Friday, May 30, 2014

VictorEEEEE!





Best end of the school year EVER! I cannot tell you how proud I am of this little guy. He has never made it more than 10-15 min at the all school field day. He did all events except one and earned his playground time! Best start to the summer EVER! I am so thankful to have such a support staff and school for E. Armstrong Elementary is the BEST!

Thursday, May 29, 2014

Ear issues

E has struggled with ear fluid since he was 2 years old. The most obvious solution is tubes. We will not do them because we already lost our first son, Porter, during a routine medical procedure. Our boys have different genetic make up due to a genetic issue between me and my husband. Porter and Emerson are exactly the same on paper. Too much #19 and missing some #14. They present this  unbalanced chromosomal abnormality very differently. E is pretty healthy having only ear fluid issues. Porter was born in distress and had oxygen loss at birth. Porter had low vision and a known condition called bilateral coloboma. Porter also had an abnormal heart that required open heart surgery at the age of 2. We almost lost Porter then as he had many known complications from such a procedure. We were told then Porter would need another procedure probably around age 10-11. It was a balloon valvuloplasty aortic stenosis. This was supposed to be a very safe procedure with no known risks. We took Porter to Children's medical center and on Feb 24, 2006, I held my son for the last time as he was disconnected from life support and died in my arms. Porter was 7 years old at that time. They are NO safe procedures. 
(Side note: We did tubes for Porter, and he had trouble coming out of anesthesia and needed oxygen. It was very scary)
We have seen allergists, ents, alternative medical doctors and finally came full circle back to our pediatrician to treat E's ear fluid with RX as they come up. I thought we had finally found an answer with the latest histamine blocker, but E had side effects and we had to take him off. After the rx was removed, the side affects disappeared and the fluid came back. With ear fluid comes some very scary behavior. E falls and has a very short temper. I realized after the past few days we may be dealing with ear fluid again and took him to our pediatrician. Sure enough there was fluid in his left ear. He is on rx and doing better. We are really stuck in a rough place. Any allergy seems to go straight to his ears. E is small for his size and his ears are not big enough yet to drain on their own. He clears between each infection and does not have them when the weather stays very hot or very cold. Unfortunately we live in Texas the allergy capital of the world. He will grow out of this at some point. Until then... We wait and treat. We also are looking for a new dr. Our current pediatrician is moving to Midloathian tomorrow! We may continue to drive to her if I cannot find another dr willing to treat ear fluid as often. She was Porters dr and E loves her so much. He loves the entire office staff! They love him too.  We also lost our fabulous speech person due to an HPISD private speech policy change and one of E's teachers is not returning. She is staying home with her little one. We are so happy for her but will miss her so much. Change is inevitable...

Tuesday, May 27, 2014

I am "that" mom

I used to see children when I worked in the mall throw some rip roaring fits! I remember thinking why is that parent just standing there? I would never do that... I taught school for 18 years and thought I would be so well trained to be a mom... I could never have been more wrong. I am that mom that stands next to her non verbal child while he has a rip roaring fit. I stand quietly and whisper to him to calm him down. I hold him to be sure he does not hurt himself or others. Never say never...
I was that mom today...
It took 2 teachers and me to get E to the car after school today. He ran from the teachers today in school and had several other behaviors resulting in losing his playground time after school. This was very upsetting to him and he let anyone around at dismissal know it. He ran behind the bushes, threw mud at me, screamed to the point of almost vomiting and other various attention grabbing behaviors. I wanted to find a rock to crawl under, but instead I cried quietly behind my sunglasses and helped E get into the car. He continued to scream and yell the entire ride home. When we stopped at a red light the car shook he was kicking and screaming so much. I did not dare look at the car next to me for fear of seeing a look I would never forget. When we got home, E was still in tears. I opened the back door to get him out and he signed sorry. I lifted my sunglasses and he saw me crying. He wanted me to put them back on. He did not want to see me cry. He hugged me tight and cried on my shoulder. He was so sad it broke my heart all over again. We went inside and sat down. E continued to cry and I told him it was ok. He could try again tomorrow to earn playground time after school.
Yes, I am that mom.

Monday, May 26, 2014

Sometimes these things happen...

It's been a few years since I blogged. I have been posting on Facebook and Instagram proud of the accomplishments of E over the past few years. It has occurred to me that while E is accomplishing many things and there are definitely reasons to celebrate, my current social media posts often show one side of the story. I want to use this blog to tell the entire story. I have learned a great deal over the past few years in dealing with the things that come my way through E. One of the most important things I have learned is patience and staying calm are the best ways to handle situations with E. I learned holding my feelings inside can really cause some major migraines. At first, I would appear calm, but be very upset inside. This meant I was only pretending to be calm. I thought I needed to find an outlet for all my anger and frustration I was holding inside. Maybe I needed to take up running again or do yoga. Now I realize  I simply need to understand that none of E's behaviors are meant to upset me. He has to work very hard to express a thought or request something. He has more patience some days than others. He prefers sun over rain. Just like everyone else, some days are easier than others.  Understanding that will make it easier to really be calm and not just appear calm.
Today has really been a test of this knowledge. E has been in rare form. I think he is a human barometer! All the extra sugar did not help either!