8iRWeiXjcKj9kUz5Tebo4_k_FtY Life with Two Special Needs Children: October 2011

Friday, October 28, 2011

Sometimes It's Hard to Watch

Today the kids' had their Fall parties at school today.  I had planned on being there anyways, but Caleb's special ed teacher asked me the other day if I was planning on being there because the para that is usually with him had asked if she'd be able to leave a little early today.  The teacher told me that she had told her it depended on what my plans were.  I told her I was planning on being there, so I'd be with Caleb at the party.

I arrived at the school in plenty of time this year to get a good parking spot.  (Last year I was running late due to an appointment and had to park on the street and a bus hit my van as it tired to turn into the school.)

I went back and forth between the kids' classes helping them get their costumes on and then ended up in Caleb's class for the party.  The mom that planned the party had four games.  As I watched Caleb try the games, my heart just broke.  He just doesn't comprehend things and has so much difficulty when it comes to things like that. There were two games that involved straws - one where you had to blow through the straw and blow a plastic spider across a table and the other one where you had to suck in on the straw and carry a piece of paper from one desk to another desk and put it in a bucket (witch's cauldron).  At first Caleb refused to even put the straw in his mouth for the blowing game.  He would just blow with the straw out of his mouth. He eventually gave up.

The sucking game, he just could not get it.  I even told him it was like he was drinking through a straw, but he didn't get it.  The parent that was doing that game was really good and allowed Caleb to just pick up the paper in his hand and run it over to the cauldron.  For that I was very grateful!

It's just so hard to watch your little one struggle so much with things that come so easily to other kids.  Caleb can also be very competitive, so there was the potential for things going very badly, very quickly.  Thank you, Lord, that it went well!

All in all, Caleb did well at the party, for which I'm glad.  It really could have gone bad, especially when he couldn't have a second cookie!

Thank you, Lord, that it went well and we made it through the party without a meltdown!!!

Tuesday, October 25, 2011

Not Knowing

I think, when you put aside the agonizing mountains of paperwork and scrutiny (background checks, classes, home studies, fingerprints) and waiting one must go through to adopt a child, the hardest and most difficult part of adoption is the fact that you truly do not know a medical history for your child.  We are seeing that three times over with our children.

While we have an "open" adoption with Caleb's birthmother, we still do not truly know his biological parents' medical history.  While we're pretty sure we know who his birthfather is, we do not have any medical history from him as he was not involved in the adoption process.  In fact, he never responded to any communication from our attorney and the court had to terminate his paternal rights due to the lack of response.

We have called Caleb's birthmother and his maternal grandmother to try and get information, but we do not know how accurate that information is, especially in light of the fact that his birthmother has a cardiac problem that she adamantly denies is a cardiac problem.

When we saw the geneticist a week ago, he is quite concerned about Fetal Alcohol Syndrome for Caleb, even though Caleb does not have the facial features of it.  However, without having concrete proof that his birthmother drank, we will never know for sure, especially since she denies alcohol or drug use.

Caleb has had every genetics test performed that is available at this time and those tests have not revealed anything to us.  His geneticist is looking at some scans that were done more than a year ago and we are waiting to hear his thoughts on those.  I pray for some answers for Caleb and for us and am hoping that these scans will provide some of those answers, even if that means we need to start thinking about some VERY serious things.  If that is the answer that we receive, we will do what is best for Caleb and continue to probe for answers, whatever they might be.  If the doctor does not see anything that concerns him, we will just continue to do what we can to help Caleb, as we have been doing.  We know that whatever the answers are, God will be with us and continue to give us the strength to make it through each and every day as He has been.

Now, Cassidy!  We are taking her to the same neuropsychologist that Caleb saw almost two years ago to see if we can get some better answers on how to help best her.  I pray that we get some good results from this testing! We also have very limited information from Cassidy's birthmother and nothing from her birthfather.  Because of the nature of Cassidy's adoption through the state, it is "closed" until she reaches 18 and she decides she wants information.

Knowing the reason she was taken into state custody and things that her birthparents were involved in, I pray that our nurturing of her and God's grace will be enough to squash out what has the potential to be there from genetic nature.

Steven's adoption is the same as Cassidy.  We have very limited information from his birthmother and nothing from his birthfather.  Thankfully, Steven's developmental pediatrician is going to see about having some genetics testing done to see if it will give us any insight, but we know that nothing is 100%.

So we will continue to plug along each and every day with the beautiful children that God has blessed us with and do our best with the limited knowledge that we have!  Some days though I do wish we had a crystal ball to know exactly what was going on with our kiddos!

Monday, October 17, 2011

Geneticist Appointment

After receiving the Childhood Disintegrative Disorder diagnosis for Caleb in January of 2010, we were encouraged to investigate a "medical" cause to his regression.  After going home from that appointment with the 15 page Neuropsych evaluation, I forwarded it to Caleb's pediatrician.  She reviewed the genetics tests that Caleb's neurologist had already had done when he was in the hospital the previous October and called and talked to the developmental pediatrician in town.  She wanted to see us and talk about where to go next.  After waiting for four months (which is a VERY short wait to get in to see this doctor!), she ordered some more tests. When those tests came back normal, we were then referred to a genetics counselor and had a consult with a Geneticist via video conference, which happened November of 2010.  After that appointment he ordered some tests, including a skeleton scan.  Once those tests were done and came back all normal, more tests were ordered, which we did.

Well, today we went back to talk to the Geneticist by video conference.  We talked again about Caleb's biological parents and the limited amount of information that we have.  We were once again, just like we have been asked by every single professional that we have seen, as to whether or not we knew of any alcohol or drug abuse by Caleb's birthmother.  We told him what we had been told, "No."  However, he doesn't believe that to be true.   He is concerned about Fetal Alcohol Syndrome.  He said even though Caleb does not have the facial effects of Fetal Alcohol, Caleb's behavior seems to indicate that.  That doesn't completely explain all of the regression that Caleb has experienced; however, it could explain part of it.

We then talked about the MRI that Caleb had in August of 2010.  This MRI was after a SPECT scan that he had performed a couple of weeks prior to the MRI.  The results of that SPECT scan, from what we were told, showed possible hydrocephalus and that a MRI was needed to confirm.  However, we learned today that the SPECT scan showed atrophy and hydrocephalus.  We were told that the MRI was normal.  Dr. Shaeffer wants to review the films from the MRI himself because he said it's very illogical to have a SPECT scan and a MRI be so different.  The genetics counselor will be getting those scans and sending them to him for review.  He hopes that she will be able to get them to him by the end of this week, so that we would have some sort of answers by the middle of next week.

The doctor told us that depending on what he sees on these scans will determine whether or not we need to dig any deeper medically to figure out a cause.  If he sees something that concerns him on these scans, we will then need to discuss digging further into possible neurodegenerative diseases.  If he doesn't see anything, it may be that no one will be able to tell us exactly what is causing Caleb's regression in skills.  We were told in January of 2010 that that may be the case, but I was hoping and praying (and still am hoping and praying) we could find something to help Caleb!

No matter what the end results are, Tony and I know that God is in control and that He chose us to be Caleb's parents.  I am very thankful to be Caleb's mom.  I will fight and advocate for him as long as necessary!

Wednesday, October 12, 2011

Developmental Pediatrician Appointment

So last Thursday I took Steven to his developmental pediatrician appointment.  We're always there about two hours and this appointment was no exception.  First we met with a PT from the hospital that does some OT/PT evals for the doctor before we see her.  Then we waited for her to come in.

The doctor came in and saw Steven walking around.  She was THRILLED!  We discussed what he was doing, what he wasn't doing, the fact that the adoption is final and that we started weekly speech therapy at the hospital since we have not had consistent speech services with our early childhood provider for about 30 minutes.  I gave her a copy of the speech evaluation so that she would have that as well.  Since we do not have a lot of information regarding Steven's birthparents, she's going to request pre-authorization from our insurance to do some genetics testing, hoping that it might provide us some insight into things that could potentially come up in the future regarding Steven.  (Our insurance is absolutely going to love us!  NOT!!!!!!  Especially seeing as how they have gotten a bill for almost $10,000 in genetics testing for Caleb and that was just one round of two that Caleb has gone through this year!)

She then did the physical exam and didn't feel the high muscle tone that she has felt in the past.  So once again she is not ready to give a cerebral palsy diagnosis for him.  She did tell me that it does not mean that it might not be a possibility in the future if things should change.

All in all, I left there feeling very good about the progress that Steven has made in the last six months since we saw her last.  We can continue doing what we're doing to help him and don't have to return to her for 9 months (or until we get notice that they insurance is going to approve the testing and we have to go into the office for blood work!

Thursday, October 6, 2011

So Thankful for the Medical Professionals in Our Life

This morning I had to take Steven to see his developmental pediatrician for a follow-up appointment.  I came away from that appointment this morning so thankful to God for the professionals that he has put in our lives.

You see, when your children have as many medical professionals handling their medical needs as our children do, there can be some not so nice doctors.  We've had a couple - two in particular come to mind (but I won't name names!!!)!  But for the most part, we have been very, VERY fortunate to have some wonderful doctors and therapists in our corner that have not made us feel like we are the problem and they want to do everything in their power to help and guide us along the way.  And that I can only attribute to God's grace He has showered upon our family!  Having a team of doctors that work with you makes things go so much more smoothly for all involved.  Yes, I may have to wait in the doctor's office for appointments, even after our scheduled appointment time, but I know that with all of our doctors, I will be given the same time and attention as other patients and their families.

Thank you, Lord, for providing the knowledge and the training to the professionals in our lives!  We are so blessed!

Saturday, October 1, 2011

October is Sensory Awareness Month

We first learned of Sensory Processing Disorder (or Sensory Integration Disorder) back when Caleb was four and he was evaluated by an occupational therapist and given that diagnosis.  Once we learned more about it, the more it made sense.

At the age of 2 Caleb was very light sensitive, he did not like baths, especially getting his hair washed, getting his hands dirty, the noise of the vacuum cleaner, the hair dryer, getting his nails clipped, getting his hair cut. He would also fall hard on the floor and run into walls constantly.

Now, that we understand what sensory processing disorder is, I knew exactly what was going on with Steven when he started banging his head on the floor or on his crib, banging his legs on the floor, the time that he gave himself a rug burn from the carpet and didn't even cry, and not to forget his oral texture aversion issues!

When Caleb was first demonstrating issues, the biggest issues was his sensitivity to sunlight.  We took him to the eye doctor and she could not even look in his eyes because he screamed so badly that she didn't want to traumatize him.  We were referred to a pediatric eye specialist, because we were told that he would sedate Caleb for the exam.  WRONG!!!!  It was the first time (and not the last) doctor's appointment that I left in tears.

This doctor did not have a sensitive side to him at all and he refused to sedate Caleb for an exam.  It took three of us to hold Caleb down and someone had to hold his eyes open.  Caleb screamed the entire time.  When I explained Caleb's diagnosis, I really think that he thought I was making things up!

Fortunately, there was nothing wrong with Caleb's eyes, it was just the sensory issues; however, that's very difficult sometimes to handle.  We tried sunglasses and hats, all to no avail.  Thankfully that sensitivity has diminished greatly.  However, there are numerous things that are still there and we are continuing to work on them, especially during his hippotherapy sessions!

Here is some great articles on exactly what Sensory Processing Disorder is.  If you have any concern about your child, please, please, PLEASE have a consult with an occupational therapist!!!  It can really help you and your child!

What is SPD?

The 8 Senses

Red Flags of Sensory Processing Disorder

Go to SPD Blogger Network to find much more information from parents about SPD.

And you can go to Sensory Processing Disorder Foundation  for much more information!