Thursday, May 22, 2014

Emery Update

Prior to breaking her leg, Emery seemed to just be getting out of her latest "episode". These are the episodes that begin with an illness of some sort. The episodes include hair pulling, chin to shoulder tics, and head hitting. Clumps of hair, hard tics, and bruise causing hits. This episode began with a cold on April 3rd. So these OCD symptoms last well beyond the cold. I was grateful the OCD symptoms were lessening both in frequency and intensity. The sores on her knuckles from hitting were even beginning to heal.

After the break, I was terrified the trauma would send her into another episode. But as upset as she was at first, the symptoms did not increase.

Fast forward one week to Monday, May 12th. It appeared to me that she was hitting herself more frequently and harder. Was it just my imagination? She wasn't sick. No cough. No runny nose. Eating normally. Acting fine. On Tuesday, I noticed a clump of hair on the floor near her chair. My mom mentioned the increased hitting. I didn't want to admit it, but I knew the OCD symptoms were increasing and intensifying. By the end of the week, it he symptoms were once again at their worse. Bruising, open knuckle sores, hard tics, and new bald spots.

Ugh. What keeps causing my baby to inflict pain upon herself? I get depressed every time another "episode" begins. I pray constantly that God will help me to help her. Why can't I find what is causing these self-injurious behaviors? Why does the neurology department at DeVos not think this is a pressing issue? What is wrong with my daughter?

On Thursday of last week, Emery's therapist, Erin, checked her ears. Heavy wax build up - again. Erin suggested that maybe Emery has allergies and the allergies are causing the excessive wax and the pressure in her ears is causing her to hit herself. Yet another possible answer to why she is hitting herself. So I feel a touch of hope as I research this latest theory. Allergies do cause excessive wax production. Emery recently had wax build up in her ears and it was cleared up with Debrox. Emery has wax build up again. Her pediatrician stated that it takes about 2 years for someone to develop allergies in a new climate. The timeline fits. Could a daily allergy pill prevent the wax build up and cease the hitting, hair pulling and tics? Could it really be that simple? I have my doubts. Mainly because I am scared to get my hopes up. But I am giving it a try. I talked to the pediatrician and began giving her Benadryl and using the Debrox again. As of today, most of the wax is gone. After a few more days of Debrox and Benadryl, we will start her on an allergy pill. Maybe it will work and the self-injurious behaviors will stop. Praying.

I stumbled on to another possible cause for excessive ear wax production. I will go into this after testing the allergy theory.

Meanwhile, Emery's MRI that was ordered by her neurologist came back normal. No apparent brain injuries or defects. The neurologist also ordered a sacral ultrasound. She has what is called a sacral dimple on her butt. Apparently, this dimple is the result of her spine not forming correctly. This can cause issues in her brain. If she has no weakness in her legs, there is typically no brain issues. Since she has no weakness in her legs, the doctor thinks her brain is fine. He ordered the ultrasound just to be safe. I have been waiting for the ultrasound to be scheduled since April 3rd. I have called several times. I have a child that hits herself until she bruises and has sores on her knuckles but the neurology department doesn't think this is an urgent matter. Really? Why must I fight for medical help for my child? Just another ugh to add to an already long list.

I am emotionally (and probably physically) exhausted from this roller coaster ride. We are well into the fifth month of these issues and still no diagnosis and no solution. It is so hard to watch your child injure herself uncontrollably. She repeatedly asks for her blanket to be tucked securely around her so she cannot hit herself. There is something that will help. I just need to find it. So I will continue to pray, research, bug the doctors and test new theories. Eventually, God will lead me in the right direction. I just hope I don't miss it.


Friday, May 16, 2014

Family Happenings

A lot going on the past few weeks. Here is an update in pictures.


Ashley's 8th Grade Athletic Banquet
Smiling Emery even with a broken leg
Happy to have new stickers
Blake ready for soccer practice


Sleeping Beauty


Tramp fun before the injury
Blake and Avery's First Holy Communion



Blake and Emery with my Mom and Dad



Dad, Blake and Mom


Traditional Balloon Release by our 1st Communion Kids

My handsome son


Celebrating two years home for Blake and Emery at Chuck E Cheese


Last day of gymnastics - always being silly



Ashley and Friends
My monkey (pre-injury)


Easter Sunday


Coloring Easter Eggs



That is a lot of pictures! More updates to come soon.


Thursday, May 15, 2014

Just not Emery's year

I can hardly believe I am writing this post. On May 4th, Emery broke her leg bouncing on the tramp. We had only had the tramp up for 2 weeks and already an injury. The sad part of the story is we purchased the tramp mainly for Emery to meet her sensory needs. Now, she can't even use it for several weeks.

The break is just below her left knee. We were in the ER for nearly 6 hours. She was in tremendous pain and was beyond distraught. They got her pain under control within a half hour, but she was so tired and frightened. She just wanted to go home. She was sobbing so hard. In between sobs, she would say "mama, night night". She wanted to be home in her own bed. It was so sad, I had all I could do not to cry myself. They did x-rays and a ct scan. Fortunately, surgery was not needed. They put her leg in a splint and sent us home with instructions to give her Advil and Tylenol for a week.

Within two days she was in pretty good spirits. She still hated getting out of her rocking chair, but her pain was controlled and she was happy. She would not try using the crutches they gave us. So I was taking Advil regularly as well. Carrying around a 54 pound 9 year old with a broken leg is quite challenging. By the weekend, she was getting bored enough to try her crutches and within a day or two, was doing well using them.

She is now off pain meds and is trying to hobble around without her crutches. I am trying to keep her off her leg as much as possible, but she is one determined (and stubborn) little girl. She has a follow up appointment next Monday to see if she will need a cast. They told us in ER that her leg will take 4 to 6 weeks to heal. Every time she looks out the window and sees the tramp, she asks to "bounce". I am praying for quick healing so my little gymnast can get back out there.

I was so angry that this had happened. Emery has had such a rough year so far. I kept wondering when things were going to turn around. I guess God has His own plan. Maybe God gave Emery almost a year and a half of good health so we could devote our energy to her brother during his surgeries and subsequent recoveries. Now maybe God has decided it is Emery's turn. We are devoted to finding out the cause of Emery's issues and helping her any way we can. Since Blake has come so far, we do have the time and energy to focus on Emery. Emery is still having issues, the broken leg is just one more. Fortunately, the leg will heal and this experience will be behind us soon. I am praying we can heal all of Emery soon as well.