Friday, December 19, 2014

Happy 3rd Birthday my miracle boy!

  There were many days as you were fighting for your life I didn't think this day would come. This road has not been an easy one,. Your strength has fought many statistics and proven doctors wrong. Your smile allows me to see heaven and always be reminded of the TRUE miracle you are. When you throw your fits I remember you are strong willed,because thats how you fought for your life. I will always remember your first word because it was such a tasks for you to finally say it. I know this journey is not over with you and as you grow I continue to fight for you. 

 My precious Shane, I will not stop fighting for you because you didn't stop fighting when your mom wanted to continually hold you. Shane your mom loves you and I hope you will understand one day that the lord saved you and gave you life when he didn't have to. He has a plan for you and I hope you full fill every bit of it, whatever it may be! You are such a great big brother and I love seeing your personality develop and Change. You were truly a blessing for us. I love you! Mom

Saturday, November 22, 2014

Another day of motherhood

  You know when you have those weeks that nothing seems to go right or at least those couple days?Well that was my week this week.Of course we all have them and I honestly have had way worse happen in my life, but I think we are all allowed to have the woe me days. I think as a mother we have them often, but I try as hard as I can to not have them consume me. It also helps when you have nice people around you to help you. Huge Plus!

  My week started off with my husband waking me up Monday morning at 5:45am saying his car wouldn't start. Unless you have a newborn baby or are heading to work nobody should be up at this time. :)  I normally would of just said take the van we just wont go anywhere today which typically happens anyways. However that day Shane my son was getting evaluated by the school district to see if he could qualify for their Preschool. With his speech delay this would be of great importance and there is limited time since his 3 year old birthday is coming up. I also that night had a coupon class at 7pm in ogden which with my husbands work schedule the way it is and his commute he wouldn't be able to get home in time for me to use the car for that either. So I grumbled got out of bed and tried to see what was wrong with his car. It was turning on and lights were coming on but not starting officially. We tried jumping the battery, so on and so forth. Every option we tried. Also this was a VERY COLD MORNING I believe it  was around 12 degrees! BRRR that woke me up! The other option was I could take him to the train station, but that meant waking my beautifully sleeping children. Who would be very cranky if I did. Well we waited till more of a proper hour for my boys to wake up and took my husband to train station to head to work. 

  The rest of the day the boys were cranky. Shane did ok for his preschool testing but toward the end was not handling it well. Jeremy on the other hand threw a fit during a ton of the testing. We got home and my coupon class cancelled on me for a family emergency so once again i felt frustrated. Like I said though I have had way worse!

My week continued with the next day my 19 m old son   hitting his head on my open van door and needing to go get stitches....

  My son fought and fought during the whole stitches process. He even fought me putting the towel on his eyebrow to stop the bleeding.... He is tough though and we all made it through.... They were both rewarded with a token for the ball machine and they both came home with a bouncy ball.  We got home around 3 or so from doctor and I ordered pizza! I was exhausted! After I ordered pizza my sweet friend offered to bring me dinner after seeing on facebook how my day was. I told her that was very sweet and that I had just ordered pizza.  The thought alone helped make my day better though! Its amazing what simple acts of kindness can do! 

  So far the rest of my week had been normal and I hate to be so negative about being a mom because its a wonderful thing and the hugs, and snot kisses they give you make it all worth it! I know with two boys this wont be my last trip to the doctor for stitches but I can hope right? I also continue to amaze myself what I can handle by myself with two boys under 3, just 15 m apart.  This was definitely one for the books for sure! Oh and by the way my husbands battery was the issue to his car so that was very nice! Just the price of the battery was it and the time to take it out and in! The auto zone guy said that the battery was only about 50% charged and when he did the slow charging process it remained the same. So it was a bad battery and we got a discount on our new one because the old one ran out before its time!: )  I hope your week was better than mine and that you can find the positive in these hard things that happen in life like I TRY to do. Till next week and hope you have a  Happy Thanksgiving!


Monday, November 17, 2014

Sleep study/ speech update

Hello All,

It feel like it's been a while since I have seen you all or sent an update to my side. So here it is, This might get long and I apologize!

First I'll start with Shane, as most of you know he had a sleep study and the results of that showed that he has sleep apnea or breathing blockage at night so he is not getting the full breaths of air he should while sleeping. So we are going to be getting his tonsils/adenoids  out January 9th 2015, during this procedure the Ent will also inject a "anti wrinkle" type solution into his paralyzed vocal chord (only lasts 3 months) to help the vocal chord close  and open together with the other. This will hopefully prevent the non stop coughing after Shane drinks fluids. So this will be like a 3 m test to see if that helps. This will be an overnight stay at primary's he will be admitted for this so I'm  hoping it's just the one night.  As far as Shane's speech goes. In August he was testing at the comprehension of his age and verbally a 22 m old. He can put two words together now we are working at three words. When he turns three he will be "kicked" out of Early intervention program and won't have his group and speech sessions anymore. Shane was evaluated today for a preschool sponsored by school district, but he passed on "normal" range for his age so  he doesn't qualify for the ongoing education... This is good, I'm glad he is so smart but feel he is still not quite there yet. The school will talk to his current speech therapists and ask her opinion and they will officially get back to me. He might still qualify for speech help. We will see. Shane will also have his heart doctor appt before his tonsil removal I hope and we will see what his leaky valve is doing. Shane sweats very easily so that worries me. This time of year is always hard and brings back memories.

Jeremy is a normal happy kid talking a ton! I can't believe how fast he is growing he will be 20 m soon! Shane and Jeremy just love each other and play so well! They truly are best friends and everybody thinks they're twins! :)

Nathan is working overtime daily m-f now. so he is gone 5:50 am- 7:45pm. I continue to hold down the cox household and take care of our precious boys!  I'm still teaching coupon classes on the side it's not a money making venture, but it at least a gives me the time away I think a mothers need sometimes!  We look forward to seeing the cox/little family at thanksgiving! My family, I miss you and wish I could see you all more often! Nathan has some time off before Christmas so I think we will be having a stay cation at our home. :) love you all!!!

Emily and Nathan
Shane and Jeremy

Sent from my iPhone

Saturday, November 1, 2014

Power of Positive thinking

   So since today is the first day of November the month we celebrate Thanksgiving which is a holiday dedicated to being Thankful I had these thoughts come through my head about being thankful which is one of the ways of positive thinking. . The United states has claimed this day where most people get the day off work to celebrate with their families and remember what we are thankful for. That alone I think should show most the importance of being thankful or grateful in our lives.
  Through my trials and hardships in my life I try to be thankful and positive. I am part of a group called Intermountain Healing Hearts its a group that helps families with adults or children with Heart defects. This has been a great group to get support and opinions. Every year they have a moms night our or in this case a lunch. Where all the moms of heart children or who have heart defects can meet together mingle and have encouraging words. 

  This last May our speaker and musician was Hilary Weeks. I remember seeing her perform way back ,hen I attended a Especially for youth conference for my church. She has beautiful music but with her beautiful music she had a beautiful message to all us moms that have very hard days with
these children with sever disabilities.   She had heard someone mention that we think about 300 negative thoughts a day. So she wanted to test this out. She got a clicker and everytime she had a negative thought about anything she clicked.... After about seven days of this she noticed a change in her. She was depressed, moody, and overall negative. This counting of negative thoughts were taking over her life. She realized how awful it was to focus on the negative. So she came upon this website. These were people instead of clicking every time they had a negative thought they were clicking when something positive happens or have positive thoughts. Hilary started doing this and she was amazed at how her life started changing because she was focused on the positive! 

This is Hilary Weeks and I. 

  Thinking Positive is something I have tried hard to strive for and it can be in the very simple things and daily tasks we do. Im thankful I got some sleep last night, I'm thankful we have blankets for these chilly nights, I'm thankful for the heat I have because it keeps me warm. Whatever it is we need to try to think positively in all we do. Being negative brings everyone else around you negativity too. Try to surround yourself with positive things. Music, beauty, family, and friends. That will lift you up. I'm not perfect there has been plenty bad days where negativity takes over,but I just try to start fresh the next day. Since its the start of November think of one or two things a day that are positive or that you are grateful and thankful for. Write them down or post them on your Facebook. Get the negativity out of this world one positive click at a time!

Saturday, October 18, 2014

Holiday time is upon us

  I know I skipped my last week and I apologize. Had a busy week and the closer it gets to Thanksgiving and Christmas it will just get busier. Although my Halloween time is busy too! I have probably about 4 Halloween parties the next few weeks. Plus you of course want to hit up the pumpkin patch with the family. Time just goes by very quick.

   Although it's only Halloween season the stores already have Christmas out and the frenzy already starts in my mind. I think shopping for Christmas a little at a time each month is good for budget but I don't know about you but I usually end up giving it early cause I'm so stinking excited!!! So I try to take one holiday at a time! I have been getting irritated how holidays are getting pushed out and over run by others. I'll admit I like Black Friday sales,but you might as well call it black thanksgiving now because everything is on thanksgiving now.  I can see the pros to it but I also see the cons. Holidays to me are for being around family and spending time with each other.

   Retail and marketing ploys want you to think the best present will make "Johnny" happy and your relationship closer. As most of you know that's not how it works. Even though we all know this doesn't work this doesn't stop people from going over board. Or if the kids live with two different sets of parents they want to out do moms gift or dads gift. It's sad, I'll admit I love to see  my boys  excitement with new toys even if it happens to only be twice a year at their birthday then christmas,but I never feel like I go overboard or put my self in debt for it. They are almost 3 and 18 m anyways.They don't even know what's going on. Plus it seems like they enjoy playing with the boxes/ wrapping paper more then the gift itself. :) This is not an attack on any who splurge on Christmas every year I know there are some that save all year to give their kids every thing they want,but realistically I know most don't they just throw it on a credit card. To me the holidays should've more than the materialistic mumbo jumbo.

  Holiday's = traditions and building family memories and good times. When I look back on my child hood I never remember what gift I got year after the next,but the traditions we kept. Going to get the Christmas tree, driving around looking at Christmas lights, seeing Santa, seeing different cultures nativity's, eating Christmas Eve dinner,  acting out the nativity as it's being read from bible, sitting around the thanksgiving table and saying one thing we are grateful for, Christmas breakfast, caroling, giving to needy,  making cookies, listening to music  and decorating for the holidays!the list goes on and on. Oh how I love this season for that reason.

  On a personal note. As most know we were struck with finacial difficulties because of my first born son and his heart problems.Him being born in december and surgeries in january and march we were struck with 2 deductibles a life flight and other monthly doctors and prescription bills.  I was forced to stay home and take care of him because if I didn't he would get very ill and possible die. Then when I found out I was pregnant with my Surprise pregnancy when my first son was only 7 months old I was daunted once again. We are not the type to ask for help we were just living with in our means. My hubby was working as much overtime as he could and luckily we were able to live off of our tax return and pay bills it still was hard. The christmas of 2012,  was going to be very simple we bought shane I think one large toy and I knew grandparents would give him gifts so I wasn't worried because he would be just barely a year old. Although I knew coming up we would have more financial stresses buying another crib, double stroller since our boys would only be 15 m apart. My mother in law called us and said that she paid for us to get family pictures done, I thought this was odd concidering I was 7 months pregnant and wanted to do a family picture once the baby was born but I went with it and about an hour in to us taking great family pictures we got a knock on the door. Ill let the pictures explain the rest. It was all a ploy!:)

 We were chosen by aTHM remodeling company who one of Nathan's old co workers worked for and they do a sub for santa for a special family every year.
She knew we would never ask for help even though we needed it and they gave us all the things we could need for the upcoming baby and christmas for shane that year. We were truly humbled and blessed by everyone's donataions and sill to this day I feel like we didn't deserve it but I guess thats a normal reaction. I will never forget and will always remember this and give to others also in the future.
  Let's take a deep breathe this holiday season and spend it with our family and remember what the seasons are about and why they are celebrated!

Saturday, September 13, 2014

Being an advocate for your child is exhausting

Super Saturday this week has not been so super!

Today I'm discussing a challenge I have had this week. As all mothers know being a mother is wonderful but very challenging in so many ways! I'm the mother of 2 boys the "normal"child is my youngest and my first son as I mentioned before was born with many heart defects. Although his surgeries have "Fixed" his heart he has other issues as a result of two heart surgeries and other things that we go to doctors for.

One of the many these delays in my son Shane is  Torticolis ( a shortened neck muscle on one side of the neck that causes my son to tilt his head toward his left side) this is very minor and can be helped easily with physical therapy. Due to sitting in hospital beds in one position for quite a while and the way Shane was positioned in the womb as a baby he tilted his head often. We started physical therapy  when he was around 3 m old as nurses brought it to our attention in hospital. After quite a while of PT it would strength in and his head would go straight. Every time he would learn something new like walking though it would come back. Once again I take him to PT and it would go away.  We eventually got enrolled with early intervention(a school district/government program to help babies -3 yrs with special needs or delays) for Shane's speech delay and asked if we could get Shane looked out from a PT in the program. A PT came out and looked at Shane this was around April or so of this year and at this time Shane was only "tilting" when tired or really active. The PT said it wasn't sever enough to treat at that time.she also gave me some tips to help stretch that muscle a 2 1/2 year old way. Pt excercises are very easy when they are babies,but when they are bouncing 2 1/2 year olds it' gets difficult to stretch it the way you did when babies. I was appreciative of the tips and continued doing what I could to help my son. as time has gone on it has become worse than earlier in April. He tilts the majority of the time not just when he is tired.

  This is where advocating for my son comes to play... Since Shane tilt got worse I brought it up to his speech therapist again and she discussed it again with the PT. Without even coming and looking out him again the PT denies treatment and encourages us to see our pediatrician and discuss it with them. Well if I bring this to my pediatrician he will just refer me to PT.  Early intervention says that because   Shane tested at normal gross motor skills and the tilt doesn't affect his "well being" or affects his daily life then they can't treat him. Ok yes maybe this is true that he is a good natured kid and it may not affect his eating or drinking, but during his sleep study last week they said torticollis could affect why he is waking and gasping at night. In what world is walking around with a head tilt "normal"? I'm sorry I would probably have tons of  headaches and pains if I walk around like Shane does. Yes I could  take him to a PT through our insurance, but that will cost me money I don't have. That's why we have these great programs like early intervention isn't it? So kids don't suffer because of lack of money. I have wanted to cry and scream this week it's exhausting!

. I'm just a mom trying to get the best treatment for my son and it's frustrating when he gets denied because it's not "Sever" enough without even a glimpse in months! I don't know what my next step is.
I have been through way worse things with Shane and I hate to complain, but I'm just trying to do what a mom does for her child!

  This week I have learned that I will always have to probably fight for Shane his whole life or at least till he can in 17 years!:)  I fought for him as a baby too, but as he gets older and going to join the world soon in preschool and later on kindergarten he will need an advocate to help him with his delays. I keep praying for strength to get through. The Lord gave me Shane and has a plan for him or he would of already been gone from this earth and  joined his Heavenly Father. The Lord I know will give me guidance and help me lead his child that he so preciously in trusted me with his care for a reason.  Never give up the fight moms!:)