Monday, August 12, 2013

Bumps in the road

The last year has been a year of progress and growth.  Austin has worked with three of the most AMAZING women.  I firmly believe God put these women in his life because he knew the special impact they would have on my little boy.  First is Julie, Austin's Occupational Therapist.  Not only has she helped him learn to sit, stand, walk, run & jump....she has been a wonderful friend to our family.  Austin loves her like she is part of his family.  The doorbell rings and he asks if it's Julie.  Frequently she makes it into his night time listing of names (his version of praying).  Next is Laurie, Austin's teacher at preschool.  She worked tirelessly to help him become more independent and learn and grow academically.  I think he has a crush on her too because he like to smile and get bashful when we talk about her.  Lastly, we have Sandra.  Sandra is a retired school teacher who works TRUE magic with Austin.  She has been able to teach him to sit and listen.  He can do puzzles, read books with her and so many other skills.  His cognitive ability has grown by leaps and bounds.  At just 2 years old he can identify all the letters of the alphabet (upper case and lower case) and identify colors.  He's now learning to count.  Austin loves to "play" with her but he really loves sneaking into her lap for her to read to him. 

With all this great news, you'd think we're on top of the world.  Well, we were until last Saturday.  Just over a week ago, our world was flipped upside down yet again. As we were entering SAM's, Austin had the first seizure of his life.  While it seemed like an eternity, it was just only about a 60-70 seconds in length.  It was the most frightening thing I'd ever seen.  Imagine your toddler not be able to communicate with you, twitch, go stiff as a board, and turn white before he passed out.  We rushed to the ER, and while waiting in the lobby, he had yet another seizure.  We were sent by ambulance to another hospital and he was admitted.  I won't go into the pure HELL he endured during that stay with the failed testing, but suffice it to say, if I ever see that tech again, she needs to run!

Our wonderful doctor called the new neurologist we're going to start seeing and had a phone consult with him to move our appointment up from October.  We were seen within the week at Cook's Children's Hospital in Fort Worth.  (Can I just say what an outstanding hospital this place is!!  It's really nice and I can see why TriCare didn't cover it without us begging for over a year.)  After examining Austin, he determined that something else is going wrong other than Cerebral Palsy.  He ordered tons of blood work, another EEG, and MRI's of his head, spine and lower back.  Dr. Malik also told us that he thinks the seizures aren't actually epilepsy but a symptom of a bigger issue.  He also requested a genetic test (SNP Micro Array chromosome test) to help him determine what is exactly wrong with Austin.  By looking at his muscle enzymes, amino acids, and chromosomes in combination with the EEG and MRI's, he can have a complete picture of the problem.  At this point, he is looking for a degenerative disorder. (This is heartbreaking to think of, so I won't.) The SNP Micro Array test is essential for helping the doctor determine what is wrong with Austin and how they can help him.  Unfortunately, this test is not covered by TriCare.  I'm not even sure there is a way to appeal it because it's just not covered for ANY person covered by active duty military insurance.

I'd love to be able to explain to TriCare how it feels to be a mother of a child with special needs who can't tell you where it hurts or exactly what is wrong.  I'd like for them to see my heart break each time he has a seizure and I know I can do nothing to help him or stop them from happening.  I'd like for them to see the fear he experiences when he has a focal seizure.  He's fully conscious but scared and disoriented with out being able to be comforted.   I'd like for TriCare to know that we travel 2+ hours EACH WAY for doctor's visits and have for over a year because there is something wrong with my child that can't be ignored or treated at our regular pediatrician's office.  I wish we could, but that isn't the case.  I'd love TriCare to spend a day in my shoes and then explain to me why $5,000 for this test is too much, and how it isn't something medically necessary.  You can't put a price tag on helping your child but that is exactly what we've been asked to do.  We either pay out of pocket for the test or my 2 year old goes without. 


Monday, June 4, 2012

The gift of time

It's truly amazing how much can change in such a short amount of time. 

Just a month ago my heart was broken after we learned Austin had Cerebral Palsy.  As we sat across from the neurologist and heard his words, all of my hopes and dreams for his life were instantly erased.  My hopes were replaced with fear, worry and doubt about his future.  Would he walk?  Would he talk?  Would he be able to make friends?  Would he date or ever find someone to date or marry.  Yes, I know it's a bit much to worry about something that won't happen for 4 years, 10 years, or even 20 years from now but I'm a worrier.  It's what I do.

The neurologist told us to "not have high expectations" about Austin.  He told us he'd be the kid in school that other kids didn't want to play with because he's different.  Austin would struggle to learn because his brain does function as it should.  He recommended we get all the help for Austin we could with PT, OT, and speech therapy then sent us on our way. 

The first week was a nightmare.  I spent most of the night laying awake worrying and most of the day crying.  It's pretty safe to say I was a hot mess.  Luckily I have a wonderful sister that loves my little man just as much as I do.  She dropped everything and came to the rescue.  Her boys lovingly sent their momma to come help me and their little cousin.  Having help was a life saver while I was mentally trying to get it together.  I know that there were many many prayers offered on my behalf and for my little family.  Those prayers continue to sustain me through this experience.

I constantly tease my sweet husband by telling him he's Pollyanna.  He always finds a bright side and is so stinking optimistic.  This is basically my opposite.  I'm a what if kind of person.  I worry!  Needless to say this personality difference can cause some conflicts between the two of us.  I'm constantly telling Austin he needs to be more realistic in his life views.  However, I was never more grateful for his optimistic perspective than the day my baby was diagnosed with CP. 

I needed someone to help me find reasons to hope for the future and have faith that the Lord was in control.   That is exactly what he helped me do.  As I shared all my worries about the uncertain future, he shared with me the certainty of what his life would be like.  Austin will be loved, he will be given every opportunity to learn and grown, he will make friends, and he will have a good life.  I knew that as his momma, the responsibility for helping Austin develop and learn would be mostly mine.  I'm home with him every day to work with him.  I needed to believe anything was possible so that I could help my baby reach for the stars. 

The teacher in me knows all too well about having low expectations for students.  I knew I had to expect he would learn to do all things other children do, it may just take him a bit more time.  I prayed for that belief and prayed that if it was the Lord's will, he'd help him to walk.  With those prayers and the help of Julie, Austin's devoted OT, my sweet boy learned to stand unassisted. 

Achieving this goal was the small step I needed to believe and the spring board to Austin developing more.  We began bribing Austin to stand each morning with his cream of wheat and with ice cream at night.  We would clap and cheer for him every time he'd fall and get back up.  My heart soared seeing him stand.  Everyone was elated with him standing on his own.  My sweet nephew Tyler wanted to know if Austin still had the "Terrible Palsy" because he'd learned to stand. 

Today,  Austin accomplished another goal.  He took steps unassisted!!  Luckily we were both home to witness such a HUGE milestone in his life.  We even managed to get him to do it again so I could video it.  Since this morning, he's walked a few more times and has taken up to seven steps in a row.  My heart is filled with joy and hope.  I know the Lord has helped Austin to develop and I know he has heard and answered the many many prayers offered.  To those who have sent messages of hope, love, and friendship and said prayers on our behalf, THANK YOU!  You'll never know how much it has meant to us.  Your kindness and love has been sustaining us.

Sunday, May 13, 2012

A Mountain to Climb

When Austin was nearly 4 months old, we noticed he didn't want to sit up.  We couldn't put him in a stroller or grocery cart or even in a high chair.  When we tried to get him to sit, he would push back as hard as he could to lay down.  When we told the doctor about our concerns she dismissed them until he was 6 months old and still not sitting up.  Since that time, Austin has been receiving an hour of occupational therapy each week.  At 11 months old he was finally able to sit up unassisted.  We were elated he'd reached his first goal but still noticed he wasn't where he should be developmentally.  We didn't feel we were getting an adequate amount of concern with his pediatrician regarding his delays.  In February we were finally approved to see an off base doctor.  On our first visit she shared with us the same concerns that we'd been having for months.  Although she didn't suspect anything was terribly wrong, she did want us to continue therapy and see a pediatric neurologist just to be safe.  In March we saw the neurologists.  He told us Austin had length discrepancies with his leg and foot on one side and he thought that was why he won't stand flat footed, or unassisted.  He expressed that because of this, he was having balance issues and would eventually learn to compensate and walk. He didn't expect anything else was going wrong but wanted to do an MRI and EEG of his brain just to make sure there wasn't an underlying seizure disorder causing these problems. 

Last week we went to get the test results and were given devastating news.  The MRI showed no brain damage or seizures but the EEG showed Austin's brain isn't functioning at the appropriate speed.  Normal brain function is 8-9 hertz, and Austin's functions at 6 hertz.  They diagnosed him with infantile cerebral palsy.  Although we will never really know the cause of this condition, the doctor believes at some time during his brain development before birth there was a loss of blood or oxygen.  His brain didn't form all of the connections needed to function appropriately, resulting in his condition.

So, what does this mean?  Honestly, we're not sure yet.  Learning to walk, talk, eat solid foods, and learn will all be a challenge for him.  We hope that he can accomplish all of these things, but just don't know what the future holds for him.  He is mobile enough that we are pretty certain he won't be in a wheelchair but don't know if he will need other assistance to walk.  We were given little hope in the doctors office but feel that is the worst case scenario and not necessarily what Austin's life has to be.  We plan to give him as much love and help as we possibly can to make sure he has every opportunity to learn and grow.  As we try to figure out the best ways to help him we ask for you to remember him and Austin & I in your prayers.   This diagnosis is extremely hard for us to process right now.  Hearing your little baby boy will struggle physically, mentally, & emotionally his entire life is heart breaking and overwhelming to say the least.  I look into my sweet little boy's eyes and am overwhelmed with a roller coaster of emotions.  Right now we're trying to focus on the hear and now and put off worrying about what the future may (or may not) bring.

The Lord preforms miracles every day and we know if it's His will, he can help Austin learn to walk and talk and function as other children.  Right now we are trying to talk comfort in the words of Elder Jeffrey R. Holland, "Some blessings come soon, some come late, and some don't come until heaven; but for those who embrace the gospel of Jesus Christ, they come."

Special Lessons

Wednesday, May 2, 2012

Austin & Zoe

After having spent the last 9 months imagining who our little Zoe, or as we call her Zo Zo, was going to look like we're finally beginning to see.  She has the curliest hair from her Nene Edie and I think she has her daddy's chin.  My mom constantly tells me how much she looks like Edie did as a baby.  Whenever I'm not looking, my mom has Zoe snuggled up in her arms telling her how much she looks like her baby.  Momma loves telling me how Zoe reminds her of being a young mother with Edie.  She also tries to talk me into letting her keep Zoe by saying I can always have another one and she can't.  LOL.  I told her they're entirely too hard to make so I'm just going to have to keep Zoe for myself.  I love how so many people love that little girl as much as Austin & I do.  Even her big brother Austin (Bubbie) is beginning to like her.

Austin likes to give kisses to everyone but lately he's been a bit stingy with his "sugar."  Frequently we ask for a night night sugar only to be given his hand in our faces rather than his lips.    Even Granny and Papaw have been low on Austin sugar.  The only person who seems to always her her kiss good night is Zoe.  He leans down and gently kisses her head each night before bed.  This is however, immediately followed with an attempt to poke her eye out or whack her in the head repeatedly.  He's learning to be gentle, but there is still a long way to go with that one.  I'm just grateful he loves her and is starting to not be so jealous of the attention we give her.  

Sunday, April 29, 2012

April 2012 photo updates!

Austin Nephi Jr. 14 months old

Zoe Kyle 1 month old

Zoe Kyle 2 weeks old

Monday, July 25, 2011

I'll be updating the blog soon with the events from the last few months soon.  Until then, enjoy this video of little Austin giggling as his daddy makes silly noises.