Wednesday, November 30, 2011

Can I quit???

At this second I just feel so done... just so done... I don't want to do this anymore. I want off this ride and I don't know if I even want answers. I hate the loss of innocence I once had. I hate finding out more disease that parents have to hear "I am sorry there is nothing we can do" it seems so unfair and I don't want my heart or my mind to hear of this anymore more. Very long story short I will go back and fill in details of the last two days at a later time. From what we know Matt does not have leukodystrophy - we have now moved on to testing for Battens Disease. There is no hope for Battens disease. No hope at all.

Sunday, November 27, 2011

Today... Tomorrow... Yesterday....

Tomorrow is the day I have been waiting months for, usually before a big appt I am nervous, today not really. I am anxious and partially worried but not really more than I have been the last 3 months. In my head I tell myself that the test will be negative. In my head I tell myself that nothing is really wrong with my son, it is all in my head. I don't think it even matters that I know we are past that. Yesterday I reminded my best friend about the appt, she asked me what I wanted to do when I got the news. She wanted to know how I would cope with bad news or how I wanted to celebrate with good news. I told her that with this appt, I just get news, no good news will come of this. I don't want my son to have leukodystrophy but at the same I want to know what he has, I want to know what the future holds. It will kill me if my son just gets worse and worse and I have no clue what causes it. I can't imagine my son passing and now knowing what took his life. I also wonder what the future will hold if it is positive, (I hope that if it was positive they would have contacted me months ago) I wonder if Matt would qualify for a bone marrow transplant or since he has symptoms if there will be no hope. I wonder what this month will hold if I get earth shattering news tomorrow. Today..... UGH!!!! This morning I woke up and I went to church. Matt was evaluated when he moved to the preschool class by the special needs department. The evaluator told me that he was doing good in class and didn't feel he needed a buddy. I was fine with that, she told me she would put him in the system in case he was having a bad day and I felt he needed the extra help. Matt has regressed more since august, the regression isn't as noticeable to me since I see him everyday but I know it is there. He has become extremely oral, he has to have his pacifier at all times and when he doesn't have it he has to have something or he licks himself, sticks his hands down his throat, chews on his clothes, bites... anything he can find to meet that need. When I was getting ready for church I had the thought maybe he does need a buddy at this point, but then I thought you know he does really well in class I won't mention it, he has done great. His teachers seem great with him. Last week we had to park really far there was no special needs parking and I go to a pretty big church. I brought Matt's stroller in, he didn't have his special needs stroller so it was just the normal stroller. It wasn't a big deal, I walked in took him to his normal class, he didn't want to get out of the stroller for a while and they didn't rush him. This week he told me he wanted to take the stroller so we took his new stroller in. I walked into the preschool area and suddenly I jumped into a nightmare (maybe not that bad but still makes me want to cry) The lady at the front started frantically searching for the special needs coordinator who just left saying that Matt needed a buddy. She walked with me to the class, she took Matt out of his normal class and put him in the class with the younger kids where she said they are better equipped to handle special needs. She talked to Matt different... she introduced him to the class and asked if anyone wanted to help him play with blocks. I know his doesn't sound that bad now, but it was frustrating... this is the same child that has been in this department since august. I did tell my friend at the church who also has a special needs child and is the nursery coordinator then she went over to talk to her. I ended up just going to the morning service and then helping in the nursery because I just wanted to hide from the world. I was going to write a really fun post about last night with lots of pictures. I might go back and add pictures with my phone. Last night we took Matt to incredible pizza company. We had such a good time. I love that place. There are not a lot of them yet across the country but they are growing. We ate dinner then we played putt-putt golf, saw a XD movie, made a Santa Clause stuffed animal, bowled, Kevin rode a roller coaster ride, and played games. So much fun!

Saturday, November 26, 2011

Putting up the tree...

I am very saddened as I am getting all the Christmas stuff put up. I have spent some time thinking about last year. Usually you think about how much your child has changed and gown in the last year. Christmas has so many memories it is a definite marker in time. As I think I am reminded that my son has regressed so much this year developmentally in every area he is behind where he was last year. It is really sad to think that he has changed so much for the year.
Also I am not seeing the next year bring hope of a better year, I have do much fear.

Thursday, November 24, 2011

Sea World

Today was really nice, tomorrow for Thanksgiving we are going to my brothers who is cooking Thanksgiving dinner. This is the first time in years I haven't cook Thanksgiving dinner. I am only in charge of the wine and a pecan pie. Since I had the free time and Kevin had a mostly free day we decided to go to Sea World. It was really nice, the weather was great for Sea World and I loved all the holiday decorations and themes.
Matt is very expressive but he doesn't have a wide range of emotion, he usually goes between blah, calm, hyper, and angry. While riding the rides at Sea World it is the only time he is truly happy. It is such a nice time.
Here are the pics... Some of them have major glares but I still thought they were worth sharing.
Happy Thanksgiving!

Tuesday, November 22, 2011

Different

Today we got to get fitted for and pick up Matt's special needs stroller. I am so glad it came in. I have been putting Matt in his current too small stroller almost everyday and it is so nice for him to have a comfortable one that fits him. Matt loves it! We went two places today with it and the whole time he was calm. This is a nice change.
The weird thing is I have been frustrated in the past at times that people see Matt and assume he is a typical child, they look at his behaviors as bratty and they judge me for not being able to control him. This is only a little of the time, I also enjoy that he seems so typical and he seems healthy so much of the time. Today it was weird to walk around with him in his stroller, at first glance people could see he was different, for the first time there were many lingering glances where people were looking at his chair, before it felt more like they saw him. I guess it will take a while to adjust.

Friday, November 18, 2011

MRI

So glad that the MRI is over! I really tried to prepare Matt for the MRI, I talked to him, I told him they were going to take pictures of his brain, I kept showing him where is brain was. (he kept forgetting and thinking it was in his arm) I told him they were going to stick a little needle in him to help him go to sleep. Even though these things might scare him I always want to be honest with him about what is going to happen and I want to prepare him. I would want to be prepared if I were him. We got to the hospital yesterday we checked in and went to our room. It was the same room we were in last year. The doctors and nurses remembered us from last year. I answered all of their questions signed all their paper work and then it was time for the I.V. We had to wrap Matt up and of course he was scared, but the first stick he didn't do that bad. There was crying and screaming but it wasn't that bad. I wish it had ended there. They were not able to find his vein, the dug around or a while (like they do) then they pulled it out and tried another spot. Didn't work there either. I asked if he could take a break for a minute before they tried his feet. I held him and he just cried and cried. I got him calm but as soon as I laid him down again he started screaming. They tried his right foot twice with no luck, then his left foot, then they went to his right arm where they got it. He got stuck 7 or 8 times. It was awful! He cried so much and kept asking why we had to do this to him. At one point he put his arms around me and gave me the biggest hug trying to get past the pain. It was so very hard to see them having to do this, and knowing it had to be done. After the IV they went and got Matt a car. They gave him Matar, they asked if we already had it and i said yes so they went to go get a different car, it was the missal one, which Matt also has, but they said to keep both they felt so bad. At the end of the day they even let him pic two prizes. They also offered the tape - anything they had. I told Matt to say thank you for the cars - he wouldn't say thank you and I didn't push it, that is a lot of a little body to go through. The MRI went smoothly and he woke up fine - praise God! I am so glad it is over and I eagerly await the results. We go see doctor M on Monday, I hope to get answers then. With the holidays this week I don't know when I will hear from his neurologist.

Wednesday, November 16, 2011

Moving Mountains

Matt's MRI is scheduled for 10:30 tomorrow morning. We have to be at the hospital at 9am. Today at 3:30 I got a call from the hospital saying that we had to cancel the appointment because Matt's insurance denied the approval. I told the nurse I didn't want to cancel the appointment and I was going to try everything I could to get the approval, knowing I only had an hour and a half of the business day. I started calling every number for my insurance company I could find. I found out that it had been denied because they could not read the doctors handwriting. They didn't even call to tell the doctors office. The neurologist office resent all the paperwork but it was still pending approval for a peer to peer review. I drove to the doctors office because no one answers the phone there, at the same time I asked if Matt's pedi could do the peer to peer to get the approval, the insurance company had told me he could, but it made me nervous they would deny it because he wasn't a neurologist. I got to the doctors office, walking in the nurse saw me and knew who I was and why I was there, Dr T was at the airport and there was nothing he could do tonight and he would call at 8am, they were upset by everything too. Long story short my son's pedi saved the day got the approval and we are still on for tomorrow. What a stressful 2 hours!!!!

Loss of innocence

I hate that I have a loss of innocence, this last few months I have been made aware how unfair life is. I now know that there are so many rare diseases out that that just rob children of their lives. I now know even with all the medical advancements out there parents are still hearing all the time "there is nothing we can do". This is a harsh reality and I don't like knowing it is there. I completely believe knowledge is power, but at the same time I believe ignorance is bliss. I hate that when I see babies or pictures of babies I don't think joyful thoughts of a new life full of possibilities, I wonder if one day their parents will have to hear heart breaking news. I still pray that I won't have to hear this news, but at the same time I am so scared of the future. I hate the reality that I am in, I hate all the test, all the questions, I hate not knowing what tomorrow will bring. I hate anytime Matt breathes a little funny I stand on full alert hoping that this is not a sign his lungs are giving out. I have been made fully aware so many times that if he ever starts breathing different take him straight to the ER. I hate that today I have to try to prepare him for tomorrow, he knows now that doctors can be scary, hospitals are awful and almost always lead to pain. I hate knowing that tomorrow we are going to have to walk into a hospital, I will have to hold him down, and he will have to be put under. I hate that we don't know if that is really safe in Matt's case, and the doctor wasn't sure if we should even do it. I hate that I will have to wait hoping he wakes up fine, and when he wakes up I know he will be so terrified of being there. I hate having to wait for the test results... I hate the possibility of this not giving us any answers and I hate even more the possibility of the answers it will give us.

Tuesday, November 15, 2011

Update

After writing my last post I called Dr. T, Matt's neurologist that to this date has not been very helpful. I actually got to speak to his nurse instead of leaving a voice mail. (I have left two voice mails this last week with no answers) I told her that Matt is still regressing even off of the medication. She scheduled an emergency appt for the next day. So Thursday we went into his office. No one was there, I was a little early and the office was empty except the staff. There ended up being two other appts that were both new emergency appt from the hospital. We saw Dr T first, he didn't know what to make of Matt's regression he keeps saying it is very rare to regress. I think he probably didn't want to tell me what the possibilities are because he doesn't know that I am already aware and I haven't told him about the luekodystrophy testing. At one point he was looking at Matt's blood work, which of course was normal and he said "his thyroid is fine, that would have been treatable" It was just another reminder that there is a good possibility when we find out what Matt has it won't be treatable. Dr T, said physical regression is not helpful in pointing out the problem, he said that any system can cause fatigue etc, so he did watch him run but didn't tell me if he saw any thing. We talked about his speech regression and his emotional regression. He said the best place to start would be an MRI. I was very relieved to hear this. I have been wanting and MRI for months. An MRI should point to or rule out leukodystrophy as well and maybe give us more insight as to what is going on. When leaving the office the nurse told me the normal wait for an MRI is still about 3 weeks, she told me when scheduling called to get on the emergency list. She didn't think scheduling would have a chance to call me before Monday, but they called on Friday and we set up an appt for Nov 29. I was really bummed because I wanted to have the MRI in hand when I go to Dr. M's office (the genetic / metabolic doctor). Due to our schedule we are great candidates for a cancellation appt because we wake up later than a lot of families so it is easy not to feed him before they call in the morning since most people don't cancel until the morning of. On Monday morning I got a call, there have been four cancellations this week and I had my choice of appts. We are scheduled for Thursday at 10:30, we have to get there at 9. It is Kevin's birthday and he is a little bummed I made other plans but I know he understands how important this is. In other news Matt's behavior has been awful!!!! He has been very emotional at all times when I leave him he cries and cries, when we leave Kevin he cries and cries, in therapy he has been running away and hiding and just not working with us. Yesterday Matt's PT had to block the closet and I had to block the door. He has been biting, scratching, charging and hitting. I have had to learn how to physically restrain him where he can't hit or bite me when I am holding him. (Thank you Jackie for this, it has helped a lot) Yesterday for no reason he wasn't even upset he took a sharp pencil and stabbed me in the head. I don't know what is going on but it is so frustrating. He will be sitting there very normal being very happy and then it is light a switch goes off and he just changes into someone else.

Wednesday, November 9, 2011

Small Regressions

Today when Matt's PT got here he asked to go outside. I said of course so we got him dressed and we went outside. Matt loves to run, he can't do it long and falls at times, but he loves to run. Last time we went outside was about 2 weeks ago. We started on his trike and then went to racing. He got tired fast, after about 5-10 minutes he was breathing hard and starting to stumble. He was tired for the rest of the day and it took him a few days to catch up from being tired. He didn't want to ride his trike today, we went straight to racing. He fell to the ground walking to hand me his paci before he started racing. (he has been so unstable lately) Then he started running, but after running about 200 feet he was so tired. His gait became crazy, his knees were almost crossing each other, his knees kept trying to give out, he fell a few times, the therapist was running right with him to catch him. There was a very noticeable difference from two weeks ago. I hate regression. Even today when it was time to come inside there was no protesting. He was just done.

Saturday, November 5, 2011

Now days...

This is how Matt spends most his days unless we leave the house. If we leave the house he will get up, but until then he just wants to lay around. Today he has gotten up to request food and drink and to color. Now he is back on the couch. He also slept 14 hours last night (since he has sleeping issues I don't know how much of it is sleep).

At night he gets very hyper, as soon as his body starts telling him he is tired there is a slow progression from laying around to jumping up and down, screaming, not listening, hitting us, being all around crazy until we give him his meds they kick in and he can fall asleep.

Friday, November 4, 2011

Things I know now that I wish I didn't.

After seeing Dr. T I know more now that I wish I didn't.

In the past she has been the main doctor saying that she didn't know what was wrong with Matty, she always said he was a work in progress. She did always thing that Matt has ADHD and was even treating for ADHD-ODD. We stopped trying to treat it with his last regression, he calmed on his own from lack of energy. She thought he could go either way. That he could have something wrong or he could just grow out of whatever it is. Now her tune has changed the outlook is much more bleak.

Things we know.

-She can no longer help us.
-She wants me to keep her updated, but it is not her specialty.
-If Matt's metabolic doctor runs out of ideas there is another one we can see.
-She will write an e-mail to the neurologist that she works with. (this is our second neurologist that I really like)
-She thinks an MRI would be helpful but she will leave that in the neurological hands and if he thinks it is needed. (she trust him)
-The neurologist I am talking about had a accident and had to have surgery so has been and is still out of the office, plus he books appts very far in advance.
-She thinks we are on the right path she agrees that Matt has a neuro-metabolic disorder.
-She says there are a lot of neuro-metabolic disorders that to test all of them at once would take all of Matt's body fluids.
-This could be a very long process.
-They have to test systematically due to cost of testing and the body fluid thing.
-Matt could die before we know what causes it.
-He does not have ADHD-ODD - this is just another symptom of whatever else is going on. (medication won't help)
-He might never be potty trained. She doesn't know what is wrong and she didn't want to give me hope that this is a skill he can have again.

I am very sad.

Wednesday, November 2, 2011

....

When your child is being tested for terminal illnesses you want any doctor you go to tell you, I don't think that is it. It is really hard when you leave another specialist office and they tell you that you are on the right track for testing. 😰
More later.

Tuesday, November 1, 2011

Halloween

We had a good Halloween. I don't know what this coming year is going to bring so I wanted to make the most of this Halloween.
On Tuesday last week we went to an Autism Trick-or-Treat party at a local organization. The same one I am getting counseling from.
Saturday we went to two Fall Festivals one with his cousin and then one at a small church right by our house. Matt had so much fun, the second one was so nice because it was really small and the kids were so friendly.
On Sunday we went to the AccessAbility Fest at Morgan's Wonderland. Matt had a blast riding all the rides and it was a great source of information.
Then Halloween night we went to our church's fall festival. They had a special needs hour, then they had the normal hours. The special needs hour was nice because it was not as busy. Then because Matt wanted to we tried trick-or-treating. All the past years this had been a total bust and I was really reluctant to go. To my surprise this year was great! The neighborhood my friend bought a house in this year was perfect we only went on two streets and everyone was so nice.
Overall I think this Halloween was a success. I don't know if Matt enjoyed every minute of it, but I do hope over all it left him with a nice feeling of the holiday.
Tomorrow we have an appt with Matt's developmental specialist. It will be nice to see her and see what she has to say. We might (slight chance) get the results from the leukodystrophy testing. Usually testing done at that hospital goes to all of the doctors and if that is the case with this testing we will be able to find out. If it is good news I hope we find out. Either way I guess I hope to know. I am really praying if it is a form of Leukodystrophy there is something we can do.