Posts tagged “grandma and grandpa

Fundo Is Complete!

Just a short update. Well the surgery is complete!! I am so happy to be past the worrying of how the surgery would go. I want to say first that the delayed emptying scan that he had prior to the surgery showed that he actually had faster than usual motility so this was a great thing for me to want to try out the g tube!

Well 8am A went into the OR. I was strong up until the point that we had to say goodbye and he had a huge pout on his face. The tears started and I just felt so guilty for doing the fundo when it is something I have fought for so long. The surgery was 4 hours long and we had the top surgeon and top anethicist in with him. Grandma and grandpa S came down on Sunday and grandma and grandpa C came down just as he was taken in to surgery.

Things went awesome with NO complications. They were able to do it by lap which was great for him! Once in there they realized that A had a hiatal hernia that was pretty large so they put a few stitches in the duodenum to fix it up. They also took out his gj tube and placed a g tube.

In recovery of course we had issues with his oxygen sats. He ended up having the ICU team and the critical care team come in to see him. Every time that he was touched or he moved he dropped down to the 30s. He was on 100% oxygen and satting about 94. He was then moved up to the constant care room after the docs said that he would be better off there at that point than in the ICU. He stayed at 100% with many, many desats to the 30s and 40s. I was frustrated and so tired that I was getting irritable with the nursing and doctors. I really wanted him to go back up to the floor that he has been on the past month but they said that he had to be on the surgical floor.

At about 9pm last night I finally had them up his morphine and he seeemed to settle right down. The RT was also called in and she hooked him up to the high flow at 60% where he stayed at all night last night. The nurse that was on last night was wonderful and the ICU docs told her that she had to be right there the minute that he rang. So J, his parents and I went for dinner and then got a good nights sleep at the hotel.

This morning his mom and I came over about 7:45am and I was livid when I walked in the room! He was under his blanket completely, crying, oxygen off his face and off colour. The sat however was saying 91 but then I realized that it wasn’t even on him! I told the nurse that I had a problem with all of this once I found out WHO his nurse was and she has been great since. It is absolutely insane that he is in constant care and yet things like this happen. And then they wonder why parents have to stay and not leave?!

They have been able to wean A down to 40% oxygen with sats about 96. He is definitely more alert today and not in so much pain. I am hoping to get the oxygen requirements down more by tonight. They are going to be starting to run clear fluids through his g tube any time now and see how he does. I am so nervous about this whole g tube thing!

Anyways, I am happy things are over with and I just hope that things improve within the next few days. Thanks for all the thoughts!!!

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No Cardiac Issues!

Sunday night we headed over to watch the Grey Cup with grandma, grandpa and their friends after getting our family Christmas pictures done. WOW that was not fun and I can’t believe how grumpy this kid is when it comes to picture time! Here at home he smiles as soon as he sees the camera but yet whenever we go for photos he is the most miserable child ever! I did everything but hang upside down to get a smile out of him!

Hanging out watching football…

Notice how he is holding BOTH of his socks! Way to go A!

Well we had quite the day yesterday at Mac for A’s echo! Grandma came and picked us up at 6:30am and we were there for 7:30am. A was in a super mood which was surprising as I had to wake him up and he didn’t sleep much on Sunday night.

Mommy in her scrubs and one happy boy!

At 9am we were taken over to the OR with A. I then had a chance to talk to the nurses and the anesthetist about A being put under with a general anesthetic. I am always very concerned because he doesn’t do well afterwards coming out of it. The anesthetist decided that they would try and do the echo without the general. At 9:45am A was taken into the OR. At 10:30am the nurse came to get me to go into the recovery room to see A. I was immediately basically thrown onto a stretcher as another nurse took my coat and purse from me. A was then handed to me and it was obvious that he wasn’t doing too well. I thought that they had ended up doing the general and this was the problem.

The anesthetist then came over to talk to me about how things were done and her concern on A dropping his sats to the 50s and 60s continuously on six litres of oxygen. I said to her that this is ALWAYS how he behaves after a general anesthetic. This is when she told me that he didn’t have one. He didn’t even really have sedation. The only thing he had was a “whiff” of nitrous oxide which she said was enough to last maybe ten minutes. What?! Then what is going on?! No one knew. They were suctioning and did a breathing treatment. He went to sleep on me and was doing “okay” at this point with the odd dip into the 70s. However as soon as he would start to wake up and move he would start again with the drops.

The cardiologist came in to speak to me and that is when I got the great news that A does not have any cardiac issues! A year ago his echo showed that one of the vessels that grows in the muscle of the heart was actually turned into his left chamber and they were concerned about that. It corrected itself though so we are free of cardiology!

Finally at about 1pm A was transferred out of the PACU and into the day surgery recovery. However his dips still continued and I was getting VERY frustrated. I just don’t understand how this goes on and on but yet NOTHING is done?! Grandma was finally able to join us and A went right to sleep when we laid him on his belly and gave him his lifesaving soother. The nurse had his oxygen turned down to just under a litre and he was satting 80-84 consistent. Finally about 4:30pm he was up to 88-90 consistently. I however was not pleased with all this going on and just wanted to get to the bottom of it. The anesthetist kept coming in and was worried about what was happening. She then mentioned that he might be admitted. I of course fought that because I don’t need him catching something else up in the ped ward. I then asked what was going to be done if he was admitted. Nothing….just observation was her answer. Well I can observe him at home and we have oxygen here.

When I was talking to her later on I asked what she thought was happening. She immediately said airway issues. Thank you! That is what I have been saying for so long now I don’t even remember!!!!!! But then of course it comes down to the fact that no matter where we are (hospital) and he does this NOTHING is done. No tests are ordered and we are sent on our way. I just don’t get it.

At about 5pm A woke up and I was trying to keep him happy. The anesthetist wanted to see him awake and what he was up to before sending us home. Well wouldn’t you know it he was not happy and constantly dropping to the 60s,70s and so on. The only way to keep him happy was giving him water! Of course I automatically think he has a fever because he only drinks with a fever but nope. Probably the nitrous and all the oxygen. Grandma couldn’t give it to him fast enough! LOL

FINALLY at 6pm she said we could go as long as he was put back on the oxygen here at home and that if I was at all concerned that I would take him in. Sure thing! (I had to laugh in my head because EVEN when I DO take him anywhere there are no answers. *^$& even calling 911 didn’t get us anywhere. How sad is this?!??!

We were home about 7:30pm and A went right to sleep. He did well last night and is a happy guy today. Still on a half litre of oxygen but home….

Keith Urban In Detroit!

Well this was my weekend away and I had an AWESOME time!! I dropped A off in C-town on Saturday around noon. Grandma S was so excited to have him to herself for the weekend and I was happy that I was able to get away to Windsor without having to worry!

I went to Windsor to stay at Tina and Derek’s and we were in for an awesome night of fun! Derek drove us all the way to the Palace in Detroit so that we could see Keith Urban! We had 19th row floor seats and it was amazing to see him so close. He had a stage down the center as well and when he sang there we were only about six seats away from him!

I have WAY too many pictures so I just picked some of the best ones…

Gary Allen was the opening act….he was very good too!!

After getting home from the concert we didn’t do much because we were all so tired. The clocks went back in my favor as I was able to get an extra hour of uninterupted sleep! I slept from 12:30am until 11am! I don’t even remember the last time I slept nearly that long…it was great.

Tina and I met up with Aunt K for lunch before I headed back to C-town to pick A up. He was a very good boy for grandma and grandpa and she got some great pics that I will post when I get them!

Thanks again grandma for taking A for the weekend!!!!

Now of course I can’t end a post without a picture of my little man…

My Little Man Is Getting BIG!

Well it has been a crazy few days here! I haven’t blogged in a while so I have a bit to update on. First, still no luck yet with getting A covered for RSV season this year. I have a couple of calls to make today that will hopefully get me somewhere.

Thursday night was a nightmare here as A once again had a pretty rough night. I am not too sure what is wrong with him when he does this, but he is VERY fussy and just not comfortable. I really can’t wait for this sleep study! I think he might have had an upset tummy because his tube site was bleeding and Thursday night before going to bed he had been vomiting a lot of formula. At one point it looked like a whole entire can. I diluted his feed for about 24hours when he was acting better and had not been vomiting. But thankfully it never turned into anything more and he is fine!

Saturday grandma and grandpa S came down to spend the weekend. They got here just after noon and we headed over to Uncle S and Andrea’s house for their housewarming. A was pretty tired but had a hard time sleeping as there was way too much going on.

After leaving there we all headed over to grandma and grandpa C’s for dinner. We had our “wedding talk” and have some plans in place. Now I just need to get my butt in gear and start making deposits and reservations! I can’t believe how fast time is going and cannot wait until the day that I get to walk down the aisle!

Sunday, A went to the Storm game with daddy and grandpa and grandma S and I headed to Kitchener to the wedding show. I was glad that I went because I found an awesome photographer, a fabulous cake decorator and even got some great ideas for things that I want to do!

At the game…

We got back around dinner time and then we all headed out to eat at Shoeless Joe’s. Grandpa and grandma S then headed back home and we came home to head to bed. A had other plans last night and decided he wanted to stay up until 11pm! I am happy to say that I only got up ONCE with him last night and I actually had to wake him up this morning for physio and OT.

I couldn’t resist these pictures before waking him up!

So we started the breathing treatments with the nebulizer for A on Friday night and they are going well. The first time that he had one he was pouting and didn’t know what to think. This morning he actually didn’t need me to sit and hold it for him and he just watched the TV. I can’t say that I really notice a difference with the treatments yet compared to the puffers, but I do know that he is getting more of the meds this way than the other.

This morning A had Monique and Shelly here to work with him and he did VERY well!! Check out these amazing pictures!

After physio and OT A had his nutritionist here along with his speech therapist. Yes it has been a crazy house already and we still have his auditory speech therapist this afternoon!

Anyways, A now weighs a whopping 24lbs 1oz!!! That means he has gained 22 pounds and 8 ounces since he was born! That also means he went from 710 grams to 10,931.58 grams! WOW! She also measured him today and he is 80cm which is 31.5 inches. At birth he was 10.5 inches or 26.67 cms!

His speech therapist David and I decided we are going to wait on the feeding study to decide when he will be coming back.

Thanksgiving Dinner With Grandma & Grandpa C

We had another Thanksgiving dinner tonight at grandma and grandpa C’s since they were away last weekend up North. It was VERY good! Can never have enough turkey!

A LOVES this dog! It sings and moves around…

YAY he is holding the moose! (This kid has been amazing us with how well he is doing at holding on to things lately and has the determination that you wouldn’t believe!)

He knows what scratch ticket is the winner haha…

Uncle S and Andrea…

A RARE picture of A and mommy!

And yet another rare picture of the three of us together…

Daddy play fighting with A. He thinks it is the funniest thing!

Laughing before daddy even does it because he knows what is coming…

Two Birthday Wishes & A Busy Thanksgiving Weekend!

October 6th was Cujos 5th birthday!

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

Already Feeling Overwhelmed With Wedding Plans & Meeting Darcy Tucker!

Well it has been a crazy week around here! A’s tube that he had placed in London just does not want to stay in the spot that they marked it and it is driving me crazy! He has had a lot of vomiting of thick mucus and a couple of times he had projectile bile. Really gross stuff and frustrating when I don’t know why. I can only assume that his gut is irritated from having the new tube placed.

Wedding plans! AHHH I feel like I don’t have enough time to do everything and it is still so far away. The date is set and I have three places that I am looking at next week. My mom and I are also going to a bridal show in September so hopefully I will be able to book the DJ and the photographer then. I am SO excited about this day and I can’t believe still that it is going to happen! J and I have also picked out where we would like to go on our honeymoon so that is just one less thing to worry about. This day has to be absolutely perfect and I know with everyone involved that it will be just that!

So A has been impressing me this week with yet something else that is new. He now will sit in his swing and look at his feet! There was also one night that he was actually trying to get them and it was so obvious my the determination in his face! I was almost jumping up and down as this is a HUGE step if he was to start touching his own feet! I couldn’t catch a picture of it, but here he is in the swing…

Monique his physiotherapist was here the other day and she just cannot believe how well he has done over the summer. He is getting so much stronger with pulling his head forward, holding his head up, standing nicely, sitting nicely (supported) and just everything! She also told me that I am in the 1% of parents that she sees that are totally into their kids, advocating for what I believe is right and the knowledge that I have. So that was a very nice comment from her. I guess it just isn’t something that they see all of the time.

So today I took A to meet Darcy Tucker at the Future Shop that just opened here. For those of you who don’t know who he is, he plays for the Toronto Maple Leafs. I had also written him a letter and wasn’t sure that they would take it, but they did. My mom told him that it was a very special letter from Ashton and he smiled and said okay. We stood in line from about 10:45am until 1:30pm to meet him. It was raining when we first arrived but then it cleared up which was good.

Waiting patiently with grandma…

Smiling at grandpa…

Still waiting patiently, but almost there!

Getting tired…

The line moved quickly because he was just signing his name…no pictures with him or anything specific being written…

Looking at A…

Signing A’s hockey stick…

Grandma telling him about the letter…

Grandpa getting another stick for me signed…(my letter is under the sunglasses!)

Happy Birthdays, Swimming & Tears

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….

Holidays Are Over…..

So our holidays are over now. We headed down to C-town on Friday to spend the weekend with grandma and grandpa S. Aunt K also came down to visit with us. It was great weather and A got to go swimming again!

On Saturday morning Aunt K and I went for pedicures. It was my first time ever getting one and it was so nice!!!

A in his pony walker and getting kisses from Cujo…

On the car ride to C-town…

A sitting outside looking as cute as ever!

Hanging out with grandma…

Pony walker time!

Aunt K entertaining him…

A and Rocco…

Being the silly little ham he can be!

A absolutely LOVES bath time and grandma LOVES to give him baths! He had water everywhere and grandma was a little wet too. 🙂 Grandpa helped out on this one too…

A trying to rock his chair…

We got back late on Sunday night and A went right to bed. Yesterday A was back into his regular busy schedule with appointments and workers.

Playtime with Shelly…

Today was also the first time that he had his auditory verbal therapy with Deb again. She had seen him last before his implant surgery and now we are back at it. With having the implant now, we have to sit around the table with him so that we can all take turns making the sounds or singing to A. He wasn’t feeling the greatest but did a great job. He started to run a low grade fever and his vomiting was starting.

Therapy with Deb…

Burn Rubber baby!

Last night was pretty rough for A. He was up vomiting a lot and it is obvious that he just isn’t feeling well. He had physio this morning and pretty much the whole time he had his eyes closed and was fussing. Liz was also here to weigh him and he is 22lbs 9oz, so down one ounce from the last time. This is the second time in a row that he has lost weight. Not too concerning to me though as he looks very healthy. We also measured him and he is 31 inches! That means that he has grown by two inches since last time!! Could also be the reason he isn’t gaining. Not to mention the fact that this little guy is constantly moving around! I cannot get over how active he is during the day now. If he could get up and run he would!

So the implant was turned up to the next program on Sunday. He has done well with it and isn’t jumping when it is turned on. Deb was very pleased to see how well he is doing with turning to sounds already. I cannot get over how much his being able to hear has changed his personality. He pouts a lot now and can even act scared of toys or different things. This was something that he NEVER did before!

At day 16 of hearing age I am very impressed. I was thinking that I wouldn’t notice anything for a long time but I already can. Recognition and imitation is going to take much longer but hey that is okay because all that matters is that my little man can hear now! I am so amazed at what this has done for him!

Protected: We Are Back From Our First Family Vacation In The Wilderness!!!

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Pictures Pre-Activation, During Activation & Day 2 Of Hearing Age…

If you haven’t already read about the activation read that first and then come to the pictures…

At grandma and grandpas the night before activation…

haha he looked way too cute in the car I had to take this!!

Waiting at Toronto Sick Kids…

Grandpa having a power nap…

Activation Time!!!

Ruth (his audiologist) is setting the three probes that are in the implant. Beeps are played until she gets reaction…

I had to get some blocks to keep him from being so fussy…didn’t work that well…

Sleepy little boy…

He loves when you lift your glasses up and down so that is what I was doing here…got a little smile…

Trying his phone now…

Activation moment!!!!!! Look at that pout! (Click on the picture to see this absolutely PRICELESS pout!!)

Ashton hearing mommy talk for the first time…

He is awake now…not really knowing what to make of anything going on…

Today was day 2 of A’s hearing age. I left the implant turned on while he napped today because I was interested in seeing how he would sleep and it didn’t make any difference to him at all. I also turned the implant up to program number two today without really noticing much from him. But hey, you wouldn’t expect a newborn to react to voices so I can’t expect him either yet! And notice the YET!

This is a picture of what the implant looks like. The round piece above his styling’ band aid is the magnet. The piece on his ear is what holds the microphone. They are connected together and then go to the little piece he wears around his waist which is the computer part of the implant.

Oh, and by the way, I got the same reaction with the band aid coming off tonight! 🙂

Today Was Activation Day For A’s Cochlear Implant!

Well FINALLY our little man can hear! We got down to Toronto almost two hours before his appointment time so we had a while to hang out and waste time. We drove down with grandma, grandpa and aunt Shorty. Grandma S met us down there with J’s aunt Tammy and his cousin Hallie.

We all headed upstairs just before A’s 1pm appointment time. I don’t really know how I was feeling. Things just happened so quick today that I don’t think that it really had time to kick in.

Ruth who is A’s audiologist had a little bit of a hard time because A was SO SO SO tired and grumpy. I have to say that it made me feel a little bummed out that it didn’t go how I thought that it would. There was definite reaction to the sounds when she was setting the implant but when she turned it on there wasn’t really anything. We knew that he was hearing but he didn’t have the “normal” crying that the kids usually have. Daddy was holding him after it was on and he was pretty much sleeping. There was one point where Ruth said something and A did jump.

She programmed two other programs on the implant so tomorrow he will go up one and then on Wednesday again. Each of these programs will make things a little louder. Today she set it so that it would sound like a loud whisper to him. We will have programming for the next little while until things are where they need to be.

The drive home was pretty frustrating. Because A turns and arches so much he would knock the magnet off and then it starts beeping. I don’t even know how many times that happened!

We all went back to grandma and grandpas after the appointment. A FINALLY decided that he was going to have his much needed nap. Grandma S, Aunt Tammy and Hallie left just after 6pm and then we all had Chinese food for dinner.

There was some positive reactions from A tonight before we left there. I had banged on the floor (something we have always done) and said “bang” at the same time and he jumped!!! His very FIRST startle EVER!!! Grandma was also making a popping sound and he turned and looked up at her.

The thing that makes this so hard is that we have to keep remembering that today is actually day one of A’s hearing age. So basically just like a newborn. He hears everything but he has to learn what sound and speech is. The same way that every single baby has to. And with being two years old already it is always more challenging. I was told by another mom that has a child with the cochlear implant not to really expect anything for 12-18months. A long time to say the least but at least we are one step closer.

So many people think that A had his implant turned on today and now he can hear and thats that. Well it is FAR from the way that it works, so I hope that the way that I just explained it helps make more sense for everyone.

On our way home I decided to stop in to Shoppers and see if I could find any wig tape. I was thinking of placing under the piece that goes on the magnet to hold it on better. However I couldn’t find any so I ended up just grabbing some Shrek band aids. So tonight after A had a shower I tried it and it worked great! That was until he wanted to go to bed and I went to take it off. Well it was stuck to his hair pretty good and was not coming off. So J told me to just pull it off really fast. I grabbed onto the magnet and A started to laugh. J was laughing. I couldn’t pull though because I was so afraid that I was going to hurt him. Finally I just did it and what did A do!?!?! Starts laughing! And I mean LAUGHING! He was so red from laughing so hard and he was giggling!!!! J and I were in tears. So we put the band aid on his cheek and pulled it off and he did the same thing! Laughing out loud! I put it on my cheek and helped him pull it off and once again more laughing. Man, all this time we have been trying to get him to laugh out loud and all we had to do was rip a band aid out of his hair! haha

Anyways, I really need to get to bed as I didn’t have the greatest night last night. It is almost like A knew that something was going to happen today.

I am sorry but I do not have pictures yet as grandma took them on her camera. I will be posting them tomorrow. And as for the video, well it really isn’t much to see but I will figure out how to do that as well.

Thanks everyone for your kind words and thoughts for us today. It was definitely a very exciting day and now comes the work of teaching this little munchkin sound and speech!

Long Weekend Fun In C-town!

I hope everyone had a safe and fun long weekend! We ended up heading down to C-town on Sunday morning. A last minute visit but we know that A is always welcome at grandma and grandpas! He was a very big boy in the car and I was able to sit in the front seat both there and back!

It was a busy household as J’s aunts, uncles and cousin were all there as well for a visit. A got some swimming in on Sunday although the air was pretty cool with the wind. I can never get over how much this kid loves the water!

Daddy and A hanging by the pool…

Grandma and A (he kept wanting to stand up)…

A and great grandma…

Swimming with mommy and daddy in the pool (it took him a while to get used to it but once he did he loved it…

Playing with some new toys from grandma and grandpa…

Laughing at the lights being turned on and off…

Daddy and A relaxing outside!

Grandpa…need I say more? haha

A being his silly self for the camera!

Look at that smile!!!

So sweet and innocent…

More pool time with mommy and daddy…this time was actually very funny. It was very nice out yesterday therefore the water felt cooler than the day before. I would dip A up and down into the water and he was CONSTANTLY making sounds. Then I would sit him on the top step of the ladder and he would smile and laugh. He must have done this for about twenty minutes. Of course my video camera had died so I was not able to get it but I will DEFINITELY be trying that again next time we are down there. He had all of us laughing pretty hard!

A making faces with grandpa…

In the pool with daddy…notice the matching swim shorts?

A and grandma…those eyes! (Click on the picture to see what I am talking about)

We had a great time and wish we could have stayed longer to visit and hang out around the pool!!

We Are Home! Cochlear Implant Is In….

Well we are home from Toronto Sick Kids. We got in late last night (about 11pm). So I guess I will start at the beginning….

A the morning of surgery at home. He doesn’t look too impressed to be woken up at 5am!

We headed out of here at 6:30am on Monday morning so we could be at the hospital for 9am. Well, that didn’t work quite as planned. As we came up to the 401 we noticed that the traffic was backed up ALREADY. So we just kept going straight to get down to the 403 to try that way. We did okay for a while and then the traffic was stop and go. I was having some major stomach issues during the drive because of my nerves and the traffic did not help at all. We didn’t get to there until about 9:45am. I was all panicked that they would cancel his surgery and so on because we were late.

A and daddy in the first waiting room waiting for the nurse to come and prep him for surgery!

Grandma and A…

I was very impressed with how well I did throughout the whole morning. I thought for sure that I would be a mess but I held up! My stomach issues continued until late Monday night when everything was over with.

Mommy and daddy getting him changed into his gown for surgery…

Look at my smiley little guy before surgery! (If he only knew what was coming!)

After seeing the nurse and having his vital signs and oxygen sat taken we were told to go back into the waiting room and we would be called downstairs shortly.

Now waiting to be called down for surgery!

Excited mommy and daddy…(grandma got a GREAT picture of the three of us together…I will post it when I get it here!)

Finally we were taken downstairs. WOW, I felt so good at this point. We talked to the anethicist and the nurse that would be with him in the OR during surgery. Dr.Papsin also came out to talk to us briefly. I think having such an amazing surgeon put me more at ease with the whole ordeal.

In the final waiting room waiting for A to be taken into the OR. (By the way, I did very well holding myself together!)

At about 11:10am A was taken away from us and into the OR. The countdown was on! They told us to expect him out around 2pm.

Grandma, daddy and I went to get some food and to try and take our minds off of the worrying of the surgery. About 1pm we were in the waiting room where daddy and I tried to get a little sleep. That didn’t last very long because Dr.Papsin was out to talk to us just shortly after 2pm.

So the surgery was very difficult for him to do. There was a TON of bleeding and his blood pressure, oxygen sats and heart rate kept dropping. At this point they would have to stop and wait for him to recover which was causing more bleeding. He told us that he believed something was going on with his heart and that there were many opinions happening in the OR. We were a little bothered to hear all of this as it really wasn’t what we had expected. At any rate, Dr.Papsin was able to get the implant in and it was working. (They hook it up to the computer after implanting it and make sure that it works.)

A was vented for the surgery therefore he had a pretty hard time coming off of it as he was on a lot of morphine. We were not able to go into the critical care room until 4pm to see him. He was having problems with his oxygen levels for a while but they had him stable. He was not able to be transferred up to his room in constant care until almost 10pm.

A about nine hours after surgery. Just got out of critical care unit and up to the constant care room.

So the first night was pretty rough for A. Daddy and grandma left about 10:30pm. He was on codeine, tylenol and motrin continuously. I headed down the the surgical waiting room to get some sleep on one of the couches. When you are as tired as I was, ANYTHING is comfortable! I was only able to get about 2 hours of sleep before I was called back up because A was very irritable. He wanted to be held constantly.

The day after surgery…I got a couple of little smiles from him.

The doctors came in on Tuesday very early to check on his incision site. There was more bleeding going on than usual still and they had to keep a close eye on it. The bandage had to be changed four times during that night and normally it isn’t changed at all. Later on that day they took out the drainage tube that was in behind his ear.

Tuesday night was also a long night. He was once again very irritable and still receiving all of the meds. The nurses said that normally children who receive the implant do not even want pain meds, but with A they kind of expected all of what was happening to happen.

I headed down once again to get some sleep and had about four hours. I felt like a zombie yesterday walking around.

Dr.Papsin also told me that day that A is a tough little guy and that is why he was there. Made me feel good. He was happy with the way that things were looking around the site but just wanted to wait for A to go home because he wasn’t himself.

A yesterday sitting in his chair. It was his first time being out of bed and he wasn’t really himself this morning still.

Grandpa stopped by for a bit to visit. It was nice having someone there as I had been by myself since the night of surgery when daddy and grandma left.

I also had cardiology come in to see A yesterday. Dr.Papsin had arranged this after some fussing on my part because of his blue spells and what he was doing during surgery.

At first they said they couldn’t overstep Mac because he was already being seen there. A little while later they came back and said that Mac has discharged A from cardiology. Huh?!? I have been waiting for three months now for a echo to be done. Pre-op was in the beginning of March. They were VERY confused.

However, the cardiologist said that his heart sounded good and that he didn’t think that was the problem. This was a good thing but at the same time still left us with no answers. I asked him what could be causing the issues and he came back and told me that he had just looked at the xray from the 11th and that A’s lungs are awful. He said they are all patchy and that is his problem right there. Once again I am confused because I have been told in the past while that his lungs are fine and there is pretty much no lung disease. Cardiology told me that they think it is from him aspirating and when it is small amounts it causes damage. Ugh, yet another problem now!

Later on in the day…

So early in the afternoon I was still complaining about his blue spells and his sats. They didn’t seem too concerned because he wasn’t really doing his “norm” as he was still on oxygen. I left in tears and when I came back, guess what?!? A had one of his BIG spells, the apparent life threatening events! The docs that were dealing with him and everyone else saw what happened. He has not done one of these since April 4th.

Around dinner time last night…much more himself. Hanging with his koala from Dr.Papsin. This koala has a cochlear implant as well 🙂

So late last night the docs discontinued the oxygen because he isn’t on it at home. A was asleep and satting 98-100 on the oxygen. It was turned off and he went down to 75-85. Turn it on and he would go back up. It was very obvious that it was helping him. However, long story short they STILL sent him home.

I was pretty emotional all the way home. I think it didn’t help that I was WAY over tired. But the great thing is, is that A had a great night. He still has continued to vomit blood but when he did it in the hospital they said it was most likely from the intubation. I will definitely be keeping an eye on this.

A today with no wrap on his head.

Incision site…

Today he has been himself totally. It is great to see this! Grandma was here for a bit and now I am going to try and lay down and have a nap with A!

Oh, this is the best thing about today. Cardiology from Mac called and want to do A’s echo next week. I thought he was discharged?!?!

Protected: Happy 2nd Birthday A!

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A In His Bicycle Trailer!

Well I thought I would do a post before J and I head out for the night!! Yes, the night! Grandma and grandpa are taking him and the dogs until we are back tomorrow!

So we have already gotten good use out of A’s bike trailer. We have had him out almost every night for a ride and he seems very content in it as long as it is moving. It is really nice to be able to do things as a family that we probably never thought that we would be able to do at one point.

Friday Dawn was here (A’s PSW) and she brought him some new toys that she had found while she was out and thought that he would like! She found this little cat that makes the “meow” sound and he LOVES it! Very nice of her to do for him.

So A has started with his vomiting again. Very frustrating for me to understand because nothing has changed since he had this new tube put in. Mind you, it isn’t at the amounts that is was a month ago but enough that it is affecting him. I really wish that there was something that I could do to fix it for him.

Speaking of reflux, that has been a “hot” topic in a group that I am part of. A lady had asked a question about reflux for her daughter and a few of us replied. She had wondered if it could also affect the childs breathing. I wrote back stating that it definitely would cause issues with breathing and the upper airway along with pain and discomfort. I had also wrote how A has had life threatening events related to his reflux and that I wish there was a cure for it. Well it all began there. I had another mom tell me that “there is a thing called a fundo and that cures reflux.” Are you kidding me?!

Now, anyone that knows me knows that I do a TON of research on all of A’s issues. There is NO CURE for reflux! This is a very sensitive topic for me because I have been dealing with it now for a very long time. If there was a cure for reflux then there wouldn’t be babies/children/adults suffering every single day. There wouldn’t be babies/children dying from this nasty diesease. And most importantly, if this WAS a cure then A would have had one a LONG time ago!

Don’t get me wrong, I do know moms from my reflux group that I am part of that have had great success with the fundo. BUT and this is big BUT there are way more kiddos that have had one done and now have more issues than they did before. And that is not something that I am willing to put A through. Plenty of these kids have had to have the wraps redone. Some three, four times. Some kids have retched so bad (retching can be a side effect) that they end up with their feeding tube out of their mouths! One little boy was retching so bad he spit out a staple. Why on earth would I want to take these chances with A?!

Anyhow, I am off to get ready for my night of partying!

Stressing Over A’s Cochlear Implant…

So it has been a few days since my last post. Friday night we ended up finding a bike trailer for A! We went to a sport store in Guelph and they carry the Chariot brand trailers. We put a helmet on A and sat him in this one and he was perfect! It has really thick harness straps that hold him in perfect and behind his head there is room so that the back of the helmet has its own space. I have to tell you thought that he HATES the helmet! I think once he gets moving though he will be fine. I also will probably have it on him throughout the day for a while to help him get used to it. So we should have the trailer by the weekend for him!

Saturday daddy worked a VERY long day. A didn’t get up until about 9am and we hung out here for a while before grandma came and picked us up. We went and had Dairy Queen before heading over to grandma and grandpas for the evening. A had a great nap on Saturday once again!

Sunday A didn’t get up until about 10:30am. I took him with me to the grocery store to pick up some stuff to make a broccoli casserole for dinner at grandma and grandpas again! They barbecued a roast so it went great with it! We all helped Aunt Shorty move some of her stuff into her new place as well. I always wish that she was more involved with A and his life but I guess that is a normal feeling. I have that same feeling with a lot of people.

Today grandma was here and A was still in bed when she got here! Yep, he didn’t get up until about 10am. I cannot believe the difference in him since I pulled his tube out by accident two weeks ago! (And yes, STILL no vomiting!)

So after getting A ready this morning we headed out to Cambridge to go to Michaels. I was very disappointed with the selection for scrapbooking! Someone really needs to open a scrapbook store around here!

Deb was here this afternoon to work with A. (She is his auditory verbal therapist.) I am getting very anxious about this whole cochlear implant process with A. It is like I worry so much about it that I feel sick to my stomach. His MRI is coming up and that has me worried enough. When it comes to a general anesthetic and A I always feel like this. Right now I am just so worried that they are going to tell me that A is not a candidate for the surgery.

I was also a bit emotional and upset today after Deb left because we had a little chat about where she thinks A will go after the implant if he is to get one. My biggest wish is to hear him say mommy, I dream about this happening one day! I get tears in my eyes just imagining him saying it to me! But for some reason deep down I don’t think I will ever get to hear my baby call me mommy. I want so bad for him to talk! It is the most heartbreaking thing for me to think of right now. I can’t even continue with this right now, so here are some great pictures from his shower tonight with daddy.

A Is Back!

So it has been a few days since I have posted, but I am happy to say that A if fine now and back to his old smiley self! Actually maybe even a bit happier than his old self!

Thursday went okay, he was still a bit fussy off and on but it was definitely better than Wednesday or the rest of the week. He actually slept all night on Thursday which was a bonus because it is VERY unusual for him to do this. Of course his sleep was interrupted early as I had to wake him up at 6am to get him ready to head to Toronto Sick Kids for 9:15am. Grandma and grandpa were here to pick us up at 7am and it took two hours to get there! I cannot stand the early appointments because we get stuck in the traffic all of the time and it is just insane!

So the appointment was for his pre-op for his MRI and CT scan. He will be put under a general for this and they decided that they want him to stay overnight after he gets it done. I am a bit frustrated with this because he has had a general before and just had to wait a couple of hours before leaving. I think with his history and cyanotic episodes that he has on a daily basis they are just being safe.

When they hooked him up to the sat monitor, he was only at 87. The nurse waited and waited and he pretty much stayed around there. She said that he can’t do that all the time and I said yes he does. She asked if the docs are investigating it and I said no with a little laugh. After a bit he came up to 95 so she used that number for the form. I would say that his average sat is 92.

Anyhow, he was in a great mood the whole entire day at sick kids! When we left he fell asleep in the truck and we drove around a bit so my parents could reminisce about the past since they grew up in Toronto. We drove by my grandparents old house, wow that was strange! Haven’t been there in almost twenty years. We then went for lunch at Swiss Chalet before heading home.

Last night after daddy got home we went and bought bikes! Now we just need to find a bike trailer for A. I actually found a place that builds them and they are right here in Guelph. I think I will take A in one day this week and see how I like them. The one at Sport Check he sat in fine, but this other place builds them for special needs. And I think once he gets bigger he will need the extra support for his head/neck/trunk.

Today was a good day as well with A…..I need to get to bed though as my eyes are trying not to close! Oh, and I don’t know who left the comment the other day about A’s soother being in upside down but that is the way that he likes it. I know how it really goes but he cannot hold it in by himself that way. I think with his bottom lip over the top edge it helps him. Oh well, your comment gave me a laugh! 🙂

A and mommy the other day playing around with the camera!

Crying, Vomiting, Blue Spells….NOT The Little Man I Am Used To

Well I guess I have been slacking a little bit when it comes to blogging but I have a new hobby! Scrapbooking! I have so many pictures of A and have always wanted to scrapbook all of his pictures. However I never knew WHERE to start so I actually never did any. I would buy things when I was out if I saw something I liked for doing the scrapbook but that is as far as it went. Well Andrea, my brothers girlfriend came over on Friday and brought all of her stuff and I did my first couple of pages. Now I am hooked. I guess it is a good thing because I have about 400 pictures just from when he was in the NICU sitting around.

Anyhow, A hasn’t been doing the greatest for the past little while as most of you know. The reflux, the vomiting, the blue spells are all starting to really have me concerned and frustrated. We will be seeing his GI doctor this week and I really hope that she is able to get him better or figure out what is going on.

Thursday I did some major cleaning in A’s room. I got rid of a ton of clothes that he doesn’t wear anymore and cleaned out all of his drawers and his closet. I had laid him in his crib while I was doing this because he seemed a little tired and to my surprise he fell asleep! This is the first time EVER that he has had a nap during the day in his crib. It didn’t last very long, maybe 25 minutes but it was exciting.

Friday his PSW came over and I was just updating her on A having his big spell when all of a sudden I thought he was going to show her what I was talking about. He was VERY off colour and not doing well. I gave him a bunch of ventolin and eventually he was okay. He did not go into a full spell but he had me very scared. I called to order some suction catheters as the ones that I have here are from when he first came home and very tiny. So my dad went and picked them up and brought them over. I thought that maybe it would help him because he sounds so “gunky” but I was wrong. I went down one side of his nose and didn’t get much out. He had tears and was very upset and I just couldn’t bring myself to do the other side. Had I have gotten a lot out the first time then I probably would have but it wasn’t worth it.

He was very upset pretty much the whole entire day and was not himself. Even Dawn had commented on how he just wasn’t right. He is fine as long as you are up and holding him but he doesn’t want to sit, lay or do anything but snuggle. Dawn had him down on the floor playing with him and then all of a sudden he had a HUGE projectile vomit. It was all over the place. There was so much that it soaked right through his clothes and got it all over her pants as well.

Uncle S and Andrea ended up staying for dinner on Friday night and A had to be shown off in his stander…

Saturday A seemed a little bit better, but still a lot of vomiting. I just don’t understand how someone so little can throw up the amount that he does. It just doesn’t make sense to me. You can tell how much it is affecting him though because he isn’t AS happy as he usually is. His naps have also shortened in length and he usually wakes up crying. Definitely NOT the little man that he was.

Twice on Saturday he also went so off colour and had this look like he had just come out of a spell. It was really strange and I don’t know what to think about it. Daddy put him to bed after he had fallen asleep on him and the minute he was put down he let out this horrid scream and when I turned on the light he was very blue and had that look I was talking about…the end of a spell. I can’t even describe it, it is something that you have to see. So I immediately picked him up and got him calmed down.

I went out Saturday night late after daddy got home from work to get stuff for my scrapbooking. While I was at Wal-Mart I walked by a little boy with his dad. He was maybe 4 or 5 and he was in a motorized wheelchair. Well my tears just started flowing. I think it was seeing this cute little guy in the chair that made me realize that one day that is going to be A. I don’t know why it hit me then, I see people in wheelchairs all of the time. I think maybe it was because this little guy was so young. I don’t think it helped that he was with his dad and they were looking at tackle boxes. The boy wanted one. So they were trying to pick one out that he wanted. It was really sweet. I really wanted to talk to the dad but I didn’t get up the nerve to say anything.

Here he is asleep on daddy late Saturday night…

So today has been another crazy day. He was pretty much good all morning vomiting wise but then it started. And boy are they ever projectile. And just tons and tons of bile. We went over to grandma and grandpas tonight to have dinner and just get out for a bit. He had a few of his vomiting episodes over there with the last one really upsetting him. I was sitting on the other side of the room and knew from the sound of it that it was projectile. Sure enough it was. More bile. He even had it coming out of his nose and was crying as well. This is also something that he never used to do (cry). It was a good few minutes before he settled down.

I have also been noticing lately that his breathing is odd. It is like he is struggling to get air into him. Very long pauses…wow, I feel like it is the beginning again when we first brought him home. It really sucks because I feel like there is nothing I can do to help him. I hate to see him this way and I am getting frustrated with doctors as well.

Now some pictures from today…as you can tell lately from my pics, A isn’t the smiley little guy he was. Don’t get me wrong, he still has them in there but you can really tell that whatever is going on with him is bothering him.

I Am Back And Have A Ton Of Photos!

Well I am sorry that it has been a while since I have done a post! I know that I have received a few concerned emails from people. I am happy to report that A has NOT had another of his life threatening events. I also wanted to thank people for their concerns, caring and thoughts on what could be happening. I do want to say that we know it is NOT bronchospasms. The only answer the docs have ever had was that they are ALTES-apparent life threatening events.

I took A to see his pediatrician on Thursday. I of course knew that he wouldn’t have answers for me as to why he has these ALTES. We both did agree that it is probably related to his reflux (which most ALTES are) because of how bad it has gotten over the past couple of months. So we increased his prevacid from 15mg/day to 30mg/day. I really hope that it will work! 15mg is actually an adult dose already so I hope the 30mg stops his vomiting.

Now his doctor was also a little concerned because like I have said, ALTES usually occur to babies under the age of one. With A almost being two this is strange. Does this surprise anyone that knows A and his history? NOPE!

IF he was to have another spell we are supposed to start CPR right away and call 911. Now with A’s history we of course know that by the time the ambulance was to come A would probably be fine, but like his doctor said it could be the time when he doesn’t start to breathe again and then at least they will be on the way. I can’t even tell you how scary this is for me. I have ALWAYS been a worrier and now having A can really be hard to deal with the worrying that goes on. There are some nights (I find nights worse for me) that I lay in bed and will think and think so much I get crazy with it! I don’t know what I would do if I lost A and at night when I think about it I can just keep it going on and on. I think about if he did pass, what would I do? Would Jeff and I stay together? What would I say at the funeral? It is nuts, but because I worry TOO much sometimes it is hard!

Anyhow, I will start with a few pictures from last week that I never did get to post. These first ones are him sitting like a big boy in his cool Cars chair!

A and his best buddy…

My little man sitting on the couch…

Now on Thursday evening we all got packed up and headed to C-town for the weekend. I was VERY nervous about even going of course with A having that spell but I figured that it didn’t really matter where we were.

We didn’t get in to grandma and grandpa’s house until around 11pm. A was very tired so we just got him ready and put him to bed.

A sitting in his seat watching TV…

A cuddling with daddy…

A and grandma…she was very tired! She had waited up for us on Thursday night to get there and didn’t get to bed until just after midnight and had to be up for work at 4am. Then she worked a full day on Friday and this was VERY late!

Okay now we are onto bath time. Daddy and I had given him a bath in the morning on Friday. A has always been VERY vocal in the tub and LOVES the water. So we love to just sit and listen to him and watch him move around. The kid really thinks he is swimming or something because he is SO active!

Anyhow, lately A has been playing with the sound “ffff”. Well, I am happy to report that A has said his first word (we can’t count it though really since he has no hearing!) and all of a sudden he said “*uck”! J and I looked at each other and back down at A. Of course we know that A has NO IDEA what he said but in a silly way we were excited that he said ANYTHING! I then said to J how A has been playing with his “fff” sound lately and it was probably just one of those things. Well wouldn’t you know it he says it again! We were bad and started laughing (which I know you should NOT do) but it was too funny. And when you have a child that has NEVER said anything it is still exciting.

So we tell grandma and grandpa and they kind of brushed it off of course. Well this bath below A was going on and on. Grandma was up there with us and all of a sudden A says “*uckin”. WHAT!??!!? Well there were three witnesses to this one and it was DEFINITELY what he said.

Well now onto the adorable bath pictures….

A sleeping with Lady curled up with him. I had to take this picture because Lady never really wants anything to do with A. She has never really been interested with him since he has come home but yet she wanted to be there constantly. We only took her with us and Cujo went to grandma and grandpa Clegg’s.

A and daddy watching the Leaf game. Wow that was quite the game!

Easter morning. Well I should say afternoon! Grandma and grandpa got A this Toronto table!

Aunt K and A at great grandma and grandpa’s for dinner last night.

A and great grandma…


Well today was a good day for all of us. A let me sleep in until 10am today and had a pretty good night! He is doing much better at night than he used to (I know I shouldn’t be saying this because it can change in a heartbeat). Didn’t do much all day…usual Sunday for us.

Went over to grandma and grandpa’s tonight to barbecue hamburgers that we were supposed to have last night. We watched to Storm game on TV and yep they lost. I don’t think they are going to go very far this year in the playoffs. Did some laundry out there and vacuumed the house! I took my Dyson over so I could see what I would get over there. This machine is amazing! Oh wait, have I already said this before? LOL

So tonight daddy was playing peek-a-boo with A and he thought it was hilarious! Daddy would put the laundry basket over top of him and then say “where is the baby?” and A would laugh! It was way too cute and I had to get some pics of him doing this. What a kid! He makes me smile so many times a day it is unreal! Can you believe that there are only 11 weeks until he turns 2!?!?

We Have The Buffalo Stander!

Well it was another fun day around this house. A didn’t have too bad of a night for how crappy he is feeling but he sure did not wake up happy. I took his temperature this morning and his fever was back. Not too bad, but enough that it was noticeable to me. We cuddled on the couch for a bit because that was all that he wanted to do. I tried to call the ped just before lunch but I couldn’t get through so I thought I would wait and of course it was closed for the afternoon. I will be taking him for sure tomorrow.

Andrea was here for 12pm. She is the new social service worker that will be working with A. He had just gone to sleep at about 11:30am so we just sat and talked. At 12:30pm his physiotherapist came over with Leanne from motion specialties. They brought the one stander for us to try with A! It is the buffalo stander which I wasn’t too keen on but willing to try it out and see how I like it. I guess it will be better for us to compare two standers and then decide anyways which one that we want.

I was so excited to get him in it, but he wasn’t thrilled at all. It was so obvious that he did not feel good to everyone that was here. Anyhow we did get him in it and they got it all set up for me so I just have to put him in it and do all the straps up. The pieces that are beside his head are actually laterals that are supposed to go on each side of him, but his head would sway back and forth too much. If we were to get this stander then there is a custom headrest that would be made for him to go on it.

Leanne and Monique didn’t end up leaving until almost 2pm and A was ready to go to sleep again. I did some laundry and cleaning while Andrea was here. She left at 4pm, wow how times flies!

Oh and on an exciting note before I forget, A took a whole entire bottle of sugar water!!!! That is 90mls!!! I wish he would do this ALL of the time and then we could be on the road to getting rid of the feeding tube! But for some strange reason he ONLY does this when he is not feeling well. I think it is because his mouth gets so dry and he is thirsty. Still this is very exciting for me! It was so nice to sit and have him bottling in my arms….I really miss that.

Daddy actually got home early for a change. It was about 4:30pm. I put A in his stander again and with daddy there he was okay for about three minutes and then wanted out. I even tried bubbles and the fan but to no avail.

We decided to go out to grandma and grandpa’s to BBQ since the weather was so nice. We picked up Aunt Shorty and she came as well. Uncle S was also there so we made burgers for all of us.

A passed out at about 8:30pm and when we went to leave he barely woke up while I dressed him and put him in his car seat. Such a cutie!

21 Months Old Today!

I am back! LOL I don’t know what I would do without my blog. I couldn’t post anything yesterday because my computer wasn’t here and my mom had brought her laptop over but I couldn’t get onto the Internet with it! Ugh I was so frustrated but here I am again.

So yesterday was a busy day. I did a TON of cleaning around here. I had five bags of garbage and I have two bags for good will! A was good today and had a great nap which is how I got so much done. Grandma stopped by for a bit. I took A to the Storm game last night with grandma and grandpa. They played London but ended up losing.

Today daddy worked very long! He started at 9am and didn’t get home until 10:30pm! I had a great day with A as you will be able to tell from the pictures! He is getting to be such a little boy! I am so proud of him everyday and he never ceases to amaze his mommy! He continues to do well with his rolling over. You can definitely tell now that he KNOWS what he is doing. Every time that he does roll over I get excited and say “yay” and praise him and now he smiles just before I do that, like he knows what is coming. It is soooo great to see him do this on a regular basis. I never thought the day would could where he would roll over and keep on doing it. It is so strange to me how he suddenly just started doing it one day after this long of not even really getting close to it. (Except for the odd time where I think it was total fluke.)

I cannot believe that my little man is 21 months old today! Only three months until his second birthday. You know, I look back and cannot even believe how long he spent in hospital and what he went through. I also find that looking back it seems like things weren’t “as bad” as they were. Don’t get me wrong, there were PLENTY of bad times but because we are past that it doesn’t seem as serious as it did then. When I go back and read his journal I still get emotional remembering certain times, meetings, days, nights…. there were many rough times. I can’t even begin to tell you how proud I am of this little boy and what he has endured, overcome and succeeded at. He is and will always be my little miracle. The joy he brings to each day is something that could never be replaced. He really is the love of my life!

Anyhow, tonight Uncle S came over for dinner. We had talked earlier and planned to eat for around 6pm but Andrea wasn’t back from the States and J wasn’t home from work. So we hung out for a bit and didn’t end up eating until about 9pm! It was a great dinner though. I love cooking good meals but it is so hard sometimes to even cook something quick!

Check out the spiky hair! It is starting to come in but it is sooo light you can never usually see it!

Is this not the perfect face?!

Now here is A trying SO hard to do tummy time and lift his head.

Tired boy, but he isn’t done yet!

NOW here is what I’m talking about!! WOO HOO A! And that smile makes it so much more perfect!