Friday, December 16, 2011

God's AMAZING plans

I was thinking about Christmas this year and how to make it more Christ focused for my kids.  I started thinking about the books we could read or ways we can give to people in need.  I love this time of year.  There are so many activities I want to do to share with them.  Then I started thinking about Jacob and how I can teach him.  He doesn't understand the word mommy.  What will he be capable of learning when he is older?  I started thinking about how difficult it may be to describe something to him that he cannot see.  I hear that autistic and asperghers kids take EVERYTHING very literal and therefore things like faith are hard to explain. 

Later I saw a video of a blind autistic child singing to a huge group at their state capital.  He was singing "Open the Eyes of My Heart Lord". I couldn't watch it without weeping and boy when I say weeping that is an understatement.  Having a special needs child has made me into such a sissy.  I can't even watch commercials without crying.  I wasn't sad, though, this time.   I wasn't thinking, "poor baby he is blind" or "that's so sad he is autistic".  All I could hear God telling me was that He has this AWESOMELY AMAZING plan for Jacob!  Its like I knew in that very instant that God can do whatever He wants through Jacob no matter what disability or struggle he may face.  God is being glorified so magnificently through this 10 year old who is blind and autistic singing to God to open the eyes of his heart, what can He do with my Jakey?!! I felt in my heart at that very moment that I better not let anything keep me from sharing God's word with my baby.  He may not understand the word mommy, but God can do anything.  So I am going to stay faithful to my Father and teach Jacob everything I can and sing to Him everyday about Jesus and I know with all of my heart that God will use my precious baby in some way to bring Him glory.  I have so much peace about that.  What a blessing God has given me this Christmas season.  He is continually blessing me and I am continually in awe and so very thankful. 

As far as what's going on with therapy and so forth we have stopped Jacob's ABA temporarily because we are out of funds for it.  I did start a job and will begin the therapy soon I hope, but it isn't enough for much.  Somehow I have to believe that one day children with no coverage for autism will be able to get help at an affordable cost.  I really see changes from ABA so I know it works, but we can't afford to spend every dime we make on therapy.  I have been considering getting the training and trying to do it myself.  I am just curious as to how to handle my other kids during that time.  I am currently still trying to teach Jacob simple sign language and working on all the basics with him.  He is an usually happy baby and that makes things so so much easier. 

 I was sent a poem by my mom today and it really touched me.  Thought I'd share...


I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved

Wednesday, December 7, 2011

Jacob's progress

Jacob has made some real progress lately and I wanted to share with everyone.  In the past few weeks he has learned how to clap.  This may sound simple to some, but its a huge accomplishment.  He is a year a half and has just now realized he can clap his OWN hands.  Woo hoo!  He is also making excellent eye contact and responding when we call his name.  He seems to be engaging with other kids to play.  I am so excited about how far he has come lately.  I can hardly wait to hear him say his first word.  He has babbled dadada, but does not relate it to his daddy yet.  That will be such an awesome day when he does!  He doesn't wave bye bye but it seems like he is trying. He is still stimming by hand flapping or spinning around in circles.  He can't eat real food yet, although he puts peas in his mouth and then spits them out, which is the first step!  He isn't communicating much although he has begun to shake his head "no" when he doesn't want to eat, which happens to be every single time I try to feed him.  We are working with an occupational therapist to help with the feeding.  I have started some simple sign language since he can use his hands now, but he hasn't caught on yet.  Hopefully we can get him communicating soon.  He has learned how to distinguish a train from a cup.  I don't know if he actually knows it is a train though.  We teach him by holding the train and the cup out and asking where the train is and putting it closer to him so he chooses it and then clap and praise him.  He loves the praising so much that eventually we can keep the cup and train side by side and ask where the train is and he chooses it.  Its so strange to be teaching something so simple, but it seems to be working.  We are now moving on to the next item.  Its one item at a time and we have to change the distractor. Meaning I can't use the train and a ball and say where is the ball because then he will choose the train because that's what made him receive praise.  That tells me he doesn't quite understand that the train is a train.  But with autism like his (where language is the biggest problem) this is the only way we can teach him....Or at the least the most successful way so far.  He has to memorize.  I think that's how therapists teach behavior issues with kids with autism and aspergers.  They role play and let the kids learn and memorize how to respond correctly or appropriately.  We also work on simple 3 piece puzzles where the pieces fit inside a wooden puzzle.  We take the pieces out and just give him just one piece.  We show him how to put it in and clap and praise him and then let him try again with the same piece.  I would say he puts it in maybe 20% of the time, but we are working on that.   Anyways I just wanted to give an update.  I have started watching a newborn to help with the costs of therapy so that we can get our own house so please say a prayer that I can balance all the responsibilities of Jacob, homeschool and Jordan, Tyler and the new baby.   I will post more updates as we go. 

Thursday, November 17, 2011

The final results from blood work

I got a call from the neurologist office yesterday telling me that all of Jacob's blood work came back normal.  Obviously, I was a little confused.  I asked why his arginine was low on the first test and they told me it could have been a lab error or something.  I wondered how they knew this test wasn't a lab error.  I made an appointment for Monday to hear the news in person and to make sure there is nothing else to check for. 

So this was good news, right?  No rare disease, no medication.....

After I hung up I could not stop crying.  I don't know how to explain the way that I feel.  Am I happy that my son doesn't have some rare disease?  Yes.  Of course I am.  But that was an explanation.  That was something that they could test, could treat, could fix.  What in the world do I do now?  I called my husband, hysterical and barely able to speak, but somehow managed to tell him the news.  He didn't understand.  He was so excited Jacob was ok.  He told me that I should be thankful.  I knew he was right, but I just got upset.  I want to FIX Jacob.  Honestly, the past couple of weeks have been the hardest in my entire life. I have been just in this daze, waiting to hear the outcome, waiting to hear what my son's life is going to be like.  To tell you the truth, this was the answer that scared me the most.  The nurse told me that most parents do get disappointed when there are no answers.  There is no treatment for autism.  There isn't even a test to test for autism.  Its a huge unknown.  I am just so sad for him and the life I wanted for him.  The life we all want for our children.... to be normal, healthy and happy.  Now the hope that I had in a medication to fix him right away is gone.  Now his life of therapy session after therapy session and never ending doctor appointments is now his reality.  I think if I am being honest with myself I must have been in denial that this was really going to be his life forever.  I just hoped his autism was a symptom of another problem which was going to be fixed.  After all, he has so many medical issues and he isn't growing which isn't typical of regular autism.  I watch those videos of kids with autism and their parents praying that they out-live their children because the government won't take care of them.  It's horrifying actually.  I watch how much of a hard time they have in school. with friends, with family and now I see our reality.  I'm so sad.  Once again, I feel like its all hit me for the first time. 

So where do I go from here?  That's what I have been thinking about.  How do I stop feeling so sad?  How do I manage to keep from crying every fifteen minutes?  I have to keep fighting for him.  I won't accept that there is no cure.  I won't stop searching for answers.  I won't stop praying all day every day for God to heal him.  I won't lose hope for him.  I won't stop being the best mom I can be and I have to stay strong for my children.  I have to teach my other children to be compassionate for the handicapped and helpless.  I have to somehow build in them the desire to help Jacob and others like Jacob so that if Cret and I aren't around, someone will always be here for him.  I have to help raise money for research.  I have to do all that I can to get my sweet baby the best therapy we can afford.  That's my plan.  Through this sadness I will let God's strength prevail and not let this keep me down.  He sees my tears right now and is holding me tightly through this and because of that I have hope. I can say to all you moms out there that even through this pain I KNOW that God has a wonderful plan for Jacob and for your child.  He has a plan for all of this that you and I can not even begin to understand and may not until we get to heaven, but because I trust God I am choosing to honor Him and thank him for Jacob's autism.  I am thankful for the lessons I am learning, the man that Jacob will become and I will remain hopeful that he will eventually be able to live a normal life, loving and fearing and honoring God.  (click to hear)

You must, You must think I'm strong
To give me what I'm going through
Well, forgive me Forgive me if I'm wrong

 But this looks like more than I can do
On my own
I know I'm not strong enough to be

everything that I'm supposed to be
I give up I'm not strong enough
 Hands of mercy won't you cover me
Lord right now I'm asking you to be
Strong enough Strong enough For the both of us
Well, maybe Maybe that's the point

 To reach the point of giving up
Cause when I'm finally Finally at rock bottom

Well, that's when I start looking up And reaching out
I know I'm not strong enough to be

Everything that I'm supposed to be
 I give up I'm not strong enough
Hands of mercy won't you cover me
Lord right now I'm asking you to be
 Strong enough Strong enough
Cause I'm broken Down to nothing

 But I'm still holding on to the one thing
You are God and you are strong When I am weak
I can do all things Through Christ who gives me strength

And I don't have to be Strong enough Strong enough
I can do all things Through Christ who gives me strength

 And I don't have to be Strong enough Strong enough
Oh, yeah
I know I'm not strong enough to be

 Everything that I'm supposed to be
 I give up I'm not strong enough
Hands of mercy won't you cover me
 Lord right now I'm asking you to be
Strong enough Strong enough Strong enough

Friday, October 14, 2011

A rare disease...

The neurologist called me after I blogged the other day to tell me that she had spoken with the genetic and metabolic specialist at Texas Children’s Hospital and that they suspect Jacob has a rare disease called creatine synthesis disorder AGAT.  His blood work showed that he was low in the amino acid arginine.  To date there have only been 7 reported occurrences of this disease in the world.  This disease can cause autism, self mutilation, mental retardation, severe language delays, epilepsy and heart failure.  It is treatable; however, the treatment has to be carefully monitored as it can cause renal failure.  We are going to Texas Children’s to do more testing to be sure that he has this disease.  From what I have researched, there is a chance that the treatment can improve Jacob’s intellectual delays.  The unfortunate thing is that while it may improve his autistic symptoms, it’s an extremely dangerous disease.  Please be in prayer for Jacob.  If you want more info I copied and pasted info below on the disease:

I got this information off the web page

Disease characteristics. The cerebral creatine deficiency syndromes (CCDS), inborn errors of creatine metabolism, include the two creatine biosynthesis disorders, guanidinoacetate methyltransferase (GAMT) deficiency and L-arginine:glycine amidinotransferase (AGAT or GATM) deficiency, and the creatine transporter (SLC6A8) deficiency. Intellectual disability and seizures are common to all three CCDS. The majority of individuals with GAMT deficiency have a behavior disorder that can include autistic behaviors and self-mutilation; a significant proportion have pyramidal/extrapyramidal findings. Onset is between ages three months and three years. Only seven individuals with AGAT deficiency have been reported. The phenotype of SLC6A8 deficiency in affected males ranges from mild intellectual disability and speech delay to severe intellectual disability, seizures, and behavior disorder; age at diagnosis ranges from two to 66 years. Females heterozygous for SLC6A8 deficiency may have learning and behavior problems.
Diagnosis/testing. Cerebral creatine deficiency in cranial MR spectroscopy (MRS) is the characteristic hallmark of all CCDS. Diagnosis of CCDS relies on: measurement of guanidinoacetate (GAA), creatine, and creatinine in urine and plasma; and molecular genetic testing of the three genes involved, GAMT, GATM, or SLC6A8. If molecular genetic test results are inconclusive, GAMT enzyme activity (in cultured fibroblast or lymphoblasts), GATM enzyme activity (in lymphoblasts), or creatine uptake in cultured fibroblasts can be assessed.
Management. Treatment of manifestations: GAMT deficiency and AGAT deficiency are treated with oral creatine monohydrate to increase cerebral creatine levels. Treatment of GAMT deficiency may also require supplementation of ornithine and dietary restriction of arginine. In males with SLC6A8 deficiency creatine supplementation alone does not improve clinical outcome and does not result in increased cerebral creatine levels; likewise, high-dose L-arginine and L-glycine supplementation did not improve clinical or biochemical outcome. One female with intractable epilepsy responded to high-dose L-arginine and L-glycine supplementation with cessation of seizures.
Prevention of primary manifestations: Whether early treatment prevents disease manifestations is unknown; however, newborn sibs of individuals with AGAT or GAMT deficiency seem to benefit from early treatment.
Surveillance: In those treated with creatine monohydrate, routine measurement of renal function to detect possible creatine-associated nephropathy is warranted.

AGAT (GATM) Deficiency

To date seven individuals from three families have been diagnosed with AGAT deficiency [Item et al 2001, Battini et al 2002, Battini et al 2006, Johnston et al 2005, Edvardson et al 2010].
In one extended Italian family, two sisters had global developmental delay; one had occasional fever-induced seizures [Item et al 2001]. Their younger sib, diagnosed at age three weeks and treated with creatine supplementation starting at age four months, was reported to have normal development at age 18 months [Battini et al 2006]. A second cousin of the three sibs who presented with global developmental delay was also affected [Battini et al 2002].
In the second family, a 14-month old American girl of Chinese descent presented with psychomotor delay, severe language impairment, failure to thrive, and autistic behavior [Johnston et al 2005].
In the third family, two siblings, age 21 years and 14 years, presented with mild intellectual disability, muscle weakness, and failure to thrive at age two years. Both had the novel features of proximal muscle weakness and fatigability [Edvardson et al 2010].

Wednesday, October 12, 2011

Still waiting....

I haven't heard anything about Jacob's latest blood tests yet.  The neurologist said that the tests take anywhere from 2-4 weeks.  Meanwhile, we are praying like crazy for good results.  We have moved in with my mom this week and are trying to get settled in.  We still have a lot of work to complete at our house before the closing Thursday, so we are busy busy this week. 

Jacob has started ABA therapy.  It is every day from 8:30-10:30.  So far, she has begun teaching him simple commands like sit down and put in.  He is obeying sit down about 50% of the time in a structured setting.  She is also working on him answering to his name (which is below 5%), matching, eye contact, etc.  Sometimes I hear him crying and crying in there and it takes a lot to not run in and "save" him, but I know this hard work will pay off.  They use an error proof system.  The therapist said that if you are teaching him the difference between a ball and a train and you ask him where the train is, and he grabs the ball, then he isn't learning as much.  Instead, we hold each one in a hand and when we ask him where is the train, we hold the train closer to him.  We only use a praising system when he gets the correct answer instead of saying no to the wrong answer.  This is because some children with disabilities don't understand no.  All they know is they are getting attention, so they may seek out the behavior or actions that caused the no.  ABA is extremely structured.  I have seen more results in a few weeks than I have in months with ECI.  However, I am still very thankful for ECI.  Partly, I feel that the positive results are from the structure and that they come for 2 hours every day.  Constant repetition is re-training his little brain.  I am excited to see what happens in the next few months.  She has also started introducing PECS.  She trained me on what to do with the pictures and I am so happy we may have a way to communicate soon. 

The other day I was eating at Schlotsky's in Kingwood with my 3 kids.  A man who works there, who has a disability, came up to us and pointed at Tyler and said, "He has a baby brother now".  Then he went on to say," I had a big brother and he was very nice to me.  I have a disability."  I told him that Jacob has a disability, too.  Then he said," My aid is about to go away and that is NOT RIGHT!"  I agreed.  It sounded as though he was just repeting what he has heard other people telling him, but I could tell he knew what that meant.  I left feeling so sad for him, but so thankful that he had a job and was able to communicate his feelings and totally OK with telling people about his disability.  When I left I decided that the next time I go there I am going to thank the manager for hiring him.  I feel overwhelmed about his situation.  What happens to people with disabilities, that the government doesn't consider major, when their parents can't care for them or when their aid wears out?  What will happen to my little guy if he is not fully able to care for himself and I am not around?  While I don't want to worry about it because that will do no good at all, I do have to consider it and his future.  For now, I feel like the Lord has put it on my heart to really pray for that man.  I ask that you pray for him too and for all the people out there that need aid and aren't receiving it.  Before Jacob was diagnosed I never thought twice about any of this stuff.  Now, I feel like God is putting me in the path of people that I can learn from.  I just don't know how or what I can do about it.  For now, I am just arming people with information.  That's all I can do with everything going on right now, but I hope that making people aware will help in some way. 

Praying for you moms out there always.

Wednesday, September 28, 2011

The results are in and scary!

I just got off the phone with Dr. Melissa Jones, Jacob's neurologist.  She said that Jacob's blood work came back abnormal.  She said he showed elevated levels of almost everything and that the blood work needed to be repeated while fasting.  I can't remember if we were fasting the last time so we go back in tomorrow to the blood work that we did a few weeks ago.  Hopefully, this time the blood draw will go as smoothly as last time.  Remember, this is the blood work where they have to put the needle in, take the tourniquet off, wait 2 minutes, then take blood.  I asked her what diseases these tests were for exactly.  I have been doing a lot of research coming up with a thousand things and I wanted to be more clear as to what we were looking for.  She said that it tests for hundreds of diseases.  Additionally, that most of them are treatable.  In my mind treatable is a good thing, so I said that's good news right.  She said,"No.  We do not want him to have one of these diseases.  I know it sounds good that they're treatable, but they bring another number of problems.  Some of the diseases are life threatening and others will be difficult for him."  We are heading back to Texas Children's tomorrow.  I am feeling pretty sick right now.  I'm scared.  I'm feeling really scared. 
God in Heaven,
Please please please do not let Jacob have a horrible disease.  Sometimes I think that autism is all that I can handle.  I just don't know how to handle something that may take his life or threaten his quality of life.  I know that you'll equip me with what I need, but I am feeling so desperate right now.  I know that you are God and you have a greater plan for my family than I can possibly understand.  I am hurting and I just need you.  If its in your will, I just ask that you heal Jacob or that these tests were somehow wrong, but if its not I trust you. Thank you for my children, my husband, and my loving friends and family.

This song came on the radio right after I hung up.  I have never cried so hard.  I know the Lord sees me and loves me.

I can count a million times
People asking me how I
Can praise You with all that I've gone through
The question just amazes me
Can circumstances possibly
Change who I forever am in You
Maybe since my life was changed
Long before these rainy days
It's never really ever crossed my mind
To turn my back on you, oh Lord
My only shelter from the storm
But instead I draw closer through these times
So I pray

Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings You glory
And I know there'll be days
When this life brings me pain
But if that's what it takes to praise You
Jesus, bring the rain

I am Yours regardless of
The dark clouds that may loom above
Because You are much greater than my pain
You who made a way for me
By suffering Your destiny
So tell me what's a little rain
So I pray

Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings You glory
And I know there'll be days
When this life brings me pain
But if that's what it takes to praise You
Jesus, bring the rain

Holy, holy, holy
Is the Lord God Almighty

Monday, September 26, 2011

Waiting on the test results

The nurse from the neurologist's office called me Thursday and said that half of the metabolic testing was in and that the doctor was back in town on Friday and hopefully could read the results and call me, but if not would call me Monday after she read them.  Still waiting on that call.  He could potentially have some life altering disease and they have the results and just haven't gotten around to reading them. AH!!! This is torture.  Deciding to pray instead of OCDing about it.  lol.

There are only a few new developments with Jacob.  He still is not answering to his name at all.  He is eating some more textures and making better eye contact, though.  He seems to be trying to play with people more and has developed quite the temper.  He also seems to be stimming a lot more.

Stimming is so strange to me.  Its hard to get used to seeing Jacob flapping or scratching his hands on everything, arching his back, pushing his head against things, biting me when he is excited or anxious, rolling his eyes into the back of his head and, most recently, standing on his head.  He does it all day long.  ECI says that he is doing it either because he likes the sensation of being upside down or because he can put a lot of pressure on his head that way.  The sensation helps him to organize himself.  The therapist suggest I find a hat or beanie that is really tight and see if that helps.  Therapists, parents, and doctors have mixed feelings about stimming.  Its publicly awkward, they need to do it to relax, yet if they do it too much they aren't learning anything and in classroom settings it can be very distracting to other children.  So how do you decide how much is too much and what to do to help them feel better? I noticed a child that was autistic in a classroom setting a while back.  He was having a hard time.  Its so disheartening.  He could't focus or follow directions, his classmates couldn't stop staring, and the teachers didn't have the resources to help him.  Do you tell the parents that their kids are too disruptive to participate?  Do you let the teachers get stressed out every week and keep the kids in the class?  My heart aches about it.  In fact, I haven't been able to stop thinking about it.  I think about my Jakey and all the other kids with autism and the difficulties they face and the hardships their parents go through trying to get them involved in community activities.  Autism effects 1 in 110 kids.  That is a huge number.  I wonder why there aren't more resources for these kids.  I have decided to pray specifically for areas of support within the local churches.  Two of the therapists that my son sees told me that 95% of their clients with special needs children do not attend church because churches do not offer classes for special needs kids.  Parents of kids with diabetes, hemophilia, mental retardation, autism, physical disabilities, etc need special childcare workers to watch their kids.  These parents need to have a church family, being loved on, and need to be hearing the Word.  These parents need support and the freedom to worship where they can be fully attentive and not fearing for their child's safety.  I know that every church wants to offer these services, but may not have the ability or funding or resources.  I am going to try and help where I can within our childhood ministries.  Won't you ask your preacher or childcare director to see if anything can be done to accommodate special needs families?  I asked the director of childhood ministries in our church about it and now she is trying to implement a coaching program.  This is a volunteer who can follow a child into their class and care for them as needed.  While this is great for kids with mild disabilities, its not enough for others.  Hopefully one day we can even have a classroom to accommodate the more severe special needs children.  What an awesome thing that would be to offer to local families.  If you know how to work with special needs kids I encourage you to volunteer at your church.  Imagine the life change you could make in the lives of those families for just an hour and half of service.  Our Jacob doesn't need this kind of care yet, I don't know if he ever will, but I am so thankful that there may be something in place if he does. 

We sold our house! Not only did we sell it, but we got full asking price.  That rarely happens.  We are just so amazed.  God has been so awesome in blessing us through all of this.  This whole autism situation has been so humbling to my husband and I.  First of all, Jacob's therapy costs much more than a house note so we had to put our house for sale and sell basically anything of value that we owned to pay for doctors bills and therapy.  We are totally OK with that, don't get me wrong.  God provided this house and all our stuff so if we can't have it anymore that's OK too.  Cret has a great job, so we aren't going hungry or anything, we just can't afford two house notes (house + therapy).   It is humbling though.  We are grown ups moving in with my mom.  Of course we want our own place with privacy.  Luckily, my parents are so excited and we have a lot to offer them help wise so I think it will be a great thing for everyone.  Most importantly we can get Jacob the help he needs until he doesn't need it anymore or until something else comes up as a way to provide help. 

By the way, our team is still accepting donations for the Autism Speaks Walk on October 22.  All of the money donated goes to autism speaks to fund research and help families in need.  The webisite you go to in order to donate in Jacob's name is We are very close to our $1,000 goal.  A huge thanks to all that attended my scentsy fundraiser in person or online.  That got us so close to meeting the goal!

I have to add a big enormous thank you.  We have recieved so much support in so many unexpected ways and we are beyond thankful and just in awe of how God has shown us His love through you all.  I don't really know what to say other than thank you.  All of the help and support and love has brought us so much joy and happiness and encouragement. 

This process is still tremendously difficult for me, I still go through days where I feel so alone and so helpless, but I know that the Lord is changing me so much.  I would have never thought twice about kids with special needs before.  In fact, it was hard for me to see past the day to day struggles of our family all together, much less any greater need.  True, I still let the difficulties of our situation get me down from time to time, but I'm much better at seeing God's hand at work now and just praying and letting it go.  Jacob is so wonderful and such a blessing.  I love him so much.  I just sit back and watch my children in amazement and filled with joy.  Jacob is a happy baby.  Jordan and Tyler are so happy. Autism isn't going to keep us down.  Finances aren't going to keep us down.  We trust in you, Lord. 

Thursday, September 15, 2011

Sign Language vs PECS

(This pic was at the allergist. He screamed and screamed.)
I recently took Jacob to the allergist to test him for food allergies.  I have heard that many people put their autistic children on the GFCF diet and see amazing results in their children's abilities, not like superhero stuff... LOL... Their kids just seem more "out of the fog" and start to speak or not have as many tantrums. I have also heard that many doctors think that the diet is not good and very rarely effective.  So I decided to be on the fence about it.  I decided to get Jacob tested for allergies to dairy and wheat before trying a difficult diet.  We went to an allergist in Humble who immediately asked me if Jacob had hydrocephalus.  I didn't realize his head was so big and obvious.  I guess because people don't usually see someones baby and tell them how big their head is.  So, as it turns out, he isn't allergic to any of the foods they tested for, including wheat and dairy.  I must say, Cret and I were disappointed.  Sounds strange, huh?  The idea of Jacob's symptoms getting better with just a diet, even a crazy hard diet, was exciting.  It was something to look forward to and hope for.  I left feeling sad.  The doctor called "the diet" crazy quack medicine and kind of laughed at me for thinking it could help.  He really hurt my feelings.  Don't think I'll go back to him.  Anyways, a therapist for Jacob asked me if I wanted Jacob's main form of communication to be sign language or pictures (PECS).  I was thinking, "I want it to be out loud", but I told her sign language.  She then went on to tell me the benefit to each and I thought it was interesting enough to share with all you moms considering both. 
Sign Language   
BENEFITS: Its usually easier to get them to speak from signing.  Its always used with words and its harder than talking, so sometimes they just want to go ahead and say the word. 
DRAWBACKS: Everyone who cares for the child needs to understand sign language and also have the same signs for each word.  Otherwise, the child is signing and not getting the right result and therefore it is not working for them causing more confusion and frustration.
BENEFITS: They can take their pictures with them everywhere, so everyone knows what they are saying.  It is very easy to learn and understand and no one needs training in it. 
DRAWBACKS:  You have to take pictures of everything and you can't lose or forget them.  Sometimes, with a bad therapist who isn't emphasizing the words and sounds with the pictures, the kid may not want to ever stop using the pictures and learn to talk.

After careful consideration, I changed my mind to PECS.  I want Jacob to easily learn a language to be able to communicate with me.  He doesn't even know how to clap, so I can't expect him to learn enough signs to be able to communicate with me.  Also, I have been trying simple signs for months now and he hasn't picked them up.  Additionally, I know it isn't practical to think that my mom, dad, brothers, sisters, babysitters, child care workers at church and other children will learn all the signs as well.  I don't want him to get frustrated, either.  My friend who has an autistic son used PECS and within a year he was speaking, so I feel confident in my decision. 

I was thinking the other day that at only 18 months Jordan, my daughter, was speaking in full sentences.  I mean like, "I poo pooed could you change my diaper?" I know that's not typical, but I would be so grateful to even get an intentional "momma" or "dadda" by age 2.  I can't even get Jacob to clap and it is so frustrating.  Tiny little babies learn to clap.  I know he wants to, he loves when I clap.  The way it was explained to me is that he sees my hands as objects and so he uses my hands to clap, not even realizing that his hands could be clapping.  I think that is so strange since I use his hands to clap.  Immediately after I clap his hands he either puts his hands down or just squeezes them.  So I'm still waiting patiently for a clap....Meanwhile, Tyler, my two year old won't stop talking.  He just talks and talks and talks and then talks, but as crazy as it makes me I always have to stop and thank God because, after all, he 

I think I wanna share this song I keep listening to over and over.  Man it just puts a huge smile on my face everyday.  Its been one crazy hectic day after another lately and I just really love it....Maybe it can make you smile...

Tuesday, September 13, 2011

Update on Jacob

Jacob has been pretty sick this past month.  I have been keeping a journal and in the past month he has had fever and been sick every day but 6.  He had bronchitis, then unexplained fevers, and now croup.  I asked the doctor why he is always sick, but she just said it's his immune system.  She also said that if he keeps having fevers without other symptoms we may have to look into it.  That is why it's so important to keep a medical journal.  Had I been keeping one for the past few months we would already be looking into it, because he always has unexplained fevers.  Tonight, he still has croup and just threw up all over his daddy.  I found it humorous, but Cret was pretty grossed out.  Poor guy.  Please say a prayer for little Jakey and for answers from the doctors.  Tomorrow, we go to the allergist to see if he is having any allergy problems.  Hopefully, I can get him to be still for the test. 

One of Jacob's therapists asked that we get him a chair for his therapy so they can work on getting him to sit and possibly obey simple commands like NO, GO GET, SIT, etc.  Sounds simple enough, right?  Not for a family with an autistic child.  I couldn't get him the typical child's chair because he arches his back and throws his head back and would get hurt in a regular chair.  So I started researching and finally decided to go to Toys R Us.  There I found 2 choices that were reasonably priced.  Both low to the ground with a back and arms and made of foam, but one covered with a soft plush and one with a spandex type material.  I must have stood there looking at the two of them for ten minutes.  See, Jacob stims on velvet material.  Stimming is repetitive body movement that self-stimulates like hand flapping, spinning, hitting their head on things.  Jacob is a hand flapper and he arches his back and throws his head backwards, even in a situation where it will hurt him.  He totally loves velvet so I was wondering if it would be good to get him the chair he loves or to get him the one he doesn't like.  I called both therapists that didn't answer and then my friend Tiffany who has an autistic child.  She told me that they stim to fill a need so she would get the one he likes even though we have both heard that they aren't learning when they are constantly stimming.  Then I called my sister who said, "Allison, what if they only had one?  You would just get that one."  Hahaha I really need to chill out.  IT IS JUST A CHAIR!  So I bought the plush one and the therapist said he did great today and only flapped his hands on it for a minute and then stopped.  I was thankful for that. 

We finally got to go to Texas Children's to get the blood work done last week!  The day before we went I had a friend/mentor from church over and after talking she asked me if there was anything specific we could pray for.  I asked her to pray that the nurse would be able to find a vein right away.  Throughout Jacobs life we have done numerous blood draws for surgeries, illnesses, thyroid tests, putting IV in, etc.  Never once have they found a vein on the first try.  Actually, they usually put the needle in then move it in and out and all around to try a vein, burst it, then move on to the next arm.  After his MRI he had 3 different bandages from terrible attempts.  Who knows how much they wiggled that needle in each arm before moving to his hand.  We use little heat pads to get the veins out and everything.  I don't know whats going on with his veins, but its just one more thing that just makes me crazy.  Its a horrible experience every time.  He is in major discomfort, screaming and crying and sometimes it makes me cry.  So with all that said she prayed with me.  She asked God to help the nurse be steady and find a vein on the first try.  She said God please show Allison that you are in control and let Allison just know and thank you right then and there when they do it.  Its funny, but I remember thinking about her faith in that moment.  She said that prayer with total assurance that God would follow through.  Well, we got into the room and the nurse said that we had to take one tube of blood, then take the tourniquet off, leaving the needle in the vein for two minutes, then draw the second tube of blood.  She said that the tourniquet can make a false positive.  I got very nervous for a second and told them that this would be difficult because he hates being strapped down and his veins are tiny, but for some reason I just chose to trust God in that moment instead of panicking.  They put heat pads on him because they couldn't feel a vein for a few minutes and then the nurse put the needle in and found a vein! There were 2 nurses with me in the room and we all stood there super silent as she got the first tube, then she took off the tourniquet and he started to freak out.  I began singing patty cake and the nurses chimed in with me.  We all sang to him for 2 minutes and then she got the second tube.  It was amazing!!! Immediately I shouted out, "PRAISE THE LORD! Thank you Jesus!"  One of the nurses said God is so good and the other agreed.  It was awesome.  God was in that room with us, watching my precious Jacob and telling me "Allison, I love you.  I'm in control.  Trust in me."  Later my friend told me, "Isn't it humbling to experience our Father's concern even in the little things?"  Its so true.  He really loves us and he really cares about us.  God is genuinely concerned with YOU.   I'm in total awe of how God has been showing me His love and grace and power lately. 

Tuesday, September 6, 2011

Joy and Peace

My heart is heavy tonight.  Jacob has been sick with off and on fevers for a month, spitting up, refusing to eat and having tantrums, and most recently hyperventilating at night.  Sometimes I feel like when I ask for prayer people must be thinking I am making this stuff up because it is just so much so often.  I am growing tired of sicknesses and fevers and doctor appointments and therapy sessions.  All of this has just begun and I wonder how am I going to make it through a life time of this?  Then I remember that I have Jesus to run to.  I open my Bible and refresh my mind.  In everything I read, God reveals something new that I can apply to my life and my situation.  I feel restored and ready to take on the next day.  Tonight while my husband was with friends I had to take my 3 kids to the grocery store.  It was getting pretty late...maybe 7:30 and they had all had their baths and were in their pjs and acting wild.  A woman with 2 little girls walked by me and asked, "How do you do it?  3 kids... How in the world do you do it?  Jesus Christ."  When I heard those words muttered in that way it hit me in my gut...hard.  Nothing makes me more upset than when I hear people say those words in that way.  So I just stood there and then managed to mutter "I love it".  She was standing there looking at me intent on hearing my answer and that's what I said..."I love it".... UGH!!! Now I can't stop thinking about that woman, desperate for answers.  What I should of said was, "Yes Jesus Christ is how I get through it.  He is my strength and He gives me every tool that I need to be a mother and a wife and a friend through His Word in the Bible and keeps me sane.  He has saved me from my despair and given me new life."  Even a fraction of that would have been better than what I said.  I don't know if I will see her again in the grocery store, but you can bet if I do I will tell her the TRUTH.  People constantly tell me that they don't know how I do it or that I am so strong, but I am nothing.  I am so weak. I lose it every single day and it is Christ and the Bible that brings me back to peace and joy.  I could not go through this daily pain and still have the happiness that I truly do have without having Jesus Christ in my heart.  He is who keeps me dancing every day with my children and laughing and singing and praising.  So I have to tell every mom out there that I know, I encourage you to turn to Jesus in this tremendously hard time.  He can be your refuge.  You can know a joy and peace that surpasses all understanding.  Jesus Christ was sent to die for all of us sinners, to reconcile us with God, and if we believe that He died for our sins and ask Jesus to live in our hearts, we can have eternal life with God in Heaven.  Isn't that awesome?  Not only can our sins be forgiven, but we can have eternal life with our heavenly father.  More so, God can give you a strength you never believed possible and a peace you could never have otherwise.  I encourage you to ask Jesus into your hearts if you haven't and if you to Him.  Also, don't be scared to run to fellow Christians for help.  A friend reminded me today that sometimes people just don't know how to help you.  We moms have to put our pride away and our "we can do it all" attitudes aside and just ask for help when we need it.  I know I need help sometimes.  Its very hard to ask to for it or to even know what to ask for, but I will be attempting this more I think.  Please share ideas with me if you have any. 

I read a beautiful verse in Colossians today...
"May you be strengthened with all power, according to his glorious might, for all endurance and patience with joy, giving thanks to the Father, who has qualified you to share in the inheritance of the saints in light.  He has delivered us from the domain of darkness and transferred us to the kingdom of his beloved Son, in whom we have redemption, the forgiveness of sins." Colossians 1:11-14

Thursday, September 1, 2011

Getting the blood work!!!

The nurse at our neurologist office called and said that the insurance company told her today that the blood work will be covered!!! The genetic testing, however, will not be.  I asked her exactly why we need these tests.  If you have a recent diagnosis you may be wondering as well and here is what they told me.  The blood work tests for metabolic diseases, which is basically the way your child uses their energy.  1 in 160 kids with "autism" actually have a metabolic disease that can be treated with medicines, supplements, or a special diet and it can cure or fix the autistic symptoms.  Thats why you hear of people that put their kids on the gfcf diet and their kids are cured or nearly cured.  Additionally, that's why some kids have no response.  So I am so excited to be getting this testing done.  We will be heading to TX Children's today or tomorrow for it.  The genetic testing tests for the things I have mentioned before such as mental retardation, fragile x, etc, but also 25% of autistic kids are missing a chromosome.  She told me that while this isn't life or death its good to know in regards to therapy and treatment.  There is no cure or even medication for this, but it lets the parents develop a better plan for their child.  I am assuming maybe an easier therapy plan or something.  I would really like to get that testing done one day, but for now we can't.  I believe the bloodwork was covered because of Jacobs macrocephalis, which is a medical condition that can be the cause of the metabolic disorder.  The tests will take 4 weeks for results, so please pray that Jacob may possibly only need a change of diet.  That is best case scenario.  I am preparing myself for both though.  I am just so happy we are getting this blood work done and so thankful that God provided a way!!

Wednesday, August 31, 2011

Our appointments today

I woke up this morning with a call from centralized showings saying that someone was requesting a showing today from 1-3pm.  While that was super great news it meant I had to get myself and my boys ready to head to the neurologist across town and clean my house all before 8am.  Nevertheless, I got it done and was out the door.  I called the office and told them I was probably running 20 minutes late and they said that was ok.  When I got there, they told me that I had gone to the wrong office.  They had said the Katy location, not the Memorial City location on the Katy Freeway.  Honestly I had no idea there was another office.  So they said the earliest appointment in Katy was 1:30 and I took it.  It was 10am.  I had to be seen today because we have a $500 deductable every month for our insurance and we had already met it so this visit would be covered since it was the last day of the month.  Now I had to find something to do between 10 and 1 so we headed to the mall to look around and then eat lunch.  The mall is not a happy place with a 1 and 2 year old, but we got through it.  We arrived at the Katy location by noon and I let the boys sleep until our appointment.  When they took us back to the room the nurse told me it was going to be $210 for the visit.  I told her that we had already met the deductable when we went to TX Childrens for the MRI.  She said that it takes 4-6 weeks for those payments to post to our insurance so they would have to collect the money from me and if in fact we had met our deductable they would reinburse us.  UGH.  Do I spend our grocery money?  Will we get the money back in time for when we need it?  Too many unknowns so I had to reschedule.  I asked if they could just call TX Childrens to confirm we had met the deductable, but they decided that wouldn't work.  Rescheduling means I have to pay another deductable next month.  It also means that I totally wasted my day.  I was trying so hard to fight back the tears as I left the office and once we got on the road they came pouring down.  I was crying and crying and crying and then I heard Tyler say, "Momma whats wrong?"  I tried to look back and smile at him with tears rolling down my face and gasping between breaths and I must have looked so crazy.  He just gave me a little smile and kept repeating, "Whats wrong?"  Man I hope this is one of those memories he won't remember when he is older.  Why couldn't I hold it together until I was alone?  Well, anyways I am so happy and thankful that church is tonight and I can go and hear from the Lord.  I am so thankful I will get to see some of those super sweet people that have been so kind and loving and encouraging to me.  One day at a time.  I am not going to worry about next month or even tomorrow. 

"Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God.  And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus." Philippians 4:6-7

Tuesday, August 30, 2011

MRI Results

We got the results for Jacobs MRI about a week ago.  I have been meaning to blog it, but honestly I have been so busy and so worn out emotionally.  The neurologist called me and told me that everything looked normal except that Jacob's brain was 2mm below his skull.  I don't know what that means, but she said they don't do anything about it until it is 5mm or more.  We have another neurologist appointment tomorrow so maybe she will explain then.  The insurance company hasn't decided if they will cover the blood tests or genetic tests yet so we are waiting for that.  Those tests will determine metabolic diseases, encephalitis, fragile x, ect.  The neurologist told me that its very normal for autistic children to have rapid head growth in the first year of life.  Since she told me that I have researched and read at least 10 journal articles about the positive correlation in head growth between 2 months of age and 12 months and the severity of their autism.  Obviously, this is not good news.  I don't know if I have ever cried so hard then when I was reading all of that.  His head went from the 25th percentile to the 98th in a few months.  I don't want him to be severely autistic.  I just want a normal healthy baby.  Meanwhile, all his ECI therapists and the consultants from Houston ABA and his doctors have been telling me that he needs to be in intensive therapy asap.  His brain is still very mallible until the age of 3 so intense therapy can actually make him almost mainstream by then.   So Cret has been feeling so stressed about money because we don't have the money for even a little bit of ABA therapy and I have just been so sad.  I feel like screaming "SOMEONE HELP MY BABY PLEASE!!!!" Why can't I get him the help he needs?  I feel so helpless.

Its been a while since I have blogged.  I have been having such a hard time lately with so many areas in my life.  First of all how do I call the people that I can talk to about this now that the "newly diagnosed' stage is over.  What do I say to them?  "Hi I'm still sad.  Jacob still has autism.  I think about it everyday and I can't really do anything?"  Additionally, some people aren't reacting the way I expected and aren't being supportive like I had wanted.  I started feeling resentful about it.  I started feeling so alone.  I was expecting people to react the way I would, or the way I thought was "right".  It was making me judgemental, resentful, and so sad.  Its funny how when I started going through all this I started thinking people should focus on me. I was hoping for all this extra support from people close to me, meanwhile not thinking about what they may be going through or dealing with.  I was just being selfish.  I have come to realize that I need to be thinking about the kind of person God wants me to be.  I need to let God use me in my relationships.  I am Gods child first, then a wife, then a mother, then a family member, ect.  I need to turn my focus back to Christ.  Moreso, I need to forgive.  I need to let it go.  I can see that God is trying to show me that HE is all I need.  He is my portion.  If I had thousands of people to turn to every single day with every issue right now would I be turning to my heavenly father?  Its funny how when we go through a crisis we become so selfish.  All of a sudden my prayers are filled with pleas instead of praises, my desires are for my husband and my family and my friends to fill my needs.  Its so hard, but I have to figure out a way to stay focused on my 1st priority...Jesus....not me, not Jacob.  So that's my prayer this week.  I am really feeling so weak and so tired and so sad. 

I need you, God.  I have never needed you like I need you now.  I feel so lost and so desperate.  My baby needs help and we can't help him.  Please help me to focus on You.  You are so awesome.  Blessed be Your name!

I read a book called Help For the Caregiver  by Michael R. Emlet and it was so awesome I just had to share the 3 amazing parts that touched me so deeply....
                       "The gospel is about renewing the true image of God through Jesus (Ephesians 4:24, Colossians 3:10).  This process is not derailed by illness and disabililty.  Instead, God uses these things to make us more like him.  God promises he will complete the work he began in each of us (Phil 1:6).  This means that God is doing his transforming work in the person you are caring for and also transforming you as you face the challenges of caregiving.  He is perfecting the character of Christ in both of you in the midst of your struggles."
                      "The concentration camp survivor Victor Frankl said,"When we are no longer able to change a situation, we are challenged to change ourselves."  You may not be able to change the chronic, life-altering aspects of your loved one's physical or mental struggle, but you can be sure that God is intent on transforming you more fully into the character of Christ as you care for your loved one."
                       "Providing holistic care to someone whose chronic illness you cannot fix is both difficult and redemptive at the same time.  Let Paul's words encourage you today:  "Therefore, my dear brothers, stand firm.  Let nothing move you.  Always give yourselves fully to the work of the Lord, because you know that your labor in the Lord is not in vain" (1 Corinthians 15:58).  God has entrusted you with a unique opportunity to  minister the gospel of Jesus Christ in both word and deed.  Although you may sometime feel that no one knows what you are going through, God sees you.  He knows all about your struggles and sacrifices and he is with you, ready to help you in your time of need."

God is with us.  I re-read this and I think of the special moms God has put in my life that are going through similar situations and I pray for peace and for God to show you and me that this is a ministry.  Our precious babies have these illnesses for a reason that we may never understand, but let us be strong today and every day in our faith and continue to praise God.  I know its hard.  Sometimes I feel like this is not real.  I seriously just wonder how can this be happening.  Surely Jacob is going to be fine or surely our house will magically sell tomorrow so I can get my precious baby help, but it doesn't and he's not and I need to be content.  I need to trust God.  Trust and faith.

Wednesday, August 17, 2011

Asking for Prayer

Today is a big, scary, important day.  Jacob is going in for his MRI.  His procedure is scheduled for 2:30 at Texas Children's Hospital.  I had to wake him up super early to eat because they told me he can't have any food or milk after 7am! He can have water until 11am.  The whole not eating thing makes me nervous because he gets so upset when he is hungry.  A friend of mine told me that the major problems that occur in surgery are usually due to people not following the eating and drinking instructions, so I am following them perfectly.  In addition, they are putting him to sleep during the MRI.  The procedure is 45 minutes and the nurse told me that the person doing it may take longer if needed or add dye to see anything more in depth.  They are looking for brain abnormalities, brain damage, mental retardation, gaps, and whatever else they can see.  Nevertheless, today I'm a mess.  I just wanted to ask all of you out there to pray for him.  Please pray specifically for a successful procedure and that whatever may be wrong...that they can see it with no problem.  This test could be a big deal and give lots of answers or it could just cause more questions.  I don't like the unknown.  I hate not being in control.  I hate not being able to make my precious baby well.  But I am going to choose to trust God because he IS in control.
  Thank you for being holy and just.  This situation with Jacob is so far out of my comfort zone.  I have no idea what to even think or do.  I am so thankful that this isn't unknown to you.  You know how many hairs Jacob has on his head and he is your child.  I am trusting you with him.  I am only borrowing Jakey from you and I pray that you give me the tools to care for him if its your will.  I pray for the doctors today and all the days of his life.  Please heal Jacob or give us peace about his condition.  I love you and thank you so much, every day, every second for this wonderful child.  He is fearfully and wonderfully made. 

As the women at Bible study reminded me last night...

I have all kind of crazy emotions right now.  So many I can't even describe, so I have to hold on tight to what I know is true and right. I have to hold on tight to my God and trust in His word and His promises.  He will never give me more than I can handle.

"I praise you, for I am fearfully and wonderfully made.  Wonderful are your works; my soul knows it very well." Psalm 139:14

Jacob is fearfully and wonderfully made.  God, knowing he was a special needs child, gave him specifically to me.  What an honor and blessing from God.  What a compliment that he trusts me with this precious child.  I will faithfully take care of him and lean on God when I have no idea what to do.  I hope you realize that too.  God gave you this amazing child to care for.  He knew this child needed extra care and extra attention and YOU were the mom he chose for the job.  What an honor.  Praying for the other moms having a hard time right now.

Sunday, August 14, 2011

I don't want to be my child's therapist all of the time

I’m constantly researching new ways to help Jacob learn.  I watch videos on therapies and read books. I have started to notice that I can’t even be in the same room with Jacob without evaluating him.  I watch how he looks at me or how he is reacting to his daddy or brother.  I see if certain sounds make him scared or if certain songs I sing make him look at me for longer than a second.  I went to a birthday party at Chuck E Cheese the other day and there was a 9 month old baby there and I was watching her clap her hands and smile at her mommy.  I found myself comparing every detail to Jakey.  I always find myself comparing.  In the nursery at church I watch all the younger babies looking at their mommies when they come pick them up.  It’s hard.  I want Jacob to look at me like that.  I want to say clap or patty cake and for him to just clap.  But that never happens.  The more and more I learn the more I try to be his therapist all day long.  It’s grueling and defeating.  I think I have come to the conclusion that I don’t want to be his therapist all day.  I want to work with him, of course, but I think I am going to have to draw the line some where or I am going to go nuts.  I can’t be therapist and mommy.  I have to learn to stop over thinking, over evaluating, over working him and sometimes just be loving mommy, but even saying that I feel like if I’m not working at it every minute with him then I am letting him down.  They say that therapists work through play, but as a mom I know it’s not entirely so.  The way I play with my kids isn’t with constant reinforcement and constant repetition, its just being silly and loving and pretending.  So where do I draw the line?  When do I turn therapist off and mommy on?  That’s my question.  What do you do moms out there?  How do you ever stop thinking about it for even a minute?  I just wonder when and how this will get emotionally easier.  Every song at church makes me cry, every commercial with “normal” kids makes me cry, and every time I see a baby younger than Jacob and meeting milestones I think of Jacob and just feel so sad.  Today in church we studied Psalm 42 and that during every tragedy God is with you, and that God either allowed it to happen or caused it to happen for reasons that most of us could never understand.  Additionally, God loves us.  God is not malicious.  He has a purpose for all of this.  I get that.  Even before I got Jacob’s diagnosis I knew that God would do what he wanted with our family and I trusted that.  I still trust God.  It gave me reassurance to know that other followers of Christ can be hurting and sad and still love God and trust God.  I think that’s what I was feeling guilty about for a while.  Does my sadness mean that I don’t trust God?  No.  God allows us to be sad or hurting.  The thing that is so awesome is that God is always with us during these tragedies.  He will never leave me.  I will continue to trust that He is doing what’s best even though I don’t understand it.  It gives me peace to know that God loves me and He is right here with me every step of the way.  Today I have to also include that while playing patty cake for the bazillionth time Jacob actually kept his hands together when I let go after clapping them for him.  This was a huge step because usually he immediately pulls his hand apart like I was hurting him or something.  Additionally, he has found a new way to communicate with me.  When I swing him and I stop his swinging he kicks his legs at me to tell me to swing him more.  Its so cute.  He never looks at me or implies he wants anything except reaching for the bottle and finally he was trying to tell me something.  Very cool.  Baby steps....

Wednesday, August 10, 2011

Why bad things happen to good people and Jacob's new diagnosis

Jacob’s nurse called me yesterday and gave me some good/bad news.  After finally discovering the insurance would not pay for the medical testing needed our neurologist decided to dig deeper into Jacob’s medical records to see if there was any indication of a medical problem, not just psychological.  After all, the whole reason she wanted that testing done was not to re-diagnose autism, but to make sure he didn’t have an underlying medical issue causing autism.  After reviewing his rapid head growth and virtually no growth in his body weight and length she determined that he has macrocephaly.  The definition for this is “a congenital anomaly characterized by abnormal largeness of the head and brain in relation to the rest of the body, resulting in some degree of mental and growth retardation. The head is more than two standard deviations above the average circumference size for age, sex, race, and period of gestation, with excessively wide fontanels; the facial features are usually normal. The condition may be caused by some defect in formation during embryonic development, or it may be the result of progressive degeneration processes, such as Schilder's disease, Greenfield's disease, or congenital lipoidosis. In macrocephaly there is symmetric overgrowth at the head without increased intracranial pressure, as differentiated from hydrocephalus, in which the lateral, asymmetric growth of the head is caused by excessive accumulation of cerebrospinal fluid, usually under increased pressure. Specific diagnostic tests may be necessary to differentiate the two conditions. Treatment is primarily symptomatic, with nursing care concentrated specifically on helping parents learn to care for a brain-damaged child. Also called macrocephalia, megalocephaly. Compare microcephaly” (The Free Dictionary by Farlex) There are a lot of things that can cause this, mostly medical.  She told me that they have a copy of our insurance and that it should cover all the tests we need with this diagnosis and that our doctor had 2 other neurologists look over his records to ensure accuracy.  It indeed may be caused simply by autism and if this is the case we will still pay for therapies ourselves, but if it is a disease causing this and his autism there may be some form of medical treatment.  Right now the insurance is deciding still if they are even going to cover the testing.  This is so beyond my understanding.  I want to say, “Please just help my baby!”  I don’t really know where we go from here.  I am just praying and thanking God that we hopefully are getting somewhere.  If just these tests are covered that will help our family tremendously.  I want to thank everyone for their prayers.  The outpouring of love that my husband and I have been shown is just beyond imaginable.  God has revealed himself to me in so many ways lately and I am just in awe.  My precious baby is going to get the help he needs one way or another, I just know it.  I was talking to a friend the other day and she was so confused as to why bad things happen to good people.  I think that’s such a common question.  If we are following God and doing our best to honor Him why are these things happening?  Well, as far as what I have already witnessed, God is using my precious Jacob to move people.  God is using Jacob’s story to help other families realize that their kids may need help.  God is using Jacob’s illness in order to allow me to share my testimony.  God is using other people to show me Christ’s love.  God is using this pain to draw me and my family into his arms.  God is using this to increase our faith.  And God is ultimately using this illness to glorify Him.  If Jacob’s brain damage or autism or whatever it may be causes one person to come to Christ or renew their faith then I willingly accept the pain and work that comes along with it.  I wholeheartedly give Jacob to God.  Even saying this I am in tears because Jacob is my precious baby, but I asked God a while back when I felt myself becoming apathetic to do something to bring me closer to Him.  Never did I imagine it would be something like this, but it has.  It’s drawn me so much closer to Christ.  I am so thankful for it.  Through my pain I am going to praise God and trust that this is for His glory.  So if you are a Christ follower and you love and trust God and you are enduring something similar, I hope you find comfort in the fact that when you gave your life to Christ you gave your life for His glory so that ultimately His kingdom can grow.  God is using this to grow you, grow others, or his kingdom.  God never promised us a life without heartache and in fact Jesus tells us we will endure pain…John 16:33 “I have said these things to you, that in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world.” Isn’t that awesome! God has promised his followers everlasting life with Him in heaven.  “What no eye has seen, nor ear heard, nor the heart of man imagined, what God has prepared for those who love him.” 1Corinthians 2:9  I am praying for resolution, but willing to wait until God has used this for whatever reason He chooses, if it ever ends in this lifetime.  Please pray for strength.  I write these things and I am feeling encouraged and trusting in God and it seems as soon as I take another breath something has happened and getting me down.  I want to stay faithful even through my sorrow.  I love and appreciate everyone on board with us.  I know God can perform a miracle and heal Jakey and I hope that he chooses to.  Please say a prayer for my sweet little guy.