Not too much to update, results, but no answers

We did the urine testing a couple weeks ago, and the results were nothing. They didn't find anything wrong with any of the hormones they tested for, all levels were normal. I finally talked to Dr. S. today, we'd been playing some phone tag, and I just took a break from calling too. Anyway, she said they were looking for any evidence of tumors, which the urine test showed there wasn't any evidence of it. She's still going to look into doing the u/s of the adrenal glands, but she said the odds of there being anything there, based on the normal urine results, are almost impossible.

So once again, we're without answers. I've run out of things to even try and research. We do have the second opinion endocrinologist appointment next month, although I'm not holding my breath for any answers there either.

What's even more frustrating now is that with the warmer weather, we've been doing even more. We spent 4 hours at the Botanical Gardens last week, walking all over. We've been being more active with her, outside, she's in play camp now, and still no results. She's even stopping herself from eating everything, on her own. Not always, but it's progress.

The only positive thing is that something in her mind or body has been switched, and she's been staying dry at night. So far this month, in 25 days, she's probably only been wet in the morning (or middle of the night) about 3-4 times. And not only that, we were waking her up around midnight to go potty, and we haven't done that for the past 4 nights, and she's still waking up dry. This is such a huge step!

Anyway, there isn't much more to say...... as always, please feel free to comment with ideas, suggestions, or anything else that you can think of! =)

I hope I'll have more to update this week

Well, Peanut's regular pediatrician, Dr. S., will be back this week. I'm not going to call tomorrow, because we all know that first day back from vacation is just crazy! I'll call on Tuesday though, and see what she thinks we should do next. Plus, hopefully they've done all the hormone tests on the urine sample, and maybe she'll have those results as well.

I did talk to Dr. B. last week, and he had received a copy of her MRI results. So he called to let me know that he looked them over. As far as he's concerned, they don't give him any answers related to his work. He still wants to see the adrenal glands though, we just have to figure out what's going to be the best way for them to do that. I would really hate for them to say they HAVE to do an MRI for that. Hopefully, they can just do a CT scan instead. Or the ultrasound like Dr. S. wanted to do.

I just feel like we're still standing in the same place, not really going forward. But, I will say that both of the kids have been really increasing their reading skills! Although Nutty Buddy has been doing well for awhile now, he's increasing his speed and words every day. But Peanut has really struggled. But the other day at the Dr.'s office, she read 20 pages of "Hop on Pop." That was the most she'd read at one time. And since then, she's just asking for more. We went to the zoo the other day and she asked to bring books with, for something to do!!!

Soo... I just hope that we can get some progress this week!

More news about her MRI

Now that we've had a little time to research this and learn some things, I can write a little bit more. Most of her spine is fine, everything normal. However, they found that she has epidural lipomatosis. This is a tumor-like, fatty tissue that can develop around the spine. It's in the thoracic region in her spine. It's rare, found more in men than women, and usually not until later in life. Which obviously makes her case even more unusual. It can develop on the spine from long-term steroid use or obesity.

Now, in Peanut's case, she's had some steroids in her life, but not a long-term use of them. More than likely, I would have to say that she's developed this due to her obesity. So this does nothing to explain her weight gain at all, instead, this is a result of the added weight. It can cause further problems, both neurologically and physically. The best way to fix this is losing weight, yet we still can't get that to happen. Even though she's becoming more active, not fighting us all the time, and eating even better. There's always a chance that she'd need to have surgery, but we're not even thinking about that yet.

We got this information from Dr. K. who is filling in for her pediatrician Dr. S. who is on vacation. She was returning my call since I had inquired about the MRI results. I guess Dr. S. started her vacation right after Peanut's test. It was nice of Dr. K. to at least call me back and give me the information. I need to get the results passed along to the neuro-ophthalmologist, so he can check things out. And then when Dr. S. gets back next week, we need to discuss her ultrasound. The techs at the hospital told the central scheduling that they can't do an u/s on a 5 year old, for the adrenal glands. But I know that Dr. S. said that's the best way, and I'm thinking she had something specific in mind.

For today, we had a visit with her pulminologist and opthalmologist. Both said she's doing fine. Her breathing is good, no problems there, Dr. A. said she's all good there. And then Dr. M., her ophthalmologist, said that the patching of her right eye, to strengthen her left eye, is helping. He found a slight improvement in her left eye's strength. So that was a good thing! We just need to keep doing that. And we'll see both of them again in 2 months. We also did a 24 hour urine collection that Dr. S. ordered 2 weeks ago. This will be testing a bunch of her hormones to see if there's anything going on there. Which is something we thought that Dr. G., her endocrinologist, would have ordered a long time ago.

Sooo... I will update more once we get more information from the appropriate doctors. I really don't know who we'll be seeing to deal with this. We're still researching, reading, and finding out more info ourselves. Thanks for all the thoughts and messages!

We have some answers

I'll have to write more later, but I just wanted to say that I did talk to one of the doctors today, and they found some stuff on her MRI. I don't like to keep anyone hanging, but I need to process through this and find more info. It's not cancer or anything life threatening, I'll say that. But there's going to be some issues to look at and find a course of treatment.

No answers yet

I called Dr. S.'s office today because of some problem with getting the ultrasound they want. I had called central scheduling, and they spoke with the u/s techs, who told her that they can't get the adrenal glands on an u/s in a 5-year old. I thought Dr. S. said she wanted an internal u/s done though. Either way, they wouldn't schedule it. I need to call Dr. S. and see what she wanted. So I called the office, and ugh! She's on vacation! She won't be back until next week.

I told the nurse what I was calling about and she offered to have Dr. S.'s temporary replacement answer my questions about the ultrasound. I'm like, "umm... no thanks! I'm not bringing another doctor into this chaos, and trying to explain what's going on!" So now we have to wait until Dr. S. comes back next week.

I asked her about the MRI then too. She tried to look it up, but said she didn't find anything. She said she'd look into it and give me a call back. I haven't heard back yet though, and that was about 4 hours ago. We'll see if they call with anything.

In other news, Peanut has stayed dry for the past 5-6 nights now. We get her up to go potty before we go to bed. And last night she wore underwear then too. This is a big thing!! My poor Peanut has been wearing pull-ups for over 2 years now. And I know that it's something that is so beyond her control. Luckily, she doesn't really mind wearing a pull-up, she doesn't even think anything about it. So at least she's not fighting us on it. But it's got to be so much more comfortable to be in underwear.

Not much else to report at this time... she''ll see the optometrist and pulminologist on Tuesday. She hasn't seen Dr. M. or Dr. A. for awhile. Although nothing has changed with her breathing. And the eye issues are still being worked on, with no answers. Soo... still in a holding pattern.

Still no results

No results yet, from the MRI. I'm not sure when they'll call. And I honestly don't know if it's a good sign, or a bad one, that we haven't heard from them! I just want to find out something!

On another note, the kids are officially registered for kindergarten! Dropped off all their paperwork today. Of course, they don't start for almost 3 months. And I know that Peanut's going to ask me at least 9-10 times/week when they start.