Best Trip the ER EVER!!

We were attacked by the never-ending, stomach virus this week. Daddy = down 3 days , KT = down 4 days; Mommy = down 2 1/2 days; McK = miraculously healthy.

Thursday, we had to send out for the reserves - (Thanks, Grandma K! ) - to take care of Kaitie since her parents were too ill. But as KT continued to throw up for the third day, I packed her and headed to the EmergiCenter. (Wait, dear Reader, the good part is on the way!)

Now, KT hasn't eaten for three days, drank very little and is sleeping on the floor when the nurses wake her up to give her anti-nausea med's and fluids in an IV. KT hates the blood pressure cuff, ooh an IV will be fun! NOT! After 3 minutes of trying to calm her down by singing (didn't work), I gave up and decided to use this as a "teachable moment" to try to connect KT's emotions to the situation.

I started with "KT, are you mad because you are stuck?" She repeated that and added "Down"

Then as they poked her "KT, are you mad because it hurts?" (When else can I teach her what "hurts" means?) She repeated that and added "I want to go home."

Spontaneously.

Repeatedly.

Then she added "Bad, Bad Mommy".

:) Isn't that cool! KT could figure out who was to blame AND let them know it!

I know it's not a "typical" milestone but we are very happy!

Starting up the blog again...

It's a big Saturday night here - rainy outside - and inside, an "all-girl" slumber party in the family room. KT is asleep in the IKEA tent, McK is asleep in her princess sleeping bag, Daddy is practicing his guitar parts for church tomorrow and I'm perusing autism blogs. Party On!

Which brings me back to restarting the blog, if I'm a-gonna read 'em, then I need to be writing 'em, too. Seriously, kids on the ASD spectrum are so varied, maybe our experiences with KT can encourage or guide someone else. Maybe not in a big, life-changing way, but in small, get-me-through the day ways, cause the one thing that I have learned is that is there is no one place that can give you all answers - not any of doctors, or therapists, certainly not the school system or the insurance companies - And that's assuming you know enough to know what questions to ask! So here we go again! I'll try to fill in the gaps since I let the blog lapse as we go along....

If you want to read a more established blog by an mom with an autistic child, try http://www.autismarmymom.com it's a good place to start and she's linked to other blogs as well.

KT's Story

For such a little girl, my CurlyGirl has quite a long story. Most of the pregnancy was fairly normal, just a few hints of what was to come. Induced labor, just like her big sister, no big deal. After 9 1/2 hours of "pre-labor", I still hadn't dilated beyond 3 cm but they were moving me to the labor room, any way. (not the delivery room). In fact, the nurse asked me if I wanted to walk, (I didn't) and was swiftly wheeled to the new room where my water broke. Ken and I were the only ones in the room, the bed hadn't even been made yet. KT was born 11 minutes from the time I left the induction room.

From this room KT was taken to the Neonatal Intensive Care Unit. Unrelated to KT's "unusual" entrance, she was born with a condition called PPHN (Persistent Pulmonary Hypertension). This condition causes the pressure in the blood vessels leading to the lungs to increase to the point where the baby's blood continues to bypass the lungs after birth, like it does in the womb. These condition is often temporary and reversible; most children who survive PPHN have no lasting effects beyond a possibility of developing asthma or hearing problems.

KT was in NICU for two weeks before the condition reversed itself on Thursday; she was going to come home on Monday...but on Sunday, she developed jaundice and a necrotizing infection of the digestive system. Two more weeks in the NICU...KT came home. At this point, our only concern was that the physical therapist in the NICU noticed that KT was "floppy". Her muscles weren't "tight" enough and her tendons had pulled her legs into an unsual position. At the time, the doctors thought this was due to the strong sedatives and medications she had been on for the first month of her life. We are very grateful to Vickie for arguing with the doctor that KT at least needed physical therapy for her legs. Because of her willlingness to adovcate for us, we had therapy and follow-up doctor's appointments scheduled before we left the hosipital. Within a month of coming home, we had therapists coming to the house.

There was never a point where anyone said "There's something wrong here." The closest was when her neurologist said, "You've known for a while that something's not right here." Even now we don't know exactly what that is. As KT missed more and more milestones, she gained more and more therapists and doctors. For over a year, she had three therapy appointments at home and five at Sparrow each week.

"So what's wrong with your daughter?" is what my students usually ask. I'll answer that next time I post

We're Back On-Line!

Hello again, friends! It's been quite a while since I posted. We barely had returned from the Mayo Clinic trip when I had gall bladder surgery on Halloween. Turns out recovery from the surgery wasn't quite as simple as it sounded. Fairly painless but lots of fatigue, for 4-6 weeks; Oh, and you can't lift anything over 20 pounds - like small children. Anyway, enough about me - it comes down to, too tired and too busy to post until now.

I'm posting now for two reasons: 1) I've reconnected with a lot of friends on Facebook recently I wanted to provide all our friends, older and new ones, with the newest chapter in KT's story 2) I'm starting to feel stressed out about a deadline at school and procrastination is an excellent motivator to work on anything besides the thing I'm avoiding.

I'll try to keep the chapters short. If you're new to the blog, skip around - take away what you find interesting or useful. As I've searched for information to help my CurlyGirl, some of the most useful things have come from other "Mommy Blogs" whether it be strategies, TV shows or even just what kind of questions to ask the doctor or the insurance company. I'll write more soon - God Bless!

Dr. Patterson called...

We've got some very interesting news from Dr. Patterson from the Mayo Clinic. While he still is waiting for some the test results, he has received much the results from CurlyGirl's spinal tap. Most of the results are within normal range, but her results for Folinic acid (INN) or leucovorin (USAN) were very low. The range for normal is 40-100 and KT rated a 41.

Dr. Patterson consulted with another neurologist. This other neurologist has had success with treating children with low levels of folinic acid with greater levels of folinic acid. There are not any possible negative side effects with this treatment. Folinic acid is generally used to help children recover from chemotherapy treatments as it encourages cell regrowth and replacement.

A British case study of children with a genetic disorder that inhibits the absorption of folinic acid describes those children as having: global developmental delay, possible failure to thrive due to inability to gain weight, difficulty eating. (Sounds a lot like our CurlyGirl).

A French case study also describes treatment of a 6 year old girl with many issues including autistic-like features and gross motor skills problems associated with low folinic acid levels. When treated with additional doses of folinic acid, it corrected the autistic-like features and improved motor skills.

We're trying to remain realistic but yet extremely hopeful about the possibility that this course of treatment could help KT. We've really only wanted to know what to expect for her future and the possibility of a treatment is overwhelming right now.

(Or it could be the lack of sleep from the trip that Mommy took to the ER last night. Turns out my gall bladder is rebelling and must be removed. I wanted to come home since we were expecting Dr. Patterson to call. I still need to schedule the surgery some time in the next week to 10 days. By the way, the ER at Sparrow is really nice - private rooms while you're being evaluated. Staff was very helpful both at Sparrow and at St. Lawrence. I had my first ambulance ride today!)

This is getting to be to much for one post - I'll post more about our experience at Mayo later for any other parents getting ready to take the trip.

PS Emilie - Depending on the test results, we are tentatively scheduled to revisit with our geneticist, Dr. Ellison, in the early summer. He wanted to see CurlyGirl again when she was a little older. At that time, he said he might reconsider running the genetic test for Angelmans if she presented any of the characteristics for the atypical phenotype but the more time he spent with her the less he seemed to consider this a possibility. Thanks for commenting - My prayers are with you and your daughter - God Bless!

Mommy K

We're back!

Well, we're a couple of days behind. Too tired, sick kids and no DSL all contributed to the delay in postings. (By the way, the only hotels that wanted to charge for $9.95 for one night of DSL were the "3 Star" ones: The Sheraton and the Marriott in Madison; the "lesser quality" hotels all provided free DSL.)

You might have noticed that I'm blogging from home on a school day, while I was getting ready this morning McK threw up a couple of times. She seems fine now - maybe too much "yummy" food yesterday or nerves about today. She really liked "living all together in one room" at the hotel. Between missing that, losing her new "best friend", Maddie, and both McK and Mommy going back to school, it could be too much stress.

CurlyGirl came out of surgery fine with very interesting Band-Aids. On Thursday, we met with a genetic historian who wrote a pedigree of our families, primarily tracking developmental delays of any kind. Then we met with Dr. Ellison who interviewed Daddy and I and examined CurlyGirl looking for any traits she appears to share with other children that have a common phenotype, or appearance.

Dr. Ellison confirmed
1) She does not have the Angelman's genetic disorder
2) She's not autistic
3) He can't point to a specific disorder.
So we are going to be scheduled to see him again in 8months to a year from now when more signs of a specific disorder may appear. He's also recommended that KT be seen by the Developmental Delay Clinic at Mayo where they can be involved in evaluating her skill levels and in recommending appropriate therapies and strategies. It takes about 8 months to get in to the Clinic, so we're hoping that our return visit can be scheduled during summer vacation.

Then we met with Dr. Patterson who confirmed that almost none of the test results had come in yet. They will send us a report through the mail in 3 weeks or so. They did reserve DNA for future testing should Dr. Ellison or Dr. Patterson want to test for a specific disorder after reviewing the results. But unless a chromosome is missing a relatively large piece or a big piece of DNA has been copied on the wrong chromosome, they are unlikely to find a cause with more "clues" as in more examples of KT's missed milestones or when there is milestone she can't meet.

We managed to have a little fun along the way and learned why you should drive around LaCross, Wisconsin during Octoberfest. I'll blog a little about our adventures later - Mommy K

Mural at Mayo - 16th floor

About 1 year ago, the 16th floor of the Mayo Building was remodeled and dedicated to children's care. The floors, walls, ceilings and art was designed around the theme of the 4 biomes found in Minnesota and the different species of plants and animals that live there. Hopefully, I'll post more pictures later, but here's one of CurlyGirl looking at a mural of 100 different species found throughout Minnesota. The artist cuts pieces out of cardboard packaging to make his murals.