Getting bad with my blogging here lately! Yesterday Dawn (A’s PSW) was here to work with him for the first time. She did VERY well! She was very comfortable playing with him, holding him and just being herself. It was great to see that I am not going to have to give her ideas on how to keep him busy. The only complaint that I have is basically the same for everyone else. I always have to tell them to use sanitizer CONSTANTLY! I guess they just don’t realize how I do how susceptible A is to ANY germs. But it will come in time I am sure. I just have to stay on top of it! It has been really nice having the extra help and being able to do things around here that normally take me the whole day!
Daddy didn’t get home last night until 8:30pm and then we ate dinner and watched the rest of Dazed and Confused. I really don’t know what he likes about that movie!!
Today A and I had a great day. He wasn’t up until about 10:15am and boy it was quite the wake up call! He was screaming at the top of his lungs because once again his leg was caught in the slats. I really need to figure something out so that he isn’t doing that.
He had a great time playing on the floor and sitting his new chair today. I have rearranged our living room so that it is completely open for him to play and move around easily.
I continued today with my vacuuming! LOL It is so addicting now that I have seen how well this works! Makes it nice to vacuum because now at least I know that what I am doing is paying off. I also cleaned out our air filter that we have. It has been shut off for about four months now! So that is back up and running. Actually, my parents got us the air purifier when A came home. When I was reading the instructions on how to clean it I saw that it isn’t supposed to be used when oxygen is present in the house! WOW I was surprised. A of course isn’t on oxygen anymore but he was until November!
We were going to go to grandma and grandpa’s for dinner tonight and watch the Storm game but daddy didn’t get home until 9pm so that didn’t work out.
Well it has been a busy two days for me. I feel like I never have enough time in a day to do what I want to do! Yesterday I got A up about 8:30am so that we could drive daddy to work so I would have the car to run a few errands. Grandma got here just after 10am and A was already back asleep! Guess he didn’t like being taken out of bed that early. Lately he isn’t actually getting out of bed until an average of 10am.
I left just before noon to go to pick up A’s new moulds for his hearing aids ONCE AGAIN. I was very upset when I got there because they made the one that he wears all of the time without the lock on the top. And of course the right I didn’t have much hope for anyways. They told me if they didn’t fit then to just call and they would book him in to do new ones. Ya, easy for them to say but I am the one that has to drive there and back every time for nothing!
I stopped at Babies’R’Us on the way home to get A his new car seat. I paid for it and was waiting and waiting for them to bring it down for me. After about fifteen minutes I asked her to call and see what was taking so long for the guy from stock to bring it down. It was then that she tells me that they don’t have it in stock! Ugh I was so mad! The lady then tells me to give her my name and number and they would call when they are in. LOL I told her I wanted my money back instead and that I would come back.
I got home just in time for grandma to head back to work. A was up and he sat in his new chair for a while and watched TV. He loves sitting in it!! He was still a bit on the cranky side yesterday but is much better today. Actually back to acting himself!
Today A got up at 9:30am. Liz his dietitian was here for 10:30am. He has been gaining an average of 11 grams a day for the last couple of weeks. He is now up to 21 pounds 3 ounces! My little porker! I still cannot believe even the size of his legs now…how chubby they are. They were the size of a finger when he was born!
I talked to her about his vomiting but we both agree that we don’t think it is his formula. She also brought new feeding bags that she wants me to start using. Instead of the one bag there are two connected to one line. One holds the formula and the other holds water. I can then program the pump to automatically do flushes at whatever interval I want. It will be a big help because he needs to get an extra 150-200mls of water a day on top of his formula. I am okay doing it during the day but this will help so that I don’t even need to worry about it and during the night will be even nicer.
Andrea was here from 1-5pm today. I got a ton of stuff done around here! I cleaned out our big storage closet today for about the third time this year. Now I have it so A’s stuff that he uses is in there and not laying all over the place. I also got to make a nice dinner without having to worry about entertaining A.
Tonight I went out to get some cleaner for our air purifier and met up with my brother. We went to the mall so that he could find a shirt/tie for his girlfriends grad ball this weekend. The theme is “James Bond” so it should be interesting!
Oh and for those of you wondering, yes I did finish my vacuuming with my Dyson! LOL I could barely sleep the other night because I was so excited for the morning to come so that I could do the whole apartment! Who would have thought that you could be so excited about cleaning?! Anyhow I did finish and I had to empty the container TWICE! And this is from vacuuming ONE TIME! I am so impressed with this machine!
I can never get over these two! We were so worried about Cujo when I was pregnant because he was so aggressive and possessive. We were even told by the vet that we would have to take him to school and if that didn’t help than the best thing to do would be to put him down. So off to school he went and he was the teachers pet! I am so amazed when I watch Cujo with A now. He loves him so much and always wants to be near him. Today it was kind of funny and J and I both had a good laugh. A was sleeping on the couch and J and I were sitting on the love seat. Cujo walked over to us and sat there for a few seconds then walked over to A…sniffed right in his face and laid down on the spot. It was too cute.
And A with Cujo….well he just can’t get enough! Every time he sees him walk by him he smiles or pulls his arms in and has his mouth going like he wants to call him.
Well there are a ton of pictures in this post because I didn’t do one when we got back from Chatham last night. We didn’t get in until about 10:30pm and I was too tired to post pictures and blog.
So we had a good visit with grandma and grandpa S. When we got there they were actually just on their way out the door so we went with them. We went for dinner as well and it was really nice!
I noticed on the car trip to C-town that A was jumpy and would cry. J actually had to take him out of his car seat at Timmy’s because he went right off colour. I knew that his tube/tummy was bugging him. Sure enough on Monday it was red and irritated looking with some blood coming out from around it. It was better today but he still was not the happy boy that he usually is. (Although from the pictures below you would never know it!)
Grandpa and sleeping A…
Daddy and A…
Grandma and A….
So today Andrea was here for a few hours and A got his stroller as well!! I am so excited to actually FINALLY have it here to use! It is also going to be great to just have around for him to sit in properly with enough support. It has a tray that comes with it so I can put toys in front of him. As you can see he really enjoyed it! It took Leanne (the lady who deals with the equipment) about an hour to get it set up right and perfect just for him. I definitely recommend this stroller for any parents that are looking at specialized strollers! I have to say though that I have NO IDEA where these companies get their prices from. Leanne gave me the final receipt for this stroller and it was $6100!!!
Staring intently at his singing bunny…
Spotted mommy with the camera!
Need I say how adorable he is?!?!
Tonight I went and picked up the dogs from my parents place. I also brought back my new vacuum and have been so excited to use it!! I was telling my parents about it on Friday night and they got it for me on Saturday and I have been dying to use this thing! It is the Dyson Animal and when I came home tonight (about 11:45pm) I put it together and did the living room! LOL Who knew you could be so excited about vacuuming?! Anyhow, I am TOTALLY AMAZED by this thing! Amazing isn’t even the word for it! JUST from the living room and one hallway I was absolutely disgusted by how much dog hair and dirt there was! (Put it this way, I almost have to empty it for how much is in there!) Even Jeff couldn’t believe it! I vacuum probably every two days and it is SO obvious that other vacuums just don’t compare! I can’t wait until the morning to do the rest of the apartment!
Yay, grandma and grandpa are back from Alabama! They had a good week down there. Nice weather, relaxation and time away that they both definitely deserve!
Today was a good day. A STILL has a low grade temperature but he is totally himself. Kind of odd to me. He was up about 9am and Andrea was here for 10am. I got a lot done around here today in the short time that she was here! I even baked a chocolate chip banana loaf! Andrea left at 1pm and I was sure that A would go down for a nap. He was fussing off and on for her from about 11:30am. So I laid him down, got his soother but nope he wanted nothing to do with sleep.
So I got out his play mat and we did some tummy time and a few rolls! After about a half hour of tummy time he seemed tired so I got him laid up on the couch again and once again he didn’t want to sleep.
We cuddled for a while and then I put him into his swing since he was so happy and wide awake. At about 5pm I decided to pack him up and head to the pharmacy and then over to grandma and grandpa’s. I picked up his new prescription for Zantac and then we hung out at g & g’s. (By the way, A did take the Zantac by mouth tonight but I sure don’t think it will be a regular thing! He looked like he was still struggling to swallow minutes later!)
STILL no sleep! I was totally confused by this point as to HOW he was still awake and so happy! It was going on 8pm! Daddy finally got there just after 8pm as I had dinner ready.
Grandma and grandpa got home just before 10pm. They brought back this cool light up toy for A, a train and a University baby onesie.
Anyhow, I am EXHAUSTED. It is after midnight and I need to get to bed! Of course I can’t do that without leaving you with a few pics!
Well I am happy to say that as of tonight A seemed much more himself. His temperature is still up a little wee bit but not how it was. And that is without giving him any advil all day today. We will be going to the doctor tomorrow for sure! Today when I called I couldn’t get through and then when I did, they were already closed.
Andrea was here for 10am today and stayed until 1pm. Here are a few pictures of the two of them today playing with his toys…
I just wanted to write to all those preemie moms out there who have been talking a lot lately about children with special needs. Lately I have been reading so much on the blogs that I follow about the future with special needs kids, how they will handle it, concerns over whether or not they will get teased, what their life will be like….and then the moms of preemies who aren’t yet old enough to know if anything is wrong.
Anyhow, I wanted to say that I think it is very normal for us to wonder what the future of our children will be like. I believe that every single parent does this at some point or another. When you add in the fact that a child has special needs I think it complicates matters more. There is not one day that goes by where I don’t wonder about what A’s life is going to be like. I also ask myself a lot why this had to happen to him….why he has to go through so much.
I was reading the paper the other day and there was an article on bullying. It was more or less about a web page that two kids had created to talk about bullying and what it has done to them. It is a place for kids to go to see that they are not alone and that there is help out there. Anyhow, it went on to talk about a few incidents in particular and of course one caught my eye. There was a 17year old boy who was saying that he was bullied for almost all of his school years. There was once even a letter sent out to 900 students at his school making fun of him! But what made my heart drop was the fact that the email made fun of him because he had cerebral palsy. It brought tears to my eyes. Even writing this here and thinking about it makes me teary eyed.
I cannot even imagine what I would do as a mom if someone was to do this with A. The sad part is, is that most of these kids that are bullied are afraid to tell anyone and their parents usually never know.
Teasing, bullying…whatever you want to call it comes down to parenting. I believe that kids are afraid of people who are “different”. Their parents don’t talk to them about things like this in life, and really why would they when they don’t deal with it? I think it makes it even harder because there are even so many adults that are “afraid” of people with special needs. I just wish that at this day in age special needs kids, teenagers and adults could be treated with the respect that they deserve. Do people not realize that people with special needs are that way because of some sort of trauma, prematurity, alcoholic mothers, drug users…they don’t choose to be that way. This makes it even more difficult for me to handle.
I notice the stares a lot of times even now when I am out with A. It is much better than before because he isn’t on oxygen, but with the glasses and hearing aids I can tell people are looking for that reason. Mind you, most of them are saying “awww” as they walk by. How could they not? My little man is adorable! I wonder what it is going to be like in five years…ten years…
Anyhow what I guess I am getting at, is that it is totally okay and normal to worry about the future for our “special” kids. And to the preemie moms who worry about the what ifs and how they would do it, all I have to say is that you will do it! I know it is so hard to think of but when something comes up you have nothing else to do but handle it.
I’ll be the first to admit how hard it is to hear one thing after the other. First the cerebral palsy, then that he is deaf, then that he can’t see well….it is so hard sometimes! I think what makes everything so much easier on me than some other moms that I know is because I have always known in my heart that A would be “special”. I was never really surprised to hear anything that I have heard. A is perfect to me (and a lot of others!) and I would not change one thing about him. He has made me the happiest mommy in the world!
That makes me think of one more point that I want to make. I read on another blog…a mom saying how she hopes that her kids won’t be disappointed that she decided to save them instead of letting them go. Our special kids will not even know that they are special kids if we raise them the way we would any other child! Take a look at A…he is one of the happiest kids that I have EVER seen, and this is not being said because he is mine!
Anyhow I think that is enough for now…I am sure that I will have more to add to this at a later date.
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!
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.
Well today started off pretty hectic for me because after J went to work I fell back asleep and didn’t wake up until the phone was ringing. Grandma was here! And it was almost 10am! A was still sound asleep….WOW is all I have to say about that! Anyhow it was then that I found out that Andrea was coming over. My mom had recommended her to me to be a worker for A. So I was a little frazzled because I had just got up, hadn’t showered and most importantly never had my coffee yet!
Anyhow things went okay. Andrea was great. I was kind of nervous because I have not had any luck in the past with having to meet people that want to work with A. It is very hard to trust anyone with him. I was also a little nervous because my mom had mentioned how she was only nineteen years old and I know most people that age would not work with him well. I was impressed to say the least. She is going to school for becoming a developmental service worker and wants to eventually be an EA. I believe that it takes someone special to do that kind of work so I think that she just may work for us!
I had to lay down this afternoon while my mom was here because I was so tired. I have not been feeling myself for the past couple of days. I cannot believe how many times this year that I have been sick! I really can’t wait until the nice weather is here because I am so sick of the cold and not being able to take A anywhere.
A slept this afternoon too. Got up just before 4pm, and boy was he happy today!
He was in his swing just laughing away at something!
And my favorite picture of the day!!!