LittleK's journey- Never say never

At 8:06am on November 26, 2013, weighing 6lbs7oz and 19in long(which I thought was HUGE), LittleK came into this world screaming. She came via repeat c-section at 39 weeks after 13 LONG weeks of bed rest.

Never did we ever think we'd go on the journey that we are on. Never did we think we'd have 3 therapists coming into our house 2-4 times a month. Never did we think we'd have to take our baby for a hip x-ray, vision screening, or a hearing test before she was old enough to tell us she couldn't see well or hear. Never did we think we'd qualify for Early Childhood Intervention(ECI). Never did we think we'd be doing research on possible Sensory Processing Disorder. Never did we think we'd have to drive to another town for an appointment with a developmental pediatrician. We have done or will do in the near future all of those things.

Never say never.

This started back when LitteK was about 6 months old. I went to look back at BigK's 6 month post to compare sizes, nothing else. However, I read the whole post and noticed that BigK was sitting unassisted and was getting up on all 4s and rocking at 6 months. LittleK wasn't doing any of that. It was then that I realized that LittleK wasn't doing much of anything that "normal" 6 months do. She was only rolling from tummy to back, but not back to tummy. She wasn't bearing weight on her legs. She wasn't babbling. I talked to her pedi, but he wasn't concerned and said he wouldn't think anything about it until 9 months. So I didn't think more about it.

However, over those 3 months, nothing seemed to change except she did finally start to sit unassisted. At 8 months old.

What she was doing that was really concerning was rocking, banging her head(she no longer does this), doing a one handed clap, swinging her arm back and forth. Loud noises didn't bother her. The first time she saw fireworks, I expected tears and screaming. I was wrong. She rocked and blinked every time one would pop. She would startle very easily at little things- C would sneeze and she'd go into hysterics. 

Other people started noticing that she wasn't doing things on a "normal" time line. They started mentioning it to me. It was then that I realized that it wasn't just me being a paranoid mom, maybe something really was wrong. I called ECI to set up an evaluation. I mean it's free so why not. If nothing was wrong, they'd be able to ease my mind. If something was wrong, they'd be able to help us. We got a sitter for BigK as they told us the appointment could take as long as 3 hours. We were not expecting the results we were given. Our sweet baby was 44-100% delayed in 4 of the 5 areas the assessed. This put our 9 month old on the level of a 3-5 month old in terms of development. That means she was 4-6 months behind where she should have been. We qualified for ECI. They told us she would start receiving occupational therapy(OT) 4x/month and Specialized Skills Training(SST) 2x/month with speech therapy(ST) to be added later. This news turned my world upside down. I'm pretty sure I went through every stage of grief and so many emotions. There are days that I still cry. I avoid certain posts on a mom forum that I'm a part of because it's like a slap in the face. Never did I ever think one of my children would need extra help from someone other than C and me.

Never say never.

We started therapy in September. It started slow so that we could get to know the therapists, so the could get to know us, so LittleK could get used to them. She had only been around a hand full of people that weren't family. [I am a SAHM at the moment, and with the exception of a few months of daycare, the only other place she goes is church.] To say there were some tears would be an understatement. LittleK would scream from the time our OT walked in the door to the time she left. It has only been recently that she smiles at the OT. When it came to SST, she didn't cry, but she didn't do much either. It took several visits before she would smile, or make noise, or even make eye contact.

Our goal with OT was for LittleK to start crawling by one. Not only did we reach that goal, but we did it early! On October 25, one day shy of 11 months old, she crawled for the first time! At first it was very slow and her left leg lagged behind, but she was crawling! The next time our OT came over, she cried tears of joy and told me that that was why she does what she does. In September, we weren't sure when this day would come.

Finally, in early November, she finally decided to bear weight on her legs and stand with assistance!

And just a few days later, she was pulling herself up to standing!

Sometime just after the new year, she started cruising along the furniture. She can now cruise all the way around the table, all along the couch, and can sometimes go from one object to another as long as she's got one hand on something the whole time.

One of our goals for SST was interactive play such as peek-a-boo, PattyCake, etc. In February, she finally started playing peek-a-boo on a very regular basis, and she would initiate it too!

In both OT and SST we are now working on fine motor skills such as simple puzzles, stacking, giving objects, and putting objects in and pulling them out. She's got pulling out down pat. She's working on giving- most of the time she'll act like she'll give it to you, but as soon as it touches your hand, she'll take it away.

In ST we are working on very simple sounds. Most of her vocalizations are hums and "ahhh" sounds. She doesn't have certain sounds for objects. She doesn't call us mama and dada. She hardly has any consonant sounds. We are working on a few simple sign language signs such as more, mommy, daddy, and milk.

Our newest accomplishment: clapping and blowing kisses! Sometimes she misses her mouth and her "kisses" come from her eye or head or ear, but she'll do it on command.

She has come so far in just a few months. Not only are C and I noticing, but so are other people. However, she still has a long way to go, but I know we are doing everything we can and getting the best help we can.

Never think your children won't have issues(I pray they won't, but life throws us curve balls). Yes, we all want our children to be "perfect" but the definition of that word can change for the "normal" use. To us LittleK is perfect despite her setbacks, despite the looks and thoughts of other people who don't know her or her background. Never don't get help if you think something is wrong. Never go against your mother's instinct, no matter what your doctor says. 

Never say never.


Molly Young said...

I have a one year old and this year has been a little crazy. I can only imagine how you must feel, with hiccups in the road. Your attitude and live towards your daughter is so wonderful. she is very lucky to have you as her momma. Yay, for progress!!

Janet Boebert said...

Oh you strong, strong woman! I remember the days of not wanting to talk to some of my friends with the typical babies - because my daughter would never be on their level... My daughter was born with Down Syndrome and she has been the biggest blessing I've ever been given (well, besides grace, thanking God every single day for grace...). And I'm sure, that somewhere in my life, I probably said 'never'. I am so glad I chanced on your post - I don't always write about my daughter - but if you want and have time - visit my blog, I have a tab labelled Down Syndrome with a list of posts... I'm visiting from Monday's Musings.

By the way - she's 22 going on 23 and SUCH a rapscallion! Love and blessings - Janet

Tricia Cook said...

You have beautiful girls and y'all are fabulous parents!

D'Anna said...
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D'Anna said...

Thanks for posting and allowing us into your journey! I look forward to reading updates and seeing how Little K progresses! You're making great decisions as a mommy!

Anonymous said...

Thanks for sharing your journey. Blessings --so good to hear the words of a strong mama. The pictures of little K are lovely!

gentlejoy said...

I am so sorry for the pain and uncertainty, and disappointments you all are going through. WHAT a precious little one....and what special parents she has who are working with her. We have a son who was born w/ severe medical problems and it was hard, hard, hard....and exhausting...........but God is faithful and our son is so precious and doing quite well now. You are right, we never know what we will have to go through.....and I am so glad we can trust God to see us through. Thank you for loving your daughter through all of this. May God bless your family in this journey.