Meet Angel

Hello! welcome to my blog. There is a lot of things going on here, I have a passion for many different things: everything from kids and crafting to cooking and music. Although I have these passions, my number one is my family. My husband and my two children. The whole reason for my having on online presence is my daughter Angelinna.

To get started, let me tell you her story.

Being pregnant at 19 was scary enough, but when the doctor got that look on her face half way through the pregnancy; thats when I was really scared. "well," she said, "you are not growing in time with weeks, we are going to schedule a sonogram just to check on the baby." she explained to me that the centimeters of the belly (top to bottom) should match the number of weeks along, I had been right along the graph, until that 22 week appointment. I had to wait 2 days for the sonogram. The time seemed like years, but the results showed that she was healthy and proportionate, she just paused in growing.

Being my first pregnancy, I had no idea what to think. I searched my memories for anything in my first weeks of pregnancy that could have gone wrong: nothing. The second half of my pregnancy continued to grow very slowly. I kept myself busy working two jobs and learning how to crochet. We had 5 more sonograms before delivery, all showing that she was healthy.

Finally, 40 weeks came and we brought sweet Angelinna into the world. She was 5 pounds, 12 1/2 ounces. 19 inches long; a mouse in the nursery with all the new baby boys that came in the hospital that weekend. Everything was healthy! we were good to go at the 24 hour discharge, free to take our tiny bundle home.



I was now 20, with no infant experience. That tiny little baby was the scariest thing I had ever come upon. We soon discovered that she didn't like to be still for even a second. The automatic swing became the best investment ever made. She slept in it for months, because the other option was to walk up and down the hallway all night. So she slept in the swing next to the bed, and in the living room, and in the kitchen, and anywhere that we could haul it along.

A good baby, she was quiet and content most of the time. It didn't take long to discover that she had a connection with music. Any music playing would catch her attention and captivate her. Live music was nothing short of heaven for her.



Her first year was typical of most babies, eat, sleep and be loved by others. It was around her first birthday that we became concerned about her development. She was not trying to be mobile in any way. She would just sit in one spot until someone came to move her. Playing meant holding as many toys as she could looking at them. With the help of our pediatrician we had her tested through the Lewis-Clark 0-3 early childhood program. within a week we had scheduled therapies weekly at our house. Speech therapy, Occupational therapy and Physical therapy. We also started going to Kindermusik with babies in her age group.

Then the genetics results came back: Ring chromosome 8
The pediatrician said that she had never heard of it, nor could she find any information and referred us to the Genetics Research Lab in Spokane WA. A two hour trip North ended in heartbreak. They had never seen her condition before, there were no other documented cases with diagnosis. We came home, saddened, but still full of light. Angelinna was most definitely and Angel, sent to us from God. We don't know what is in store for her or our family, but we do know that there is a plan for her, we just need to wait and see.

Angel had what we were calling "episodes" where she would stop breathing, roll her eyes back and turn blue. If you have never seen a blue child, thank God. These episodes happened every 3-6 months and every time we would go to the emergency room. They didn't know what to say and diagnosed her with severe asthma attacks. In the fall of 2009 she had 3 of these episodes in one day. I took her the ER and again they sent us home. We had been home for just a few hours when it happened again. I took her in and asked that she be admitted for observation. Our general pediatrician ordered an EEG, results came back that she had abnormal waves in the back/left area of her brain. Leaving him to believe that she was having seizures.

We went to see a specialst at the children's hospital in Portland OR. the child neurologist there led us to believe that her condition was not severe, that he was treated children who had hundreds of seizures a day. He said that there was a good chance she would just grow out of them. We left Portland with heavy hearts and more questions.



Over the next year the seizures became more and more frequent. Finally I asked that we go to a different specialist. That's when we went to Sacred Heart in Spokane WA. We had another EEG as well as an MRI and met with child neurologist Dr. Wendy Osterling (now Eastman). She is amazing.

It didn't take her long to say "these are definitely seizures, and she needs to be on medication for it. It is not safe for her to be playing on a playground, or in a pool, or alone in her room and have a seizure." She was so matter of fact about it. Finally, we had found a doctor who would just give us an answer, and a way to solve it.

We also saw a genetics team while at Sacred Heart Children's Hospital. They didn't have a whole lot of new information for us about this actual genetic abnormality. But they did reassure me that there was nothing that I could have done differently during my pregnancy. Something happened during conception and that created my Angel.  They told me that I could have 100 more children and the odds of creating another child with Ring Chromosome 8 was slim to none. Also, another concern of mine: my son will not have to worry about passing on a gene to his own children one day.

We came home with a perscription for a medication called Keppra. Angel does not take medication well, and there is no way we would get her to swallow a pill. So with the advise of Dr. Osterling, we crush up the pill and squish it between some cheese. Every morning and night she gots her "medicine cheese" as my son called it.




We kept her on Keppra for about a year, but were still having break through seizures approx. 6 weeks apart. So Dr. Osterling decided to try her on a new medication called
Topiramate.  This new med seamed to be controlling the seizures better but her behavior was out of control. Angel was angry all the time, she didn't want to socialize with anyone, even her family. She spent all of her time in her room, tearing up every book she could get her hands on, breaking toys left and right. Her tantrums were getting violent. Overall, the medication was not controlling her seizures enough to make her behavior even remotely worth it. She was hardly eating anything, even her favorite fruits and her normal high water intake had dropped considerably.



IN 2013 we brought our concerns to Dr. Eastman (same doctor...she got married!) So we started the transition to Lamotrigine. It took 3 months to gradually get onto a 100mg twice a day dosage and then completely off of the Topiramate. She did warn us a side effect of a full body rash that could be serious very quickly, but thankfully Angel did not experience it at all.

Over the next couple of years we added a couple more medications to help even out her behaviors and her to help with her sleep cycles

Lomatrigine, Clonidine, Clobazam, Fluoxetine



Angel is now 13 and into her 7th grade year at Jr. High. She is non verbal, she has little to no life skills and is still wearing diapers.  She loves music, looking at books and organizing cards, cartoon figures and stringing beads.



In hopes that I might reach a family out there, searching for answers, I write this blog. Keep checking in, as we learn more information about her abnormality and development, we will share our progress here.

In the mean time, I am a mom, working a full time job and enjoying every day with my beautiful children, working away at the sewing machine to sell at Etsy.com, so I can hopefully grow into a family business for her to work at when she is an adult. 


Signing Off,
Nichole


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