Weekend Update and What's New

This is going to be really loooooong. I posted to Zach's CaringBridge site but neglected my blog...too much going on. So here is the copy/paste addition.

I am very conflicted right now about what to do and what is going on.......

First a small update on Zachary.
He had his first feed toward the end he complained of pain. We stopped it early.
Then the diarrhea came....it was bad and oh so foul smelling I needed to change his pants (this is extremely common with his bowel movements).
He was out of sorts most of the day with spurts of energy and happiness here and there. He has wanted carried a lot today and we've been hearing "I want up" a lot more lately but today he was really bad with wanting/needing carried around.
His second feed he refused.His third feed, he gave into letting us hook him up but is now screaming "mommy stop my pump" and crying. - small update -- Doug now has him laughing and enjoying football, while still using his pump :) -- another small update: we've had to stop this feed too :(

To top this all off Doug's Grandma is in serious condition after experiencing her 2nd major heart attack this week. My in-laws are on their way up there first thing tomorrow. AND we have no clue if we will be able to make it up there because of all that is happening here. Zach is getting worse and travel will be very hard (we have not traveled in 2 years and now that things are even different there is such a fear to be far from our doctors). Doug is contemplating going without the kids and I but worried about us being here with no help. I know that Grandma knows and would understand. Doug is very grateful he was able to talk with her last night and let her know he loves her as do we all.I know my CaringBridge site is about Zach but please keep Doug's family in your thoughts during this difficult time. Grandma has lived a very long wonderful life and we all want her to have some comfort and peace.

Right now all I want to do is cry!
Last night was a horrible night for Zachary. He woke up screaming - yet again. We got most of it on tape. This episode lasted about 30 minutes. He would tense up and then just shake his arms and legs. He would move his head....but not just move it more like throw it back and forth. He wanted to be in my lap but did not want me to touch him. He screamed until he turned blue. I'm unsure tears were even coming out the whole time. The scream is blood curdling it sounds as if we are hurting our son. These episodes are becoming much more frequent and much harder to watch as they happen. They wear him out.....he needs to be carried back to his room like you carry an infant.
This morning was the first time I saw something new......He wouldn't wake up. He was laying in his bed, on his tummy and I can't even say he looked peaceful, he looked stiff. Normally the sound of his door opening wakes him - not today. This is the first time in 3 years his door did not wake him. Me rustling in his room did not wake him, me talking softly to him did not wake him. It was not until I physical touched him that his eyes opened. It was as if this last episode took so much out of him.
I reminded him he had school and he let me put him on his changing table to get him ready. While he was up there he asked if I was picking him up at school and I told him no he will ride the bus home. He flipped out and started crying and saying "I no no go"I sent him to school anyway. I feel mean for it, but he is not sick. I've been reading one of the best things to do when the child is having a bad day is to send them to school so the teacher can see the difference in the child. This way we have more support when we need it from another area. I did send a note stating I will pick him up if need be.
BUT I am hoping he will start to have a better day.I'm also very upset because I have bad news to report.....we do not have an appointment in Atlanta yet. The doctor up there needs a referral letter from our pediatrician. She sent one 2 weeks ago......I sent a copy of it with all the records we sent up there AND yet they are saying they don't have it. I sent another one just a little bit ago and at 9am I will call our doctor here and have her call them. UGH this is such a pain!!!!!!
-------small update: I just heard back from Camille (she is the scheduling coordinator) she received the letter I just sent and will contact me with an appointment if indicated from the doctor as soon as she hears from them. PLEASE if you pray please pray we hear something...something positive with an appointment soon! For Zach's sake and for our sanity we really need some answers as we are watching our son getting worse.

Well, I have become really frustrated over the episodes that keep happening more frequently and are becoming worse. So I called the pediatrician this morning and she had me get Zach and bring him in. She wanted to make sure these aren't seizure activity.
I picked up Zach and headed to the doctor. He was happy to see me and was having a good day at school. When I got there he was with Coach --- I never knew that they take the kids in small groups for extra PE. I'll just think of it as some extra PT he needs :)We got to the doctor and were seen right away (she is always so good about that - sure makes going there easier) She wants Zach to see yet another doctor a neurologist but not the same one we've seen....this one specializes in something else. _ Please forgive me for being vague, I have a lot going on in my head right now. She is going to e-mail this doctor personally today to let her know the severity of Zachary's case. She is hoping that she will see Zach quickly and also run a sleep study as well as electromyogram (EMG) and anerve conduction velocity (NCV). The last 2 tests are to help rule out MD. We had a worry of possible MD in the past and some blood tests that were done basically didn't rule anything out but the two neurologists that we've seen both agreed to continue being watchful. So with all that is happening she feels it best to move forward with some more testing for MD -- just in case.
It is very hard for me to explain....Zach looks normal, and pretty much acts normal - but there are times where he can't do normal things. He seems to be having a lot of that lately. Like this weekend we were at Publix and Zach was making this new noise he makes (kind of like a grunting sound) an older woman walked past us and says "That is an awful noise your son is making" She made me feel bad and poor Zach he looked so worried and wouldn't you know the sound became worse after she said something to us. OR Zach's feet turn in when he walks, or sometimes he can only walk stomping or up on his toes. OR talking his first sound was the D sound and this weekend he could NOT use the D sound when trying to say "drop" -- what would normally come out clear came out so messed up he was frustrated we had no idea what he was taking about. OR Zach asking to be carried a lot more lately. OR Zach holding scissors in one had but needed his OT to actually move his other arm and hand -- help put paper in the hand and hold his hand shut because he could NOT do it himself. I don't know...these are just a few of the many examples I could list. BUT I have to add just like I told the doctor these things DO happen but so far they aren't happening all of the time but they are occurring much more frequently.
As Dr M says "there is regression happening, and we want to try to stop it from occurring if at all possible or at least find out what is causing it"While we were at her office she had the progress note from Dr E. It was very dishearteningto read what he thinks. I knew from talking with him, but seeing this in black and white just seem worse sometimes. Dr M is going to do some research on treatment for mitochondrial disease so that she is up to speed as she can be. I'm scared, as we now have 3 doctors who really think this is a high possibilityof what we are dealing with.
Please pray for my little boy!