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.....

Monday, April 18, 2011

Special Insurance for Dwarfism

I realized I have not posted anything about special insurance for our little ones, so I figured I do a quick informational post for other parents wondering what is available.

I'm sure there is more available than what I am familiar with, and if other POLP know more, I would love the info, but here is what Ashley has.

One of the first things we did was got her signed up with Children's Special Health Care Services (CSHCS) They are separate from regular insurance and is for specialist doctors.

CSHCS is ran through our (Michigan) states medicaid office in a unique way. There is a yearly premium, which is a lot less than private insurance, or if you qualify for state aid, it is very low cost or even free. I did a google search for a link, but it seems it is a Michigan program, although I'm sure each State has it's own program.

CSHCS helps with getting your child to specialists you choose who fit your child's needs. Ashley has a list of special doctors (ENT, Neurologist, Specific hospitals, Orthopedic doctors etc). These are over and above her regular PCP. When she is referred to a doctor for a specialty service, I call CSHCS & they add that Dr. to her list of providers.

Once a doctor is on her list, she can go to them and CSHCS picks up the bill. We have not had to pay a single c0-pay for any of Ashley's surgeries or specialist appts because of this insurance. This has been extremely useful considering the surgeries Ashley has had.

They also reimburse for mileage to & from Drs appts and I think provide transportation if needed. If there is an out of state appt, or one that you need to drive far for & possibly stay in a hotel overnight, you can get the travel costs pre-approved and they will reimburse for that as well.

I'm sure there are other things that they provide, but those are the benefits we have used for Ashley. You should be able to talk to your state's local health department or social services dept to get that started.

Ashley had a public health nurse for her first couple years and she would come out to the house & do evaluations on Ashley to see how she was progressing and help with the paperwork and finding programs that would benefit her.

Another great source of help for Ashley is Early Intervention.
You can find some info here and find help in your specific state:O)

She was enrolled with them when she was just a few months old and started receiving speech & physical therapy at the school when she was about a 19 mo. old. They start this program very early and the paperwork can be a little time consuming, but it is extremely worth it! She has been getting speech & physical therapy since that time on a weekly basis.

The coordinators will develop an IEP (Individual Education Program) that targets the exact needs of your child, and work to get them in the programs that would benefit them. All is through the school system where you live locally.

Once your child has an IEP through this program, a lot of doors are opened for the future as they move through school as far as making sure they have the services they need as well as adaptable devices if needed as well.

The teachers that Ashley has are Awesome!!! They had a program called Families First that was a one day a week class I took Ashley to for educational interaction & I was able to take her brother as a newborn as well because she was in the class. Once she turned 3, we were no longer eligible to take the class for free, but after that it was only about $60 for 10 classes, so it was worth it for a great program. Thank You Mrs H !! (Mrs. Hungerford) One of the most amazing, fun, energy filled teachers I know:O)

We meet every 6 months or so to form a new plan for Ashley, see how she is progressing & set new goals. Ashley is meeting her goals wonderfully!

Also because Ashley had an IEP, she was able to be in the headstart program at the school. There was a waiting list of about 80 children this year for the program and we did not meet the family/income requirements, but she was still able to enroll.

Headstart is just like preschool , except is is paid for by federal grants to help children who may have social/physical or environmental issues that would set them behind if they were to jump right into kindergarten with no preparation, so it's a huge help.

Ashley was very shy, so being with other children even though she's half their size is teaching her independence. Also, she'll be in the same school district for her elementary years until we decide to home school her, so she'll grow up with these children, so they' won't see her as different, just Ashley:O)

Even if a family doesn't meet the requirements for the program, it they have an IEP, by law there are a specific number of children they have to enroll due to laws. I have to say Ashley's teachers, principal and coordinator really made this happen and I am forever grateful!

We set Ashley's goals for her first year of preschool last August before she started and at her conference a couple weeks ago, her teacher's word about Ashley's performance was "Phenomenal"

I'm gonna brag a little bit now.... Ashley just turned 4 in March, She has been reciting her alphabet for over a year, she can recognize every letter of the alphabet by sight, & can tell you the sound that each letter makes. She also knows all her basic colors as well as shapes:O) Since her little brother is 2, he is right on track for the same except earlier, because he soaks everything up. If fact our older twins had him reciting Japanese a couple days ago, and he pronounced them great:o)

Ashley's speech has been one of the biggest areas of concern for us, and she has been in classes for over 2 years now with the same therapist Jennifer whom she adores. Looking back, we should not have waited so long to do ear tubes for her because it really delayed her speech when she was first forming words because she was basically hearing things as if they were filtered though water.

** Note to other parents** If a Dr tells you your child needs ear tubes, don't do what we did & ask "Is it ok, to wait, will it get better on it's own ?" Because chances are it won't, and you don't want want to set them further behind. Proactive, Proactive..hind sight is 20/20 right??

Anywho.. back to the that she's in headstart, instead of taking her up to the school twice a week, Jennifer comes right to her class to give her therapy. It's been great that she's been able to be with the same teachers that she's pretty much grown up with and she'll be able to be in the headstart again next year, and be right on track to rock out Kindergarten:O)

Over the summer our goal is to get her working on reading small words. We've done a little bit with her refrigerator letters, but I'm going to work on some flashcards, so hopefully when she goes back to school, she'll be at least recognizing the basic sight words (ie.. and, the, is, cat, hat, etc)

So those are the couple programs we have her on that have been extremely useful to us and are helping Ashley. I'm sure there is more too. I've heard that LP qualify for Social Security too, but I think it may by a SSI ( Supplemental Security Income) and if so there may be income requirements to make you eligible to receive it, so we've not really looked into it because her needs are being met already.

If anyone knows more I am missing (which I'm sure I am) I'd love to hear & include them.

Tuesday, March 22, 2011

Ashley's YouTube Videos

I figured I would post a link to Ashley's YouTube Videos for Ya'll. A little bit of her & the rest of our clan:O)

Kyphosis update

We took her back to the pediatric orthapedic doctor over the summer to keep tabs on her kyphosis that had "appeared" to go down after her foramen magnum decompression surgery. That was not the case as it has been over a year now. She has been to see him every 6 months since she was born.

Her walking has gotten better and she does fall less often now...finally. We have been monitoring her kyphosis and expecting to see a change since she is walking more now. Unfortunately that is not the case. Her kyphosis even though it looked better after her surgery is still causing extreme lordosis which makes it look worse. She has a 43% curvature in her spine, which gives her a total "Bhuda Belly" as we call it. She is very curvy and hard to dress.

In fact, because we have a move this month I opted to actually try to find her clothes that would fit at a retail, talk about frustrating, now I remember why I started making her clothes for her. It was really a refresher on why I started Lil' Ashley's Closet, because there really is a big need for clothes that fit properly on our children's unique figures!

After over an hour in the toddler baby sections at Khol's I found 7 items I thought could work. Get them home, to try them on.......nothing fits without altering. I really thought I had it covered, but nooooo, the dresses either made her look like a prego 1 yr old, shirts even though they had buttons at the shoulders still didn't fit over her head, and if they did, were 2 inches too long in the arms.

Leggings & the occasional dress seem to be about the only thing I can buy her from a store that fit without altering. No biggie, at least I love to sew, so it works out fine, but I really feel for mothers who don't sew and are faced with this dilemma. I'm looking forward after this move to get back to making some designs for other parents and fill this need in our dwarfism community. Running 3 businesses takes too much away from the true needs out there, so I'm slimming down my other shops and focusing on Lil' Ashley's this summer, prioritize, prioritize.

Anyway, got off on a little tangent there, back to the ped ortho doctor. Since her kyphosis was not getting better, we decided to try a brace. She got to pick the color, it's a pretty pink and worked for the first couple days because we over-exaggerated how beautiful her new "dress" was. becuase she had been so used to walking without it, she started falling a lot more, and within a week, she was throwing all out temper tantrums and hiding it if we even mentioned it.

Every time before school I would try to put it on her it would be literally almost an hour of crying and saying she couldn't move and it was too tight (even though I had it on the loosest setting) Her teachers commented that she was falling more at school now and in the first week had 2 bumps on her little face from falling. It straightens her a lot, but it also sets her balance off, because she's been so used to having her balance with the extreme curve in her back it for so long.

I made a deal with her that since school was only 4 hours at a time, we would wear her brace the rest of the day once she got home. She was tickled pink with that, but still with the screaming and crying. Literally it takes 2 people to get her in it after we catch her. So the question we're faced with is it it doing more psychological damage than it is worth?

The ped ortho doctor and a couple dwarfism doctors agree that there is no proof that it makes any difference. They said, try it and see how she tolerates it, but there's no guarantee she's not just prone to have extreme kyphosis & lordosis. So we could be putting her through the torture she feels it is with no helping her. We wanted to take the pro-active approach, that's why we had her fit for it, because even a little help is better than doing nothing, right? Why do nothing, when we can be proactive and try our best to help her at this young age. The better she is now, will mean the less pain and surgeries for her in the future, and that's what our goal was. So as for now, we still put her in it occasionally and she whines & cries & refuses to move, says "she can't move" (which is totally not true, she is a drama queen) but once she has it on for a bit and we get her mind on other things, she does fine and will wear it all day. And that's the brace issue.

Potty Training Revisited

She just has her 4th birthday in March and we decided enough was enough with her lack of potty training. We had been concerned that she was not able to feel the need to go potty because of her surgery.

She started potty training over 2 years ago!! But every time we would ask her if she needed to go potty, she would say "no" then pee in her diaper. So we removed the diaper, and she was naked booty for a few days and fully potty trained. She has her own little singing potty that she can get on & off by herself, so she's independent about it which helps a lot. We've had a sticker book for a couple years, but stickers weren't enough incentive for her. We used sugar-free candies for the first couple days, then for poopies only, and it works like a charm. Sometimes I still give in & give her candy just because though:O)

I really didn't want to go as far as the candy bribe, but come on 4 years old?? She is such a little princess, she has no problem letting others do everything for her, including wiping her hiney, so we had to put our foot down. We were able to learn that in fact it wasn't that she couldn't feel it, she just didn't want to. When we switched to panties, she peed in them 3 times the first day, so we still go "booty free" most of the day when she's home. Even though we still put her in diapers when we're out & about or at church, she usually still tells us when she has to go.

Speaking of princess, at this very moment she has her feet up in her baby brother's face ordering him to"take my socks off" least she told him "thank you"