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!!!!!
Yesterday we took A to see a special needs hockey game. I was looking through the kidsability book the other day and saw that they are now in their second season for children with special needs. It is mixed boys and girls and the ages range right from 4 years old up. I have to say that I was very impressed and wasn’t really expecting to see what I did! Most of the players were actually very good and most were great skaters! There were of course some kids that were just skating around the outside of the rink with help, but it was awesome! I felt myself getting emotional a couple of times. Like when the ref took one young child from each team, placed them in front of the net and then let them take a shot. Of course the goalies obviously know to LET them score and they were SO excited! There was also a young guy that was too worried about making sure that his parents were watching him and they kept telling him to get in the game. I am pretty sure that he had cerebral palsy too. When we get closer to the age of four it is something that I am definitely looking into for A. There were no kids in wheelchairs, but hopefully it won’t be an issue. I’ll have to bring a box of kleenex when A is out there! LOL
Last night we went to grandma and grandpas for dinner. They had cut down a tree from the yard and it is The Charlie Brown Christmas Tree!
Now for today. UGH what a day! J and I were up early to get things done and A’s PSW was coming for noon. We left to head to the mall to get a couple of last items and on the way there the car made a HUGE noise and it stunk! Scared the crap out of both of us and we pulled over at the next street. We looked but didn’t see anything wrong. So we decided to go back to see if we had run something over. Nothing. I didn’t think we hit anything. So J turns down a side street and I’m telling him he should be going very slow because we didn’t know what it was. As soon as I said that there was a bang and the front tire had blown. So we call my brother at work and he comes out to change the tire. Well as soon as he gets the car jacked up he sees that the front right spring it shattered! That was the first bang we heard and then because it was shattered and we were driving it punctured the tire. So we had to call CAA and wait for a tow truck. A half hour later the truck comes and he tells us that he can’t tow it because he would wreck the oil pan. We then have to wait for a flat bed. Well he comes and tells us that he can possibly do more damage because there is no suspension on the right side of the car and he has to tie it down. We finally get to the garage at 2:30pm. Thirty minutes after we should have been done and home!
Grandma had come to our place however for 2pm so his Dawn could leave. My brother was able to get the parts in and was going to stay after work to fix it because we are supposed to head to C-town on boxing day. J and I get a loaner car and head to the mall to do what we had set out to do. That is when my brother calls and says that he can’t fix it today because it needs more parts! Now what? Who knows. We didn’t end up making it to C-town for J’s surprise 30th birthday and now the day before Christmas, this.
It is all kind of strange because I think I knew this was going to happen. I’d say for about the past two weeks I have been very nervous sitting in the passenger side of the car. I was constantly holding the door handle or the handle above. It is like I had this feeling of the front right side of the car dropping. Now I know why.
I can’t believe that there is only two more days until Christmas! I thought that maybe this Christmas A would understand what Santa is all about and the little things, but hopefully next year! I am so excited to teach him all about it and give him the special memories that I have from my childhood. And the added bonus of course will be using it to bribe him to do things!
So the past little while, I’d say almost a month A has been doing two wonderful things. Anyone that has a child with cerebral palsy will totally understand why this is so exciting for us. First he has been bringing his arms/hands to mid line and getting his hands to his mouth. This is HUGE for a child with CP as severe as he has. And of course with my new camera I was able to catch it all step by step! Don’t get me wrong, he has been doing this for quite a while but not as much and not with as much control as he has now.
Now saving the best for last. Up until this past few weeks A never held anything. And if he did it was not for long at all. His hands/fingers would be fisted and you would have to open it first and then give him what you wanted him to hold. Even then you would usually have to close his fist and wait till he got the idea. The things that he DID hold had to be small and basically rounded so it was easy. Well now he holds pretty much anything that you give him! He reaches for everything while he is on the floor and when he isn’t able to get it he gets VERY frustrated and upset. NOW, the most exciting part of this whole idea of holding things is that he now opens his thumb and index finger when you are passing him something! And this occurs EVERY SINGLE TIME!!! This is more than HUGE because normally children with severe CP have stiff hands that are turned inwards. The fact that he is able to relax enough to do this is just out of this world! I am SOOOO proud of him and what he continues to accomplish.
Okay so here I am holding up the cord to hand it to him and you can see how he opens his fingers…
Working on getting grip of it…
Pulling it up…
And there we go!!!!!!!!!
Just one amazing kid.
As you can tell I am excited about Christmas with counting sleeps. It is kind of a joke around here because J absolutely LOVES Christmas morning and is still a big kid at heart about it! Every Christmas that we have spent together he is up at about 5am, makes coffee and waits impatiently for me to get up. It is actually pretty cute! This will be our first Christmas here at home with A so we are pretty excited about the whole thing. I just wish that A understood what it all meant but hopefully next year! I cannot wait for him to believe in Santa and look forward to the big morning as much as his daddy!
Other than counting down days for Christmas things around here are pretty much the usual. A is still being horrible at night when we put him to bed and I really don’t know what to think about it. I know people tell me that it is a phase and such but it is so difficult to understand what is going on when he is not really himself during the day either.
Sunday night he almost went into one of his big spells and scared the crap out of daddy and I. Monday he had physio with Monique and he was NOT happy. About five minutes into it he was fussing/crying and AGAIN almost went into a spell. Which got me to thinking that I should have told the new neuro this that we saw a couple of weeks ago. You cannot “almost” go into a seizure. You either do or you don’t. So this makes me remember even more how I don’t believe that they are seizures. There are many times that he almost goes into one but then doesn’t. He looks like the beginning of them and at the end he looks the same, only thing is he skips the whole middle of them.
Monday I got my call back from the sleep clinic at Sick Kids and they have arranged for the ph probe along with the sleep study. They had no idea what an impedance probe is which just blows my mind considering they are one of the top children’s hospitals. Oh well guess I have to be happy with the ph probe. I was however very frustrated because I have two appointments on one day in January there anyways and this was the day that the lady said for the sleep study. I said for sure that would be great because then I would get two appointments over with and the sleep study that night. Much better than driving there two times! Well she had to call back and then decided that GI will not put in the probe BEFORE we see ENT because it could impede on their exam. I told her that I would be VERY surprised if they would do an exam that day as it has to do with blue spells. She then said that you don’t see ENT about blue spells. What?! Anyways I got it worked out for the same day except we will have to see ENT first which means an extra long day as they could only squeeze us in in the morning.
Now for some pictures! Yesterday grandma was here and thought A was ready for a nap. She had turned off his implant and changed the channel on the TV. Well that was it! He is so nosey during nap time that I have to shut off the TV or he’ll just watch it instead!
Well another busy week is over! Wednesday A had his PT and OT here together because we finally got him a benik to try. I have been asking about this for a long time but I find that sometimes people really haven’t done the research or learning on things that help kids. Anyways, his new OT happened to have one at home when I brought it up again last week so she brought it over. I wasn’t really able to see what he did for them with it on because his dietitian was here so we were chatting while they did his physio. However I did definitely notice some more stabilization of his trunk when I put it on him that afternoon. The only problem is, this kid is the hottest, sweatiest kid EVER that it just makes it ten times worse. He weighed in at 24lbs 7oz so up three ounces which is fine with me. I am so past the gain and gain idea because I have realized that if the child LOOKS healthy then they most likely are getting enough nutrition.
Here he was on the scale. Kind of funny that he was so happy as usually he goes very stiff and starts to scream. It took about five minutes before we were finally able to get his weight as he wouldn’t stop moving he was so excited!
So here he was sitting in his chair with the benik vest on underneath his shirt. He loves this slinky and anyone who knows A knows that holding this with BOTH hands is a HUGE accomplishment! Go A!
Thursday grandma and I headed to Kitchener with A to go to Toys R Us. That store is SO overwhelming! I did find a few things for A and I am so excited for Christmas to come! This will be his first Christmas here at home and I am looking really forward to it!
Friday I took A to his ped to get the other half of his flu shot. He didn’t like it too much but he is a tough little guy so he got over it quick. I was speaking a bit more with his doctor about the spell A had a few weeks ago (he was the one that came to the ER and told me he thought it was a seizure) and anyhow he said that the more he thinks about it the more he doesn’t think it is. This was after I told him about the echo last week and how A’s sats were so bad after only a whiff of nitrous. Ugh talk about being thrown in all directions! I have some telling me seizures (funny though because THREE neurologists that have said YES this was a seizure have all said DIFFERENT types) and some tell me airway and some say reflux and some say they don’t know. Where is my Doctor House?!?! LOL
This is what I am greeted to every single morning when my little man wakes up…
Today we had a pretty lazy day. A didn’t get up until 10am and then by 11:30am he was fussing to go back to sleep. I however kept him busy and up until about 1pm and he slept until about 3:00pm. His naps lately have been AWESOME! Although yesterday he skipped his nap for the day and that is probably why he got up so late today.
HE ALSO SAID ‘DADA’ AGAIN TODAY!
Daddy got home about 4pm and we got ready to head out for the annual Christmas gathering that we go to with my parents and their friends. Uncle S, Auntie A, Aunt Shorty and Rob all came this year too though which was a first.
I had a “moment” tonight there. Funny how things creep up on you when you least expect. There was a girl there that had two kids. I can’t remember how old the oldest is but I would guess about 18months. The little boy was a new addition and as I walked by to the kitchen I stopped and asked how old he was. The answer I got “he is 5 months old….he was a preemie though.” So of course I am curious and say “oh really how early?” And then she says “five or six weeks…I can’t remember. He weighed 5lbs 2oz and spent two weeks in the hospital and it was so hard on me. It is all such a blur to me now but I was exhausted. He has to have a surgery too for a hernia.” So I of course am blown away because of the fact that she is going on and on about this when she KNOWS my story. I eventually stepped away and when I saw my mom I started to cry. I went into the bedroom and I was just angry. Now I TOTALLY understand that for ANY mom who has a child early and spends ANY time in the hospital this would be a big deal. But when you are telling this to a mother that you KNOW spent nine months in the hospital with her baby that weighed under two pounds it gets to me. And when you know that her child has severe disabilities…when you know her child is deaf…when you know her child doesn’t eat by mouth. I just don’t get it. Do people not see past themselves?! These people really need to realize just how lucky they are. How their situation might have sucked in the beginning but really in the big picture it is so tiny. Anyways I don’t want to go on and on about it but I know that most of you who read my blog understand this.
Here is my little man holding his bells! (By the way, I would say about three months ago he couldn’t even come close to holding this!) He is funny now too, because when he sees you going to give him something he opens his thumb up…its really cute.