Well not much happening here in the S household. I have a million things on my mind and what I need/want to get done here before summer! We really need to finish painting and we would also like to finish our basement. I got the ball rolling today and had my friends husband come and take some measurements and look at what exactly I want done down there. So hopefully within a short time we will have a ton more room and a place for all of A’s toys!
I have still been feeling pretty crappy most days but I really have to say that it makes me feel a bit more confident with the pregnancy because I never had this with A. As well I have been told that it means that overall the baby is doing better. This is a great thing and I expect this baby to stay in my belly until at least August…due date being the 25th! I have found this week as well that I just really have no energy at times and could stay in bed all day if I was able but of course that just can’t happen! The only really concerning thing to me is that I have been having chest pains for a couple of weeks now. Very off and on but sometimes it comes on so strong that I have to stop what I am doing. Yesterday it was pretty much an all day thing which had me kinda freaked out but today has been a bit better. It is something I will definitely have to bring up with the high risk team when I see them a week tomorrow!
Of course I think the other issue is that I know too much. I can’t be oblivious to things that happen in pregnancy as most mothers can. I know all too well the horrible things that can go wrong and it scares me half to death. I am trying to stay positive though with this one and have warned “her” (haha) that I expect her to wait until the right time to make an appearance and to not be like her brother.
J and I find ourselves talking a lot about the “what ifs” and how we both feel. I think this has helped us cope a bit better with the whole idea of another baby. The preemie thing is definitely not something that we ever ever want to experience again so I just hope that things go smoothly!
I find myself wondering a lot how A will be with the baby and how the baby will be with A. It is the one thing that I am really looking forward to. I just hope that this baby is a great brother or sister to A! I think it is going to be very good for him to have someone else to grow up with and to play with. ALL of the moms I have met that have children after their special needs child have told me that it was the best thing that they ever did for them. So we will just have to wait and see!!!!
A has been good as well. I can’t believe that so many people seem to be getting sick lately but he has been overall pretty healthy! *knock on wood* He had some funky rashes happening late last week but I have no idea what they were and out of nowhere they just stopped happening.
His auditory therapist has been starting with switch toys (he does use them with EI already) and she asked if she could try it using his head to control. I said sure but didn’t really think he would catch on but sure enough he was pushing his cheek over to make the toy go. What a smart little man eh?!
On Thursday, A’s cochlear implant decided that it wasn’t going to work anymore and I tried everything but still wasn’t working. I then called United Hearing (where I order all of his pieces from) and the first thing the lady said to me was “are you sure that you are trying to turn it on with the right button?” Ummmm HELLO he has had the thing for a year and a half, there is only three buttons on it, I can do it with my eyes closed…yes I am using the right button! So she tells me that if I have replaced all of the other pieces that it is most likely the actual processor which is the only part of the implant that I don’t have a spare of (you cannot have spares of these). So she tells me to call Cochlear USA and talk to them. So I call there Thursday afternoon. Talk to the lady and tell her what is happening. She tells me that she will have to call his audiologist at Toronto Sick Kids to get his mapping program from them to put in on a new processor and then send it out. So I asked how long this will take. She says she will call Sick Kids on MONDAY and then it takes usually two days to get in the mail. Hmmmm so he has to go almost a week without hearing?! Call Sick Kids on Friday!!!!!!!!!!!!!! I was upset and angry. I called Sick Kids on Friday and had them send them his mapping program to them right away. UGH people just don’t get it. Poor guy probably wonders what is going on.
And tonight I get a night out! Andrea (soon to be bride of my brother) and all of the girls from the wedding party are going to see Bride Wars. WOO HOO should be good!
I can hardly believe it! Today it is 4 months that A has been hearing. It feels like just yesterday that we were waiting for him to go into surgery. Time just seems to go way too fast sometimes.
So at four months hearing age I can say that A is progressing VERY well. He babbles throughout the day like a typical baby would. He has a lot of “ahhh” sounds and likes to play with the “f” sound as well. A lot of the sounds that he makes though he is using the back of his throat to do them and we need to get him to make the sounds from the front. His auditory therapist says it is common for kids that can’t hear to use the back of their throats to make sounds because then they can feel it as well. We are still working on him turning to his name and sometimes I think he knows and others I think he just looks because he hears us talking.
Almost every morning when I place the magnet on his head and put the band aid on you can tell that he is waiting for me to turn the implant on. And usually when I do he has a big smile.
I find that his attention spans to shows on TV is much longer and you can also tell which shows he really likes which include Elmo, Barney, Backyardigans, The Big Comfy Couch and some silly shows with people that just drive me nuts!
At night now he is so loud that I don’t even really need his monitor on. Funny because at night he isn’t hearing anything but yet it is like he still knows how to use his voice and what exactly he is doing. The screams that come out of this kid are like nothing I have ever heard come from his lungs!
He also has a fear of elevators which he never had in the past. I don’t really know what hearing has to do with this but it is the only thing that I can associate it with.
He also now turns to his feeding pump when it rings. Kinda cute because it shows me that he knows that is where the sound is coming from.
So the new goal made with his therapist last week is to try and make him understand tones in the voice. For example if he is doing something he shouldn’t be and I say “no” she wants a different reaction than he currently gives. If you tell him “no” now he thinks it is funny.
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.
Well it has been a very busy week around here, but to start here are the pictures from A’s playdate with Olivia & Avery.
Monday A had physio which he did very well at. Monique is always amazed with his attitude and ability to do things. This summer A has made great progress with a lot of what he is doing and is able to do. Things aren’t always noticeable to me, but when I look back on videos and pictures the change in him is just incredible! I am so proud of his determination to do things and his incredible attitude with WANTING to do things. This is only going to help in in life progress more than many thought that he would.
He also had auditory verbal therapy on Monday with Deb, and she hasn’t seen him in at least three weeks. She was amazed at his progress with his hearing and was VERY happy to say the least. I think that he has gone further with that already than thought before the implant. Last night I was holding him saying “where is daddy?” and he looked over at J twice! I don’t know if it was a coincidence or what but it was WAY too exciting either way.
Tuesday Shelly came over to play with A so that daddy and I could go out on a date. We went and saw Halloween at the movies and it was great! The last movie that we saw together was in August of 2001! And I can probably count on one hand the amount of times that we have had “us” time since A was born.
Wednesday Ashton had Bonnie, his EI here to play with him. She had a really cool toy that spun and had a blue light in it so the string that was going around would light up. I thought for sure that he would LOVE it but he didn’t like it at all. It is a switch toy and right away he was pouting. I told her to try again because I thought with it being new that might just be his problem with it. NOPE he wanted nothing to do with it.
His nurse was supposed to come last night as well but she was sick. I don’t think I have told you all that Ashton has a new nurse. She has been here twice and will be doing once a week. She is very nice and good with him.
Today Ashton had Sandi here from CNIB to work with his vision. Do the appointments ever end?! haha probably not. I have a hard time with her as well because I have never thought that Ashton had issues with his vision. We were all pretty surprised when we found out that he needed glasses and was very close to be considered legally blind. I have a referral in to see Dr.Wiggins in Waterloo and I hope that he will be able to help me better understand what Ashton is seeing and so forth.
I have been waiting to hear back from Ashton’s doctors in London about his MRI. They had left a message on Friday that sounded pretty urgent and said they would call me Monday. Never heard a thing. I have left two messages and still nothing. I have also not heard from the respirologist from last week that told me that she would call on Tuesday. SO with tomorrow being Friday I am expecting two important phone calls!
I am happy to report that FINALLY I have an appointment with a neurologist at Toronto Sick Kids. I have been trying to get this referral since October of 2006! My countless phone calls, my attitude and persistance has finally paid off! It is not until December but I am excited to speak to someone new that doesn’t know Ashton.
I have also been really busy with wedding plans! Wow I cannot get over how much work it is and how many decisions need to be made. I wish I had more people around that would help me with what I am doing!
Okay FIRST I have to wish a huge happy birthday to Cole!!! His birthday was on Monday and he turned 2 years old! He was also at McMaster and was born at 24 weeks weighing 680 grams. He is such an amazing little guy and he has come SO far!Big hugs to you Cole and we will see you soon hopefully!!!
Next I have to wish a happy birthday to my brother, or Uncle S as he is known! He turned 27 yesterday and has been one of my best friends ever. Also a big congratulations to him and Andrea for buying their first house which they will be moving into at the end of this month!
So this past weekend we headed down to C-town to grandma and grandpas for a visit. We didn’t leave until Sunday afternoon but we had a great time. It was a busy house with J’s aunts, uncles and cousins.
A’s cousin Wes being the playful awesome kid he is!
A LOVES lights. Wes had a light stick he was using to entertain A…
Grandma and A hanging out in the crappy weather…oh well at least it was hot on Monday for us!!!
A is one of his favorite places ever…the pool!!!
Awwww what a great family picture!!!
I love this picture of the two of them….
Does he EVER stop smiling?!??!
Grandma and A getting some sun…
Nap time for my little man!
What a cool dude!
Swimming again with grandma…
There were a lot more pictures of A and grandma swimming but he wasn’t wearing a diaper so I can’t post those pics!!!
We ended up getting home late from C-town and didn’t get a very good sleep before having to head to Toronto Sick Kids yesterday. I ended up leaving at 7:45am for the 10am appointment and got there at 9:15am! It is so crazy how sometimes it can take three hours, two hours and then this! I am very happy that it was an uneventful drive as it was the first time that I have had to travel there alone with him.
The appointment went well and A was doing very good at reacting to the sounds that Ruth was playing. Everytime that he would look away from what I was doing to entertain him after a sound she would set off a puppet. The puppet is in a box in the corner of the room and it has lights and sounds. They use it kind of as a reward for turning to the sound. Well my little smarty pants LOVED this puppet and was turning and smiling at it without it even going off! hahaha he just wanted to see it go off and was waiting for it.
Once she was done with doing all of the changes and settings she swept through the probes and made sure that he was okay with it all. He was fine but definitely wondering what was going on.
We got home about 1pm after picking up my glasses and he was exhausted. I found that he was having a hard time going to sleep so I turned off the implant and he zonked right out. After his nap I turned his implant on and boy was he upset. Pouting, real tears and all…
I have to tell you that it is heartbreaking to have him cry like that with tears. It is something that I have not had to deal with for two years and WOW it is crazy! I couldn’t help but giggle to myself as well because it is just so dramatic! He noticed and then he was trying not to laugh. It was too cute.
Daddy got home from work early so we headed over to grandma and grandpas to celebrate Uncle S’s birthday with him and Andrea.
A was having fun with daddy here. If you stomp your feet and walk towards him this is his reaction!
Uncle S getting his one gift from Andrea…a punching bag!
Birthday cake time…
We ended up getting home about 10:30pm and I could barely keep my eyes open I was so tired (and very grumpy!). Thank God that A went right to bed….
Well I haven’t posted in a couple of days as things around here have been busy and A still has his low grade fever. Sunday grandma and grandpa came home from up North so we were all over there waiting for them to get home. It was also nice to be in the air conditioning!
Monday was a crazy day for me. I was having one of my very emotional days where I feel like my world is falling apart. Or has. I really don’t like the feeling but I think sometimes I just get so tired of fighting with docs and so on that I break. It is very hard to raise a child with all of A’s needs and I get overwhelmed sometimes. I am sure that you moms out there that have a special child know exactly what I talking about.
I was happy that Dawn was here that day to work with A because I just couldn’t deal with a fussy child that day. I don’t know what it is lately with him or what is going on, but I do know that he really isn’t himself. I think with so much changing for him it is hard for him. With having his implant on he has to deal with all of this noise that he has never had before. He is cutting seven teeth at the same time including molars. Just too many things going on at once. And this fever just won’t go away!
On Monday I tried giving A a bottle with water. He took 30mls within about five minutes and then he started to choke. I have to be very careful doing a bottle as he forgets to breathe/suck/swallow at the same time. So I have to pace him at about every two sucks. Anyhow he did great until he started to choke and then it all came out of his nose! Ugh it was gross and he was NOT happy.
However yesteray I tried a bottle and he took 50mls and kept it all down! I am so impressed with this kid at times that I just want to jump up and down! It is going to be something that I will work on when I feel he can handle it or shows me a sign that he wants to do it. With his reflux and blue spells it is something that I have to be very careful with.
Tuesday grandma was here and we took A to the doctor. He didn’t really say much except to keep an eye on it and if he still has the temperature next week to bring him back for sure. It ranges from 100-101 and no different. I wasn’t really that concerned with it as he doesn’t seem very ill but I wanted to get him checked out. And he said not to assume that a fever is from teething. I don’t think it is that because he has been working on these teeth for so long and never had the fever before.
I know that I myself haven’t been feeling the greatest the past couple of days so maybe it is just some bug that won’t go away! Today is actually the worst day for me so far as I just feel sick to my stomach and like I have a sore throat coming on. Not fun stuff that is for sure!
Monday was Aunt Shorty’s 18th birthday(my sister)! She was doing her own thing with her boyfriend so we got together last night to celebrate and give her gifts. A and I went for dinner with Aunt Shorty, grandma and grandpa. I can hardly believe that she is 18 years old already!
Today Shelly was here to play with A. Deb was also here to do his hearing therapy for a while. She is very happy with how he is progressing and even following sounds around the table when we were doing therapy. He had a new reaction yesterday to the vaccuum! He did NOT like it. Haha it was way too cute. Here are some cute pics from today with her drawing with A.
So I also went today to have my eyes checked. I have been asked so much why I am squinting so I thought I might as well go. Well turns out that I do need glasses but not that I have to wear all of the time. I couldn’t believe how much more clear the letters were that I was reading when she showed me the prescription that I would be getting! WOW I was amazed that for so long I have been thinking things are clear and they really aren’t! I picked out some really funky glasses after about an hour of trying tons on. LOL I’ll be sure to post a picture when I get them.
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!