Tuesday, August 23, 2011

Today's Struggles

The day began with a lot of fussing, tantrums, and throwing after a difficult night.  Andrew's seizure medication will be increased tomorrow and I hope it makes a difference.  My other son, Matthew, came home from visiting with grandparents for a couple of days.  He was having a lot of difficulty with his behavior.  I had the 'priveledge' of taking both of them with me to open house at Matthew's school.  We were allowed to go early before everyone else to help with Matthew's anxiety over going back to school.  I was pleased with the impression that I received from his classroom teachers.  However, I was disappointed with the EC teacher.  I thought to myself, does she really enjoy teaching special needs children.  She made no effort to make Matthew feel comfortable with her at all.  After leaving her room, we went to his primary classroom.  He only wanted to hide behind me and would not even look at either of the teachers.  As I was holding Andrew (who was tired from no nap, a night of not much sleep, and tires easily from low muscle tone),who weighs 45lbs, Matthew proceeds to touch Andrew on the leg which sends him to a tantrum and I get whacked in the face.  Matthew proceeds to head butt me in the back while I'm trying to calm Andrew in my arms standing there in front of the teachers.  After getting through this, Matthew tells his teachers he doesn't like the classroom and that he's not ever coming back.  Then he tells them he is going to bring his handcuffs for them so he can take them to jail.  I think to myself, "Really, Matthew, do you have to always say exactly what you are thinking!"  There are some days I just want to put a sign on my back that says, "Excuse anything you might see or hear, it's just Autism!"

 After the difficult hour and a half visit at the school, the multiple tantrums, relentless behaviors, I felt I had nothing left by the time I got back home at about 4:30pm.  I kept it together for a little while longer.  I fed them supper, cleaned up the many messes that were continuously being made, dealing with more tantrums, more relentless behaviors, restraining Andrew to give him his medications and finally I couldn't take it anymore.  I had everyone in their beds by 8pm, even my 12yr old.

Andrew was in his bed screaming, but I had to get myself together.  I was sitting alone on the couch with tears coming down my face and wondered, "Can I really do this?"  I had no one to call on just to talk to and felt completely alone at the time.  I thought to myself, "I'm suppose to be stronger than this; Why am I so weak?"  Everyone tells me what a wonderful job I'm doing and I want to say, "You should see me at my low points, I'm really not doing as good of a job as it appears on the outside."  I'm very guilty of putting on a front to others.  Many ask, "How are you doing?"  I reply, "Pretty good, how about you?"  What I'm really saying is, "I don't want to burden you with my problems so it's just easier to say what most are expecting to hear."  There are a few close friends that I do reply with, "Well, some days are better than others; or We are taking it one moment at a time."  I don't want to be truthful and actually say, "Most days I'm just trying to survive, and then the other days I'm falling apart."  Even though I rely on my faith to get me through many struggles, I still reach low points and have many weaknesses.  Being a Christian doesn't mean that our struggles aren't difficult, it means we have hope.  If it wasn't for my faith, I think I would have lost it a long time ago. As I was writing this blog, Andrew experienced another seizure.  We will be increasing his medication tomorrow, please pray that it works for him so he (and his mommy) can get rest!

Monday, August 22, 2011

Little Blessings.....

As I'm sitting here at 4am with Andrew who had woke up at about 3am possibly due to a seizure, after only 3 hours of sleep,  I take the time to reflect over my weekend.  Saturday was a pretty hard day for Andrew, and the rest of the family as well.  He was upset on and off throughout the morning.  He could be settled down for brief periods of time.  Then the afternoon hit.  Well, it was a 2 hour tantrum that didn't stop.  We (my daughter, Emily and I) had tried everything.  We couldn't figure out what was bothering him so much.  It's very frustrating not to be able to understand what you're child either wants or needs.  I finally reached for a prescription medication that is for itching.  His eczema had really flared up and he still itched a lot periodically from his burn wounds.  This medication is actually an anti-anxiety medication, but works well for itching and can also act as an antihistamine.  So, I finally resorted to this after not knowing anything else to do for him.  After giving him the medication, 30 minutes later he was resting against my chest, in my bed, and sound asleep.  As I watched him look so peaceful, I thought to myself, "Thank you God for the wonders of modern day medicine."  During the time that Andrew was having his 2 hour episode, Matthew (my other son), came out of his room almost in tears was wanting to know what was wrong with Andrew.  He told me to make him stop as he sat on the couch with his blanket, hands over his ears, and shaking.  Matthew, we believe is high functioning Autistic, has many sensory issues.  We try to explain about his brother, but having special needs himself, he is unable to understand.  He cannot understand that Andrew is not doing these things to bother him.  He believes Andrew is getting upset a lot to bother just him.  I tell him, trust me it bothers all of us, but Andrew really can't help it.  After Andrew was asleep, and I left the room, Matthew asked, "Is he better now?"  I thought to myself maybe he does understand a little and how sweet it was of him to ask about his little brother, even though I'm sure it was because he was so glad not to be listening to him fussing, crying, kicking, etc.

After Andrew had been sleeping about an hour, I peeked in to check on him and witnessed him having one of his seizures.  I felt so guilty as a mother for not recognizing this sooner.  This had been going on for months.  After it was over, he sat up and was distraught. I gently leaned him back, rubbed him, and comforted him back to sleep while trying to reassure him it was okay.  I thank God for the blessing of being able to find out what had been keeping Andrew awake all this time.

Later that evening he woke up in a good mood.  He sat and looked at pictures on the computer.  He loves looking at family pictures.  Every time he sees me in a picture he says, "Ma.....Ma," very slowly and using all the muscles in his mouth to just form these simple words.  This makes my heart melt every time, as this is the only time I hear him call me mama.  Hey, I'll take anything I can get, even if it's only from a picture.  Thank you God for this wonderful blessing to hear those words.  I'm sure there are many mothers that may never get to hear those words, therefore I'm very grateful for these utterances he makes even if he doesn't directly call me that.  I long for the day to come that he does. 

Saturday night, a miracle occurred, Andrew slept all night long.  I found him on the couch, so I know he got up at least once, but he didn't even wake me up.  I forgot what it was like to actually get more than a couple hours of sleep.  My body must have been somewhat adjusted to the lack of sleep, because I woke up with a horrible headache.  I thought, I should feel great, but I didn't.  However, I was thankful for the blessing that my son had also had a restful night of sleep for the first time in many months.

On Sunday, he was very sleepy most of the day.  One of his medications comes in a patch and it is changed on Saturday mornings.  This usually makes him pretty sleepy on Sundays.  We went to homecoming at my home church and he slept on me the entire time.  I sat there thinking of all the little blessings I receive through Andrew on a daily basis, no matter how bad the day may have been.  Just like Saturday; it was a bad day most of the day, but by the end of the day I heard him say, "Ma....Ma."  That just made the day a wonderful day through that one small blessing.  It's these little blessings that get me through my days.  Andrew has taught us to delight in the simple things that most others take for granted.  Dear God, Thank you for giving us Andrew to teach us so much! 

Friday, August 19, 2011

Andrew's Story

Andrew was born 9/18/2007 weighing a healthy weight of 7lbs 14oz.  He was a beautiful baby boy.  Andrew was perfect in every way and was the completion of our family.  He has a brother, Matthew, and a sister, Emily.  We left the hospital with our 'healthy', precious little Andrew. 

By the time Andrew was two months old, he came down with a cold that he couldn't get rid of.  By the time Christmas came he had developed severe reflux and RSV.  He was hospitalized the day after Christmas.  Little did we know that our precious, healthy baby boy wasn't so healthy after all.  He continued during his first year with eczema, allergies, bronchial infections, ear infections, and tonsilitis.  He was diagnosed with hypotonia (low muscle tone) at his one year check-up.  Other delays were also noted at that time and we were referred for early childhood intervention services. 

 It became even more evident that there was more going on than we realized during the second year.  He had 2 more hospitalizations for pneumonia and a severe case of tonsilits.  He had other tonsilitis infections and 2 cases of the croup during that year as well.  Andrew's development seemed to be at a stand still.  His delays were more obvious and were significant in comparison to his peers. 

At his two-year check-up he was referred to a neurologist.  The neurologist suggested a MRI along with genetics testing.  The MRI came back normal, but the genetics did not.  We were not prepared for what the geneticist told us.  He told us that Andrew had a rare chromosome disorder.  They said in fact, we have never seen this before.  We were told that he has a deletion on chromosome 16 on the short arm of p at 13.3.  They continued to tell us that they don't know what kind of affect this is having on him or what to expect in the future.  Andrew is the only case with this particular deletion and phenotype that is known.  We left feeling more confused than when we had arrived.  

Over the next year his development remained significantly delayed with no gains in many areas.  His heel chords became tight and was fitted for AFO's (ankle-foot orthotics/braces).  He went through additional MRI's and many other tests.  Our happy little boy was becoming less happy and began experiencing more tantrums than he was happy.  His beautiful smile was being seen much less often.  He was displaying OCD behaviors as well.  Andrew has the communication level of a 12 month old.  My little boy that I bragged on to so many about how he was so easy was becoming very difficult to manage.  He had always slept so good and would even put himself to sleep was now having more and more difficulty with his sleep.  I took it upon myself to go back to his neurologist.  She diagnosed him with Autism and ordered a video EEG.  To my surprise, he had 5-6 seizures during his sleep and was waking him up.  They were lasting about a minute.  I felt horrible as a mother that my child had been having seizures all these months that he had not been sleeping.  There are many day to day struggles having an almost 4yr old who can't communicate and requires the daily living care of a 1yr old. 

Andrew's Diagnosis' thus far:

  • Rare chromosome disorder
  • Autism
  • Hypotonia (low muscle tone)
  • Epilepsy (seizure disorder)
  • Asthma
  • Allergies (environmental/food)
  • Reflux
  • Tightened Heel Chords
We are very proud to call Andrew our son and wouldn't trade him for anything.  He truly is a gift from God.  He has taught us so many things already.  We ask others to please keep him in your prayers!!  We are currently seeking services for him and pray that we are able to get him some help.  He is in desperate need of many therapy services that our insurance will not cover and we are trying every avenue to get him the help he needs to make a difference in his future.  I created this blog to show the rewards and the hardships of raising a child with so many special needs, to raise awareness to others as well as help those who may be in similar circumstances.  This blog will also show the reality of the situation and how it's affecting not only Andrew, but the entire family.  It helps to know that you're not the only one out there.  It is my faith in Christ that has brought me this far, and I know that is what will carry me through this difficult journey! 
I can do all things through Christ who strengthens me. Philippians 3:14