Well A is now 5 years old. We celebrated on the 13th with so many people! And thankfully the rain held off and it was a good day to be outside. I was really excited that his little girlfriend was able to make it. She has not been able to come to one of his birthdays yet as she was usually not well enough to attend. A big thanks to everyone who came out and made the day so special!
***Pics will be within the next couple days…still organizing***
In some SUPER DUPER exciting news about A….he has finally gained weight!!! Yep, you read that right. He is no longer the 25lbs that he has been since pretty much December of 2007.
After we received his biopsy results in April, I had told his dietician that IF they were negative I was going to a blended diet. Well guess what? The biopsies were negative so on April 30th I started him on just blended food. NO formula at all.
I had done the blended diet in the past, but I always used formula as the base for it. I could never understand why he still didn’t gain and on the blended diet group he seemed to be the only one still having issues. Well some great people there told me that they didn’t see a difference until they got rid of the formula completely.
So April 29th was his last day of that junk.
A is doing AMAZING on the blended diet. He gets rice milk, blueberries, green beans, peas, avocado, honey, half and half cream, whipping cream, hemp seeds, almond nut butter, applesauce, orange juice, yogurt, chicken or beef, oatmeal, ancient grain cereal, eggs….pretty much whatever works.
When he was on formula, the quickest that he could take food on his pump was at a rate of 160mls/hour. Now on the BD he can take 280mls/hour. I still can’t believe it.
So I assume you want to know his weight right?! Well the other morning he weighed in at 29lbs!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I NEVER thought this child would grow!
And to make this BD even more exciting, I have now gone down on his prevacid to a dose that he has not been on since he was a year old! He is on 15mg right now and hopefully I will be able to take him off it completely soon. This child has NEVER not been on a reflux medication so this would be great in itself!
Some other great A news. He is now doing things that he has not done or didn’t do as much. In the past he used to roll over maybe a few times a month but it never seemed purposeful. Well he is a rolling machine. AT LEAST give times a day! He is also learning with his PT and OT to be in a position on all fours and doing most of the work himself. Yes, thank you again tracheostomy! 🙂
In some not so exciting news, school. I again was at the school last week to meet with everyone involved. It was the first meeting at the school that he will be going to. The principal absolutely rocks and I love that he is so genuine about wanting to have A at his school.
Every meeting goes fine until we get to the nursing issue. I hate hate hate the fact that he even has to have a nurse with him at school. But because of the trach we do not have a choice. However all of you know that have spent so much time in hospital that just because you are a nurse doesn’t really mean much.
Sure, when you are new to the hospital system you usually think of a nurse as a nurse. Well not me. I have had SO many issues with nurses over the years that I have learned that you can have the schooling but it doesn’t mean that you should be allowed to be a nurse.
Well my nursing agency just seems to make this really difficult for me. I am not getting the nurse that I requested (after they were all for it), but instead they have gone and hired a nurse that she thinks will be wonderful. My view….I will believe it when I see it.
So once I got over the fact that she had hired a nurse specifically for A I asked when they would be starting. I really think that anyone that is going to be working with A without me around needs A LOT of time to get to know him. He is not an easy child to get to know and he can make things difficult.
I was told that the nurse could do Monday, Wednesday and Fridays for six hour shifts. Starting end of July. This would go until October when he would then be entering the school system. Okay, perfect.
Well two days later I get a call from my case manager. She never approved that. And in the big picture, she can’t.
I am sorry, but what the hell is this nursing agency thinking?! This is just not okay. You should not tell a parent something until you know that it is something that is going to work FOR SURE.
This lady I deal with does not impress me at all. Has not impressed me since the night I met her. (See, I do read people well!) So needless to say I called to ask her what the heck to do. One month is NOT long enough at all for a nurse to come in here and learn to be with A. “But she is an RN”……for crying out loud, THAT MEANS NOTHING!!!!!!!!!! Anyone can go to school and get “training” but that doesn’t mean when you come to do it on an actual person that it is easy! And especially with a child that has such severe cyanotic episodes.
Anyways, I am thrilled beyond belief to say this. We met his school nurse the other night and she is perfect! I have been VERY good with feeling people out and I knew the minute I saw her that this would be a great thing! She really reminds me of Ashton’s primary nurse from the NICU which is kinda funny but I am just soooo excited about this!!!!!
She just finished nursing school last May and is currently working in our home hospital on the surgical floor. However she just did a mission trip and realized when she came back that she wants to work with children. When she saw the ad for a school nurse needed for a child with special needs she applied right away.
The young thing really freaked me out at first but then I got thinking. The young ones are still learning. They are not set in their ways. And I think will be more fun for A.
She has never worked with a child with special needs, let alone one that has a feeding tube and a trach. She will be doing her trach training with A’s RT on July 8th and hopefully will start coming here on the 26th of July. We just have to figure out the private nursing thing.
I was very clear with her about what we want and what we don’t want. I don’t want a perfectionist. I don’t want a nurse that is TOTALLY by the book. I don’t want a nurse that is all about his medical needs and so focused on them that she cannot enjoy him.
Anyhow, I think this is going to be just great!!!!!!!!!!!!! She definitely has a lot to learn with A but she did say before she left that she is very excited to do her training, to learn about A’s history and get to know him. I just know she is going to fall in love with my little guy and they will be a great team.
Five years ago today A came into this world at only 24 weeks. I remember it like yesterday. I remember how scared I was. How oblivious I was to what was happening. I remember my midwife checking me and looking at me with sadness in her eyes telling me that she was sorry, but it looked like I would be giving birth that day. Of course I had NO idea that at only 24 weeks a baby could survive. I cried. My mom cried. I thought I would be saying goodbye to my baby. I remember seeing A for the first time. The love that I felt was just incredible. I never knew that a love like this was possible.
Since that day five years ago my little man has proved over and over how he has an amazing strength and fight in him. There are many times that he has defied the odds and survived. Many times we were told that he wasn’t going to make it, and he has.
I remember one time in particular, he was about a month old and I walked into the NICU and there were many people around his bed. His main doctor looked over at me as I washed my hands and just shook his head. My heart was pounding. The tears started to come. I knew it wasn’t good. A was very sick. His kidneys were shutting down. A was doing some “weird” things that they had never seen before. I was told that there was basically no hope that he would recover because of how sick he was. I sat beside that bed and prayed. Around 10pm that night he was settled and stable so I went back over to the Ronald McDonald around midnight to get some sleep. They would call if there was ANYTHING.
I never got a call. I went in the next morning and again his doctor was at his bedside. Only him though. When I walked over to him he was shaking his head again. This time in amazement. A was already a lot better than he was. My boy. My tough tough boy.
This child has been through so much. 227 days in the NICU. Hernia surgery, g tube surgery, countless pokes, IVs, antibiotics, scopes. Kidney failure, domperidone toxicity, severe dystonia, group B strep, sepsis, spinal taps, catheters, code blues.
Only home five days before being readmitted and ending up in the PICU on a vent. GJ tube surgery, CT scans, PIC lines, cut downs. Diagnosis of cerebral palsy, severe reflux, being legally blind, profoundly deaf. MRIs. Cochlear implant surgery.
Many hospital stays full of tests.
88 days in Sick Kids to try and figure out his “blue spells.” Ph probes, sleep studies, bronchoscopies, lung wash, fundoplication surgery, hiatal hernia repair. Helicopter ride after being intubated and in respiratory failure.
Skin biopsies. Muscle biopsies.
Surviving basically being on his death bed here at home as I cared for him. Holding him during the night crying my eyes out telling him that he needs to breathe. Begging him to breathe. Telling him I love him and how sorry I am for what he goes through. Telling him I try to get help but no one does anything. Knowing that he is TRYING to breathe but he is struggling SO much because he is so sick. Wondering if he is going to take his last breath while I hold him in my arms.
Struggling through those exact times where I know he needed help but not getting any. Laying side by side on the couch for two weeks as I make sure he has enough oxygen, doing deep suctioning, breathing treatments, watching his turn blue countless times. Holding him, crying, being beyond tired. Feeling his body stop moving countless times as he survives yet another blue spell. Almost begging his doctor to admit him but not being done.
Going into ICU for a trial of bipap to help with his severe sleep apnea. Ending up with a tracheostomy.
AFTER ALL OF THIS, HE IS HERE. HE IS ALIVE. HE IS MY LITTLE MAN.
Despite his tough life, despite his challenges A is amazing. He is happy. He is loving. He is determined. He is strong. He is a fighter. He loves life. He has taught me so much. It is him I can thank for the person that I am today. I cannot even imagine what my life would be like without him in it. Sure there are times that I wish he was running around and doing what a “typical” five year old would do. Sure there are times I wonder why on Earth he goes through what he does.
But in the grand scheme of things, he is perfect the way he is.
If he was not born early, if he had not gone through what he has in his life, I would definitely not be the woman I am today. God definitely has a plan for us and so far the ride has been bumpy but it has also been full of happiness and joy. Learning and love.
He has stengthened the love, devotion and relationship that J and I have. The midwife told me when A was born “June 10th….that means he is a gemini….an air/wind sign. You and J are both Sags….fire signs. The wind always makes the fire stronger.” I will NEVER forget that. That was about five minutes after A was born. Thank you Martha!
I am one of the luckiest moms in the world. I was chosen for this path and I know that God made the right choice when he gave A to me.
Thank you A for being the child you are. Thank you for your smiles, your cuddles, your laughs. Thank you for being so strong.
And don’t ever forget. I promised you the day you were born that I would fight for you. I have fought and will continue to do so as long as I live.
The happiest little boy that I know.
Happy 5th birthday monkey.
I love you.
Oh where to begin!!! Well let me think back to my last post. Things have been pretty good around the S house this month (minus the nights! LOL).
December 8th I went to see my high risk doctor for my pre-pregnancy appointment. I absolutely LOVE this lady (she delivered A) and I felt very comfortable meeting with her and talking. I of course had to take A with me and well you can imagine how much fun that was. This kid does not like to sit still in his wheelchair and let us all know how upset he was about it!
Anyhow, things went well and she agreed that she would take me on for sure once I have a “viable” pregnancy after eight weeks. The plan will be to see her at least every two weeks for cervix ultrasounds to make sure that all is good there. We do not know why I had A early so she said that putting a stitch in the cervix would not be her first choice for me as that can cause issues on its own. IF for any reason my cervix started to thin out or open early then this would be something that we would definitely have to consider.
As well she would like to start progesterone suppositories around week 16. New studies are showing that it can help prevent pre term labor so this could be a great thing. Sounds like we will be getting to see the little baby a lot with all of the ultrasounds that I will have to get!
I told her about my miscarriage that I had a few weeks before seeing her but she was not concerned about it at all. Kind of put my mind at ease because I was a bit panicked about having one. However she said that it is VERY common and they would only become concerned if I was to continue getting pregnant and having miscarriages.
We also discussed the bloodwork/tests that is done in week sixteen for downs, spina bifida etc. I have been very adamant that I do not want these tests done. They are not 100% and there is no way that I would EVER have an amnio done so doing the initial testing is pointless. I don’t think I know ONE preemie mom that would have an amnio done. Besides, if I am meant to have a child with anything they are testing for then that is what will happen.
There was a bit of drama going on here in my Internet world as well this month. I have (should say WAS) a part of a group of moms that talk on a forum. I was in this group for three years, was a very active member and even donated money to support this group. I met MANY wonderful moms there that I felt like I “knew” and talked about some of them to my family and friends. Anyone in a group like this knows the closeness that you can feel.
Anyhow, I went to sign in one morning and it said that I was banned! I was a bit confused thinking to myself “how and why??” so I emailed the lady who developed the board to ask. The only explanation that I received was that “after some investigation, my story of A does not add up and what I say he does is not physiologically possible.” So I emailed her back saying that everything I say A does is VERY really and that obviously she has a lot to learn about medicine if she is saying that this is not possible. I wanted a better explanation. But to no avail. That is all I got.
Needless to say I was very angry, hurt and upset that this was happening. I think more so because of the friendships that I had formed there.
Well a couple of days later I get told to go and look at the forum. Now normally when someone is banned it is kept private. If anyone was to ask about me they would be sent a message PRIVATELY about what happened. Well this lady took it upon herself to post a not so nice message to the entire group about me. Basically it said that after some investigation they had to ban me as what I say is not real. That some moms make their children sick. That sometimes moms find information about others and use it as their own. I literally felt my heart go to my feet and thought that I was going to vomit.
The worst was yet to come. MANY MANY (think over a hundred) people replied to this post saying things like “oh my god I had no idea”, “I hope she gets the mental help she needs”, “I hope and pray A is safe”, “doesn’t surprise me” ….you get the picture. These were women that I have talked to and shared things with. Women who I thought were “friends”. It was so very sad that all of these women were believing ONE person. ONE person who never even followed Ashton’s story. ONE person who runs everything and can get rid of you just like that.
Over time though I have come to realize that I don’t care what they think. I know that I am a great mom, I know that what A deals with is very real. I know that my “real” friends support me. And I also know that ANYONE who believes this “lady” has no idea either.
Next came our visit to Sick Kids. We had a meeting with A’s team because of all of the issues he has been having since the beginning of November. From his being up at night way too many times, to his screaming fits, to his slow motility, to my thoughts of him having reflux again, to his new episodes where he is not breathing. I have to say that this meeting actually went better than any other one that we have had. I think that his main doctor has changed his tune and realizes that I am not going to stop bugging or go away!
Grandma and grandpa C came with us to the appointment. Upon entering the office A went into one of his new spells. However by the time I found the nurse and she came in A was breathing once again.
We discussed many things. I told them that I wanted an upper GI done to check his fundo. We also discussed possibly placing his on cisipride for his motility, but of course it is banned in Canada so there is a process that we have to go through to get this medication. The first step being an ecg of his heart.
The suggestion came up as well to try him on a different formula and see if that was to help at all. Since the appointment I have done so but do not notice any change in his sleep or his motility.
I was also told to up his prevacid to 90mg/day from the 60mg/day that he is on. However I was very adamant that I am not doing this because I don’t believe that I need to have him on such a high dose.
I also told them that I had not yet heard from the sleep lab for another sleep study or from cardiology for an echo. I also asked if they could arrange another 24 EEG seeing that our last one was done in October 2006. These are being arranged.
December also brought my 30th birthday. I have to say that it has been the ONLY birthday that kinda brought me down a little bit. I had a wonderful surprise from my brother and his fiance. Since my birthday was on a Friday it worked out perfectly and they had taken J and I to Toronto to see Dirty Dancing! It was really good and I have always loved that movie. What girl doesn’t? I have to tell you though that the guy that played Swayze was FAR from good looking which was kind of a bummer when he is the MAIN interest of the movie! hahaha
Grandma and grandpa S came down on the Saturday (13th). We had a really great visit and we went out for dinner for our birthdays. Daddy was unsure about going out for dinner because A usually does not like to sit still but he was SO well behaved!!! And as a bonus we got to keep the dinner that grandma had brought down for the next night! haha
Daddy also turned 31 in December. A and I had baked him a cake and we celebrated his turning another year older with just the three of us.
December 23rd grandma and grandpa C were here early in the morning to pick A and I up to head to Sick Kids for Ashton’s ECG and upper GI. We left here about 6:30am for the 9am appointment and ended up getting there about an hour early. Worked out well though as we were able to have a coffee and sit a bit. It is always nice to get there and not feel so rushed. A had some bloodwork done first and did really well. I can never get over how well the people that work in the clinic there do with the kids.
9am we were upstairs for his ECG. He was a little worked up at first but I think that is normal seeing that normally he is being poked and prodded and probably is worrying about that. After the ECG we headed to radiology to have his upper GI. Upon entering the room A started to get very upset. This is the same room that he had ph probes placed and I know that he remembers that. As soon as I laid him on the table he was so upset crying and going off colour. The doctor placed 60mls of fluid into his g tube and we waited. We could see his tummy full and I was just waiting for the reflux to show. We would go from his back to his side for about five minutes and nothing. The doctor then said that he was going to put in another 60mls. I was a bit hesitant as I only feed A 50mls every twenty minutes during the day for his feeds but he said he wanted to push him a little. So he did so. STILL NO REFLUX!!!! We waited about ten minutes and NOTHING. A was still very upset but mommy was SO happy! I was just about jumping up and down and the doctor said “these tests are only a moment in time and you have to remember that.” Yes, I know but trust me, I know my kid. He was so worked up, gagging, crying and laying down and NO reflux. If he was going to reflux it would have been THEN. See, it pays off to do research and demand a certain surgeon do the fundoplication, because he obviously did it PERFECT!!!!
A however was not emptying AT ALL while we were in the test so the doctor asked up to come back in an hour to have a picture down to see how things were moving. I’ll tell you, I was a bit nervous with it being the 23rd thinking that possibly he would be admitted for obstruction!
We all went to eat lunch and walk around while waiting for the hour to pass. Upon having the x-ray done all was good and we could head home.
Christmas Eve A was in bed at 11pm and daddy and I shortly followed. Daddy is still a big kid at Christmas time and was up about five times throughout the night until 7am when he finally got out of bed! haha I was up soon after and A was up at 8am.
It was pretty cool this Christmas because A was SO into the presents and had lots of fun. Last year I taped the entire morning here and he kinda just sat there. Well this year all he did was talk and talk and talk!!!! He would get so excited for a present no matter who was opening it. Really neat to see. Maybe next year he will understand the whole Santa thing? I can’t wait! He does know what “Christmas Tree” is and even if I say it now he smiles like crazy. Such an amazing little man! Cujo and his new bone Santa brought for him…
We headed over to grandma and grandpa C’s at about 11am. Uncle S, Aunty A and Aunt Shorty were also there. We all got spoiled and had a great time. Aunty A made me this amazing gift this year and I wish I had a picture of it to show you but I don’t. It is the word “Miracle” cut out in wood letters and she put pictures and decorated them. It of course made me cry and I can’t wait to get it up!!!
Boxing day we headed down to Chatham to visit with grandma and grandpa S and Aunt K. Great grandma and grandpa came over to visit as well when we got there. A decided to nap later in the day so poor daddy had to wait to do gifts! haha
Once again we were all spoiled!!! A got the new Elmo which is pretty neat because when I would take him in stores that had it I would always play it. In the store it only says one line so now he KNOWS when that line is coming and starts smiling like crazy.
A in his cool new pajamas from grandma and grandpa S…
Saturday night grandma took over for A so daddy and I could go out to the bar and have a night out. It was lots of fun and A had a pretty good night for grandma which is always great!
We came home Monday evening and I took down our Christmas tree within the hour of being home. I know that old wives tales say it is bad luck to take the tree down before the New Year, however last year I left it up and we didn’t have the greatest of years so I thought I would try this! haha
New Years Eve we didn’t do anything. A was in bed at 11pm and daddy and I watched the New Years special. The minute after the ball dropped I was in bed! I have been SO tired lately and just have no energy at times to do anything.
Here is to 2009 and hopefully a GREAT year!!!!!
First, a very happy 19th birthday to Aunt Shorty!!!
So I seem to be really slacking on updating this blog, but this summer is just crazy busy so forgive me!
So I had my bachelorette on the 18th and it was fun and all of us had a great time. The only crappy part was, the Friday night that I got there I started with a sore throat! By Saturday night I had a pretty bad cold and my throat hurt just to breathe. I didn’t get ANY sleep and needless to say the drive home on Sunday was long and I just wanted to cry I felt so sick. When I got home I ended up in bed and tried to sleep. A had a good weekend with daddy and grandma and was a good boy.
Monday the 21st I had my four wisdom teeth pulled under a general anesthetic….figured I might as well feel like crap for everything all at once! If I didn’t get them out that day then I was looking at waiting until September and there was NO WAY that I could wait that long. They have been so painful and keeping me up at night. Recovery went very well and I only ended up taking pain meds on the Wednesday. Much easier than I thought that it was going to be!
Tuesday evening (the 22nd) I noticed that A seemed to sound congested. While we were out I picked up some benadryl to give him to hopefully help him sleep. By Wednesday he was VERY sick. He is now on a monitor at night again as I need to know what he is doing. Overall he has been doing pretty good but there are definitely moments where he drops very low and does need some suctioning and stimulation. I just hope that I am able to keep caring for him here and not have him end up in hospital. This is now day 8 for him and he doesn’t seem to be getting any better. I however still have a bit of congestion and cough so I am not too worried at this point.
So since my last update not too much has been going on as we have been kinda trying to recover and get better. It totally sucks being sick! I tried SO hard to do everything right but of course he still ended up getting it from me.
On another note, today was the day that A got his wheelchair. We are trialing it for a month and see how it goes. If I am happy with this one then they will order the same and if not then we will trial another one. I was excited to get there and see this wheelchair and have something for him to finally sit properly in and get rid of this darn stroller that I can’t stand! At the same time it is hard because although we have always known that he would end up in a chair it is reality. I have to tell you though, he sits AMAZING in this chair!!!! We will definitely have to use it a ton more to see how it works and we base our decision on the chair very well.
When we got out to the car and loaded up the wheelchair and his stroller I was okay. It was when I looked in my mirror and saw the wheelchair in the back that I started to cry. There definitely is a process that I will have to go through to deal with this. J and I have both been talking about this wheelchair for a bit and I know that we both hoped that maybe, just maybe he wouldn’t need one. High hopes, but as parents it is one of the hardest things to accept. That your child will never walk.
Anyways, A and I went to the mall afterwards so I could try it out and get a few things done at the same time. So far, no complaints! The only complaint I do have is how many people STARE! It drives me up the friggin wall. Now most of the people that stare are children and really they don’t any better, but it is their parents job to teach them about how kids can be different. When kids aren’t told about things like this then they just don’t know what to think. Well anyways, that is a whole other post.
Daddy came home from work pretty early today and when I heard him come in I went into the kitchen. He looked at the chair and said “wow, his other one didn’t look anything like that.” I said “what, like a wheelchair?” Then his tears came. We hugged and cried together.
First, a happy fathers day to all the daddies in the world!!!
Saturday A and I headed over to Olivia and Avery’s for their 3rd birthday party. They had two pools set up and A absolutely LOVED it!!! I cannot wait until he can have his own pool at our new house!
We had so much fun that bedtime came very quickly for A that night!!!! Thanks guys for having us!
Well I can’t believe it already, but my little man is three today!!! We had a birthday party on Sunday for him and thanks to all the kids he slept great that night!!
A hanging out with Leeann and her mom, Anne. I met Leeann at Toronto Sick Kids during our recent stay and we instantly connected. Her daughter was Ally who passed away in March. I was so happy that they came to A’s birthday, it meant a lot!
Well I need to get to bed. I just had to post his birthday post before going to bed because we are off to Sick Kids at 6:30am for an eye appointment. Nice start to your third birthday eh?!
Well we have entered June. A crazy month in this household for sure! SO much happening and SO much to look forward to! In 8 short days my little boy will be turning three years old! I can hardly believe it!
I have my FIRST dress fitting next week along with a trip to Toronto Sick Kids for A’s eyes and a trip to Waterloo to finally see Dr.Wiggins who we have been waiting almost a year to see!
We went to grandma and grandpa’s yesterday for a barbecue to celebrate grandpas birthday which is actually today. A was a show off and rolled over for everyone there to see it!
So my first birthday wish is to grandpa C, my dad, my friend, my hero.
He is an absolutely incredible man and one that I wouldn’t trade for the world. He has been there for me through SO much and I am so lucky to be able to call him My Dad. I can’t stop thinking about my wedding and having him walk me down the aisle. It is something I have dreamt of since I was a little girl and it is going to be so great to finally have this one dream come true! I can pretty much guarantee that it is going to be ONE of the hardest things in my life to get through without tears. Well actually I am pretty sure I won’t get through it without tears. LOL
So happy birthday Grandpa! We all love you!
And some pictures from yesterday…
Mady and her friend Sadie…
My sister and her new man…
My dad trying to read his birthday cards…
My brother and soon to be sister in law….congrats guys!
And the next birthday wish is for grandpa S who celebrates his day tomorrow! He is also an incredible man, who very shortly is going to be my father-in-law! And honestly, I don’t think I could have a better father-in-law than the one he IS! And I have to say that I am looking very forward to his speech that he has written for his favorite daughter in law! LOL We all love you!
Well first I am happy to report that all three of us are back to ourselves and over that nasty flu bug! I was awoken at 3am on Thursday morning with severe stomach pain and then was blessed with the vomiting and diarrhea. I was happy that the nurse was here that night because I was not able to watch A and worry about what was going on with me. Thursday was an absolute killer day for me. My mom wasn’t going to come over because she wasn’t feeling well but she was SO nice to come to let me lay down. If she didn’t come I didn’t know how I was going to deal with A when I felt the way that I did. The body pain was just insane and it was hard to even think let alone move.
We never did end up going to C-town as we had planned either as both grandma and grandpa C came down with the same nasty bug. They were supposed to take A for the weekend so that was a no go. I didn’t want to take him either because we had a surprise 30th birthday planned for J. I am kind of glad that we didn’t go because of the storm that we got because most likely we would not have been back tonight. Things happen for a reason and I think that we just weren’t meant to go.
So this morning A and I made daddy his birthday cupcakes…
We then went in to wake him up…
After getting up A gave daddy his birthday present…it was the Toronto Maple Leaf corvette…
For dinner I made his favorite which is his moms recipe for shepherds pie. It was sooo yummy! Then I gave him the gift from grandma, grandpa C and I…
We had a great day but a bit disappointing that we couldn’t share it with anyone else! Wow, 30 years old…I can hardly believe it!
So on my birthday my sister gave me an envelope with a letter she had written to me. It means a lot to me and I wanted to share it.
To My Big Sister,
My entire life I have felt a distance between you and I. I was never sure why that was exactly, perhaps the age difference. (She is 11 years younger.) Well, that is what I always figured anyways. But over these last few months I have figured out a lot about myself and what is important to me, and one of those important things is you.
I know I was a brat. I was disrespectful to you, Shaun as well as mom and dad. I have no idea why it took me so long to realize. S, ever since I can remember I have looked up to you and thought so highly of you. Somewhere along the road I forgot how important my big sister was to me.
I want you to know that you truly are one of the strongest people I know. How you do everything you do I will never comprehend. You have so many amazing qualities, and I really hope you know how beautiful, smart and talented you are. The one things that I respect about you the most is that no matter what life has thrown your way, you have made it through. But it isn’t just the fact that you’ve been able to handle it, its the fact that each time an obstacle comes your way you overcome it and in turn become a much stronger and happier person.
You have taught me more that you’ll ever know and I can never thank you enough for that. I just want you to know that after everything that you have been through and we’ve been through I love you, but more importantly I respect you.
I only hope that I will become half of what you are and if I do I will consider myself unbelievably lucky.
You can do anything that you want to do in this life. And I don’t want you to ever doubt yourself because you and I both know how remarkable and determined you are.
So sis, on this day I wish you a very happy birthday. I love you and I am here for you until the end.
Always and forever,
First here are some pictures I found on my camera from when grandma and grandpa babysat on the weekend….
Hahahaha I had a good laugh when I saw this one…wonder who put his leg like that?
Well today was my birthday and what a day! Last night around 8pm A started to act very strange. It was so weird that even daddy noticed and we were both pretty concerned. He would go very pale and then you could tell that he was refluxing. Next he would go very off colour and then the vomiting started. The first two times were just clear and the third was a huge amount of bile.
By 10pm I was starting to get pretty worked up about how he was acting. I have a very strong instinct when it comes to A and I knew that something was going on. I still don’t know what last night was all about, but I hope I don’t see it again!
Anyways I decided to kick daddy out to sleep on the couch last night. I had laid A in his bed and right away he threw up. With him being sick and acting odd I really wanted to keep a close eye so he slept in bed with me last night. From 11pm until this morning at 8am he had vomited a total of probably 15-20 times. Every single time it was a ton of formula as well which had me pretty concerned. I have to say that he still slept pretty well though considering. He would start fussing and then I could hear his belly gurgling and then he would vomit and go back to sleep.
This morning I had a ton of laundry to do to say the least and things just went downhill. At 9am he normally gets a break until 1pm but because I had run his feed at half strength and 18mls/hour less I decided to run pedialyte. He has only vomited twice today and that was when I had tried half strength formula again. So it is now 11pm and he is still just on pedialyte.
The diarrhea started as well today but thankfully his last huge episode of that was at 5pm. At the current moment he is sleeping on the couch and his nurse is here. I am heading off to bed to get a good night sleep!
We still headed over to my parents for dinner and cake tonight and I got some great gifts!
We got the special tomato brought over today to trial to see if it is something we would like to get for him….of course with not feeling well it is hard to tell if he likes it…
A beautiful smile from my sick little man…
October 7th was grandma C’s birthday!
For Thanksgiving weekend we headed down to C-town. A, Cujo and I left Saturday around noon and from the start it was not a good trip. After packing the car and getting frustrated from everything that had to fit I dropped A’s box of formula and all of the cans went rolling all over. I stopped at the gas station to get gas and a lady who couldn’t wait two seconds for me to back into the pumps almost took off the front of the car. After getting gas I was backing up once again and someone decided it would be a good idea to walk right behind the car. Of course I didn’t see her because of the dog crate in the back and I almost ran her over. I go to leave the parking lot after opening up my ice tea and spilt it all over me! Ugh I was ready to turn around before being five minutes away from home!
The rest of the drive was not fun either. My stomach was bothering me and A was not happy. With all of his fussing he was gagging a lot and twice I had to pull over on the side of the highway to make sure he was okay. All in all I got there but I will never attempt that trip alone again with so much stuff!
Walking with daddy out in the grass…
Saturday night was an absolute nightmare! Normally when we are in C-town he sleeps very well but decided that Saturday was going to be different. He was up at 1:30am and was just NOT happy. Finally at 3:30am I got him out of the playpen and laid in bed with him. Took his temperature and he had a fever so I gave him some advil hoping to get him settled. Still not happy. He almost seemed to be playing strange in the room and after an hour or so of trying to get him to sleep I took him downstairs. Same thing, fussing and pouting. I put him in his chair and then took him outside. He was fine. The same A that I know. Smiling and getting all excited.
I thought I would take him back in and try to lay down again with him. Nope he didn’t want any part of it. At 7:30am I put him in his chair downstairs in front of the TV and laid on the couch. I was probably out within minutes. 10am I was up and lasted until I had to have a nap for a couple of hours in the afternoon.
Such a sweetie!
Aunt K came for dinner on Sunday night because she had to work on Monday and wouldn’t be able to be there for turkey dinner.
Sleeping on great grandma and grandpas bed…
We were at the great grandparents for Thanksgiving dinner and A slept for the first couple of hours. He had a bit of a better night on Sunday and grandma gave me the night off!
Grandma giving him some water…
J’s cousin just had twin boys on September 7th. They were SO tiny and I could hardly wait to get my hands on one of them when she came in the door! It’s funny as time goes by how you don’t remember your own kids being so small. I mean these boys were 6.5lbs and 7lbs and they STILL seemed so small to me. A really didn’t know what to think when he first saw me holding one of them. Once he seemed to warm up to the idea he was just smiling away. It was so cute and was one of those times that I would love to be able to know what he was thinking.
A was this size at 6 months old!
Hmmm I really think A would like to be a big brother! haha
A big happy birthday wish to Aunt K! We all love you, miss you and wish that you lived MUCH closer! Maybe one day A will be able to talk you into it! hahaha
So my little man is sick. The last two nights have been ROUGH to say the least. He has a pretty bad cold and today started with the fever. His cough is not sounding very nice either and he is just plain grumpy. I feel so helpless because there is nothing I can do to help make him better. It doesn’t help that he cannot have any meds to help with the stuffed nose, coughing and sneezing because he cannot have decongestants.
Yesterday we were at McMaster for his GI appointment. I had still never heard from the respirologist last week and yesterday I was hoping for a plan. Well actually that WAS the whole idea of seeing respirology and then GI. But as is no surprise the two had not even discussed A yet. Ugh.
So I had asked about possibly getting a g tube placed to try it out with A. Sure was the answer with the added “you are taking a risk….” Why is it that I always feel like I get stuck in a decision because no one wants to back me with it?! “Why do you want a g tube?” That was the next question. Well for starters, the gj tube was supposed to be temporary and it has been 20 months. Secondly the kid never feels hunger because he is fed 16 hours a day. He wouldn’t even know what hunger was if we were to stop feeding him. With a g tube I hope to get down to feeds every four hours or so and then work on oral feeds. It is kind of hard to get a kid to eat orally when he isn’t hungry. Maybe hunger is going to be the key to helping him do oral feeds. We all know that he was a good feeder before the tube so why not again?
Now I know that the gj tube was done because he was admitted into the PICU with life threatening events most likely due to reflux, BUT he has still has those spells with the gj. To me I feel that if we go to the g tube and he starts with the spells, then at least I can say that I tried and I will know that it isn’t possible. However without trying we will never know.
So now the plan is that the respirologist will call me in the next couple of weeks and we will see where to go from there. His GI told me to ask for the next available appointment to come back. LOL Well that wasn’t until March! I am not waiting until March to discuss things further.
On our way out we stopped at the NICU and got to see A’s primary nurse Danielle.
Last night was the first Leaf game so daddy and A cuddled and watched the game. Well some of it…
On a final note for today, I did hear from the doctor in London the other day about A’s MRI. A has mild PVL with a lot of white matter around the ventricles in his brain. English you ask? I’ll dedicate my next post to that!
Well this past weekend was very busy and pretty crazy! We left on Friday night to head to Windsor so we could be there to celebrate Cale’s 2nd birthday party. He was also born at McMaster weighing 1lb4oz and we have become very close to his parents. We didn’t end up getting there until almost 1am which was just insane! A didn’t really sleep on the way down and when I had laid him down in the playpen he was just raring to go smiling away.
Saturday was the big day for Cale! He was spoiled and got TONS of cool new stuff. Aunt K also came over to celebrate the day and spend time with her nephew of course. I think Tina and Kelly had more fun with his new toys than he will! LOL
A hanging out for the party…
Cale and grandpa…
Cale and his daddy…
A and daddy…
Cale eating his stars…couldn’t get him to look at the camera for the life of me!
Aunt K and A…
Cale opening gifts with mommy and daddy…
Birthday cake time! (This kid was COVERED in icing!)
A and daddy…
A and Lady…
Cale watching TV haha I love how he stands right at the TV and watches it!
Cale and A hanging out Sunday morning waiting to head to breakfast…
Cale and A watching the TV intently…
We had a great time and I am so proud of you Cale! You are an amazing little guy and we love you very much!
NOW for Sunday. So we head out of Windsor on Sunday afternoon to head to grandma and grandpas for a night. J was taking me out for dinner at the lighthouse near C-town to celebrate our six year anniversary that we had on Friday. Grandma was taking care of A for the night and it was so nice to go and have a nice dinner and the night off!
The weather wasn’t the greatest but at least it wasn’t pouring. It would have been wonderful however if it was nice out because the restaurant is right on the water and you could tell how beautiful it would be on a nice night. We had a great dinner and then came the bag of gifts J had. I opened my card and then reached into the bag. I pulled out two CDs that were wrapped in tissue paper. Then came a tshirt wrapped in tissue paper as well. Lastly I unwrapped a timbit box. I started to laugh and asked what that was about. He said it was to reminise. For those of you who don’t know we actually met at Tim Hortons. Anyways at this point he was moving my purse that was on the floor between us and was VERY nervous. I could see him shaking and knew something was up. He got down on one knee once I opened up the timbit box and pulled out the small box inside. I opened it up and there was the ring that I have ALWAYS dreamed of! He was crying, gave a little speech (well for what he could) and then asked me to marry him! I have been waiting SO long for this day that I don’t think it felt real. LOL
Here is the picture that the waitress took for us before we left…
After all of that excitement we headed back to the house and the excitement didn’t end! Grandma was holding A and I noticed that his tube looked longer than usual. We laid him down and sure enough his tube was broken. It was out further than it should have been and the string inside the tube was coming out of his stoma site. I could hardly believe that after such a great night I had to deal with that! At this time it was about 10pm. I called the London hospital but of course didn’t get anywhere with anyone that I talked to. They all kept telling me that they couldn’t assess him over the phone blah blah blah. Well no shit, I’m not asking for that, I just wanted to know if I brought him in then would they fix it. She couldn’t tell me that. So finally I just said that I guess I would figure out what to do, when to bring him and so on and she said “okay, sorry I couldn’t help”. LOL
A was very tired so we put him to bed and I decided that we would get up early to head to London. Grandma took him for the night so I got a pretty good sleep. Besides the times that I woke up and was looking at my ring! haha
6:30am I was up and getting ready. We didn’t get to London until about 9am and A was pretty lethargic and fussy by this point. Long story short I have to say that I was VERY impressed with the London Childrens Hospital from start to finish. They were all very caring and sure to let us know that things were being done. We were out of there by 2pm and headed back to C-town. (I also found out that this hospital does GJ buttons but it is a pretty long process starting with a referral for A to get one. Great to know though because this long hanging tube is starting to be a real pain with him constantly moving around!)
We hung out for dinner and J’s grandparents had come over to have a drink to celebrate our engagement. I am SO excited!!!! So all of you (and you know who you guys are) better be ready for a big party!
A HUGE happy birthday to Alina and Sophia today! They are now 2 years old and both have made amazing progress since being born at 26 weeks gestation weighing 810 grams and 790 grams respectively.
I can’t wait to see you guys again and big hugs and kisses from A and I!
So Thursday was our BIG day in London with the movement disorder doctors and the neurologist. I had been worried sick about this appointment but at the same time I was eager to find out what his MRI showed from McMaster and then the new one that he had this past May at Toronto Sick Kids.
I had left here at 2pm for the 4pm appointment. Of course there had to be a huge accident so I didn’t get there until 4:20pm. I get into the room and all of the docs come in. They said “well we have some bad news…” and I said “let me guess, you don’t have the MRIs?” Yep. No MRIs to look at. Toronto didn’t do the MRI they were supposed to and McMaster wouldn’t send his one over. Didn’t do it?! A can NEVER have another MRI now because of the magnet in his skull. They better have something! I was so FLIPPIN mad!!!!! I drive all the way there alone with A to find out NOTHING! I don’t understand how all of this bullshit happens with A. Why do we have SO many issues with hospitals and doctors!?! I just don’t understand. So out of the 20 minute appointment that we DID have I was told that A has dystonic cerebral palsy. hahaha are you kidding me?! Thanks for the information that I already knew!
So the last appointment we had with the docs in London they told me that they could guarantee that As would have PVL or something happening with the basil ganglia. I had asked “what if nothing shows up…then what?” And I was told then that A would be a mystery. WELL this time they told me that they would try and get the one that A had done for his implant and if I didn’t hear from them in three months to call them. Three months?! They then went on to say that even if the MRI was fine it didn’t change that he had CP. What about the mystery? Well it doesn’t matter they said. The damage could be in the nerves and cells. Hmmmm sounds strange to me. I am not giving up on my fight and one day I WILL succeed!
After leaving London VERY upset I drove to C-town. Grandma and grandpa were taking A for the weekend so that I could go on my much needed girls weekend near Grand Bend. Tina came to pick me up and we headed out about 8pm.
I had an AWESOME time. It was so great to know that A was being taken care of and that I had NOTHING to worry about for once. It was so strange just doing nothing and hanging out. Sleeping was strange too! It was SO quiet and dark and that is NOT something that I am used to here at home. We all went and spent the day at the beach on Saturday and had great weather. There was eight of us girls and I can’t wait to do it again next year! I wish I had taken more pictures but here is what I have….
Sunday A and I left C-town at 2:30pm and I was home at 4:30pm. I could hardly believe that it only took two hours but we usually stop so it was very quick just doing it straight!
A didn’t sleep the whole ride home and wasn’t very happy either. I had to stop twice because he was vomiting so much that he was choking. NOT a fun ride to do alone that is for sure!
Finally after getting him in the door and changed he went to sleep. That was at about 5pm. He slept until 8:30pm!
After his bath and brushing his teeth he pretty much wanted to go back to bed. Daddy spent a bit of time out on the balcony with him watching the stars and that was it…he was just exhausted. And this morning at 8am….
Okay FIRST I have to wish a huge happy birthday to Cole!!! His birthday was on Monday and he turned 2 years old! He was also at McMaster and was born at 24 weeks weighing 680 grams. He is such an amazing little guy and he has come SO far!Big hugs to you Cole and we will see you soon hopefully!!!
Next I have to wish a happy birthday to my brother, or Uncle S as he is known! He turned 27 yesterday and has been one of my best friends ever. Also a big congratulations to him and Andrea for buying their first house which they will be moving into at the end of this month!
So this past weekend we headed down to C-town to grandma and grandpas for a visit. We didn’t leave until Sunday afternoon but we had a great time. It was a busy house with J’s aunts, uncles and cousins.
A’s cousin Wes being the playful awesome kid he is!
A LOVES lights. Wes had a light stick he was using to entertain A…
Grandma and A hanging out in the crappy weather…oh well at least it was hot on Monday for us!!!
A is one of his favorite places ever…the pool!!!
Awwww what a great family picture!!!
I love this picture of the two of them….
Does he EVER stop smiling?!??!
Grandma and A getting some sun…
Nap time for my little man!
What a cool dude!
Swimming again with grandma…
There were a lot more pictures of A and grandma swimming but he wasn’t wearing a diaper so I can’t post those pics!!!
We ended up getting home late from C-town and didn’t get a very good sleep before having to head to Toronto Sick Kids yesterday. I ended up leaving at 7:45am for the 10am appointment and got there at 9:15am! It is so crazy how sometimes it can take three hours, two hours and then this! I am very happy that it was an uneventful drive as it was the first time that I have had to travel there alone with him.
The appointment went well and A was doing very good at reacting to the sounds that Ruth was playing. Everytime that he would look away from what I was doing to entertain him after a sound she would set off a puppet. The puppet is in a box in the corner of the room and it has lights and sounds. They use it kind of as a reward for turning to the sound. Well my little smarty pants LOVED this puppet and was turning and smiling at it without it even going off! hahaha he just wanted to see it go off and was waiting for it.
Once she was done with doing all of the changes and settings she swept through the probes and made sure that he was okay with it all. He was fine but definitely wondering what was going on.
We got home about 1pm after picking up my glasses and he was exhausted. I found that he was having a hard time going to sleep so I turned off the implant and he zonked right out. After his nap I turned his implant on and boy was he upset. Pouting, real tears and all…
I have to tell you that it is heartbreaking to have him cry like that with tears. It is something that I have not had to deal with for two years and WOW it is crazy! I couldn’t help but giggle to myself as well because it is just so dramatic! He noticed and then he was trying not to laugh. It was too cute.
Daddy got home from work early so we headed over to grandma and grandpas to celebrate Uncle S’s birthday with him and Andrea.
A was having fun with daddy here. If you stomp your feet and walk towards him this is his reaction!
Uncle S getting his one gift from Andrea…a punching bag!
Birthday cake time…
We ended up getting home about 10:30pm and I could barely keep my eyes open I was so tired (and very grumpy!). Thank God that A went right to bed….
Well I haven’t posted in a couple of days as things around here have been busy and A still has his low grade fever. Sunday grandma and grandpa came home from up North so we were all over there waiting for them to get home. It was also nice to be in the air conditioning!
Monday was a crazy day for me. I was having one of my very emotional days where I feel like my world is falling apart. Or has. I really don’t like the feeling but I think sometimes I just get so tired of fighting with docs and so on that I break. It is very hard to raise a child with all of A’s needs and I get overwhelmed sometimes. I am sure that you moms out there that have a special child know exactly what I talking about.
I was happy that Dawn was here that day to work with A because I just couldn’t deal with a fussy child that day. I don’t know what it is lately with him or what is going on, but I do know that he really isn’t himself. I think with so much changing for him it is hard for him. With having his implant on he has to deal with all of this noise that he has never had before. He is cutting seven teeth at the same time including molars. Just too many things going on at once. And this fever just won’t go away!
On Monday I tried giving A a bottle with water. He took 30mls within about five minutes and then he started to choke. I have to be very careful doing a bottle as he forgets to breathe/suck/swallow at the same time. So I have to pace him at about every two sucks. Anyhow he did great until he started to choke and then it all came out of his nose! Ugh it was gross and he was NOT happy.
However yesteray I tried a bottle and he took 50mls and kept it all down! I am so impressed with this kid at times that I just want to jump up and down! It is going to be something that I will work on when I feel he can handle it or shows me a sign that he wants to do it. With his reflux and blue spells it is something that I have to be very careful with.
Tuesday grandma was here and we took A to the doctor. He didn’t really say much except to keep an eye on it and if he still has the temperature next week to bring him back for sure. It ranges from 100-101 and no different. I wasn’t really that concerned with it as he doesn’t seem very ill but I wanted to get him checked out. And he said not to assume that a fever is from teething. I don’t think it is that because he has been working on these teeth for so long and never had the fever before.
I know that I myself haven’t been feeling the greatest the past couple of days so maybe it is just some bug that won’t go away! Today is actually the worst day for me so far as I just feel sick to my stomach and like I have a sore throat coming on. Not fun stuff that is for sure!
Monday was Aunt Shorty’s 18th birthday(my sister)! She was doing her own thing with her boyfriend so we got together last night to celebrate and give her gifts. A and I went for dinner with Aunt Shorty, grandma and grandpa. I can hardly believe that she is 18 years old already!
Today Shelly was here to play with A. Deb was also here to do his hearing therapy for a while. She is very happy with how he is progressing and even following sounds around the table when we were doing therapy. He had a new reaction yesterday to the vaccuum! He did NOT like it. Haha it was way too cute. Here are some cute pics from today with her drawing with A.
So I also went today to have my eyes checked. I have been asked so much why I am squinting so I thought I might as well go. Well turns out that I do need glasses but not that I have to wear all of the time. I couldn’t believe how much more clear the letters were that I was reading when she showed me the prescription that I would be getting! WOW I was amazed that for so long I have been thinking things are clear and they really aren’t! I picked out some really funky glasses after about an hour of trying tons on. LOL I’ll be sure to post a picture when I get them.
Well the past couple of days have been pretty busy around here. Saturday of course was the picnic and then on Sunday A and I headed out for a birthday party. We went with grandma and grandpa out to my Aunt and Uncles house to celebrate my cousins 18th birthday! I can hardly believe that she is 18 years old! She absolutely adores A and is wonderful with him.
I took A swimming in their pool and it was SO nice! 90 degrees! Of course A had a great time, he loves the water and could stay in all day if you let him.
I was also putting him up on the side of the pool and then taking just his hands before pulling him in. He LOVED that and could have done that many more times than what he already did!
After getting out of the pool because he looked pretty purple he went and spent some more time with Nicole. She also has a working dog named Mr.G so she had him come out to meet A. I don’t think A really realized it was a different dog than the one that he has at home.
Hope you had a great birthday and I will be thinking of you tomorrow at your prom! You are going to look stunning in that dress!
Yesterday was our appointment with GI at Mac. We didn’t really get any further than where we have been. I went into the appointment willing to give in to trying the cisipride for his reflux. However, after seeing the saturation trend that A had done she said she was not comfortable putting him on this med. Ugh.
The fundo was brought up again however with that I have not changed my mind at all. I am just not comfortable with the idea and would feel awful if I gave in to doing one and the results were not good. I am also frustrated with the fundo because that should be the absolute last resort. Well there are still plenty of things that we have not tried with A. For the most part, we have never seen a pulminologist which blows my mind because he came home with a monitor and on oxygen. So she is giving me a referral to see a lady who deals with lungs/reflux and we will go from there. I know that I was told that his lungs are patchy, but I want that looked into before consenting to the surgery. IF his lungs were getting patchy from aspirations then obviously I will have to look outside the box at what is best for him in the long term. And like his GI said, if his lungs are okay then we can kind of settle down a bit about the whole reflux issue.
Today I also got a call from Toronto Sick Kids to see the pediatrician there. So I am excited for that appointment in hopes that maybe we will finally get somewhere with answers and help. It will also make things easier to get referrals to doctors there that I need/want to see. I will keep you all updated on how that goes.
Well I haven’t done a post in a couple of days as I have been way too tired to do much of anything. I still have not even gotten close to catching up on the sleep that I didn’t get while A was in the hospital. So first here are the birthday pictures for Olivia and Avery. We had a great time and it is always fun to watch A when other kids are around!
Elizabeth, Avery, A and Olivia
Thanks Shannon for having us we had a great time!!! And WOW, the food was just AMAZING!!! I definitely need to get a few recipes from you!
So yesterday was Father’s Day. A giving daddy his card…
Hanging out at grandma and grandpas with his balloon…
The last couple of days A has been right back to himself. Smiley…happy, the same kid he was before surgery. Nights, well that is a different story! I don’t know what is going on but he has been awful at night and it is something that I am really not used to. He is starting to act really clingy and scared lately. I guess it is kind of a good thing because he never showed really any emotions before, but it is strange at the same time.
I just finished doing a sat trend today that I started on Friday. I will hopefully get the results of that soon from the doctor that did it for me. I do have to say though that it is very hard to see how much he desats considering the fact that he is two years old, and this is something that they told me would end by 34 weeks gestation! Well they were wrong because we are WAY WAY past that!
So I thought I would catch up on a few pics and stuff for today. I will start with the good pictures 🙂
First things first I guess! A very happy birthday to Olivia and Avery who turned 2 years old today!! They were born at Mac as well. Yay, birthday party tomorrow!
I want to thank everyone that came to A’s birthday party again. It meant so much to have all of you there to celebrate the day with us! Here are some more pics from that day.
I have to start with Alina. Her mom sent me this picture since she was not able to come and she is SO sweet!
Thanks Vickie for those pictures!!
I got a great call today from one of my workers that I have for social services. She handles all of the money that I am allowed for each year to provide respite care for A. Well she had some extra money around and it can be used for camp for children with special needs. However A is not quite old enough for camp so she thought that maybe he would enjoy music therapy and it would pay for that! I am looking forward to the information that she will be sending to me about this therapy. I think it will be wonderful for A to do and I am sure that he will enjoy it.
Now for some not so nice pictures. On Wednesday morning when I got back to A after having a little sleep down in the constant care room I noticed a bruise on the front of his leg. I didn’t really think much of it until later on when I turned him over to sleep (he likes to sleep on his belly). Then I noticed three more bruises around the back. After a couple of minutes of searching him up and down I realized that the marks looked like a hand. I called the nurse that was on over and showed her and she didn’t really say much.
Wednesday night when we got home I showed J and asked him what it looked like to him. He said the same thing. A hand.
This is very upsetting to me because these nurses at Sick Kids are supposed to be part of an amazing hospital with many professionals. I don’t know what happened exactly but I can assume that someone was frustrated with him and grabbed him around his leg. That Tuesday night when I went down to sleep he was VERY irritable and not comfortable at all. I was VERY irritable with the nurses because they would not give him any more pain meds and it was very obvious that he needed them. I eventually just told his nurse that I needed to go and get some sleep so that I could come back a bit more sane. Hmmm maybe I should have just stayed.
On any note, the pictures are not the greatest and were not taken until Thursday here at home so the bruises were fading. Pretty sad isn’t it?
Well everyone I am pretty much an emotional basket case right now. My stomach is turning and I feel pretty sick. A’s second birthday is tomorrow so that starts off my emotional side just thinking of it. I am excited that we will be celebrating this birthday with MANY people that mean a lot to me. I am excited that there are going to be many “miracles” celebrating with us. But at the same time his birthday brings back so many memories of what he went through and what he still continues to go through.
Then comes Monday. Surgery day. WOW, I am sitting here in tears just writing this. I am going to be a complete mess for sure on the day. It seems that we have been waiting for so long for this day to come and now it is coming so quick. It is very hard for me because I just think about how one day soon he will be able to hear me. This is HUGE! I get chills just thinking of the day that we will get to say his first “heard” words to him. I will be taking my video camera for sure that day so not to worry, I will share that special moment with all of you.
What an awesome birthday present for A! This coming year is going to be very exciting for A and all of us who love him. I look at him now and how far he has come and can only imagine what my little bubbers is going to accomplish.
My mind just won’t stop going. I really don’t even know how to describe the feeling I have. (You moms that have children with implants know exactly what I am talking about.) I really need to try and relax. Our good friends are coming down today from Windsor with their little guy that was in Mac with A. I know they will help me cope through the day and take my mind off of my worries.
So yesterday Dawn was here (A’s PSW) and she brought him his first birthday present! He got a colouring book, a pad to colour on and some washable crayons. I said of course that is to make mommy cry 🙂 Amazing how little things in life can mean so much coming from a child that many people didn’t have much hope for at one point.
Well off I go for now….I will have TONS of pictures tomorrow night for you all to see!
This weekend is a special one because Grandpa C celebrated his birthday yesterday and Grandpa S is today! Happy Birthday Grandpas!!
Daddy worked yesterday so A and I went out for a bit in the morning to try and find air conditioned places! LOL It was so hot yesterday it was disgusting. Very hot weather makes a grumpy mommy and a grumpy little man. I think he is like me and doesn’t really like the heat like that.
Later on in the afternoon grandma came and picked us up to head over there to celebrate Grandpa Cs birthday. Uncle S, Andrea, my aunt Gayle, Uncle Bill and cousin Nicole were there as well. Daddy ended up making it in time which was not really expected so that was nice!
A smiling at Andrea…
A hanging out with Nicole…
I LOVE this picture of the two of them together!
Grandpa blowing out his 55 candles! 🙂
Wearing daddy’s shades…
Grandpas gift from grandma…
Opening A’s gift. This is always an emotional time for grandpa. He kept saying “uh oh” before he even got the box open.
It’s open but he still can’t look at what it is without the tears!
It was a great night! I thought for sure that A would sleep great because he only had about an hours nap yesterday before even going to g & g’s. But it was far from a great night. He has a fever so that is probably his problem but I sure wish I knew what it was from! I have been wondering for a couple of days if he is brewing something because he just sounds so much worse than usual. He is still acting fine which is good but I really hope that nothing is going on or else the cochlear implant surgery will have to be cancelled! So everyone keep your fingers crossed that he is better before then! (Only 8 days!!!!) And can you believe that there is only a week until his birthday?!?!
And for today, Happy Birthday to Grandpa S!!! We love you and miss you and can’t wait to see you!
First wanted to say a very special happy birthday to Danielle! (She was A’s primary nurse in the NICU and was absolutely amazing!) Hope you had a great day and big hugs sent your way!
So another adventure for A and I today. I dropped daddy off at work this morning so that I was able to go to Kitchener to pick up his NEW mould for his hearing aid. (Lisa, I would have called but I had to be back here for an appointment;which in the end was cancelled anyways! I promise I will be making my way there shortly!)
So any guesses to how the new mould is??? Well they didn’t make it right this time! There should be a “lock” to hold it into his ear and that piece was totally missing! Needless to say I was not impressed at all. It does fit better than any of the other ones that have been made but it sure isn’t how it should be!
After leaving there in a not so happy mood I stopped at Shoppers to get some formula. My five minute visit there turned into almost 45 minutes! I had some lady come up to me and start talking about A. She was very nice and used to be a nanny for a girl that weighed less than one pound at birth. I guess she has been on the Oprah show as well because she is sixteen now and doing great. It was a great conversation and I had even asked her if she was looking to be a part time nanny for another preemie! She however is already with another family and lives in New Dundee. She was very positive, and it is the first time that I have had a conversation with someone who has come up to me where I felt good when I walked away. She said what made her come over was his little glasses. And she must have said about ten times how adorable he was and that his head didn’t look like a preemies. Nice things to hear from someone. However, we all know how adorable A is and don’t need to be told that! So she had changed my mood by the end of the chat that we had. There really needs to be more people in this world like that.
So after getting home A crashed for a couple of hours and so did I! I then got supper going (made a ham) and then went and picked up daddy at work.
Anyways, off to bed! But of course I have one picture for today….