Thursday, November 6, 2014

Our Special Needs Journey:Part 21 - Halloween, Allergies, and a Purple Cast

Visiting the allergist for Bruce.  We finally got in to see that Doctor he had been referred to! Very helpful - the guy had thoroughly reviewed Bruce's medical file before the appointment.  When Bruce was about 8 months old the Gastroenterologist diagnosed him with FPIES (Food Protein Intolerant Entercolitus Syndrome).  The Allergist Dr is now calling it Food Protein Enteropathy because the prominent symptom is bloody stools rather than reflux or vomiting.

Eliminating fructose from his diet has helped a ton so we are on the right path now.  If we do not introduce any more dairy, rice, or fructose into his diet before he is 4 his gut may mature and heal and he may outgrow the allergies! So that is encouraging. It's also great to know what is causing him to be so miserable and eliminate those foods.

This kid went to the allergist and had blood drawn then we found out his cast would not come off that day as scheduled and yet here he is, all smiles with his goofy sister! You'd be shocked to see the tantrums this boy can have! He's in the toddler-hit-bite-slap phase and he's surprisingly strong.

We went in the day before Halloween to get his cast off. I had Julia and Lexi with me (it was after karate) and they thought the cast getting sawed off was the coolest thing ever.  Bruce decided it did NOT smell good after 2 weeks on his foot though, lol!

The x-rays showed that his bone is healing well but he did need to be recasted for at least another week.  This time he chose purple and I was pretty happy about that!

 Good-bye green cast! Hello Purple!

Tomorrow evening we return to the Orthopedist to get new x-rays - praying for healing!

We had a homeschool version of a Halloween party (The 8 kids that are always here, lol) with cookie frosting, mummy hot dogs, q-tip painting, monster punch, and banana ghosts.

Julia was Maleficent from Sleeping Beauty - I made her a staff and horns - totally free costume!

The first time Dean has worn a costume since he was a baby! Well, it's a Minion hoodie, footed PJs, and minion tennis shoes, but it's the closest to dressed up he's ever been willing to be!

Taylor called herself "Detective Ten-oh-Ten" (like 101 I think??) and carried a magnifying glass and notebook with her all night.  When Dean lost a minion mitten she looked all over with her magnifying glass to solve the mystery.  It was pretty funny.

Brucie was a duck because he loves them. He loves the 5 little ducks song. He love to quack. Thuy scored me a costume for $5! Pretty cute, huh?  (I'm a cat. I always am. Lame, right?!)

Post Trick-or-Treat-free-scary-face-pancakes-at-Ihop-Halloweened-out snooze! 

Julia went in to see her Developmental Pediatrician and she would not put Julia back on her ADHD meds.  It has now been about 2 years OFF the meds.  They are an appetite suppressant because they are a stimulant and she is too underweight to take them.  Although the meds don't address every challenge she faces they do help her a lot.

She has gained weight this year - an inpatient weight restoration stay at an eating disorder clinic, ongoing outpatient treatment, a ton of effort at home, and gastroperiesis meds to help her tummy empty have all contributed to a decent weight gain.  It isn't enough and isn't for long enough time yet.

Both of my girls are on an anti-anxiety/antidepressant med (as am I) and have been for awhile. I say this knowing full well the judgment that comes from others who would NOT choose to medicate their children. Having prayed about it with my husband, I am secure in our decision and want to spread awareness for mental health. Yes, Christians DO struggle with depression. Yes, even children do. That is okay.

Julia's depression and anxiety has increased significantly.  She bottles feelings in and stuffs them down - very afraid of FEELINGS in general and especially getting STUCK there. I can relate - sometimes those feelings we encounter are icky. The grief and depression I felt after Bentlee died was all-consuming. There was not room for any other emotions and I was in that place a very long time. I fear going back to that place and feeling that helpless. Julia's therapist says she talks about Bentlee a lot actually.

So the Pediatrician asks her "How do you feel?" "Fine." she says. "Are you sad a lot?" "Not really." She is not able to articulate her emotions or explain that what she feels is depression or understand what is being asked of her. She is a people pleaser and she knows the social norm is to say "fine." That and she doesn't really comprehend HOW she feels or that she is NOT fine.

The Dr would not change her antidepressant meds but she has been on it for so long I am concerned that she needs a change in kind or dosage.  Her Fraser AND in-home therapists agree. Feelings are our major project right now.

Another thing we are working on is slowing down her speech so that others can understand what she is saying. No matter how gently, lovingly we ask her to slow down and repeat herself she gets very hurt by the criticism.  She says she doesn't know how to talk any differently, it all sounds the same to her, why does everyone yell at her, why is everything she does and says wrong, so on... Breaks my heart.

My heart is so heavy right now.  I identify with her hurt, her sadness, her anxiety, her low self esteem, her confusion.  All of it. Suddenly I am 13 again and the world is so big, and so scary, and I am so small and afraid.  By the time I was her age I had tried to commit suicide at least twice that I remember. That is not something I am necessarily worried about with Julia right now but more that I can feel her hurt and my Mamma Bear is coming out. I want to protect her and make everything better. 

Thankfully she has a deep and genuine love for the Lord and I know He can equip us for this. She has a beautiful soul but I'm pretty sure I will need God's help daily to raise a teenager! :)

Okay, this sinus headache is brutal and the bed is calling my name. Or perhaps that is the cold meds talking? Either way, zzzzzz....