Packing Day

WHY didn't anyone warn me how horrible this would be? It's okay, I forgive you.

Here's a tip if you're planning on moving, even though you really think there won't be much to do or that you can get it done quickly do NOT wait until 3 days beforehand to start everything.   You may think that people will show up and help and everything will be peachy but really, does life always work out how you want it to? :P  

So, I'm going to complain at you for a bit because well, this is a blog and it's what mommies do sometimes.
So I slept for 4 hours last night. Kinda one of those nights where you think you're big and bad and 18 years old and can pull an all nighter.  At about 4am, reality begins to kick in and you give up. Well, at least I do.  So, I'm a tad sleepy but surprisingly I haven't attempted to pass out yet.  Secondly, holy allergies batman.  I dislike this tree pollen. I used to only have allergies in the late summer, but apparently that wasn't enough for me. I can't stop sneezing and itching and sniffling. Which is making me miserableeee. Thirdly, I'm hungry. We got some donuts for beeakfast and ate those and we are having pizza in a few hours once the boyfriend's friends come to help load the Uhaul truck up. But till then, I found a stray Hot Pocket in the freezer and the lil one is eating a corndog (eeew).  My last complaint is the fact that other than the loading help of his friends I have no one to help me clean the house and finish packing everything up. Which, I mean I really can't complain because the boyfriend has helped a lot and its MY house after all. Just wish I had a couple compassionate souls available. (I DON"T mean those of you that would but can't) And my poor sister is sickly in bed today. Boo. 

Well, I suppose I should stop blogging and get back to work. I have one room completely finished!!  We are heading out at 7am (yes, apparently there IS a 7am) and it's about a 6-7 hour trip depending on stops ect. See you all when I'm no longer a New Yorker!

It's almost time!

WOW! I can't believe that we only have 4 days left until we move! This last month has really flown by. Thankfully as the time gets closer we've been getting everything more in place.

Some news first, we have a car!! I'm soo excited that we found an awesome deal.  The car will be waiting for us in Michigan. It's a 2001 Chevy Cavalier, silver with no marks or dents.  I'm glad that we found a smaller car that will be easier for me to drive and gets great gas mileage. It has been so long since I've had my own car and been able to go out without needing to take a bus or taxi (and I'm sure Max will love it too!).   This will give us better opportunities to go out and do things as well as finding more doctors to get our diagnosis.

Aside from our car news, Everything else seems to have fallen into place for the move.  Max's therapy has pretty much been set up, but I need to call when I get there for complete details.  He will be seen at the school for the month of May and then 6 weeks in the summer. I will drive him there. Then in September, Max will be put into a special preschool program that kids with special needs may enter at age 3.  I know that Max will LOVE school and seeing other kids.  Another plus, is he will have a cousin in the same school as him, so I think that will help him be comfortable as well.  As for doctors, we have set where we would like Max to go for his pediatrician but I still need to find myself a family doctor and find us both Neurologists. 

The rest of this week, will be full of packing and last minute errands like Max's last checkup here.  Friday we will be getting the Uhaul trailer and loading it up and then heading out Saturday morning. Max has a new booster carseat, a new monkey neck pillow and an activity tray that straps to his seat for the trip.  I hope everything goes smoothly and I'll be sure to update once we get there!

New Beginnnings...

We are moving in 28 days!!!

We are taking a BIG step and moving to Michigan on May 4th.  We are going to be staying with Adam's parents for a while for a few reasons.  This move will help us to save money and figure out what we want to do with our lives. Max will have more kids to play with and cousins close which will be awesome for his development and all around happiness!  We will also be there to help his parents out around the house and with his dad.  I'm glad that this move will be good for everyone involved! 

Moving with a toddler will be interesting.  We moved once before but it was just across town so not too much changed. We are going to have a friend drive us with a uhaul trailer behind us on the 6-7 hour drive. (Any traveling with toddler suggestions are more than welcome lol).  
One of the biggest changes will be Maxtyn's therapy.  I am hoping that he responds well to new therapists and continues to progress.   He will be too old for the Early Intervention program this summer so either way he'd be losing his current therapists. Never the less, this move will be very good for Maxtyn. Oh, and the elementary school is like a 2 minute drive! :) 

How will the move be effecting me? 
I'm very excited. There will be many more opportunities for us. First off, we will have a car, finally!!! Woo hoo! I am excited to be able to get in my car at midnight and run to the store if I want to. We will never have to use a cab again! We will also have more opportunities to see more doctors and further go on with our diagnoses and testing.  This is a big problem that we always had was affording bus tickets or trying to find someone that could help us get to places we needed to go where the buses didn't run.  I"m also excited to be able to take Max to new places! Parks, zoos, all kinds of places are now opportunities! And another big thing is we can go on DATES! What are those you ask? These things where mommies and daddies go out and have dinner or go to a movie without a child there. Crazy thought right? I did it once, lol. Now that we will have more family and support, we can do things without always taking Max with us, however it will be hard for me at first. ;) Oh, and I will be close to my awesome Aunt and cousin who I haven't seen since I was little! Yayy!

This past year has been rough for us.  Losing Chris and all the memories here has been hard.   We also have had to deal with court and other family issues.  I can't wait until I'm able to go to walmart without being worried about running into people who try to ruin my life.  Or people stopping by my house or watching me. What a relief that will be!  I am excited to be able to be more social and hopefully work on myself, my weight and my strength.  I'll be sure to update you all along the way too :) 

- Amy

Never thought a diagnosis could be such a good thing..

When you hear someone talk about receiving a diagnosis, it's normally looked at as a negative topic, however for my family it is a relief and gives  hope. 

I grew up having many physical issues, as I had in common with my dad and sister as well as other extended family members. It had really become just a part of life.  It was difficult to live with especially when you had to explain to someone the pain and fatigue that you had to deal with but you couldn't even tell them what it was. It was frustrating when people did not understand. " I don't see anything wrong with you, you aren't in a wheel chair. How do you know something is wrong when you don't even know what its called? " Among other statements I dealt with. The only people who ever understood the way I felt and the difficulties I had were a few family members who had to live with the same " muscle problem ". 

I had pretty much given up hope that I would ever know what was wrong with me.  I had family get tested and never really found anything that was an official diagnosis.  I would just have to live with it and go on with life.   

In 2010 as many of you know I had my son, Maxtyn.  He was 5  weeks premature and was having respiratory issues.   While Max was in the NICU I knew I'd passed down this muscle disorder to him.  I felt the tremors in his little feet and hands. Doctors had kept telling me that he was going through withdrawal of medication he was given while on the ventilator, or that he was having seizures, there was something wrong with his brain.  After some neurological tests and a couple EEGs they finally decided that he was probably just still going through a little withdraw.  Why would they listen to me, someone who didn't even know what she had?

Lets fast forward.  It has been 3 years since I brought Max home. He has had PT for almost 3 years straight now, 3-4 times a week as well as a year of speech therapy and 2 years off and on occupational. Right now, Maxtyn receives a total of 7-9 sessions of therapy a week to assist in his physical delays and muscle weakness. He isn't fully walking but he walks about the same amount he crawls. He has come so far!

About a week ago, my sister recieved news that her biopsy had shown results (which we had been nervously anticipating for a while now). Her nuerologist has diagnosed her with Mitochondrial Myopathy.. also known as Mitochondrial disease.  I am so excited. I don't think i've ever been so excited and hopeful for a diagnosis in my life. Could it be possible that Maxtyn could live a semi normal life? Play sports? Do things with friends without having to stay behind because he was too fatigued?   Could we learn what it is like to walk around walmart without leaving in pain? To actually have an enjoyable experience shopping with friends, going for walks?  Maybe I am getting ahead of myself, but who wouldn't be excited? I read about a woman who had said " It was amazing to walk without even thinking about it". How awesome is that?? 

I'm really getting ahead of myself!  First of all, there are many types of Mito.  The next step is to try and figure out exactly which one so that they can see what treatments are available. I need to find myself a doctor and get an official diagnosis for myself and Maxtyn (and since we are moving in a month...blog to come on that too... we need to wait to find doctors up in MI).  I hope that they are able to find out the exact diagnosis so that we can start treatment and medication that may give us more energy. (And I can maybe start to lose this baby weight!!). 

I"ll update every step of the way, promise! 

-  Amy

I can't believe how much Maxtyn is growing. He is still not walking, but he is cruising along the couch and standing at EVERYTHING. Tonight for the first time, he stood up without holding on to anything or anyone! It wasn't for very long but it was a BIG step for us!

Aside from the physical achievements, Max is getting so smart! He babbles along to his favorite shows and tries to sing along to the songs.  He has quite the vocabulary going on! I'm going to attempt to make a list of all the words he says (and hopefully don't leave any out).

Icky
Ucky(for " sucky " which is his binky)
Juice
eeez! (cheese when getting his picture taken, or eating cheese)
No
Hi
Nom nom (for food)
bubba (bubble)
mama
dada
Uh oh
Oh no
i did it
yay

If something is missing...

So, recently things have been going missing in my house. 

Apparently, Maxtyn's favorite game is " how many places can find to put things into?" 
I have come up with a list of all the places in which you may find missing things in my house.
The reason I am sharing it with you? Because it's pretty funny. :) 

#1 - The drawer under the stove that people usually store pans in. No, this is Max's drawer. This is the first place we look when something goes missing. 
#2 - Shoes/boots. My boyfriend has gone to work many times wondering why his boot is very uncomfortable.
#3 - cupboards - he loves taking pots n pans out of the cupboards and putting them plus more things in them. Including himself. 
#4 - random boxes. Anytime we have pop boxes, boxes from mail, ect we ALWAYS check before throwing it out. He loves stuffing things in them that really don't belong there!
#5 - Anything that possibly can fit things inside  it. 

Lesson of the day, DON"T throw anything away without making sure there isn't anything in it first! I love my silly monkey!

My lovey is growing so much!

So, Max had his annual review this week for Early Intervention! 
He no longer qualifies for OT ( occupational Therapy ) because he is cognitively, socially, and his fine motor skills are awesome for his age. He is actually ahead! My smarty pants! He still qualifies for PT (physical therapy). He still needs to work on standing so he can work on WALKING!! 

During the review, we had his OT, PT, Social worker, and the service coordinator. Mind you, he gets (got ) therapy 4 days a week. The coordinator was going through age appropriate things and says " Is he throwing tantrums yet?" And, not lying, the whole room started to laugh. (PT, OT, Social worker, Me, and my boyfriend). It was pretty funny. 

Also, they are going to evaluate Max for speech therapy. He is still a bit young to worry about it but they are going to test him anyway. 

Another update, max is starting to say words! So far, he says: Icky, cookie, nomnoms, no, yeah, fishies, and momma.   He seems to imitate the tv or what someone says sometimes but its unclear if he's really saying words or just making sounds and I get too excited. Hehe.