrens regarding Aaron's lab tests. The doctor very non-chalantly told us that Aaron does not have acyl-carnitine translocase deficiency, but rather - a glycogen storage disease. With how soothing his voice was - I felt like this was a huge improvement. Aaron's body doesn't store glycogen well (glycogen breaks down glucose for energy); therefore, Aaron's body uses other pathways for energy, which has been what has made him ketonic (spelling?) - that's what he has been hospitalized for. He then told us to just make sure Aaron has a high complex-carbohydrate diet ... and then to give him corn starch mixed with chocolate milk every night before he goes to bed. VERY easy - Tyler and I were relieved. So - today, I did some internet research on glycogen storage disease ... and HOLY COW - I'd rather Aaron have the translocase deficiency. According to the research I did - Aaron must have an extremely mild case ... and even still, I'm stressed out. I'll be calling the doc tomorrow to find out why he was sounding so unconcerned about this diagnosis. But, in the mean time - Aaron has been so healthy and energetic - entirely symptom free.
We wanted to go to Baskin Robbins tonight for the 31cent ice cream cones. We've been planning it all week. However - when we drove past BR ... the line wrapped ALL the way around the store. Crazy. And even MORE crazy - it is FREEZING cold and icy windy tonight. So - now not only is it crazy ... it's stupid. Seriously - people were out there with little kids shivering. Do they really think ice cream is going to taste good after freezing nearly to death waiting? Needless to say - we did not go. We hit good ol' faithful Carls Jr. instead. :)
We are anxious to get a garden in now that we have our own land (yippee!) However, we are pretty much clueless as to how to do this successfully. We purchased a variety of seeds of plants that we are excited to eat ... and I checked out many books from the library on growing vegetables ... but, seriously - they are not quite in English entirely. There's a lot of scientific procedure-ing that needs to go on, apparantly. I was hoping I could just stick the seeds in the dirt - add water - and voila. Hmmmmmm. Anyway - the soil out here is extremely rocky ... so, I'm considering a "raised garden". Since we don't have a fence - or really a yard at this point, I think that might be a good idea . Any suggestions? Kristy - talk to James for me, k ... give him a reason to look at my blog for once. :)
So - there's the latest scoop(s). Hope all is well with everyone.
9 comments:
Okay so have you been giving Aaron the corn starch yet? How does he like it?
Baskin Robbins was a joke! A JOKE!! I can't believe people were outside waiting for the icecream-LAME! I saw the line and thought not worth it.
I didn't know you guys are going to grow a garden. That sounds like fun. If you are going to be as obessed with the garden as you were the game Virtal Village then you will have a Awesome garden.
anyways love you guys. I miss you! I know you don't live that far away but it seems like you do. Anyways Love you!!
Michelle! I used to work at Baskin Robbins and had to scope for 31 cent night. Holy Cow was my arm sore after all that! It used to be free cone night too! Wow how inflation works.
Brandon and I are doing the Square foot garden. We had a class for relief society/elders quorum this winter. Can't tell yet how it will do, but so far our tomatoes have frozen. ;( We'll see after it stops being crazy and snowing in May!
well im glad you found out what is wrong with aaron and choclate milk sounds good even with the corn starch am i crazy to think that?
by the time i could have gotteb to a baskin robbins it was way tolatew to go
your garden looks nice and sounds kinda fun
Sweet Aaron, bless his heart. I wish it wasn't such a chore for him to eat! He reminds me of Kent that way. That he's overall pretty dang healthy is a testimonial to his good mom! He'll be OK.
That looks like a great way to plant a garden. Good luck.
OH Michelle!!! I am so happy they have located the problem! BUT - I have to say, for your own sanity DON'T read up on it on the internet. For some reason it always sounds more terrible!!!! If your doctors are calm, then you be calm! I remember when we were told that Auri had Metobolic Acidosis, the doctors were the same - not worried, said it was totally treatable. Then I went to the internet. Big mistake. By days end I was in hysterics, thinking she was going to drop dead at any moment! Seriously, trust the docs on this one. Cornstarch in milk will probably work wonders for him!!
Also, there has to be a point where 31 cent ice cream isn't worth it. For me it would be about the moment I thought about getting my kids into the car, knowing the circus that we would find. It varies for everyone, I suppose. But really - waiting in the freezing cold just wouldn't work for me.
Good luck on your garden!!!
Okay, I just wrote a novel for you! Love you!
There are several types of glycogen storage diseases. Did they tell you which one it was? I read online that most "are relatively easy to control through symptom management". Other more serious ones would have presented shortly after birth. Just make sure you are vigilant with his diet!
I am so amazed with Ohio in the spring! Everything is in bloom right now and it is beautiful!! It is so easy to grow things out here - you basically just throw seeds down and poof! out comes food. In fact, nobody has sprinkler systems (bad news for James). Grass rarely needs to be watered here - everything is incredibly green.
I agree with Lindsay about the internet - it gives you WAY too much scary info!! I'm so glad you found out what he has and that he's healthy and happy!
Good luck with the garden - I'm attempting that myself this year. We'll have to compare notes at the end of the summer. :)
I am so glad you are now in the know! That helps so much. You have got such a great family. I think you are really an amazing mom.
how is aaron doing with the cornstarch?? that's great that the treatment is pretty easy!
i can't wait to see your garden!!!
i LOVE ice cream... and cheap ice cream is always satisfying.
but waiting in the freezing cold for it...???? i don't think so!!!
Post a Comment