Well as you can see my little man is feeling better. He threw up formula once this morning and one time tonight but it was just mucus. He had diarrhea four times today as well. He has been a little chatter box today as well. It was kind of funny because I have never heard him make so much noise in one day! It was like he didn’t stop.
I am happy to say that he slept last night as well. And the entire night! I put him to bed last night and turned on his mobile and went to do some dishes. Within ten minutes he was out like a light on his back with no soother! (He usually only sleeps on his belly WITH his soother.) I know he was exhausted so I am not expecting some sort of miracle with his sleep habits. LOL
Daddy worked all day today and A and I just hung out and relaxed. Was nice to have him back to himself. It is so hard for me when he is so upset and there is nothing that I can do to fix it.
This day brings back a lot of emotions and memories for me. It was 14 years ago today that my grandma passed away. She was a big part of my life and I will always remember and think of her. I was with her when she passed and that day still seems so recent to me. We were bringing her back on air ambulance and I remember just watching her breathing. I think I knew before the nurse did that she had passed. It was one of the hardest things I have had to deal with in my life but I know that she is in a better place. I really wish that she could be here with us today but for some reason she was taken from all of us way too soon. I know that she would be very proud of me and how I am dealing with things in my life. I also know that she would be a very proud and amazing great grandma to A. But at least I can say that I KNOW she is one of the angels that watches over him….
It was one year ago today that my little man came home to stay from the hospital! I cannot believe that a year has gone by already. He came home weighing 9lbs5oz and is now 20lbs! Here is him one year ago leaving the hospital…
And here is him tonight with his daddy…
So as you can gather from the pictures he is home. Long story short, they never know what is going on with him and I find it pointless for him to sit in a hospital that is full of germs and many other things that I don’t want him catching. If they aren’t going to do anything then he might as well be home.
I have to say that our experience again this time at Guelph was good. Taking him into a packed emergency room was nerve racking for me but once we did the whole triage ordeal they just took us right back. I still cannot believe how good they are about realizing how susceptible he is and then Mac who deals with preemies makes us sit outside on the curb with him!
So anyhow, the nurses in the ER and the doctor were also all great. Very friendly, kind and caring. The nurses up on the ped floor were also wonderful. And of course A’s doctor, Promnitz is also wonderful.
I got a great nights sleep thanks to Joyce coming up to the hospital and staying with A. I returned this morning at 7:30am and was happy to see that A was more like himself. Little did I know that he didn’t have a good night at all. Joyce said his movements were crazy and he was very unsettled. She held him to try and get him to sleep and within six minutes (she was timing) he jumped sixteen times. He had also vomited some more formula that she said was partially digested. Ugh I was so frustrated!
After Joyce left at 8am A threw up formula two more times. However I was just told once again that it is viral. What I can’t seem to get through their heads is that Ashton has NEVER thrown up formula in the year that he has had his gj tube. It is impossible to be “normal” when the tube goes past his stomach and into his jejunum! As well, A has had a few viral infections before now and it is just bile that he usually vomits. But what do I know? I’m just the mom who spends 24/7 with this kid….
I decided that since A no longer had a fever, seemed pretty much normal to me and no one listening that I would just bring him home. He threw up formula one more time since coming home and has had three loose poops. I called his GI team and left a message that they need to call me ASAP to get him in. They need to figure out what is going on.
So thank you everyone for all your thoughts and well wishes. And Lisa, thank you! That is the second time in one month that you made me cry!
I really wish that I wasn’t the one making all of the decisions when it comes to A! It would be so nice to find a doctor that could just figure things out. If anyone that reads this has any ideas let me know! At this point I am almost willing to take him anywhere to any doctor!
So that is it for February 23rd. I love you grandma! And A, don’t make this your way of celebrating your homecoming!
It was so nice to sleep in my own bed last night! Even though I wasn’t in it much it was much nicer than sitting on a plastic fold up chair! A didn’t sleep the greatest and had two cases of diarrhea last night again. None today so that is a good thing.
Grandma and grandpa S came down today for a visit. They haven’t seen us since just after Christmas when we left there. A was asleep for a while when they first got here but decided to wake up and socialize. We had a good visit but it never seems long enough for anyone. I got to have a little nap while they were here so that was nice. I am still exhausted from the whole ordeal at the hospital. I feel like I could go to sleep for a whole 24 hours.
Well we have a very busy week coming up. Lots of appointments! I don’t forward to weeks like this. But I do what I have to do. And when it comes to A I would do ANYTHING.
Well it was another eventful night last night. Once again the diarrhea started and didn’t stop all night. I got him into the doctors this morning but there wasn’t much he could do. He said that it is probably a gastro viral infection and it usually lasts for 7-10days. So today is day number five so I hope it is almost over. He was very impressed with how A was looking for what he has been going through. He isn’t dehydrated at all, and that is the one thing that I have been concerned about. So for now I have him on lactose free formula until he is past this. Everyone knows that milk isn’t good when you are sick so the same goes for him. I would bet the next time he gets weighed he will have lost weight with all that has been happening. And add the fact that I am diluting his formula to a 20 calorie diet instead of his regular 30 calories.
Grandma was with me, which was nice. It is always so much easier to have another couple of hands to help. We had to take him over to the hospital after the doctors just to get an x-ray to make sure that his gj tube was in the right place and that it wasn’t that causing the problem.
So far today so good. He hasn’t had any more diarrhea since this morning.
Deb, his AVT was here for an appointment but she didn’t work with him at all because we had a lot of things to catch up on. She is just finishing the report for Sick Kids about her feelings on A getting a cochlear implant. And she is recommending him for one. Sick Kids relies on her opinion because she has been working with A and I for a while and can see how I interact with him and what he is doing now. One of the main things that she had to discuss with me was how much work it is post implant and to make sure that is something that I want to do. Of course she knew my answer but it is something that has to be asked. Once he gets the implant and then has it turned on it is a MAJOR commitment. Basically our life has to change in a way where every single noise that is made has to be pointed out to A. So, although I know it will be difficult at first it is definately something that I am looking VERY forward to.
Anyways I am going to get the little monkey to bed. I have been keeping him awake for the past three hours to try and get him back on schedule and he isn’t happy with me right now needless to say!
Well very early this morning, 3am to be exact, Ashton started with the diahrrea again. It was everywhere! I don’t know what is going on with him, and go figure it is the weekend so I can’t take him to the doc. However, he is in good spirits so I am not too concerned. I have been giving him electrolytes and when I give him formula I have been adding much more water to bring down the calories. He did pretty well today so I decided that we could go to my uncles 50th birthday party. Daddy and Uncle S had gone to Bass Pro this morning early and weren’t back by mid afternoon so grandma came and picked up A and I.
We headed over to my aunt and uncles at about 5pm. There were a lot more people than I had expected but it was nice to see everyone! Nicole looked great too for having just gone through what she has! A decided that when we got there he wanted to sleep (isn’t surprising) and slept for about three hours when I decided to wake him up. I know, I know it isn’t nice but I wanted him to sleep tonight and he wouldn’t have if I had of let him keep sleeping. I was surprised how tired and upset he was with me for waking him up though. Normally you can wake him up and he is still a happy baby. Not tonight. Oh well, Nicole had been waiting and waiting for him to wake up all night and he just wouldn’t. So she did get to hold him finally! She is so great with him! She will definately make a great mom one day!
So here are some pictures from tonight….
Great Grandma & A
Nicole & A
Grandma & A
My poor little boy is sick again. I was hoping that yesterday would have worn off by today but he has just gotten worse. I woke up about 1am to him with major diarrhea. It happened a few more times during the night and he had to have a complete change of clothes each time.
The vomiting and diarrhea persisted all day today and he made me very nervous at times. He tries to hold back when he is vomiting so he goes nice shades of blue. Nerve racking at times even though I am so used to it.
Monique his physiotherapist was supposed to come and work with him this morning but I had to cancel that. There was no way that he would be able to do that stuff in his condition. Grandma ended up coming over instead and gave me a break. It is so hard to see him this way. He hasn’t had a fever all day so that is a good thing or else I would probably have him at the emergency. I can handle almost anything, but when he gets lethargic it just makes me worry that something more severe is wrong. And of course his doctor wasn’t in the office today so I wasn’t able to take him in there to be seen. It has all worked out so far, and Joyce is here tonight so I will be able to get some sleep knowing that he is being watched. It would be very hard for me to sleep with him so sick if she wasn’t here.
Anyways, I have downloaded the software needed for the video camera, but have not gotten the pictures on here yet. Sorry!
So instead, I thought that I would post some from one year ago. It is always exciting to look back and see how far A has come!
One year ago today…I remember it like yesterday. J and I got to Hamilton around 3pm and Danielle was cuddling with A. She was looking at me funny and smiled. She had asked if I was ready for some good news. That is when she told me that we were going into care by parent the next week! I started crying and then J had finished washing his hands and I told him. We were both so happy and scared at the same time. It had been a long time coming. He had the first set of his shots and his polyvisol had been discontinued. There was talk of changing his g tube to a button instead of the big ugly tube that he had but that would be discussed in the meeting with Dr.Watts the following week.
I gave A a bottle for his 8pm feed and he took 110ml which was great for him. Marg was on the night shift and we bathed and weighed A. He was 7lbs 13oz. So he has gained 11lbs 8oz since then! Crazy!(Oh, and the pictures are actually from a year ago yesterday.) And the cute little outfit is one of the two that Danielle had bought him for Christmas. It is so tiny that when I look at it now I can’t even believe that he wore it!