Oh where do I begin?! Well we have been home now for about five weeks and I have to say that things are going AWESOME! I really don’t know why I was so afraid of the “trach talk” way back when, but really it should have been a LONG time ago. And by a long time ago, I mean before A even came home from the NICU.
It breaks my heart to think that for four and a half years he has basically been suffering in silence. Unable to tell us that he cannot breathe right. Unable to tell us that his sleep was so crappy and he was up so many times a night because he would wake up needing air. The sad part is, is that all of this was KNOWN to the hospital where we spent 88 days back in 2008. They knew his sleep was horrible. The sleep study showed that he obstructed every five minutes. But yet they didn’t feel the need to tell me this as his mother? Instead I was told that “it wasn’t that bad.” I would hate to see then what they would consider BAD.
Feeds are going pretty good. I now have him up to a mixture of half and half with the two formulas, which gives him 37.5 calories per ounce. However he is still sitting at about 25lbs which is not really where we would like to see him. Weight is something that he definitely needs to gain! The hope is that now that he is not using so many calories to breathe that he will start gaining more. We are also only giving about 1200cals per day which his doctor feels is enough. So we will se and maybe have to up him a bit if he doesn’t start gaining something soon.
SLEEP. WOW WOW WOW is all I have to say. This child SLEEPS! I cannot believe the difference that the trach has made with just this alone. Do you know how odd it is to put your child to bed and he goes to sleep within about ten minutes? Do you know how odd it is to not be going up and down stairs fifty times before you even get to bed yourself? Do you know how odd it is to peak in at your child and they are satting about 95 CONSISTENTLY? Do you know how odd it is to not listen to his alarm go off pretty much ALL night? This is ALL so very odd to me!!!! For four and a half years I have been constantly getting out of bed. Constantly silencing his saturation alarm. Constantly trying to console him to go back to sleep. And now I do basically NOTHING. My little man can finally SLEEP. Finally get a good rest. Just flippin amazing!
Feeds. They are going okay. It is so weird after feeding A for his whole life during the night to be doing NO feeds and night and just feeds in the day. Right now I have him up to a rate of 155mls for a total of 230mls per feed. And he gets four in total.
Reflux. He seems to be doing okay reflux wise. He is down to 30mg/day of prevacid from 45mg.
Daytime. Everyone asks me if he seems better in the day since he is getting such a goods night sleep. And I have to say no. But this is only because A has always been such a happy wonderful kid. I used to wonder where he got all of his energy from when he slept so crappy at night! And to this day I cannot answer this.
Mommy and daddy. We are better than EVER. I feel like since coming home that I have a brand new son and a brand new husband. J has been helping out more than ever and it is so greatly appreciated. We had a long talk shortly after A came home and he told me that he realized after all that just went on with A of how close we were to possibly losing him. And now with the trach it is a whole new world for us. I never thought I could love J more than I did, but another WOW! Life is just awesome now!!!
A also had biopsies done on January 18th for the mito/metabolic issues. We will not be going back until the 20th of April for the results. My heart is kind of heavy knowing that we are so close to maybe discovering what could be going on with A. I am VERY scared but I try not to focus on it to much and just live each day with him as if it is our last. Life is too short to worry about things that may come up and even things that do come up are not always the “worst” thing that could happen.
I think I am scared too because J and I have been talking about having another baby. Well trying to anyways. And to be honest I would do ANYTHING to have another child. A healthy child. I think it would be so good for all three of us. But I know that I have to wait until we find out the results from the biopsies and go forward from there.
February 7th A got to skate with the Toronto Maple Leafs! Here are some pictures!
A also made the Leaf website on video from the skate. Go here and watch at about 38 seconds to see him being pushed by Bosak.
In other family news, my brother Shaun and his wife (my sister in law) Andrea were on the TV the other night. Andrea has been dealing with heart failure and in October of last year her life was being measured in hours. It was at this point that she had an LVAD placed (a mechanical heart) to keep her alive. She has been on the transplant list now for over 100 days and we all pray she will get it soon!
Please go and watch this. Just go HEREand on the right hand side click on the video Hope For Heart.
And today, 17 years ago I lost my Grandma C. I remember it like yesterday. One of the worst times of my life. I still get emotional when I think about her. I just wish she could have stayed to meet A and just be the wonderful part of my life growing up that she always was. RIP Grandma, I love you SOOOO much!
Sixteen years ago today I lost someone who I loved very much. My grandma C. I really can’t believe that it has been that long. WOW, how time flies. There is hardly a day that goes by where I don’t think about her and how much I miss her. How much I wish she was around me. How much I wish that she could be a great grandma to A. How much I wish I could see her hug him, talk to him, just love him. How much I just wish she was still here, period.
I have yet to understand why we seem to lose the great ones that we love too soon. It just really doesn’t seem fair. And it just totally plain sucks because she was so loving, so caring and such a wonderful grandma. I have SO many great memories about her which I am thankful for.
I really truly believe that even though I cannot see her she is here with us. A definitely has his “friends” that make him smile and giggle and I am sure that she is one of them.
I love you grandma.
It was three years ago today that A came home from McMaster after his ICU stay.
It was two years ago today that he came home from hospital after being admitted for high fever, congestion, vomiting and all that fun stuff.
It was a year ago today that he was still inpatient at Sick Kids dealing with an NPT tube.
And today, well he is recovering from pneumonia!
Hmmmm something about him and the number 23. January 23rds and February 23rds. This explains why 23 is one of my lottery numbers. Not that it has been lucky, but I figure it is significant so I might as well!
So I have a few days to update on. Monday and Tuesday night I got to sleep ALL night because Joyce was here! It was kind of a surprise to have her do those shifts, but I more than welcome her here whenever she would like! A was wide awake of course for her so they had a little fun with his computer…
Wednesday A had a very busy day. Grandma was here early and I headed off to a meeting with the social services board. Every year the government gives me money to use to pay workers to come and be with A. It is far from enough money, but hey at least it is something. Anyways, in March I got a letter telling me how much I was approved for and I did not agree so I had to write a letter to fight it. With that fight I got an extra lump sum but still was not happy. So this meeting was with people who didn’t know A’s case and were coming in with an open mind to decide whether or not I was treated fairly in the decision making process. I think it went very well so I will hear within twenty days whether or not I won.
Liz was here to weigh A and I was so surprised that he actually went DOWN in weight!! I have been thinking that he has gained like five pounds in the past three weeks but I was wrong. He is now 22lbs 10oz.
Bonnie his early interventionist was also here to work/play with him. She always brings a lot of neat toys and he is always happy to see new things. She had brought this really neat toy that is easy for him to push. When he does, the toy vibrates and there is a little light that comes on. This is the toy here…
He really needs to do a lot of work with switch toys because when he goes into his electric wheelchair next summer he needs to be familiar with this type of thing. I am happy that his EI is willing to leave toys with us because the price of switch adapted toys is just insane! Not surprising, as everything that is needed for a special needs child is crazy.
Bonnie also brought a little velcro piece that she had came up with to wrap around A’s hand to hold a marker so he can draw. Of course I think he got more on himself than the paper but hey, it was great to see him doing this! He is such an amazing little guy.
Wednesday night in this household was NOT fun. A did not sleep well at all and was very unsettled and not happy. It was one of those nights where it was pointless for me to even attempt to go to bed.
Thursday all day he was not well either. He didn’t have a temp which was good but it is so hard when I don’t know what is wrong. I had him sitting in his bouncy chair and was getting some laundry together and noticed that the side port on his tube was open while his feed was running. When I went to close it I realized that he had a ton of bile pouring out of his tube! I know when this is going on that it is usually his tummy that is not good. I diluted his formula half and half, gave him some tylenol and put some numbing cream on his gums. The poor kid is cutting six teeth right now, three of which are molars! (You can also see two others that will be coming through shortly.)
So yesterday I didn’t get much done. He wanted to be held at all times and if he saw me walking away he would fuss. After hours and hours of this he finally fell asleep and I was able to lay him on the couch without him waking up. He slept a good couple of hours and when he woke up he was fine! AHH what a kid!
Today was a good day. Dawn his PSW was here from 2-5pm but he decided that he wanted to sleep almost that whole time. I also had a new worker come over today so we could talk. Her name is Shelly and she is great! I am so excited to be having her come to work with A. She has been working with one of my moms students now for nine years and I know that if this mom is “approving” of her that I will have no issues. It is so nice to feel that I can trust some people with A!!!
So the weather around here the past couple of days has just been WAY too hot and humid! I am really not a heat person and I am not looking forward to the summer if the past couple of days are any indication to what lies ahead!
Yesterday A had some physio with Monique and did very well. She is impressed with his head control and his sitting with assistance. It is so difficult for me to really notice the progress so it is nice to hear it from those who don’t see him that often. We talked about doing physio now every week instead of every second week. I am happy with this because I feel that he has needed it once a week for a long time. And Monique is really great with him and works him how he should be worked. She definitely takes her job seriously and I am lucky to have her as his physiotherapist.
After therapy I decided to pack him up and take him to the Special Olympics that were happening in Guelph. Grandma was volunteering so she met us across the street. WOW, I could not believe the amount of people there! I don’t think I was really expecting what I saw happening. It was so great to see all of these kids out there having fun! I felt myself having to hold back tears a few times. Seeing things like this really makes me think about A’s future. It is so hard not knowing what he is going to be capable of in life.
Anyhow, here are some great pictures!
This is Monique and her brother with A. My mom used to work with Monique a few years back and wow has she ever grown!
This is Sean with A. My mom has worked with him for a long time. He is a total sweetheart and from the very first time meeting him he always brings a smile to my face. He has cerebral palsy as well.
This is Mady, another student of my moms. She is eleven years old and has athetoid cerebral palsy, the same type that A is said to have. I met with her mom a while back when I first got A’s diagnosis of cerebral palsy. It was nice to be able to talk to someone who has been through it already.
Mady makes me think a lot about what A will and will not be able to do seeing that she has athetoid cerebral palsy. Her mom said that she used to do what A does now as well and it wasn’t until time went on that they realized how much she wasn’t able to do.
Mady and A playing frisbee!
Well I thought I would do a post before we head out for Toronto! A is getting his MRI and CT scans done tomorrow. The MRI is for the cochlear implant (the last step before we find out whether or not he is a candidate!) The CT scan is for his doctors in London. We arranged for them to be done together so that he wouldn’t have to be put under twice.
Today A’s early interventionist was here. It has been a LONG time since we have seen her as she was off sick. She is absolutely amazing with him and you really know that her heart is in her job! She comes to play with him and help him with different toys and such. Well today she helped him draw a picture!!! I once again had a moment where I could feel the tears well up in my eyes. Amazing how such small things mean so much!
Grandma was here too today and A had some fun with her today!
Anyhow, I am off and can feel the butterflies in my stomach already about tomorrow!
So we had a great time the other night at the stag and doe in Stratford. We went over to J’s cousins place when we got there to have a couple of drinks before heading out for the night. Here are some pics that I took…
Aunt K…don’t ask!
We got back to Guelph yesterday afternoon about 3pm. A was awake sitting in the middle of grandma and grandpa’s floor in his bouncy chair as everyone worked around him. (They are redoing their great room.) He wasn’t up for long before he went down for a HUGE nap! He didn’t get up until 11am for them either!! We all had dinner together before we headed home to get some much needed sleep. Well for my much needed sleep!
Today was a crazy day around here. Grandma was here for 10am, Liz and Monica were here at 1pm and Dawn was here for 2pm. A is back to gaining good weight and is now 22lbs 5oz. Monica did a little bit of work with him and I told her today my frustrations with people coming here that are supposed to work with him that don’t. I just feel that it is a waste of my time and A’s for them to come and do a couple silly little things with him. Therapy is to work the child and help them strengthen muscles. The work that my mom and I do with A is MUCH more valuable to him than what she gets paid to do. So I am hoping that next time she is going to step up or of course I am just not going to have her come anymore.
Here are some great shots that I took of A today. I LOVE LOVE LOVE the first one!
Well the weekend went well around here. A was doing well and getting back into his old routine of sleeping at a regular time, having good naps and smiling like crazy! However all of the fun ended yesterday afternoon. He was asleep on the floor and when he woke up I went to pick him up. I had just moved over the IV pole that holds his pump and feeding bags so that it wasn’t in my way. Well as soon as I picked him up he let out an awful scream and I felt a little bit of resistance. I had pulled his feeding tube right out! I was so upset and felt so awful for doing it! He was not very happy to say the least and I had to just hold him and get him to settle down. When I was able to put him down for a minute I had to put the tube back in a little bit and tape it up really well. With it being a bigger tube than he had ever had in the past, there was TONS of bile leaking out of the holes that are along the tube. So I had to bend it over and over and tape it up like that as well.
I called McMaster to see who the GI was on call, and thank goodness it was Dr. Sant’Anna. It is always nice when I deal with an on call doctor that is A’s. She told me that it was Sunday so it wouldn’t be done until Monday. I knew this before I called but I wasn’t sure what to do. She had said the emergency department was packed and full of sick people so she said if I could manage with A to just stay home and bring him for today. Normally when something like this happens, the child is admitted and they put in an IV to give them fluids. However, A is done his RSV shots and I wasn’t taking the chance of him catching some nasty bug from being admitted.
I went over to my parents last night to have dinner with Uncle S and Andrea. My parents came home shortly after I got there from the cabin. A seemed to be doing okay so I wasn’t too worried about it.
When I got home with him I handed him off to daddy and got his med ready for his reflux. Of course I didn’t think that he would take it as he never has in the past. To my surprise he took it all and wanted more! So I got the bottle out and some sugar water. He was going nuts. After about ten minutes we realized that he wasn’t getting anything out of it anyways so I tried a different nipple. Well he would get too much and start choking so that didn’t last long.
Last night when I put him to bed he was so tired he fell right to sleep. It was probably around 11pm. Well at around 12:30am he was fussy and wanted his soother. He was acting VERY agitated so I just thought that maybe he was feeling hungry. Although for a child who has never felt hunger I don’t know that he would have put the two together. I didn’t get much sleep last night as he was up and down all night. This morning J went to work just before 7am. I got up because A was moving all around and the minute I touched him I knew he had a fever. He was boiling! So I picked him up and brought him into my bed. That is when I noticed how dry his mouth was. His lips were even all cracked. I grabbed the syringe and some water and he just wanted more and more. I think he took about 100ml within ten minutes! I was very impressed but at the same time worried that he would throw up. That is what usually happens when he has any water or fluid by mouth. However he didn’t.
I took his temperature and it was 104. Now I know that fever is a good thing because it means that the body is fighting infection but I was very nervous. I thought that it might of meant that he had something going on in his gut from the tube coming out. Of course some of the problems that can happen with that are life threatening so when my mind starts going I get even more nervous. I gave him some advil and kept giving him water.
Grandma was here for just after 9am and we headed to Hamilton. By this time I think A had about 150mls of water. The whole car ride he just wanted more water. Grandma couldn’t give it to him fast enough!
I was very pleased with my experience at Mac this time. Can you believe it?! I almost can’t! Not ONCE have I ever had a good experience when I take A there. This time right from the start it was good. We didn’t have to wait at all to go in and the doctor that did the tube was excellent. The other technician that was there was also wonderful. I swear he had the new tube done in about four minutes! I have NEVER had anyone do it that quickly!
So we left there and headed up to NICU to see Dr.Shah. He did come out but not for long because he said it was crazy in there today. I also saw Bonnie, and I haven’t seen her since we left the NICU. She came up to me and gave me a great big hug and couldn’t believe her eyes when she saw A. It was really nice. I didn’t get to get any pictures though because she was on her way to labor and delivery.
When we got back home with A I checked his temperature and it was the same as this morning. He had two doses of advil and it hadn’t come down at all. So I called the ped and he said to just bring him in. Grandma left to head back to work and I took A to the doc. Of course by the time that I got there he was so exhausted that he was really just laying there not doing anything. His chest also sounded good which was the opposite of today. He sounded so full and wheezy all day. Of course with his high fever he didn’t want to leave him without antibiotics. I thought for sure that he would admit A but he didn’t want him in a germ infested hospital either. So he said to try the antibiotic and if the fever doesn’t come down he needs to see him again.
So as of right now his temperature is STILL the same. He just had a shower with daddy and I and he was not happy. That really tells us that he is NOT feeling well when he doesn’t like the water. This kid is a fish normally!
And for the most exciting news of all. A HAS NOT VOMITED ONCE SINCE THE TUBE CAME OUT YESTERDAY! HE HAS GONE OVER 24 HOURS WITH NO VOMIT! I CAN HARDLY BELIEVE! Now I shouldn’t be saying any of this because I might jinx it, but I have been saying this entire time that I thought it was the tube. No one would listen. It couldn’t be the tube…it wouldn’t be the tube….hmmmm we’ll just have to see! Everyone keep their fingers crossed!
Well my pictures aren’t working so I will post them tomorrow….
My little man is now 22 months old! (As of yesterday) I cannot even believe that in just two months he is going to be turning 2 years old!
Yesterday A’s dietitian was here to weigh him. He is now 22lbs13oz! He has been gaining 15grams per day average which is great considering that he has been at 45ml/hour for a long time now.
So today Leanne came from the company that deals with all of the equipment for special needs. She brought over the superstand for us to try using with A for a bit! It was so exciting. I really am not sure which stander I like better though. The buffalo stand that we tried a while ago was more compact than this one and didn’t take up as much room. However this one I believe gives A more support. I think this really helps with him feeling more secure. With the buffalo stander you could tell that he wasn’t really liking it after short periods of time. This superstand really helps hold him secure. I hope that it will help him feel more relaxed and able to use his hands/arms more than usual. So we will see how it goes and then we will decide which one we want to order for him.
So the reflux issue is still a problem. He has been doing a little better with the amount of vomiting but not even close to what I would consider okay. I have also noticed the past week or so how much he drops his sats. Very frustrating when we thought we were past that. It is very obvious that it is the reflux that is causing this issue. I will be taking him to see his GI next week and I am hoping that she will be able to help him out in SOME way.
Grandma was here today and she had A holding some different things…
First is his little shaker…
Grandma’s granola bar…
Grandma’s banana…look at that curious face!
Open wide!! (The funny thing was he was licking the banana!) He didn’t gag or throw up! I was so excited that I took a bit and mashed it up and then tried to spoon feed it to him. Right when it went in his mouth he threw up. He sure did like just licking it though and getting the taste that way. But hey, it was a step for him!
I just LOVE this shirt on him! I bought it at Christmas for him and thought it would be way too big for him but it fit pretty good!
A in the superstand…what is that face all about?! (Might I add that those are just the most gorgeous blue eyes EVER!)
My smiling little man…this however is the only one in the stander with him smiling. I tried and I tried but nope he wouldn’t do it. Strange since he is normally the smiling king!
The collar around his neck is not part of the standing frame. We just received that today though for him to help with support. In the stander he cannot be straight up or even close really or else he pulls his head forward and it will fall down and he can’t lift it up. So this collar doesn’t let him do this. I found that it worked pretty good in the stander because that way he could be standing right straight and not have to worry about having his head flopping down.
Well today was going good until about 1pm. A didn’t get up until grandma got here just after 10am and he had a pretty good night. He played with grandma for a good while but started fussing like he was tired already. So around noon he was fast asleep on the couch.
At 1pm he started moving around like he had gas and was trying to poop. He had turned his head to the other side and started gagging. Grandma had turned him over to change his bum and I noticed he was going to throw up. I grabbed the blanket and he threw up a bit and then was heaving. I noticed he was starting to go off colour so I sat him up a bit. Then I realized that he was going into one of his spells from the past. I was a mess. I picked him up and he was totally stiff and VERY VERY blue. There was no chest movement or breathing happening. I put him down and went to find the phone. I couldn’t find it right away because I was so frazzled.
When I came back into the living room my mom was holding him and I thought that he was gone. He was not the colour he was at first. He was almost grey looking. Eyes were open but glossy and he just didn’t look with it. I am glad that she was here with me because I would have been way more panicked if she wasn’t.
She sat with him on the couch and it took a good five minutes for him to look “normal” to me. He was very pale, in a cold sweat and exhausted. I have never seen him like this after he used to have his spells. He was always right back to his normal self. Almost with the snap of fingers.
I called his pediatrician but the office is closed on Wednesday afternoons. I will be taking him in tomorrow to talk to him. Not that I will get any answers but I want him to know what has happened.
I can’t even begin to describe how I feel about today. It is the scariest thing ever and I know that every time A does this there is the chance that his heart is going to stop. Stimulation, blowing in his face…nothing helps. It is kind of like you just have to wait until he starts breathing. When he had these spells in the PICU (on a vent) the docs could not figure it out. When they would bag him, it would pop. It was impossible to get air into him. That is when I found out that they are called ALTES-apparent life threatening events. Fifty percent of the time there is no underlying issue.
I am a big worry wart and things like this just don’t sit well with me. I am so afraid that I am going to lose him one day. I was just recently feeling like things are back on track with him, his implant is on the move, sleeping better…of course I have been very worried about his vomiting and I really think that is part of the problem now with what happened today. Now the docs need to step up and do their part to figure out what to do with him.
Well I am off to bed with A’s monitor on full. Going to be a rough night.
Well it has been a busy two days for me. I feel like I never have enough time in a day to do what I want to do! Yesterday I got A up about 8:30am so that we could drive daddy to work so I would have the car to run a few errands. Grandma got here just after 10am and A was already back asleep! Guess he didn’t like being taken out of bed that early. Lately he isn’t actually getting out of bed until an average of 10am.
I left just before noon to go to pick up A’s new moulds for his hearing aids ONCE AGAIN. I was very upset when I got there because they made the one that he wears all of the time without the lock on the top. And of course the right I didn’t have much hope for anyways. They told me if they didn’t fit then to just call and they would book him in to do new ones. Ya, easy for them to say but I am the one that has to drive there and back every time for nothing!
I stopped at Babies’R’Us on the way home to get A his new car seat. I paid for it and was waiting and waiting for them to bring it down for me. After about fifteen minutes I asked her to call and see what was taking so long for the guy from stock to bring it down. It was then that she tells me that they don’t have it in stock! Ugh I was so mad! The lady then tells me to give her my name and number and they would call when they are in. LOL I told her I wanted my money back instead and that I would come back.
I got home just in time for grandma to head back to work. A was up and he sat in his new chair for a while and watched TV. He loves sitting in it!! He was still a bit on the cranky side yesterday but is much better today. Actually back to acting himself!
Today A got up at 9:30am. Liz his dietitian was here for 10:30am. He has been gaining an average of 11 grams a day for the last couple of weeks. He is now up to 21 pounds 3 ounces! My little porker! I still cannot believe even the size of his legs now…how chubby they are. They were the size of a finger when he was born!
I talked to her about his vomiting but we both agree that we don’t think it is his formula. She also brought new feeding bags that she wants me to start using. Instead of the one bag there are two connected to one line. One holds the formula and the other holds water. I can then program the pump to automatically do flushes at whatever interval I want. It will be a big help because he needs to get an extra 150-200mls of water a day on top of his formula. I am okay doing it during the day but this will help so that I don’t even need to worry about it and during the night will be even nicer.
Andrea was here from 1-5pm today. I got a ton of stuff done around here! I cleaned out our big storage closet today for about the third time this year. Now I have it so A’s stuff that he uses is in there and not laying all over the place. I also got to make a nice dinner without having to worry about entertaining A.
Tonight I went out to get some cleaner for our air purifier and met up with my brother. We went to the mall so that he could find a shirt/tie for his girlfriends grad ball this weekend. The theme is “James Bond” so it should be interesting!
Oh and for those of you wondering, yes I did finish my vacuuming with my Dyson! LOL I could barely sleep the other night because I was so excited for the morning to come so that I could do the whole apartment! Who would have thought that you could be so excited about cleaning?! Anyhow I did finish and I had to empty the container TWICE! And this is from vacuuming ONE TIME! I am so impressed with this machine!
I can never get over these two! We were so worried about Cujo when I was pregnant because he was so aggressive and possessive. We were even told by the vet that we would have to take him to school and if that didn’t help than the best thing to do would be to put him down. So off to school he went and he was the teachers pet! I am so amazed when I watch Cujo with A now. He loves him so much and always wants to be near him. Today it was kind of funny and J and I both had a good laugh. A was sleeping on the couch and J and I were sitting on the love seat. Cujo walked over to us and sat there for a few seconds then walked over to A…sniffed right in his face and laid down on the spot. It was too cute.
And A with Cujo….well he just can’t get enough! Every time he sees him walk by him he smiles or pulls his arms in and has his mouth going like he wants to call him.
Well today started off pretty hectic for me because after J went to work I fell back asleep and didn’t wake up until the phone was ringing. Grandma was here! And it was almost 10am! A was still sound asleep….WOW is all I have to say about that! Anyhow it was then that I found out that Andrea was coming over. My mom had recommended her to me to be a worker for A. So I was a little frazzled because I had just got up, hadn’t showered and most importantly never had my coffee yet!
Anyhow things went okay. Andrea was great. I was kind of nervous because I have not had any luck in the past with having to meet people that want to work with A. It is very hard to trust anyone with him. I was also a little nervous because my mom had mentioned how she was only nineteen years old and I know most people that age would not work with him well. I was impressed to say the least. She is going to school for becoming a developmental service worker and wants to eventually be an EA. I believe that it takes someone special to do that kind of work so I think that she just may work for us!
I had to lay down this afternoon while my mom was here because I was so tired. I have not been feeling myself for the past couple of days. I cannot believe how many times this year that I have been sick! I really can’t wait until the nice weather is here because I am so sick of the cold and not being able to take A anywhere.
A slept this afternoon too. Got up just before 4pm, and boy was he happy today!
He was in his swing just laughing away at something!
And my favorite picture of the day!!!
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!
Well my little man was admitted into the hospital yesterday. Tuesday night I put him to bed and around 1am Wednesday morning he was up and fussing. This went on the entire night. Grandma was here yesterday around 9am and he was still very lethargic and had non stop movements. He just couldn’t sleep and if he did fall asleep he was right back up within ten minutes. I tried to get ahold of his GI team at Mac but they were not in yesterday and his ped wasn’t either, go figure.
Grandma left at 2:30pm and I took A’s temperature because he felt a bit warm. It was almost 104 so I gave him some advil right away. After an hour I checked his temperature again and still no change. At 6pm I gave him some more advil and his temperature came down to 103. His mouth was very dry so I got my syringe out and put water in it. He was going nuts! So I decided to get out a bottle and try that…take a look.
You can see how sick he is in the pictures but I had to get him with that bottle. When I would take it away he would fuss and stop as soon as he had it. So after about two hours of him sucking on it guess how much water he took from it? NONE! LOL
Daddy came home around 6:30pm and I decided that we needed to take A into emergency to get some x-rays done. His breathing by this point seemed labored and he just was not happy at all.
We got into emergency around 8pm and they took us right back. Upon putting a saturation monitor on him, he was only satting in the 70s so they put some oxygen on him. The doctor wanted to start an IV but I told him I wanted to blood work done first and then we would discuss the IV.
They did a chest x-ray and an x-ray of his belly because I was worried that his tube wasn’t in the right spot and there may have been a possible obstruction. The blood work came back that he had a very high white cell count which definitely means that he has an infection. The liver count was also a little high, but his doctor said not to really worry at this point. The x-rays both looked good so I guess that is a good thing.
His ped actually came into the hospital to see him about 11pm and that is when he told me that he wanted to admit A and that there was no way that he was going home. He said that he would do an IV and I told him that I get upset when it takes them many pokes to get one in. He looked at A’s hands and said he could do it in one. So I said okay. However after two attempts it still wasn’t in. I know that he felt very bad, but A was so lethargic that he didn’t really seem to care what they were doing. His ped said he wanted to try one more time and if he didn’t get it he would run pedialyte through his tube. Third try, no go. After some more discussing of the issue he tried ONE more time in his foot and got it in.
We were taken up to a room at about 2am and I was hoping after such a long night the night before and a long day that he would sleep wonderful. Nope not a chance. He was just as bad as the night before. It is so heartbreaking for me to watch him like this and there is nothing I can do.
I have had about three hours sleep in the past two nights. Today for A was just as bad. His fever was still up at lunch so they gave him some more tylenol. At about 2pm I was so frustrated that I went over to the nurses station and told them that they needed to order some medazalam for him. The nurse came back and said the doctor said no because it is too strong for him! I told her I had a prescription for it at home to use so they could do it.
3pm, A was very off colour and just boiling. I went and got the nurse and she immediately called his ped and he came over to see A again. It was then that he ordered the medazalam for him and said he wasn’t going home today either.
So anyhow, I am here just to make formula (they don’t make 30cal at the hospital) LOL and then I will be heading back. Joyce is coming to stay with him tonight so I am looking forward to coming home and sleeping for the night.
I will be sure to update when I can…..
Come morning he was the happy baby he normally is. Grandma was here for 9:30am and she never would have guessed about the night that he had. We took him to the doctors for 10:15am but didn’t get in until about 11am. He was weighed in and was the big 20 pounds! I can hardly believe it! He got his RSV shot and was not a happy camper. I think it bugs me just as much as him. I find it so hard now to watch him go through things like this. Funny when I look back at everything I watched him go through in the NICU and didn’t make me flinch.
I spoke to his doctor about the vomiting and even brought him my list of times and how much was thrown up. He didn’t seem too concerned about it but did say that if he isn’t better by the end of the week to bring him back in. The blood he said is probably from the force of the vomiting and his esophagus is irritated. I however am not convinced that the bile is nothing and have a feeling the tube isn’t correct.
Anyhow we got home around noon and A was asleep at 12:30pm. He didn’t get up until 2:30pm which was perfect timing for Deb his AVT. Grandma left and then I got A all set up in his chair ready for his therapy. Deb noticed right away that Ashton just wasn’t himself. Within minutes he just looked pale and lethargic. He wasn’t interested in any of her toys which he usually loves and didn’t really want to do anything. She got the bubbles out and he was okay for a few minutes (he loves bubbles)and I caught one smile from him while she did this. There is a song that we do with the bubbles and it is pretty low tone so we think he most likely can hear it. It goes, “bubbles,bubbles up up up…bubbles, bubbles pop pop pop.” LOL Here are the pictures of the two of them.
Well the therapy didn’t last long. A threw up again and I was a little more at ease because it was clear mucus. But within minutes up came the bile. Deb even noticed how off colour A goes when he is trying to catch his breath after vomiting. So we decided to call it an end and just sat and talked for a bit. A is supposed to go for another hearing test tomorrow and I just hope that he is well enough to go because he has missed the last two because of being sick. I really don’t want things to be delayed more than they already have been. So fingers are crossed that he has a good night and is well enough to go. Also kind of exciting because daddy doesn’t work tomorrow so it will be his first time coming with us for the cochlear implant process. Joyce will be here shortly then I can head to bed and get a goods night sleep.
So after Deb leaving A wanted to sleep again. I cuddled with him for a bit but he just wanted to lay on his tummy and go to sleep. He slept for a couple of hours and then was up again and back to the vomiting. It wasn’t until after 6pm tonight that I noticed that it looks like there is formula in with the bile. This is very frustrating for me because A shouldn’t have anything in his stomach. And considering that his feeding tube goes right to his intestines this means to me that the tube isn’t placed probably. This angers me considering that I told the doc at Mac that when I saw the tube on the screen it wasn’t right. He changed it and it was only two short hours later that we were back in there with him correcting what he had supposedly already done. Let me tell you if I find out his tube isn’t in the right place I am not going to be happy. And people don’t like when I’m not happy. 🙂
So it has been a long day. In total since midnight A has thrown up 21 times.
Another busy day in this household! A was up at 8am which was fine with me because I was already up. For some reason I just couldn’t stay in bed. Grandma got here just after 9am this morning. She agreed with me that his glasses aren’t really fitting him properly so I took him tonight to get them adjusted a little bit. Just after grandma got here he decided that he was going to be a big boy and lift his head!
I did some laundry and cleaning and then A had physiotherapy with Monique. I talked to her today about trying out the stander that I have been looking at so she is going to be calling them to set up a time to bring one over for us to use for a bit. I am so excited! I hope that it isn’t too long, because then with it going through ADP it can take forever. We still haven’t received the stroller that we ordered in November! I hope we get that soon because he is going to need it for his therapy with Deb once he gets his implant. It would be nice to start doing the therapy in it now just so it isn’t totally new to him.
So he did well with therapy today, as always. Monique can never get over how tolerant and well behaved he is. Always nice to hear!
So as Monique was leaving, my aunt and two cousins came over for a visit. Nicole always loves to see him when she can so it was a nice visit!
Daddy had gone over to a friends house for a couple of hours so I laid down and had a little nap before we had to take A to get his 18 month needles. He did really well with them too. His pediatrician is very happy with A’s growth (although he only weighed 19lbs3oz) because he is getting up there on the growth chart. I also spoke to him about being eligible for RSV next year and he kinda winked and told me that we would figure something out. So that made me happy. I also had to get a note from him today to discontinue oxygen therapy. I have been calling and calling the company to come and pick up all of the tanks that we have here and finally today someone tells me that they won’t/can’t until I have a doctors order! How crazy is that? He has been off of it for almost three months!
Anyhow, after his doctors appointment we took him to have his glasses readjusted and then daddy took him to the fish store. He said that A was just looking around there like crazy! All day today we have definitely noticed that he REALLY can see the world around him! His attention span is so much longer! (He already had a great attention span to begin with!) There is just absolutely no doubt in my mind that these glasses are a great thing for him!
Well Joyce is here tonight and I am off to bed! YAY for sleep!
Well grandma was here today so I got to have some time for me! There really isn’t much for me to say for today so I thought that I would post a little bit of information about dyskinetic/athetoid cerebral palsy.
*Dyskinetic cerebral palsy is also known as athetoid cerebral palsy.
*Athetoid cerebral palsy occurs in approximately 20% of cerebral palsy cases.
*This cerebral palsy type is characterized by slow, uncontrollable, and involuntary writhing movements of the hands, feet, arms, or legs. In some children, hyperactivity in the muscles of the face and tongue makes them grimace or drool.
*Children with this type of cerebral palsy find it difficult to sit straight or walk. They may also have problems coordinating the muscle movements required for speaking.
*Intelligence is rarely affected in these cerebral palsy children.
You know, I have been reading so much for so long on this stuff that I get very confused! I thought I would leave what I have but will maybe have more answers later in the week. We go to see the movement disorder specialist and a pediatric neurologist who don’t know A and I really am hoping for some “honest” answers. To me A seems to show MORE signs of Dystonia than athetoid CP (although I do definitely see signs of athetoid CP). But yet some sites recognize these as the same thing. I have a ton of questions that I need answered so when I am able to share information correctly I will do so!
Anyhow, a few pictures from today after A had his foot massage by grandma!! What a lucky little guy eh?
Well A did very well this morning considering that he went to bed last night at 7:30pm. I was going to bathe him last night at 9:30pm but he didn’t even open his eyes when I turned him over so I just changed his bum and then put on his PJs and into bed. Within one minute of hitting the mattress he was out cold again. I was kind of worried because he has never gone to bed that early EVER but he didn’t get up until 5am. I just turned on his aquarium and then went back to bed and when I checked him at 6:30am he was asleep again. He didn’t get out of bed until about 7:30am and by 8:30am he wanted to go back to sleep! Grandma got here at 9:30am and he got up just shortly after that.
I headed out for a bit today to do my own thing. I had a lot of fun and can’t wait to get into the routine of things. When I got back home A was complaining and I knew he was pooped out from all the work grandma made him do! I still cannot get over how much he wants to interact with toys lately! It is so nice to see him wanting to play with them and he tries so hard!
I laid down for a little bit and A headed off to sleep as well. When grandma left I got up and did a few things I had to do before A was up and ready to go again.
The place I have found that was getting in his glasses called so I packed him up tonight and headed over there. I really want to get the ball rolling with this so I figured I would get it over with tonight. They only had two pairs for me to see on him, but the one was perfect! I had to laugh because he just looked so studious! Everyone who knows him knows already that he is a smarty pants but now you will be able to tell just by looking! I can’t get over how tiny they are either! I was going to take my camera with me but I figured that everyone could wait until he got his pair to see the new A! It was really cute too because when the lady put them on him he had the biggest smile on his face. I know he is going to do so well with them and I can’t wait!
You know, he has fooled so many people with so much! First he fooled us all that he could hear and then that he could see perfect. I just can’t imagine what this little man is going to be able to do when he can see and hear! Wow it will be so exciting!
I have done some research these past few days on standers and I found one that I think will work very well for A so I will be talking to his physiotherapist tomorrow about it and see if we can get one to try out. (Thanks to all those P2P moms that have recommended this stander and have helped me out tremendously!) This is the one that I am looking at:
And now for some pictures of the little man working hard at getting the soother and rattle into his mouth!
Well today was pretty busy around here. Grandma came here this morning at 9:30am and we headed out to do something for both of us. (Those of you I talk to know what this is.) We then stopped at Zellers before heading back home.
I laid down to have a little nap before some friends of my moms (John and Lorraine) came over to meet A and visit with us. John is a minister who had been the one that renewed my parents vows years ago.
At 2pm he had his dietitian come to weigh him and talk about his feeding. He still weighs 19.5lbs which isn’t really a shock considering how sick he was a couple of weeks ago. We have also decided to go up on his feed from 44ml an hour to 50ml over the next week and then he will have a total of 7 hours off a day instead of the 4 hours he has now. So that will be nice. Then the plan is to have him off for five in the morning and then try and feed him orally or bottle him. Then whatever he might take will be extra time off. So we will see how that goes. I think a lot of why he doesn’t want to eat now is because he isn’t hungry being on feeds for 20hours out of each day.
At 2:30pm Deb (AVT) was here to work with him. She was very happy with his play skills that he is getting lately. He reaches for everything and you can tell that he really wants to do things. She also noticed that he does have some reaction to sounds now. I have noticed lately with a “ba ba” sound that he will turn automatically. I did ask her how she thought he would do without an implant and just the hearing aids. She said that it is possible for kids to learn to talk but a lot more work because they don’t hear “s” sounds. And with all of A’s other needs it would be even harder for him.
Well that was it for today! Here are some pictures from last night at grandma and grandpa’s house…
Today A and I got up early to drop off daddy at work. He normally hates being all bundled up in his snowsuit but he did well today considering he had to be put in it three times.
Grandma came this morning to work with A. It was nice that she was here with me because I had to take him to get his needle for RSV. He was also supposed to get his 18 month shots but the doctor didn’t want to do them all today so we will get those later this month. A actually did pretty good with the needle. I think it bothers me more than him! When he was weighed he was down to 18.8lbs also. So that means that he has lost 12ounces since the last time that he was weighed. However all scales are different so I am not sure if it was really that much. With how sick he was it kind of makes sense that he would have lost some weight. I’m not too worried about it because it has been so long since he has actually lost weight!
Grandma, A and I then went for lunch at Tim Hortons. After coming home A had a little nap and I laid down for a bit. It is always so nice to be able to lay down and just relax and do nothing. I can’t believe how much I appreciate the little things in life now that I have had A. My mom always used to say to wait until I had my own and then I would understand why she was so tired. Well I know what you meant now mom!
I am very lucky to have the parents that I have! From day one they have been there for me and done whatever they have been able to. My dad has always been the one to take A and I to whatever appointments that we have and my mom works with A a few days a week. It is so great to have them as involved as they are. I know when A grows up he will only benefit from it. I remember when I was younger always wanting to go to grandma and grandpa C’s to see them. Then as I grew older the bond with my grandma was something that can never and will never be replaced. She was a very important part of my life. I always wanted to spend time with her. She passed away when I was 14 years old, and I just wish she could be here now. I know she is in her own way but it sure isn’t the same. However, I do believe that she is watching over us and is very proud of everything in my life that I have accomplished. She is truly one of A’s angels. I love you grandma!
Well good news, Joyce is here tonight. It has been a while since I have been able to sleep all night and not have to get up! And it is to bed that I am headed now…
All bundled up!
Mommy & A
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!
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!