Thursday, July 6, 2017

Rachel and Haley's last day of 2nd grade!!!

Rachel and Haley's last day of second grade was on June 2nd.  They both had a good school year in their 2nd grade life skills class.

Here is a little update on both Haley & Rachel:

Haley - Haley is now talking!!!  She is saying dog, outside, eat, more, ball and NO.  I know she is saying a couple of other words, but I can't remember which ones as I am typing this.  We are so proud of her.  Haley gets speech therapy 2 times a week as well as occupational therapy.  Haley is still working on potty training, which will continue to be a long road but I have faith that she will learn/understand how to use the potty correctly.  It just takes a lot of time for my girls.  Haley loves her hearing aids and wears them well.  Haley loves dogs, but we don't plan to get one anytime soon.  Haley has been recently diagnosed with generalized anxiety disorder.  She get anxious if her schedule gets changed or we go somewhere she is not familiar.  Also noises (vacuum, mower, etc) make her anxious.  She is blind and hard of hearing so that makes things worse for her.  She is typically a happy loving sweet girl.  She loves to be held, give hugs and gets concerned when her baby brother cries.  She is almost 8 years old and still wears 5T clothing. She is our petite sweetie. 

Haley 1st day and last day of school comparison

Rachel - Rachel continues to be our challenging girl!!!  She is a sweet girl, but oh so stubborn and persistent.  Rachel is still not talking despite having the cochlear implant.  We think that Rachel does in fact have autism.  Though she loves to be around people and loves to get into peoples stuff.  Rachel doesn't have any boundaries which is a challenge when we are around others.  Rachel is working on potty training as well, but she is fighting against it.  So not sure when she will get it, but we continue to work on it with her.  Rachel gets occupational therapy and physical therapy 2 times a week.  Rachel wears AFO braces to help her walk better.  She can walk without them, but she does tend to fall easily.  She has right sided weakness.  Rachel still relies on her g-tube for all her nutrition as she still won't swallow food.  She loves to taste and chew food, but she continues to spit it out.  I have NOT been able to find a therapist to help her learn to swallow food.  I am loosing hope that she will ever eat normally.  The therapist we have had just have not been able to help her.  She has had the g-tube for so long now.  Rachel has a hard time sleeping.  She gets up at least once in the night.  We have to give her medicine to help her sleep.  Rachel is also on a behavior medicine to help control her behaviors.  She tends to have outbursts and fits easily.  Rachel is very challenging but she can be sweet and loving.  She likes to play with her baby doll.  She likes to play with my hair and put it into ponytails.  She is a daddy's girl and she loves to snuggle with him.  Rachel is an average sized almost 8 year old.  She is skinny though.

Rachel 1st and last day of school comparison
Both Rachel and Haley are going to summer school this summer.  They love school and the routine of school helps them in so many ways.  The first day of 3rd grade will be on August 28th!

Rachel and Haley will turn 8 years old on August 4th!!!


  1. Wow! It sounds like you are doing everything you can to help your dear children reach their full potential. Hopefully you are able to take care of you as well.

  2. My, how the girls have grown! That's wonderful that Haley is talking. Maybe Rachel will somehow follow her lead. You two are the perfect parents for these challenging but adorable girls. I like how you are patient and accepting of the delay in milestones- they will do things in their own time. No timetable for life is set in stone. Glad they are doing well despite the obstacles both physical and emotional. Love is the best medicine, along with and time and the right help too !

  3. You don't know me, but I have been reading your blog for quite some time. I wanted to pass along some information from another blog that I think may be of some benefit in your struggles with Rachel and her oral feeding issues.
    Hope this helps!
    Marci from Iowa

  4. I have followed your blog ever since I read your story in the NY Times, many years ago when the girls were in the NICU. I love reading your updates, and think you are a great mom. My kids have had their challenges: ADHD, behavior problems, learning problems, psychological problems, anxiety, depression, social delays, and we have had many years of therapies. They are now in their teens, and are finally getting easier. Parenting is an adventure, and I admire how you take it one day at a time. You have a beautiful family!


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