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?!