24 July 2004 Letter to Jessica- adjusting to the news

Dear Jess,

You ask how I am doing at adjusting to the news of Virginia’s diagnosis of growth hormone deficiency?

Well, I "think" I'm okay with the whole thing, but I have been having the most unrestful dreams about it all night for a few nights, and I am a bit tense and distracted- i.e. I "look" like I'm functioning normally and then I realize I haven't finished any of the last 3 things I started and I didn't even notice... so I guess I am just dealing with it in kind of a muted and calm way, but still having to "process it". Or to put it another way, consciously I am fine, but my subconscious is still working on it. LOL

 

I checked with my endo's nurse Dawn, and she said that Dr. Ham has already ordered the MRI and they started the insurance pre=approval process for it yesterday, so we will schedule it whenever insurance approves it, although they started the rGH approval process last week. She said it's faster to get the MRI approval anyway, and they will definitely wait to start rGH until the MRI is done. (That’s okay with me= gosh, if there were a tumor causing her GHD, we would NOT want growth hormone to make the tumor grow more! Eeek. But I don’t think we can even get approval to even GET the rGH until we show a clear MRI.) But it may be mid-August before the MRI is scheduled, so I am going to enjoy our vacation and as much as is possible, put this from my mind until then, since there is nothing to be done for now, anyway.

 

Delilah

 

4 August 2004 - Letter to Mother-in-law: MRI on brain scheduled

We are home from vacation, which was wonderful and relaxing… but I am now anything but relaxed, after arriving home last night, having been on the road for ten hours with three small children by myself. NOT relaxing! Anyway, the reason for all the haste in rushing back is I got a call yesterday morning (when I was 500+ miles away from home en route and planning to go about 250 miles a day, which is as long as my toddler can be pleasant in the car) that they scheduled Virginia's MRI to rule out brain tumors or pituitary anomalies for Thursday morning at 7:30 a.m. That means that it definitely would not work out to arrive back in Dallas on Thursday! So we pushed hard and are home. Thank God. None of us would like to enter a car again anytime soon though, particularly Virginia. She is 17 months old today- wow. Time FLIES. She just got her first pair of shoes (now that she is finally walking well enough to be able to need them) in a size THREE yesterday. She's so tiny that I can almost ignore the fact that she is getting older!!! But dang, has she got a temper. LOL It was wild driving home from GA yesterday... I kept thinking "two years ago, I was making this drive, still in total shock that I was pregnant, and before Isaac ever had his first crash... how much my life has changed!!!"

 

So today will be paying bills, doing mountains of laundry, meal planning, grocery shopping, cooking for the first time in weeks, housework, etc.! And then in the morning, I’ll be schlepping off to the hospital with Virginia. I welcome your prayers and positive thoughts for the MRI tomorrow, and good results from it (i.e. no tumors, and a normal, if inefficient, pituitary gland), and continued good luck with the insurance company.

 

By the way, Isaac's blood sugar was pretty unstable over the trip. He had four days of lows in the last week, which just bites. I think it might be related to a growth spurt. But it made for a very tense time, and three of the four lows were after Kurt had already left vacation for a convention, so it was just me with the kids. Isaac’s blood sugar level responded to food, but he was just hysterical and it was hard to get him to eat the bites he needed to level out, because he was kicking and hitting and screaming. Three bites of food, and he was back to his usual sweet, equable disposition. I hope we are done with that for a while, because it just was lousy. I am not sure what brought all that on unless it was just being out of his normal routine and in the sun and heat a lot, it just seems like he should have been okay with the amount and frequency of protein I was giving him. I suppose I will never know what brings on these problems and I should have adjusted to that by now, but I continually try and wrack my brain for what could be the missing link to our understanding of what triggers him to go low, so I could prevent it. Sigh. Anyway, he has been fine for three days now. So maybe it's passed for a few months at least, or more! <fingers crossed>.

 

We will probably not have any results from the MRI until next week, but I will definitely let you know when we do. I hope and pray there is nothing much to tell. It is supposed to be a "ruling out" MRI- finding something would not be what we expect to see and would not be good news. Since it is only 6.5 weeks after her first endocrinologist appointment, and she has already done the blood work, x-rays, and GHST prior to this, apparently things are moving quite quickly in her case. I guess after this, we move on to waiting for the rGH to be approved by insurance. Hopefully since Virginia appears to be sensitive to some stuff anyway (like the DTaP vaccine permanently discolored her leg with a big blotch, and certain foods cause a rash, etc.), we can skip any rGH with a likelihood to a reaction and move on to an rGH that few people have reactions to. I will talk to the Dr. Ham about it.

Delilah

 

5 August 2004 Letter to Michelle- Had the brain MRI

Virginia's MRI went fine, it sure was easier than the other tests which involved being awake- this was under sedation. I wasn't thrilled re putting her under, of course, but in terms of wear and tear on my nerves, it was far easier than holding her down while she hysterically flailed and screamed. My sister came with me, and my friend Cristy stopped in to check on us too. The MRI was the last hurdle (I think) before getting insurance approval for the rGH, although my understanding is that insurance may try to deny a couple times before approving. We will get results next week. I am glad that all the testing is over. She had only grown 3.5 oz since two months before, which in a way helps solidify that she really does have to have the rGH, which helps me be more accepting. I am ready for her to outgrow the 3-6 month clothes, since she is now 17 months old!!! But she is walking and cute as a button, tiny or not. I am grateful for her!