Monday, June 29, 2015

Diamonds in the Making Present "Roar"

Diamonds in the Making Present "Rapunzel and Flynn's First Encounter"

Diamonds in the Making "Love is an Open Door"

So for the last few years, out older stins have been working with the children douing skits, music vidoes and such, and here they are!! It's been ages since I've posted on here, and I will get to updating soon, but as for now, here's some videos of our Little Loves:-)Our newest video that our children made,. Ashley as Elsa, and little Michael as Jack Frost!

Thursday, May 31, 2012

Spinal Stenosis Revisiting?

Ash is almost finished with her second year of headstart. On to a new school & Kindergarten in the fall:o)  She is loving her new baby brother and really starting to show her personality.  She has such flair!

So now that our new youngest son is 7 weeks old I'm playing catch up on Dr.s appts after being on bedrest for the last 2 months of my pregnancies.

Ash had a check-up with her ENT. Her right tube that was just put in in December is out already!! That is some major head growth and a bit disturbing.  Her Dr. says maybe she'll be OK and to watch for signs of infection and we'll go on from there to see if we'll replace it or not.

She is still having these major bouts of sweating/tired which hopefully the endocrinologist (if he wants to see her) can shed some light on.

At her appt. last week with her pediatric orthopedic doctor he noticed she had developed clonus (involuntary muscle spasms of her ankle/foot).  I can't say that I'm surprised considering how much she falls on a regular basis, every time she tries to run it's just a matter of time before she falls.  I think it stems back to the syringomyelia (cyst in her spinal cord) caused from the compression by her foramen magnum.

 Considering the spinal cord doesn't regenerate it makes sense that there would be long term damage from the cyst. As the cyst filled up with cerebral spinal fluid it damaged it and from what I'm reading now apparently there is no cure for a syringomyelia. Crazy because that's not what I was told when she has her decompression surgery.

So at the moment the questions are is the clonus a symptom of the previous spinal cord damage, or has her kyphosis caused such a bad case of compensating lordosis that she may be experiencing spinal stenosis in the lumbar region as well. She's been complaining of neck & knee pain (mostly her right) for months now & sometimes she has pain in her ankle. Sometimes when I ask her what hurts she shrugs her shoulders & says very matter of fact "all my bones mom, just all of them hurt". She sounds like an adult with a "what can I do about it, it's normal" attitude:o(

She's scheduled for an MRI on Monday from top to bottom of her spine, so we'll be able to see if her syrinx (another name for a syringomyelia) has gotten any better/worse & how things are growing since her last post-op MRI in almost 3 years ago.

As I'm reaching our to the POLP community I'm learning that repeat surgeries are not so uncommon and these children need follow up. In my opinion follow up is common sense, but for some reason it seems as though when we went back to the neurologist for a follow up when she was still complaining of pain several months later, we were told all was fine and her issues were ear related.  UUUGH,.........Pause............. I'm claiming peace right now, I'm signing off and we'll see the results Monday and follow up with the neurosurgeon in 2 weeks, so until then all is good and that's where my energy is going.....

6 Month recap

Quick recap on where things have been with Ashley the last few months.
1. She had her third set of ear tubes put in back in December of 2011.

2. She has had more sugar issues, more lower numbers than high though, so the nurse practitioner said it looks like hypoglycemia. I'm waiting for a call back from the endocrinologist after they review her medical records to let me know if we need to follow up.

Thursday, November 17, 2011

Update on Ashley No diabetes:O)

So that's basically it, we had the lab results done and it turns out her average blood sugar over the last 3 months is 108, perfectly within normal ranges. We still monitor from time to time if she gets really sweaty & tired, just to keep tabs to make sure all is good though.
I can't help but think there may be something else underlying, but as for now, all is good and we're keeping tabs on every little fever or runny nose, sweaty day she has. She did have a 130 once after school and later that night was back at 96, so from what the endocrinologist said, when some children get sick they tend to spill glucose in their urine and Ashley fits that group. If it's related to achondroplasia I don't know, but at least it gives us a reason to not be alarmed next time it happens.

Sunday, October 9, 2011


So it's "let's play Dr time" again, better known as mystery diagnosis. I certainly hope that the information here can help other parents in some way as they run across Ashley's blog. It seems like this is an online medical journal for Ashley because every time I update it Ashley has another issue, so here's the newest.

Ashley started complaining of a sore throat with a yucky cough 2 weeks ago, 2 days later, she developed a ow grade fever, so we took her to the pediatrician to see what was going on. She didn't find any reason for the sore throat ( strep negative) and she said her right ear was a little red, so she gave her antibiotic amoxicillin for the ear infection and to combat whatever else was going on.

Her ear tube in that ear is displaced and literally only still attached by ear wax and is not connected to the ear drum. She has an appointment with the ENT in 3 days for that.

She kept a low grade fever through the time she was on the medication and on day 10 which was supposed to be her last day, she spiked a high fever. We could not get her in to see her PCP until the next day. She fell asleep early that night and slept hard.

The next morning ( Friday day 12 of symptoms) she woke up screaming twice, so we brought her into our room and she passed back out. My husband tried to have her stand up and she just fell over because she was so weak.

We let her sleep for another hour and at 10:30 she was limp as a noodle, very pale & lethargic. She told me she couldn't move her legs which of course freaked me out, so we brought her downstairs only for her to pass out again. She's normally up at 8am, so this is weird, Ashley is officially really sick.

Her symptoms are mimicing pnemonia, when we wake her up again at about 11 she says she's hungry, I'm tickled pink that she actually wants to eat, so she had rice krispies and 2 cups of pedialite that she drank in what seemed like one gulp. With her lethargy I was concerned it was dehydration hence the pedialite which I never have on hand, but just so happened to pick some up on sale a while back and came in handy at the time.

She fell back asleep at 2 and finally it was time to get to the pediatrician. They said they were concerned about the fever lasting so long and her lungs were crackly, so they were almost sure it was pnemonia and ordered a chest xray.

Knowing that this Dr usually like urine tests we went potty as soon as we got there and saved a specimen for them, which turns out they wanted to check.

So can you say Denial when the Dr comes to tell me that Ashley is spilling glucose in her urine and she has type 1 juvenille diabetes. They did a blood poke at 91 but her urine spilled 1000 in glucose. Then they retested 1/2 hr later in different lab & glucose with same urine showed 500 glucose and her finger poke was 220. Talk about confusing. We have no history of diabetes in our family. The closest instance is my maternal Grandmother with type 2.

She was supposed to get a chest x-ray to check for pnemonia, but they said just to take her to the hospital and they would run all the tests there in one place.

Dr. calls me on the way to the hospital and said the endocrinologist said sometimes when a child is sick they can spill glucose, but does not mean diabetes, we'll know more once the hopital runs tests.

So at the E.R. and blood glucose a few hours later came back 95. Pheeew, ok, feeling like it was a fluke and feelings of denial are justified. Chest x-ray comes up normal, no signs of pnemonia in her lungs despite the fact that her oxygen saturation won't go over 94 and her breathing is fast and labored.

They run several blood tests, a urine culture respiratory culture and we're waiting for results the next day. Still getting hot low feverish, but not enough to register on the digital therometers. I don't trust those, I think good old fashioned mercury work far better, but she's got a shot of zythromicine in her, so she's feeling better. No more lethargy, finally has color back and is more awake and vibrant on Saturday.

Saturday evening the respiratory culture comes back that she has rhinovirus/enterovirus and parainfluenza type 1 (which is causing the symptoms of atypical pnemonia). They're thinking she possibly had one virus and before it was done, caught the second virus.

We checked her sugar again Saturday evening a few hours after she ate lunch and it was 180, uh oh, what's up with this, thought we had this covered as a fluke??

So they ordered a test to check her glucose that will tell us if it has been elevated for the last 3 months. Mike just walked in the door with her a few minutes ago, they discharged her with a script to go get a fasting glucose test done in the morning and to make an appt with the pediatric endocrinologist.

Readers Digest version: 14 days with cold like symptoms, loss of voice for first 2 days, low grade fever on Day 2, slight (r) ear infection. Put on amoxicillin for 10 days, continued to have low grade fever for the course of antibiotic. Day 10 spikes high fever, tired, not herself. Day 11, pale, cold, lethargic, limp, very tired. Ate 1 bowl of cereal had 16 oz of pedialite, then tired again. Spilled 100 of glucose in Uruine, retest at 500 spillover blood pokes at 91, 220. 4pm ate 1 banana & 95 blood poke in evening (8pm)
Negative chest xray for pnemonia, but low oxygen level saturations & labored breathings. Dose of zithromicin. Day 13 seems ok, blood sugar after lunch 180, spilling keytones in urine, but less than day 12.

Day 14 discharged, with discharge note:
Primary Problem

Other Problems: has fever, acute otitis media, hypergylcemia, cough, enterovirus infection, parainfluenza and rhinovirus. (sugar was 100 2 hours after breakfast before discharge)

So that's our last couple days. Now onto what the heck is going on?

Continues on next post.....