Tuesday morning photo shoot

I love how much Aiden loves his sissy. 

Weekend recap

Our weekend was very busy but very fun. Friday was valentines day and Aiden and Ava had a party at Ms. Kami's. 

On Saturday Aiden and Bryleigh went to the discovery gym and that night we went to a friends house. 

Sophie isn't in the picture she just wasn't feeling it!! 

Do you think Sophie and Bryleigh like Ava?! 

My princess looked so cute!!

On Sunday we took the older kiddos to Disney Live and out to dinner. How cute are these two. They get along so well! 

Ava had a daddy daughter day! He even had her in bed by the time we got home! 

Aiden's Story Part 2

Aiden's Story Part 2

After meeting with our wonderful Neuro-surgeon he decided that surgery wasn’t the right plan of action and he felt there was something more going on and he wanted to rule out other diagnosis’s before “cutting into” a toddler. He then referred us to a neurologist and orthopedic surgeon at Leatherman spine center for additional testing, who then referred us to a GI doctor and another surgeon (who would then perform a nerve conduction study).  Since April 2013 Aiden has been put to sleep four times for tests and MRI’s. We have been tested for everything you can imagine including genetic testing. He was referred to First steps to start therapy where he got Physical therapy 1x week and speech therapy 2x week.

We have been told so many different things that at this point we don’t know where we are. At one point we were told that they were 99% sure Aiden had muscular dystrophy (this would also cause severe constipation).  This was the most devastating news we had heard so far. While sitting in the doctor’s office and listening to them tell us what they believed and why they believed this I became completely numb. I didn’t know a lot about this diagnosis but what I did know wasn’t good. They told us not to go home and google but of course I did. I had myself thinking that my son would be in a wheel chair before the age of 11 and wouldn’t live past the age of 20 (because that is what the internet says). I cried more then I had ever cried in my life. I cried on the way to work, I cried on my way home, I cried myself to sleep, I cried when I woke up. I even cried to Aiden’s physical therapist (who also thought he had muscular dystrophy). I cried to my friends, my family and my husband daily. I still cry thinking about it. I started to question God and think "why me" or "what did I do wrong"? 

 

I felt like we lived at Kosiars. After weeks and a number of muscular tests (one where they shocked every nerve in his body and is very painful) it was determined that Aiden didn’t have muscular dystrophy after all. Although this was such a relief now we were back at square one. Asking the questions ,What is wrong with my son? Why isn’t he walking and talking? All they could tell me at this point is he has a developmental delay. Well duh! 

On July 12^th Aiden took his first steps. It was pure JOY! After all his hard work he was finally walking. He still wasn’t talking which had everyone still concerned. They increased his speech therapy and added occupational therapy and then told us that they believe he has childhood appraxia of speech and would be taking a different approach in working with him. Although he still isn’t saying much he is starting to babble and say sounds. He is now saying three-four words also.  This also causes him to get very frustrated and act out because cognitively he understands everything but he just isn’t able to communicate. Although this doesn’t explain why he is delayed in motor skills and motor planning it does give us some answers. They still believe he has tethered spinal cord but will not be having surgery until he is older if he needs it at all.  

We see our neurologist again in March and will find out the results of his genetic testing. We are praying for good news but also answers. It has been a long 10 months.

 

*I’m sure I am leaving some small details out as I was also pregnant with our second child during all of this. I am not writing this to ask for sympathy. I am simply writing this for my own reflection and self therapy. Writing it out helps me cope. I know there are a lot of people who are going through way worse things than I am or my child is and I am grateful that it isn’t worse however this is and has been very hard on my family. I am thankful every day for Aiden and he has taught me so much.  He is so smart and at the age of two can mostly communicate with sign language.  He is such a determined little boy. He may not be able to say things that other kids his age say and may never be able to but we will continue to push forward. I once asked my mom "What if he never talks" her response was "then we will need to learn sign language". And that is what we will do.

 

 

Aiden's Story Part 1

Aiden’s Story Part 1

 

This post is hard for me to write but I’m going to do it because I feel it will help me get things off my chest. Let me start off my saying that from early on I have known something wasn’t quite right with Aiden when it came to developmental milestones. At first I think we were in denial, part of it was because I kept bringing things up to my pediatrician and she just kept telling me that every kid develops at different stages and ages. So we ignored some of these red flags that now explain everything. It was very hard because I have friends with kids around the same age and they were able to do and say things Aiden just wasn’t able to do. He has also had very bad constipation issues from day one. By the time Aiden was three months old we were having to use suppositories at least once a week and giving him prune juice daily to help him have a bowel movement. All they kept telling us it to use more suppositories, sometimes twice a day.

 

In April of 2013 (Aiden was 15 months) we took Aiden to the emergency room because he was uncontrollably crying. We had no idea what was wrong but I knew this wasn’t my precious little baby. Aiden never cried unless something was wrong. He would pull his legs up like he was in pain. The first thing I thought was he may be swallowed an object and he wasn’t able to pass it or even appendicitis. When we got to the hospital the pediatrician ordered an x-ray. About 30 min later they asked my husband and I to come look at the x-ray. It showed that Aiden was so “clogged” up with bowel that she was unable to see anything else. The pediatrician informed us it was the worst she had ever seen in the many years she had been practicing. She also saw what they believed to be appendicitis and we would need to be admitted to Kosiars downtown immediately. When we arrived downtown we met with a group of doctors and residents to determine the approach they were going to take. They had to get him cleaned out before they were able to determine if something else was going on like appendicitis and if surgery was going to be needed. At this point they inserted a tube down his throat and started golightly laxative that would end up taking several days to get him completely cleared. After 6 days in the hospital, many x-rays, MRI and a barium enema they diagnosed him with tethered spinal cord. Let me add that at 15 months Aiden as not walking or “talking” either so this had them concerned. They explained to me that he would need to meet with a neuro-surgeon to discuss plan of action and would more than likely need spinal surgery. This scared me to death. Operating on someone’s spine can be very dangerous (especially a 15 month old) and if something went wrong could end up being paralyzed. However, this was reassuring that just maybe one day my baby would walk and everything would be okay.

Let me add, I had an outpour of support from my family and friends. People I hadn’t talked to in years were emailing me telling me they were praying for us and letting me know success stories of people they knew who had gone through the same thing. It was such a wonderful (but still scary)feeling to know you aren’t alone!

 

To be continued

 

 

 

Wedding

So I started this blog to document my wedding and stopped blogging before I even got married so I wanted to post some pictures from ONE of the best days of my life. We had so much fun and I'm so blessed with so many friends and family who made the trip to the beach! It was a blast!! Wish we could all go back right about now! 

Warning: picture overload 

Welcome baskets for all the guests 

Bridal luncheon 

Happy valentines day!

Happy valentines day from these sweeties!!

Aiden wasn't cooperating!! What's new haha! 

Mommys mug Aiden made at Kamis! 

I'm back!

Well, I'm back!!

I have been absent for 2years sometime now! But here I am. I am ready to get back into the swing of things. I want to use this blog not only to document my kids life but also to use it as a form of therapy for myself.

Since I have been gone I had a little girl, Ava Grace! She is such a princess and I love dressing her up. Aiden is now 2 and is growing like a weed. He has had a lot go on in his two years of life (which I will talk more about later) but he is such a little sweetheart!! He is at such a fun age.

Here are some pictures of my sweet little family!!

 

 

So stay tuned! I will be back and it won't be two years later!!