Things have been crazy. Monster is two and a half now. He just got his new pair of glasses yesterday and they are adorable. Things are going better, he is getting stronger but still is at about a 4 month olds ability, and getting closer to being able to hold his head up.
His glasses are a bright blue and the prescription is a lot weaker so that means he is getting better with his vision.
Since we moved he has been rolling over a ton and scooting all over. My one goal for him by his 3rd birthday is to be able to hold his head up and sit up. That would make the world a much easier place. Going to restaurants and shopping is difficult for a over 3 foot tall 2.5 year old that is a 4month old in reality.

As for me. This has been super stressful, and I am a stress eater. I have lost weight…. gained weight…… lost weight….gained weight. It sucks. Monster has been having really bad crying fits at night, sometimes they last 2 hours and its him holding his breath, screaming, kicking and it is awesome. So by morning I am exhausted and done.
I started doing weight watchers, I have done it before but now it’s harder. With a child with an unknown disability its harder to do things, people stare and ask questions like oh is he exhausted? Ummm nope kids freaking wide awake and hyper, sorry he cant hold his head up and he isn’t being a complete freaking terror like a typical kid his age. Thankfully my friends boys are playing t ball right down the street and we can walk down to the park and get out a little bit…
I just wish I had more time for me some times. I hate giving him up for a few hours and when I do it seems like its when I am sick or completely wore out where I have to sleep, so its pointless and cant workout anyways.

Day by day by day

I have never understood why some people do the things they do.  My son is delayed and no one knows whats wrong. I never drank while pregnant and I have never done drugs my entire life. Yet still something is wrong.

  I have a friend who is pregnant with her second, and when she came over last week she was drinking, not only while she was here but when she walked in, so she was also drinking and driving while 20 weeks pregnant.

ARE YOU FUCKING KIDDING ME. 

 That was all I could think. I did my best while pregnant, a planned one, to make sure I was healthy so my child could be. And what do You do??? Fuck up right in front of me! I couldn’t believe it, yes please sit in front of me drink and tell me you have weed in your purse, and give birth to your perfectly normal unplanned child in 20 weeks.

On the bright side.

 We will be moving in about a moth! yay! nice house quite neighborhood. Lets just hope the dogs can be good

So normally if someone is watching my child they at least let me know that they are sick or not feeling well. Well not last weekend. MIL was sick and she didn’t say a word about it until about 4 days later when she was already on meds, yippee. So now I am stuck dealing with a sick Monster and Hubby. WONDERFUL. So yea Monster donest want to sleep and Hubbs needs me to take care of him, so its super wonderful that I dont have all the time in the world to sit back and have a second to myself, because I would then really feel like shit, I dont feel good either but I have noone to take care of me or help out with anything.

So we went to genetics and neurology at the childrens hospital friday. All the blood work is back and still normal. And neuro wants to run a EEG to make sure everything is fine. Everyone is still confused on what it could be. So the weekend was supposed to be for cleaning the house and getting shit more ready for moving. But out of the blue I need to do hair. Hair for someone who is my best friend, who I haver not seen since since like september or really even talked to. So my feeling is that I am apparently only a friend when she needs her hair done. Yay me. Makes me feel so wonderful. So wonderful that I bend over backward to make sure if she needed something that I would try to make sure I could be there for her. I have gone to the doctor with her because she didnt want to go alone, on valentines day. I have helped get through get leaving her husband. When she was pregnant and after she had the boys. I would help feed them, change them our any thing that she needed. We gave her our old flat screen TV when we got a new one. Ahhhh so aggravating. I love her and want nothing more than for her to be happy, and I am not a fan of her choices in life but that does not mean she is not any less of a friend and I don’t judge her. So she was 5 hours of my Saturday, bleaching 2 times and coloring. And we had already done taxes and that was an hour. So bye bye Saturday. And I couldn’t even do the other girls hair. Sadness. We also picked up our wonderfully happy child brought him home and I had to come back home from getting diner because he was screaming his head off because he didnt get fed one of his bottles. Yippy. Come home feed him and go back and get food. Sunday drop off monster, look at my sisters new car and head home to start this work on the house. Bla house work. Oh I cannot wait to move. Hopefully the one house left that we like will not be sold. We have seen so many fly off the market lately. So hopefully soon before I lose it!

So when we go pregnant I kinda thought it was our child…. Right???…. Well I feel like the rest of the family kinda thinks he is theirs.

Honestly grandparents come on. I know you guys are super excited and all but I don’t really care about all the things you are going to do at your house for the KIDS…. odd because there is only one and there is a good chance that there will only always be one on the one side. We want another but I don’t want to take anything away from Monster because if this isn’t something that he is going to grow out of I want to focus on him and give him what he needs. We are talking about when we move in a few months that we could start trying again if everything seems RIGHT and we can afford to after getting into the other house. My SIL has always said she didn’t EVER want kids, oddly enough as soon as we were pregnant, and got a lil more attention that usual, she was all over wanting to get pregnant. I remember being 5 months and her saying ” I’m not shopping for clothes cause if I get pregnant then I will just have to buy more” SERIOUSLY??

I could never see her as a mom. BIL just got a new job and it pays good, and she isn’t working anymore because of a disability (stupid work “injury” decision). I was always going to be a stay at home mom, we never wanted to have someone else raise our son. MIL retired to stay at home and help me. Apparently I need help at my one and only job of taking care of my son. I DONT and I NEVER did. He is our son and if we were not ready then we would have waited longer. My SIL said about a month ago that people should be thankful to have someone to help them. She is right. I am thankful. But here is the thing, I do things the way that i want them to be done.

Lets start with a normal day where Monster goes over while we go grocery shopping. I pack diapers, wipes, FOOD, and what ever else he might need. So when we go to pick him up I expect that when she says he ate that he ate what I packed….. NOPE. I pack a veg. and a spoon and ” Oh I fed him an apple sauce” or ” I fed him a food pack it was :insert fruit combo”. I don’t mind that she has her own food at her house, I mean there MIGHT be a time where we are gone longer that we thought we would be. But don’t do as you please. She couldn’t wait for him to have teeth so she could give Him McDonald’s fries.. Seriously? Why in the fucking hell would I want to expose my child to junk food so early? I have always struggled with my weight, nothing too bad but its not enjoyable, so why would I want to give my child shit that he doesn’t need?

MIL has a friend in town for a week or so a month ago. She even agreed with DH and myself about its not what GMA wants its what mom and dad want. OMG thank you thank you thank you. You cant just do as you please. You had a chance with your children to do as you please, and I have heard the stories of GMAs doing things you didn’t like. So again… IF you give him something on the *no no* list you will not see Him until I forget you gave it to him. So its going to be a while.

I love my Monster and the fact that he has a disability / delay I am even more of a protective Momma. We only want the best and I know they do to, but think before you do and feed, or ask first.

The other side of the GMAs is just as bad in her own ways. How much freaking clothes does one child need? and then complain that she never sees him in any of it. Well there are only so may days, and I don’t want him wearing extremely nice clothes to school. Example, today he got paint on his jam / comfy / gym pants. I don’t want to possibly ruin something so cute they and I would be sad about. Oh yea his nails are fine stop cutting them! You give him ingrowns and the get all red and yucky with pus. And his nose is fine, yes he is kinda congested, he probably just screamed the whole way here, yes he still does it just not as much as he used to. Oh yea and his head is dry because he rubs it on me after I lotion it, I DO take care of him trust me. Yes my sister has eczema and he does too but they cannot be treated the same, so lay off.

On a good note, Daddy brushed Monsters teeth last night for the first time. I get all excited when he does things for the first time because he is always scared that he is going to do something wrong or he will choke or hurt him. I have to remind him that I was not programmed to do everything and I has to do everything the first time once. Hubby is a great dad and I am glad that he is getting more comfy doing things too, and I know Monster is happy too cause he gets tired of Momma every once in a while.

I am the mother of the most amazing little boy. I am blessed to have a wonderful husband and to be able to be a stay at home mother. Everyone says that the first year is hard but unless you have gone through what we have, you have no idea, and I know that its not even as bad as some mothers that I have met.

So my son is 15 months old. For the last 11 months we have been running tests to figure out what is wrong with him. To date he cannot hold his head up, sit up, track objects with his eyes, reach for things….. most things that a child his age would have been doing …. 11 months ago.

So we have a few doctors we go to . We have Genetics, Neurology, Pedi Eye Dr , a Delayed Development Specialist, Physical Therapy, Occupational Therapy and of course his regular Pediatrician. He also attends a early intervention school for children with disabilities and behavioral issues.

Okay so Monster was a planned child, I wasn’t drinking, I was already taking prenatal vitamins, I went to the Dr to get an all around check up with blood work and exam . We were ready. Thankfully we got pregnant right away.

So at 13 weeks I went to my appointment for my scan to see if everything was good, they took all the measurements and everything looked fine it was the “text book perfect pregnancy”, oh yea and we were having a BOY.

fast forward to the birth. Everything was going wonderful. No signs of anything. All the scans showed our healthy little man. So was induced because this little monster was very comfy. He was perfect, he broke is collar bone coming out and everyone in the room heard the snap. But you couldn’t even tell that anything was wrong, he still moved his arms around and wiggled all over.

So after the healing of the collar bone everything started to kinda show face. He still wasn’t holding his head up and he wasn’t making eye contact and reaching for toys.

So let me just say that when you are pregnant and everything is showing a wonderful and healthy growing baby, you never think that anything could be wrong. You have no way to prepare for anything, and you surely don’t ever think that you will end up with a child with any problem, big or small.

So here comes the referrals to the big Dr’s and physical therapy. Oh yea and they tell me my sons brain might not be growing, his head is too small.

JESUS FUCKING CHRIST are you seriously going to tell a mother that about her 3-4 month old?

CT scan and xrays here we come! oh yea everything is fine :-) wonderful. thanks for scaring the shit out of me.

So out first pedi was horrific. she flat out told me that ” babies don’t just do things on their own you do actually have to do things with them not just lay them there.” I HATED her.

So genetics has done 2 MRIs and more blood work than I have ever had done in my life. Currently there is a huge test out to test for a ton of things, and its like the last blood test she can think to run, so if it comes back normal 2 urine test and she is at the end. He has been diagnosed with Hypotonia , floppy baby syndrome, basically low muscle tone.

Neuro hasn’t done shit. they saw him 8 months ago and nothing….

Eye Dr says that his eyes are fine he should be able to see things more in the next few months.

P.T. and O.T. work with him weekly and are seeing slow improvements, but improvements and something.

He started school when he was 11 months and he loves it, 2 days a week 2 hours a day. They are wonderful, art projects, field trips, music time, and they also have P.T. and O.T. there along with an O.T. that works with eating therapy. When he was evaluated he was at the level of a 3 month old, he was 11 months.

During this whole process we have found true friends. The 2 people closest to my husband and me have completely stopping coming around and talking to us. My best friend was the maid of honor at my wedding and my husbands was his, well kinda supposed to be, but wasn’t sure is he was going to make it because of work, and his work isn’t like most, so it wasn’t just OH I NEED THIS DAY OFF AND BOOM ! DONE!

These 2 people were family to us, and we would have done, and probably still would, do anything to help them. We always had before a child so why not after? But where were they when we needed someone? No where to be found and being selfish.