Triplet Princes and a Princess

Triplet Princes and a Princess

Our journey to hearing with Cormac while living our life with triplet boys and a baby girl.

Friday, August 5, 2016

The Life of Calleigh

I am not sure when I even last updated this blog but so much has changed in the last year I donn't even know where to start.

Calleigh completed Kindergarten at St. Rose and had an amazing but super challenging year.  It was the best decision we made for her at the time and she learned so much and did her best socially.  She benefited from all the positive roll models in her class.  Most of all she benefited from the amazing staff who really went above and beyond for her.  It became evident over the course of the school year Calleigh needed more help than was available at St. Rose.  It physically hurts me to know she can no longer go to St. Rose.  The amount of love she was surrounded by was immeasurable.  Having her brothers near by helped her tremendously.  Love, apparently, isn't enough.

We have struggled with a proper plan for Calleigh because with all her medical diagnosis she never had a diagnosis for school other than development delay.  The newest medical diagnosis is epilepsy.  She had two seizures.  One in January and one in February.  She doesn't have a typical seizure.  Instead she stops breathing and turns blue.  In January I had to perform CPR on her to get her back.  It happened in front of the boys are I can't even type this without crying.  To say it was traumatic in an understatement.  She had a full neurological work up and it was determined she was having seizure like activity all day long and it peaked at night and when she was extra tired.  After the February incident she was medicated and has been seizure free since.  She takes medicine three times a day.  Her repeat EEG showed tremendous improvement with the medication.

We were hopeful when the seizure activity was brought down it might help with her other issues.  Particularly, her sensory issues or when she just loses it for what appears to us to be really nothing.  We thought if your brain is constantly misfiring when it's back on track things could change.  This has not been the case.

Calleigh needs access to ABA therapy.  You cannot get that without the proper diagnosis which is Autism.  I have always said she has many autistic traits but no doctor ever daignosed her with Autism.  She was even seen by a developmental pediatrician when she was about 5 who wrote in her report she was not autistic but possibly ADHD.  I took her word for it but always had my doubts.  We were to follow up with her in 6 months. In the six months the doctor stopped practicing medicine and no one took over her practice.  The wait time to see a neuro deveopmental pediatrician is on average at least a year.  We have been on three waiting lists since Calleigh was 6 years olds.  We were finally seen this past week and Calleigh was diagnosed as Autistic and ADHD.  I am not surprised at all and somewhat relieved because this means we can get her the help she truly needs.  Many have said they don't believe it because she is so social and so verbal.  But Calleigh is social on Calleigh's terms.  Calleigh is affectionate on Calleigh's terms.  All is right in the world if it's on Calleigh's terms.  But life cannot be led only on Calleigh's terms.  When it isn't it is truly the most difficult things to handle in the world.  The doctor said language is her strong trait and the fact we have had her doing OT, PT and ST since six months old has truly helped her.  The only missing piece was the ABA therapy.  (The guilt I have over this is ridiculous)

She struggles tremendously with unexpected change, sensory issues and how to react in those situations.  For example, if I told her Frank was picking her up from school but I showed up instead she would have an epic meltdown even though she was happy to see me she couldn't process it because in her head she was waiting on Frank all day.  Another example (the one that seems to get me the most upset) is when she is so excited about something or wants something badly.  When she gets to do it or we buy it for her she winds up saying "I hate it"  or "I dont want it" and throwing the gift or telling the person she wants to see to go away.  She can't even process being happy.  It overwhelms her and she breaks down.  After a while she gets it and loves it or whoever.  But it is so sad to me. It's also hard when people give her gifts because she reacts terribly but I can honestly say she truly doesn't mean it.  You should see her on Christmas morning.  We don't even give her the gifts.  We let her do on her own time.  After each gift she runs around the living room and into her room and shuts the door and doesn't come back out for a few minutes.  We totally ignore her the whole time because it is what she needs to do to process it.

We are pretty good at anticipating what can set her off but it's a hard way to live and walk around when you just aren't sure.  People are NOT understanding at all for the most part and they think she is just a brat.  I don't feel the need to explain myself but it's tough.  Who would understand when she is screaming and losing her mind because there is a hair on her hand?  It's hard for me to understand but I know she hates it.  It's also tough on the boys.  They should be able to go an enjoy themselves without Calleigh freaking out.  One of the hardest lessons Frank and I have learned is we can't do everything as a family.  It is impossible.  But what we have also learned is that fact is hardest on US not on HER.  I still cry over it because I want her to have the same fun, happy memories as the boys.  We have learned to divide and conquer and just do it.

I meet with school next week to come up with the appropriate plan for her for next year.  I am confident we will find it and she will do great.  I also have hope once we get her the skills she needs she can maybe one day return to St. Rose with minimal support.  Maybe not.  But I never give up.  Remember, I have a deaf kid who was mainstreamed at 3 years old when NOBODY thought that was possible.  We made it possible and he continues to excel at school so I believe anything is possible.

She also when to a new specialist in Ohio for the treatment of her Hirshpring's Disease.  Calleigh was born with Hirshprung's which means the cells in your colon that make you have a bowel movement are not all functioning.  Basically, she couldn't poop if she wanted to.  When she was 3 says old they placed a colostomy bag and she had it for almost 8 months when they did the pull through procedure and reattached her colon.  The surgeon said it was successful.  Fast forward to potty training time and it became apparent something else was happening.  Calleigh has been potty trained since 3 years old except she continued to have "leakage".  It was a huge issue especially as school.  She needed to wear a pull up at 6 years old.  Luckily, she was never upset by it but other kids started to notice and honestly, who wants that for their child.  After years of searching for an answer (I kid you not), I came across Nationwide Children's Hospital in Ohio.  They are the leading place in the world for children post Hirshprung's Disease correction who continue to have issues.

We went to Ohio for a week of appointments .  The place was downright amazing.  The doctor is superb.  We learned so much.  We didn't get the answers we wanted to hear but we know the reason.  Calleigh not only lacked the cells in her colon to go the bathroom but the cells in her anal canal only function at 30% and you need at least 50% to work for your brain to get the message that you have to empty your bowels.  So, she wasn't having accidents.  She physically doesn't know until it too late.  It is terrible and heartbreaking and there is no cure and only management.  The management isn't fun.  We need to give her an enema every 24 hours to empty her bowels completely.  Once done she doesn't have to go to the bathroom.  So, since our return from Ohio she has been able to wear regular underwear and is no longer in pull ups.  It's fabulous for her.  Of course, we need to be home for the hour procedure EVERY SINGLE DAY at THE SAME TIME.(within an hour).  If we don't than she will have breakthrough.  It's sort of life altering to know you  have to be home at a certain time every day.  It's not really something that can be done anywhere.  In the fall we are going back to Ohio for her to have another procedure and it will make the process a bit easier.  It's called the Malone Procedure and it lets us empty her bowels from top to bottom instead of bottom to top.  As she gets older she will be able to do it on her own with this procedure.  I have so much guilt for believing her other doctor when he said it just took time to get it under control.  I wish I had found Ohio sooner or someone pointed me in their direction.  What I have learned is NO ONE really knows and you have to do the research yourself.  It's time consuming and exhausting because you also have to continue to live life and take care of your family.

There is probably more to tell but for now that is the best update.  I do my best to make it all seem OK and for our family to just be happy.  In the end that is all I really care about.  I don't care about test scores, or how many goals are scored.  Bottom line is happiness is what we all crave.  I will do everything within my power to give her happiness.