Genetics Adventure.. FINALLY!

Today was a really... REALLY long day for us!

So, up at 8 and on the road at 8:40 towards Grand Rapids for our Genetics appointment that i've been waiting for, for months!  On the way to get gas, my check engine light went off (YAY. It was on for a couple days.. made me nervous.)  We rolled into Grand Rapids after tons of fun construction to drive through, around 10.  Woohoo I'm a half hour early! NOT. I got lost. Not really lost.. but when you don't know a city well, it's hard to find the exact address, along with someplace to park while being rushed by 4 lanes of traffic. SOFUN. So, we actually get to the office 5 minutes late.  Sit for a half hour. Go into one room and do weight and wait 10 minutes till the next room is ready. Sit in the next room for a half hour doing all kinds of genetic counseling.. asking questions.. family tree.. ect.. then finally we met the Geneticist! 

I liked him, a lot. He was familiar with CVS, Mito, and AND Hallermann Strieff! He wants me as his patient too, which is cool since I don't have to go to Detroit now.   He's sure Max has a Mitochondrial Myopathy, and says we shouldn't need a biopsy. He wants us to see a neurologist because he wants to be sure if it's neurological or only muscular. We did a blood test today to rule some things out, make sure all his genes are there and none missing.  Once this comes back in a month, step 2 will be to do some more intensive gene testing. We are hoping to narrow down quite a bit so that it's cheap. Thankfully, MIchigan works with a few big labs, especially one in Texas that will accept our insurance at least with a small copay which is better than 10,000.   He also told me that, Halllerman and Mito have nothing to do with eachother which i was interested in.  He has some good friends who are high up in a craniofacial center in Seattle that he's going to mention me to about doing research, since they have yet to find the gene causing hallermann strieff syndrome.  So we wait a month, meanwhile get a referral for nuerology up at Devos (GR).
Went to get blood taken in another office.. thankfully it was pretty quick and not TOO painful. Max got to pick his bandaid and a prize. 

We left there pretty satisfied (and hungry) and went downstairs. They have a few restaurants and we ate at Smash Burger. I've never been to one but they make a good burger! 

Time to go home. Hour 15 min drive. Maybe that burger wasn't a great idea. Driving through construction with awful tummy pain... need a potty... soon soon soon.... (TMI Sorry!) finally get passed construction 15 mins from where we need to be next and I stopped at a BP and rushed Max into the gas station to find a bathroom. Let me tell you, when you have an Emergency bathroom situation it is NOT convenient to have a child with you. Especially one that isn't able to hop out and run with you!

I made it! Ahhh. Got some drinks and Max found a Hershey's when I had my face in the cooler.  Get going and off to our next stop.  

We got to South Haven thankfully about 15 minutes before our next appt. Orthopedics for new braces. Got stroller, ready to get Max out of the car and he is COVERED in chocolate.. baby wipe bathtime quickly... can't get his shorts clean.. must remind doctor that it's not poop..

Got braces ordered. He wants us to see a pediatric orthopedic surgeon about Max's left food. He has club foot. After all this time SOMEONE finally told me something. He said that it's not looking like its going to fix itself because of where its not moving correctly.  Braces will still help but he may need surgery to release some of the pressure and stiffness in the foot. Note: referrals now needed.. neurology and Pediatic orthopedic.. thankfully all of this is in the same place.

That's about it for our eventful day. I"m going to now sit here and be lazy in my AC as I've walked way too much today and am pooped. 

Oh my goodness, I'm horrible at keeping updated!! Sorry for that..


 So, what's new in the world of Maxtyn?  Back in April/May-ish we got a diagnosis of CVS (Cyclic Vomiting Syndrome) and were prescribed a medication to help with it.  We also got some suggestions for the constipation and YAY we are doing well with our daily Miralax.  Okay, that's enough puke/poo talk.. 

Something exciting and awesome that has happened to us, we joined a group called I Run 4 Michael.  This is a group of disabled kids/adults who are unable to run and are matched with those who run and donate their time and miles to their " Buddies ".  We were paired with an awesome lady named Kim. She lives in Texas and we have gotten very close with her!  Max loves her daily updates of things that she does and sees, and we do the same in return. We are very thankful to have Kim in our lives!

We are going to be trying out round two of preschool this year. Max has only had ONE CVS episode since May. (YAY!) We are hoping this trend continues and he doesn't have to miss much school this year!  

The potty training adventures have kinda been put on hold. The sensory and physical weakness issues he's having are pulling us backwards a bit.  His doctor said that he's not too worried right now because Max is doing well getting over the CVS and constipation.  Once he's physically able to pull his pants down and sit on the potty, and we can work on the behavior aspects of potty training with therapists, we will try again!   

Maxtyn will also be screened for Autism. If he does have it, it would be high functioning.  There are a few sensory and behavioral signs that make us (Doctor, therapists, family) think that he might be on the spectrum somewhere.  He is SUPER smart too.  He's already reading books with minimal help at 4 years old! I'm such a proud mommy.   It makes me tear up when I can write him a letter and have him read it and understand it. 

Lets see... Oh! Genetics will be coming up here in a few weeks. We are hoping that it (eventually) leads to an official and exact Mito diagnosis.  This would be AWESOME.  Well, not the fact that we have it, but finally knowing what type so that we may be able to treat some of the symptoms! 

In other, non medical news... We have moved into our own apartment in the next town over.   We are less than 10 minutes away from Grandma and Grandpa so it's not a huge change for Max.   It's a quiet area near a small lake.  Max has his own room and we have two bathrooms (YESSSSS).   Adam has been promoted, and will soon be getting a raise which will be nice for Christmas time! 

As for me, my biopsy wasn't helpful at all. Sadly, that happens sometimes with Mito.  I'll be going to U of M in October to see a Genetics team.  I'm also getting my gallbladder out tomorrow. YAY! I can't wait to be able to eat without pain every day!  

WOW. I haven't posted in forever.. sorry!

So.. what's new...

So life in Michigan is going lovely, though i do miss my family in NY alot. Oh, I'm engaged! We are getting married September 30th.  I am SO excited! Planning a wedding is SO much fun. Oh, and not to mention Maxtyn is wayyyy excited!

Some updates on Maxtyn you ask? Of course!

Max is doing well overall, with some speedbumps as always lol.  Max has been getting sick (vomiting) about every 3-4 weeks. Thankfully we have done well at keeping him out of the hospital for the most part. (TY Zofran!).  Because of this he has missed a lot of school.  We decided that being Max JUST turned 4 and most kids his age aren't in school yet, to take him out.  He was missing too much getting sick so often and not to mention how easily he got sick from other kids.  We are doing lots of fun things at home teaching him and he's ahead of most kids his age as far as reading, ABCs, numbers, ect.   

Max is still getting therapy through the outpatient center.  He loves his therapists and they're awesome with him.  

Aside from the vomiting (yuck) he's having constipation issues.. badly. :( 

I'm thinking we will be seeing a GI doctor in the near future. I really think that Mito has screwed up his bowls or GI tract or something related.   Now that the weather (I sure hope) will be clearing up soon we will be able to get some specialists up at Bronson Children's Hospital. 

So much fun getting specialists is. Let's see to name a few we will most likely be seeing... Geneticist, Neurologist, Urologist, Immunologist, GI doc, can't remember what else off the top of my head. Fun stuff right? Lol whatever makes my baby boy feel the best is what we will do.  

As for my health.. 

My muscle biopsy is Monday...YAY! I can't wait to finally have my own diagnosis and move on towards genetic testing to find out the specifics of my Mito.  

Another event is my left hand (thankfully not my right!) has been in constant pain. I can barely lift, push pull ect with it. They think it started as some kinda arthritis or carpel tunnel.  Well, last friday I slipped on ice at Red Lobster and fell right on my hand so now it's worse. =\   Get to see a hand surgeon now woo lol. Our life is so exciting!

As for Adam (fiance) he's doing fine. Working as usual! Lol. He will be working A LOT the next few months so that we can save up for the wedding. I am so excited (Did I already say that? Well, I AM!).  He has done a lot for Max and I and he loves that boy so much.  Once we are married, he's also going to adopt Max (not like he doesn't already take the role on now lol). 

OK, my hand is killing me so I'm signing off for the night. I am SO sorry I keep lacking on my blogging. Someone poke me more often and remind me LOL. 

Nini everyone!

A day in the life of " Mito ".

So, after recently reading about the " Spoon Theory", I've been inspired to write my own blog about my own experiences in daily life. My purpose is NOT to get pity or whatever, it's just to show people what I"m actually thinking and feeling because it's not really something you can " See ". 

 It's 8:00 AM and my alarm goes off.  Half awake, I get Max up and we stumble around towards the stairs.  We sit side by side on the step and scoot down on our butts down each one to the bottom.  Sleepily, I get Max something to eat and go back upstairs on my hands and feet to find him something to wear to school.   Ugh, I'm out of breathe. I need to stop and rest a minute.  
I get his clothes and scoot back downstairs to get him dressed.  Diaper, pants, shirt, socks, braces, shoes, leg straps. We watch TV a little bit and then get him in the stroller and get his coat on. I take him outside and have to sit in a chair to wait for his ride to school.  When the van arrives, I push him to the van and put his backpack in. I sit on the floor of the van to unbuckle him and then use as much strength as possible to lift him into the van. Sit back down because lifting him was tiresome and buckle him while sitting. Stand up, fold the stroller up and put it in, and walk back into the house to take a break from the walk back in. 

Now that Max is gone, shower time. Do the whole stairs fiasco again to get myself clothes. I take baths instead of showers, or when I do decide to shower, I do so sitting. I can't stand long enough. Washing my hair is tough but not as bad now that I have short hair. Keeping my hands up like that in my hair gets tiresome. I have to shave my underarms... I HATE this task. It's very difficult holding my arms up for any amount of time, but when Its over with, I get to relax a bit.

Time to get some cleaning done. Ugh. Just the thought of it tires me out!   I normally sit to vaccum. Or " crawl" kinda. My eyes are pretty bad and being close to the floor to see, as well as not having to stand to vaccuum makes it a bit easier.   I have to do dishes, even if I use the dishwasher, they stil need rinsed off. Time to get the stool and put it by the sink. Its very hard to focus on doing the dishes when you can barely focus on standing there. Now I better eat something, because when I go too long without eating, I get nauseous. There are other daily issues with my stomach, but i'll spare you the details..

Normally I'll sit on the computer a while till Max gets home. I'll then repeat the process of getting him back inside. 
Today is a day Max has therapy. I get the stroller and go through the same process, of loading him in and out of the car, the office and back in the car and to the house. Its just easier for the both of us to use the stroller, since he doesn't have the strength to walk the whole way yet either.

Come home, relax a while, do our own thing. It's lovely. 
 If it's my turn to make some dinner, I'll get my trusty stool again and sit near the oven to make dinner. 

Woops, I have to run to the store for something for dinner. At the store, I use an electric wheelchair.  I can feel the looks people give me. " There's nothing wrong with her, she's being lazy" I can feel it.. I try to ignore it.  It doesn't bother me as much since I moved to a new area. People don't know me. If they talk, it won't ever spread around. I shouldn't be as embarrassed. If I could just wear a sign around my neck where ever I go that says " I'M NOT LAZY, I CAN'T DO THIS WALKING". But alas, that would probably be worse. 

 Often, I avoid outings when people invite us places. I feel bad, and that they don't understand.  I hate being asked to go soemwhere and having to worry about, " Is it going to be hot?" " How much walking is there? " " will I be able to get drinks?" " will there be places to sit or take breaks?" " WIll I hold other people back?". It's not really fun at all. 

Let's skip to bedtime. Sleeping is so bittersweet. I love sleep. Its probably my favorite thing to do. Though, I'm a horrible sleeper. I can't lay a certain way for too long or I get majorly uncomfortable and have to move my muscles. Between myself constantly moving and my son, we don't always get the best sleep.

Well, that's a basic day for me. I hope this helps someone understand a bit or at least help someone relate to it. Ty for reading and follow if you'd like :) 

Illinois..fun..and storms.. Oh.. and puke.

As you may know, last Friday we took a trip to visit some family in Illinois. I was a bit worried about how Max would react to it after just being in Michigan for a few weeks but surprisingly he adapted well and had an awesome time!!

We visited my aunt and uncle who I haven't seen in 17 years (WOW) and got to meet my awesome 14 year old cousin and we all had a blast. We spent alot of time talking and getting to know eachother and reminiscing about our family that we have in common.  It was really nice for me to be with family and talk to family who wasn't involved in all the " drama ".   

We just got back today, actually.  Our trip was a smooth ride other than Max getting carsick and christening uncle Aron's brand new 2 week old car (oops!!). 

We spent a lot of time eating out, playing games and watching movies. We had a great time. Saturday we went to a cookout and Max had a huge yard to play in. He wore himself out but had a ball! I watched my boyfriend and cousin play random sports, did a photo shoot with my cousin in a field (lol) and other random fun things. It was really a nice time :)


OH! I forgot to tell you about my severe weather experience( lol). 
So, here it is Sunday morning and Adam, my uncle and my cousin are getting ready to go see Star Trek.  Theres weather saying we will have some nasty stuff and oh look, a tornado watch.
If you know me at all you'd know that I'm TERRIFIED of tornadoes. So, yeah everyone was scaring me lol. So, anyway, everyone finally says it will be ok blah blah but of course I'm still nervous.  Okay so Max, my aunt and I head off to a close by restaurant not far from her house for a lunch together. I got an omelet that was absolutely yummy! (I looooove omelets. )   Ahem, anyways.. So everything was peachy till the sky started getting super dark.  I'm getting nervous obviously and my belly kinda queasy (anxiety isn't fun) because I'm worried about the weather.  So we finish and go up to pay and just as my aunt swipes the card the power goes out.
Awesome.
So, they talk about how to pay as other customers walk around and staff finds flashlights and says maybe it's not a great idea to go outside. Then, oh look, tornado sirens. I've NEVER heard a tornado siren before but I'm assured it was only a warning siren and that it doesn't mean a tornado is coming just to be on the watch and be cautious. 
OKie dokie. So we get out to the van and get home JUST as the rain starts to pour down and we are safely inside. Thankfully, there was no tornado just a fun little storm (as my aunt was right in saying we would't get one :P ). Still though, that's the closest i've ever been to something like a tornado is hearing the siren lol.

In other news, my main reason for coming home today is because Max had a doctors appointment and was FINALLY going to get assessed for PT tomorrow.  Well, I got a lovely call from the outpatient center that our Insurance in MI isn't active yet and I still have more stuff to take care of (oh, thanks SSA for telling me you had it covered -_-) soooo tomorrow I'll hopefully be taking care of that.  We are lucky that we've had so many opportunities for Max to be outside with other kids being both active and social or he'd be really regressing here physically.  


*** I want to take a moment to say God Bless everyone in OK who was effected by the horrible tornadoes. Especially the children who were lost in the school. I could rant about this but for now let's just pray for their devastated families. ***

I'm a Michigan-ian...Michiganer... Michigander? Anyway, I"m HERE!

I'm overdue for a post, I KNOW and i'm sorry!!!

Things have been soo busy the last few days.  So, our trip was a little longer than we expected but we got here and everyone was excited. Adam's friends stayed to help unpack then left the next morning after goodbyes.  Max had so much fun Saturday night meeting his new cousins Lizzie, Tori and (big) Max, seeing his cousin Liam again as well as some aunts and uncles. Sunday he got to meet his other cousin Gabby and played the day away with her too. I've never seen Max have so much fun before being able to play with kids his age and being outside free to run and play.   

So today is/was Tuesday and WOW I got a lot done.   Now, know that I usually never leave the house (never USED to) so doing all these things today I was NOT ready for but glad I got it done.  So, I left the house around 10 with Adams mom and head to the post office and got my address changed as well as got some money orders. Now I had to stand for probably 10 minutes here, partly to fill out papers and partly waiting for the Postal worker to get off the phone. (I'll remind you.. standing is horrible for me.. drains me..) Next I asked Siri to lead us to the Social Security office. This office was in the city a bit in a really odd place that I wasn't expecting it to be. You know.. like back off some side road near a development. So, my Social Security Office experience was exciting. I grabbed my number and sat down and waited about 20 minutes until it was my turn. Finally after the lady called my number I told her that I needed a name change, to change our address and other information.  As the woman put in information she had asked me why I wasn't receiving spousal or surviving child benefits from Chris' death.  I explained to the woman that to my surprise NYS had told us we didn't qualify for anything at all, which surprised the woman. She did a little research and left me standing there (been standing about 10 minutes now and stood there while other impatiently waiting people stared back at me) for about 5 minutes and came back to tell me that we DID qualify for benefits from his death.  So, I then had to sit and wait about 5 minutes to be called to another area to do an application for the benefits.   After a half hour sitting and talking with that lady I found out Max qualified for the death benefit and a small monthly benefit for losing a parent.  WooHOoo! Who doesn't love good news?  Ok, finally done with SSA, Siri leads us to DHS(department of Human services...not DSS like in NYS) to make sure they knew Max's medicaid would still be in tact for Michigan.  I walked in and stood for probably 10 minutes at an empty desk waiting until someone else standing said they wouldnt return from lunch for an hour.  There's no way I'm standing here for that long. I head back to the car and say poo to DHS for today.  Oh. I forgot about the old lady. There was an old lady who asked us for a ride before we pulled into the parking lot there. We told her we weren't able to because we had to go in the building but after we left we did give her a ride down the road. Poor woman kept talking about how she needed money for this and that. She asked us to pray for her as we dropped her off, I hope she made it home safely.  Ok so back to our mission. Well, then we saw a greek place so we stopped there.  Adams mom talked about eating Lamb and I wasn't interested so I ate something that moo'd instead. (I know, go to a greek place and eat a burger, I'm no fun).  Ok lunch was done we were full and headed off to the BMV! (Yes, BMV not DMV because Michigan likes to be different). Stood in line for 5 minutes just to get a number. I was 44 and they were on 16...woooo for waiting. Once my number came up (and after watching seriously boring ads and photos flash across the tv screen overhead for 20 minutes) I went up and got my car registered.  50.00 cheaper than I expected YAY.  I'm walking out of the BMV all proud and excited and go next door to a place that offers super low car insurance. Wouldn't it be awesome to get lower insurance than what I'm paying? Right, ok!  Go in there and stand for 5 minutes giving information for them to tell me that they would be charging me 30.00 more than I'm paying now and I should just stick with Giecho. Alrighty. So we leave there and head to Aldi's.  Shop shop shop, checkout, load bags with food, load car with bags and we are both ready to collapse from weakness and pain.  ( And decided we aren't doing this without bringing a man or someone able to do the hard work so we don't kill ourselves).  Off to Walmart for more groceries and birthday cake (Happy Birthday Fred!!!!((Adams dad)) ). I went in alone to spare his mom's back a bit.  Shop shop shop, food, find adam shoes (Oh and i found Max some that fit over his braces SCORE!!!) checkout, load car,  YAY time to go home! But wait, I forgot McDonalds.  Now, let me tell you my child IS a bit spoiled but he's NOT a brat. He is a very picky eater and has some sensory issues so yes I buy him food that he will eat otherwise he won't. Yes I've tried the " Eat or go hungry " and he chooses go hungry each time and I'm not going to keep doing that to him. /End Rant.   So we head to McDonalds and pick up 10 packs of McDonald's apples because apples are the only fruit Max will eat (that and applesauce in the pouches) 10 packs for 5.00 isn't too bad. Saves me time cutting the apples and its about the price of buying a bag but wasting the cores ect.  And no he won't eat them when *I* cut them up.  Ok NOW we go home. YAY home. Put some stuff away, then one more grocery store to get some stuff on sale.  This time Adam, Max and I go in our newly registered/plated car.  Got that done, went home put stuff away.   Adam goes with his mom to Rite Aid and to get pizza.  We eat, then FINALLY I go for a short ride in my car.  Here's some background:  I haven't driven in 5 years.   My lisence was suspend because i got in an accident and never paid a ticket. Idk why. A lot happened between then and now. And I hadn't had a car between then and now. So I took a short drive and my intentions were to go to the car wash. Wel, I couldn't find it. And was nerved up so I wasn't going to keep looking. I got my test drive in and went home. 

so.. yeah there ya go lol. That was my eventful day. Any questions? :P 

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.

Model Babe!

Okay, so some of you may have noticed me talking about modeling or have seen Maxtyn's Modeling Page on facebook. No, I'm not entering him in pageants or spending insane amounts of money on profiles and modeling scams. I have listed with a Facebook page called Little Diamond Models. They match boutiques with kids that they want to model their products. They send us something say a hat, and we take photos for them of Max wearing the hat and we get to keep it. Its something fun to do since Max is so photogenic and likes to have his picture taken, and we get something to keep afterwards!  We have won a couple photo contests and got some free stuff in return. It's pretty fun and gives me something to do! :)

Currently, I am also trying to find a new hobby. I'd love to find something I can make that isn't too expensive or something I don't have to buy a sewing machine for! It would be cool to make something that I can donate or maybe sell on the side. If you have any ideas I would LOVE suggestions! ;)

Hope everyone has a wonderful week!

I did it!

Even though Max hardly talks yet ( Aside from momma, daddy,  & yayaya) He says " I did it ".  I'm sure this comes from a mixture of Dora's " we did it " dance, and his therapists saying " you did it! "   When he thinks he does something amazing he starts clapping and says " I did it ".  It's adorable that he knows to be proud of himself.   He also has learned recently what Open and close mean.  He has been opening and closing all the cupboards, closet doors, and not to mention the fridge  (Lol). Well, a few minutes ago he was on the opposite side of the kitchen of a cupboard he left open and i told him to close the door. He then looked around until he saw the opened cupboard and crawled over to it to close it.  Of course he then looked at me and clapped for himself. :)   I have such a smart little boy! 

Get to know Maxtyn.

I just wanted to give those who don't know Maxtyn's history, a little post about him. :)

Maxtyn Daymein was born 5 weeks early, on January 21st, 2010.  His lungs weren't fully developed and he ended up getting sick. Thankfully, he got to go home after 5 weeks in Children's Hospital of Buffalo. They were amazing there! It was a very emotional and difficult experience, but I know that it has made me stronger!
Max has an unnamed Neuro- Muscular disease that runs in our family.  This simply means that he gets tired out easier than other babies and his physical development is a bit delayed.  He is very bright and right where he is supposed to be mentally and socially for his age. :)

Today, Max is almost 15 months old.  He sits up on his own, crawls all over the place, gets into everything and is a very happy baby!  He receives OT and PT twice a week and is getting stronger every day.  Right now he is working on standing. I can't wait until he can walk! ( Yes, I know I will regret saying that.. LOL )

Now that you know a bit more about his history, I'm sure my posts will make a little more sense. :) Thanks for reading!

- Amy

Good Morning :)

Good Morning everyone :)

Had a very bright eyed baby boy this morning! He slept in till 9, which is late for him.  Normally, he is up at 7, but I think he enjoyed the cuddle time with mommy. ;) 

I realized today that the little things Max does amazes me. It's so cool to see the new things learns every day. 

While sitting in the living room this morning, a car beeped from outside our apartment and caught his attention.

I asked him " What was that!?" and he then started looking around with an adorable curious face. 

It's great to see how curious and aware of his surroundings he is. :) 

Welcome :)

Welcome everyone :)
Just want to say thank you for following my blog and I hope everyone enjoys it!
I will start my first entry tomorrow.
If anyone has any suggestions or fun ideas please feel free to share!

- Amy <3