Well A is now 5 years old. We celebrated on the 13th with so many people! And thankfully the rain held off and it was a good day to be outside. I was really excited that his little girlfriend was able to make it. She has not been able to come to one of his birthdays yet as she was usually not well enough to attend. A big thanks to everyone who came out and made the day so special!
***Pics will be within the next couple days…still organizing***
In some SUPER DUPER exciting news about A….he has finally gained weight!!! Yep, you read that right. He is no longer the 25lbs that he has been since pretty much December of 2007.
After we received his biopsy results in April, I had told his dietician that IF they were negative I was going to a blended diet. Well guess what? The biopsies were negative so on April 30th I started him on just blended food. NO formula at all.
I had done the blended diet in the past, but I always used formula as the base for it. I could never understand why he still didn’t gain and on the blended diet group he seemed to be the only one still having issues. Well some great people there told me that they didn’t see a difference until they got rid of the formula completely.
So April 29th was his last day of that junk.
A is doing AMAZING on the blended diet. He gets rice milk, blueberries, green beans, peas, avocado, honey, half and half cream, whipping cream, hemp seeds, almond nut butter, applesauce, orange juice, yogurt, chicken or beef, oatmeal, ancient grain cereal, eggs….pretty much whatever works.
When he was on formula, the quickest that he could take food on his pump was at a rate of 160mls/hour. Now on the BD he can take 280mls/hour. I still can’t believe it.
So I assume you want to know his weight right?! Well the other morning he weighed in at 29lbs!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I NEVER thought this child would grow!
And to make this BD even more exciting, I have now gone down on his prevacid to a dose that he has not been on since he was a year old! He is on 15mg right now and hopefully I will be able to take him off it completely soon. This child has NEVER not been on a reflux medication so this would be great in itself!
Some other great A news. He is now doing things that he has not done or didn’t do as much. In the past he used to roll over maybe a few times a month but it never seemed purposeful. Well he is a rolling machine. AT LEAST give times a day! He is also learning with his PT and OT to be in a position on all fours and doing most of the work himself. Yes, thank you again tracheostomy! 🙂
In some not so exciting news, school. I again was at the school last week to meet with everyone involved. It was the first meeting at the school that he will be going to. The principal absolutely rocks and I love that he is so genuine about wanting to have A at his school.
Every meeting goes fine until we get to the nursing issue. I hate hate hate the fact that he even has to have a nurse with him at school. But because of the trach we do not have a choice. However all of you know that have spent so much time in hospital that just because you are a nurse doesn’t really mean much.
Sure, when you are new to the hospital system you usually think of a nurse as a nurse. Well not me. I have had SO many issues with nurses over the years that I have learned that you can have the schooling but it doesn’t mean that you should be allowed to be a nurse.
Well my nursing agency just seems to make this really difficult for me. I am not getting the nurse that I requested (after they were all for it), but instead they have gone and hired a nurse that she thinks will be wonderful. My view….I will believe it when I see it.
So once I got over the fact that she had hired a nurse specifically for A I asked when they would be starting. I really think that anyone that is going to be working with A without me around needs A LOT of time to get to know him. He is not an easy child to get to know and he can make things difficult.
I was told that the nurse could do Monday, Wednesday and Fridays for six hour shifts. Starting end of July. This would go until October when he would then be entering the school system. Okay, perfect.
Well two days later I get a call from my case manager. She never approved that. And in the big picture, she can’t.
I am sorry, but what the hell is this nursing agency thinking?! This is just not okay. You should not tell a parent something until you know that it is something that is going to work FOR SURE.
This lady I deal with does not impress me at all. Has not impressed me since the night I met her. (See, I do read people well!) So needless to say I called to ask her what the heck to do. One month is NOT long enough at all for a nurse to come in here and learn to be with A. “But she is an RN”……for crying out loud, THAT MEANS NOTHING!!!!!!!!!! Anyone can go to school and get “training” but that doesn’t mean when you come to do it on an actual person that it is easy! And especially with a child that has such severe cyanotic episodes.
Anyways, I am thrilled beyond belief to say this. We met his school nurse the other night and she is perfect! I have been VERY good with feeling people out and I knew the minute I saw her that this would be a great thing! She really reminds me of Ashton’s primary nurse from the NICU which is kinda funny but I am just soooo excited about this!!!!!
She just finished nursing school last May and is currently working in our home hospital on the surgical floor. However she just did a mission trip and realized when she came back that she wants to work with children. When she saw the ad for a school nurse needed for a child with special needs she applied right away.
The young thing really freaked me out at first but then I got thinking. The young ones are still learning. They are not set in their ways. And I think will be more fun for A.
She has never worked with a child with special needs, let alone one that has a feeding tube and a trach. She will be doing her trach training with A’s RT on July 8th and hopefully will start coming here on the 26th of July. We just have to figure out the private nursing thing.
I was very clear with her about what we want and what we don’t want. I don’t want a perfectionist. I don’t want a nurse that is TOTALLY by the book. I don’t want a nurse that is all about his medical needs and so focused on them that she cannot enjoy him.
Anyhow, I think this is going to be just great!!!!!!!!!!!!! She definitely has a lot to learn with A but she did say before she left that she is very excited to do her training, to learn about A’s history and get to know him. I just know she is going to fall in love with my little guy and they will be a great team.