Ryan was born September 10th 2006 at 28 weeks. In September 2007 he was diagnosed with mitochondrial disorder. Sadly this little guy lost his fight to mito last night at 7:20pm at home with mommy and dadddy. Danielle and Kevin my thoughts and prayers are with you at this time. Rest in peace little guy!! You are a beautiful angel.
Just a quick post for thoughts and prayers for a dear family I have met here at the hospital. Their little girl is four years old and has SMA. She has been in critical care for just over a month. They took her home today around noon and she will be taken off of the vent at home after spending a couple of hours with mommy and daddy. Little Ally will be earning her angel wings this afternoon. Ally is an adorable little girl who has fought for so long and so hard. I cannot even imagine making the decision her parents have. They are two very wonderful people.
Fly high little one! A beautiful angel you will be. *HUGS & KISSES*
I am sad to report that sweet Charlotte passed away this evening at 8:11pm. My thoughts and prayers are with you Kelley, Vann and family!!!!! She was such a tough little girl and I know she is flying high above now, happy and healthy.
Well I am sad to announce that baby Jaxon passed away this morning at 2:43am. His parents were able to be there with him as he passed. This family has already suffered so much and now have more heartache to deal with. They have lost all three of their babies. My heart truly goes out to them at this time.
On a brighter side of life, my little man. He had his last auditory verbal therapy session yesterday for a while. Deb said that she will be waiting to come back until after we find out about his implant and when the tentative surgery will be! She always has tons of cool toys for him and he loves working with her!
Last night I put A to bed and he just did not want to go to sleep. I couldn’t help but laugh at him because everytime that we would go in to check him he was smiling like crazy at us! These pictures were at 1am!
Today A and I headed to Hamilton to have a playdate with Sophia and Alina. It has been a while since we were last there to visit but we were able to make it work for today! Our days with Alina and A are just really busy so it was great to finally get over there. It is so nice to see the way that they interact together.
Sophia bending down to kiss A…
Aren’t they the sweetest?!
Sophia putting stickers on A’s head…
A getting his very first kiss on the lips! LOL (Don’t know whats up with my face in this picture! LOL)
One of the rare findings…a picture of A and mommy! (Thanks Vickie!) And yes, A is standing here with VERY minimal support!
A was getting pretty good at pulling out the plug from Alina’s trach…
Leaning in for another kiss!
Looking at the balloon…
Caught them both smiling!
Alina & Mommy…look at that smile!
Such a sweetheart…
Watching TV…are you comfy A? LOL
This was way too funny…Alina was sucking her hand/thumb and her elbow was by A’s mouth…so he decided that he was going to suck on her arm!
He is really thinking here!
Back to sucking on her arm…
After leaving from our playdate I decided to stop in at Mac. I was really hoping to see Marg since it has been almost a year but of course she was not on. We did however get to see Dr.Shah and talked for a bit. (He was A’s very first doctor in the NICU & a wonderful man!)
As we were leaving from there and heading to the elevators we got REALLY lucky! Almost every single person (besides nurses and doctors) that A had was coming from the other way!! It was so nice to see them. There are a few that we have not seen since A was still in the NICU!
A when I got home from Hamilton…passed right out!
Well I have some very sad news about a couple of babies that I follow. Three gorgeous triplet girls were born on March 11th 2006 at 24 weeks. Livia May passed away last night after a perforated bowel or NEC. She died in her parents loving arms. She was the dear sister to Georgia who passed away on April 6th from NEC and the surviving triplet is Nina. Please keep this family in your thoughts and prayers.
Jaxon was born on March 2nd 2006. He is also the only surviving triplet. His sister Courtney and brother Colin passed away on March 8th 2006. He is very very sick right now. Please keep him and his family in your thoughts and prayers as well. The latest update is from tonight by Jaxon’s uncle saying that his mommy and daddy were called to the hospital by the doctors. I cannot even imagine the pain that these two families are going through at the moment. To have two children die would be devastating and having the surviving ones sick would be very scary. Both of these blogs are on the side of my list if you would like to read them.
A few pictures of my little man from the past couple of days…
Well this morning I got a phone call that I really wish never happened. J’s mom called to tell me that his grandmother passed away early today. She was a wonderful lady and I am so happy that I got to know her. She was a very proud great grandma to A and bragged about him a lot. Here are a couple of pictures of her with A last summer.
You know, when things like this happen it really makes you step back and realize what you “should have done”. I really wish that we had of visited with her more and that she would have got to see A more. And I was looking through my pictures I realized that I don’t have that many of her with A. Let alone with J and I. It is definitely a lesson learned and shows how much you need to appreciate people before it is too late to do so.
Grandma, we love you and will miss you! I am so happy that A got to meet you as well and you are now another angel looking down over him. Thank you for all that you have done for us and the love and support you have given us over the years. (Especially during A’s long hospital stay, you were always concerned and thoughtful.)
On a brighter side today A has decided that he now likes to roll from his tummy to his back. He did this about five times today and I have it on video! I was soooo excited. The last time that he has rolled over was probably like six months ago and seemed more of a fluke than anything. I am so proud of him!
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!