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!
Well I am sad to announce that baby Jaxon passed away this morning at 2:43am. His parents were able to be there with him as he passed. This family has already suffered so much and now have more heartache to deal with. They have lost all three of their babies. My heart truly goes out to them at this time.
On a brighter side of life, my little man. He had his last auditory verbal therapy session yesterday for a while. Deb said that she will be waiting to come back until after we find out about his implant and when the tentative surgery will be! She always has tons of cool toys for him and he loves working with her!
Last night I put A to bed and he just did not want to go to sleep. I couldn’t help but laugh at him because everytime that we would go in to check him he was smiling like crazy at us! These pictures were at 1am!
Today A and I headed to Hamilton to have a playdate with Sophia and Alina. It has been a while since we were last there to visit but we were able to make it work for today! Our days with Alina and A are just really busy so it was great to finally get over there. It is so nice to see the way that they interact together.
Sophia bending down to kiss A…
Aren’t they the sweetest?!
Sophia putting stickers on A’s head…
A getting his very first kiss on the lips! LOL (Don’t know whats up with my face in this picture! LOL)
One of the rare findings…a picture of A and mommy! (Thanks Vickie!) And yes, A is standing here with VERY minimal support!
A was getting pretty good at pulling out the plug from Alina’s trach…
Leaning in for another kiss!
Looking at the balloon…
Caught them both smiling!
Alina & Mommy…look at that smile!
Such a sweetheart…
Watching TV…are you comfy A? LOL
This was way too funny…Alina was sucking her hand/thumb and her elbow was by A’s mouth…so he decided that he was going to suck on her arm!
He is really thinking here!
Back to sucking on her arm…
After leaving from our playdate I decided to stop in at Mac. I was really hoping to see Marg since it has been almost a year but of course she was not on. We did however get to see Dr.Shah and talked for a bit. (He was A’s very first doctor in the NICU & a wonderful man!)
As we were leaving from there and heading to the elevators we got REALLY lucky! Almost every single person (besides nurses and doctors) that A had was coming from the other way!! It was so nice to see them. There are a few that we have not seen since A was still in the NICU!
A when I got home from Hamilton…passed right out!
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.
Well today was the day that we went to Mac to see A’s GI doctor to try and figure out what to do about his reflux. With all of A’s issues it is difficult to figure out what is going on and when. I have looked back through my journal, and A had his tube changed on February 15th. On the 17th the vomiting of formula started. On the 21st of February he was admitted to hospital with vomiting, fever and a ton of movements with agitation. He had an x-ray at that point as I was concerned that something with the new tube wasn’t right. However things looked okay. I had asked for a contrast study but they do not do them in Guelph. Go figure.
Anyways, it seems that at that point all of the issues really started. So, his GI doctor said that she is going to put in a form to have a contrast study done to see what is going on with the tube and if it is in the correct place. I had told her my problems that I have had with a certain radiologist and she knew exactly who I was talking about. There is also the one nurse, and the same thing. She knew who I meant. I find this very sad that a doctor knows who I am speaking of. This obviously means that more people have had problems with them. I just wonder why nothing is ever done with people like this. So I should hear this week when the contrast study will be, she said hopefully next week. She also said that she wants to be there as well so I was happy to hear that.
Now, if the tube looks a bit off then she said they will change it and see how things go after the change. If things are fine then we will either have to try a motility drug called cisipride which I am not keen on. It is NOT available on the market and has to be special ordered. It was causing cardiac issues in babies/children who were taking it. So to get it, A will have to have an ekg and then the government has to approve the drug for him. I also would have to sign forms to get it. Then one month after starting the drug he would have another ekg.
If we don’t go that route, it looks like we may have to go the fundoplication route. This is also something that I do not want to do. But with the spell that he had on the 4th, it is very concerning and something needs to be done. So we will see what happens. I am not thrilled with either decision that I will have to make.
A has been much better today with the vomiting than he was all weekend. We were supposed to go for a playdate with Alina and Sophia before seeing GI but we kind of mixed up the dates. However I would not have ended up going as I was not feeling the greatest today. I think that A and I both have had some sort of stomach bug happening.
We stopped by the NICU to see if anyone was on, but no luck again today. I have been waiting for A’s first neo doc to come back (he goes away for months every year) but he had already gone home. When the front desk paged him, he called and wanted to talk to me. So we had a nice chat for about ten minutes. He is a wonderful doctor and we were SO lucky to have him overlooking A’s care for the first good while. I cannot wait to see him again as it has been about six months, if not more.
Some exciting news, A is getting TWO more teeth!! I have been wondering lately why he has not got any new ones in so long and sure enough I noticed the one last night. The other one you can feel. They are both on the bottom, so that will be a total of eight teeth!
Yesterday when A’s auditory verbal therapist was here to work with A, I was giving her the usual update and told her about A’s first word. I was a bit nervous but I told her and she was thrilled!! She is happy that he is making new sounds and like she said, he doesn’t know what it means so it is not a big deal. She actually said to even encourage it if we can. When he says it, we are supposed to show him a truck and say “yes, truck”. (He has not said it again anyways).
I told her about A’s spell and she did warn me that sick kids might not do the implant if he isn’t stable. So that was a bit of a bummer, but at the same time I understand their concern. Every time that he is put under is a risk already and with a major surgery it makes it more complicated. So we will just have to see how that all works out as well.
Anyhow, some pics from today….I got a ton of smiles today!! YAY!
Well today went well until about 11am. A was up at 9am and was still tired but he was fussing in bed so I got him up. As time went on he was acting irritable and fussing a lot which is unlike him so I knew he wasn’t feeling well. My social worker was here and even she knew that something was up because normally A is so happy. It was hard for us to even talk because he was so fussy and throwing up so much (I could scream!) I noticed he was warm so I took his temp. Sure enough he had a fever. I gave him some Advil and it helped with that. I am really wondering lately if he is aspirating when he vomits. Again last night it was very hard for me to go to sleep because his breathing his so loud and wet sounding. It is definitely different than what I have heard with him EVER. So then I get searching about aspirating and start getting worried that he has aspiration pneumonia. However with the fever coming down I felt much better. I think it is time for maybe another swallow study (although with him not feeding by mouth it won’t help much). I left a message with his GI today hoping that she can see us sooner than later.
I was going to cancel all of the appointments this afternoon but decided when he went to sleep about 1pm that I would just leave them as they were and take the day as it came. So at 2pm Pat came over. She is the manager of HLO, a company that I am getting a PSW through. We talked for a little bit until Dawn came who will be the PSW working with A. I was sooo sooo impressed! She was VERY nice and really was interested in A and what he is doing and what she needs to do with him. So she will be coming here every Monday and Friday for three hours each time. It is almost like I know she is a PERFECT fit for A and I. Kind of weird. Pat told me that if I am happy with how things are going and want another one to come just to give her a call. I know that some of them are willing to do nights so that is going to be an option in the back of my mind for sure. The agency that I get nursing through has no night nurses available right now because of shortage.
At 2:30pm Deb came to work with A on his hearing. It was nice for Dawn to be able to see what he does with some of his days and she seemed to enjoy it. Here are some pictures of Deb working with him. (Oh, and by the way I couldn’t believe how happy he was to play with her! It was then that I decided he didn’t need to go to the doctor’s to get checked on. It is surely an A thing to be like this!)
In this picture she was doing the little piggy’s with his toes. She had done his left foot and then right when she was done he lifted his right foot like he was telling her to do both! It was really cute!
In these next pictures he was laughing! It isn’t too often that A laughs so I was kind of dumbfounded about he whole fever/vomiting ordeal when he was doing this for Deb!
Deb is so happy with how much he has changed in the few weeks since she has seen him. It is always nice to hear how happy the therapists are with him and his progress. And she can never get over how he has such great social skills! Something he definitely doesn’t get from mommy. That is surely a daddy trait that he received!
So after his therapy session with Deb he was tired and wanted to sleep again. Dawn and I sat here and talked about lots of different things. I love how comfortable she was here and how comfortable I felt with her.
Dawn left at 5pm and A decided to wake up shortly after that. And boom it was like a different boy again! He was irritable/fussing…..so frustrating when I never know what is going on with him! I ended up getting him calm but he just wanted to be held all night. Which is fine. I love that he still wants to cuddle! I knew for sure that he wasn’t feeling well because I got out some sugar water in the bottle and he was going nuts! I had to be very careful though because it is almost like in the very beginning when he forgets that he has to breathe and swallow at the same time. He took about 40ml all together which is very impressive for a child that doesn’t take ANYTHING by mouth!
Tonight after daddy got home I went out to get A some pedialyte to run through his tube for the night to hopefully rest his tummy so he can get a good sleep. I also know that when I don’t feel well I don’t want to eat so I am sure he isn’t really too happy having formula go in constantly.
I am really hoping that he has a good sleep and is better tomorrow. It is almost like he has not fully recovered from whatever was wrong with him when he was admitted a couple of weeks ago. I sure wish doctors could figure him out.
And yay, we have a stander coming tomorrow finally! It is the one that I don’t really want to try but I figure it won’t hurt. She may bring the superstand as well but not sure yet as there are still parts on it that need to be replaced.
Come morning he was the happy baby he normally is. Grandma was here for 9:30am and she never would have guessed about the night that he had. We took him to the doctors for 10:15am but didn’t get in until about 11am. He was weighed in and was the big 20 pounds! I can hardly believe it! He got his RSV shot and was not a happy camper. I think it bugs me just as much as him. I find it so hard now to watch him go through things like this. Funny when I look back at everything I watched him go through in the NICU and didn’t make me flinch.
I spoke to his doctor about the vomiting and even brought him my list of times and how much was thrown up. He didn’t seem too concerned about it but did say that if he isn’t better by the end of the week to bring him back in. The blood he said is probably from the force of the vomiting and his esophagus is irritated. I however am not convinced that the bile is nothing and have a feeling the tube isn’t correct.
Anyhow we got home around noon and A was asleep at 12:30pm. He didn’t get up until 2:30pm which was perfect timing for Deb his AVT. Grandma left and then I got A all set up in his chair ready for his therapy. Deb noticed right away that Ashton just wasn’t himself. Within minutes he just looked pale and lethargic. He wasn’t interested in any of her toys which he usually loves and didn’t really want to do anything. She got the bubbles out and he was okay for a few minutes (he loves bubbles)and I caught one smile from him while she did this. There is a song that we do with the bubbles and it is pretty low tone so we think he most likely can hear it. It goes, “bubbles,bubbles up up up…bubbles, bubbles pop pop pop.” LOL Here are the pictures of the two of them.
Well the therapy didn’t last long. A threw up again and I was a little more at ease because it was clear mucus. But within minutes up came the bile. Deb even noticed how off colour A goes when he is trying to catch his breath after vomiting. So we decided to call it an end and just sat and talked for a bit. A is supposed to go for another hearing test tomorrow and I just hope that he is well enough to go because he has missed the last two because of being sick. I really don’t want things to be delayed more than they already have been. So fingers are crossed that he has a good night and is well enough to go. Also kind of exciting because daddy doesn’t work tomorrow so it will be his first time coming with us for the cochlear implant process. Joyce will be here shortly then I can head to bed and get a goods night sleep.
So after Deb leaving A wanted to sleep again. I cuddled with him for a bit but he just wanted to lay on his tummy and go to sleep. He slept for a couple of hours and then was up again and back to the vomiting. It wasn’t until after 6pm tonight that I noticed that it looks like there is formula in with the bile. This is very frustrating for me because A shouldn’t have anything in his stomach. And considering that his feeding tube goes right to his intestines this means to me that the tube isn’t placed probably. This angers me considering that I told the doc at Mac that when I saw the tube on the screen it wasn’t right. He changed it and it was only two short hours later that we were back in there with him correcting what he had supposedly already done. Let me tell you if I find out his tube isn’t in the right place I am not going to be happy. And people don’t like when I’m not happy. 🙂
So it has been a long day. In total since midnight A has thrown up 21 times.
Well I have received a few emails wondering if everything is okay and I just wanted to say yes! I was unable to use my Internet for a couple of days but I am all hooked up now! I had just over 100 emails and of course have missed writing in my blog daily.
So this week has been pretty boring anyhow. I still am not feeling the greatest. I went to the walk in clinic on Monday because of my ear and sure enough it was infected. I was started on antibiotics but have to say that I still cannot hear out of my ear and it still is irritating!
A is doing good. He has not caught my cold or anything! Thank God for hand sanitizer! He had his therapy with Monica (OT) on Tuesday and she is very happy with him. Being relatively new to A it is nice to hear considering she is just getting to know him. I was supposed to go to a parent group for children with special needs with my friend Vickie that night as well but we both weren’t feeling good enough to go.
Yesterday A had his teacher from the deaf school (Valerie) and I was irritated to no end! I don’t really know what it is with her, but I just can feel my blood boiling when she is here. I think I really need to look into putting it on hold with her until A is closer to getting into school. He also had Deb (AVT) come over in the afternoon to work with him. She was very pleased to see how much more interactive A is with his toys. He gets very excited lately with toys and really wants to play like a normal baby!
I also talked to her about him hearing certain things now. If you clap loud enough he will look and certain sounds I do he will look as well. She said it is learned behaviour and that he recognizes those sounds now. This will help when he gets his implant because he will at least have some sense of what sound is.
We also did a testing scale for A because of what I was told at his appointment last week with the specialists in London. The doctor was pretty much dead on. A has all of the requirements in the 1-4 month range and a few in the 4-6 month range. Definitely opened my eyes to where he “should” be and where he is. We have to take into account his hearing/seeing obviously so hopefully once he gets his implant we will be able to see all of the 4-6 month boxes checked and higher.
So something new this week with A is his vomiting. He never used to vomit unless he was sick and it seems to be a daily occurrence now. It isn’t formula, but instead is thick/white mucus or bile. It is a bit concerning to me because of how often he is doing it and how much there is when he does. During the night I also hear him dry heaving a lot and gagging during the day for no apparent reason. In a book that I am reading I read that vomiting excess mucus can be the body’s way of getting rid of something harmful. It then goes on to say that the body is made to receive a diversified diet and that there is something called the “rotation diet”. It requires to use four different formulas and change them everyday from 1-4 and then continue. Interesting to read about since I have never heard such a thing. But if you think about it, it really makes sense. A has been on this enfamil now for 14 months. The first six months he was on breast milk. That is a long time to be on one formula that is concentrated to 30cals as well. So when I see his dietitian this week I will talk to her and see what she thinks.
Well tonight we went to the Storm game because they were playing the rival team London. Those are always great games to go to. Storm lost in overtime.
Well today was pretty busy around here. Grandma came here this morning at 9:30am and we headed out to do something for both of us. (Those of you I talk to know what this is.) We then stopped at Zellers before heading back home.
I laid down to have a little nap before some friends of my moms (John and Lorraine) came over to meet A and visit with us. John is a minister who had been the one that renewed my parents vows years ago.
At 2pm he had his dietitian come to weigh him and talk about his feeding. He still weighs 19.5lbs which isn’t really a shock considering how sick he was a couple of weeks ago. We have also decided to go up on his feed from 44ml an hour to 50ml over the next week and then he will have a total of 7 hours off a day instead of the 4 hours he has now. So that will be nice. Then the plan is to have him off for five in the morning and then try and feed him orally or bottle him. Then whatever he might take will be extra time off. So we will see how that goes. I think a lot of why he doesn’t want to eat now is because he isn’t hungry being on feeds for 20hours out of each day.
At 2:30pm Deb (AVT) was here to work with him. She was very happy with his play skills that he is getting lately. He reaches for everything and you can tell that he really wants to do things. She also noticed that he does have some reaction to sounds now. I have noticed lately with a “ba ba” sound that he will turn automatically. I did ask her how she thought he would do without an implant and just the hearing aids. She said that it is possible for kids to learn to talk but a lot more work because they don’t hear “s” sounds. And with all of A’s other needs it would be even harder for him.
Well that was it for today! Here are some pictures from last night at grandma and grandpa’s house…
Today was a busy day for A. Joyce left at 8am and then I had to actually get him out of bed for his physio appointment at 9:45am! Monique hasn’t worked with him in quite a while because of him being sick so much. She was VERY pleased with what he was doing for her today! She could definitely tell the difference with his head control and upper body. He wasn’t in the greatest of moods today for some reason. Not too sure why. I think that his tube site is just bothering him because if you move him a certain way he isn’t too happy. Anyhow, here are two pictures from physio with Monique. This exercise that he is doing in the pictures is one that he was never very good at and didn’t like. What a difference! (He is smiling at grandma…)
So after physio was his auditory verbal therapy with Deb. He did pretty well with her considering that I had to wake him up because he was sleeping and he was pooped out from his physio. Deb was also amazed with him today! It was so great for people to tell me what they notice because I don’t always see the changes. I have however noticed the changes with his head control and the way that he is interacting now. Even with showing him pictures now he smiles or studies them. You can tell when he recognizes someone in the picture.
Deb was happy to hear that I feel that A is hearing some sounds. I believe that the sounds are very slight for him but just enough to notice. And certain ones, like “ba, stop, bop”. They have to be done pretty loud for him to give some sort of reaction. She said to just keep working with him how I do and hopefully it will all help him out in the long run. The more sounds that they are “aware” of before implant only make it easier for them to learn post implant.
I also got a nice compliment from her. She told me that normally auditory verbal therapy is once a week. (She has been coming here every two weeks.) She said this is because she knows how hard I work with A, and that she doesn’t need to worry that he isn’t getting any sort of therapy. So that was nice. I guess all of these workers that come here see all kinds of things out there.
So tonight we decided to finally take all of the gifts that we had bought for the babies in the NICU at McMaster. I had bought them just before Christmas to take them in then but with A being sick that never happened. Then I had planned on doing it for New Years and once again A was sick. So, finally tonight we did it! I was hoping to see Danielle, but she had to leave. Another time.
Just a picture of my little man sleeping after we got home…..awwww