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Three year olds say some of the funniest things

My three year old has my imagination. She is always someone different.

Yesterday, she was Doc McStuffins and I was her patient.

“You have a bleed on your cheek. When your cheek has a bleed on it, I’ll get some cheek paste for the bleed.”

She got sick one day, I’m guessing from drinking too much soy milk before her meal. She threw up in the restaurant and asked my mom “what is that? That’s not my favorite thing.”

I guess it’s good to know that throwing up isn’t her favorite.

Another time, I got glutened. We went out to eat when it kicked in (almost exactly 12 hours later) and I was sitting in the restaurant crying unable to move or sit still. She had to run over and inform the waitress mommy was sick, then she had to tell every single customer that we walked past that mommy was sick.

She has also announced to all of Walmart that “that milk is diarrhea” or “that juice is diarrhea”

She is learning and she now verifying with me if food is “diarrhea” or safe and is doing a good job avoiding “diarrhea’ foods.

 

What are some of the funnier things your young kids have said?

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US Birthrate and Fertility Rates Dropping, Many Possible Reasons

I have been reading about the US’s declining birthrate along with the older generation reaching retirement age. The people they quoted acted worried about a smaller working population vs larger retired, disabled and sick/aging population. They named everything from women now choosing to put off having kids leading to a decline in fertility rates to Planned Parenthood and similar resources that help women plan out and prevent pregnancies. Paul Ryan even went as far as saying he did his part and had three kids.

What are the main reasons that keep coming up in discussions where choosing to either put off or avoid having kids is the subject?

The top reasons seem to be lack of good, affordable healthcare- even a lot of people working full time with degrees seem to have trouble affording the costs of paying insurance, deductibles and copays. Even if you’re lucky enough to have a decent insurance, the US has a higher mortality rate for both pregnant women and babies than a lot of other developed countries.

The costs associated with having kids also plays a huge role- it costs over 200k to raise a child and most of the time daycare for one child alone will cost over 20k a year. I know we were looking into daycares locally (low cost of living area) and decided not to because it would literally eat my whole paycheck. Daycares are also getting to be less trustable. They offer assistance, but also now allow random women to put in to run day cares out of their homes.  It’s frequently on the news about daycare providers harming kids, having drug paraphernalia and dangerous items (knives etc) out in easy reach and occasionally, they have gone as far as having children die in their care. This happens at the shady lower cost as well as higher, upper scale daycares so can you really trust daycares?

Maternity pay/leave is another higher up on the chart- most places do not pay adequately nor do they seem to give long enough leave to make it worth using. If you get pregnant while working in a lot of different places, if you already have temporary disability insurance, and have been working for over a year you can get paid 6 week leave. If you work less than a year and are not paying into it prior to getting pregnant, you’re out of luck unless the store also has maternity leave benefits mapped out and you’re eligible.

High costs of rent and cost of living in general– Couple that with the next on the list, stagnant and low incomes and you have large numbers of people who can barely pay back their astronomical loans while paying all other bills and you have the recipe for holding off on having kids. The costs of living continue to climb while wages are staying the same overall.

Women now have the option to have kids or not– this is a huge factor I’m sure. Women now have the options of birth control, they can go to college and focus on their career instead of getting married and staying home and not every women who grows up is forced by society to have kids (or be outcast).

But with the positive, negative can come in as well- women have choices now and there have been studies linking later maternal age can lead to infertility and other complications.

There have also been suggestions that fertility rates are dropping some maybe due to environment and others may be due to the later start dates for starting families and having kids but there have been studies that as a whole, rates are dropping.

There are many different opinions, ideas and reasons that people are holding off on having kids and that may not be a bad thing. Our population right now is aging, but after that generation leaves, won’t it start to even out again? Gen X started having less kids than the boomers did and now we’re down to a birthrate of 1.8 as of 2016. It is no longer needed to have a lot of kids to ensure the survival of your family’s genetics and it’s no longer that cheap to raise kids.

What reasons do you think I have missed?

 

 

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About 1P36 Deletion- Why Do I Even Have To Know?

              Why Do I Even Know What 1P36 Deletion Syndrome Is?

              I never thought we would be traveling down this path. I had severe Pre-Eclampsia at 28 weeks and had my baby weighing only 1lb 11.5ozs and 13 inches long. She was on a feeding tube, oxygen and heart monitor. She stayed in the NICU almost 9 months. She had Retinopathy of Prematurity (where her retinas were detaching from her eyeball) and required laser eye surgery. She also had five holes in her heart- PDA, ASD and three muscular VSDs. We had to have two of the holes (PDA and ASD) closed, luckily they were able to close them through a catherization instead of open heart. She also had feeding troubles after being on oxygen for so long, so the last of her surgeries was getting a g-tube placed in her stomach.

              She came home at eight and a half months old still on a nasal cannula and heart monitor that beeped every time she kicked her feet. She also still had the development of a newborn since she had been lying in a crib most of her life. For the first few months of having her home, we had a home nurse come to the house daily to help us out. I was testing the day time nurses to see if I could seek employment again whhile they took care of her during the day. The first outing we had as a family resulted in her getting a cold. A simple cold shouldn’t be that bad, right? It wasn’t RSV or anything more than a simple cold- and it landed her back in the PICU and on life support so I knew we couldn’t place her in day care, the nursing fell through and I had to cancel it so I decided to stay home with her instead.

              We were nervous for the first few months of taking her out of her crib too long, so we would keep her in the crib except during play time and feedings, baths and spending some time with her. I regret that to this day, but if her cannula came out of her nose for any length of time, she’d start turning blue. We finally figured out how to place her main oxygen tank so it could stretch all through the house and we were able to take her downstairs to be with us during the day, luckily that didn’t last long and around 15 months, she finally had strong enough lungs to get rid of the tube. By that time, she was finally starting to be able to lift her head and crawl during belly time. By three, she started walking without assistance but by that time, we had a misdiagnosis of Cerebral Palsy and she had started Pre-K. She had finished early intervention (birth to three in this state) and she loved Pre-School. Her first year, she didn’t talk and had to be carried. By the end of the year, she was walking holding the teacher’s hand and starting to say words. By four, she was walking on her own, by five she was walking and doing more talking. She started Kindergarten and entered a special class with an IEP. She had a tablet device to help her communicate. Now at seven, they’re putting her in second grade. She’s able to jump about an inch off the ground, walk up and down stairs, run slowly and speak in sentences (short sentences), her hole have fully closed up and she has a normal heart now. She still can’t write but she can read and is starting to be able to do basic math, she understands more than she’s able to communicate back to us.

So, what is 1P36 Deletion Syndrome?

              The first chromosome is the largest chromosome. It may be the most important to development. It is separated into two parts (1P and 1Q) 1P is the shorter arm and 1Q is the longer arm. The whole chromosome contains about 249 million DNA base pairs. 1P36 Deletion syndrome is when a part of DNA is deleted from the 1P arm at the 36 base. My daughter’s particular is 1P36.12-1P36.22. Different areas cause different symptoms but the syndrome has some common symptoms-

1. Low muscle tone (hypotonia)

2. Seizures

3. Growth and feeding issues

4. Developmental delays

5. Birth defects like cleft lip, pallet, heart defects or brain defects

6. Cardiomyopathy (enlarged heart)

7. Hearing loss

8. Vision problems

9. Thyroid problems (mainly hypo but this condition seems to put them at higher risk)

10. Behavior problems (self harm, throwing objects, hitting, melt downs, screaming etc)

              Those are the more common problems. There are some that are more rare- early puberty, undecended testes in boys at birth, scoliosis, neuroblastoma (extremely rare)

              Some of the other random common yet uncommon symptoms include shaking while excited and biting on their hands. My daughter has chew marks all over her hands, we try giving her chewies to use instead but she still has litte blisters. I thought it was anxiety for a long time, but learned it’s a symptom of the 1P36 Deletion Syndrome.

How common is 1P36 Deletion Syndrome and how does it happen?

It’s rare, but one of the more common genetic disorders. It affects 1 in 5-10,000. It’s not completely known how many since there are a lot of kids who go undiagnosed.

It can be passed down but it’s more common to be a random occurrence with no family history.

When it is genetic, the parents usually have what is called a balanced translocation. A balanced translocation is when part of the gene didn’t attach in the proper location and connected to a different gene. Since the gene is there, the carrier shows no symptoms and doesn’t have the syndrome- but they have a 50% chance of any offspring inheriting the deletion.

What’s the prognosis?

              Most children with 1P live into adulthood and with symptoms controlled, can live average lifespans. Some of the complications can take their lives early, but the prognosis isn’t bad. Our geneticist told us our daughter has a 50/50 chance of needing a care taker or living a normal life. There isn’t enough known yet as to the full severity.

              Our case isn’t as extreme as some of the cases I have run across in the forums and support groups I have joined, but it’s not the least extreme. She speaks in basic sentences and her speech seems to improve as her (normal developing) two year old sister’s does. She is fully potty trained, including at night but she has trouble tolerating loud noises and while her gross motor skills are improving, her fine motor still need to catch up. We lucked out and the majority of her problems seem to be physical,(not mental) she developed no brain bleeds or defects and doesn’t have seizures. She did have the heart defects, but they were easily fixable and she speaks more than a few words now. No two cases of any disorder will be the same. There are online support websites available, a yearly conference that is held in late July or early August. The conference for 2018 is from July 26-28 in Houston, Texas.

              The major website is http://www.1p36dsa.org. They have resources, information about the disorder, information for families a store and opportunities to get involved in spreading awareness or just making donations. They are a nonprofit dedicated to education and awareness.

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Not sure if this is a fail or success

My girls and I decided to attempt bath bombs this afternoon. They had fun mixing and making a mess, they loved using one in the bath but they turned out nothing like they were supposed to. They crumble in my hand and I’m having to keep them in the mold until used. I think I know what I did wrong and we still have stuff for more, but would it be a success since they had fun or a fail since it didnt work right?

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This coming June I’m taking my first ever paid vacation from work

Since I’ll have a full week off, I have decided that the month of June I am going to try to do one post a day and come up with either 1 post or one article to submit to a magazine or blog every day through June.

Coming up with ideas shouldn’t be too difficult.

I have 11 more days in this month and I’ll be brainstorming topics (privately) and I’ll try to come up with 30 varied posts.

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I finally figured out the secret to a clean house

Lock the husband and kids out. Maybe all of us can go live somewhere else and just sleep on the beds.

I think that’s the only way I’ll keep my house clean for now…

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Rules of my home

No matter how old you are or who you are, nobody is to lick the cat

There will be no throwing of chairs or any other objects at the cat

The cat is to be pet on demand and fed every time someone goes into the kitchen. The cat food is FOR the cat, it is not meant for human consumption.

No licking windows

No licking walls

No licking anything

These are the rules for all whom enter my home, no exceptions- even the tiny people who live here.

I never thought I would have those rules until I had kids… I never even thought I would have to say “dont lick the cat.”

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A few things 30 year old me wishes 22 year old newly pregnant me had known.

I have had a total of three pregnancies- my first ended at 28 weeks with a partial abruption and severe pre-eclampisa. She was only 1lb 11.5ozs and 13 inches long and spent a total of 8 1/2 months in NICU. She’s now a small but healthy 7 year old. My second was relatively uncomplicated but we lost her. She was born at 36 weeks due to me going into a painless labor and I wasn’t allowed by the doctors to go into labor. She died of a condition called Anencephaly (absence of the skull) and lived for 3 hours after birth.

My third was totally complication free and she was born at 37 weeks (once again, due to the complications of my oldest) and was 7lbs11ozs and 21 inches long- they told us she would have been a 9-10lb baby if she was born term.

I had each baby at 23, 25 and 27 years, I’m 30 now so I have spent almost my full adult life being called “mommy.”

I read all the books, blogs and joined all the support forums I could find. What to Expect was my bible through my first pregnancy and through her early years but nothing could prepare me for the almost 9 months of hell I was in for after having my baby.

When I was 22 and newly married, I found out I was pregnant. I was young, naive and even though I knew it was a huge sacrifice, I had a glorified image of pregnancy and motherhood. I knew it wouldn’t be a walk in the park and that I wouldn’t have near the freedom I had before but I still imagined taking the baby to baby and me classes, taking her out in cute little outfits with friends (since most of mine, at that time were also pregnant or new mommies) and late night cuddles. I thought of play dates and hanging out with friends would simply end up taking place at kid friendly places instead of bars. I had no idea what the dark side of pregnancy involved. I had heard of conditions like Pre-Eclampsia but the thought never crossed my mind that it could happen to me.

I was asked the question “What would 30 year old me go back and tell newly pregnant 22 year old me?” so here are a few pieces of advice I wish I had listened to or received when I was pregnant, especially when I was pregnant with my two older.

  1. Take folic acid- lots of it. I didn’t realize how important it really was. I did make sure my pre-natals had it, but that was it. After dealing with Pre-E and losing another baby to Anencephaly, I joined a support group for people who lost babies to the disorder and that was when I read about folic acid and how vital it is to healthy pregnancies. I also learned about the MTHFR and after asking for a simple blood test, I found out I had a more severe form of the lesser mutation- which means my body only processes about 7% of the folic acid I eat.
  2. Swelling all over to the point where you do not look human IS NOT NORMAL. Don’t call Labor and delivery, go in to the ER to get checked- especially if swelling in the hands and face comes with headache and lightheadedness or any other sign of high blood pressure. Pre-Eclampsia is serious, but can be managed if it’s caught early on.
  3. Lay off the baby books- especially if you have a preemie- seriously, cut it out. If your baby doesn’t develop by the books (either advanced or behind) they will stress you out more than help- it’s nice to know what “normal” development is, but if you start playing comparisons, it will make you lose your mind.
  4. Go ahead and complain about the morning sickness, crampy feelings, bloated feeling, headaches, mood swings, exhaustion and everything else- being pregnant sucks and it’s ok to not enjoy the symptoms- it’s the end result we all want.
  5. Do not freak out after being given the epidural. It doesn’t make all feeling go away- just the pain.
  6. Enjoy the last little bit of freedom- the sleepless nights do not last long (be a few months, they WILL sleep through the night) but that small window of time in between feels like an eternity- and there will be times you will wake up freaked out in the middle of the night because your baby sighed and you thought they were choking- that is normal.

As of right now, those first three pieces of advice are the most important things I wish I had known. I know I could never know, but I feel that if I had known to start taking folic acid before we started trying, our middle daughter would be here with us- about to turn 5.

After my kids were born, there are things I wish I had known.

1. My social life would die. I always had an active social life from college on out- but between location differences between my friends, weeding out the bad influences and age differences between our kids, I have lost touch with most of my old friends. Lack of time tends to get in the way of meeting new people in similar situations (although, working moms with working husbands and busy schedules may not be the types I’d want to meet when it comes to play dates and getting kids together). It’s not bad losing social life- If your old friends were bad influences (into drinking/drugs/etc) but it does rub off on your kids as they get older and have a lower interest in being around other kids.

2. Don’t let your kid sleep in your bed with you. Even just one night. Our 7 year old fell out of her big girl bed two times in one night when she was 3. We allowed her to sleep with us that night. She’s now 7 and we still can’t get her out of our bed (we could, but she actually panics at the thought of sleeping alone). We know she’s spoiled, but fear and anxiety is real and is a real problem when part of a child’s special needs is that they have trouble communicating with others.

3. Having special needs kids changes how you interact with all areas of your life. I’d love to take her to parties and to movies- and sometimes she does great. Other times, we will spend the full night in the bathroom with me trying to calm her down. We do not know how she will react to any given social interaction and sensory overload is a real problem. It has taken me 30 years to know and handle my own issues (loud noises- mainly, loud crowds, she has the same)

I recently read about one business starting a sensory sensitive day and I’m going to have to try taking her. I want to get her around more “normal” developing children, but other special needs kids tend to get on well with her- either way, she’s starting to take interest in socializing so we need to nurture it.

 

I may create a continuation of this post when I think of more. I know there are probably a lot of things that have slipped my mind. What are some things you wish you had known when you were newly pregnant?

 

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You Know You’re A Parent When…

You and your husband are the only ones awake and you announce you need to potty.

You put the kids in bed hours ago but Disney/Nick Jr is still playing in the background

You have rules such as- 1. No licking the cat. 2. No licking the door. 3. No licking your sister and 4. No throwing objects at the cat.

You know the pain of stepping on a Shopkinz toy (hurts worse than a Lego)

You have to buy a new vacuum almost annually due to overuse.

Your shampooer is constantly out and running.

You have random stains in your mattress, mattress pad, couch and chairs- you’re not sure what they are but you know it’s food.

 

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Day 1- 21 Days of Happiness Challenge

Your task today is to start a gratitude journal.

You don’t have to have an actual, physical journal to start (although we all love a good excuse to pick up a fresh, empty notebook, don’t we?). It can be public or private, typed up or written down. You can use sticky notes and create an entire wall of things to be thankful for, or even share your thoughts on Facebook and encourage your friends to join you in the Happiness Challenge.

However you choose to participate, begin by writing down three things you are thankful for. 

  • Be as specific as possible,
  • don’t list the same thing twice,
  • and try not to take yourself too seriously!

And of course, if you enjoy and find benefit in this or any task from the challenge, consider choosing that as an ongoing habit in your life.

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1. I am thankful for my two beautiful daughters and my angel. I’m thankful I get to wake up to those two cute little faces and that I’m getting to watch them go from babies through their lives to developing their own interests, talents and personalities.

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2. I couldn’t be half the person I am right now without my husband. When I’m feeling too tired or am in too much pain, he’s pulling my half of the weight- and not complaining (much lol)

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3. My parents- They also help so much, especially while I’m getting stabilized on my thyroid meds and am working towards gaining as much of my health back. My mom is also a great person to go to when I need a reality check and she reads up on so much and helps. She also is taken seriously by specialists and teachers- which I’m still, I guess, too young looking to have happen. If I take her with me, they take me more seriously and will talk more than when I’m alone.