I finally feel like we have gotten a good start on Henley's physical therapy and are starting to make some progress in the area of physical mobility and coordination. Things are finally starting to look better to me and I feel like Henley is getting stronger and more confident in herself. We met with her therapist this morning and it was actually a positive experience for the first time. For the first time Henley was actually comfortable with her therapist and didn't end up in a full out anxiety attack or in tears. Her therapist is awesome and I absolutely love her and really respect the way she works. However, for some reason its taken Henley until today to realize the she is not going to hurt her or take her from me. Today was a good day.
Up to this point we have worked with several different therapist for several different reasons. Henley's dietitian has been tracking her growth since before surgery up until now. To give you an idea on her growth situation last year at her 18 month appointment Henley weighed 21 lbs 7 oz. 1 year later on the day of her surgery Henley weighed in at 22 lbs 14 oz which means in one year of trying to pump this child full of every high caloric things we could find she gained a whopping 9 ounces! 3 months post surgery Henley now weighs 23 lbs 14 oz. Which means she has gained and entire pound in three months, Which is amazing. Henley is now actually on the growth chart for her age!
For a while we were meeting with an Infant Mental Health counselor to address some of Henley's anxiety issues and issues with trusting strangers who are in our home for medical purposes. We also addressed some sibling issues that were due to Henley being accustom to having mommy's attention for so much of the time. She was having a hard time sharing mommy with brother & sister and we were trying to really make mommy & daddy equal when it came to comforting. Its been a tricky balance to acquire, but I think we are getting there. For a while it was almost impossible for me to be able to walk out of the house even to get the mail by myself without Henley becoming completely hysterical which in turn made the other two feel like something "should" be wrong with me going to the garage or walking out of the house for a few minutes. It was a crazy time.
We had been doing feeding therapy for the last few months but we have had to stop and change therapist because I felt like what that particular therapist was doing was not working for us. She was precious and I liked her, but every time she came she played with Henley and was working on "making food fun" which is great in theory, but having a picnic on the living room floor for every meal and putting all of our food in Easter eggs is less than practical for our family. I have now been working with dietitians and feeding therapist for a year and I just now feel like we might have conquered eating chicken nuggets without a problem. Feeding my children and meal time is the most frustrating and exhausting part of my life right now. I am anxiously awaiting the ending of this "stage". We start with our third feeding therapist tomorrow.
Speech therapy is still one of the things on the top of my list to work on with Henley. However there are so many hoops to jump through and insurance things to figure out to get the amount of help your child needs if you don't qualify for medicare. UGH. Do not get me started on that. So, we are STILL waiting on speech therapy and most likely once we are finally able to start this with ECI it will still only cover 2 visits a month. Which is silly because Henley would most likely need 2 visits a week. Why does this stuff have to be such a battle!?! Oh well, part of the journey. We will get it figured out, its just another things to be prayerful about.