What is Raynaud's Disease

 It means (essentially, when she is cold or stressed her extremities turn red, purple, blue or white. When she is hot she turns red.) I have seen her every shade, and have mistaken this for sunburn as well.

 Raynaud’s Disease or Primary Raynaud’s exists when there does not appear to be an underlying disorder. The terms Raynaud’s Phenomenon, Raynaud’s Syndrome or Secondary Raynaud’s are used when there is an underlying disorder.

 It is extremely rare for a child to have this. It is not deadly or life threatening as Primary Raynaud's. It is however, extremely uncomfortable for her. It acts up in the pool, even in the heat of the summer, when she gets out of the bath, outside in the winter, or even on a cold day.

 Think when you where a child. You most likely have played out in the snow for a very long time. Your fingers where red, toes where frozen (not literally) and when you went back in, it hurt for a minute. That is how she feels, a lot. She is too big for wearable blankets, and kicks off her blankets and socks at night. Her feet turn blue. I hate the summer for her. Air conditioned buildings flare her up. Also, as I learned on Sunday night, an epi-pen can flare her up. The combo of the stress of the allergic reaction, and the epi-pen, made her toes turn white.

 I am trying to learn how I can prevent flare ups for her. So far there really isn't much on it, other than scary warnings about secondary Raynauds... which could mean an autoimmune disease. I don't want to think about that. Hubby and I spoke with her doctor yesterday about the matter, and he said we don't have anything to worry about. It is still scary though.

 I know that even in the summer I will have to carry a pair of pants and a sweater or sweatshirt for her, depending on where we go. It is not that difficult to deal with, but I feel like just another thing to add to her plate.

Thanks for reading!
-Mama H.

Stirring up emotions.

 Yep. That pretty much sums this day up. In ALL HONESTY, I have cocooned myself into this happy little bubble, so to speak. Our journey with M's ASD, has been just that for so long. OUR JOURNEY. I didn't have early intervention, no therapy as our evaluation wont be until June now, and school hopefully starts for her on her 3rd Birthday, so she will hopefully start it then (in May).

 I had my appointment with the child study team this morning to address my concerns, in all honesty it was a pointless meeting in my opinion, but I see why it is necessary. A lot of this is pregnancy hormones, but its becoming real. Too real, for today at least.

 I keep looking at the paper work, and I just want to cry. I look at the list of my concerns (2 pages), seeing it all on paper, in one place, breaks my heart. Was this something I have done? There is a lot of media around "bullies" right now, and well to any "normal" person she would look like a bad kid. {My Daughter isn't giving me a rough time, she is HAVING a rough time.} On the radio a lot of calls where going in, how it's the parents fault... Now this has NOTHING to do with bullying or anything BUT it got me thinking. I am sorry, but it feels to me like this is my fault. What if it is something I have done/haven't done, did/didn't do, said/ didn't say, that made her this way? My rational mind is like, no there IS  something wrong, but my irrational mind (she gets a little crazy) wants to cry and scream at the top of my lungs, that I am a horrible Mom.

 I liked my little bubble of me and my family. I feel like that is how it should be. I should get to enjoy my family, and don't get me wrong, I do. I love how exciting my life is because of my kids! However, I have a little social anxiety, my current career path, and well this, has kind of forced me to be more of a people person lately. My comfort zone, for far too long has been my own home. I am not embarrassed by my Daughter, but it is EASIER to stick to a routine here.

 This will pass (lol probably by the time I press publish), but I needed to get this out. I have a friend who is amazing and works with special needs children, and will probably be working with M soon, and I know I can call her (or any of my other Mommy/non-mommy friends for that matter) but I just can't. Sounds crazy. I know. I just like the idea of writing it and leaving it.

 Now about Therapy and School. This is hard for me. She is my angel. She is perfect to me. I think the idea of other people giving me their opinions of her is what scares me the most. Good or bad, I don't want to hear it. I want her to have all the help she needs, but at the same time, I want to protect her. I wanted to be the one to give her that help. I am her Mom. I am the one who should be able to understand her. That is the part that makes me jealous as well. Jeremy has a better understanding with her. Well I guess it's more of she allows him in her space more.

 I know Jeremy loves all his babies, and I know he has a special relationship with each one, but it is the relationship between him and her that makes me jealous. He gets to snuggle with M on a daily basis, she fixates on him when he's home. I know a lot of that has to do with his working schedule, but selfishly I am jealous. I want that too. I remember the day... yep the day... she stopped nursing. It was that day she stopped needing ME. She needs me for Mommy things (thankfully), but she doesn't need me in the way W and J need their Mommy. I am lucky to get some hugs and kisses from her, when she wants, and I cherish those moments, and long for them.

 Don't get me wrong, everyday isn't bad. She has good days, and The Lord knows, I've had better... Thank you 101.5 for the spiral into bad mama drama... LMAO.  I am excited to "get back out there" so to speak. I know it's not good to be in our own bubble. I guess for the past year or more it's been MY coping mechanism. My new me thing is working out. I am not over doing it because I am pregnant, but I like the way I feel! I haven't been able to say that in a while... Even pregnant, I like the person I am on the inside and out. I want to be strong for my kids... inside and out. I WILL be strong... inside and out!

 Thanks for reading!

Mama H.

Off day.

 Everyone is off today. W had an asthma attack, a pretty big one. I decided to keep him home today. J is not quite himself. He has two top molars coming in. At one point he had a bottom tooth coming in AS WELL!  But the molars a giving him a rough time! The have been coming in since the end of January! Now just the middle and back of each tooth need to pop. His face gets swollen a bit and Motrin helps but I feel bad for the little guy. M is having a silent day. My uncle can get her to say a few thing (lol they play yell @ each other) but even than she is not as spunky as normal. I think yesterday and the time change has her "off".

I love having all my babies home today though! I wish I had the patience for home schooling!

It's been a while.

***** Warning small vent. Keep scrolling to pass it*****

 I stopped posting after just one too many, "There's nothing wrong with her, you just need to give her time". Well time for what? Please, let me tell you, it's not ok! Read my posts, but don't send me messages about how you think I am crazy, she is going through a phase , or that doctors are too quick to had out diagnosis'! Guess what! My pediatrician didn't give her the diagnosis, a neuro-developmentalist at one of the top Children's hospitals in the state, did! I fought with MYSELF over this! What mother wants to admit there is something "wrong" with their baby?  I don't want pity or apologies, and I don't need your diagnosis. We have that, not just once, but twice over now. I just want support, weather you've been where I am or just following my posts. Understand, there is no ONE diagnosis of autism.

***** end vent *****

 Yesterday was hard for me. The days we go for follow up are nerve wracking! My biggest fear (and hope) is that, our doctor tells me she is fine. That this is "normal". I am not sure if all ASD Mom's do this, or have done this, but even though I KNOW BETTER, I compare my M to other children. Thankfully she is very High Fuctioning, meaning she has the potential to learn to cope with her challenges and succeed later in life. Anyway, I see other children, who are non-functioning/non-verbal and feel guilty. I do feel crazy in that moment. Than I remember our "bad days". They happen frequently, but I am not sure if I am just so used to them it has become my "normal" or if we are having more "good days". 

 It brings tears to my eyes thinking, "I am just used to it". I am just used to not understanding "what's wrong", because quite frankly she can't explain it to me! It's a guessing game! Today she said her chest hurt I said show me, she couldn't, her chest probably wasn't what hurt her, she just knew that word. She does know most body parts, but with autism and her sensory issues, it in all honesty could have been that her shirt didn't feel right, it was too loud ( she did express that with covering her ears and saying ow), but I just don't know. 

 For M things like touch, clothing, sound, light, sometimes even darkness, brushing her hair, etc, HURT. But at the same time she has quirks, like she needs to wear a hat and jacket no matter what! (OCD). I will explain in detail her quirks and thing in another post, another time, just giving an example.

 Her diagnosis' have not changed. She will hopefully be evaluated buy the child study team at our local elementary school for their special education preschool program. I was told that it is up to them. Everyone I have spoken to says there is no reason they wouldn't accept her, but it again is just another thing for me to worry about. It is what I do. I worry. ABOUT EVERYTHING. I compare not only my kids to others, but myself as a mom, wife, woman in general, to other women, among other things. It is something I NEED TO WORK ON.  

 In W news, he is needing a little incentive at school. He is getting bored in all honesty. He just doesn't want to work that hard... with out a reward. SOO Jeremy and I have come up with a point system, and shared it with his teacher. IT'S WORKING!!!! This week he has to earn at least 5 points to get Rita's Italian Ice. If that is what it takes so be it. I love that his teacher and I have great communication. I get overwhelmed with helping him sometimes (we both have ADD) and my Aunt is fantastic with him. But his teacher has helped me come up with a system that works for us. Turns out, he is more than likely pushing my buttons, because it is that time of year. He is over school, over homework, and well he is a typical 6 year old LOL. So now if he doesn't by the time the timer goes off (15 minutes) he has to do his work during play time. It is fair, he really does not even get 15 minutes of work and I know he knows what he's supposed to be doing. His teacher said it may take two weeks but he so far with the timer, he likes it. It's sort of a challenge. Can he beat the timer. If I know he is truly working I will let him go over, but so far he's been done before. DON'T GET ME WRONG, it has only been two days. I can say though, I never had homework in K, and was not able to read what he is reading until first/second grade (and he is behind!!!)!

 He gets intervention, mostly because he can't focus, but that could very well be his age. I have noticed it at home but his teacher and doctor said not to worry too much until first grade. Don't get me wrong, I am NOT for medicating my children. Especially if their only problem is focusing.

 In J news, he is "the baby". Jeremy, W and M treat him like that still. He can talk, he just choses not to because he knows someone will get him what he wants. LOL. It is "cute", but I finally have hubs on board with having him use his words. We have also noticed, he has picked up on some of M's habits. Like screaming. It is not the same as M. He is not doing it for the same reasons, he does it for typical one year old stuff. I really don't know how to put it in words, but it's not autism. Catch my drift.

 He is however, so laid back. Nothing seems to phase him. He (for the most part) is patient with M. J and her have their moments and I can't help but laugh. They are close, yet will have "squabbles" over things like toys, a chair... yes a chair. One that they BOTH can fit on but neither wants to share, and when it's all said and done, he will give her a hug (not always reciprocated or wanted), but he is her calm, just like W is her happy.

 M is so lucky to have two great fellas in her life. I have no worries about them not bonding, they already have such a great one. I am excited to find out what #4 is. I am sure everyone reading this is from my Facebook, so you all already know. We wont find out for a while, and if we do ... we aren't telling :P . W wants another brother AND sister. He wants a brother named Rock Star. Wouldn't that be interesting! For a sister, it keeps changing, he liked Emma Jo, now he likes Katy Grace, and there were others. All girls he probably knows at school. Except Emma Jo, he heard me through that out there.

 M just yesterday out of no where goes I want a sister. Hasn't mentioned it since. If you ask her you get all kinds of answers, some having nothing to do with the baby in Mommy's belly. J doesn't get it yet. He may not. We saw a baby at CSH today and I made the connection. I said, "see baby, there's a baby in mama's belly", and he looked at my belly puzzled a few times like, really? Where? It was so cute!!!!! He does rub my belly sometimes, so maybe in his own way he knows.

 I am 18 weeks today. All is good, baby's hear rate is in the 150's 160's. Not sure when the gender scan will be yet. Due to insurance things are different this time. I can honestly say I miss my Midwives. :(

 Sorry for the long read. I don't know when and how often my posts will be. For my sanity I need to write things down here.

As always, thanks for reading,

Mama H.