Friday, September 26, 2014

E is sick

I know in my head, logically speaking, that kids get sick. Then they get better. In my heart, I know the pain of losing a child and it is very hard not to go to that scary dark place when E is really sick like he is right now. We had to switch to a new dr because our other dr moved out to Midloathian. This new dr is a wonderful person and I know her on a personal level as well. I took E to her and she thinks he likely has a virus. Our previous dr would have given us antibiotics anyway. I am trying to wait like our new dr said. Without blood work there is no real way to know and blood work for E would be far too traumatic. Plus the waiting for results. I have been very stressed the past 48 hours worrying about E. He hardly ate or drank Thursday. He did better today. I have been vigilant with the breathing treatments, and given ibuprofen as needed. After a dose, E perks up and seems to feel better. He is still very congested, but at the dr exam Thursday his ears and chest were clear. He did have fever. Sounds like I am doing everything right, but I feel awful. Once something bad happens to you, the kind of life changing real bad thing, like losing a child, you are forever changed. The possibility that your child might not recover is all too real. You over react at illnesses. You cry and stress constantly while your child is sick. You even revisit all the things that happened before with the child you lost, just so you can be sure not to make those mistakes again. Well maybe you don't do those things, but I do. I did not realize until tonight just how large a trigger E being sick was for me. I am doubting my caregiving skills. Worried he should have antibiotics, worried even if he has them, he won't get better. Just when I think, it's been years since Porter died. 8 years and 7 mths, surely I have learned to live with this loss by now. It's times like this I realize I have not learned to live with it. You never fully learn to live with a loss so life changing. You get along through the days. Maybe you have weeks or months where you don't cry, but it's always there. The hole left in your heart in your life, in your world. It does not matter whether E gets antibiotics or not. Until he is 100% better I will worry and be stressed. I think all parents feel the same way. Sometimes just writing my feelings in this blog make them easier to endure. I have tried everything else in the past 48 hours. Hopefully facing and writing my fears will give me some relief and E will feel better soon.

Saturday, September 6, 2014

E's turning 9!

In a little over a week E will be 9. This is a blessing, but also makes me sad at the same time. E will now be 2 years older than his older brother Porter ever was. It's difficult to explain how there are certain times of the year, certain dates on the calendar that take me right back to the day Porter died. I find myself trapped in that day. Reliving every last moment, decision and very last minute I spent with Porter. I get stuck there for a while. I know it's not a place I want to stay in and I cannot stay there. E needs me now and will for a very long time. It's just so hard not to mourn the birthdays I missed celebrating with Porter as we celebrate them with E. I find myself worrying non stop about E's safety and well being. I even kept E home from school one day this week to take him to the dr just to be sure he was ok. His behavior had been rough at home and school so I thought something could be wrong. He was physically fine. I think our new pediatrician may think I am crazy because he has been fine the last few times I took him in.  I also tend to go way overboard on E's parties. It's just a small family and very few close friends party. I think I over plan because I  am celebrating E current birthday and Porters birthdays I missed at the same time. I did veto a magarita machine my hub wanted to rent, but I have a giant slide coming, a huge balloon number 9 coming, custom take home E cookies for party favors... A little much for just a little family bday party. I am hoping that now after I have blogged about this I will be able to move on from the sadness I feel and be able to celebrate my crazy, but sweet E's birthday tomorrow at his little party. I am hoping the empty feeling and hole in my heart I feel every day over my sweet Porter being gone will shrink back to the manageable size it usually is and not the gaping hole it feels like today.

Tuesday, August 5, 2014

Summer time blues

Its so hard to see E have some much trouble with the summer. Thank goodness for ESY summer school. That was such a big help. It has ended and we have a full month off. I have planned things for him to do everyday, but it is not the same as having a routine. It seems to cause him physical pain when the schedule changes. He has woken up almost every morning asking to go to school on his iPad. I tell him it is summer and school is on vacation. Then I tell him the 3 things planned for the day, but that is usually met with a scream. He craves order and routine. I have taken him to the dr the past 2 Mondays to be sure there was nothing physically wrong with him. There is not, ears are clear... I was looking for a reason, something I could fix to make things easier for him. I just feel like everything is so hard for him. He struggles with communication daily, so anything on top of that is just almost too much for both of us. E lashes out at me because I am the one with him all the time. He looks to me to fix things and create order for him. After enduring some of his "lash outs" I have to admit my physical and emotional state take a beating. It is hard to find the strength and the patience at times. Luckily, he looks at me with those big blue eyes and signs "sorry" and comes over to hug me. I know he has trouble expressing himself and his expressions are often very inappropriate when he is upset. I am sure all parents want to fix things that are hard for their children. I am no different in that way for any other parent. It would just be so much easier if my life was just all my facebook pictures. I feel like facebook is my happiest memories, the ones I want to look at when I am sad or frustrated. I felt guilty for a while posting all those happy pictures and having such a hard time with E, but now I realize why they are so important. If I go scroll through my facebook wall, I will be smiling in no time. I think I will go look at it now...

Friday, July 4, 2014

4th of July🇺🇸

Things with E are never easy, but the joy on his face makes them worthwhile. E loves the HP parade. He likes riding in it and throwing beads to parade watchers. This year he sat in the back of the truck for the first time in a chair. I still can not believe he did it!! The parade route and wait time was over 3 hours! Amazing!!! I was done being outside after that, but E still wanted to play outside with water. We got home, ate lunch and went outside for another 2 hours!!! Came in showered and napped and went back outside for the LCC fireworks. By this time E had used up all of his "good" behavior. I was left with an over tired, hyper active, water and sand focused child. He did watch fireworks amount his protesting for bubbles and candy... Whew.
I am exhausted, but happy E had a good day. I am also glad the 4th of July only comes once a year.

Thursday, June 26, 2014

Never try to plan...

I have learned in the long month since E summer vacation began it's almost certain plans will change. Even the best laid most careful plans will change. To anyone else, that makes perfect sense, but to E it's a hard thing to handle. Change makes him nervous. It must be painful too because he seems to scream in pain when they occur. Due to a rash popping up all over E, I chose to keep him home from summer school the last 2 days. Today and tomorrow. It's the right thing to do, but it is not an easy thing. I moved his swim lesson to earlier to break up the long day. Our scheduled therapy had to be cancelled for other reasons. We have played outside, gone to swim lessons, played inside and now we are back outside playing. So far the talley on meltdowns is 4. (2 at swimming and 2 at home...) It's only 12:50. Seems like it should be close to 5:00 pm by now...
Well now it is 5 and there is much to tell. We were outside from 12:30-3:30 and E was still not ready to come in. I told him Daddy was coming home early and we could ride in the jeep to get yogurt. He just needed to come in and eat dinner first. E ran all over the back yard away from me. Once inside he continued to run away and added in throwing things. This behavior used to anger me but now I understand it's because he cannot talk. I feel like he really thinks if he can express his wants they will happen. I try to affirm I understand what he wants and that it is now time to come in for dinner. This does not go well at all. E ends up in time out in his room. We are still potty training so he is not dressed as we were on our way to potty. After a few minutes I go in to talk to him. He immediately acts like he is going to potty right there. I tell him to go to his potty. He looks at me and pees on the floor. You know my day is going bad already so I decide to ignore this and proceed with evening routine. Bath and then maybe dinner. He did not eat much when we came in out of protest. He lost the ride in the jeep to get yogurt as a consequence of his behavior. He tries to barter for a ride in the stroller and I tell him, yes, in the morning. He looks at me and goes on. Thank goodness for that speaker for PCLDA a few years ago on positive behavior. Bedtime is here and not a moment too soon for this tired mommy. Luckily I have more things planned to do tomorrow. Maybe there will be less time to meltdown.
I hope...

Wednesday, June 11, 2014

Change, change and more change

E started ESY this week and that has really helped bring some consistency to his days. So far he seems to be doing ok. ESY is 3 hours and a full school day is 7 hours. It's harder for him during the full school days to stay on task. Thankfully we still have Ms Erin our behavior specialist. We have not scared her away yet. She has worked with E since he was 3. (I think we may need her for life. Ha ha.) I am still looking for a speech person. E is asking for Ms Pam daily. I told him it's summer now so she has her children home. She will come later. The problem is she will not come later as HPISD changed their policy and no more private therapy at all to HPISD families. Bummer. I can't tell E about that yet because we are already dealing with our pediatrician moving. She has a temp location for July in Los Colinas and will have a permanent one in Midloathian after. I have an interview with a  possible new Dr on 6/19, but after today I am seriously considering making the drive to Midloathian.
To say E was crazy is an understatement. I did my best to prepare him. Telling him Dr Clifford has a new office and there are new people. We were going for an ear recheck. I always take him after RX to ensure they clear up. I was afraid there were not clear after the behavior Monday and his lack of sleeping ALL WEEK so far. We headed out to the new office and instantly E was upset. Whining and making nervous noises. He knew we were driving a different way. He knows the routes to our usual spots and we have to go the same routes or he gets upset. I blogged about this 4 years ago and it's still the same! We get to the new office and it is much like the old in that it's near a hospital. E is panicking at this point and does not want to get out of the car. I show him a jeep we can go touch so he gets out. E loves Jeeps!!! He does not want to hold my hand and flops to the ground several times. Finally get to front door and he does not want to go in. Screaming and making more nervous noises. Lots of people staring. I don't look up as I have learned not to, but I feel them. I get him to a bench near the from door. I am whispering to him the entire time. I used to yell, but then we both look crazy. I whisper to him. This is a new place. It is ok. Dr Clifford is here. She is just going to look at your ears and we will leave. He decides to get up and come with me. We are quite a site heading in. I am trying to keep him close, but he is resisting and making every louder nervous noises. We find the office and enter with a bang. Literally, I think we shook the entire building. Lots of more stares. This time I made the mistake of looking up. I go to the window and sign in. E is still making loud nervous noises. I apologize and say, we have trouble in new places. There were children on the side we entered, but the desk person directs is to the other side and says it is more child friendly. There are fish painted on the wall and one mom and little girl waiting looking at us like, please don't come over here. E is STILL making noises. Luckily one of the girls from the old office is there and says,"Emerson! Come on back!" We go back and E continued to make nervous noises. We see Dr Clifford and E runs and gives her a big hug. She checks him out and he is fine. No fluid. Not red throat. I am relieved and sad at the same time. If there is nothing physically wrong then it's behavioral. E is having a hard time adjusting to the summer. Once again something fun and easy for most other children creates stress and panic for E. I will continue to try and help him adjust. Water and outside time seem to help the most. The day continues and there have been a few more bumps in our road as we make our way to bedtime. E decided to obsess over the neighbors water bottle as I looked for a few seconds of adult interaction. Finally inside and E realizes the jump start baby CD is not here. I left it at my moms. There are several other games but he wants that one. Get E upstairs for a bath and the metal curtain rod falls of the wall in our master bedroom almost breaking a lamp. Seriously...  Out of bath and winding down with a game of bowling. It's bed time soon! Tomorrow's another day! An easier one... I hope.

Monday, June 9, 2014

Rainy day and ESY begins

I was so hopeful this week would be easier. ESY started and there would be 3 whole hours a day that E would be busy and I was going to get so much done...
E struggles with changes in routine. He gets very nervous and tends to act erratically. Summer is a care free and unscheduled time which I remember loving as a child. For E, summer brings fears, anxiety and lots of uncertainty. I do the best I can to tell him and show him a daily schedule. He repeats it in Proloquo over and over. I reassure him each time that is what we are doing. Sometimes, things change. E had a great first day at ESY and I am very thankful for that. When we left I noticed he was a bit erratic and tried to let him touch the sprinklers and stop signs and do other things he needed. I parked the car on the usual street, but it was a little closer to the school  because ESY is not as crowded as school during the year. Perhaps this was a BIG mistake. E was upset the car was not in the other spot further down the road. I told him I would park there tomorrow. We walked down so he could see the spot and walked back to the car. E did not want to get in the car. I was already muddy around my waist from picking him up several times. He finally got in the car, but the car seat still was empty. Behaviors started. Car key was tossed in the front seat by E and he locked the doors. Thankful I had the back passenger door open, I climbed in and opened the front door setting off the car alarm and more behaviors. Let's just say it was not a pretty site and my 12:30 board meeting, I missed. We made it home and the day was revamped. I sent my report for the board meeting I was missing. E regrouped and has now been outside for 3 hours playing with water. It's very calming for him. It's raining, but no thunder so it's still safe. Very muddy and messy and he is completely calm and happy. Maybe the rest of the week will be easier...

Thursday, June 5, 2014

All E day 2

I am not sure my day is any different from the other millions of moms out there with a toddler. I think the thing that makes is hard for me is E technically is 8 years old, but developmentally still much younger. Hard to say for sure what age because the testing completed on him requires verbal answers and he is still pretty much non verbal. He uses Proloquo on his iPad, some signs and then he points a lot to colors and I am guessing. It's like playing charades all day with really bad clues.
Anyway, for this day I made sure to have 2 planned activities. Not just 1 like Tuesday. We met Ms Erin at NP mall for some walking. E was beyond excited to see the Hammering Men back. I made sure we met her early, 9:00, before the mall opened knowing E would need some "quality" time with his friends. He was beyond excited! Greeted each one with a big hug. He was also signing more indicating he was concerned they might leave again. I assured him they would be there for a while.
E did a great job walking at the mall this morning and he was so happy. It was a 90 min fast pace walk for me and Ms Erin. It did not help my errands are usually driving through banks for work or non profit. What do banks give kids? Suckers!!! E had 2 suckers before we even got to the mall. My one cup of coffee was hardly a match. After the mall we came home to play outside and eat lunch. 2 1/2 hours outside with water and mud. Time for a quick lunch and then to swimming lesson. E said no all day to swimming, but once we got there, he was so excited. He kept signing "more" when it was time to leave. I told him we have another lesson tomorrow. When we got home I was glad we decided to forgo the grand opening of the HP Town Hall. I was exhausted! E was getting there too. I gave him a bath and we played in his room while he ate dinner again. E was excited Daddy came home before bedtime. E does not sit and watch TV or play video games yet. He is a very active child.
I am exhausted at the end of most days and have rarely sat on the furniture in my house, I would not have it any other way. I love him so very much. I just hope I can keep up with him for the summer.

Tuesday, June 3, 2014

A Summer day with E...

Technically it's not summer yet and this was not the first day schools been out, but it's the first full day home with E trying to keep him busy all by myself. The day started better than yesterday so that's a plus. E woke up asking about the same thing he went to bed requesting. Jump Street. He found an old video on his iPad and would not stop asking. By asking, I mean jumping up and down and touching blue and red things in the house. Wanting me to reply, yes we are going to jump street when it opens so you can jump in red and blue blocks. I called yesterday to see if they were busy for the summer yet. Most school are in session so I figured it would be a good time. It was only 8 at this point so I tried to engage him in a few other activities and then we went for a walk. After the walk, (E uses a special tomato stroller when we walk) we got ready to head to Jump Street. We got there at 10:15 and the place quickly filled up. We had not been in a while so his usual friends were not there. He made new ones quickly and I saw him get a helium balloon from one and let it go. Then upset it was up on the ceiling. I was asked several times how old he was and if we paid to be in certain areas. I explained to them we did and he will not tolerate a bracelet so they gave us a sticker and he's 8! The young workers were shocked at his age as he's pretty small weighing only 40 pounds and even more shocked when he darted off from spot to spot. E maneuvered the small crowd pretty well and I prayed he would not run into anyone. (He has already suffered 2 minor concussions). I saw a mom that knew us from PPCD. I was so happy to see her 5"2 son playing dodgeball with all the other kids. She looked so "put together" and pretty too. I was in my workout clothes very un-put together as I followed E around the building. I was dressed for my day! Ha ha. It was so nice to see a friendly face and have a table to leave the bag at. A sweet little boy came up and said Hi Emerson. He told me he went to school with E. I tried to get E to say Hello, but he was too busy rejoicing in the surroundings. We were there for 1 hour and E did not stop moving. He paused as the man filling up the dots ice cream machine left it open for a moment, but I told him to move along!!! I was very proud of E. I was able to get him to the car without a tantrum. I started talking about leaving 15 min early and that helped. It gave him time to run around and do everything one more time. One time I did not do that and it was a disaster leaving. I had to run a few drive through errands and E ate his lunch in the car. When we arrived home, E wanted to go immediately outside to play with water and dirt. No rest for the weary me... Outside we went for over an hour. When we came in I was trying to work after he ate a snack, but that did not last long. He watered the carpet in several places and finally able to get him to the bathtub. I know it was early, but he was dirty. After another defiant dump of water on the carpet bath time was over! That's right, bathed and in pjs by 4:30... Time for dinner! E is not a sit still kinda guy so meals are a challenge. I can fight with him and set a timer or just let play and eat. Today was a play and eat dinner. I told him it was time to play with toys or we were getting rid of some since he never played with them. He chose hex bugs. There were no less than 10 that needed a new battery which is the size of a small watch battery. I keep them on hand, but still a pain to change. Especially 10!!! Overall, really a pretty good day, but I am exhausted. Time for bed!

Sunday, June 1, 2014

So that's what it's like...

I have been thinking more about E and his fabulous last day of school. There have been so many times I have seen other children doing things like sports or walking by their parent with out holding hands and wondered... What must that be like? I see Facebook posts about winning games and being most valuable player. Graduation from college and proud parent post about a child hitting a home run or scoring the winning point and wonder... What must that be like?
E has his own victories, and we celebrate then just like the parents of the child that scored the winning point in an important game, but Friday was extra special. E was able to participate in field day events with his general ed class. Just seeing him able to sit with the class and participate was am amazing sight! The sense of pride Geoff and I felt was over whelming. What a great day that was!!! Thank goodness for days like that. They make the difficult days easier to bare.

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!