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Wednesday, April 30, 2014

Updates & Props to Special Needs Moms

It's been awhile since I've blogged, and I have a few updates to share.  With this pregnancy, they found 2 calcium deposits at my 20 week ultrasound.  One in one of the heart chambers, another in the stomach.  They also couldn't see his mouth good.  They sent me to a specialist, because a white calcium deposit in the heart is the only visible marker for Downs Syndrome.  Since I never opt for blood work or additional testing, this hadn't been ruled out yet.  I was surprised to have anything come up, because we knew we weren't carriers of 1p36.  I guess it never crossed my mind this baby could have something else.  I saw the ultrasound specialist at IMC and they were not at all concerned about the deposit in the heart.  Whew.  His lips were also fine as well as everything else, but the calcium deposit in the liver, they aren't sure about.  They aren't worried, but they also don't know what it is.  At first they thought gall stones, but not sure.  I go back on Friday to see if it's grown or even gone away.  I hope it's gone, whatever it is.  I don't need anymore stresses with this pregnancy!

I'm now 28 weeks 2 days, in my final trimester.  While that is reassuring and exciting, it also seems so far away yet.  I have been having a really hard time breathing lately, feeling dizzy and light headed and not able to stand up for long.  I am able to do most my regular chores, but I'm so uncomfortable now that it's not fun.  When I bend over I get sharp pains in my lower abdomen, so I'm trying to take it easy.  Ha.  Besides being tired of course and having reflux/heartburn (lovely) I am having a lot of Braxton hicks.  Not painful, but the tightening of my stomach makes it harder to breathe.  Sierra jumps on me a lot so my stomach is almost always sore.  Oh, the joys of being pregnant with toddlers!  What I didn't really expect with this pregnancy, was how at 6 months I am having a really hard time carrying Carter.  I am pretty strong and I've been carrying him his whole life, but his 38+ lbs of weight almost throws me off balance.  I am going to try and get help from neighbors and family with lifting him into his wheelchair to and from school, and to bed at night.  Even giving him a bath is a big chore, because my huge belly doesn't allow me to bend over much or get too close to the tub.  I have about 3 more months of growth, and I don't know how I am going to do it.  With daddy gone more now too it's hard.  I am bigger with this pregnancy, already weighing what I did when I had Sierra.  I have gained about 13-14 lbs, so I am trying to watch my eating more.

I have been discouraged lately with finding respite for Carter.  We found a company that was happy to help us, but they don't have a lot of locations or employees.  They sent one out for us to interview, and she was just a little too young for me to comfortable with.  I have another company coming out this Friday to meet with us and see if anything will work.  I am hoping they have a trained employee that can take Carter out of the home for 4-6 hrs, 4 days a week during the summer.  That would give me enough of a break and help when the baby comes.  Cross your fingers they have someone for us!  It's frustrating to have the funds but most companies say he is too young or has too many needs.  Carter is having a sleep study on Friday to see if he still needs his bi pap, and we are weaning him off another medicine.  I'm all for making our lives less complicated if he doesn't need it anymore.  He's doing great in preschool and has one more month until summer.  Sierra just turned 2 last week and had a Minnie Mouse birthday party.  She is in the 70-75%  for height, weight and head.  

We had a fun Easter with three egg hunts.  We also have started buying things for baby #3, and we like the name Keaton Thomas or Braxton Thomas.  Life is hectic and busy as usual, but we are trying to take it one day at a time.

Just one other thing I've been thinking about lately.  I am always amazed at special needs moms and what they are capable of handling and doing.  I had an aunt once tell me how it was a bit easier having her special needs kid last, because her older kids could help or took care of themselves for the most part.  It got me thinking about the families that had their special needs kid first, and how scary that must have been.  Not only are you adjusting to being a new parent, but you have this kid you are trying to figure out what is wrong with them, and then coping with the different life you've been given.  The first part you just have them to take care of, but then you have the momentous decision of having more children.  With the second child you usually feel somewhat experienced, but when you have a special needs kid first, it's a whole new experience.  For me, it was like being a new mom for the first time again.  Because here I had this 'normal' kid doing all these things I wasn't used to.  And usually the oldest can get to the point where they can help with other kids, or at least dress/entertain themselves, etc.  But not when your oldest is a special needs kid.  Sierra calls Carter baby often, because to her he is younger.  He can't bathe or dress himself, he is still in diapers, he relies on us for food and medicine and transportation.  It definitely throws a kink into things, and then say you go for a third kid.  Now you have basically a baby and a toddler, while dealing with pregnancy.  I feel like I am going to have two babies and one toddler.  No idea how I will ever be able to get around by myself with three kids.  Sierra runs away in stores and won't stay in a cart, and Carter is only good for so long.  I don't know if this makes any sense, but I wanted to throw a big shout out to all those special needs families, especially those that had their little special child first.  Such a momentous, on going struggle to take care of everyone.

2 comments:

  1. So I'm reading these oldest to newest so sorry for any repeat stuff I write. I totally think you moms that have your special needs child first much be so harder and scary and even more overwhelming. My heart goes out to all of you. I don't know if I would have had the strength to have more. You really do have more work than I could imagine as my older to have been so much help. But I feel where she was my last my other kids did get thrown on the back burner for several years as I only focused on her and they were just there I can't go back and fix it but it was easier and is easier having their help. You moms inspire me in that you have chose to have more babies and my heart and prayers go out to you for all the harder work you go through in bringing other spirits into the world. You truly are super heroes. You truly will be blessed for all of the hard work you r doing. Your little family is beautiful!!

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  2. Jenny, I have a dear friend who has 4 kids, the youngest being her special needs child. Her perspective is different from mine, but she has to focus so much on him that her older ones are often left to their own devices. So I can understand how either way is so very hard. I've struggled with Carter being the oldest mostly because it means having 3 in diapers, and another kid to carry around. Thank you for your sweet comments! They mean a lot to me.

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