Sad News: My mom lost her battle

I have some sad news. My mom who was battling with pancreatic cancer passed away on Saturday. Her health declined very quickly early last week. Our family is devastated, especially her 8 grandchildren. She stayed at home and passed away in the comfort of her own house surrounded by family.

I was fortunate to see her very often and spend time with her daily. Both my sister and I were able to share some time with her that we will cherish every day.

Her funeral will be held on Wednesday. Thank you everyone for your prayers and support over the last couple of weeks. A special thanks to all of our family members that stayed with her and helped her through out her battle-you know who you are. We could not have done this with out you.

Rest in peace mom. We love you.

My hero's: Wysdom and Mom

Can I just say that Wysdom is my HERO. He has been through a lot in the last month and a half but he just keeps on smiling and fighting his battles as they arrive. I am so proud of him today. We went to the hospital AGAIN( yes I know you must all be so sick of me telling you this) I will tell you because that is all I have to talk about as it is my reality right now. Anyways he had some g tube issues over the weekend and ended up getting some granulation tissue taken care of today. Taken care of sounds much better than burnt of with Silver Nitrate. He handled it like a champ. Oh yes he screamed and cried his head off. I knew this was going to be the case as one mother on the BBC had shared her story with this experience with me. After about five minutes he calmed down and gave us some big smiles and was playing like usual.

He is so strong and has gone through so much and continues to thrive. Even with all of the tube problems we just found out that he now weighs 21 pounds and change. He is growing and gaining weight at a good rate putting him at the 75% on the Down Syndrome Chart. So yes he is my HERO!

This week Wysdom has mastered puckering up and showing me that he can give me a kiss. Since I am part Polish, I say it to him in Polish and he just puckers up and plants one on me. Through all of the trial and tribulations we are having fun with him. We are well into our natural routine that I blogged about earlier. He is taking his probiotics and vitamins well. Really he should have been on this a long time ago, but for whatever reason I felt quite hesitant. I am guessing probably because he has had so many medical issues that I felt afraid but in reality I am sure it is the best for him.

Wysdom also performed on cue today too. We went to visit my mom, who is very ill and is just hanging on right now. She is a sleep for most of the day. However today she was able to see Wysdom smile and wave at her. He even tried to give her a kiss. This was a great joy to me to see her smiling and responding to him. I know that she loved coming to our house to play with him and loves him dearly. Anyways that is about all I can say as this is bringing me to tears.

So the plan is for Wysdom to heal from his g tube and get him back into his activities which he has been banned from for the last month or two. We actually banned him from going on his tummy as to let the tube heal. He still finds his own way once in a while. So hopefully this week he can be free to do whatever.

We are also having a meeting in the morning with our OT, PT and a vendor. We are hoping to find a sleeping arrangement for Wysdom. Something that is elevated but comfy so that he can have a better sleep. Right now he spends most of his time sleeping in his bouncy chair. His crib doesn't do the job. Even with it being elevated it doesn't seem to work for him. His playpen sometimes works if it is not around feeding time. So the poor little guy sleeps in his bouncy chair. So the vendor will be bringing some wedges and sleeping items. Wish us luck!

The plan for me is to spend what little time I have left with my mom. She is a fighter but this battle is a hard one that she is not winning. Everyday right now is such a gift of time. So please keep us in your prayers and thoughts through this difficult time. I also just wanted to send out some love to the several moms that have their little ones in the hospital right now from illness and also for heart surgery. My thoughts and prayers are with you too.

Thanks everyone for your prayers and wishes.

We're going natural

Well we are going "natural" as in seeking natural alternatives to help us out with Wysdom. We had three appointments spread between Monday and Tuesday. Monday we spent the morning with Wysdom's pediatrician. He got all of his usual stuff done and then his round of RSV shots. He also got his g tube peeked at. Tuesday was a bit more packed. We drove out of town to see his ENT and later that same day at the same hospital saw his Pediatric Surgeon. Both appointments turned out to be very short and really did not provide any of the answers that we were looking for.

For the ENT appointment we were getting his ear tubes checked and also asking about what could be done about his poor sleeping patterns at night. We were basically told that nothing really could be done now. Wysdom was already agitated after the ear check so the ENT could not do much at the time. We told him our concerns with Wysdom's breathing and trouble sleeping. He said that really the only option would be surgery to remove the tonsils and adenoids and that is not our best option now as it is quite a hard surgery for little ones his age to go through. The other option was steroid's and he really doesn't believe they are all that effective and absorbed properly. So.....we are left to deal with his breathing issues on our own for now and if it continues to call back. We are guessing that it maybe sleep apnea and a combination of reflux. So we are going to look at the reflux issue and also have a meeting with our OT to look at alternative beds.

Second on our visit for the day was with the g tube DR. He looked at the tube and said he thought it looked good. I asked "At what point do you remove a g tube if there is continual infections?" He said that have rarely ever happened and that is not really an option. So "What can we do to prevent this?" He said to make sure that we don't allow the g tube to be pulled our caught on anything. "I don't allow it and we are very careful" was my reply. He also mentioned that it just could be Wysdom's flora on his skin and that he also may have a weakened immune system.

So here is where the natural part comes in. Julian and I talked and thought that yes maybe his immune system is low and he can't fight of these infections or heal properly. So we started him off on Probiotics and also a vitamin supplement. We are also going to try to get him off some of his pediasure feeds and move into real foods. Not sure how we are going to get there yet. He eats solids pretty well just in small amounts. So we will have to figure out how to make him hungry and lessen his pediasure intake so he can eat solids. All of you that have feeding issues know what I am talking about I am sure and you know that it is not that easy. However we must try. Overall the g tube is looking okay. I asked about using natural oils for the tube and the doctor said I could go ahead and try it. I just have to figure out what it would be. We are more than likely going to go to a ND for Wysdom to help us support him the best we can with the right products.

Not much else to report since this week has been taken up by medical appointments. I did manage to drop and drag Wysdom's favorite toy through the grease in the parking garage. All Julian and I can do is laugh. Poor little ducky!!We are living in a world of "organized chaos" right now and operate like a well oiled team of shift workers. He does his shift with the children while I sleep and vice versa. All in all we are making it work or our system is working for us. We sometimes struggle but we have the best two little motivators here with us.

We are so thankful for both Blyss and Wysdom. Wysdom graced us today with his swinging in his bouncy chair while clapping his hands to the tunes of Black Eyed Peas. Blyss on the other hand entertained her self using our new massage chair that we got for Christmas. When I came back from the kitchen she sat naked and crossed legged in a yoga pose in the massage chair. Let me just say I almost spit out my food. I had to contain my surprise and laughter. She told me she couldn't feel the massage with her clothes on. There is never a dull, boring moment over here:)

The Good, The Bad and The Ugly

Thanks everyone for your comments. They keep me going!! Here are the updates from the last couple of days. There is some good news and not so good news. The good news is that my mom was discharged from the hospital this afternoon sometime. She is outta there!!! Yah and now at home and will have home care come and help her. She still has a tough road ahead but at least she is at home for now and no more procedures at this point.

The bad news is that I didn't get to see her today at all. Why you ask? Because we spent most of the day at the hospital( out of town one) with Wysdom. Last night we noticed that he was getting a puffy spot around his tube AGAIN!! It is in the exact same place which leads me to think that the first infection never truly went away at all. On Thursday we went back to the hospital and talked to another doctor. The g tube area looked fine from a quick glance. However if you touched it or moved around that area Wysdom freaked out. The doctor that we saw was great. He did order an ultrasound for Wysdom which was not fun at all. However he did believe me when I said I thought that there was an infection since Monday and finally gave us a prescription for an antibiotic.

Now for the Ugly. Well by early Friday morning we noticed it gathering into a boil or abscess again. We called our out of town hospital since they were the ones that put it in. We talked to another on call doctor and she was less than helpful. After taking to her, we quickly called her back in less than a couple of minutes and asked her if we should bring him to our local hospital instead. Can you believe that she had the nerve to tell Julian that we disturbed her from her sleep.!!! Julian handled that better than I would have. He said with all due respect how are we supposed to know if you are at the hospital or at home in bed. UGH!!! Anyways I was less than pleased. What's with the hospital's this week. So in the morning we went to Hamilton and they looked at it and immediately decided to cut it open again and drain it. They put some local freezing on it and after a 20 minute wait they went to drain it, however it had already torn open. My poor little man has to go through this again. They don't know why really. Either it's his skin flora or it's rubbing too much. They don't really know for sure. I am very frustrated and don't want him to go through this again. I told the nurse that I can't keep having this happen. He is missing all of his developmental activities like floor time and sitting. He can't do much because he is always healing. Julian and I are now under a bit of pressure we feel to find our own strategy for cleaning the tube and keeping infections away. They say that this is so RARE. Yah right. Not for us. We also feel we have to try to get Wysdom to feed orally as we don't want this tube anymore. This is definitely where I am asking for miracles in my life right now. This g tube is so time consuming right now and we still have eye, ENT, cardio and all other therapy appointments.

So if anyone uses anything really different to wash their g tubes or knows of anyone who does I would be interested. I am going to look into something natural to maybe put in the bath water or something. Who knows? I am not sure yet..but I can't have his tummy splitting open week after week and I can't go back to the NG. So that is where we are at. I know he is really strong and tough but enough is enough.

We got home around 3:00, I called my mom and then went right to bed. My house is a disaster and the food we are eating is not the greatest as we just can't keep up. Through it all though, Wysdom is STILL SMILING AND SPREADING LOVE. Poor Blyss, she has spent the whole week everyday...in the hospital too. She is going to need a special treat for being such a good girl.

My new motto for the week is "Miracles are welcome"

Can you say "Angry and Stressed Out"?

Okay forgive me for I am going to vent.I am drained. I tired and I am not going to lie, I am ANGRY. Angry for so many reasons that I don't think I can list them all. The best way to put it is that I am ANGRY with the medical field. I am angry at how they can treat a human being. I am angry that I had to spend most of my day arguing and fighting for my mom and my son.

Who would have thought that things could get worse than they are? Not me. I thought that things should be looking up a bit. Let me just tell you this week has sucked. It is like I am in a constant boxing match and I continoulsy keep getting knocked down. I stand up and get knocked down. I get up and get another punch and down I go. You get the point. Who would have thought that I would have to bring my son in to the hospital to have his g tube looked at (again!!) and then have to run upstairs to my mom on another floor and deal with her being laid up in the hallway all night after being booted out of her room. This is just crazy.

So let me just recap a bit here. Just after I posted how well things were going with Wysdom we started to notice he was having some pain again with the g tube. We have called the hospital so many times that I am sure we are driving them crazy. He has pain, he's crying and no one really knows what to do. We are being cautios and watching for any sign of infection. Tuesday we had our nurse look at it. The g tube looks good but he still is in pain, so we are thinking that there maybe an infection inside again or that the last one never quite left. So the early part of the day was spent on the phone with doctors trying to decide if there is something wrong or not. So we headed into the hospital after talking to the oncall pediatrician at our local hospital. They loosened it and took x rays to see if it is still in the right placed. So far all is good. The one thing that they could not say is if there is an infection inside. From the outside it looks good...but something is not right on the inside is my guess. It's my mommy intuition.

Then after Wysdom was done we all went upstairs to see my mom who is having a procedure done today. She was admitted on Tuesday afternoon. Let me just say that it has not been a good experience. My sister and I left her at the hospital on Tuesday evening after we got my mom all settled in after intake. My sister got her a phone set up and a TV to pass the time. We unpacked a few of her things and then said our goodbyes. When I called this morning I learned from a patient that "the woman who was here yesterday got moved". No biggy, so I call the floor to get her new extension and find out if she is back from her procedure. Well they inform me that she is no longer in a room and is laying in the hallway!!!. What the >>>>! So I ask to speak to someone who then directs me to someone else and eventually to a Public Relations person. To make a long crappy story short she spent the whole night in the hallway with no phone and no easy access to a washroom. She was left unattended for several hours and we didn't get to talk to her before her surgery. The message that the nurse said she would deliver to my mom to let her know that I called and would be there soon never arrived to her. Can you imagine. To be going in for a procedure that you are already anxious about and then to be put in the hallway with the lights on all night and then not able to see or talk to your family in the morning. Oh how I complained and will complain again. There is much more that goes with this story as far as no food, no help, unsafely and negligent behaviour on behalf of some doctors. However I am sure you get the picture. Anyways in the end some things got sorted out and she finally got a bed a mere 12 hours later. Most of my anger comes from the fact that the procedure that they attempted today should have been done a month ago. I have no medical training but I know that, mmm but who will take responsibility for that?! No one!! Hopefully she is resting through the night and everything is going well.

So I am at home now feeding Wysdom and trying to recover from the last couple of days. I am praying and hoping that the morning will bring better news than today did. I am praying that there is nothing wrong with Wysdom's tube and that I don't have to make an out of town trip to another hospital in the morning and I am praying that my mom is recovering and will get out of the hospital asap. At the end of all this I have to let today's and previous days anger go. So here is what I still am grateful for. I am grateful that my mom made it through today and that the doctor that worked on her was very good. I am also grateful that my husband has been able to to watch Blyss and Wysdom when I take off to the hospital or visit my mom at home. I am grateful that I have wonderful Aunts who come running when I call for help. I am grateful that my husbands family comes down to help every weekend. I am grateful for Wysdom and Blyss. I am grateful that even though we had problems at the hospital that there is one to go to. I am grateful for mornings and fresh starts.

We have one noisy baby!

Wysom has always been pretty vocal. However in the last week he has kicked it up a notch and is making lots of new sounds and babbling all the time. We are having so much fun with him and his noisy self. At times he can make such a loud noise that family members are totally in awe that the noise is coming from our little peanut. (Well actually not so little weighing in at almost 22 pounds). We of course are used to all of his noises, especially early in the morning. It does seem like Wysdom is trying to express himself more and mimic some of the things that we are saying.

I just have to say that we are having so much fun with him right now. He just seems to be thriving this last week. I think it could be also the fact that he is feeling better and has recovered(fingers crossed)from all of his g tube issues.

One thing that he loves doing is demanding for us to pick him up. He uses the sign with such force that you gotta know it's a demand "mommy pick me up now please"
Everyday I am truly in awe at how much joy and love he brings to our lives. It is just so amazing. We are so blessed to have two amazing children. One babbling boy and one Hannah Montana Rock Star.(more about that later)

Random Fun Photos

Here are a few random and I mean random pictures. When I went to upload from my camera I realized that I really haven't taken a lot of pictures in the last couple of weeks. So here is it folks. (As well just to let you know Wysdom's g tube is doing much better-will post more later about this).





Wysdom in his X mas outfit which he wore for about 10 minutes! Too Hot!!




This is us trying to get Wysdom to keep his eye patch on. We thought we would distract him with the hat. Ah nope that didn't work. We are to have it on for 1-2 hours a day. We can make it to about 15 minutes. HE HATES IT!!




I love this shot. Blyss took it. Isn't she an awesome photographer?





Wysdom giving daddy some love before the bath.



Laughs at bath time!




My big girl. Cutie pie.




Trying to do yoga.



My mom at Christmas. Christmas is her birthday. She would probably not like me posting this....but you all need to see who you are praying for.