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.
I can’t believe that there is only two more days until Christmas! I thought that maybe this Christmas A would understand what Santa is all about and the little things, but hopefully next year! I am so excited to teach him all about it and give him the special memories that I have from my childhood. And the added bonus of course will be using it to bribe him to do things!
So the past little while, I’d say almost a month A has been doing two wonderful things. Anyone that has a child with cerebral palsy will totally understand why this is so exciting for us. First he has been bringing his arms/hands to mid line and getting his hands to his mouth. This is HUGE for a child with CP as severe as he has. And of course with my new camera I was able to catch it all step by step! Don’t get me wrong, he has been doing this for quite a while but not as much and not with as much control as he has now.
Now saving the best for last. Up until this past few weeks A never held anything. And if he did it was not for long at all. His hands/fingers would be fisted and you would have to open it first and then give him what you wanted him to hold. Even then you would usually have to close his fist and wait till he got the idea. The things that he DID hold had to be small and basically rounded so it was easy. Well now he holds pretty much anything that you give him! He reaches for everything while he is on the floor and when he isn’t able to get it he gets VERY frustrated and upset. NOW, the most exciting part of this whole idea of holding things is that he now opens his thumb and index finger when you are passing him something! And this occurs EVERY SINGLE TIME!!! This is more than HUGE because normally children with severe CP have stiff hands that are turned inwards. The fact that he is able to relax enough to do this is just out of this world! I am SOOOO proud of him and what he continues to accomplish.
Okay so here I am holding up the cord to hand it to him and you can see how he opens his fingers…
Working on getting grip of it…
Pulling it up…
And there we go!!!!!!!!!
Just one amazing kid.
I can hardly believe it that A is 19 months old today! I look back and wonder where the time has gone. I remember the day he was born like it was yesterday. The hospital stay felt never ending and he sure gave us some good scares. But in the end he has come through it all and time has just flown by! It is even harder to believe that in just five months he is going to be 2 years old!
Grandma came over this morning and daddy and I went and did some stuff that we had needed to do. I had some stuff to return to the mall and had a ton of bills to pay. We got a new fish for our tank too. A loves watching the fish all the time. The first thing he looks for in the morning is the TV and if that isn’t on then he is looking at the fish. It is kinda cute.
A is pretty much himself today. He had a poop that was actually not even loose at all. So I guess his tummy is getting back to normal. Joyce was supposed to come tonight but she is still sick so she won’t be coming until next week. (Joyce, I hope you are feeling better soon!)
Yesterday I forgot to write my cute story about A. I had him in his swing and had put on one of his Baby Einstein DVDs. So I am in my room cleaning up a bit and then walk out down the hall and notice that A was smiling like crazy at the TV. So I come around the other side so he doesn’t see me and rewind it a little. And to my surprise it was a baby in the bath on the TV that he was smiling at. And I mean a FULL smile, almost laughing. I was so excited that he knew it was another baby! So I got out my video camera and then played it back a few more times and sure enough he smiles at the baby again! It was so cute! I was almost in tears because of the fact that I knew that he understood what he was seeing. It is the little things like this that make me stronger. And it is the simple things that so many parents don’t even think of. It is something that is expected to happen as a child grows so they don’t think much of it. Whereas to a mom of a preemie these things are amazing!
It is often a topic of discussion with other preemie moms that I talk to. And I really don’t think that a lot of people think the way that we do when their children do things. I mean I am sure that they are happy but when it is something so simple I don’t even think they think of it. A holds a toy for two seconds and I am excited. He sits in his bumbo chair and holds his head up for ten seconds and I am excited. When he gets his fingers to his mouth I am excited. I could go on and on.
Anyways tonight we went over to grandma and grandpas for dinner. Then J and I went and did our grocery shopping before picking A back up and coming home.
Well I am happy to say that A has not had diarrhea since yesterday! He however did not sleep well at all again last night and was awake pretty much off and on all night. So that was not fun. I am still trying to get him out of his scheduale that he is in sleeping so much during the day and then up at night. I think I am almost there!
Tonight when A was laying on the couch with daddy he actually laughed so loud that I heard him from the kitchen! So I run out and get my video camera to record and of course he didn’t do it again! Little bum!
He is also doing this new thing where he tries to sit up. He will be laying on his back and you can see his elbows dig into the couch and then you can see him pushing. He sure does know what he wants to do! It must be so frustrating for him! I also had him in his bumbo chair last night and took a video because he was doing so well compared to before! He is so determined with everything that I know he is going to do whatever he wants to do!
Well just thought I would look back again since I don’t have much else to say and no pictures….
A was a full 8lbs! When we got to the hospital he was sitting in the middle of the pod amongst all of the other babies and nurses. He was at the age where you couldn’t just leave him lying in his crib because he was not a happy boy. Plus add the fact that he had his “own” room at the back of the pod and couldn’t see anything going on! And with this little social butterfly that just wasn’t good enough for him. LOL
Cuddles with daddy…
Oh the days of bottle feeding…