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!
So the issues with A continue as usual at this household. We are having problems with feeding and sleeping and of course along with that comes the awful desats that go on ALL night.
For about the past week the nurses have had to use oxygen at some point with A during the night. I didn’t really think much of it because they have to administer oxygen if his saturations go below 90 for greater than two minutes. Well anyone who knows A knows that this happens A LOT. Anyhow, two nights ago, Friday night was HORRID. It brought me right back to the days when we brought A home from the NICU. I would never want to relive those days, and honestly sometimes I wonder how I even did survive back then.
When I put A down on Friday night and hooked him up to his monitor, he was sitting about mid 70s. He was sound asleep. I tipped his head back a little and he came and hovered around 84. This is NOT good enough. For about twenty minutes I just stood there watching him wondering what the heck was going on. I still don’t know what to think.
I came downstairs and grabbed some nasal prongs, tape and an oxygen tank. Once I got up to his room he went to 91 and stayed there. This is still not really good enough for me because it isn’t the norm when he is sound asleep.
Basically from 1am until 5:30am I was in there about every five minutes to place oxygen in front of his face or to try and move him to a position where his oxygen saturations would be better.
Feeds. I am having so much trouble getting the required amount into him in a 24 hour period. I really wish sometimes that we didn’t need food to survive! As you all know, he has been off of blended food since getting sick in October and gaining weight. I talked to his dietician on Thursday again and she said to maybe try adding just avocados in with the formula to make it a little thicker and maybe that would help go down easier. Well within thirty seconds of receiving only 30mls of food he threw up. He was gagging constantly and I had to pull all of the food back out of his tummy. This is very strange as well because he had avocado every single day in his blend of food.
So in the day time I have to give him a total of 750mls and at night he gets 500mls. This just does not work! I am so afraid that he is aspirating which in turn is causing his lungs to get worse-which we really CANNOT let happen. This would explain the crappy oxygen saturations. Thankfully we are seeing his respirologist in a weeks time and hopefully he will have some insight into what we should do. I know he did speak last time about admitting A into ICU for a couple of days to trial CPAP and BI PAP but I just didn’t think that would work because A has a soother. However he has not had his soother now in about six weeks! Something really needs to be done though because he cannot go on the way he has been.
A weighed in at 27.6lbs last night. Seems like he has stabalized there for a bit so that is good. Much better than 25lbs!
We just got home today from getting his second dose of the H1N1 vaccine. So the continuation of our hibernating will happen for about three more weeks. And even then we have to be careful as he has not had his regular season flu shot! Ugh neverending worry I’ll tell you!
On our way out of the mall where his doctor is we stopped at the one store. I was looking at the Toronto Maple Leaf stuff and a lady was trying to get around me and A. Once she got down the aisle she wanted she turned to me and asked me if I was his mom. I said yes. She held her hands to her chest and with tears in her eyes told me that she admired me. I said thank you. She told me she thought he was a gorgeous boy-ha we all know that!-I again said thank you. And she told me, no thank you for doing what you do. To give him life. I told her he gave himself life. He fought to be here. She gave me a hug and again said she admired me. I said thank you again and told her that it is nice to hear such kind comments from people. Totally made my day. It is not too often that a complete stranger says anything like this to you. Why can’t the world have more people like her in it???
So I have some very exciting news to share with you all! A has gained weight. Yes, you read that right. We have been really struggling with A to gain weight for an eternity. To be exact, about two years he has hovered around 23-25 pounds. It has been very frustrating for me to say the least as I was getting as many calories into him as I could. I have been working SO hard to do the blended diet with him since his gj tube was changed to a g tube last February when he had his fundoplication.
On October 22nd A’s dietician had come to weigh him. He had gained about two pounds since we saw her on October 8th. This was VERY odd to me because Ashton had been sick and was on just formula for the whole week prior to her coming here. As well, instead of the usual 1700calories per day he was getting on blended, he was only getting about 1200calories per day. This seemed VERY odd to both of us. So I agreed to continue with just formula until she came this past Thursday. Low and behold, he gained TWO more pounds! So my little man is now 28lbs!!!! We are not really too sure what to make of this but I am continuing as we are now to see what he will weigh when she comes on November 19th. I told her that if we EVER hit 30lbs I am going to have a huge party! A was 28lbs at one point last August from her notes, however it was one of those times where we didn’t really believe it.
A few thoughts go through my head about this. It seems that obviously A’s body does not use the blended food probably to do what it needs to do. Problems with digestion. Not absorbing properly. Who knows. I feel kind of bad because for so long we have been doing the BD and now I know that obviously he wasn’t getting what he really needed on a day to day basis. I feel like this past 21 months of doing BD and working so hard has been a waste. It sucks when you think you are doing something wonderful for your child and then it doesn’t work out. I really really wanted this BD to be successful because I really don’t like the idea of A eating out of a can every single day of his life. I guess I am just going to have to do what works and what is best for him though right now.
J said to me the other night that he could tell A was gaining weight. And when I really looked, I can tell too. You can’t see his ribs anymore like you used to. Makes this eating out of a can seem worth it!
An update now on Auntie A. She is still in Toronto at the hospital. It will be two weeks tomorrow that she had her LVAD placed. I have not been down there to see her since October 27th when I took J down to see Metallica. When I saw her that night, she was in a lot of pain and really tired. It was really hard to see her like that. However that was expected as she was only two days out of having a MAJOR MAJOR surgery.
I spoke with her last night. First time we have REALLY talked since she has been taken to Toronto. She sounds very shaky when talking and she thinks it is the LVAD because it is always running and it does run at almost 9000 RPM. What a trooper she is. Amazing.
She is pretty scared to come home, as I can only imagine! My brother took her outside yesterday and she said that was really scary. I can’t imagine how she will feel when she does go home. Home is a long way from the hospital in Toronto! It is even scarier for her because the chances of EMS or firefighters even knowing what an LVAD is, is scarce. So if they have to call 911 because they need help, really it probably won’t be of much help. She told me that just down on another floor in the same hospital they had NO idea what an LVAD was.
They practiced yesterday changing the device which is always attached to her. It sounded pretty scary. Basically when you unattach her, the blood flow stops until she is changed to a new one. Then when you start that one up it gives a “bump” feeling in the beginning when it starts up. There is so much for her and my brother to learn!
She is not back on the transplant list yet as it has only been two weeks, but I imagine that she will be shortly.
I just can’t believe what one family seems to go through. My brother is very strong and I am so glad that he is such a big support to Auntie A.
Keep up the prayers for them both!!!!
Well it was one year ago today that grandma, A and I headed to Toronto Sick Kids for his sleep study and ended up admitted. I can’t believe how fast time goes and that it has already been a full year! It feels like yesterday that we were there.
In great news, A’s dietitian was here yesterday and he has gained TWO pounds in just under a month!!!!!!! He has not gained ANY weight in 13months so this is awesome. Nothing has changed except for the type of formula that he is on (we recently switched to Peptamen Jr) hoping that it would help with his emptying and possibly help him with sleeping. Peptamen is much more broken down than the Nutren Jr he has been on. So we are thinking that his body his metabolizing this new stuff MUCH better and letting him gain weight. We will have another weigh in, in three weeks time to see what it is like then.
A’s sleep has been improved this week which I shouldn’t mention because I always seem to jinx myself, but I am hoping that this will continue. I’ll tell you, ever since November it has been a nightmare and can’t be healthy for him nor for I!
This week we have also noticed a LOT more gagging with him. I am not too sure what this is from, but yesterday it was pretty constant and frustrating. Last night at 6:30pm he also had one of his new big spells that he has not had since my birthday on December 12th. They are so scary and I just wish that someone would figure out what on earth is going on with him when he does these.
As for some better news, A continues with his constant babbling. It is SO cute and daddy and I just laugh all the time at him because it is like he really thinks that he is talking. There are definitely new sounds that we are hearing and this is so exciting. Last night it sounded like he was saying “I could”. We are also hearing “b”, “d” and “n” sounds. And actually today is his 18month hearing age so we are hoping for more from him down the road. Like mama!
Understanding. It is really starting to show. Last night he was laying on the floor and daddy was on the couch. I would say “where is daddy?” and he would turn to look and smile. Then I would say “where is hockey?” and he would look at the TV. I kept going and he was just turning back and forth constantly!
As well when someone comes into the house he immediately starts babbling on and on and gets very excited. Yesterday he was doing some OT with his therapist (sitting) and grandma walked in. Well he immediately started babbling and smiling. I really think he is starting to recognize WHO people are.
This kid LOVES hockey. It doesn’t even matter what team is playing, if he sees it on the TV then he wants to watch it. If you are changing the channels and you put it on a hockey game and then change it again, he will complain until you put it back. It is very cute. Well most of the time! haha Gets a bit frustrating when you want to watch a show but he does NOT want to. Seems that he is getting his way VERY much lately! Who wouldn’t give this adorable guy his own way though????
In my last bit of exciting news!!!
Yes, we are pregnant again! This came as a HUGE shock to both of us but we are thrilled now that things have settled in. As you all know, I had a miscarriage on November 18th at about 5.5weeks. Well around Christmas I started to wonder why I had not gotten a period yet. Thought nothing much of it though but it was in the back of my mind. Pregnancy by the way was the LAST thing I was thinking! haha Aunt K had even asked me on Boxing Day if I could be pregnant and I said “no way!” Well December 30th I did a pregnancy test just for the heck of it and sure enough it was positive. Had NO IDEA how far along or anything. Especially since we had decided we were going to wait until after my brother and his fiance get married in May.
So I go to my doctor yesterday. He tells me that it is probably very unlikely that I am pregnant and that the positive result could be meaning that I had some tissue left over from the miscarriage. He said that you usually do not get pregnant IMMEDIATELY after a miscarriage. Well I told him that if I wasn’t then something was wrong because I have been very nauseous this week. So he sends me downstairs for blood work to check my HCG levels and tells me he will call me Monday.
Well I get a call this morning from him. My levels are 56,000!!! He said that puts me about six weeks. So I go for an ultrasound today at 2pm. Well I am 7 weeks and 3 days! We got to see the little peanut and its heart rate was 148. Very cool! So my due date is August 25th….lets pray that this baby waits until August!!!!
I have been seriously slacking on this blog! Things have still been pretty busy since the wedding and getting the house. A has been doing great since coming home!!! I am now back into working up on his blended diet and so far he is doing great. We really need to try and get some weight on him as his dietician is a little bit concerned. A year ago A weighed 24.7lbs and right now he is 24lbs right on. For some reason he is just not gaining weight and it is beginning to be noticeable. I have added in some flax oil which is great and sausage for his breakfast which is a nice 130calories for a small piece! I was very excited about a week ago when I found a soy nut butter however his body doesn’t seem to agree with it. His last feed of the day ends at about 7:30pm and at 10pm his belly still had way too much food. I cut out the nut butter two days ago and last night his belly was fine. I may try to add it again later but I will wait a little bit. I was hoping he would be okay with it as it is 140cals per tablespoon!
He has been doing wonderful in his therapy and is really enjoying colouring. He insists that he does it on his own however which usually leaves him covered in markers. My independant little man. Physio, well not so great. The last few times when she comes he is NOT happy. Last week he screamed and cried through the entire session and it was actually kind of heartbreaking. I think he is really starting to associate things together. So he knows when he sees his OT and PT that he has to work. As well, when the nurse has come the last two times he goes from being the happy boy he is to the pouty boy who won’t let mommy leave the room. I think he knows that when the nurse comes it is bedtime and boy, this kid does not always want to go to bed! This does make me happy though knowing that this is all part of his great development and understanding!
On another note we were at Mac last week to see my absolute favorite doctor, Rosenbaum. He is growth and development and this man is amazing. He absolutely adores the kiddos that he sees and takes great interest in their lives along with worrying about the parents.
I finally got up the nerve to ask him about the domperidone issue that A had in the NICU. He told me that he was going to talk to two of his friends who are also docs to see what they thought and to see if they would have any info for me. Well he sure does follow up quickly as two days later I had a response. We may be onto something here!
Yesterday we were back to our regular busy schedule around here. A had his dietitian come along with his OT and PT. His PT Monique was here first so she started to do some work with him but he was NOT happy. Shelley then showed up (OT) and he was just getting way too upset for me to let them continue. He was going very off colour and I was worried that he was going to go into one of his spells. Liz showed up so we got A naked (his fav!) to get his weight. Well after about 15 minutes on the scale we could NOT get a weight on him. He was way too excited and just wouldn’t sit still long enough for it to read his weight. So by watching it and guessing he is the same as he was a month ago. Fine with me!
He then went back to trying his work with PT and OT. He did great!!!! Look at my amazing guy!
It was great too because daddy was here and was helping them while I talked to his dietitian. He never gets to see what A does and how great he is for them. He was actually doing VERY well at being on his knees and hands (with three peoples hands of course!) Monique is always so amazed with him and told us yesterday that she does not know very many kids that have such severe CP but yet are able to open their fingers and hands to grasp things. That’s my boy!
Daddy and I had some running around to do yesterday and then we headed over to see Sean and his mom Mary. She brought out Sean’s first wheelchair and it is SO cute!!
So after seeing how well A sits in it Mary said that she is going to get some new tires for it and that we can borrow it!
Sean absolutely loves seeing A! It is so funny how he worried about everything with A and what he is doing. Mary was holding A but Sean sure didn’t miss a thing! He kept telling her to be careful because of A’s back (the arching) and his implant kept beeping so he would tell her that it wasn’t working. He is a very curious guy and always has lots of questions about A. Like why he goes blue. Why he doesn’t talk. Why he shivers. So cute.
Well another busy week is over! Wednesday A had his PT and OT here together because we finally got him a benik to try. I have been asking about this for a long time but I find that sometimes people really haven’t done the research or learning on things that help kids. Anyways, his new OT happened to have one at home when I brought it up again last week so she brought it over. I wasn’t really able to see what he did for them with it on because his dietitian was here so we were chatting while they did his physio. However I did definitely notice some more stabilization of his trunk when I put it on him that afternoon. The only problem is, this kid is the hottest, sweatiest kid EVER that it just makes it ten times worse. He weighed in at 24lbs 7oz so up three ounces which is fine with me. I am so past the gain and gain idea because I have realized that if the child LOOKS healthy then they most likely are getting enough nutrition.
Here he was on the scale. Kind of funny that he was so happy as usually he goes very stiff and starts to scream. It took about five minutes before we were finally able to get his weight as he wouldn’t stop moving he was so excited!
So here he was sitting in his chair with the benik vest on underneath his shirt. He loves this slinky and anyone who knows A knows that holding this with BOTH hands is a HUGE accomplishment! Go A!
Thursday grandma and I headed to Kitchener with A to go to Toys R Us. That store is SO overwhelming! I did find a few things for A and I am so excited for Christmas to come! This will be his first Christmas here at home and I am looking really forward to it!
Friday I took A to his ped to get the other half of his flu shot. He didn’t like it too much but he is a tough little guy so he got over it quick. I was speaking a bit more with his doctor about the spell A had a few weeks ago (he was the one that came to the ER and told me he thought it was a seizure) and anyhow he said that the more he thinks about it the more he doesn’t think it is. This was after I told him about the echo last week and how A’s sats were so bad after only a whiff of nitrous. Ugh talk about being thrown in all directions! I have some telling me seizures (funny though because THREE neurologists that have said YES this was a seizure have all said DIFFERENT types) and some tell me airway and some say reflux and some say they don’t know. Where is my Doctor House?!?! LOL
This is what I am greeted to every single morning when my little man wakes up…
Today we had a pretty lazy day. A didn’t get up until 10am and then by 11:30am he was fussing to go back to sleep. I however kept him busy and up until about 1pm and he slept until about 3:00pm. His naps lately have been AWESOME! Although yesterday he skipped his nap for the day and that is probably why he got up so late today.
HE ALSO SAID ‘DADA’ AGAIN TODAY!
Daddy got home about 4pm and we got ready to head out for the annual Christmas gathering that we go to with my parents and their friends. Uncle S, Auntie A, Aunt Shorty and Rob all came this year too though which was a first.
I had a “moment” tonight there. Funny how things creep up on you when you least expect. There was a girl there that had two kids. I can’t remember how old the oldest is but I would guess about 18months. The little boy was a new addition and as I walked by to the kitchen I stopped and asked how old he was. The answer I got “he is 5 months old….he was a preemie though.” So of course I am curious and say “oh really how early?” And then she says “five or six weeks…I can’t remember. He weighed 5lbs 2oz and spent two weeks in the hospital and it was so hard on me. It is all such a blur to me now but I was exhausted. He has to have a surgery too for a hernia.” So I of course am blown away because of the fact that she is going on and on about this when she KNOWS my story. I eventually stepped away and when I saw my mom I started to cry. I went into the bedroom and I was just angry. Now I TOTALLY understand that for ANY mom who has a child early and spends ANY time in the hospital this would be a big deal. But when you are telling this to a mother that you KNOW spent nine months in the hospital with her baby that weighed under two pounds it gets to me. And when you know that her child has severe disabilities…when you know her child is deaf…when you know her child doesn’t eat by mouth. I just don’t get it. Do people not see past themselves?! These people really need to realize just how lucky they are. How their situation might have sucked in the beginning but really in the big picture it is so tiny. Anyways I don’t want to go on and on about it but I know that most of you who read my blog understand this.
Here is my little man holding his bells! (By the way, I would say about three months ago he couldn’t even come close to holding this!) He is funny now too, because when he sees you going to give him something he opens his thumb up…its really cute.
Well the whole ordeal started yesterday afternoon. A went down for a nap at about 1:30pm. It was very restless and he just was not comfortable from all the gas that he has been getting lately when he tries to sleep. At 4pm he was awake so I started to get him ready to head over to grandma and grandpas for dinner. When I went into his room to grab his clothes I heard him gagging. When I came out he did a HUGE projectile vomit of formula. Yes, formula. I never understand how he does this WHEN he does it. Anyways, he was happy and smiling after so I just figured it was a one time thing.
We noticed after it happened that he sounded very congested/wheezy and I just thought it was from the vomiting and he still had some in his airway that he couldn’t get rid of.
At grandma and grandpas he was good and the happy guy he normally is. Here he was sitting with us while we ate…
When we got home last night he was fussy and seeming to sound worse. When I put him into bed he had a couple blue spells from trying to breathe. I knew then for sure that something more was happening with him, possibly from aspirating the vomit. J stayed up with him so I could at least get some sleep. Even with my door closed I could hear A in his room trying to breathe, it was SO loud.
Finally at 3am J was able to come to bed. 3:30am I was up with A. I called and left messages for his physio, OT and speech therapist to tell them that I was cancelling their appointments. Liz came (his dietitian) and he is now 24lbs3oz. I had told her about his vomiting and how he was sick, had a low grade temp, blue spells and asked if she thought he could have aspirated. She said it was possible. I called his ped and got him in to him for 4pm. Well turns out that A did aspirate. He is now on steroids for four days and an antibiotic for ten days. We need to be on the safe side so that it doesn’t turn into aspiration pneumonia as that would be an absolute nightmare for him. We will be going back to the doctor Thursday and hopefully he is better or else he will be admitted.
When we got home I took his temp again because he felt so warm. It was 105! I gave him some advil, used a cool cloth on his head and cuddled with him. As of now his temp is back down to normal and his breathing is a tad better. His nurse is here tonight and she said he still sounds very tight and wheezy. It is going to be a long night I am sure but I am off to bed for the entire night!
My poor baby…
Well it has been a crazy few days here! I haven’t blogged in a while so I have a bit to update on. First, still no luck yet with getting A covered for RSV season this year. I have a couple of calls to make today that will hopefully get me somewhere.
Thursday night was a nightmare here as A once again had a pretty rough night. I am not too sure what is wrong with him when he does this, but he is VERY fussy and just not comfortable. I really can’t wait for this sleep study! I think he might have had an upset tummy because his tube site was bleeding and Thursday night before going to bed he had been vomiting a lot of formula. At one point it looked like a whole entire can. I diluted his feed for about 24hours when he was acting better and had not been vomiting. But thankfully it never turned into anything more and he is fine!
Saturday grandma and grandpa S came down to spend the weekend. They got here just after noon and we headed over to Uncle S and Andrea’s house for their housewarming. A was pretty tired but had a hard time sleeping as there was way too much going on.
After leaving there we all headed over to grandma and grandpa C’s for dinner. We had our “wedding talk” and have some plans in place. Now I just need to get my butt in gear and start making deposits and reservations! I can’t believe how fast time is going and cannot wait until the day that I get to walk down the aisle!
Sunday, A went to the Storm game with daddy and grandpa and grandma S and I headed to Kitchener to the wedding show. I was glad that I went because I found an awesome photographer, a fabulous cake decorator and even got some great ideas for things that I want to do!
At the game…
We got back around dinner time and then we all headed out to eat at Shoeless Joe’s. Grandpa and grandma S then headed back home and we came home to head to bed. A had other plans last night and decided he wanted to stay up until 11pm! I am happy to say that I only got up ONCE with him last night and I actually had to wake him up this morning for physio and OT.
I couldn’t resist these pictures before waking him up!
So we started the breathing treatments with the nebulizer for A on Friday night and they are going well. The first time that he had one he was pouting and didn’t know what to think. This morning he actually didn’t need me to sit and hold it for him and he just watched the TV. I can’t say that I really notice a difference with the treatments yet compared to the puffers, but I do know that he is getting more of the meds this way than the other.
This morning A had Monique and Shelly here to work with him and he did VERY well!! Check out these amazing pictures!
After physio and OT A had his nutritionist here along with his speech therapist. Yes it has been a crazy house already and we still have his auditory speech therapist this afternoon!
Anyways, A now weighs a whopping 24lbs 1oz!!! That means he has gained 22 pounds and 8 ounces since he was born! That also means he went from 710 grams to 10,931.58 grams! WOW! She also measured him today and he is 80cm which is 31.5 inches. At birth he was 10.5 inches or 26.67 cms!
His speech therapist David and I decided we are going to wait on the feeding study to decide when he will be coming back.
So today is the day that A would have been 2 years old had he of waited until his due date. I still can’t believe how many people ask me if we use his “real” birthday or the birthday he should have had. I mean what sense would it be to celebrate his birthday on a day that means nothing now?
It’s funny too about this whole actual age and corrected age. In the past people would ask how old he was and I would say “well he is 5 months old or 1 month corrected…or he is one but 8 months corrected.” But now that just seems to be a thing of the past. The corrected age doesn’t mean anything to me anymore. I know that the doctors still use it but I don’t see the sense.
Today isn’t a great day though. A is still pretty sick, has the fever now and will be going to the doctors tomorrow. Physio was here this morning with OT but he didn’t do very well. A lot of blue spells and crankiness. Nutritionist was here as well. He has actually lost a full pound!
Now some reminiscing…
My journal entry from October 1st 2005:
Well sweetheart today was the day that you were supposed to come! You are 16 weeks old now or full term. And you are still so tiny.
I am exhausted and really need to sleep. I must have been last night too because I didn’t even write about your upper GI yesterday! It went good and you handled it well. This is good because I was up all night worrying about it because Danielle said she thought you would misbehave. But you didn’t! So the results show that you have severe reflux and I am not sure yet what they are going to do for you. There is some talk of a stomach tube to feed you but Marg told me that it won’t stop your reflux so we will have to wait and see.
Today went good for daddy and I. We got our new apartment and we both love it! It is really nice and I can’t wait to move all of our stuff in tomorrow. I am really excited though because we finally get to do your room!
Janice was on with you again today and you were doing well every time that I called to check on you. I miss you and can’t wait to see you to give you kisses! I love you sweetie. You will have a good night because Kris is on with you. Makes me more comfortable too knowing that you have great nursing while I am here in Guelph! Oh and you were 1989 grams tonight!
And from October 1st 2006:
Well this morning we drove daddy to work and then came back here and you had a nap. I had to wake you up at 10am to get you ready for your music class. You actually were really good there today for the first time. Both of the other times you were tired and fussy. You were full of smiles. Then grandma came and picked us up at 1:15pm and then we went and got grandpa from work. We were in Hamilton for 2:30pm for the meeting. It actually went really well. Dr. Meeny did admit that he believes that the domperidone had something to do with your problems but went on to say that he believes there is something else as well. He was very impressed with me and my knowledge of everything. He was also impressed about how supportive grandma and grandpa are. Dr. Sant’Anna is going to book you for a swallow study and a ph probe study to see how bad your reflux is. If it is better then we are going to change your gj tube to a g tube. And then we can work on more oral feeding and hopefully get you off the tube altogether. I am just really nervous about you having spells again. But maybe since you are older and your reflux is much better with the prevacid you won’t have a problem. She did also talk about the surgery as well. It is called a fundoplacation. She said normally the g tube is done with that to help the reflux even more. Dr. Mesterman is going to step back now since you aren’t on medication and just let Dr. Rosenbaum deal with that. She said that it is basically the same stuff that they deal with. So we’ll see how things go with him next week. She also was discussing your CP and her along with Dr. Meeny aren’t comfortable saying that it is CP. So that is frustrating. Hopefully Dr. Rosenbaum gives us some better answers when we go next Wednesday. We went upstairs afterwards and saw Rosemarie. She hasn’t seen you since you left. She couldn’t believe how big you were and how good you look. It is nice to see people that we haven’t seen in so long that were so great with you.
Oh it is so funny to look back at some days…..just shows me how much I have learned even in this past year. Not cerebral palsy? Domperidone? Fundoplication?
I love you little man.
Yesterday I took A over to Alina and Sophia’s for a long overdue playdate. The girls birthday was on August 13th and I still had not given them their presents! It was a really nice day so we spent it outside. A was not the happiest boy though so things didn’t go as nicely as I had wished. But hey, that’s what happens sometimes with kids.
Sophia and A on the swings…he wasn’t sure what to think at first as you can tell but he then changed his tune…
There are the smiles!
Sophia giving kisses…
Alina woke up for some playtime however A wanted to sleep…
Haha way too cute…
Sophia opening her present…
Alina and her thumb!
Alina opening her present…
After leaving there we headed over to Mac for his appointment with a respirologist. I should add his FIRST appointment with one which is VERY odd to me considering that he was on oxygen until 18months of age.
Anyhow, I was not going to go because I am seeing a pulmonologist next month at Sick Kids but I did go. I am very happy that I did as well. She was a very good doctor and totally listened to everything that I had to say. She didn’t rush me and was very interested in A. I was basically sent to see her because of the whole fundo idea. However I am happy to say that she agrees with me that the fundo is not the route to go! WOO HOO someone on my side!
The first five minutes she spent just looking at him and watching him. Then she turned to me and said “you take very good care of him.” I didn’t really know what to say as I have not heard that from a doctor that I don’t know at all. I said thanks and she said “really, I can tell just by sitting here that you do. And even his shoes match his shirt.” LOL Yep that is me! He is a stylin boy, I can give myself that much.
She thinks that A’s reflux is basically all upper airway which means that a fundo would not help him at all. Hmmmm what I have been saying for months? Basically it is like he is pooling all of his saliva in his upper airway and then he will gag and it comes up. I have been saying for about a year now that I don’t think what he is vomiting is coming from his stomach. It is too thick and just doesn’t seem like it would be. The odd time he does vomit formula which is a big deal considering he has a gj tube but it is very rare for this to happen.
She also asked me who decided that not feeding him orally was a good idea. LOL Well long story short that was taken away from him when he was readmitted after only four days home from the NICU. I had NO say at all and this is when the nightmare began.
Another question she had was why he hasn’t had another scope of his airway done. The last time was February of 2006 while in the ICU. Well I had asked for one but I was told that it was unessary testing. What else can I do? I think she got the hint that I was REALLY frustrated with doctors and the care that A has received. I always feel like I am going in circles and it is so hard to keep fighting for what I believe in when I get no where. I had also told her that he had laser surgery on his airway in December of 05 and when he was readmitted the same surgeon/ENT told me that his laryngeal malaysia was back. Back??!!??! She was confused! Now I am even more confused than I ever was too.
Next question. Why hasn’t he had another echo? Hmmm well we had pre-op for an echo in March of this year. STILL haven’t heard when it is. I have called and I just get told that they need OR time and until something is cancelled he has to wait.
The echo came up when we were discussing his ALTEs-apparent life threatening events. Why she wanted to know has no one looked further into them? Hmmm I have been wondering that since they started happening. Being told by a doctor in ICU that what A does scares him and that he has no idea what to say doesn’t make me feel much better. Being told that every time these spells happen there is a chance that he will not come out of them isn’t helpful either. Being told to make sure that I know CPR doesn’t help either. Besides if the ICU can’t bag him and get air into him during a code blue then how the heck can I do it here at home?!?!?
I feel like I might finally be getting somewhere. I think that maybe, just maybe I have found someone that WANTS to help A.
A waiting for the doctor at McMaster…go figure, now he’s happy!
Laughing away at something…
A with Bonnie from the NICU. We had not seen her in almost a year and she couldn’t get over how big he was! She was an awesome nurse and very caring and true.
A last night before he went to bed sitting with daddy. A loves daddy time at night and is always so much calmer with him than me. I guess it is a nice break for me though 🙂
So our holidays are over now. We headed down to C-town on Friday to spend the weekend with grandma and grandpa S. Aunt K also came down to visit with us. It was great weather and A got to go swimming again!
On Saturday morning Aunt K and I went for pedicures. It was my first time ever getting one and it was so nice!!!
A in his pony walker and getting kisses from Cujo…
On the car ride to C-town…
A sitting outside looking as cute as ever!
Hanging out with grandma…
Pony walker time!
Aunt K entertaining him…
A and Rocco…
Being the silly little ham he can be!
A absolutely LOVES bath time and grandma LOVES to give him baths! He had water everywhere and grandma was a little wet too. 🙂 Grandpa helped out on this one too…
A trying to rock his chair…
We got back late on Sunday night and A went right to bed. Yesterday A was back into his regular busy schedule with appointments and workers.
Playtime with Shelly…
Today was also the first time that he had his auditory verbal therapy with Deb again. She had seen him last before his implant surgery and now we are back at it. With having the implant now, we have to sit around the table with him so that we can all take turns making the sounds or singing to A. He wasn’t feeling the greatest but did a great job. He started to run a low grade fever and his vomiting was starting.
Therapy with Deb…
Burn Rubber baby!
Last night was pretty rough for A. He was up vomiting a lot and it is obvious that he just isn’t feeling well. He had physio this morning and pretty much the whole time he had his eyes closed and was fussing. Liz was also here to weigh him and he is 22lbs 9oz, so down one ounce from the last time. This is the second time in a row that he has lost weight. Not too concerning to me though as he looks very healthy. We also measured him and he is 31 inches! That means that he has grown by two inches since last time!! Could also be the reason he isn’t gaining. Not to mention the fact that this little guy is constantly moving around! I cannot get over how active he is during the day now. If he could get up and run he would!
So the implant was turned up to the next program on Sunday. He has done well with it and isn’t jumping when it is turned on. Deb was very pleased to see how well he is doing with turning to sounds already. I cannot get over how much his being able to hear has changed his personality. He pouts a lot now and can even act scared of toys or different things. This was something that he NEVER did before!
At day 16 of hearing age I am very impressed. I was thinking that I wouldn’t notice anything for a long time but I already can. Recognition and imitation is going to take much longer but hey that is okay because all that matters is that my little man can hear now! I am so amazed at what this has done for him!
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!!!
Well, only five days until my little man turns two and six days for his cochlear implant surgery!! A very exciting week ahead that is for sure!
Not much going on around here lately. He has gotten over his fever and vomiting of formula so hopefully it was all related to whatever was happening in his body. The last thing that we need is for him to get sick and not have this surgery that we have been waiting forever for!
He got weighed today and yes he still continues to gain…no wonder he is getting so heavy! I thought for sure he was closer to 25 pounds but I was definitely off a little bit there.
Some pictures of A and Joyce last night. He is really starting to take interest in books and thought it was hilarious when she would make the book shake…it was a pop up book which makes him love it even more!
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 last couple of days around here have been pretty quiet for a change. His dietitian and OT were here on Tuesday. Liz, his dietitian wants his feed up a little bit because he didn’t really gain any weight in three weeks. Seems kind of strange to me since he hasn’t been vomiting now for 11 days! He is now an even 22 pounds. OT did some work with him, but if she doesn’t step it up soon I will be asking for a new one. I don’t have them come here to chat with me and make friends and I feel like that with her. She doesn’t do much work with him at all because she is always too interested in just talking. So when she was here the other day I stayed out of the living room and talked to my mom so that she would have to do SOME work with him. Even Liz said to A that Monica(OT)wasn’t working him very hard and she said that she leaves that for Monique to do. Monique is his PT. This is not the way that it is supposed to work though at all. They both need to work hard with him considering that I only get them every two weeks!
So A has still been doing great with his sleeping. Yesterday morning was another 11am for him and today was 9am. Joyce was here last night and this morning said that he wasn’t like he was the last night she was here (where he slept RIGHT through) but definitely better. His naps the past few days have also been great. Tuesday was 3pm-6:15pm and then I woke him up. And yesterday was 3pm-5pm. This is wonderful for A!
Daddy and I took him out the other night to try and find a bike trailer. Of course no luck again. He would be fine in the one we tried the other night if he didn’t have to wear a helmet but he needs to so it is tough to find one. However, yesterday on the Internet I was looking through them all and I found one that has a reclining back with a hole for where the back of the helmet would be! So I am excited to go and look at this one and see if it will work. Maybe tonight if daddy is home soon enough for us to go and see it.
Anyhow, some pictures of my little man from the other night and last night with Joyce.
Look at how serious he is! He LOVES books now and you can tell that he is really thinking…so cute!
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 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.
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.
Well I forgot to post the other day that A is now three ounces away from the big 20 pounds!! I can hardly believe it!
Today I woke up not feeling the greatest. Joyce left at 8am and I crawled back into bed since A wasn’t up yet. To my surprise he didn’t get up until 9:30am so that was nice for me! Grandma was here just after 10am and I did some cleaning that I wanted to get done.
I have come down with a nasty cold and of course I am even more nervous about it all because A never got his RSV shot yesterday since I had to go to Hamilton. They had told me that if I got back to Guelph before 5pm to just bring him in and they would do it, but of course I had to deal with a bunch of bull so I wasn’t home until after that. So he won’t be getting it until Monday and that is almost one week after he is due for it. So my hands are already all sore and red from washing so much and using sanitizer.
Yesterday I had to cancel his appointment as well with his physiotherapist and the lady who was bringing the standing frames. That really bothered me because I have been waiting for what seems like forever to try these out! I received a call last night from Monique saying that the lady who was bringing the frames was in a very bad car accident and the standing frames were actually snapped it half. So, needless to say it will probably be a few more weeks now when we get A into them to try.
Here are a couple of pictures of my little man sleeping today….so cute!
And my little man on his new pillow smiling as usual…
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…
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!