Developmental Delay?

delay

So today was baby girls major Developmental appointment.  This was one of the MOST important appointments we were excited about, since discharging from the hospital 3 months ago.  This appointment was the tell all.. to see how baby girl is growing and developing after being a micro preemie.

a micropreemie or micro preemie is defined as a baby that is under 1 3/4 pounds (between 700-800 grams) and is generally born before 26 weeks gestation, but most people prefer to loosen this term up to include any baby under 3 pounds (1500 grams) or under 29 weeks gestation.

Our baby girl was born 4 months early, making her gestational age only 24 weeks.  At a small 1 pound 8 oz., bleeding in her brain, holes in her heart, and on the ventilator… she had a rough start at life.  God gave those sweet nurses the love and strength they needed to use to fight with her/for her to save her precious life.

Once we discharged from the hospital when she was 4 months old, it was crazy how small and fragile she seemed at just 7 pounds.

These past 3 months at home I have worked with a team of people (from doctors, to therapist, to specialist) to give me ways I could help improve her strength/endurance/mobility and overall loosen her stiff muscles.  Is it a LOT more work than a regular/healthy newborn?  Yes! But is it so worth it? Yes!

So now that you have a little back story, the appointment today was testing her Gross motor skills(movement and coordination with legs, arms, and other large parts of the body), Visual Reception (being able to interpret the environment around you by processing information contained in visible light), Fine motor (the small muscles and how they coordinate together), Receptive language (the ability to understand information), and Expressive language (the ability to speak certain words to form a language). They used her adjusted age (making her only 4 months old at this test) to do this exam, and her results are amazing!

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She actually met her goals and surpassed them by one month on 3/5 categories! They gave me some more ideas on what to work on, when to start foods, and a lot of REALLY helpful handouts that I could see and some websites to utilize as well.

Thank you to for all of your amazing prayers for baby girl, and please continue them as we have a lot of developmental progress going to be happening in these next few months!

©2016 Sheridan Johnson @Journey with the Johnsons. All Rights Reserved.

 

43,800 minutes

1 month with the johnsons (1)

I can’t believe baby girl has been with us for an entire month already! To say it’s been a whirlwind, is an understatement.

She seemed so fragile when we were taking her home from the NICU, not really knowing what to expect, especially in all that she has been through in her short 4 months of life in the hospital.  Now she seems so much stronger, more vocal, more awake then ever, and makes people fall in love with her, after meeting her for the first time!

She still likes to give us a scare, when she chokes on her saliva.. and the nurse mode comes out of me, and I am like:

  1. Sit her up if she is laying down
  2. Pat her back to help the secretions flow down
  3. Suction, Suction, Suction to give her help, so she won’t have to try to swallow a ton of saliva at one time
  4. Reassure her that everything is going to be okay.. just hearing our voice makes her know she is in good hands.
  5. Love on her once she has loosened her body, and isn’t so stiff any more, and let her know she can finally relax.

She has had 4 family visits, 5 doctor visits, and 2 visits from CPS.  It’s crazy to me that we have literally spent hundreds(actually over a thousand) miles driving her just in the last month, and taking her to all of her destinations, and we wouldn’t trade it for the world.  Our biggest concern is the unknown future for baby girl. She is supposed to be on the track for adoption.. but the way the legal worker was talking to me on Tuesday after her visit with her parents, sounded to me like he is trying to get mom and dad to better their life, to get baby girl back.  Either way, I know God has already planned out her future, and will place her where and when she needs to be, and that Shane and I shouldn’t worry.. that we should just follow His lead and trust in Him. Sometimes, it’s just hard.

She has transitioned SO well to basically our entire family.  She loves all of our voices, and loves when the kids (little man and Brielle) are playing and running around the house, because she will try to turn her head and look for where the sound is coming from.   I can’t wait to watch their relationships grow and nourish over these next few months.

She has had all 3 of her major appointments this week, and let me just give you a little update.. Her eyes have not changed in the last month (which is great news considering if you read my post here to see what she started out with).  Her pulmonologist appointment went great as well, he doesn’t see anything wrong with her breathing, and very happy she doesn’t have a cough and he did suggest that we get her synergis shots this flu/cold season because if she develops RSV (which you can read about here if you don’t know much about it), she will most likely end up in the hospital on the ventilator, because she isn’t strong enough to fight off an infection. Her developmental specialist actually didn’t assess her this appointment, because her adjusted age (the time she was supposed to be full term) is only 1 month old, so we have to wait until November (she will then be adjusted to 4 months old) to do a full assessment.  The nurse did an amazing job giving me tips and exercises to do (to prevent her from getting stiff joints) and ways to just help her grow (and we also left with 5 cans of formula.. that nurse was seriously amazing!!).  I have already started the exercises, and I can’t wait to watch her soar in the next few months.

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We are so very blessed to be able to love on her, and take care of her, and can’t wait to see how much she grows!

©2016 Sheridan Johnson @Journey with the Johnsons. All Rights Reserved.

 

 

Exploring your own weakness

In the last and final section of this series of the 30 days towards connected parenting, Rachel talks about the importance of exploring your own weakness.

I think for Shane and I, we both have different weaknesses that we had to address, and face, head-on.

Sometimes there are things in life, or a marriage that are hard and difficult to talk about, so most people would just avoid them, instead of putting them out there and facing them.  That can only last for so long, and I am glad that we were able to discuss this with each other, and the impact it has on our children.

A couple of our examples, were that Shane has a weakness for saying “yes” to anyone/anything.  He didn’t realize the impact of his generosity and kindness to others was having on our family.  He wasn’t spending as much time at home, he was putting us after others, and he didn’t even realize that sometimes he can say “no” to people, and not be afraid to hurt their feelings.  He had to work on finding a happy medium that worked best for him and for our family, that we could both agree on.

Me, on the other hand, have the tendency to support every.single.organization/friend/charity, by donating big or small, and while I used to be able to do that without even blinking an eye because we were making so much  more money, I didn’t realize that I continued to do it, even when I dramatically cut my hours to be a stay at home with Brielle during the week and only work weekends. Spending money is my weakness, and even while it was helping others, it was hurting our family financially so we came up a game plan of how much is “ok” to spend each month, and if I pick up extra shifts and we have extra, that it’s ok to help out as much as possible!

Both situations are completely different, but recognizing them and taking ownership of our own actions, can only help us in our future communicate better, and not be so  afraid to address the weaknesses that lie within us!

This 30 day parenting definitely took me longer than 30 days to complete, but I am SO happy that we took the time/energy/effort into this, and I am LOVING the outcome!

 

 

©2016 Sheridan Johnson @Journey with the Johnsons. All Rights Reserved.

 

 

Reactive vs. proactive parenting-section 12

In this section, Rachel discusses the difference between reactive vs. proactive parenting.

It is so important for us to try to react to our children in a loving and kind way.  I for one, am the first one to admit that I overreact a lot of times when Brielle is misbehaving/doing something that she shouldn’t be doing.

After reading this article a couple of months ago, I am really trying to understand more of where/why she is acting the way she is, instead of reacting so fast to the situation at hand.  This has changed how she responds dramatically and it has actually help to prevent a LOT of meltdowns.

I have been working on saying  more phrases like “what is making you so mad” or “how can mommy help you figure this out” so she doesn’t become frustrated which usually ends in a meltdown.

There are still so many times that Shane and I jump the gun and say something out of anger/little sleep/busyness, but that doesn’t make it ok and I know it does hurt her feelings in the end.

What I have noticed is that it’s ok to say “I’m sorry, mommy only said that because I was upset with you and I will try to work on not yelling the next time you do that”.  She is learning so much and putting everything together, and I don’t want her to remember this phase in her little life, as always being in trouble or redirected to do something else.

We can always be better, and in the end, that’s the most important thing is that we continue to work to be better parents, better partners and always have the same goals in the end!

Have you said something negative to your child, and immediately thought out a different scenario where things could’ve ended differently?  Let me know! I would love to connect on this topic!ABM_1452390605