Tuesday, June 26, 2012

Back in the tenth percentile...

If you have a child who has struggles with weight, (not enough of it)  you know how depressing it is when you make leaps and bounds and then in a short time the child losses weight and they are back where they started.

Today, I noticed Matt has lost a lot of weight.  Clothes that used to fit are now too big on him.  The on call GI doctor told me to take him into the ER.  So we did, and they said the testing that needs to be done is too extensive for the ER and to bring it up with the metabolic doctor tomorrow and to follow up with GI.  They gave me a growth chart and it put Matt in the 50th percentile for height, and 10th percentile for weight.  How depressing.  We were so pleased with the progress he had made.

If you missed it before, tomorrow is the appt with the mito / metabolic doctor.  I am really worried about it being another dead end and not having anywhere to turn after.  I really hope that he figures out whatever is going on.

Monday, June 25, 2012

Blog URL change

I will be changing my blog address soon.  I am no longer the one fighting to be heard, it has become Matt's battle.  He has to fight to make progress.  He has to fight to get better.  I am not sure what the name will be. If you follow me then you will get the new address or you can wait till I post on your blogs.  I just really want a name change.

Saturday, June 23, 2012

The 50s

Update on Matt... today we worried about dehydration even more.  Matt did not pee for over 17 hours.  I debated on taking him the to ER.  I was able to get fluids down him so we stayed home.  (actually we went to a birthday party for my niece) I also found a way to help him drink formula, if I put it in a syringe first he will drink it.  I know this novelty will wear off but he drank 15 oz of formula today!  If he goes another 17 hours with out any output  I will take him into the ER.

I apologize the rest of this post  is another rant post.  What was wrong with the 50s?  Seriously!  I used to think the 50's was a pretty awesome time.  An era that would have been nice to live in.  At the moment I am thinking society as a whole was just insane!

At the party we went to tonight I realized my Grandma is taking my brother's side. When he told my friend the only thing wrong with my son is that he has me for a mother, he also said I have been waiting for test results forever, it doesn't take that long to get them.  I guess he doesn't realize I have received lots of test results and I have a lengthy list of illnesses that Matt does not have.  I have kept my grandmother in the loop about everything.  I have called her told her what test we were doing and I have called and told her the results.

One of the first things she asked me today, "have you gotten those test results back you have been waiting for"  UGH!!!!!!!!!!!  I know this is coming from my brother.  I told her yes, verified he does not have blah, blah, blah.  I then told her that the doctors are thinking he has an unknown metabolic disorder and we are going to see another metabolic specialist on Wednesday.  All of this I have told her before.  Then she proceeds to tell me that Matthew can't be getting enough vitamin D because he is so pale and I need to take him outside more.   I told her we do go outside some but I am very protective of his skin I use hats on him and sunscreen.  I am VERY proud to say he has never had a sunburn!!!! (we have had Sea World season passes since he was 6 months old, other years we used them a lot!) She told me I should not use sunscreen once in a while.

I also told her how the social security hearing went, I told her it was a much older doctor that testified and he thought Matt had an auto-immune disorder.  I know he believes since my mom had MS, that Matt has MS.  I then went onto tell my grandma that I believe Matt and my mom are linked, but I also don't really believe my mom had MS.  I told her that mom does not fit into MS profile, that symptoms almost always occur in adulthood, not childhood.  She was surprised by this.   REALLY??? surprised????  Your daughter was diagnosed with MS, you didn't stop and do any real research?

If you are not aware of my mom's past, my mom had her first symptoms in elementary school.  My grandparents struggled them off thinking she was trying to get out of doing things she didn't want to do.  In Jr High she had a major problem with her eyes, her vision went away for a while. I am not sure if it fully went away or partially.  They took my mom to the eye doctor and he pulled my grandmother aside and told her that with what my mom was experiencing she had a 50/50 shot of having MS.  My grandparents did nothing with this information.  They thought a 50% chance of not having it was pretty good odds.

My mom went through her high school years experiencing crazy symptoms and not knowing why.  She must have thought she was crazy!  In a high school play she was playing pooh and it was the one he gets stuck in Rabbit's hole.  When it was time for her to get pulled out, her leg stopped working and she knocked down the set.  She couldn't stand with her class for graduation, one of her teachers was kind enough to be back stage with her and bring a chair so she could stay seated until they called her name and then she could walk across the stage.  I can't imagine what it felt like to have so many weird things going on with my body and no one talking about it, or giving me answers or even seeking answers.

Finally when my mom was 18 her first year in college she met my dad and decided to get married.  My Grandparents sat her down and had the "plenty of fish in the ocean" speech and then told her that she might want to think about not getting married because there was a possibility  of her having MS.   My mom was the one to go to the library and do research with my dad about MS.   I really don't know if there was a time my Grandparents did this.

My parents lived in Oklahoma for years, as her disease progressed,  they decided to move back to Texas to be near family.  My dad became an over the road truck driver.  My grandmother was around a lot. She was my mom's main support.

Texas care is much different than Oklahoma.  In OK she would have flare ups, she would be in the hospital for a month being taught how to walk again.  In Texas they told her she would be in a wheelchair the rest of her life.  One PT came into the home to teach her how to make transfers, he had her starting to walk again and he was pulled out being told he was there to teach her how to make transfers only.  My mom was a very trustful person, she was not a good advocate for herself because she truly trusted God, but my grandma on the other hand will  fights for own self.  Why was my grandmother not on the phone talking to people, telling them what they were doing was not right, and getting things made right?  Why did she not have private PT come into help?

As my mom got worse my grandma was the biggest pusher in putting her in a nursing home.  My mom deteriorated so bad from this decision.  I was 18, the control I had in the situation was taken away.  Again, why was my grandma not there fighting for her?  I would do anything and everything for my son, I can't understand a mom who wouldn't do the same.

Tonight driving home with my dad I vented in a way I have never done with him before.  I kept apologizing but I had to get it out.  I don't blame him, he was over the road, they moved here to be closer to my mom's family because he had to make money for our family.  There weren't cell phones then, he couldn't be the one having this fight.

Talking tonight my father of course had the same excuse.. it was the times.  He said he never found out why I was in the hospital when I was three.  He says he was in the hospital almost a year.  No one talked about it, he doesn't know what was going on.  He says he has flashes back to the time, but no real memory of why.  We know he had epilepsy and he is allergic to horse serum that they gave him while being treated for whatever it was.  He  never found answers.

What was wrong with the 50s?  Why was this behavior okay?  I can't even wrap my brain around it and it frustrates me so much.  I hate that not only was it an unfair way to live, but it still effects me now.  I would do anything for some of my mom's blood.  I would love to have it tested.  I would love to have it compared to Matthews, I would love to know if they had any similarities that would give some explanation.  Shine some light one what is going on.

Update Swallowing Issue

Yesterday morning Matt woke up, after a short time he started coughing which lead to dry-heeving. We went downstairs in which he fell down a few steps so I held his hand so he wouldn't fall again. I got him some juice to drink, since we are not as worried about calories I am giving him juice since he seems to drink it better. (he is losing weight though).
It took him over twenty minutes to drink the first two ounces after every sip he would start coughing. Then all of the sudden he was able to drink again. Yesterday with just juice and no formula he drank 36 ounces! The highest it has been since this started.
Tonight is my nieces birthday party, it is an outdoor party, I am worried about Matt through it. It is at my brothers house. I only have one brother so he is the one from my previous post. My grandparents are in town so it is really hard not to go. Really not sure what to do.

Thursday, June 21, 2012

Social Security Hearing

Today was the hearing for Social Security.  We don't have a lawyer.  At one point we had one and she would never listen to me.  The only reason I signed the paperwork is I haven't mastered saying no yet.  Not only did she not listen she didn't stay on top of things.  I would get letters from social security saying I had 10 days to respond.  She would send me the same letter 2-3 weeks later. I am glad when she is no longer on the case.

The hearing is the first thing I haven't let myself worry about.  I knew that with this worrying and research wouldn't really change anything.  I truly left and leave it in God's hands.  My hands are full.  (I know I should give a lot more to him)

We got to the place about 45 minutes early.  We waited for a while, everyone was really nice to Matthew and my husband had two clients that worked there.   Others were looking as employees kept coming and talking to him like they were old friends. Someone came and got me to go over the medical records they had in the system.  They had sent me a cd but I never got the other part of the CD telling me it was encrypted and there was steps we had to do to un-encrypt it.  I gave them a few more pieces of paper we waited a few  more minutes until  it was time to see the judge.

The judge was overseeing from out of state so he was there via video.  The doctor who was called to the case was very old, I doubt he is still practicing. We walked in, Matt and I sat at the table, Matt got pretty loud, he didn't understand that the person on the TV talking was a real person we needed to listen to, he thought it was just TV.  So the judge dismissed him with in a minute or two.

Once Matt was gone the judge went over my rights and then the doctor started talking.  The doctor first asked me a question about why I started the school process but did not put Matthew in school.  I told him that Matt was having a major physical regression, it was a scary time, I didn't know what was going to happen and it didn't feel like it was the time to put him in school.

The doctor continued through the case, the words Munchhausen by proxy were used.  Saying that when Matt was discharged from therapy I went to another therapy company with lower standards to let him in and I was manipulating the system and some people were not happy about that.  (this was really hard to stay quiet through, if you don't already know what had happened I will go into detail below)

The doctor went on and for the most part he was on Matthew's side agreeing that Matthew was atypical and  there are real problems.

After the judge talked the doctor talked for a few minutes, he made a comment he agreed Matt qualified as disabled.  Then I chose  to say a few words on record.  I told him that Matt was released from therapy and I a month later I had him re-evaluated and the owner of the new company couldn't believe he had just been discharged.  He had an open bite which she couldn't even tell that he had teeth and he has a major tongue thrust.  

At this point the doctor chimed in about some malformation in Matt's chin I have never heard about and don't know anything about.

The doctor and the judge went back and forth over numbers he should qualify under.  They wished me luck. I told the doctor that we were seeing the doctor in Austin next week and he said he really doesn't think it is a metabolic issue, he believes it is an auto-immune disorder.  That was it, no questions, nothing.  Anyone could have been sitting in that chair.

I think it went well, they say you never know anything until you see it in writing so we are waiting.

The therapy thing....
UGH!!!!  Matt's first speech therapist was a nightmare that is still haunting me.  She was with Matt over  year.  At the time I really liked her as a person, I didn't care for her much as a therapist, but as a person I did like her, I didn't know any better at the time.  Anything Matt was going through she would underplay.  We had our first eval with the dev pedi, after the appt we talked about how it went.  I told her that she said it wasn't autism, Matt was a work in progress, and she saw ADHD in his future.  When I told the speech therapist this, she was dumbfounded.  She did not believe that ADHD was in his future and she believed I had been feeding the doctor hogwash.
I found out months later after this therapist and I had parted ways that she called the dev pedi and told her that I just had Matt all wrong and Matt was just fine.  The doctor took my side and said she saw some real worries like the fact he has no deep tendon reflexes.  I am sure this lady also called my son's pedi because at that same time he stopped trying to find out what was wrong with Matt and told me I needed to record everything like seizures.  (which I did start doing)
I can't stand this women in my past.  We are at a point now where everything is well documented, many professionals have seen for themselves the ups and downs with Matt.  There is no one in our life that still feels this way and there hasn't been for close to two years, I hate that today it was brought up.  It is really scary to hear and know in a court document your name with your child and Munchhausen by proxy.  Even though the case went well it was really hard not to defend myself.

Wednesday, June 20, 2012

Quick Review

This post is more just to have.  I will probably copy it over to my caring bridge site for a medical update.

Monday we went and picked up Matt's new braces.  We had to go buys shoes for them so we didn't get to test them out with the Orthotist.  That night we found out they were not fixing his gait.  There was some improvement, but not enough.
I called Matt's GI doctor and Pedi about the swallowing issues.
Tuesday the PT came and saw that they were not helping and that afternoon we went to get adjustments.  He said at the time they were a little loose but hoping it would be growing room. He took the braces in 1/8 of an inch.  It helped a lot, and fits much better in his shoes.
Matt is wearing his braces well.
We scheduled an appt to see his pediatrician on Wednesday to talk about the swallowing issues.
Today we woke up early and saw the neurologist.  Last visit he agreed with the referral for the Austin Metabolic/ Mito doctor so the visit was to mainly touch base and see if he would take over Matt's meds because his dev pedi is moving to Austin. We can still see her for major things but we don't want to drive to Austin just for med changes.
Dr T (neuro) reminded me that in cases like Matt a lot of the time there is no answer and there might never be a diagnosis.  He said that he knows I want a diagnosis to try to fix the problem but even with a dx there is a good chance here isn't a fix in situations like this. I told him I wanted a diagnosis so I could no what the future holds.  He thinks it might be better not to have a diagnosis so we can hope that he gets past this.
Even with a diagnosis, I would still hope for the best.
Before we went to see the Pedi I got a call from Matt's GI doctor.  We talked for about 10 minutes.  He thinks a swallow study needs to be done.  He told me to keep trying to give him liquids, not to worry about calories but try to keep him hydrated.  If Matt shows signs of dehydration to take him to the ER.  He is going on vacation until July 5th, so he said give him a call then and we will set up a swallow study.

Tuesday, June 12, 2012

I am sad, I am lonely.

In life I have always chosen to have a few really close friends and very few semi-freinds.  This has worked well for me until now.  My best friend is wonderful, she is amazing, but I know she is so tired of me talking about sad things.  She is in a wonderful place in her life, her marriage is good, they have a house they love, she has two beautiful daughters, they have money in the bank, she has a very happy life, when she would rather talk about crafting.   When I talk about my emotions, how sad I am, blogs I am reading of children dying, my fears for Matthew.  This week her daughter who is one month younger than Matt went to VBS for the first time, this is not a milestone that Matt is ready for yet.  It makes me sad to see her daughter at such a different point then Matt.

Another close friend started working again, and she works with my brother, who is also her friend.  My brother and her are always together.  Even when they are not working their families hang out together ALOT! When she is not working, hanging out with friends,  she is sleeping or spending time with her 5 children and husband.  She tries to be there for me but she is very busy.

The last friend I consider a close friend is my oldest friend, her life is always full of drama and she isn't a very good listener.  I love her but at the saddest moments she isn't the one I can turn to.

My husband is there but he is working all the time, and he is a man, he wants facts not feelings.  He is worried about Matt but in his own way.  He sees Matt less than 10 waking hours a week, (maybe more if we are away together)  he loves me and Matt, but he isn't the support I can really lean on.   He is stressed with trying to expand his business, pay all the bills, getting jobs, and keeping his employees working hard.  I appreciate my husband so much, I don't know where I would be with out him, I love the time we do get to spend together no matter how little and I appreciate more than anything that he has taken on the financial stress so I can be at home with Matt.  I just wish I had someone to talk to.

I am bored, I am a very social person, if I was a Sim, my social bar would be the most important, it needs to be met, but when I am stuck inside all the time my social isn't being met.  Matt is social too, I know he hates this.  It really sucks to be inside tucked away from people.  Everytime we venture outside for anything Matt gets such a horrible rash.  I know that being outside isn't a good option for us.

I am sad, yesterday was a hard day.  Matt is in PT, every month the PT supervisor has to come and see Matt for a mini-eval to see where he is at in his goals.  Last month when she came I was really annoyed by her, she is new to Matt it was her second visit.  Matt was doing well.  He was doing so well she told me that his next full re-eval isn't until August and she thought it might be better to just take a break until then because she didn't think he needed PT right now.  I told her my problem with that is Matt regresses in the summer and I didn't think it would be a good idea to take him out of therapy if he was going into a regression period.  I could tell she thought I was crazy but listened to me anyway and didn't push the issue.

Yesterday she came to visit, I didn't know she was coming when there was a knock at the door I assumed it was the normal PT.  From the second she saw Matt she could not believe the changes.  Just the way he was standing there told her so much.  He is so unstable, he is leaning in on the insides of his feet, he is gripping with his toes.  His muscles are not working together to hold him up properly.   She couldn't believe the drastic changes in him.   She was so worried about him she didn't even do most his testing because the strain it would cause on him.

Matt's hips have even changed, she thinks it is because his joints or his muscles are so loose that it is causing him to not be able to hold himself up very well.  She thinks maybe he is popping out his hips to maintain balance.  Her main goals for him right now are to try to keep up his strength so his muscles don't atrophy while we wait for this to pass.  She mentioned he doesn't regress like an autism regression he regresses like an MS regression.  With Autism regressions they loose all skills including movement planning, but with MS it is physical where he just can't do it.

It is sad for me to see the changes in him.  It was really hard to see a professional be sad for my son.  Usually I get shocked or numb.  She was genuinely sad for what Matt has lost this month.

This regression is by far the hardest for me emotionally.  Maybe because the last one lasted so long and was so bad.  I am not ready for that again.  Last Christmas it was so hard to buy presents for him.  It was hard to buy presents keeping his skills in mind not knowing how it was going to end.  I don't want to go back there, I don't want to have an unknown stopping point in how many skills he will loose.  I want it to stop now.

He is also having swallowing issues.  I don't know if it is a big deal or a phase.  On Sunday he choked while drinking 3-4 times.  He lost his breath and was coughing.  He has never had this happen before.  Once was even when I was giving him his meds.  Yesterday he didn't have any choking while drinking incidents, but he cut his liquid intake in half, and there were a few times he had a mini choke on his saliva.  I hate not knowing what is going on.  I wish someone could tell me not to worry about it, it will pass or tell me to pursue it because it is going to be a problem.

Monday, June 4, 2012

Othotist Visit Today

Today we saw the orthotist for Matt to get fitted for his orthotics.  He is getting high back SMOs with the orthotic going down to his toes.  A new addition will be padding at the toes to give him extra feed back.
There have been changes to Matt's feet this year and it bothers me.
He is very unstable on his feet, when he is walking he is grasping on with his toes to try to feel more stable. The added toe padding will give him feed back to help with it.
He is almost walking on his ankles, it is either the joints or the muscles but they are not holding his feet upright.
His gait is very off, he is so unstable.
The last two times Matt was fitted for SMO's the orthotist thought it would be his last or only pair, it didn't feel that way this time.  He said Matt needs to wear them all the time, I wasn't told that before, last time I think 8 hours a day was recommended.
On the plus side, I mentioned to the doctor my worry about Matt's skin in the heat, it has been so hot and Matt is having such bad rashes, he is ordering socks cooling socks with no seam.  He said if it causes problems still to change his socks after half the day, and if that doesn't help come see him and he will see what he can do.
The estimated time is 2-3 weeks.

As a separate note Matt is having major food aversions.  He isn't eating anything except for sweets, drinkable yogurt, cheese, and occasionally fruit.  He is still drinking most of his formulas.  Not sure if this is a phase or even what to do about it.  He is also being destructive with food and smearing it in the carpet, I am not sure if this is behavioral or out of frustration with not being able to eat.

Sunday, June 3, 2012

This Month is a Busy Month...

This month should go by pretty fast, we are going to be busy for a lot of it.  We of course have our normal therapy appts which is 6 appts every week.  2 PT, 2 OT, and 2 ST.
Tomorrow we are going to the orthotist to get Matt fitted for his braces.  When I checked on Monday they referral and script were not to them yet so hoping that gets cleared up Monday morning and we don't have to cancel.
Wednesday we see the new behavioral therapist.
Friday we see Matt's sleep doctor.  (he asked me to fill out a sleep calendar, it felt silly to do it after our last visit because things change so much with Matt it wouldn't be relative to Matt now, so I need to start it tonight so we do have it logged.
Next week will be a break in schedule, I have one appt for me and nothing other than therapy for Matt, maybe a behavioral therapy.
The third week of June will be busy again. That Wednesday we will see Matt's neurologist, since our developmental pedi is leaving the city we need him to take over Matt's meds.
That Thursday we have Matt's social security hearing, no clue what to expect.
Then Wednesday the next week on the 27th we finally have our appt in Austin with Dr. Gibson.
Lots to do this month, I do hope it goes fast.  I am ready to get past these summer months, I feel bad for feeling that way because summer is 6 months of the year here and rushing it feels like I am rushing time that I get with Matt, but when fall rolls around is such a wonderful time.  The weather cools down, we get to go to playgrounds, and Sea World, we start preparing for all the fun holidays... I love the fall and winter.

Saturday, June 2, 2012


by Russell Kelfer

Desperately, helplessly, longingly, I cried;
Quietly, patiently, lovingly, God replied.
I pled and I wept for a clue to my fate . . .
And the Master so gently said, "Wait." 

"Wait? you say wait?" my indignant reply.
"Lord, I need answers, I need to know why!
Is your hand shortened? Or have you not heard?
By faith I have asked, and I'm claiming your Word. 

"My future and all to which I relate
Hangs in the balance, and you tell me to wait?
I'm needing a 'yes', a go-ahead sign,
Or even a 'no' to which I can resign. 

"You promised, dear Lord, that if we believe,
We need but to ask, and we shall receive.
And Lord I've been asking, and this is my cry:
I'm weary of asking! I need a reply." 

Then quietly, softly, I learned of my fate,
As my Master replied again, "Wait."
So I slumped in my chair, defeated and taut,
And grumbled to God, "So, I'm waiting for what?" 

He seemed then to kneel, and His eyes met with mine . . .
and He tenderly said, "I could give you a sign.
I could shake the heavens and darken the sun.
I could raise the dead and cause mountains to run.

"I could give all you seek and pleased you would be.
You'd have what you want, but you wouldn't know Me.
You'd not know the depth of my love for each saint.
You'd not know the power that I give to the faint.

"You'd not learn to see through clouds of despair;
You'd not learn to trust just by knowing I'm there.
You'd not know the joy of resting in Me
When darkness and silence are all you can see.

"You'd never experience the fullness of love
When the peace of My spirit descends like a dove.
You would know that I give, and I save, for a start,
But you'd not know the depth of the beat of My heart.

"The glow of my comfort late into the night,
The faith that I give when you walk without sight.
The depth that's beyond getting just what you ask
From an infinite God who makes what you have last.

"You'd never know, should your pain quickly flee,
What it means that My grace is sufficient for thee.
Yes, your dearest dreams overnight would come true,
But, oh, the loss, if you missed what I'm doing in you.

"So, be silent, my child, and in time you will see
That the greatest of gifts is to truly know me.
And though oft My answers seem terribly late,
My most precious answer of all is still . . . Wait."