Calm After the Storm

Yesterday, Kendall's examination under anesthesia went well. They were able to avoid using a breathing tube (thank you Tera!) so she didn't need a steroid, and she didn't have to stay for 24 hours of observation!

Her prescription changed a bit, and they got a good read on her pressures. Unfortunately, they were extremely high. Her right eye was 39 and her left eye was 28. Normal ranges are between 18-22. Kendall has thick corneas, so that may be part of the problem. The other obvious thing associated with high pressures when a child has had cataracts removed is Glaucoma. Our Pediatric Ophthalmologist is discussing it with a Glaucoma Specialist he works with to form a plan. Kendall will more than likely start eye drops. If that doesn't work, we face the possibility of shunt surgery. Which sucks. Her eyes are growing though, so that's a good thing. Her right eye is ready for an IOL, but her left eye still needs to grow a bit.

She came home, had physical therapy, then slept for 4 hours. She also enjoyed a swim with Nonna for the first time in a few days too. She slept well last night and awoke this morning without any hives. Thank goodness. I just laid in bed with her for about an hour this morning soaking in her sweetness when she's not sick. It's good to have my girl back.

Thanks for all your thoughts and prayers. She's definitely on the road to recovery, just in time to go on vacation and start school.

This past week was yet another reminder to take it one day at a time. A friend shared this quote on Facebook that another friend on the CP board shared. So.Very.True.

"For all we have been through, there is so little I know for
certain except for maybe this: Motherhood is about raising--and
celebrating- the child you have, not the child you thought you
would have. It's about understanding that she is exactly the person
she is supposed to be. And that, if you're lucky, she just might be the
teacher who turns you into the person you are supposed to be."
-author unknown

Hospital Visit X 4

Some months I think it would just be better if we rented an apartment next to Cook Children's Hospital. This past week it has been our home away from home. It's only 25 minutes from our house, but that drive gets really old. Especially in 105 degree heat with a child who screams when you stop at a red light or stop sign.

I hate to sit here and complain, but that's what comes naturally when I don't sleep. And I haven't been sleeping. Because Kendall hasn't been sleeping!

She short of it is this: Urinary Tract Infection, put on antibiotic, developed hives, developed high fevers, blood sugars out of control (we're talking over 500 with high blood ketones)changed antibiotic, determined she has a penecillin allergy, restless nights and inconsolable crying. Blah blah blah.

I've told her medical history a thousand times over (because I forgot to print it out before we left.) Then today she had a two hour pre-op appointment for her Examination Under Anesthesia tomorrow morning. I had to go through the medication list, reasons for turning down the IMBG scan, Mitochondrial debocle, etc... with the anesthesiologist. I did all this while Kendall screamed and yelled the whole visit!

My brain is fried. But hopefully we will find out tomorrow that her eye pressures are in a safe range, and will leave with a more accurate prescription. We then plan to drop off her Rx and hopfully get new glasses and sunglasses before our vacation to the beach. (or at least before school starts.)

The biggest upset for me the past few days during my drama-filled-no-sleep hours, is that Aetna has declined Kendall's wheelchair. She's grown out of her current one, and they are now saying it is not medically necessary and more for convenience. Whatever. Am I suppose to let her lay in bed all day? By the way, she sleeps in bed with us, is getting too tall, and rolls too much for any of us to get any rest. We are also in need of a Sleep Safe Bed, but I'm too beat down to start that process!

Please keep her in your prayers tomorrow morning at 5:30am (being Type 1 Diabetic has its advantages, she's the first patient of the day) as she goes under general anesthesia. Hopefully the breathing tube will not cause its usual trouble in our sweet girl.

Summer Sick.

Poor Kendall has been sick since Tuesday. She spiked a pretty high fever, her sugars were wacky, and she was extremely cranky. As always, high fevers combined with high blood sugars result in pretty nasty seizure activity. That makes me sad. And exhausted.

Turns out a UTI is the culpret. She gets them all the time, but her reflux contrast study and bladder ultrasounds don't show anything out of the ordinary. I guess little girls tend to get them more, especially when they are 3 and not potty trained, and sit with a pommel everywhere they go.

They were also concerned her throat was red. (I mean, what's a visit to the Dr. without a strep swab?!) I could be wrong, but I think her throat was red because she was screaming so much. Either way, she's on an antibiotic, and we are enduring the waiting game to find out if her urine grows cultures that require us to change up the medication, or if her strep test comes back positive.

She's mostly just groaning and looks miserable. But I'm sure she'll get better. Eventually.

Please keep her in your thoughts. Poor thing can't catch a break!

Artane Full Dose

Last month at our Spacticity Clinic appointment, Kendall started a medication to help with her Dystonia. She began Artane and slowly increased the dose. Today she will be on the max dose which is a half a tablet three times a day, totalling 3mg each day.

Almost immediately we started seeing results. Her left hand opened up a lot more than normal. She almost immediately stopped all the arching she does when in a sitting position. Her toes aren't as balled up anymore, and she has been making a lot of new sounds. She's also back to using her pointer finger to touch things on the iPad.

At first, I thought I was crazy thinking something would work so well so quickly, but others have agreed with my observations!

This is a video of Kendall clearly crossing midline multiple times with a purpose. That purpose is being a little stinker and throwing the washrag I was using to clean her face off onto the floor. Justin and I are totally guilty of using reverse psychology on our ornery 3 year old. If you ask Kendall not to do something, she does it! I think it's kind of cute accompanied with her smile right now....but I'm sure that will change in the future.

We're just proud of her for interacting the way she does, and enjoying being a little girl. She's also back to loving listening to her brother play guitar, so he doesn't have to go outside in the 115 degree heat to practice anymore. Hopefully that will last.

Can you tell who runs the show around this house?!

Emotional Weekend

We've all been walking around in a bit of a haze the past few days. On Saturday morning we woke up to a crime scene one house away. My mom called early in the morning and told us our street corner was on the news due to a shooting. Of course, Kamden was sitting next to me, so we rushed outside to find crime scene tape and police vans in the road. Turns out it was at one of Kamden's best friend's houses. Out of respect for the family, and considering all of my information is hear say, I won't go into detail. Kamden's buddy's dad was shot in the house. It is such a tragedy, and a reminder to hold those you love close, since we never know what tomorrow will bring. One of the sweetest kids I've ever met (who has spent almost every day at our house this summer) lost his dad forever on Saturday. His mom lost her husband, his parents lost their son. And it has rocked our neighborhood. So, please keep their family in your thoughts and prayers.

I woke up this morning to a phone call from our Director of Nursing in our School District. His assistant informed me when I called back that we are now entitled to use our private duty nurse next year at school with Kendall. I'm not sure why this took 6 months, and loads of e-mails to get the answer we wanted...but it did. And I don't want to question anything at this point! I'm thrilled. This is going to be an awesome year for Kendall!

These next few weeks are filled with getting the kids ready for school. We are going on vacation and returning the day before school starts, so I'm trying to get everything in line this week! On Wednesday Kendall is having another examination under anesthesia for her eyes. We hope to get an even more accurate prescription for her ginormous glasses, and discover that her pressures are within a normal range. She will also have to be admitted due to her previous issues with anesthesia....

I've kind of gotten out of the habit of blogging. I guess living life has taken over writing about it, but that can be a good thing :)