Hey guys I apologize for being away for the last few months, and I am hoping this Hiatus is ending now. It has been a busy couple of months and before I knew it, it was November already…Well in the last few months Ella has started school at Headstart and has been sick a lot (I have heard its normal for the 1st year of school) She has so far missed probably 10+ days of school in 2 months yay…not. I also started working as a teaching aide at a local school so that is exciting. I just hope that I don’t get sick because hey I have some news 🙂
I’m Pregnant 🙂
Yep, we found out in August and currently I am 15 weeks. We did have the harmony test done due to Ella having Down Syndrome. Test results came back that this little one has only a 1 in 10,000 chance of having any chromosomal abnormalities, and this little one is also a GIRL 🙂 We announced on Halloween cause hey why not lol.
A day after we got the confirmation about the pregnancy, I was in a car accident and put enough damage on the truck that we couldn’t afford to fix it. I was fine and baby was fine, we were just without a 2nd vehicle for a while. I ended up breaking down and getting a mini van….told myself I would never get a mini van but here I am. It is a very nice vehicle and was really nice when we traveled to Missouri a couple of weeks ago. We went to drop of some furniture and visit my sister in law
Well that is all for now I have lots to do today and not a lot of time to do it. Talk to y’all soon
Please don’t take it for granted, and by it I mean a normal life.
I will say it again, please don’t take it for granted. As it is summer time I see a lot of posts about vacation or kids spending the night with family. I will say this I am happy for y’all but I am also a little jealous. We don’t get the opportunity to have family getaways or let Ella go spend time with family.
Last year we were invited to go on a week long vacation with my dad. Unfortunately we had to decline because we couldn’t take a nurse with us. We would’ve loved to gone but we wouldn’t have been able to enjoy our vacation we would’ve been sleep deprived.
Last night my brother in law was talking about having Ella having a slumber party at his place when he gets his own place with his fiance. Unfortunately that cant happen since she needs all her machines and it isn’t the easiest thing if you don’t know how to work them.
Our family loves the outdoors and we would love to take Ella to go camping under the stars. She would absolutely love it, but she needs her machines to sleep, and you don’t have electricity in the middle of nowhere.
Do Not Take This Wrong, Please
Please don’t get me wrong I WOULD NOT CHANGE ELLA FOR ANYTHING IN THIS WORLD!!! I just wish we could do things and take her places,is that wrong? I want to take her on a vacation at some point to who knows Disney or something like that. But we will probably have to wait till she gets older to go anywhere so that she understands she needs her machines. And maybe we will be able to lessen the load (have less machines, or at least more compact)
For the love of laundry and all that is dirty…I Hate Laundry Mats. Okay well that is partially true as I hate having to drive to do laundry. Since our dryer kicked the bucket we have been spending a lot of time at the laundry mat. Mostly, like right now, at 10 o’clock at night. But hey whatever usually at this time its peaceful and quiet and I can sit and read a book or something but man this laundry mat is busier then usual. Oh hey guess what Spin Cycle WOOOHOOO…not…
Anyways I doubt you want to hear about my times spent at the laundry mat I mean how boring is that haha.
Excited Mama Post
So who wants to hear some EXCITING news??? ELLA GOT ACCEPTED TO HEADSTART!!!!! This mama is super proud of her little girl she will be starting full time this fall while still going her 2 half days of her center based classroom, which awesomely enough is right down the hall from headstart.
Besides that she had her pre op appointment today. Next week she goes under again this time for her teeth. Which lets face it are not the greatest, between her sensory issues and having brittle teeth she has at least 3 broken ones up front alone. She wont leaver her moth open enough for anyone to see the back ones but that’s what this surgery will help with too. I have a feeling she is gonna be miserable. I mean when my husband got his done he was. Oh and how in the world are we gonna be able to take care of them if brushing her teeth can sometimes be problem in itself. All I know is next week is gonna be FUN…pray for t ohis mama :/
Dear Disney Junior, as I sit here watching Doc Mcstuffins for the upteen billionth time, I come to the realization this is such an amazing show, especially when you have a medically fragile child. Okay my daughter is only three so she doesn’t fully understand the whole concept. Though i know when she is older it will probably help her out more then you realize. Now that you even came up with the Toy Hospital concept it makes it even better. My daughter Ella is going to be having yet another surgery in a few weeks. Even though its just dental surgery to get some teeth removed but still she’ll be put under. She Has Down Syndrome, AVSD (Repaired), and sleep apnea, as a mom I’m always scared when she gets put under.
How the show can help and is helping children.
Okay so back to the show, I love the episode that has Niki Nickleson going to the ER for the 1st time. It also shows how different machines work and how they can help show what is wrong. I mean in the one episode where Willow Whiskers needs a C.A.T scan Doc even tells her what it means. It also helps showing how Stuffy was scared of the ambulance, yet that emt was so helpful and kind. How awesome is that. It will help kids understand that its okay to be scared, but the doctors, nurses, emts and other medical personnel are there to help you. I can go on and on about how that show shows kids that even though hospitals and doctors look scary they are there to help you feel better
Ella has been in the hospital multiple times, has had multiple surgeries and still goes to so many Dr. Appointments. She will probably have more in her future, but as a little kid she doesn’t understand. Though I am so thankful for this show growing up watching this show I know she will learn that its okay. So again thank you Disney Junior and creator Chris Nee for this show, because this show is such a blessing in our lives. And the lives of families of medically fragile children.
Yes yes I know that saying is said all the time but i’m not kidding. Today I woke up after barely sleeping last night due to my chronic back pain and Ella was awake. I went and grabbed her to lay her down beside me while my husband got ready for work. He rarely works on a Monday so I didn’t think anything about it. Well it wasn’t until after he left that I remembered that I was supposed to go to a meeting for Ella. I felt like such an idiot, as we only have the one vehicle I called everyone I could think of to get a ride. It was a no go. So I had to call up the case manager for Early Intervention and said we would have to reschedule.
Am I gonna be a good advocate for her?
With Ella having a disability there is so much I need to know that I just cannot remember it all. I mean pretty soon we will have to have a meeting to talk about her IEP for preschool. When you have a typically developing child, yeah you gotta know if its a good school but with a special needs child there is SO much more. From IEP to nursing to making sure they are going to treat her right, not like the stories you hear. I just don’t know how to learn about it all. My mama brain feels like I am in college again.
Thankfully our local Down Syndrome group has a lending library so I borrowed a few books about IEPs and Wrights Law. All of them were written by Paul Wright who is an attorney who specializes in children with special needs rights. I almost got to go to a seminar he was having but wasn’t able to attend then. So much I need to learn and it feels like no time at all to learn it. Ella turns 3 in April which is when Early Intervention ends. So she has to go into preschool to continue to get services. I don’t want to put her on the wrong track in life so I guess its time to crack open the books and start learning.
When you are pregnant with your first child it can be scary enough, but when that child you are carrying has something “wrong” with them makes it even worse.
Now I put the word “wrong” in quotes because there is nothing wrong with my daughter, but that’s how the doctors acted. I was about 12 weeks pregnant with my daughter when I got the phone call (yes a phone call) that the MaterniT21 showed that the baby that I was carrying, My baby, would be born with Trisomy 21 or in other words Down Syndrome. They then set up the appointment to discuss our “options”. Now what is the first thing you think of when you hear the words options while you are pregnant…yep that was the first option they gave us. Abortion, amnio or proceed with the pregnancy like normal. Of course we chose to proceed like normal, and they proceeded to tell us all the things that could go wrong.
Things that COULD go wrong
Not amounting to much
The list goes on and on. See the thing is most doctors only see what could go wrong. They never tell you what could go right.
They never tell you that that little one will be the best thing that ever came into your life. That their smile is contagious and can light up a room and take all your cares away. They don’t tell you of the family you gain when having a child with Down Syndrome. The support you get when things go wrong and the joy you share when things go right. You become part of a community that no matter what they have your back. You have questions don’t be afraid to ask cause well hey they have been through it. They don’t tell what beautiful, fun, and loving human beings they can be.
When you go into that appointment don’t dwell on what the doctors tell you could go wrong…Just remember all the things that could and WILL go right.