Friday, February 15, 2013

My Alex

So I finally Got time to sit down and write you Alex's story! All the kids are in bed and asleep and the house is clean, the clothes are out for school and the lunches are made. The life of a mom and now its my time.

My Pregnancy with my older Son Eli was a good one as first pregnancy goes. I was in a wheel chair the last month and the first month after giving birth due to Siatica. Everything else went fine and I have a smart sweet little boy.

My Pregnancy with Alex was even better accept for the first month due to morning sickness. He was Born on October 13, 2007 8 pounds 7 Oz. He was a big baby. After I took him home I noticed that his one arm was not moving as much as the other and it turns out he had Erbs Palsy. So I started to take him to Physical Therapy. He was getting better...

Jan 21st...Eli who was two was getting out of the bath and Alex was right beside me. Daddy was getting Eli out and all of the sudden I heard this scream from Alex and I looked down at him. His arms were up by his face and he started to cry. I had no idea what had happened because my eyes were on Eli getting out of the bath. I picked Alex up in my arms and he was fine. I did not think anything of it...

The next morning I nursed Alex lying down in my bed. All of the sudden he stopped nursing layed on his back and started pulsating his arms up by his face. I didn't know what was happening and then his eyes rolled to the back of his head and his mouth started to foam. I had never seen a seizure before so I didn't know that was happening. My head was racing and my heart was stopped (figure of speech). My Husband held Alex while I called the advice nurse and she said to take him to the E.R.

Jason, My husband stayed home with Eli while I took Alex to the E.R with my sister in law and her daughter. They ran all these tests and they all came back normal. The E.R doctor was telling me that sometimes babies have gas and it looks like a seizure. But I knew in my heart (mothers intuition and the physical facts I had seen in him) that something was wrong! I was frustrated with the doctor! As I nursed Alex, his I.V came out and they said not to worry you will be going home. We were waiting on a urine sample when it hit...


Alex started to stiffen his back, his eyes rolled back again, his arms started to pulsate, but this time so did his legs. He was having a grand Mal seizure (a full body seizure) ! My sister in law was holding him. I ran out of the room and screamed he is having another seizure! About 5 doctor's came out of the room and ran to Alex. My sister in law ran straight to the phone and called Jason,"Come now...he is having another seizure!" and she hung up. It takes 5 min to get from our house to the hospital with out traffic and by the time Jason got there. Alex was still calming down from his seizure. it took them a while to get the I.V that had come out just minutes before. They had to put it in his foot instead of his arm.

I can not tell you ... how that felt! The most horrible feeling in my life...helplessness. Seeing my child and not knowing what was going on. Holding back tears I held his hands and kept repeating "mommy is here, mommy is here, I love you , I love you, mommy is here!"
To this day 5 years later the Neurologist and the Doctors and the Geneticist still do not know what had happened and why. They have no idea what is going on with Alex. This is very frustrating for me as well as I am always on high alert when Alex gets sick... For I don't know what will happen.

He was put on Medicine which was supposed to help him from not having seizures. They must have not gotten the dosage correct because February 6 he had another small seizure. This time they just upped the medicine and he was fine. That was the last seizure he has had.

He caught the regular sicknesses but it would take him out for the count. Just a common cold would leave him with no energy at all. He caught RSV several time and we had to give him breathing treatments.

After that he seemed to be doing okay until summer hit. He started sleeping a lot. At first I didn't think anything of it. I though he might be getting sick because his energy level was so low. But then I noticed he was not nursing very well. He started to sleep more than being awake during the day. The doctor didn't really know what was going on.

The only thing I that came to my mind was Mono. Could it be Mono? That was was the sickness were people slept a lot but I thought it was only in teenagers and I heard it was a kissing sickness. So I thought maybe there is such a thing as baby mono. I asked the doctor to test for it and sure enough... Aug 8 he tested positive for Mono.

There was nothing I could do about that either. No medicine I could give him, He just had to ride it out. So difficult. I felt so many things. I am his mother. I was supposed to help him and protect him and I could'nt do anything. The only thing I could do was pray and know that things were out of my control. I knew God had things in control and that gave me some comfort! It didn't mean that it wasn't hard to deal with! There were many nights of tear, no sleep, frustration, fear, and lots of coffee dates with my friends and family who supported me through all of this!

Seemed like those 4 months lasted 4 years. Alex was finally having more awake hours and less sleeping. His energy started to come back. There were delays in his development of course. He was not doing anything for 4 months but sleeping so his muscles were not getting strong. The Seizures had harmed his brain.

Things were not over with my little boy. October 20 we found out that Alex had congenital cataracts. This meant cataracts that were forming while he was inside of me or right after he was born. We don't know but if we didn't act soon he would be blind from the cataracts. Now your eye have to be taught to see. So the urgency for surgery was there! From the time he was diagnosed up until his first surgery, his one eye was completely covered in gray. The cataracts were forming quite fast. From his first surgery to the end of the month his other eye was almost covered as well. So they removed the lenses in both eyes. He could get implants but we decided to wait till he could make the decision himself. Adding something is more evasive that taking something out.

Alex has had so many tests. He has had multiple MRI's. He has had EKG'S ECG, EMG, and many many blood draws for genetic testing. Some of his results came back with new mutations that have never been seen before by any doctor which could or could not explain what is going on with Alex. The doctors don't have enough cases to really know anything about it. He does have an innocent heart mummer, but that is nothing to worry about. It does not affect the make up of the heart!

AS of today, Alex is a happy smiling giggly boy with a big smile. (He is also on UTUBE under gigleboy Alex) He strives to be like everyone else and works really hard. He has speech therapy, Physical Therapy, Horse Therapy, and Occupational Therapy. He gets around in a wheel chair and he is working to walk with a reverse walker. He loves his horse therapy and it has helped strength his core muscles. He was diagnosed with Cerebral Palsy which is an umbrella term for spastic and low muscle tone and damage to the brain and the effects from it. With this Diagnoses he has been able to get all of these services!

We are currently at Shriner's waiting to be scheduled for hip surgery. Alex hips are "subluxed" which means they are almost coming out of socket. Looking at his x-rays it looks like his hip socked was not formed and his femur head has not formed properly. He will be having two surgeries on both hips. This is to help reshape everything so that it will stay in a socket and create a socket for the hips. The two surgery he will be having is a VDRO and a DEGA Surgery. This is a 6 hr surgery and he will be in the hospital for 4 days if all goes well. He will then have a Spica cast for at least a month and after that splits and lots and lots of therapy. This is not a surgery to help him walk. This is to help him from going through excruciating pain later. Mostly for pain management later on. This is the next hurdle that he will have to over come! We have lots of support and God is on our side and because of that we will overcome anything! Prayers are needed!

Thank you for taking the time to read about my Alex. He is a bundle of joy and I have been blessed by him in so many ways, sharing in his triumphs and crying in his sadness and laughing with his joy filled spirit.

Friday, February 1, 2013

Do you have a child with Special needs? Thing I feel you should know!

     Something has been on my mind for a long time now. I still don't know how to write it all down but I am going to try. So here it is.
     If you are a parent that found out you have a child with special needs, here is a bit of information that I have learned over the years that I would like to share with you.
     First I want to tell you that I understand the fear and the overwhelming amount of information that is being thrown at you. I also understand the flooded emotions that you must be feeling right now. Know you are not alone and that you have friend who are there to support you. I want you to know how special you are. For this child came into a family where you are the perfect parents to take care of them. There will be challenges, there will be fears, there will be overwhelming joys, and there will be times that you yourself will be tested beyond believe. A few tips to help you through some of the challenges! 
  • You are their voice! When it comes to Doctors, Therapist, Teachers, Family Member. Mama and Papa Bear hast to come out. I myself am not a confrontational person. I don't like to make waves. I don't like to be the loud parent that everyone talks about. But when it comes to my Child... it take every ounce of me to do so! 
  • You have the right to your child's medical records! Get a file folder and label files to keep things in order. One for IEP's, Dr's Appointment, Neurologist, geneticist, tests, file for all the Doctors your child has or had in the past. Even if you have to pay for them it is a good idea to always have these records
I am realizing how important that is at this time. My Alex is going to have hip surgery at a different Hospital. He has to have a pediatric doctor check him out as well as a Neurologist, and other people. They need the records from his last health insurance doctor. I had a lot of them already because I have been keeping all his records. I didn't have some of his EKG and MRI a notes. It took about a week and a half to get. They can't clear him for surgery until they get to take a look at it. If you have it already then there is not much waiting time. I learned that the hard way.

Doctors have a lot on their plate and to have all that information ahead of time speeds up the process as well as helps them out! They are not lazy! They just have more Patience than they should have. I know it is a lot. My Son has a big case full of information with his first 5 years of life.
  •    Take someone with you to your appointment If you can!  There is going to be a lot of information said at these appointment and it can be overwhelming. If you have someone there that could take notes of what the doctors says. An extra pair of ears as well as someone who can ask the doctors some questions that you may not think about at the time because you are so emotional drained and your mind is trying to make sense of it all.  If you can't have a person with you take a tape recorder. It may seem silly but it does help a lot to be able to go home and re-read notes or slowly hear what the doctor as said.
  • If you can get into a support group. There is just so much that your friends can help you and support you with. They are amazing and wonderful people and can support you only to a point. Find other people who are going through the same thing or similar as you. They may know information that could help you more than you know it.
  • Give your self a break! It is very important to take care of yourself as well. You will need those breaks away from the stress and the decisions you have to make. Go for coffee with a friend, a jog, go to the movies.  I myself love to craft... or should I say make cards for other people. In my last post, I don't have time for that but I know I need to do something for myself so. I am blogging and writing tutorials I found on line and it is fulfilling for me.
  • Most Important: Communicate with your significant other if you have one!! Its going to be tough if you have someone who has a hard time dealing with all of this. Keep each other informed if anything because it is both your child. Make the tough decisions together . Having a child with special needs can put a strain on a marriage. I know this because I am living through it. Everyone handle these situations differently and we need to respect that as well.

In my next post I will tell you Alex's Story. I hope that this helps anyone who is reading this. If it give you some help and some hope! You are Amazing people! With an Amazing journey a head of you! Your child was given to you for a reason! Know and believe that! You may not like the situation but the love you have for your child is just enough to help them through this journey called life! 

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