THANK YOU

Thank you for everyone for your prayers and support during this difficult time. I am overwhelmed by the support and love from everyone. I could list names of people to thank, but I would be afraid that I would leave someone out. So again just a big thanks.

Here is a poem that I wrote for my mom at her funeral that I thought I would share with all of you.

A mother like no other

Lots of people say that they have a “great mother”
However we had a mother, “like no other”
A mother who loved with an open heart
A mother who sacrificed and worked hard for her children
A mother who laughed, danced and sang everyday
A mother who loved her grandchildren so much and proved it !
A mother who loved to garden and go on road trips to the beach every summer
A mother who fought for her children and made lots of sacrifices for them
A mother who’s spirit radiated and was felt by many
A mother who was often told that she was requested to be a “second mother” to all of our friends
A mother who had whip cream and food fights often and we have the pictures to prove it
A mother who loved endlessly,
A mother who cherished her grandchildren every day.
"A mother like no other" who will be missed greatly


*****************************************************************************

FYI

I shall be returning to the blogging world shortly with some updates on how Wysdom and Blyss are doing. So stay tuned as I try to get back into blogging.

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.

This weeks adventure.....

As per usual we are crazy busy. A couple of months ago I couldn't imagine being any busier...but we are. Well this week consisted of diarrhea and a couple of call to the hospital on call pediatric surgeon for our big guy. Long story short we are still dealing with the g tube and the rip as well as him having diarrhea for a couple of days from the antibiotic and blood appearing in his g tube. We went to the hospital once since the last post and our Pedi looked at the tube and swabbed it for any other little "germs". Good news is now that it came back negative. Bad news is that we now have some skin growth or granulation tissue. Yes it has all been hard and I hate to see Wysdom cry. He is one tough boy. Right now I still like the g tube better than the ng, but it hasn't been the easiest either.

Wysdom has been a real trooper. He takes it like a big boy. He so wants to get into everything and play and all we are trying to do is keep him still so the g tube area can heal. We did have a nurse come in today and she said to let him do what he wants to do and we will see what happens in the morning. Of course Wysdom had to go full force. I can definitely say that Wysdom has learned some new tricks this week. Since we knew he was in pain, we never let him cry really. We picked him up and cuddled him and try to reposition him. Now that he is feeling a bit better, guess what we are seening? Crying and whining and then when we pick him up....you guessed it! A big smile and no more whines. He wants up all the time now. I just told Julian that we are in big trouble now!!! He is so catered too, especially because we don't want him to activate his strong reflux abilities and throw up everywhere.

This last couple of weeks he has become so much more vocal. Often people wonder who is making all that noise in the background when I am on the phone. Nope it's not Blyss, it's Wysdom. Blyss is handling this all in her own way. She has her own doll with it's own g tube and a doctors kit. She also is awesome at distracting her brother while he is getting things done to his tube that he may not like.

In general we are just staying on top of things. The house is a mess and meals, well let's just say they aren't the greatest these days. Any spare second that I get I try to head over to my moms. My sister and I have been trying to make her healthy food to eat to help get her strength up. We make juices( beet, carrot, celery to name a few). We are also looking into a lot and I mean a lot of alternative options for her care. So at night when I feed Wysdom I would normally blog, but now instead I focus on alternative cancer information. All I can say is that we take it one day at a time. We have my Aunts who are awesome and are helping out a lot with my mom's care. My mom is trying her hardest and so are we to do all that we can for her. When I do have a second to breath, I am totally overwhelmed some times. Thankfully, Julian has been awesome and so supportive. I usually leave him with Blyss and Wysdom for several hours a day. He definitely is letting me have more sleep and trying to keep me upbeat.

Thanks everyone again for your prayers and comments. I am always amazed and overjoyed at having such an awesome blogging community to be connected to and get support from. Even though I don't get on all of your blogs as much, I do think about all of you and miss blogging.

Well this week is going to be a crazy one. We have an:
appointment for the g tube, (out of town)
appointment for his forehead, (out of town)
appointment for his PT,
doctor appointment for mom,
feeding team appointment for Wysdom
and case management meeting for mom

Isn't it crazy how the brain works. I can remember all of the above appointments and dates and times all in my head, but can barely remember how old I am.(got it wrong today when someone asked at the bank). Mmmmm I think I just figured out why I can't remember my age:)

I will try to post some fun photo's soon.

Emergency trip to the hospital

Yup emergency trip to the hospital but we are home now.

We never ever have a dull moment. For the last week Wysdom has been dealing with some tenderness around his g tube and a little discharge. Nothing gross, but something that caused him some mild discomfort. Last night I played with him and had him practice his sitting by putting him on the floor between my legs with his back against my tummy. He played like this for at least 30 minutes or more and maybe had a few seconds of discomfort. I really wasn't pushing him to do it or anything and he seemed to be having fun. What a mistake that was. When I went to change his diaper after, I couldn't believe my eye. There was a big pouch of skin puffed up around the g tube. It was all red and it looked so swollen. Julian and I immediately discussed our options. Go to our local hospital emergency? Not a good idea. Call the hospital where the g tube was put in and where most of our doctors are seemed to be our best option. We contacted the on call pediatric surgeon and explained the situation. The surgeon advised us to wait and come in the morning for 9am to see someone in the Pediatric Clinic as the emergency staff may not know as much about the g tube as the clinic. So after much talk and lots of tears on my part, that is what we decided to do. We almost went to emergency because I didn't want to wait because it looked awful. However Julian talked me into waiting.

In the morning we rushed off to the hospital. Once we got there the game plan was quickly made. They were going to freeze his skin around the g tube and then cut it open to let the puss that had gathered, out. LET ME JUST SAY THAT MY STOMACH TURNED. THIS IS NOT FOR THE WEAK. My poor little man. As if he needs more procedures done to him. I was pretty upset at this because the g tube infections like this are pretty rare. We are so careful with it and wash our hands and sterilize before we go near the tube. Keep in mind this is already our second issue with the g tube since October.Julian being the trooper that he is was nominated by ME to stay with Wysdom, while I entertained Blyss in the hospital for an hour and a half. I just didn't think that I could handle being there today when they cut his skin open. I know I have gone through worse (heart surgery), but just couldn't do it. So when I got back in Wysdom was doing the cry that you do when you are really upset and are trying to catch your breath. He is SUCH A FIGHTER AND TROOPER!! HIS SPIRIT CAN NOT BE BROKEN.

The good news in all of this is that we didn't have to be admitted to the hospital. I had nightmares of this. Also he didn't have to have the tube removed which was another fear of mine. The way it looked with the swelling was very lopsided so we thought it was a structural issue. I am also so thankful for the doctors and my husband too. We are at home now and Wysdom is doing okay. He is fussy and getting his doses of Tempera(oh how I have come to love tempera). Right now he is sleeping peacefully. If all goes well we will go back in a week for a check up. We were supposed to go to the same hospital tomorrow for an ENT appointment but since it is an hour away I cancelled and will rebook it when he is feeling better.

Last night I had to pull out the books that I used to support me when I was in the hospital for Wysdom's heart surgery.It just all is too much, everything happening all at once. I already had a meltdown at my mom's earlier in the day. So I took a peek at these books on spirituality and hard times and read those before bed. Here is a quote that got me through the night. "Sorrow looks back, worry looks around, faith looks up" Anonymous . I think I will start to read some of these books again everyday like I used to do many years ago and hope that they give me some strength.

My poor neglected blog

My poor blog. I have neglected it and also all of my fellow bloggers. I haven't been able to catch up with everyone as of yet. Hope everyone had a Happy New Year!!

Things are really hectic and busy on this end. My sister and I are spending our free time visiting my mom and trying to make her healthy things to eat. She is not eating much so we are trying lot of things like fresh juices, soups and salads. In the last couple of days she has felt a bit better and had a little more energy. She seems a little more hopeful these last couple of days. It has been a whirlwind, but we are hanging on.

On the Wysdom front we are dealing with a g tube infection of some sort. Over the last week I thought he was teething, which he still probably is. He kept crying and putting his fingers in his mouth. Finally Julain and I figured out that something else was wrong. We saw a little red discharge on his g tube site. We ended up going to the hospital for a RSV shot this week. We asked them to check it out and they said it was fine. However the next day we could see more discharge and he was in a lot of pain.(Didn't help that Blyss fell on the g tube with her knee..ouch). Anyways we called another hospital the one where he got the g tube and our doctor is off until Monday, so the on call pedi faxed our pharmacy a prescription. So he is now on some meds for 10 days. We are really not sure what is going on and are going to try to see our doctor this week. Otherwise he is doing well and still packing on the pounds. We are switching his formula right now giving him half of his Good Start and adding a second stage formula that is being mixed in. We are hoping that this will help with his reflux and that the enticing vanilla flavour will encourage him to bottle. We are currently trying to bottle him and he is taking about 10mls which is pretty amazing since he didn't bottle for a year.

This week we start back into our routine of appointments with a hearing appointment, feeding team and hopefully a g tube appointment. Will keep you posted on how everything is going. Thanks for all the continued support for my mom. I may not get to post as often as I would like. Most of my time right now is being devoted to helping my mom and researching alternatives that can help support her. I am going to try to at least post once every week to keep you all informed on what Wysdom is up to. He is doing a lot of fun stuff like interacting really well with his sister and making some crazy noises and faces.

Christmas Update

I know I have been neglecting my blog and blog friends. Things have been really busy and crazy. We had a pretty good Christmas considering all that is going on. We spent Christmas Eve's at my Aunt's house. Blyss had a ball and was showing off her speaking abilities. She was all over the place talking to everyone. Usually she is a little shy. It was probably the sugar in all of the cookies she ate. Christmas day we always go to my mom's for breakfast and spend most of the day there. This year was definitely one we wanted to share together. The children all had fun with one exception. Wysdom. He is teething and he was not happy all day or for the last couple of days, but who can blame him. He is normally so easy going that we just feel bad for him while he is in so much discomfort. Wysdom did get some great toys as did Blyss. Blyss is thrilled with all of her toys and just spending time with family. My mom was able to spend a good part of the morning and early afternoon with us. She surprised us with a Wii(great for stress relief by the way). She is always outdoing herself and thinking of others. We were thrilled and shocked of course. She enjoyed watching us play for a bit. I got lots of pictures that I will post soon. Thanks again for all of your thoughts and prayer's for our family and my mom.

Merry Christmas

Thank you everyone for the prayers that you have sent for my mom-please keep them coming. I want to wish everyone a Merry Christmas! I hope everyone has a great Christmas filled with lots of love, family and friends. I am so blessed to have you all in my life and wish everyone the best for the holidays.

Keep us in your Prayers

I need your prayer please!! Please pray for my family and keep us in your thoughts over the holidays. I can't really elaborate right now, but I would appreciate your thoughts and strength at this time.

This prayer request is not Wysdom related just in case you are wondering. Of course you can go ahead and pray for him to, but I just wanted to let you know that he is doing fine. He actually seems to be thriving right now. He is playing a lot more and interested in new things. He seems to be trying to communicate with babbling and occasionally says mama . Like last night when he was upset.Mama only comes out when he is mad so far, but hey I will take it. He also used the sign for up with such energy and force last night when he was upset. I wish I had it on video. It was like "Pick me up now, mama". I loved it.

This week he got a visit from the feeding team and we got to see his overall progress on growth. He is currently a big boy and weighing in at 20 pounds and change. He is at the 75% for weight and 50% for height on the down syndrome charts. He is also learning to try to bottle again and is giving it a good effort.

We have a couple of more appointments before the holiday's arrive. I have done most of my shopping this week in little spurts and am almost done. Blyss is very excited and I can't wait to see Wysdom open up a gift for the first time. We are still trying to see if we can raise some money over the holidays for Reece's Rainbow(see previous post). Things are a little crazy in our lives right now but we still want to try raise some funds,so I will keep you posted on that as well:)

In Urgent need of a family and donations

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URGENT PLEA!
Please read this and pass the information to as many people as you can. This little cutie is being transferred in a few months to an institution.


My husband and I donated money this week to Reece's Rainbow in the spirit of giving. Recee's Rainbow is an international adoption agency for children with Down syndrome. By raising money to offer adoption grants on waiting children, they in turn are able to give adoptive families the extra financial help they need to bring a child home and avoid them getting put into horrible institutions where they are basically left in their cribs for life, with little nutrition or care.

I am so happy we were able to do so. However I have been truly bothered as well. I have seen all of the children that are waiting for help and homes and it is heartbreaking.

I just happened to see another blogger post an urgent request for children that need our help asap and on her list was Ian. I have been touched by Ian# (y65w-2) . He is close to 4 years old and is African American and is in an orphanage in Russia.(Yes this is a rare case because of that) Truly, I am touched by all of the children but just happened to connect with his picture as he reminds me a little bit of what Wysdom could look like when he is that age. He could so easily fit in with our family if we were in a position to adopt. However we are not in a position to do so, however we thought that we could spread the word and try to raise funds for him.

So we contacted Reece's Rainbow this week. We had the idea in our head that we could try a little more over the months and gather some donations from family. Well when we contacted Reece's Rainbow I learned that Ian did have a family ready to take him but that fell through and now he is going to be transferred to an institution within the new year. They said it would be anything short of a miracle if funds could be raised for this little boy. So I am asking everyone who can to donate for Ian and to pass the word along. He doesn't have much time at all. We want to collect some money for him and hopefully inspire a family to adopt him. From talking to the staff and Ree's Rainbow, the only way an adoption may happen is if significant funds are raised ASAP and a family is found to secure him from being transferred. So please do what you can to support this little cutie before he is sent away to an institution for life.

His description is "Ian is a very special boy! It is rare to find a child of African descent in Russia, but here he is! Ian is HEALTHY, with no heart condition. He is active and happy and an orphanage favorite. He does have one undescended testicle on the right side".



For more information on Ian and other urgent cases please go to www.reecesrainbow.org/waitingchild2.html

Or contact Andrea at bamaroberts@comcast.net

Trip to the hospital..for my mom

On Saturday Julian and I were going to go to my work Christmas Party. This would have been our first time out since Wysdom's birth. (Together as a couple and kid's free). We were looking forward to getting out. My mom and our student respite worker were planning on babysitting.

However the unexpected happened. Unfortunately on Saturday morning my mom went to the hospital. She has been dealing with pain in her back and side for several months now. Her doctor has been testing her for a slew of things and all the test are coming back negative. That is good of course, but something somewhere is not right. She still is in a huge amount of pain. On Thursday her doctor changed her medicine and when she took the new pills it made her worse. Since her doctor was not working on the weekend she had to go into emergency. How stressful!!!! She was there for about 8 hours, mostly in the early morning. I went to see her at the hospital on Saturday and by the time I got there she had been discharged. She is home now and in lots of pain and no one knows what it is. My cousin who is a paramedic went to see her tonight as she is not feeling well. My fun loving mother is being weighed down by pain. She is spending all day in bed for the most part. She has been unable to come out and do anything related to Christmas. She is very stressed out about it and her blood pressure keeps going up.

I am hoping that I can help her out this week with something. Either making dinner or just visiting. Last week I couldn't really do to much with all of our appointments. I did drop over today and give her some books on healing and some relaxation cd's and calming herbal teas. I am hoping that she can relax a bit and try not to get to stressed out. I think I will also bring Wysdom over as he brings a big smile to her face and maybe he can distract her from the pain for a little while. Blyss just wants her Nana to do stuff so it's a little harder with her. Please keep her in your prayers over the holidays. I tell ya.... never a quiet moment around here. I think I will be doing some relaxation techniques and taking some extra supplements for stress as well. I am still determined to get into the holiday cheer. I will keep you posted.

Christmas Spirit. How do you get yours?

Well this week is over and I can finally shift gears and start to think of the holidays. Each day this week was packed with appointments so it hasn't felt like Christmas yet. So I am on a mission to get into the holiday spirit in a matter of a week or so. I am hoping to maybe do a little baking, to do something charitable and oh yes shopping. I have not bought a single thing.I do have a lovely mother who put up my Christmas tree a couple of weeks ago for me. I would love to hear what special things everyone is doing to get into the holiday spirit? Any recipes to share or Christmas cd's that you can share? I really want to do something memorable this year as last year I was in the hospital with Wysdom. Well that's not totally true. I did sneak out for a couple of hours on Christmas night. So please share!!!! I can't wait to read about your Christmas cheer.


As for the rest of the updates:
This Thursday we went for a hearing test. I think that getting things put in Wysdom's ears is his least favorite thing. In the time that I parked the car and got to the room where he was with my husband, Wysdom had a runny nose full of snot, tears streaking down his face and he was trying to catch his breath. Luckily the technician got a few readings and decided that he really doesn't like the test. So she decided to stop for now as we know he is hearing better after the tubes were put in his ears. Friday we had an appointment scheduled about an hour a way for his plastics appointment for his forehead.(For those of you new to my blog-see post on plastic surgeon for more info as to why we are going to see one. Sorry my link is not working, something about pop ups.) Anyways we decided to cancel due to the weather,lack of sleep and general tiredness this week.

Eye Clinic and G Tube Updates

Today we spent the day at the hospital. No emergency!! Just two appointments. We went to get our updates after all of Wysdom's eye tests. We still don't know if he will need surgery yet or not. That will be decided in a couple of months from what I understand. We are to patch Wysdom's left eye for one to two hours a day for the next couple of months. This is in hopes of strengthening his right eye which tends to turn inwards. Both of his eyes turn inwards but the right does it the most.

We found out that THANKFULLY the CAT SCAN was fine. The VEP that we had done a couple of weeks ago(where Wysdom got to watch TV with the electrodes on his head)was not okay and came back as abnormal(for lack of a better word).

So we will see if his eye can strengthen with the patch and some prayers and then go from there. He does have pendulum nystagmus which is an involuntary rhythmic shaking or wobbling of the eyes. There are over 40 types of nystagmus and it is associated with some vision loss. However there is little treatment for it. If he does require surgery it will for his eyes that are crossing not the nystamus. We are told that the surgery would be before he is two years old.

As for the G tube it looks great. Our surgeon also suggested some options for Wysdoms constipation. He suggested that we add in the use of Senna specifically SENAKOT or PEG. Anyone tried either of these with their little ones? I have heard of both before but would like to know if anyone has tried it.

We are off for an RSV shot in the morning and a trip to see an new PT and OT. Thursday a hearing test and Friday to Sick Kids to see the plastics department for his forehead. Wish us luck!

I GOT MY CHRISTMAS GIFT EARLY!!!

I just want to share that Wysdom gave me an early Christmas Gift yesterday!!!. He sat for the 1st time by himself for a few seconds. He did this several times in a row. I had to call my husband to come and verify that he did it. He has not been showing any signs of sitting. Let me just say that I am so excited and was so surprised that he did it.

Yes I know we are behind in the physical therapy area, but that is okay. I have been okay with the fact that he hasn't sat because I know that he has been through a lot and was sedentary for the weeks after the g tube until it healed. The only time I was really upset was a couple of weeks ago when our therapist hinted that he may not be able to sit. Since then we have made it our goal to prove the opposite. Way to go Wysdom.

Any yes I am feeling a lot better. I am not a hundred percent but a lot better and out of bed. Wysdom sitting definitely gave me the boost that I needed though. Thanks everyone for your thought and wishes.

Mommy is sick

I am feeling under the weather these days. Looks like I have been brewing a sinus infection over the last little bit. I am into natural remedies and have been taking them for the last couple of weeks. At best it has kept me going and kept things at bay I have been feeling like I was wining the battle. However add in a dose of sleepless nights and a birthday party and some entertaining and WHAM! I AM SICK. So today I bit the bullet and went to the doctors and got some medication that knocked me off my @@@. So I am off to bed and will catch up on your blogs and on my post in a few days hopefully. I need to get better for next week which is packed (and I mean packed) with appointments. Off to bed!